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Lay constructions of recovery:

A Q methodological study

Francesca Trudy Palmer

Submitted for the Degree of

Doctor of Psychology

(Clinical Psychology)

School of Psychology

Faculty of Arts and Human Sciences

University of Surrey

Guildford, Surrey

United Kingdom

September 2015

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Abstract

Recovery from mental health problems is a key target for the NHS today. The philosophy of

personal recovery is included within government policies and the design of some mental

health services in the UK. Research into recovery has focused largely on service-users and

there is a lack of information about lay perceptions of recovery. This study sought to examine

lay constructions of recovery from two mental health problems - depression and psychosis -

using Q methodology. Seventy-two participants sorted 47 statements about recovery based

upon their level of relative agreement or disagreement with each one after reading a vignette

describing either symptoms of depression or of psychosis. Three subtly different

constructions emerged from participants in the depression condition and two from those in

the psychosis condition. Lay constructions of recovery from each of these conditions

overlapped to some extent, with differences emerging around the centrality of professional

input and the eradication of symptoms. The study demonstrated that the constructions of lay

people in this sample comprised elements of both personal and clinical recovery. Generally,

participants seemed to have an optimistic view on the possibility of recovery from both

conditions.

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Acknowledgements

I would like to thank all of my placement supervisors throughout my training for

teaching me and helping me to develop my own style. I have learnt a lot from each of you. I

would like to thank Laura Simonds and Mary John for supporting me through some very

difficult parts of training and for helping me to improve my research skills. My fellow

trainees have been a great source of support and encouragement throughout the training

experience, and I would like to thank Lucy and Gucci in particular for providing ideas and

opinions on some of this portfolio.

I would like to thank my other friends for all the fun times which helped take my

mind off the course and also for supportive words when things got tricky. I would like to

thank my parents and my partner Luke for their ever present love, affection and support

despite their own tremendous personal challenges. Their steady presence and belief in my

abilities has allowed me to develop in the surety that they will always support and help me. I

would like to thank Luke in particular for your endless patience and pride in me, even when I

have not deserved it.

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Contents

Title page P.1

MRP Abstract P.2

Acknowledgements P.3

Contents page P.4

MRP Empirical Paper P. 6

MRP Proposal (from second project) P.64

MRP Literature Review (from second project) P.75

MRP Proposal (marked, from first project) P.105

MRP Literature Review (marked, from first project) P.120

Overview of Clinical Experience P. 153

Table of assessments P. 155

Publication resulting from clinical training P. 157

5

Research

6

MRP Empirical Paper

Lay constructions of recovery: A Q methodological study

Abstract

Recovery from mental health problems is a key target for the NHS today. The philosophy of

personal recovery is included within government policies and the design of some mental

health services in the UK. Research into recovery has focused largely on service-users and

there is a lack of information about lay perceptions of recovery. This study sought to examine

lay constructions of recovery from two mental health problems - depression and psychosis -

using Q methodology. Seventy-two participants sorted 47 statements about recovery based

upon their level of relative agreement or disagreement with each one after reading a vignette

describing either symptoms of depression or of psychosis. Three subtly different

constructions emerged from participants in the depression condition and two from those in

the psychosis condition. Lay constructions of recovery from each of these conditions

overlapped to some extent, with differences emerging around the centrality of professional

input and the eradication of symptoms. The study demonstrated that the constructions of lay

people in this sample comprised elements of both personal and clinical recovery. Generally,

participants seemed to have an optimistic view on the possibility of recovery from both

conditions.

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Introduction

One in four people will experience mental distress at some point during their lives

(World Health Organisation, 2001) and this can have a significant impact personally, socially

and economically (Centre for Mental Health, 2010; Cooper et al., 2005; Fergusson, Horwood

& Ridder, 2005; Healthcare Commission et al., 2008; Mykeltun et al., 2009; Saha, Chant &

McGrath, 2007; Simon et al., 2006; Social Exclusion Unit, 2004; The NHS Information

Centre, 2010; Williams & Ziedonis, 2004). It is therefore unsurprising that promoting

recovery from mental health problems is a key target for the National Health Service (NHS)

today (NHS England, 2014). However, the term 'recovery' has held different meanings across

time and context.

History of Recovery

Prior to the 1960s, people who were labelled with mental health problems were often

treated within institutions (Lawton-Smith & McCulloch, 2013). At this time, professionals

held a significant amount of power over those they were treating and often made decisions

about the person's care without their input, such that the person with the illness was not an

active member in the recovery process (Borg & Kristiansen, 2004). Diagnoses were often

given with no hope attached, particularly psychotic disorders which were deemed to be

largely unresponsive to treatment (Borg & Kristiansen, 2004). Deegan (1997) described

receiving a diagnosis in the early 1970s as a "prognosis of doom" (p. 16) where no mention

of recovery was made and the expectation was that the symptoms would worsen over time.

At this time, symptom relief was thought of as the primary aim of recovery, where recovery

would be 'achieved' if symptoms had reduced sufficiently for the person to function as they

did prior to the onset of the illness (Anthony, 1993). This is known as 'clinical recovery'. In

the 1970s, the failures of treatment within institutions and concerns about how people were

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treated within them led to deinstitutionalization and treatment in the community. This led in

turn to the realization that a reduction in symptoms was not all that people required in order

to rebuild their lives and that social inclusion was also an important aspect of recovery from

mental illness (Slade, 2009).

Throughout the 1980s and 1990s, the survivor movement began to develop as people

started sharing their experiences of recovery. Recovery within this movement was about

being able to live a dignified, autonomous and satisfying life despite symptoms of mental

illness. This is known as 'personal recovery'. The survivor movement was supported by

research which demonstrated the varied outcomes of serious mental health problems such as

schizophrenia, confirming the notion that deterioration was not the only possible outcome

and providing evidence that people with this diagnosis could continue to live a satisfying life

(Davidson & McGlashan, 1997).

Defining Recovery

Described above are two broad ways in which recovery has been conceptualised

within mental health by Slade (2009). Personal recovery is further described as "... a deeply

personal, unique process of changing one's attitudes, values, feelings, goals, skills, and/or

roles. It is a way of living a satisfying, hopeful and contributing life even with limitations

caused by illness. Recovery involves the development of new meaning and purpose in one's

life as one grows beyond the catastrophic effects of mental illness" (Anthony, 1993, p. 15).

Other researchers have conceptualised these two categories of recovery as 'recovery from'

and 'recovery in', where 'recovery from' indicates a return to 'normal' functioning following a

reduction in symptoms and 'recovery in' indicates achieving a place in society despite

symptoms and managing to overcome the impact of having the label of mentally ill

(Davidson & Roe 2007; Pilgrim & McCranie, 2013). Other authors (e.g. Resnick, Fontana,

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Lehman & Rosenheck, 2005) have explained that the definition of recovery depends on

whether someone is describing the process of recovery, or expecting recovery as an outcome.

The former is more in keeping with personal recovery and the latter with clinical recovery.

Given these various meanings of recovery, it is perhaps unsurprising that a consensus remains

elusive (Pilgrim & McCranie, 2013). However, as each person’s recovery is individual, it is

perhaps less important to have a single definition agreed by all than to understand the

commonalities in the recovery experience. A body of research conducted mainly with adults

with mental health problems has been used to develop models of recovery which include

common components of recovery.

A recent review paper (Palmer, 2014) identified and reviewed eight main models of

recovery. These models postulated that the phases of recovery tend to follow a general

pattern of feeling overwhelmed by the diagnosis and the situation, followed by the ignition of

hope and the realisation that a better life could occur. This then leads to people trying to make

changes in their lives although they may experience many setbacks. If they manage to

persevere despite these, they will move forward with their lives, regain their old abilities

and/or develop new experiences and roles for themselves. It is likely that these changes

would lead to an improved quality of life overall and, although symptoms may still be

present, the person is now more confident at managing them. However, the process of

recovery is not linear and the person may return to periods of struggling. Another

commonality in recovery models is that as the person moves through the stages of recovery,

certain processes are required to occur. The most prevalent of these are finding hope, taking

responsibility and developing a new identity. A common limitation of the models reviewed

by Palmer (2014) was that the vast majority involved participants who had experienced

severe mental health problems such as psychosis. This has been useful for understanding

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recovery in psychosis but it remains a question whether this focus can illuminate recovery in

other conditions.

Wood, Price, Morrison and Haddock (2013) investigated service-user perceptions of

recovery from psychosis using a different methodology to those within the review: Q

methodology. They identified four distinct constructions of recovery. The first of these was

'collaborative support and understanding' which emphasised the importance of support,

understanding and positive thinking in recovery. The second factor was 'emotional change

through social and medical support' which was about managing the affective aspects of

psychosis such as low mood and distress. The third factor was 'regaining functional and

occupational goals' and indicated the importance of social integration and overcoming social

stigma in recovery. The final factor was 'self-focused recovery' where external support was

deemed less important than internal resources. This study provided a useful addition to the

recovery research by using a methodology which aims to highlight differing view-points,

although the four factors explained a modest 36% of the variance and therefore implications

are tentative, as the authors acknowledge.

Recovery-oriented Services

Historically, mental health services focussed principally on achieving clinical

recovery. In the last decade, personal recovery has become a prominent agenda underlying

the design of some mental health services both within the UK and internationally (John,

Jeffries, Acuna-Rivera, Warren & Simonds, 2014). Personal recovery philosophy is also now

included within key policies such as No Health Without Mental Health, (2011). This is due

largely to advocates of the survivor movement campaigning for changes in the treatment of

service-users and for the wider concepts of personal recovery to be implemented (Resnick et

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al., 2005). However, many organisations have not yet implemented recovery-oriented

services and there is not a common understanding of what such a service should look like.

Each year more people access mental health services for the first time, although it is

difficult to know precisely how many (Department of Health, 2014). Recovery is quite a

radical change in orientation from doctor-led care to patient self-advocacy and it provides a

challenge to the idea that mental health issues are intractable and the person has little agency.

Therefore, it is important to understand public constructions of mental health recovery as this

is vital to understanding the current context in which changes are proposed to take place. If

public expectations are not congruent with the service provision, this could lead to a failure to

engage with the service, dropout, or a lack of progress. Research with the lay population is

also important because it could help to inform the ongoing development and delivery of

services.

Lay Perceptions of Recovery

Currently, there is a very small literature on lay perceptions of recovery. Barczyk

(2014) investigated the relationship between the public's belief in the possibility of recovery

and stigma towards people experiencing mental illness in the United States. Stigma is

believed to be the reason that only one third of people experiencing mental health problems

will seek treatment (Kessler et al., 2001). Stigma can also be internalized by the person

experiencing mental health problems and the impact of this can be reduced self-esteem and

self-efficacy (Bathje & Pryor, 2011). These reductions are thought to be due to the

expectation of stigmatization and awareness of negative public opinion rather than the

presence of a psychiatric diagnosis alone (Corrigan & Watson, 2002; Harvey, 2001).

Participants in Barcyzk's study read vignettes depicting alcohol dependence, major

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depression, schizophrenia and a "troubled person" not fitting any DSM-IV categories. Belief

in the potential of recovery was measured simply by asking participants how likely they

thought it was that the person in the vignette's situation might improve with treatment. They

were asked to respond on a four-point scale from 'very likely' to 'not likely at all'. Stigma

around mental illness was assessed by the participants' desired social distance which gauges

how much contact the person would desire with a person with mental health problems. As

such, it is a way of gauging prejudice. Belief in recovery was assessed across all vignettes,

not for each one specifically. Results showed that belief in the potential of recovery varied

with 46.8% believing that recovery was very likely and 48.4% believing that it was less than

very likely (i.e. somewhat likely, somewhat unlikely and not likely at all). Where participants

did not believe in the potential of recovery, higher levels of social distance were found,

indicating that respondents were more likely to distance themselves from people who they

believed had a mental health problem from which recovery was not possible. The authors of

this study stipulate the importance of educating the public on the likelihood of recovery from

mental health problems in order to reduce stigma and social distancing. A limitation of this

study is that the authors presented perceived likelihood of recovery across the conditions

described in the vignettes. There may be important differences in how particular mental

illnesses are perceived by the public that are masked by this analysis.

Adewuya and Makanjuola (2008) examined attitudes towards mental health, recovery

and social distance in Nigeria by conducting semi-structured interviews with 2078

participants. Participants were asked to choose one of four categories which represented their

perception of the usual progression of mental illness in general. The four options were

'complete cure', 'partial cure', 'persistence' or 'deterioration'. The latter two options were

classified as a poor prognosis, 'partial cure' as a fair prognosis and 'complete cure' as a good

prognosis. Most respondents (53.4%) rated the prognosis as fair, followed by a poor

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prognosis (37.1%) and finally a good prognosis (9.5%). Similar to Barczyk (2014), a negative

view of recovery (i.e. poor prognosis) was correlated with higher desired social distance. A

key limitation of this study was that no description of mental illness was given and

participants were asked to rate their ideas of prognosis across mental illnesses. Like Barcyzk

(2014), the assessment of recovery was very limited and focused on the clinical idea of 'cure'

rather than living with symptoms.

Wood, Birtel, Alsawy, Pyle and Morrison (2014) used data from the UK 2008 Office

of National Statistics opinions survey to assess stigmatising attitudes in the lay population

across three psychiatric conditions: schizophrenia, depression and anxiety. All 1064

participants were asked to rate statements on a five-point scale for each of the three

diagnoses. The statements included 'would not improve if given treatment', 'will never

recover fully' and 'could pull themselves together if they wanted'. Forty-four percent of

respondents agreed that those with schizophrenia would never fully recover, and 26% agreed

that those with depression would never fully recover. Fifteen percent agreed that those with

schizophrenia would not improve with treatment and 18% agreed that those with depression

would not improve with treatment. They also found that schizophrenia was associated with

the most negative stereotypes and recovery was deemed less likely than for both depression

and anxiety. This study has provided some useful information about beliefs in recovery from

different mental health problems. However, respondents gave their opinions based only upon

a diagnostic label which may produce different constructions compared to a description of the

features of the condition. In sum, these three studies do not illuminate constructions of

recovery from specific conditions; instead, they ask respondents to rate simple statements

about recovery as a single idea rather than a multifaceted concept. Different methodology is

required to address this.

Current Study

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There is currently very limited research into how the general public view recovery.

This is an important gap in the research for two main reasons. Firstly, Deegan (1988) posits

the importance of engagement with recovery-focussed services because recovery is a difficult

process which involves accepting and overcoming new challenges. Research is needed to

understand how lay people, who could be potential service users or significant others of those

who use services, conceptualise recovery because this will inform potential issues in

engagement and outcome. That is, it will indicate any potential barriers to engagement and, in

turn, indicate potential solutions to these barriers. Secondly, research (e.g. Adequya &

Makanjuola, 2008; Barcyzk, 2014) has shown that public perceptions of recovery are related

to levels of stigma and social distancing, such that where recovery is deemed less likely,

desired social distance increases. It is important for researchers to understand in more depth

how lay people construct recovery in different conditions as this may have an impact on

stigma reduction interventions.

The current study investigated lay constructions of recovery from the symptoms

associated with two mental health conditions; depression and psychosis. It was considered

useful to focus on both of these conditions as their symptoms vary in prevalence and

therefore may be deemed to differ in severity and intractability. There is also limited

understanding of recovery from depression because most published work on mental health

recovery has focussed on psychosis. Specific hypotheses were not tested as the study was

exploratory in nature. The general research question was "How do lay people conceptualize

recovery from the symptoms of depression and psychosis?"

Method

General Overview of Q Methodology

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Q methodology was originally developed by Stephenson (1953) as a way to assess

subjective view-points. It is an exploratory technique that can be useful when aiming to

uncover participants' beliefs and values (Baker, 2006). Q methodology combines qualitative

and quantitative research methods and uses a "by-person factor analysis to identify groups of

participants who make sense of a pool of items in comparable ways" (Watts & Stenner, 2005,

p. 68).

All studies using Q methodology have two main features in common. The first is that

data is collected in the form of Q sorts. A Q sort is where participants sort a collection of

statements or ideas prepared by the researcher along a subjective dimension, such as

'agree/disagree' or 'like/dislike' (Watts & Stenner, 2012). The way in which the participant

sorts the statements provides an illustration of their view on the particular topic being

investigated. The second main feature of Q methodology is that the Q sorts are inter-

correlated and by-person factor analysis is used to identify similar ways in which groups of

participants sorted the statements or ideas. This allows any shared understanding of the

concept under investigation to be identified.

Q methodology has been used by researchers to investigate service-user recovery

from psychosis (Wood et al., 2013) and professional's view-points on optimal mental health

(Zeldow & Bennett, 1997). Q methodology was deemed the most appropriate method for this

study for two main reasons. First, the general research question was broad, indicating that a

broad method of data collection and analysis would likely be the most appropriate. Secondly,

the topic area was novel and most participants may not have fully formed opinions on it.

Therefore, thematic analysis was deemed to have too little structure for participants, while

exploratory factor analysis was deemed to constrain participants too much through the use of

measures which would not have been designed specifically for this study.

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Q Set Design and Content

The Q set is the set of statements or ideas which are prepared by the researcher and

given to the participant to sort. In this study, the Q set was made up of 47 statements

generated from three different sources, which provided possible view-points related to

recovery. The first series of items emerged from a literature review (Palmer, 2014) which

aimed to identify the key themes within current mental health recovery research. The review

focussed on eight prominent models of mental health recovery derived from primary research

with service-users (Andreson, Oades & Caputi, 2003; Davidson & Strauss, 1992; Deegan,

1988; Leamy, Bird, Le Boutillier, Williams & Slade, 2011; Resnick et al., 2005; Simonds,

Pons, Stone, Warren & John, 2013; Spaniol, Wewiorski, Gagne & Anthony, 2002; Young &

Ensing, 1999). The second source of statements for the Q set resulted from discussions with

colleagues about what the anti-thesis of recovery might be. These discussions involved

reading through the list of statements gathered from the literature review and considering

whether each item could represent the anti-thesis of recovery if reversed or re-phrased. It was

important to include items in the Q set which could be considered the antithesis of current

understanding of recovery to ensure that the full range of possible view-points on recovery

were included. These items also helped to ensure that the Q set was as balanced as possible.

One example of such an item is "Recovery would just happen over time - I wouldn't need to

do anything". The third source of statements were pilot participants who were shown a pilot

Q set and asked to identify any ideas about recovery they thought should also be included. An

example of an item included as a result of the pilot participants is "Recovery would mean

accepting there are things I can no longer do".

Themes from these various sources were then re-framed into ideas for statements

relating to mental health recovery. This yielded a set of 60 statements. The statements then

underwent a process of development and re-design until it was felt that they were all relevant

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to the concept of recovery and they covered all of the key aspects discussed during the

development process without repetition. The resulting Q set was piloted again and the

meaning of two of the statements was queried. These were subsequently re-phrased and

deemed acceptable. The final set contained 47 items (see Appendix A). Thirty-one of these

originated from models of recovery, ten from discussions with colleagues about the anti-

thesis of recovery and six from the pilot participants.

Study Pilot

The study was piloted on two participants who were asked for feedback regarding the

statement list, the study instructions and the process of sorting. Both participants suggested

minor changes to some items in the Q set and both agreed that the instructions were clear and

easy to follow. Both participants were able to complete the Q sort and were satisfied with the

result, stating that the final arrangement of statements provided an accurate description of

their view-point. Changes were made to study materials based upon their feedback, as

indicated above.

Vignettes

The study included two stimulus vignettes, one of which depicted symptoms of

depression and the other of psychosis (see Appendix B). Vignettes were included to ensure

that participants were thinking about a particular set of difficulties when they sorted the

statements, rather than their own personal ideas of a particular mental health problem. Two

vignettes were included because it was deemed useful to assess lay constructions of recovery

from two different sets of symptoms within the same study. Participants read only one of

these vignettes and then completed one Q sort. The vignettes were based upon descriptions of

depression and psychosis from the website www.mind.com whose content is written to be

accessible and supportive to the general public. The literacy level required to read the

vignettes was established as being appropriate for those who had experienced 8.6 and 8.7

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years of education respectively, equating to the expected reading ability level of a 12-13 year

old. The two vignettes were sent to seven mental health experts. All independently

considered that the first depicted symptoms of depression and the second of psychosis thus

demonstrating excellent inter-rater reliability.

Participants

Seventy-nine participants were recruited from a range of demographic backgrounds to

ensure the study captured a wide range of view-points on recovery. Participants were

recruited via personal contacts using a snowballing recruitment strategy. Participants were

not eligible if they had ever worked for or received treatment from a specialist mental health

service. This led to four participants being ineligible. A further three participants were

excluded because their Q sorts had not been completed fully or correctly. The final sample

included in analysis therefore, was 72 participants, 36 of whom completed the Q sort task

having read the depression vignette and 36 having read the psychosis vignette. Participant

demographics were collected using a brief questionnaire (see Appendix C). It was not

important for the two groups to be comparable as this was not an aim of the study; instead it

was important to achieve variability within each group. See Table 1 for the demographic

characteristics of both groups.

Table 1Demographic characteristics of both groups

Depression PsychosisAgeMean 33.25 39.06SD; range 12.40; 24-63 16.11; 21-73GenderMale (%) 18 (50) 14 (38.89)Female (%) 18 (50) 22 (61.11)EthnicityWhite British (%) 27 (75) 30 (83.33)Other (%) 9 (25) 6 (16.6)EducationUndergraduate/Postgraduate 25 (69.44) 20 (55.55%)

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degree (%)A Level 5 (13.89) 6 (16.67)GCSE 6 (16.67) 8 (22.22)None 0 (0) 2 (5.55)

Participants in both groups held a range of occupations (see Table 2 for categorised

occupations and Appendix D for the full list of occupations).

Table 2Office of National Statistic categories of occupation for both groupsOccupation Category Depression PsychosisAdministration and secretarial occupations

3 8

Associate professional and technical occupations

12 8

Caring, leisure and other service occupations

1 1

Elementary occupations 1 0Managers, directors and senior officials

3 4

None 4 4Process, plant and machine operatives

0 1

Professional occupations

6 6

Sales and customer service occupations

6 4

Administering the Q Sort

The study was approved by the Faculty of Arts and Human Sciences Ethics

Committee (see Appendix E). Participation was voluntary, confidential and participants were

informed that they could withdraw without consequence. Once recruited to the study,

participants were either given or posted a pack of study materials to complete. All

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participants completed the Q sorts in their own time away from the researcher. It is possible

that extraneous variables may have been associated with participants completing the sort in

an uncontrolled environment but the implications of completing the study in a controlled

environment were deemed too demanding on participants, especially given the time

constraints within the project. The packs given to participants included detailed instructions

on how to complete the Q sort (see Appendix F). Participants were asked first to read a

Participant Information Form (see Appendix G). Consent was assumed if the person

completed the Q sort and returned the materials. After completing the demographics

questions, participants were asked to read the vignette in the pack. Participants were asked to

imagine that they were experiencing the mental health problem described in the vignette and

to think about what recovery might mean for them in that situation. To help participants to

engage with the somewhat abstract idea of 'recovery', two examples of what recovery can

mean were given; one of a common cold and the other a broken leg to depict that recovery

can have different meanings depending on the context. These were provided due to concerns

that participants may not know what is meant by recovery and not feel able to complete the

task. Participants were given 47 statements about recovery on individual numbered cards and

asked to sort them into piles depending on whether they agreed or disagreed with them. There

was also a third optional 'neutral' pile. Starting with their 'agree' pile, then the 'disagree' pile

and finally the 'neutral' pile, participants were asked to place the statements onto the sorting

grid depending on how much they agreed, disagreed or felt neutrally about them. Although

participants may have had unequal agree, disagree and neutral piles initially, the Q sort

process forced them to sort the statements in a particular shape. This meant that statements

were sorted by agreement or disagreement of items relative to each other rather than by

absolute agreement. An 11-point scale was used for the forced distribution, with rankings

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from -5 (strongly disagree) to +5 (strongly agree). See Figure 1 for a diagram of the sorting

grid.

Figure 1. Q Sort grid

Participants were encouraged to keep moving the statements around until they felt satisfied

with where they were placed. Participants were then asked to copy the number of each

statement card onto the blank grid ensuring that every square had a number in it that was not

repeated elsewhere. Participants then posted or handed the sorts back after they had read the

debrief sheet (see Appendix H).

Results

Statistical Analysis

Analysis in Q methodology includes three main steps. Firstly, factors are extracted

from Q sorts and rotated. In this study, all factors were extracted using Horst's 5.5 Centroid

Factor Analysis with iterative solutions for communalities (Horst, 1965). This was used

because it is a more refined approach and does not show some irregularities which can

sometimes be found when using Brown's (1980) customary method of Centroid Factor

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Analysis (Schmolck, 2014a). Once extracted, factors were rotated using Varimax Rotation,

meaning that the software positioned the factors such that they account for the maximum

amount of the study variance, according to statistical criteria (Watts & Stenner, 2012).

Varimax rotation is the widely-used alternative to by-hand factor rotation (Watts & Stenner,

2012). Secondly, each rotated factor is represented by a factor array which looks like a single

Q sort and is created using weighted averaging from the individual Q sorts which loaded

significantly onto the factor. Finally, these factor arrays are interpreted holistically to gain an

understanding of the view-point of participants who load onto that factor. Each of these

stages is described in more detail below.

Two groups of 36 Q sorts were analysed for this study. Each group was separately

inter-correlated and subjected to a by-person factor analysis using computer software called

PQ Method (Schmolck, 2014b).

Factor extraction and rotation. Factor extraction and rotation followed the same

criteria for both groups. To be included in the solution, factors needed to satisfy the Kaiser-

Guttman criteria (Guttman, 1954) by having rotated eigenvalues greater than 1.00. In

addition, they needed to satisfy Humphrey’s rule, where the two highest factor loadings

multiplied together should not exceed the standard error. Factors also required two or more

significantly loading Q sorts (Watts & Stenner, 2012). As is customary in Q methodology

(Brown, 1980), significantly loading Q sorts at the 0.01 level were calculated using the

equation 2.58 x (1÷√no. items in Q set) = 0.38. Solutions were selected where a ‘healthy’

amount of the study variance was accounted for by the extracted factors (at least 35-40% of

the study variance, Kline 1994), where correlations between the factors were as low as

possible and where as many Q sorts as possible loaded onto the factors. Q sorts which load

significantly onto the same factor exhibit very similar patterns of sorting, indicating that they

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are likely to have similar view-points on recovery. Put simply, a factor represents a shared

view-point.

From the depression condition, three factors were extracted and rotated. These three

factors together explained 59% of the study variance. Seventeen of the 36 Q sorts loaded

significantly onto one of these three factors (with factor loadings of +-.38 or above indicating

significance at the p < .01 level). While there were no non-significant Q sorts, 19 were

confounded, meaning that they loaded significantly onto more than one of the factors. These

19 confounded sorts were removed from analysis and not included in factor interpretation.

See Table 3 for Q sorts significantly loading onto the three study factors.

Table 3Q sorts loading significantly onto the three study factors for depression vignette. Factor Number Q sort numbers Total Cumulative Total1 12, 15, 17, 22, 26,

30, 347 7

2 4, 6, 8, 11, 13, 20, 25, 35

8 15

3 16, 18 2 17Non-significant Q sorts

0 17

Confounded Q sorts 1, 2, 3, 5, 7, 9, 10, 14, 19, 21, 23, 24, 27, 28, 29, 31, 32, 33, 36

19 36

It should be noted that the correlations between these three factors were significant,

indicating that the factors do not represent clear distinct ideas. This solution was retained

despite significant correlations because the three view-points, although overlapping, were all

deemed useful. See Table 4 for correlations between the three factors, where .38 indicates a

significant correlation at the p<.01 level.

Table 4Correlations between three factors from the depression vignette

Factor 1 Factor 2 Factor 3

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Factor 1 1.00Factor 2 .62 1.000Factor 3 .46 .50 1.00

From the psychosis condition, two factors were extracted and rotated. These two

factors together explained 47% of the study variance. 26 of the 36 Q-sorts loaded

significantly onto one of these two factors (with factor loading of +-.38 or above indicating

significance at the p<.01 level). Two Q sorts did not load significantly onto either factor and

eight Q sorts were confounded. See Table 5 for Q sorts significantly loading onto the two

study factors.

Table 5Q sorts loading significantly onto the two study factors for psychosis vignette. Factor Number Q sort numbers Total Cumulative Total1 2, 3, 4, 7, 8, 9, 10,

13, 14, 16, 17, 18, 19, 25, 31, 33, 34, 35, 36

19 19

2 1, 6, 12, 15, 24, 27, 32

7 26

Non-significant Q sorts

21, 26 2 28

Confounded Q sorts 5, 11, 20, 22, 23, 28, 29, 30

8 36

Again, these two factors were significantly correlated (.45), indicating that there was some

overlap in the view-points of participants loading significantly onto each factor. As for the

factor solution from the depression vignettes, this two-factor solution was retained because

the two view-points were subtly different and provided useful insights into lay constructions

of recovery.

Factor arrays. Q sorts which loaded onto a factor were then merged to form a single

Q sort. This represents the typical sort of all those loading onto the factor and is called the

factor array. It is reached using weighted averaging, where sorts which loaded higher on the

25

factor were given more weight than those which loaded lower. This is because sorts which

loaded higher are more representative of the factor. See Appendix I for the factor arrays in

both the depression and psychosis conditions.

Factor interpretation. Factor interpretation involves looking holistically at the

pattern of items within each factor array. The overall aim of factor analysis is to discover,

understand and explain the point of view shared by the people who loaded significantly onto

that factor. Below, the interpretation of the depression factor arrays is presented followed by

interpretation of the psychosis factor arrays. Interpretation involved looking at items which

are sorted higher or lower (i.e. have stronger agreement/disagreement) than other items in the

same factor array. Interpretation does not focus solely on statements sorted at the extremes as

the location of all the statements is deemed important. It is of interest where the items are

ranked in relation to each other, not just where they are placed on the grid.

Factor interpretation is discussed in the same way for each factor. Each factor has a

title and a brief summary followed by the demographics of participants loading onto the

factor. A full description of the factor is then presented followed by comparison with other

factors in the same condition. Where necessary, the ranking of the statement is denoted by the

number of the statement followed by the ranking of that statement (e.g. 12: -5 indicating that

statement 12 was sorted at the -5 point on the grid).

Depression Vignette Factor Interpretation

Factor one. Active participation is more central to recovery than professional input.

Participants on factor one deemed active participation and feeling stronger when faced with

difficulties as central to recovery. They agreed that recovery was possible and deemed

professional input as relatively less central. They did not agree that symptom eradication was

necessary for recovery.

26

Factor one had a rotated eigenvalue of 11.75 and explained 25% of the study variance.

Seven participants loaded significantly onto this factor. They had an average age of 34.43,

57.14% (N = 4) were female, 71.43% (N = 5) held an undergraduate or postgraduate degree

and 71.43% (N = 5) were White British.

The most defining statements on this factor were that recovery means feeling stronger

when faced with difficulties (43: +5) and that active participation is necessary for recovery

(27: +5; 15:-5; 16: -5). Participants agreed that doing things which make them feel better

would aid recovery (11: +4) and that motivation (38: +3), hope (1: +3) and optimism (46: +2)

were central to recovery. They also agreed that recovery could mean both improved self-

confidence (23: +4) and self-esteem (33: +2). Participants deemed support from loved ones

(3: +3) and meeting others who have had similar experiences (22: +2) as helpful to recovery.

While participants agreed strongly that recovery was possible (42: -4), they did not agree that

medication (5: -5), professional input (4: -3; 40: -3) or treatment (10: -3) were as central to

recovery as active participation. The elimination of symptoms was not deemed central to

recovery (30: -2; 2: -2; 45: +1; 39: 0) although participants agreed that recovery could mean

having less symptoms (29: +1). Indeed, participants agreed that recovery meant finding

meaning in life despite symptoms (34: +3).

Relative to the other two factors from the depression condition, participants on factor

one deemed active participation as more central to recovery. They also agreed relatively more

that rebuilding their lives (18: -1), taking responsibility for their lives (41: 1) and developing

new skills (19: 0) were central to recovery. Participants agreed relatively less than those

loading onto the other two factors that professional input, talking about their problems (14:

+1), taking control of their lives (26: -1) and resilience (36: -1) were central to recovery.

27

Factor two. Professional support is central to the gradual process of recovery.

Participants on factor two deemed professional help central to recovery and agreed that the

eradication of symptoms was not necessary for recovery to occur. They agreed that recovery

was possible and could be defined as increased confidence and strength when faced with

symptoms and difficulties.

Factor two had a rotated eigenvalue of 10.34 and explained 22% of the study

variance. Eight participants loaded significantly onto this factor. They had an average age of

35.13, were 62.5% male (N = 5), 75% (N = 6) held an undergraduate or postgraduate degree

and 87.5% (N = 7) were White British.

The most defining statements on this factor were that recovery would be gradual (37:

+5) and that it would be possible without a cure (39: +5). Feeling confident at managing

symptoms (32: +4) and feeling stronger when faced with difficulties (43: +4) were deemed

central to recovery, while participants disagreed that recovery meant having no more

symptoms (2: -2). Participants deemed professional help (4: +4; 40: +3; 10: +1) and support

from loved ones (3:+3) as central to recovery. Accepting the illness (13: +4) and taking an

active role in recovery (27: +3; 15: -5; 16: -4) were also seen as central components. While

participants agreed that recovery was possible (42: -5), they did not agree that recovery was

about achieving a good quality of life (7: -4), good relationships with others (9: -4), goals (6:

-3), being able to work or study (8: -3) or developing new skills (19: -2).

Relative to the other two factors, participants on factor two deemed professional help

as more central to recovery and agreed relatively more that medication would be necessary

for recovery (5: -1). They also deemed acceptance of the illness (13: +4) and confidence at

managing symptoms as relatively more central to recovery. Hope was deemed relatively less

central (1: 0) than on the other two factors as was the idea that recovery means finding

28

meaning in life despite symptoms (34: -1). Although taking an active role in recovery was

deemed central by participants on factor two, participants on the other two factors deemed it

more so.

Factor three. Recovery means having a good quality of life and taking control is

central to this. Achieving a good quality of life was deemed a central aim of recovery by

those loading onto factor three and participants agreed that taking control and an active role

would help them to achieve this. The presence or absence of symptoms and treatment were

not deemed central to recovery.

Factor three had a rotated eigenvalue of 5.64 and explained 12% of the study

variance. Two participants loaded significantly onto this factor. Both were female and held an

undergraduate degree. They were aged 34 and 27 and were White Irish and White British

respectively.

The most defining statements on this factor were that a good quality of life (7: +5)

and achieving goals (6: +3) were aims of recovery and that taking control was necessary for

this to occur (26: +5). Participants deemed taking an active role as central to recovery (27:

+4; 15: -5, 16: -5) as well as motivation (38: +4), resilience (36: +3) and hope (1: +3).

Participants agreed that acceptance of the illness (13: +3) and talking about the problems (14:

+4) would aid recovery. Participants disagreed that meeting others with the same experiences

would be helpful for recovery (22: -4) and that rebuilding their lives (18: -4) or becoming a

different person (47: -3) were central to recovery. Participants agreed that recovery was

possible (42: -4) but deemed professional input (4: +1; 40: -1) and treatment (10: +2) as

relatively less central in comparison to taking personal control. Participants did not deem the

presence or absence of symptoms (45: +1; 39: 0; 2: 0; 29: 0) as central to recovery and

29

instead agreed that finding meaning in life despite symptoms (34: +2) was a central

component of recovery.

Relative to the other two factors, participants on factor three deemed achieving goals,

a good quality of life, being able to work or study (8: -1) and having good relationships with

others (9: -1) as more central to recovery. They also deemed taking control (26: +5) as more

central to recovery and agreed more strongly that improving independence (20: +1) and

returning to normal (30: +2) were markers of recovery. Participants on factor three deemed

support from loved ones (3: 0), improved confidence at managing symptoms (32: -1) and

feeling stronger when faced with difficulties (43:0) as relatively less central than those on the

other factors. They also deemed rebuilding their lives (18: -4), developing new skills (19: -3)

and having better self-esteem (33: -2) as relatively less central to recovery and agreed

relatively less that meeting others with similar experiences (22: -4) and doing things which

make them feel better (11: 0) would aid recovery. Finally, participants agreed relatively less

than participants on the other two factors that recovery would be a gradual process (37: +2)

and that optimism would be necessary (46: -2).

Psychosis Vignette Factor Interpretation

Factor one. Professional help and active participation are central to recovery.

Participants on factor one deemed professional help and taking an active role as central to

recovery. They agreed strongly that recovery would be possible and did not agree that

symptoms needed to be eradicated in order for recovery to occur.

Factor one had a rotated eigenvalue of 15.04 and explained 32% of the study variance.

Nineteen participants loaded significantly onto this factor. They had an average age of 40.05,

were 52.64% female (N = 10), 63.16% (N = 12) held an undergraduate or postgraduate

degree and 89.47% (N = 17) were White British.

30

The most defining statements on this factor were that professional help and treatment

(4: +5; 40: +4; 10: +4) as well as active participation (27: +5; 15: -5; 16: -5) were central to

recovery. Support from loved ones (3: +3) and acceptance of the illness (13: +4) were also

deemed central. Participants agreed that recovery was possible (42: -4) and would be a

gradual process (37: +4) from which setbacks may occur (44: +3). Participants disagreed that

it would be necessary to become a different person in order to recover (47: -4). Learning

about difficulties (31: +2) was deemed central to recovery, although again less so than

professional input. Participants on this factor did not deem symptom eradication (2: -4; 45:

+1; 39: +3) and returning to normal (30: -3) to be as central to recovery as active participation

and professional input.

Relative to other statements, participants agreed less strongly that recovery meant

achieving personal goals (9: -3), a good quality of life (7: -2), being able to work or study (8:

-2), having good relationships with others (9: -3), developing new skills (19: -1) or taking up

new challenges (25: -1). Relative to participants on factor two, participants agreed less

strongly that personal changes such as increasing independence (20: -2) and developing a

new identity (12: -2) were central to recovery. Although participants agreed that taking an

active role was central to recovery, they deemed doing things which make them feel better

(11: +1), making own life choices (35: 0) and taking responsibility (41: +1) as relatively less

central than those on factor two.

Factor two. Recovery is about returning to normal and active participation is

essential. Participants on factor two constructed recovery as a return to normal through active

participation. Recovery was viewed as possible although likely to involve setbacks.

Professional input was deemed less central to recovery than taking control, making own life

choices and taking responsibility.

31

Factor two had a rotated eigenvalue of 7.05 and explained 15% of the study variance.

Seven participants loaded significantly onto this factor. Participants had an average age of 27,

were 71.43% (N = 5) female, 85.71 (N = 6) held an undergraduate or postgraduate degree and

57.15% (N = 4) were White British.

Factor two comprised a different construction of recovery to factor one. The most

defining statements in this factor were that recovery meant returning to normal (30: +5) and

that taking an active role was essential (27: +5; 15: -4; 16: -4; 11: +3). In addition,

participants agreed that recovery meant taking control (26: +4), responsibility (41: +3) and

being able to make their own life choices (35: +4). Accepting the illness (13: +3) and learning

about the difficulties (31: +2) were seen as central to recovery although less so than some

other components. Participants agreed strongly that recovery was possible (42: -5), although

likely to involve setbacks (44: +3), and disagreed that they would need to become a different

person to recover (47: -5). Medication (5: -4), professional help (4: -3) and treatment (10: -3)

were deemed less central components of recovery than active participation in the process.

Keeping friendships (28: +2), motivation (38: +2) and hope (1: +1) were agreed to be part of,

but less central to, recovery.

Relative to factor one, participants on factor two deemed improved self-confidence

(23: +2) and self-esteem (33: +3) as more central components of recovery as well as returning

to normal (30: +5) and having no more symptoms (2: +1). Participants agreed less than those

on factor one that recovery could occur despite remaining symptoms (45: -2; 39: -1) and that

talking about problems (14: 0), professional help (4: -3), treatment (10: -3) and medication (5:

-4) were central to recovery. Support from loved ones (3: +1) and developing confidence at

managing symptoms (32:-1) were also deemed less central to recovery by participants

loading onto factor two than on factor one. Participants on both factors deemed achieving

personal goals, (6: -2), a good quality of life (7: -3), good relationships with others (9: -2),

32

being able to work or study (8: -2), finding meaning in life despite having symptoms (34: -1)

and managing symptoms with more confidence (32: -1) relatively less central to recovery

than other aspects.

Discussion

This study investigated lay constructions of recovery from the symptoms of

depression and psychosis using Q methodology. The depression vignette elicited three related

but subtly different constructions of recovery and the psychosis vignette elicited two. The

three constructions of recovery from the symptoms of depression overlapped to some extent:

participants loading onto all three deemed active participation to be central to recovery and

agreed that recovery was possible. The constructions differed in the centrality assigned to

professional help and symptom eradication. Professional help was deemed most central by

participants loading onto factor two, followed by factor three with those on factor one

deeming it the least central. Participants loading onto factors one and two agreed that

symptom eradication was not the aim of recovery, while participants loading on factor three

neither agreed nor disagreed strongly with this. Other aims of recovery included improved

self-esteem and self-confidence, improved confidence at managing difficulties in the future

and achieving a good quality of life.

The two constructions of recovery from the symptoms of psychosis also overlapped to

some extent with participants loading onto both factors deeming active participation as

central to recovery and agreeing that recovery was possible. They also agreed that accepting

and learning about the illness were central to recovery. Participants loading onto both factors

deemed some common goals for recovery such as achieving personal goals and a good

quality of life as relatively less central to recovery than other components. Differences

between the two constructions emerged around the centrality assigned to professional help

33

and symptom eradication. Participants loading onto factor one deemed professional help but

not symptom eradication central whilst those on factor two deemed returning to normal more

central to recovery than professional input.

When comparing constructions of recovery from depression and psychosis, some

similarities are evident. Participants across factors agreed that recovery was possible and

deemed active participation as central to recovery. None of the participants loading onto any

of the factor arrays believed that it would be necessary to become a different person in order

to recover. The main differences between the five factors were the centrality assigned to

professional input and the eradication of symptoms; depression factors two and three and

psychosis factor two deemed professional help as relatively more central to recovery than

other factors. The eradication of symptoms was deemed relatively more central to recovery

by participants loading on psychosis factor two than participants loading on other factors.

Comparison of findings with previous research

Depression vs. psychosis. Previous research (e.g. Angermeyer & Matschinger, 1996;

Lauber, Nordt & Rossler, 2005; Riedel-Heller, Matschinger & Angermeyer, 2005) has

demonstrated differences in public perceptions of appropriate treatment for psychosis when

compared with depression. For these disorders, although medical treatments such as

pharmacological interventions are commonly viewed unfavourably, they are generally

deemed more useful by the lay population for those with schizophrenia than depression

(Peluso & Blay, 2009). Similarly, in the current study, medication was ranked as more central

by participants loading on one of the psychosis factors (+2; -4) than any of the depression

factors (-5; -1; -2 respectively). A large difference between the centrality assigned to

medication was observed between the two psychosis factors. The average age of participants

loading significantly onto factor one was higher than those loading onto factor two. It is

34

possible that older people in general agree more strongly than younger people that medication

is central to recovery and this could potentially imply that older people may hold more values

in line with clinical recovery than younger people. However, this is a very tentative

suggestion that would require development through further research.

Q methodological study. Comparing the results of the present study to the only other

related study that utilised Q methodology (Wood et al., 2013), it was interesting to note that

their third factor, 'regaining functional and occupational goals' was deemed more central by

participants in the depression factors rather than the psychosis factors. Their study involved

service-users who had experienced psychosis but as noted above, these goals were ranked as

of relatively low importance in both psychosis factors. This potentially indicates a difference

between service-user and lay constructions of recovery from the symptoms of psychosis. The

final factor in Wood et al.’s study, 'self-focused support' was similar to the depression factor

one and the psychosis factor two as participants loading onto both deemed internal resources

as more central to recovery than professional support. From comparison of these two studies

it seems that lay constructions of recovery have some aspects in common with service-users',

largely a shared understanding of the importance of support and personal input. However,

there were less similarities around the importance of regaining occupational goals,

particularly among participants who read the psychosis vignette. It would perhaps be

expected that lay people may have an understanding of recovery from the symptoms of

depression more in keeping with service-users’ experiences than from symptoms of psychosis

due to the common nature of depressive symptoms.

Lay perceptions of recovery. Comparing the results of this study to previous

research on lay perceptions of recovery highlights one key difference. In the studies by

Barcyzk (2014) and Adequya and Makanjuola (2008), respondents gave varied views on the

possibility of recovery, with only half of each study sample indicating that the possibility of

35

recovery was 'very likely' or 'fair'. In the current study, participants across all factors in both

conditions agreed strongly that recovery was possible. This is a positive finding because

people agreeing that recovery is possible are less likely to be stigmatizing to others and

therefore potentially less self-stigmatizing if they experience mental distress (Barcyzk, 2014;

Adequya & Makanjuola, 2008). A more hopeful outlook on recovery is also likely to be of

benefit to the recovery process should these people become service-users because hope is

central to recovery (Deegan, 1988). Given the vital role of hope in recovery as well as the

negative impacts of a lack of hope in terms of stigmatization, strong agreement with the

possibility of recovery seems to be a very positive finding. It should be noted that the

difference in the results from these two previous studies and the current study could be a

result of the different cultural settings in which the studies were carried out. It is likely that

mental health services in the UK are more easily accessed than those in Nigeria and the US,

especially given the conception of Improving Access to Psychological Therapies, and this is

likely to lead to more people experiencing services themselves and through loved ones.

Therefore, the lay population in the UK may have more experience of positive recovery than

those in Nigeria and the US, leading to higher levels of hope regarding recovery.

Implications

By factor array. The central view in depression factor one was that active

participation is more central to recovery than professional input and symptom eradication.

While active participation and less focus on symptom eradication are ideas in keeping with

personal recovery, the relatively strong disagreement that professional input is necessary is

not in keeping with the collaborative ideas behind personal recovery. Adherents to this view-

point may attempt to avoid services and instead deal with difficulties themselves with support

from loved ones. The central view in depression factor two was that professional support is

central to recovery while symptom eradication is not. This perspective seems to span the gap

36

between personal and clinical recovery, with the centrality of professional input indicating a

construction of recovery more in keeping with clinical recovery but identified aims of

recovery (increased confidence and strength when faced with difficulties) and a lack of focus

on symptom eradication are more in keeping with personal recovery. Adherents to this

perspective are potentially likely to seek professional help and may be amenable to recovery-

focussed interventions. The central view in depression factor three was that recovery is about

achieving a good quality of live and taking control. The two participants who loaded onto this

factor demonstrated a construction of recovery in keeping with some key ideas within

personal recovery (Slade, 2009). That is, they deemed achieving a good quality of life as

central and while they did not agree strongly that symptom eradication or treatment were

central to recovery, neither did they disagree. Adherents to this perspective may find

collaborative engagement with recovery-focussed services relatively straightforward.

The central view in psychosis factor one was that professional input and active

participation are more central than symptom eradication and returning to normal. The

centrality assigned to active participation and professional input and the de-emphasis on

symptom eradication indicate a construction of recovery largely in keeping with personal

recovery. Participants with this construction may potentially be amenable to recovery-

focussed interventions. The central view in psychosis factor two was that a return to normal is

what constitutes recovery and that professional intervention and medication are less central

than active participation. This construction of recovery is potentially more in keeping with

clinical recovery although interestingly it places the person at the centre of this rather than

professionals. As in Depression factor one, participants with this perspective may avoid

engagement with services and instead deal with the issues themselves. It is possible that

holding this view might produce a pessimistic perspective if a perceived return to ‘normality’

does not occur.

37

Across factor arrays. The implications of this study for recovery-focussed mental

health services seem to be mixed. Participants in all factors constructed the idea of recovery

as possible and requiring active participation while there were varying views on the need for

professional input. As such, none of the participants demonstrated constructions of recovery

fully in keeping with clinical recovery, although some ideas related to clinical recovery were

deemed central. Instead, the constructions of lay people in this sample seem largely more in

keeping with constructions of personal recovery in research and policy. The strong agreement

that recovery is possible from the symptoms of both depression and psychosis is positive in

reducing stigma and social distancing. Also, the centrality assigned to active participation is

helpful for engagement. However, some participants did not agree that professional help was

necessary for recovery. One possibility is that people with this view might avoid seeking

support and future studies might ascertain if this is the case.

Strengths and Limitations

The current study had several strengths. To the author's knowledge, it is the first

investigation into lay constructions of recovery and had the added benefit of including the

symptoms of two different conditions. The Q set was developed in part from an extensive

body of work into service-user experiences of recovery and as such is based on lived

experience. The participants were from a wide range of demographic backgrounds which

meant that a range of views on recovery were gained. Another strength of the study is the

methodology: Q methodology in general is an appropriate method to study subjectivity but it

allows for a wider collection of subjectivity than other qualitative methods, making it ideal to

allow participants to explore their thinking about new and diverse topics, such as recovery.

A limitation of the study could be the relatively high correlations between the factors

suggesting that factors were not distinct, but instead represented overlapping view-points.

38

There are several possible reasons for this. Firstly, it is possible that lay perceptions of

recovery are not sufficiently diverse to allow for distinct factors to emerge. That is, there is

already significant agreement among the lay population about the recovery process. Indeed,

respondents did show strong agreement in their rankings for several statements, such as

agreeing strongly that personal input is required and that recovery would be possible.

Secondly, it is possible that the symptoms presented in the vignettes were not severe enough

to allow for diversity as both depicted symptoms of emerging mental illness. Potentially,

differing levels of agreement about the possibility of recovery may have been observed if

more severe and long-standing symptoms were presented. Finally, it is also possible that the

selection of statements for the Q set did not allow enough diversity for factors to be distinct.

However, this seems unlikely because although the analysis has uncovered some aspects of

recovery which virtually all participants agree on such as the centrality of personal input,

differences emerged around the centrality of professional input and symptom eradication.

This indicates that the Q set has been successful in measuring lay constructions of recovery

and has succeeded in allowing participants to highlight which components of recovery are

relatively more central for them given the cluster of symptoms within the vignette.

Future Research

The vignettes used in this study could be adapted in several ways for future research.

They could include more severe and long-standing symptoms of the two disorders to assess

whether this impacts upon lay constructions of recovery in general and to investigate whether

these constructions hold more diversity than in the current study. As a further development of

this, a future study could investigate lay perceptions of other mental health conditions. This

would be useful to investigate whether constructions of recovery are different for other

mental health conditions or whether constructions tend to remain constant across conditions.

The vignettes could also be adapted to include a child with symptoms of mental illness to

39

investigate whether the age of the person impacts constructions and parents could complete a

Q sort based on their constructions of recovery of their child. This may yield some interesting

information about lay constructions of recovery in younger people, particularly regarding the

balance between personal and professional input. Finally, the vignettes could be adapted to

investigate whether providing a diagnostic label impacts constructions of recovery. The

vignette in the current study contained a description of the symptoms of depression and

psychosis but no diagnostic label. Most research into perceptions of mental illnesses tends to

use either a diagnostic label (e.g. Wood et al., 2014) or a vignette with a diagnostic label

(Knesebeck, Angermeyer, Kofahl, Makowski & Mnich, 2014). Research has shown that the

diagnostic label itself can be a key part of the stigmatizing effects of mental illness

(Angermeyer & Matschinger, 2005) and it therefore makes sense that different attitudes may

emerge in the absence of such a label.

Aside from adaptations to the vignette, it would be useful to complete a similar study

with participants who are reluctant to access services, such as young men and the Asian

community with the aim of helping to empower them to affect their own changes and access

professional help where necessary. The study could also be adapted by conducting the Q sort

face to face. Whilst it is not essential for Q sorts to be undertaken face to face, it may be

interesting to conduct the sort in this way because participants would have the opportunity to

explain decision making which may enhance the qualitative interpretation of the findings. It

would be important to be aware of potential bias if sorting face to face as participants may

sort in the manner they think the researcher expects. The Q set could be developed in a future

study by using the results of the current study as a basis for a group discussion among lay

people about recovery which could identify additional items to be included.

40

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List of appendices for MRP Empirical Paper

Appendix A. Final Q-set

Appendix B. Depression and Psychosis Vignettes

Appendix C. Demographic Questionnaire

Appendix D. Full list of occupations for depression and psychosis groups

Appendix E. Favourable Ethical Opinion

Appendix F. Task Instructions

Appendix G. Participant Information Sheet

Appendix H. Debrief Sheet

Appendix I. Factor Arrays

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Appendix A. Final Q set

1. I could not recover without hope2. Recovery would mean having no symptoms3. I would need help from loved ones to recover4. I would need professional help to recover5. I would need medication to recover6. If I could achieve my goals I would have recovered7. If I had a good quality of life I would have recovered8. If I were able to work/study I would have recovered9. If I had good relationships with others I would have recovered 10. Recovery could not happen without treatment11. Doing things which make me feel better would help me recover12. Developing a new idea about who I am would help me recover13. Accepting that I have become ill would help me recover14. Talking about my problems would help me recover15. Recovery would just happen over time - I wouldn't need to do anything 16. Professionals would make me recover - I wouldn't need to do anything 17. Recovery would mean accepting there are things I can no longer do18. Recovery would mean rebuilding my life19. Recovery would mean developing new skills20. Recovery would mean increasing my independence21. Spirituality would be important in my recovery22. Meeting people who have had the same experiences as me would help me recover23. Recovery would mean increasing my self-confidence24. I would need to try new ways of coping in order to recover25. Recovery would mean taking up new challenges26. I would have to take control of my life in order to recover27. I would need to take an active role in my recovery28. Keeping my friendships would help me recover29. Recovery would mean having fewer symptoms30. Recovery would mean returning to normal31. Learning about my difficulties would help me recover32. Recovery means feeling confident at managing symptoms33. Recovery means having better self-esteem34. Recovery means finding meaning in life despite having symptoms 35. Recovery means being able to make my own life choices36. Recovery requires resilience37. Recovery would be a gradual process38. I would need to be motivated in order to recover39. Recovery would be possible even if the condition was not cured40. Recovery would require working with professionals41. Recovery would mean taking responsibility for my life

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42. It would not be possible for me to recover from these symptoms43. Recovery means feeling stronger when faced with difficulties44. Recovery would not be straightforward - there would be setbacks45. I could have some symptoms and still be recovered46. I could not recover if I weren't optimistic47. I would need to become a different person in order to recover

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Appendix B. Depression and Psychosis Vignettes

Imagine that you have recently started to feel tearful very often and have started to spend a lot of time in bed thinking. You find it very difficult to get out of bed in the mornings and frequently call in sick to work. Because of this you are at risk of losing your job. Your partner finds you very difficult to live with and cannot understand why you are not able to go to work if you are not physically unwell. You used to socialise with friends regularly but recently you have been staying at home almost all of the time and your friends are gradually giving up contacting you. You think that you have not achieved anything in your life and find the thought of coping in the future overwhelming. You do not have much of an appetite which has led to significant weight loss. Recently you have thought that life is not worth living.

Imagine that you have recently noticed a clicking sound coming from one room in your home. Sometimes you think you can hear people talking about what you are doing. You think that your movements and conversations are being recorded because the government are trying to gather evidence about you and you spend a lot of your time searching for the recording devices. You do not like to go outside because you think that the people recording you may be waiting for you. You have told your family and a couple of friends about your concerns but they say they cannot hear the noise or the voices. You are starting to wonder whether they may be part of the plot too. Your mind is consumed by these thoughts and worries and you feel unable to concentrate on anything else. You have lost your job due to non-attendance and have so far not applied for benefits. Your friends have started to avoid you and you often feel lonely. Your mood can get very low and you are anxious most of the time.

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Appendix C. Demographic Questionnaire

Questions About You

Please answer the following questions:

1. What is your age?

2. What is your gender?

Male [ ]Female [ ]Other [ ]

3. How would you describe your ethnicity?

Asian or Asian British Bangladeshi Indian Pakistani Any other Asian background

Black or Black British African Caribbean Any other Black background

Mixed White & Asian White & Black African White & Black Caribbean Any other mixed background

White British Irish Any other White background

Other Ethnic Group Chinese Any other ethnic group

I do not wish to disclose this

4. What is your occupation?

5. What is your highest level of education?

None [ ]GCSE or equivalent [ ]A level or equivalent [ ]Undergraduate university degree [ ]Postgraduate university degree [ ]

6. Do you or have you ever worked within a specialist mental health service such as a Community Mental Health Team or IAPT?

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Yes [ ]No [ ]Unsure [ ]

Optional: If yes or unsure, please provide details

7. Have you ever had any treatment from a specialist mental health service?


Optional: If yes or unsure, please provide details

8. Optional: Have you ever had any mental health problems?


Optional: If yes or unsure, please give details

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Appendix D. Full list of occupations for depression and psychosis groups

Occupations of depression group

Occupation N TotalMarketing 5 5Sales 4 9Customer Care 4 13Teacher 3 16Musician 2 18Retired 2 20Administration 2 22Unemployed 2 24Accountant 1 25Hairdresser 1 26Consultant 1 27EVS OPerator 1 28IT Director 1 29Lawyer 1 30Librarian 1 31Physiotherapist 1 32Press Officer 1 33Military 1 34Scientist 1 35Warehouseman 1 36

Occupations of psychosis group

Occupation N TotalSales 5 5Retired 3 8Civil Servant 3 11Director 3 14Administration 2 16Developer 2 18Public Relations 2 20Legal Assistant 2 22Unemployed 1 23Tattooist 1 24Scientist 1 25Accountant 1 26Bookkeeper 1 27Customer Support 1 28Human Resources 1 29Interior Designer 1 30Marketing 1 31Personal Assistant 1 32Office Manager 1 33

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Television Producer 1 34Tyre Fitter 1 35Teacher 1 36

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Appendix E. Favourable Ethical Opinion

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Appendix F. Task instructions

Sorting Task

This study is interested in your opinions about recovery. There are no right or wrong answers. I am interested in your personal opinion and views. To help you understand what I mean by recovery, here are two examples:

Below, you will find a description of a condition that some people experience. Please read the description and imagine that you are experiencing the condition described. You can re-read the description as many times as you want whilst completing the task described over the page.

[Vignette inserted]

In the envelope are 47 cards. On each card is written an opinion about recovering from the condition. I would like you to sort the cards into piles. In one pile you should place all the

Recovering from a cold: for most people, a cold means having a blocked or runny nose, a sore or itchy throat, a dry or chesty cough and generally feeling tired and run down. People might think that a cold will get better on its own as time passes and so they won’t do anything in particular to make it pass more quickly. Other people may think that if they take remedies such as paracetamol, Lemsip or cough mixtures the cold will pass more quickly. People might think that recovering from a cold means having none of the symptoms associated with a cold any longer. That is, they will think they have recovered from a cold when they return to how they felt before they caught a cold.

Recovering from a broken leg: having a broken leg involves pain, having to have the bone reset, wearing a plaster cast and not being able to engage in normal activities such as walking unassisted, exercising, or driving. Daily activities such as working, cooking and having a bath or shower are also likely to be difficult without help. In order to recover from a broken leg, people are likely to think that they will need to rest and wear a plaster cast to allow the bone to knit together again. People might think that recovering from a broken leg means that the bone heals completely and they can return to normal activity. However, some people might think that they may not fully recover from a broken leg. For example, the bone may not heal fully and this might mean that the person has less strength in the leg than they had before it was broken. Or, they might continue to feel an ache or pain in the leg, for example when the weather is very cold or when they engage in vigorous exercise.

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cards you agree with. In another pile, you should place all the ones you disagree with. You might also make a third pile of cards that you feel more neutral about (you neither agree nor disagree with them). Remember, there are no right or wrong answers. I am only interested in your opinion.

Please now find the Sorting Grid. I would like you to place the cards on the grid. You will require a flat surface and some space for this. Starting with your ‘agree’ pile, please place the cards into the grid depending on how much you agree with each one. The statements you agree with more strongly should be placed further to the right of the grid. There are only a set number of agreement spaces.

Please now do the same with your ‘disagree’ pile. Please place them into the grid depending on how much you disagree with each one. The statements that you disagree with more strongly should be placed to the left of the grid. Again, there are only a set number of disagreement spaces.

Please now do the same with your ‘neutral’ pile, if you have one. You should find that the only grid spaces left to place your neutral cards are those in the column labelled ‘0’ or the squares to the left or right of ‘0’.

Now please look over the grid and make sure that you are happy with where you have placed all of the cards. Please move the cards around if you are not happy with where you have placed any of them. Continue moving them around until you are happy that you have the cards in the places you think they should be. Then please copy the number printed on each individual card into the space on the grid where you placed that card. Please make sure that all squares in the grid have one card number written in them.

Please now return to the Instruction Sheet.

Thank You

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Appendix G. Participant Information Sheet

November 2014

PARTICIPANT INFORMATION SHEET

Lay perceptions of mental health recovery: A Q-methodological study

Introduction

My name is Fran Palmer and I am a Trainee Clinical Psychologist based in the Psychology Department at the University of Surrey, Guildford. I would like to invite you to help me by taking part in my study. To help you decide if you would like to take part, please read this Information Sheet so that you know what you will be asked to do.

What is the study about?

I am interested in finding out the different views that people have about the process of recovering from mental health problems. Previous research has asked people who have experienced mental health services what they think about the process of recovery. I am interested in the views of people who have not had experience of mental health services

Can I take part in this study?

To take part in this study, you need to:

Be aged 18 or older Never had experience of mental health services (e.g. worked in mental health services or

been a patient receiving treatment in a mental health service including a Community Mental Health Team or IAPT service).

If you have experienced mental health problems, you can take part as long as you did not receive treatment from a mental health specialist, such as a clinical psychologist or psychiatrist or other therapist. For example, you may have experienced mental health problems and been given medication by your GP but not seen a mental health specialist. In this case, you can still take part.

You do not need to know anything about recovery or mental health problems to take part. I am interested only in your opinion and what you think about a number of statements regarding recovery.

Do I have to take part?

No, taking part is entirely up to you. Before deciding to take part, you can ask me for further information and I am happy to answer any questions you may have. My contact details are on this sheet. If you agree to take part, you can still change your mind at any time while completing the study. You do not have to give me a reason for this.

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What will I have to do?

In this pack are some instructions, some statements and a sorting grid. You will be asked to read the instructions and then read about a mental health difficulty. You will then be asked to imagine that you had the difficulties described. You will next be asked to look at some statements and, for each one, decide how much you agree or disagree with each statement. You will also be asked some questions about yourself, such as your age, occupation and whether you have ever experienced mental health problems (a yes/no question which you can refuse to answer if you wish). Finally, you will be asked to post back your responses to me in the pre-paid envelope provided.

The time taken to complete the task is likely to vary for each person completing it but it should not take more than 45 minutes and for some people this may be considerably less.

Does what I say get shared with anyone else?

No one else will see any information that could identify you (such as your name and address). The answers you provide will be anonymised. My two research supervisors (Dr. Laura Simonds and Ms Mary John) will be able to look at your anonymous data but they will not see any information that could identify you personally. No one else will have access to the information you give me.

What happens when the research study is completed?

This piece of research is likely to be completed by September 2015. I may decide to send the completed research to a journal to be published. These journals are usually read by other people who are working in the same field and are not generally read by the public. Your details would not be identifiable in any way from this publication. If you would like to receive a summary of the results of this study, please let me know.

Are there any consequences to taking part in this study?

You may find it upsetting to imagine yourself experiencing mental health problems. If this is likely to be the case, I would advise that you do not take part in the study. If you feel concerned about your own welfare after taking part in this study, please contact your GP or another source of support such as Mind, 0300 123 3393 (www.mind.org.uk) or Rethink, 0300 5000 927 (www.rethink.org)

What are the benefits of taking part in this research?

There may be no direct benefit to you. However, I hope that this study will help mental health professionals and managers to have a greater understanding about how people who have not experienced mental health services understand the concept of recovery.

What if there is a problem?

If you have any concerns about any aspect of the way you have been treated during the course of the research study, then you can contact my principal supervisor, Dr. Laura Simonds. Her contact details are on this form.

Has the research been approved by any committee?

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The research has received a favourable ethical opinion from the Faculty of Arts & Human Sciences Ethics Committee at the University of Surrey.

How do I agree to take part?

To agree to take part, you simply need to complete and return the study materials enclosed within this pack. Before you agree to take part, it is important that you agree with these points:

You have read and understood this Participant Information Sheet. You have been given a full description of the study, what it will entail and how long it might

take. You have been advised about any potential risks of taking part in this study. You have been given the opportunity to ask questions about this study and have received

responses that you understand. You understand that all personal data will be held in the strictest confidence by the main

investigator and in accordance with the Data Protection Act (1988). You agree that you will not seek to restrict the use of the data acquired from this study, on

the understanding that your anonymity is preserved You understand that you are free to withdraw from the study at any point during

participation without providing a reason.

Thank you for taking the time to read this information sheet

Research conducted by Fran Palmer, Trainee Clinical Psychologist, University of Surrey; [email protected]

Principal supervisor: Dr. Laura Simonds, Lecturer, University of Surrey; [email protected] , 01483 686936

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Appendix H. Debrief Sheet

Debrief Sheet

Thank you for taking part in my study. This sheet provides a brief summary of what I am investigating.

Recently, mental health services have had a shift in their philosophy. In the past, they used to be focused on 'clinical recovery' which meant returning to the same level of functioning as experienced before the onset of the illness, following treatment from professionals. Mental health services now aim for 'personal recovery' which is a wider concept that includes the idea that someone can enjoy a good quality of life while still experiencing symptoms. I am interested in knowing what people who have never experienced mental health services think about recovery from mental health problems and whether these views are more in keeping with clinical or personal recovery. As there has not been much research into this previously, I am not expecting a particular set of results and this study is more exploratory in nature.

If you would like to receive a summary of the results of this study, please email me at [email protected] to let me know. A summary will be available in September 2015.

If you feel upset by any aspect of this study, please contact your GP or another source of support such as:

Mind: Tel – 0300 123 3393 (www.mind.org.uk)

Rethink: Tel - 0300 5000 927 (www.rethink.org)

If you have any questions about the study, please contact me at [email protected] or my principal supervisor at [email protected].

Thank you again for your participation

mailto:[email protected]

mailto:[email protected]

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Appendix I. Factor Arrays for depression and psychosis groups

Item No. Statement Dep F1

Dep F2

DepF3

Psy F1

Psy F1

1 I could not recover without hope 3 0 3 0 1

2 Recovery would mean having no more symptoms

-2 -2 0 -4 1

3 I would need help from loved ones to recover 3 3 0 3 14 I would need professional help to recover -3 4 1 5 -35 I would need medication to recover -5 -1 -3 2 -46 If I could achieve my goals I would have

recovered-2 -3 3 -3 -2

7 If I had a good quality of life I would have recovered

0 -4 4 -2 -3

8 If I were able to work/study I would have recovered

-2 -3 -1 -2 -2

9 If I had good relationships with others I would have recovered

-2 -4 -1 -3 -2

10 Recovery could not happen without treatment -3 1 2 4 -311 Doing things which make me feel better

would help me recover4 2 0 1 3

12 Developing a new idea about who I am would help me recover

-1 -2 -2 -2 0

13 Accepting that I have become ill would help me recover

2 4 3 3 3

14 Talking about my problems would help me recover

1 2 4 2 0

15 Recovery would just happen over time - I wouldn't need to do anything

-5 -5 -5 -5 -4

16 Professionals would make me recover - I wouldn't need to do anything

-4 -4 -5 -5 -4

17 Recovery would mean accepting there are things I can no longer do

-1 -2 -2 -2 -3

18 Recovery would mean rebuilding my life -1 -2 -4 -1 119 Recovery would mean developing new skills 0 -2 -3 -1 020 Recovery would mean increasing my

independence-1 -1 1 -2 -1

21 Spirituality would be important in my recovery

-3 -3 -3 -3 -2

22 Meeting people who have had the same experiences as me would help me recover

2 0 -4 0 0

23 Recovery would mean increasing my self-confidence

4 1 -2 0 2

24 I would need to try new ways of coping in order to recover

0 1 0 1 1

25 Recovery would mean taking up new challenges

0 -1 -1 -1 0

26 I would have to take control of my life in -1 0 5 1 4

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order to recover27 I would need to take an active role in my

recovery5 3 4 5 5

28 Keeping my friendships would help me recover

1 0 1 1 2

29 Recovery would mean having fewer symptoms

1 0 0 0 -1

30 Recovery would mean returning to normal -2 -1 2 -3 531 Learning about my difficulties would help

me recover1 1 2 2 2

32 Recovery means feeling confident at managing symptoms

0 4 -1 2 -1

33 Recovery means having better self-esteem 2 1 -2 -1 334 Recovery means finding meaning in life

despite having symptoms 3 -1 2 -1 -1

35 Recovery means being able to make my own life choices

0 0 1 0 4

36 Recovery requires resilience -1 2 3 0 037 Recovery would be a gradual process 4 5 2 4 238 I would need to be motivated in order to

recover3 2 4 2 2

39 Recovery would be possible even if the condition was not cured

0 5 0 3 -1

40 Recovery would require working with professionals

-3 3 -1 4 -1

41 Recovery would mean taking responsibility for my life

1 -1 -1 1 3

42 It would not be possible for me to recover from these symptoms

-4 -5 -4 -4 -5

43 Recovery means feeling stronger when faced with difficulties

5 3 0 0 1

44 Recovery would not be straightforward - there would be setbacks

2 2 1 3 4

45 I could have some symptoms and still be recovered

1 1 1 1 -2

46 I could not recover if I weren't optimistic 2 0 -2 -1 047 I would need to become a different person in

order to recover -4 -3 -3 -4 -5

MRP Proposal

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Background and Theoretical Rationale

The meanings attributed to the word 'recovery' depend in part on the realm of health

in which the word is being used. For example, in physical health, the term recovery is likely

to refer to the ending of symptoms and a return to previous functioning. However, even in

this realm of physical health, recovery is not always a clear-cut concept because some people

may experience the resolution of their previous symptoms following treatment, but may be

left with long-term issues with mobility that mean they can no longer function to the same

level as they could before the onset of their illness (Orbell, Johnston, Rowley, Espley &

Davey, 1998). As such, there is now a widely accepted view within physical health models

that recovery is not simply the elimination of symptoms and that a wider definition is

required (Harrison, 1984; Wright, 1983).

Within models of mental health recovery, there is also now a view that recovery is too

broad a concept to simply refer to the elimination of symptoms. Slade (2009) describes the

distinction between clinical recovery and personal recovery. The term clinical recovery is

used to describe the idea that symptoms of mental illness could be eliminated by mental

health professionals and people could return to the same level of functioning as they

experienced before the onset of the mental illness. Personal recovery is described as "... a

deeply personal, unique process of changing one's attitudes, values, feelings, goals, skills,

and/or roles. It is a way of living a satisfying, hopeful and contributing life even with

limitations caused by illness. Recovery involves the development of new meaning and

purpose in one's life as one grows beyond the catastrophic effects of mental illness"

(Anthony, 1993, p. 15). The use of the word recovery has changed over time. This is due in

part to the recovery movement which emerged during the 1980s. It was a movement to

oppose the previously largely accepted view that serious mental illness equated to lifelong

disability for which there was no cure (Baxter & Diehl, 2006) and was based on the

65

experiences of many service-users who had been able to enjoy a full life despite being given a

diagnosis with no hope attached (Andreson, Oades & Caputi, 2003). At this time, it appeared

that despite deinstitutionalisation in the 1970s which provided more community based

treatments, clinical recovery was still the primary aim of mental health services and this has

continued until recent years (Slade, 2009). Personal recovery is now a prominent idea

underlying the design of mental health services both within the UK and internationally (John,

Jeffries, Acuna-Rivera, Warren & Simonds, 2014).

As this shift in service orientation is a relatively recent one, it is important to note

how those using these services currently view recovery from mental illness. A recent

literature review (Palmer, 2014) examined the main models of recovery to identify how

service-users conceptualise recovery. The models included in this literature review suggested

that the phases of recovery tend to follow a general pattern of feeling overwhelmed by the

illness and the situation, followed by the ignition of hope and the realisation that a better life

is possible. People then begin to try to make changes in their lives although they may

experience many setbacks. If they manage to persevere despite these, they will manage to

move forward with their lives, regain some of their old abilities and/or develop new

experiences and roles for themselves. These changes are likely to lead to an improved quality

of life overall and, although symptoms may still be present, the person is now more confident

at managing them and is better able to deal with setbacks. Theoretically, by this stage, the

person should be able to live a satisfying life where the illness has a minimal impact because

the person is better equipped to manage any impact it does make. The models also proposed

that as the person moves through the stages of recovery, certain processes are required to

occur. The most prevalent of these are finding hope, taking responsibility and developing a

new stable identity. The findings from this literature review seem to indicate that people with

experience of mental health services describe recovery in similar terms to those used above to

66

describe personal recovery rather than clinical recovery. As such, their conceptualizations of

recovery fit with those of the recovery-oriented services. It could be argued that this is

because they have been socialized into the mental health system and have taken on board the

current philosophy of the system.

Previous research into recovery from mental illness, including the models within the

literature review (Palmer, 2014) has focussed on the views of those who have experienced

mental health services. However, there are a large number of people who have not yet had

contact with mental health services but may require this contact in the future. These people

will not have been socialized into the system and may be unaware of the recent shift in

philosophy. They may therefore expect treatment in line with achieving clinical rather than

personal recovery. It is important to investigate the views of people who have not been

socialized into the system because this will indicate likely barriers in implementing recovery

focussed practice. These views may also allow the meaning of recovery from the lay

perspective to be more fully understood. This study therefore aims to identify how the lay

person who has not had contact with specialist mental health services or worked within

mental health services defines recovery and what they believe the important aspects of

recovery to be.

Research Question

How do people with no experience of mental health services conceptualise recovery from

mental health problems?

Method

Participants

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The participants in this study will be anyone over the age of 18 who has never worked

in mental health services and has not had personal experience of specialist mental health

services. Participants can be included if they have experienced mental health problems as

long as they did not receive treatment from a trained mental health professional. For example,

people who have been prescribed medication by their GP may participate but if they received

therapy or had a more intensive intervention from a mental health professional, they are not

eligible to take part.

Design

The study will use Q-methodology (Stephenson, 1953). This is because lay person

perceptions of recovery from mental health problems have not been investigated before. Q-

methodology is an exploratory technique which allows participants to decide what is

meaningful to them about recovery without imposing idea or meanings on them (Watts &

Stenner, 2005). It is therefore an appropriate method to enable investigation into a new area.

Materials

The materials to be included in this study are demographic questions (see Appendix

A), the vignettes (see Appendix B), the Q-set and the instructions for the Q-sorting (see

Appendix C).

The participants in this study will be required to provide demographic information

including their age, gender, occupation and whether or not they have had contact with

specialist mental health services.

The study includes two vignettes, one of which depicts depression and the other a

psychosis. Half of the participants will be randomly assigned to read each one. Both vignettes

are designed to be realistic and accessible to a wide range of readers. The vignettes are based

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upon descriptions of depression and psychosis from the website www.mind.com. It was very

important for the study that the vignettes were easy for a wide variety of people to engage

with and it was therefore thought that a style similar to that found on websites for people

without specialist mental health knowledge would be appropriate. As such, the vignettes are

thought to be culturally relevant and therefore a valid stimulus. Finally, the literacy level

required to read the vignettes are appropriate for those who have experienced 8.6 and 8.7

years of education respectively, equating to the expected reading ability level of a 12-13 year

old. The two vignettes have been read by seven mental health experts and all have agreed that

the first depicts a depression and the second a psychosis. This demonstrates that they have

excellent inter-rater reliability. The vignettes are both based on young men of the same age

with the same name. This is to prevent participants from inferring gender differently and

hence gender being a factor that influences sorting differences between individuals within

conditions. The age 23 was chosen because it may be easier for respondents to engage with

the idea of recovery in a younger person than in someone who was much older. In terms of

the gender, there was no theoretical rationale for differences in recovery in men or women

and therefore the gender of the person in the vignette was not deemed important as long as it

was constant across the two vignettes.

The study is based upon a Q-Sort of 47 statements (known as the Q-sample) related to

recovery. These statements were derived from the Q-concourse which was a literature review

of how current models of mental health recovery conceptualise recovery (Palmer, 2014).

Themes were extracted from these models until saturation was reached. As expected,

saturation was reached before all models were analysed due to the high degree of overlap

between recovery models. These themes were then re-framed into ideas for statements. These

statements then underwent a process of development and re-design until it was felt that they

69

were all relevant to the concept of recovery and they covered all of the key aspects mentioned

in the models without repetition.

Procedure

Participants will be recruited to the study in a number of different ways. Word of

mouth will be one method of recruitment. Social media will be used by advertising the study

on Facebook and Twitter and the study will also be advertised on relevant websites, such as

research websites, following approval from the website administrators. A snowballing

recruitment strategy will be used and I will ask others to share the details of my study both

via social media and word of mouth. I will also advertise the study at the University of Surrey

using posters. On the written sources, the details will include a brief description of the study

and my email address to gain access to the study materials. For those recruited via word of

mouth, I will describe the study and ask whether the person may be interested in participating

or know anyone else who may like to participate.

The study materials will either be posted to participants or given to them in person by

myself or someone who has identified that they know someone else who wishes to take part.

Participants will be asked to read a consent form before deciding whether or not to

take part in this study. If they agree to participate, they will then be asked to read one of the

vignettes. Keeping the vignette in mind and imagining they were experiencing similar

difficulties, participants will be asked to sort a set of 47 recovery statements into a quasi-

normal distribution depending on how much they agree or disagree with each one. An 11-

point scale will be used for the forced distribution, with rankings from -5 (strongly disagree)

to +5 (strongly agree). See figure 1 for a diagram of the sorting grid. Following this sorting,

participants will be given a debrief sheet. They will be given the option to receive the results

of the study via e-mail if they wish to.

70

Figure 1. Q sort grid.

Ethical considerations

While it is not thought that the study is likely to raise significant issues for those

taking part, some participants may experience mild distress when being ask to imagine

experiencing the difficulties described in the vignettes. This possibility will be made explicit

in the information sheet and participants will be allowed to withdraw at any time during the

course of the study. The debrief sheet will also include details of who participants should

contact if they do find that the study has raised issues for them and they feel in need of

support.

Name of Ethics Committee: University Ethics.

R&D Considerations

This study will not require NHS R&D approval.

Proposed Data Analysis

71

PQ Method will be used to analyse the results. Firstly, the Q-sorts will be

intercorrelated. This will demonstrate the relationship between all of the Q-sorts. The Q-sorts

will then be factor analysed which will produce a number of factors that the different Q-sorts

can load on to. Factors are clusters of similar sorts and the factor onto which a particular Q-

sort loads is dependent on the pattern of their Q-sort, such that two similar Q-sorts will load

onto the same factor. As such, each different factor provides a different Q-sort pattern that is

representative of the participants loading onto it.

The factors will then be interpreted. The outcome of this interpretation will be a

summary of the characteristics of each factor. 'Factor examplars' will be uncovered which are

the sorts which most define the factor.

Service User and Carer Consultation / Involvement

The study will be piloted by a potential participant. They will be asked for feedback

regarding the readability of the study materials, their understanding of the sorting process and

their general ideas about the study. Changes will be made accordingly and the study will then

be tested again by another potential participant.

Dissemination strategy

The completed paper may be submitted to a relevant peer-reviewed journal.

Feasibility Issues

This study will require 40-60 participants, although could still be effective with far

fewer (Watts & Stenner, 2005). The timescale for this project is limited, so it may be difficult

to achieve the optimum number of participants. It is hoped that using social media to

advertise the study will maximise the number of participants rather than completing the study

in person. Also, by emailing the details of the study to personal contacts and asking them to

72

share it with their contacts, it is hoped that details of the study should reach a wider audience

of potential participants.

Study Timeline

October 2014: Complete proposal

End of October 2014: Submit ethical application.

November 2014: Design study online

End of November 2014: Receive ethical approval

December 2014 -January 2015: Collect data and write introduction and method sections

February 2015: Analyse and write up results and discussion section

End of February 2015: Full draft to supervisor

March 2015: Submit MRP portfolio by 30.03.15

73

References

Andreson, R.,Oades, L. & Caputi, P. (2003). The experience of recovery from schizophrenia:



Antony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health

service system in the 1990s. Psychosocial Rehabilitation Journal, 16, 11-23.

Baxter, E. A. & Diehl, S. (1998). Emotional stages: consumers and family members

recovering from the trauma of mental illness. Psychiatric Rehabilitation Journal, 21,

349-255

Harrison, V. (1984). A biologist’s view of pain, suffering and marginal life. In F. Dougherty

(Ed.), The depraved, the disabled and the fullness of life. Delaware: Michael Glazier.



specialist mental health services. Clinical Psychology and Psychotherapy. doi:

10.1002/cpp.1905

Orbell, S., Johnston, M., Rowley, D., Espley, A. & Davey, P. (1998). Cognitive

representations of illness and functional and affective adjustment following surgery

for osteoarthritis. Social Science & Medicine, 47, 93–102.

Slade, M. (2009). 100 ways to support recovery: A guide for mental health professionals.

Rethink recovery series: volume 1. Retrieved from:

http://www.rethink.org/100ways

Stephenson, W. (1953). The study of behaviour: Q technique and its methodology. Chicago,

IL; University of Chicago Press.

Watts, S. & Stenner, P. (2005). Q The subjective experience of partnership love: a Q

methodological study. British Journal of Social Psychology, 44.

74

Wright, B. (1983). Physical disability—A psychosocial approach. New York: Harper & Row.

75

MRP Literature Review

A review of models of mental health recovery

Introduction

Recovery is a word with many different meanings (Ward, 2014). Slade (2009) draws

a distinction between clinical recovery and personal recovery. Clinical recovery is the idea

that symptoms can be eliminated by mental health professionals and the person can function

just as they did before the onset of their mental illness. Personal recovery means something

different to clinical recovery and the most often used definition is "... a deeply personal,

unique process of changing one's attitudes, values, feelings, goals, skills, and/or roles. It is a

way of living a satisfying, hopeful and contributing life even with limitations caused by

illness. Recovery involves the development of new meaning and purpose in one's life as one

grows beyond the catastrophic effects of mental illness" (Anthony, 1993, p. 15). Personal

recovery is also known as 'social recovery' (Simonds, Pons, Stone, Warren & John, 2013).

Henceforth in this paper, recovery refers to the concept of personal or social recovery rather

than clinical recovery.

The recovery movement emerged during the 1980s and was based upon the

experiences and observations of service-users, their family members and mental health

professionals (Sklar, Groessl, O'Connell, Davision & Aarons, 2013). It was a movement to

oppose the previously largely accepted view that serious mental illness equated to lifelong

disability for which there was no cure (Baxter & Diehl, 2006) and was based on the

experiences of many service-users who had been able to enjoy a full life despite being given a

diagnosis with no hope attached (Andreson, Oades & Caputi, 2003). The recovery movement

was precipitated by deinstitutionalization during the 1970s when it was accepted that the

ideology of institutions and the treatments they offered were not meeting the needs of their

76

patients (Young & Ensing, 1999). This led to more community-based treatments which were

still considered by some to focus on symptom alleviation at the expense of considering the

person's social, educational and residential needs (Anthony, 1993). It appeared at this time

that clinical recovery was still the main aim of mental health services even though they were

now based in the community. Slade (2009) also posits that many mental health services in the

past have been designed to meet the goals of clinical recovery. This has started to change in

recent years and recovery is now a prominent idea underlying the design of services both

within the UK and internationally (John, Jeffries, Acuna-Rivera, Warren & Simonds, 2014).

In order to fully implement recovery-focussed services, a shift in philosophy from

treating illness to promoting well-being is necessary. A key issue arising from this shift to

recovery-oriented mental health services is that people who have not had contact with these

services may have expectations of the services based on clinical rather than personal

recovery. It is therefore of interest how people who have not had contact with services before

define recovery. In order to research this, it is necessary to first know what recovery means to

those who have experienced mental health problems and services. This literature review

therefore seeks to examine what recovery currently means by completing a review of the

prominent models of recovery.

Method

This literature review aimed to identify and review the main models of recovery.

Recovery models were identified by first reading three main review papers on mental health

recovery research (Tew et al., 2012; Leamy, Bird, Le Boutillier, Williams & Slade, 2011;

Andreson, Oades & Caputi, 2003). Recovery models included in these reviews were

identified and recorded. The reference lists from these three review papers were also hand

searched to ensure that all recovery models mentioned in the papers were included. This led

77

to the identification of 10 models of recovery, and in addition, two of the review papers

(Anderson et al.; Leamy et al., 2011) were also included as they had developed overall

models of recovery based on the individual models they had reviewed. This process yielded a

total of 12 models of recovery.

Inclusion and exclusion criteria were then applied. Models were included if they had

informed policy, led to the development of a measure of recovery or were based upon

service-user accounts. Models were excluded if they were not available in English or if the

model was not deemed detailed enough to review fully. This process led to the omission of

four models of recovery and eight remained to be included in this review. Of the eight

recovery models, two were developed from literature reviews, and six were primary data

models based on adults (N = 5) and young people (N = 1).

Results

This section seeks to describe the eight main models of recovery identified from the

literature review. Table 1 provides a summary of all models included. Similarities and

differences between the models are identified with particular attention paid to the structure of

the models and the themes contained within them. The eight models have been grouped into

three sections for description and discussion. The first section describes the primary data

model developed for young people (N=1). The second section describes the primary data

models developed for adults (N = 5). The final section describes the recovery models

developed from literature reviews (N = 2). Initially each group of models is compared and

discussed, followed by a comparison of the findings across the three groupings.

Group 1 – recovery models derived from primary research with young people

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The only recovery model within this literature review that was developed for young

people rather than adults was by Simonds et al., (2013). This paper makes a useful addition to

the literature because it is the first study to look at the concept of recovery in adolescents

using a data-driven methodology. This model was developed from thematic analysis of semi-

structured interviews with mothers and their adolescent children who were aged 14-16 and

had diagnoses of depression or anxiety. They were recruited from a specialist mental health

service within the UK. The term 'recovery' was not used initially during the interviews and

participants were told instead that the interview was about their experiences of anxiety or

depression. They were asked about the time when they first experienced problems, when they

first attended the specialist service and how they were at the current time. They were also

asked about what had changed for them, how these changes had occurred and how they

pictured their future. Mothers were asked similar questions to their children. Thematic

analysis was used to analyse the interviews of adolescents and mothers separately and these

were then integrated.

Three themes were developed from the data. The first of these was a loss of self

through a disruption in how participants related to others and how they related to themselves.

They experienced a change in how they related to themselves because they were experiencing

feelings, thoughts and behaviours which they did not understand and found very frightening

and this impacted negatively upon their confidence. These experiences were accompanied by

spending less time with others socially due also to fears of negative judgement and restricting

activities due to the problems they were experiencing. These changes further emphasized the

adolescents' loss of place and amplified the contrast perceived by the adolescent between

themselves and their peers. An idea expressed by some was that other people of their age did

not experience what they were experiencing and therefore would be unable to understand and

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empathise. Adolescents frequently expressed a desire to hurt themselves or end their lives in

the context of these problems and changes.

The second theme identified was renegotiating the self. The data suggested that

adolescents work to renegotiate their self-concept rather than returning to their prior self. For

some adolescents, talking to family or professionals about their problems was an essential

catalyst to working through their difficulties, while others remained reluctant to open up.

Some adolescents reported re-engaging socially and discovered their personal resilience

which led to renewed confidence. They were also able to identify that other people also

experienced difficulties and they were not so different from their peers. Contradiction and

uncertainty were also evident within this theme from both mothers and young people

regarding their progress and understanding of their problems.

The third theme was anticipation of future self. Participants were able to identify

goals and aspirations but commonly hoped to become symptom free. All mothers wished for

their child's anxiety or depression to be eliminated but most believed that these difficulties

would be present in their child's future. In this case, they hoped that their child would be able

to live an independent life, be happy and be able to manage their difficulties. Some young

people believed that their symptoms would disappear as a natural part of maturation.

However, some young people were unsure about symptom eradication, expressing concerns

about being the same as other people without their problems.

Overall, this model described adolescent recovery as a process of loss and

rediscovery. While this model makes a very useful contribution to the literature, particularly

because of its focus on adolescent recovery, it does not provide as much detail as some other

models on the actual process and structure of recovery. That is, the authors point towards

themes within recovery but do not state that one follows another or provide details on the

80

stages of recovery. Also, the model is limited because it is based upon a single study with a

limited sample size with potential selection bias and it only includes the views of mothers

rather than other caregivers.

Group 2 - recovery models derived from primary research with adults

The second group of recovery models were data-driven models of adult recovery. The

earliest of these (Deegan, 1988) differs slightly from the rest in terms of methodology. This

paper was a seminal work by a clinical psychologist who was also a service-user who had

been diagnosed with schizophrenia and was able to describe firsthand the process of recovery

through her own experience and also that of a physically disabled male. She described the

process of recovery as beginning with hopelessness at being given the devastating label of

"sick" or "disabled" by professionals. Denial and rage also followed diagnosis and she

described feeling that her 'old self' was awaiting her. This denial deepened over the first few

weeks as time went on and she did not return to her former self. In fact, she felt that she was

moving further away from her former self and from her peers. Following denial, Deegan

described despair and anguish, where all tasks seemed overwhelming and so they gave up

attempting any and remained inert. With hindsight, she describes the reason for this as a

complete lack of hope. Deegan described feeling during this terrible period "truly disabled,

not by a disease or injury, but by despair" (p. 13) and, she proposed, for some people this

period could last for moments or days, while for others it may never end. This despair

eventually gave way to hope and courage, gleaned largely from the support of loved ones.

This hope needed to be followed by willingness to act and Deegan began completing small

tasks and taking back responsibility for her life. Deegan described this stage as rebuilding her

life based upon the three aspects of recovery: hope, willingness and responsible action.

Recovery is a process involving multiple setbacks and for Deegan, required acceptance of her

limitations.

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Overall then, Deegan (1988) describes recovery as a process involving four stages:

Denial, despair and anguish, hope, and willingness to act. This model differs from Simonds et

al. (2013) in that it describes the stages of recovery with the idea that the person moves from

one to the next, although with potential setbacks. However, it also contains many similar

themes including social withdrawal, hope, support from others and rebuilding lives and skills.

Deegan's description of denial and feeling distanced from her peers is also similar to Simonds

et al.'s (2013) theme of loss of self where young people felt very different from their peers

and their previous selves. Deegan's model is an exceptionally valuable addition to the

literature because it is an account of recovery purely from the point of view of the person

who experienced it, although it does have the methodological drawbacks of being based on

just two cases. It is not possible to know whether other people may experience recovery in

the same way as the two people included in this study and the fact that Deegan became a

trained Clinical Psychologist may again have influenced how she viewed her recovery in

hindsight given her level of mental health knowledge.

The second model within this section was by Davidson & Strauss (1992). They

conducted repeated semi-structured interviews with 66 people who had been hospitalized and

had diagnoses of schizophrenia, schizoaffective disorder or major affective disorder. These

interviews were conducted when they were first in hospital, upon discharge, bimonthly for

the year following discharge and annually after that for a period of two-three years. They

found that their participants experienced recovery as a process of rediscovering,

reconstructing and making use of a functional sense of self. Davidson and Strauss posit that

there are four basic aspects to this process which do not occur in a linear fashion but are

instead related and can overlap.

The first of these aspects includes the realisation that it is possible to have an active

sense of self while experiencing psychological distress. This can involve the rediscovery of

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parts of the self which have not been affected by the illness, or discovering previously

unknown parts of the self which offer areas of competence yet to be discovered. It can also

involve the acceptance that the illness is separate from the person, thereby allowing the

person to develop a new sense of self which is not identified with the illness. For all people

who described this aspect, the realisation that some aspects of the self which hold promise for

a sense of self not related to the illness are still available is very important. The second aspect

of this process of rediscovery and reconstructing a sense of self is labelled 'taking stock of

self'. This is usually related to a specific goal and involves the person assessing their

strengths and limitations to see whether they may be able to achieve the goal before they take

steps towards it. If the person feels that they currently do not have the required skills to

achieve a goal, they may alter that goal or set about acquiring the skills they need to achieve

it. The third aspect is labelled 'putting the self into action'. The person may try to achieve

their goals and will then reflect on their progress with these. A positive outcome is likely to

enhance the new sense of self while a negative one many undermine the tentative sense of

self. It is also important here for the person to realise that they can take steps on their own

behalf to achieve their goals which can help prove to themselves that they are capable of self-

directed action. The final aspect is labelled 'appealing to the self'. As a more functional sense

of self develops, it can be used by the person as a refuge from the illness and related feelings

such as stress and stigma. As such, it can be used to help the person cope with their illness.

Overall, this model describes the centrality of sense of self to recovery. It describes

the development of this sense of self as involving four different aspects which the person

does not move through in a linear fashion. While this model focusses on sense of self, it does

also include factors which have been observed in other models reviewed, such as self-

efficacy and hope that goals can be achieved. Sense of self is also a part of recovery which is

discussed by Deegan (1988) and therefore appears to be of central importance to recovery.

83

Davidson and Strauss's (1992) model is based on a relatively large number of participants

who were followed for several years after discharge from hospital. A potential criticism of

the model is its heavy focus on sense of self which possibly comes at the expense of

emphasising the importance of some other aspects of recovery such as social interaction.

Davidson and Strauss do mention social interaction but it appears more as a by-product of a

more established sense of self rather than an important aspect of recovery in its own right.

Another key criticism is the focus of the research only on people who have experienced

mental illness severe enough to require a period of time in hospital and therefore these

findings many not generalise to other less severe cohorts.

The next data-driven adult model of recovery was developed by Young and Ensing

(1999). They conducted semi-structured interviews and focus groups with 18 people

diagnosed with a severe mental illness who lived in the community. Grounded theory

analysis was used to analyze the data. In Young and Ensing's model, the initial phase of

recovery is labelled as 'overcoming stuckness' and includes several change processes. The

first of these change processes is acknowledging and accepting the illness. Participants

believed that recovery began with the acceptance that they have become ill and that they

require help. This is a very difficult step because of the associated loss of independence and

control. The second change process within the 'overcoming stuckness' phase is having the

motivation to change. This can also be very difficult as the person needs to overcome

hopelessness in order to resume everyday life tasks such as taking care of themselves. The

final change process within this phase is finding a source of hope. For many people this may

be spirituality and several participants within this study spoke passionately about the strength

and hope they received from their faith. For other people, hope and inspiration came from

other people, particularly peer role models. Young and Ensing posit that these change

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processes are important throughout recovery but are particularly essential during the initial

phase.

For Young and Ensing (1999) participants moved into the middle phase of recovery

once the first phase was completed. In this phase, labelled 'regaining what was lost and

moving forward', it is important for individuals to feel empowered. This occurs in part

through taking control and responsibility for their own lives which often improves self-

confidence and therefore willingness to take on extra challenges. An important part of taking

responsibility regarded treatment. Participants developed control over their illness by taking

responsibility for their own treatment rather than allowing professionals and carers to take the

lead. Another key part of the middle phase of recovery is about learning and self-redefinition.

Following a serious illness, people appear to assess which parts of themselves remain and

gradually re-discover aspects of themselves that they had thought were lost. It is also

important for people to develop an understanding of the relationship between themselves and

the illness. Participants reported progressing more rapidly with recovery when they had a

good understanding of their illness and demonstrated a sense of self which incorporated the

illness as one aspect. Another important part of the middle stage of recovery in this model

was returning to basic functioning which included self-care, being active and engaging

socially with others. This was a particularly important part of recovery for Young and

Ensing's (1999) participants.

The later phases of recovery focussed on achieving a better quality of life. Some

participants described this as feeling consistently more positively about themselves and they

experienced a peacefulness they had not known before. Importantly, participants within this

stage had realized that it was possible to function 'normally' within the world even with a

diagnosis of a mental illness. Another way of achieving a better quality of life was 'striving to

reach new potentials of higher functioning'. Some participants reported taking on a new

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challenge or becoming more involved with an existing activity. Helping others and becoming

a role model was a particularly rewarding experience for some participants because they felt

needed. A final key aspect of this stage of recovery was a decrease in the number of

symptoms or their intensity. Many participants had acknowledged that they were likely to

have some symptoms in the future but they had identified the best ways to manage these.

Overall then, this model posits that recovery is a process of 'overcoming stuckness',

self-empowerment, self-redefinition and learning, returning to basic functioning and

improving quality of life. These are the five phases of the model and each contained change

processes within them. This is a very detailed model which has many similarities with those

discussed above, including hope, empowerment, self-redefinition and responsibility. A key

difference is the starting point for recovery. Young and Ensing (1999) posit that recovery

begins when the diagnosis is accepted. Davidon and Strauss (1992) begin their description of

recovery even later than Young and Ensing, with the hope that they may still have an active

sense of self in the midst of mental illness. Deegan (1988) begins her model by describing the

initial stage of recovery as being given a diagnosis and experiencing the ensuing distress. It

seems that she considers this part of the recovery process an important one, whereas Young

and Ensing believe the process of recovery actually begins later. A key issue with Young and

Ensing’s model is that their participants are described as having a severe mental disorder, but

their diagnoses were self-reported. These diagnoses include a range from anxiety to Post

Traumatic Stress Disorder. While any of these could be severe, it does not seem that the

severity was objectively assessed by the authors. If all participants were indeed suffering

from a severe mental disorder, it still means that the results of their analysis cannot be

generalised to those experiencing less severe mental health problems.

The next data-driven model of adult recovery was by Spaniol, Wewiorski, Gagne and

Anthony (2002). They followed 12 individuals with diagnoses of schizophrenia or

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schizoaffective disorder for four years and conducted semi-structured interviews with them

every four to eight months. Spaniol et al. described recovery as involving phases, indicators,

dimensions and barriers. The first phase of recovery in their model was being overwhelmed

by the disability. This phase began at the time of onset and could last for many years. The

person feels disconnected from themselves and others and powerless over their lives. Their

confidence is eroded and they feel unable to work towards coherent goals. The second phase

is struggling with the disability. Here, the person begins to accept and understand what has

happened to them and realises that they must develop ways to cope with it. However, fear of

failure is very prevalent here and the person may be cautious of losing what stability they

have already achieved. Spaniol's third stage of recovery is living with the disability. At this

stage the person feels confident at managing their difficulties. They feel more in control of

their lives and have a more developed sense of self. They have meaningful roles, have found

their niche and lead a satisfying life, although they can still feel limited by the disability.

Spaniol's model also posits a fourth phase, living beyond the disability. This phase was

conceptualised from descriptions of recovery in self-help literature (e.g. Blanch et al., 1993).

In this phase, the disability no longer interferes with the person's life, they are well connected

to others and experience purpose in their lives. When comparing Spaniol et al.'s phases with

those reviewed so far, the first phase is comparable to the first two stages of Deegan's (1988)

model. Spaniol et al.'s second phase is comparable to Deegan's final stage of willingness to

act and Davidson and Strauss's (1992) third aspect of putting the self into action. By their

third phase, Spaniol et al. have moved beyond the final stages of Deegan's model but the

stage is comparable to Davidson and Strauss' final stage of appealing to the self. The final

phase of Spaniol et al.'s model was present only in Young and Ensing’s (1999). Deegan gave

an account of her own recovery and did not describe this phase, however this does not mean

that other people cannot reach this stage of their recovery.

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Spaniol et al. (2002) also describe three tasks of recovery. The first of these is for the

individual to develop their own understanding of their disability. Participants understood their

disabilities in a number of ways including spiritually and biologically. The second task is to

gain some control over the disability, through medical or other coping strategies such as

effective support networks. The third task is to enter into meaningful roles which are valued

by society, such as that of 'worker'. In general, the more of these tasks a person has

completed, the further through the phases of recovery they are likely to be. However, Spaniol

et al. do not posit that one moves through the tasks in order. Spaniol et al. also describe

challenges and supports to recovery. The challenges identified were substance abuse, poverty

and disadvantage, race and age of onset. Supports for recovery were supportive people,

effective medication and some form of faith.

Spaniol et al.'s (2002) model is the first reviewed so far which has separated phases,

tasks, challenges and supports of recovery into sections. It is also the most detailed model

reviewed so far. It presents quite a positive view of recovery and follows the journey of

recovery right up until the point of the disability having little impact upon the lives of the

people involved. However, the utility of including a phase which was not described by any

participants seems questionable, especially given that this phase was not echoed in the other

models reviewed to this point.

The next data-driven adult model of recovery was developed by Resnick, Fontana,

Lehman and Rosenheck (2005). This model used quantitative data collected from a previous

larger study of 1076 participants who experienced schizophrenia and used principle

components and confirmatory factor analyses to identify key concepts within recovery.

Measures included in this study assessed quality of life, mastery of mental health treatment,

perceptions of mental health, knowledge and background demographic variables.

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Resnick et al. identified four areas of recovery. The first of these was empowerment

which explained the greatest amount of variance in the model. It involved feeling able to take

responsibility for decisions and treatment and experiencing support from service providers to

achieve self-identified goals. This promotes self-esteem and can help service-users to pursue

other goals such as finding employment. The second area of recovery was hope and optimism

which were important in several ways. Service-users needed hope for the future, to be

surrounded by hopeful and supportive peers, family members and service providers, and have

hope for achieving their goals. Hope is an aspect of recovery which has appeared in every

model reviewed so far and is clearly central to the process. The third area was service-user's

perception of knowledge about their illness, treatment and services available to them. The

final area of recovery identified in this model was life satisfaction. This centred on

relationships with others and safe and affordable housing.

Overall, Resnick et al. (2005) propose that the four domains discussed here are central

to recovery and propose that these could be used to develop a preliminary instrument to

measure recovery based on these. This model perhaps has less utility than those discussed

above as it does not provide such rich data, due largely to the quantitative rather than

qualitative methodology. The authors do note that the larger study from which their data was

taken was not designed to focus on recovery and they were therefore limited on the concepts

they could include. While this seems to be a significant methodological issue, interestingly

the factors found from this study are similar to other models, including empowerment, hope,

self-esteem and support.

An overall comparison of data-driven adult models of recovery reveals that there are

many similarities in terms of structure and content. Three of the models (Young & Ensing,

1999; Spaniol et al., 2002; Deegan, 1988) posit phases to recovery through which individuals

move, although all acknowledge that many setbacks can occur and people could even move

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back a stage. They also all indicate tasks of recovery that need to be completed at each stage,

although they label these tasks differently; sometimes as tasks, sometimes as change

processes and sometimes they are not explicitly labelled at all. The fourth model (Resnick et

al., 2005) suggests domains of recovery orientation, which appear more like tasks of recovery

to be achieved than processes to move through in any order.

In terms of the actual content of recovery, there is striking agreement between all five

models reviewed within this section. To summarize briefly, a disconnection from others and a

lack of confidence characterise the early stages of recovery. Changes in how people view

themselves are also prevalent in all models and it seems that adapting to a new sense of self is

important. All models also identified hope, empowerment and taking responsibility for

recovery as central aspects of recovery. In later stages of recovery, models identify that it is

important for people to resume their previous activities, both social and general life skills,

which lead to increased self-confidence. It is also important for people to enter into roles

which they find rewarding. A key difference between the papers reviewed is that Young and

Ensing (1999) are the only authors to include symptomatic reduction as an indicator of

recovery. It seems intuitive that recovery should be inversely correlated with symptoms and

this is supported by the literature (Corrigan, Giffort, Rashid, Leary & Okeke, 1999;

Markowitz, 2001; Neil et al., 2009; Resnick, Rosenheck, & Lehman, 2004) and it is therefore

surprising that it is not mentioned by more of the models. It is possible that including a

reduction in symptoms as an indicator of recovery is moving too close to the notion of

clinical rather than personal recovery.

In terms of weaknesses of these models, they are all based on severe mental illness

which means that the results are less generalizable to those experiencing more mild mental

health problems. Also, people who may volunteer to take part in these research studies may

have very different opinions and needs to those who may be less vocal and therefore not

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volunteer. Therefore, it is possible that the models are very similar because they rely on the

same types of people to take part in the studies, rather than there being an underlying

uniformity about recovery. However, the models all make intuitive sense as they broadly

define recovery as an experience of overwhelming loss followed by renegotiation.

Group 3 – recovery models derived from literature reviews

The final group of models is those based on literature reviews. The first of these

(Andreson, Oades & Caputi, 2003) conducted a review of qualitative research, service-user

accounts and theoretical literature on recovery. Two psychological dimensions of recovery

that emerged from the literature were stages of recovery and component processes of

recovery. The authors set out to identify these stages and processes based on the full data set

of articles reviewed and identified four processes and five stages of recovery. The first of

these processes of recovery was finding hope. Hope could be attained from other people, such

as family or peer role models, or from within the person themselves. Hope is described as an

important catalyst for recovery, but also essential for maintaining the recovery process. The

second recovery process is redefining identity. Many of the articles reviewed described the

loss of identity that comes with a diagnosis of a mental illness. Following this, it is important

to develop a new identity into which the illness is incorporated, or to see the illness as

something separate to the self which must be accommodated. The third process of recovery is

finding meaning in life. Some articles reviewed by Andresen et al. showed how participants

found meaning in life from spirituality, creative pursuits or employment. The final process of

recovery was taking responsibility for recovery, which included managing one's own

treatment and making one’s own life choices.

The five stages of recovery developed in this model were based upon five studies

reviewed by Andreson et al. (2003) which identified stages or phases of recovery. Three of

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these (Davidson & Strauss, 1992; Young & Ensing, 1999; Spaniol et al., 2002) have also

been included in this current review paper. The first stage is labelled Moratorium and is

characterised by identity confusion, a lack of hope, denial and withdrawal in order to protect

the self from the judgements of others. The second stage is Awareness, where the person

begins to have hope that recovery may be possible and a better life could be achieved. The

third stage is preparation where the person prepares to begin working on their recovery. They

think about their strengths and weakness and their goals. They also learn about their illness,

the treatment and reconnect with other people. The fourth stage is Rebuilding, where the

person begins to work towards their goals and developing a new identity for themselves.

They have taken responsibility for their own treatment but may experience multiple setbacks

and will need to keep trying. The final stage is Growth which according to the authors could

be considered the outcome of recovery. Setbacks may still occur but the person is better able

to manage them as well as any symptoms that remain. They enjoy a meaningful life and are

positive about the future. They may even feel that the experience of mental illness has made

them a stronger person than they would have been without it.

This model of recovery seems to incorporate all of the aspects mentioned in all of the

models reviewed so far, which is likely to be due in part to the fact that several of the same

models used within Andresen et al’s (2003) study have been reviewed in this paper. By

including processes and stages, it is able to be a comprehensive model which can include all

components mentioned in the numerous studies it used to develop this new model. A key

issue with this model which is also relevant for other models which posit a stage model of

recovery is that there is still no empirical support for the idea of stages. Andresen et al

developed the Stages of Recovery Instrument (STORI) based on their five stage model but

their own psychometric analysis (Andreson, Caputi & Oades, 2006) and a follow up study by

Weeks, Hayward and Slade (2011) also failed to support a five-stage model and only

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confirmed three of the stages. Another limitation of this study is that it does not identify

clearly how the stages and processes of recovery are related to each another.

The second literature review to develop a recovery model (Leamy, Bird, Le Boutillier,

Williams and Slade; 2011) was based on a systematic review and narrative synthesis of

published models and descriptions of personal recovery. The recovery framework was

developed from a total of 87 studies and included 13 characteristics of the recovery journey

and five categories of recovery processes. This model is therefore based upon the most

comprehensive synthesis of empirical and theoretical work on recovery to date and includes

all of the models reviewed so far in this paper except Simonds et al. (2013). Leamy et al. also

mapped the models of recovery they reviewed onto the transtheoretical model of change

(Prochaska & DiClemente, 1982; Prochaska & DiClemente, 1983; Prochaska, DiClemente, &

Norcross, 1992). The characteristics of the recovery journey were described by Leamy et al.

as an active, individual and non-linear process which has stages or phases and is a struggle. It

is a multidimensional, gradual process which is a life-changing, trial and error experience.

Leamy et al. propose that recovery can occur without professional intervention but is aided

by a supportive environment. Finally, recovery can occur without a cure for the mental

illness. Leamy et al. also describe five categories of recovery processes represented by the

acronym CHIME. The first of these is connectedness and describes how interpersonal support

from peers, the community and close relationships are important to recovery. The second is

hope and optimism for the future, where the belief in the possibility of recovery is essential,

as is the motivation to make the changes necessary. It is important for people in recovery to

have a goal and be supported by people who inspire hope. The third category of recovery

process is identity, where rebuilding a positive sense of self and overcoming stigma are key.

The fourth category is finding meaning in life. This could be through spirituality, meaningful

social roles and by generally having a good quality of life. It is also important for people at

93

this stage to find a meaning for their experiences of mental illness. The final category of

recovery process is empowerment, where people have control over their life, take personal

responsibility for their decisions and focus on their strengths.

Leamy et al., (2011) also mapped 13 models of recovery onto the transtheoretical

model of change with the stages labelled precontemplation, contemplation, preparation,

action, and maintenance and growth. This appears to have been a useful way to map the

concept of recovery because, although not all stages of all models fit with these five

categories, most models have at least three stages which fit with the model of change.

In this model, recovery processes are described as things to achieve when moving

through the recovery journey. When compared to the recovery processes identified by

Andreson et al. (2003), there is a large amount of overlap, with Leamy et al (2011) having

one extra process labelled connectedness. However, Andreson et al. do mention

connectedness in several of their recovery processes. Again, this high degree of overlap is

likely to be due in part to the fact that several of the same papers and models were used to

develop them. However, it is still useful that they have managed to draw them all together

and see the commonalities and also map them onto an existing change model.

Comparison between recovery models derived from primary data and from literature

reviews

Overall, there is a high degree of overlap in terms of recovery processes between all

of these eight models of recovery, but they differ in terms of their structure. An interesting

difference between the models is the type of information they contained. Some models

included only themes of recovery (Simonds et al., 2014; Resnick et al., 2005), while others

included only phases of recovery (Deegan, 1988) and others included both phases and tasks

of recovery (Spaniol et al., 2002; Young & Ensing, 1999; Andreson et al., 2003; Leamy et al.,

94

2011). An overall comparison of the stages of recovery is shown in Table 2. As can be seen,

there is a great deal of overlap and perhaps the greatest degree of agreement is between the

two literature review papers (Andreson et al., 2003; Leamy et al., 2011) which was expected

given that they used several of the same models to develop their own models. It should of

course be noted that Leamy et al.'s model of the stages of recovery is taken from the model

for change and therefore was not developed by themselves. However, it does fit well with the

other models, indicating that it could be a useful model for structuring recovery which the

authors highlight as useful in guiding research and clinical efforts. Models differ slightly in

the point during the recovery process that they focus on; Deegan (1988) tended to focus on

the earlier stages of the recovery process, perhaps because these were the most salient to her,

while Young and Ensing's (1999) model focuses more on the later stages of recovery. Others

(Andreson et al.; Spaniol et al.; Leamy et al.) provide equal focus across the stages of

recovery. It is difficult to compare Simonds et al. (2013) with the rest of the models because

their model is based upon young people with common mental health problems whereas the

rest are based on adults with severe mental illnesses. It also differs from the rest in that it

includes the views of parents. However, there was still a high degree of overlap between the

themes identified by Simonds et al., and the rest of the models.

The tasks of recovery have also been described within models as change processes

and recovery processes. There was more variability between tasks of recovery than there was

for stages of recovery. However, some tasks appear more frequently across models than

others. Hope is the most frequently discussed task of recovery. This can include the hope that

a better life is possible, hope that goals can be achieved and sharing hope with supportive

others. Given the centrality of hope to recovery, the lack of hope given by professionals to

service-users in the past may well have delayed or even prevented recovery. Another key task

or process of recovery is taking responsibility and feeling empowered. This can include

95

taking responsibility for one's own treatment and making one’s own life decisions. Identity is

another task which was mentioned in several models; with the onset of a mental illness can

come a change in the person's identity as they struggle to reconcile their illness with their

previous self. As recovery progresses and the person comes to accept and understand their

illness, it can become a part of their identity or they may develop a new identity for

themselves.

In terms of the models which examined the themes of recovery, Simonds et al., (2014)

found that loss of self, renegotiating the self and anticipation of future self were the main

themes. Resnick et al., (2005) found that the four domains of recovery orientation were

empowerment, hope and optimism, knowledge and life satisfaction. These two sets of themes

look quite different to each other and this is in part likely to be due to the very different

methodologies that they employed and also the fact that one focussed on adolescent recovery

while the other focussed on adults. However, there are many similarities between the themes

identified by both of these papers and all of the models described above.

Discussion

This literature review has sought to establish what recovery means through an

analysis of the main models of recovery. It has included models developed from primary

research with children and adults as well as those developed from previous literature reviews.

A comparison between these models has found a large degree of overlap in terms of the

thematic content of recovery. Differences in the structure of models is evident with some

models based upon stages through which one moves and others based upon processes or tasks

to be achieved at some point during the recovery journey.

Models reviewed in this paper postulate that the phases of recovery tend to follow a

general pattern of feeling overwhelmed by the diagnosis and the situation, followed by the

96

ignition of hope and the realisation that a better life could occur. This then leads to people

trying to make changes in their lives although they may experience many setbacks. If they

manage to persevere despite these, they will manage to move forward with their lives, regain

their old abilities and/or develop new experiences and roles for themselves. It is likely that

these changes would lead to an improved quality of life overall and, although symptoms may

still be present, the person is now more confident at managing them and is better able to deal

with setbacks. Theoretically, by this stage, the person should be able to live a satisfying life

where the illness has a minimal impact due to the fact that the person is better equipped to

manage any impact it does make. The models propose that, as the person moves through the

stages of recovery, certain processes are required to occur. The most prevalent of these are

finding hope, taking responsibility and developing a new stable identity.

There are some common limitations of these models. The vast majority tend to

include participants who have experienced severe mental health problems, such as psychosis.

It is questionable whether this is the most useful population to investigate because many

people who use mental health services will be experiencing less severe difficulties and the

findings from studies about more severe difficulties may not generalise to them. For example,

it is possible that the recovery journey may be different for people experiencing more mild

problems than those experiencing psychosis. A second issue with some of the models is the

use of stage models which are not empirically supported. As described briefly above, there is

no psychometric support for the idea of stages within recovery models. There is therefore

questionable utility in creating models of recovery based upon stages. It may be that those

models included in this review which focus on themes and processes rather than stages are

more useful and potentially accurate because they are based on information drawn solely

from the participants without being organised into stages identified by the researchers.

97

It is interesting to note the similarities between recovery models and other models of

behavioural change, including the motivation to change literature. Research investigating

behavioural change has identified that motivation and confidence are key aspects which are

also interrelated (Dixon, 2008; Michie et al., 2005). Important aspects of both motivation and

confidence are self-efficacy, empowerment, self-esteem and goal setting which are also key

within the recovery literature. These similarities between recovery and behavioural change

can help to explain the usefulness of using the transtheoretical model of change (Prochaska &

DiClemente, 1982; Prochaska & DiClemente, 1983; Prochaska, DiClemente, & Norcross,

1992) as a model for recovery. As described above, this model provided a good fit with other

models of recovery and this highlights again the similarities between recovery and

behavioural change literature.

Limitations of this review include the selection of papers; it is possible than some

models may have been missed due to the method used. However, given that several recent

and comprehensive literature review papers were included, it is likely that most models of

recovery were identified from these. A second limitation is the subjectivity involved in

analysing some of the models. Some (e.g. Deegan, 1988) do not explicitly outline each of the

stages and therefore it is possible that readers may identify different stages to those identified

here.

As can be seen from this review, there has been a large amount of research into the

meaning of recovery and what recovery involves. However, all of this research has been

conducted using participants who have been using mental health services. Given the recent

shift to recovery-oriented services, it is also important to know what people without contact

with mental health services think recovery is and what it is not. This is because these people

may come into contact with services at some point in their lives and their concept of recovery

is relevant for how they perceive and use services. For example, some people may be

98

unaware of the shift in services from clinical to personal recovery and may therefore have

expectations of services in line with the former rather than the latter. Future research could

seek to examine what people with no experience of mental health services believe recovery to

be. Building on this study, future research could also examine how people's concepts or

expectations of recovery influence their progress when they make contact with mental health

services.

Table 1

99

Summary of all included models.

Model Includes Main Concepts

Simonds, Pons, Stone, Warren & John, 2013

Three themes of recovery 1.Loss of self

2. Renegotiating the self

3. Anticipation of future self

Deegan, 1988 Four phases of recovery 1. Denial

2. Despair and anguish

3. Hope

4. Willingness to act

Davidson & Strauss, 1992 Four aspects of rediscovering a sense of self

1. Discovering a more active self

2. Taking stock of the self

3. Putting the self into action

4. Appealing to the self

Young & Ensing, 1999 Five stages of recovery, each containing change processes

1. Overcoming "stuckness"

2. Discovering and fostering self-empowerment

3. Learning and self-redefinition

4. Returning to basic functioning

5. Improving quality of life.

Spaniol, Wewiorski, Gagne & Anthony, 2002

Four phases and three main tasks of recovery as well as challenges and supports to recovery

Phases:

1. Overwhelmed by the disability

2. Struggling with the disability

3. Living with the disability

4. Living beyond the disability

Tasks:

1. Develop explanations

2. Gain control over illness

3. Move into meaningful roles

Resnick, Fontana, Lehman & Four domains of 1. Empowerment

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Rosenheck, 2005 recovery orientation 2. Hope and optimism

3. Knowledge

4. Life satisfaction

Andreson, Oades & Caputi, 2003

Five stages and four processes of recovery

Stages:

1. Moratorium

2. Awareness

3. Preparation

4. Rebuilding

5. Growth

Processes:

1. Finding hope

2. Redefining identity

3. Finding meaning in life

4.Taking responsibility for recovery

Leamy, Bird, Le Boutillier, Wiliams & Slade, 2011

Five categories of recovery processes, 13 characteristics of the recovery journey and five stages

Stages:

1. Precontemplation

2. Contemplation

3. Preparation

4.Action

5. Maintenance and growth

Categories:

1. Connectedness

2. Hope and optimism about the future

3. Identity

4. Meaning in life

5. Empowerment

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Table 2.

Comparison of stages or phases of recovery

Authors Stages

Andreson, Oades &

Caputi, 2003

Moratorium Awareness Preparation Rebuilding Growth

Spaniol, Wewiorski, Gagne &

Anthony, 2002

Overwhelmed by the disability

Struggling with the disability

Living with the disability

Living beyond the disability

Young & Ensing, 1999

Initiating recovery

Regaining and moving forward

Improving quality of life

Leamy, Bird, Le Boutillier, Wiliams & Slade, 2011

Precontemplation Contemplation Preparation Action Maintenance and growth

Deegan 1988 Denial Despair and anguish

Hope Willingness to act

Davidson & Strauss, 1992

Discovering a more active self

Taking stock of the self

Putting the self into action

Appealing to the self

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MRP Proposal (initial project)

The occurrence and correlates of accommodation in siblings of people with obsessions

and compulsions.

Introduction

An obsession is a persistent thought, image or urge that intrudes into consciousness

and, due to its unpleasant or threatening content, typically prompts fear and anxiety. A

compulsion is a mental or behavioural ritual performed to reduce anxiety or other unpleasant

effects (e.g. shame, guilt). Obsessions and compulsions are theorised to exist on a continuum

in the population and research supports this contention (Simonds & Elliott, 2001). Some

individuals with significant levels of obsessive-compulsive problems may be diagnosed with

Obsessive Compulsive Disorder (OCD). Additionally, it is evident from several studies and

clinical observation that many individuals with significant obsessive-compulsive problems do

not seek help for their problems for some years, if at all, due to shame and embarrassment

(Simonds & Elliott, 2001). Taken together, these two points suggest that, as with other forms

of psychological distress, obsessive-compulsiveness is managed within the community, often

within the family system. This study focuses on accommodation of obsessive-

compulsiveness by siblings in the community. Several studies have focussed on

accommodation by parents of children and adults with obsessions and compulsions and a few

studies have focussed on spouses and intimate partners but none has focussed on siblings.

Additionally, the existing evidence base on accommodation is limited by a focus on family

members of those individuals who attain a diagnosis of OCD or who are treated in specialist

OCD services, thus representing a specific subset of individuals with these problems. Little

is known about the occurrence of accommodation in the community.

106

Research consistently shows that accommodation is common in families where a

member has obsessions and compulsions. It is defined as "the process whereby family

members assist or participate in the patient's [sic] rituals" (Albert et al., 2010, p. 204). The

most common types of compulsion/ritual involve washing and safety checks and since these

often centre around the home environment, family members can become involved in the

rituals, which can be very distressing for both family members and the person with obsessive-

compulsive problems (Derisley, Libby, Clark & Reynolds, 2005; Shafran, Ralph & Tallis,

1995; van Noppen & Steketee, 2009). Some of the most common forms of accommodation

include watching the person complete rituals, providing reassurance and assisting the person

to avoid anxiety-provoking situations. Previous research involving adults with a diagnosis of

OCD has demonstrated that 88.2% of parents and spouses provide some form of

accommodation (Calvocoressi et al., 1995), with similar rates being found with children and

their parents (e.g. Flessner et al., 2011). In addition to the impact on the family system,

accommodation is also detrimental to recovery because it shields the individual with

obsessive-compulsive problems from the anxiety-provoking situation, thereby preventing

exposure and the opportunity to realise that their feared outcome is unlikely (Storch et al.,

2008). Merlo, Lehmkuhl, Gefken & Storch (2009) demonstrated that a reduction in the

amount of accommodation provided by the family was associated with an improved therapy

outcome in a study with children and their parents.

A review of the current evidence (Palmer, unpublished) suggests several factors that

might increase the likelihood of accommodation. One of these is anticipated anger or distress

by the person with obsessive-compulsiveness if accommodation is not provided (Futh,

Simonds & Micali, 2012). Futh et al. (2012) also showed that family members are caught in

an uncomfortable bind: they know accommodation is counterproductive but find it difficult to

tolerate the individual’s distress, and their own. This finding has implications for the current

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study: Futh et al.’s participants were engaged with a specialist OCD clinic and, as such, had

access to specialist support. These issues might be more prominent in community samples.

A family history of anxiety disorders other than obsessive-compulsiveness, including

in the person providing the accommodation, has been found to correlate with accommodation

(Albert et al., 2010; Flessner et al., 2011). The level of symptoms of depression reported has

also been found to correlate with accommodation, although given the cross-sectional nature

of the research it is not clear if depression is a cause or consequence of accommodation

(Futh, Simonds & Micali, 2012). Obsessive-compulsiveness in the person providing

accommodation also correlates with the amount of accommodation provided (Peris et al.,

2008). A further predictor of accommodation in previous studies is the particular obsessions

and compulsions experienced. The presence of contamination/washing/cleaning problems has

been found to be associated with accommodation (Albert et al., 2010; Flessner et al., 2011;

Stewart et al., 2008). However, few studies have focussed specifically on the type of

obsessive-compulsive problem and, instead, have used generic symptom checklists. In this

regard, severity of obsessive-compulsiveness is positively correlated with the provision of

accommodation (Stewart et al., 2008; Flessner et al, 2011; Caporino et al., 2012) However,

Peris et al. (2008) found that symptom severity was not associated with accommodation and

therefore raise a question as to whether there is a straightforward correspondence between the

two. It is a widely established and consistently replicated finding that there is poor

correspondence between symptom severity measures completed by the person with problems

and other informants such as family members (De Los Reyes & Kazdin, 2005). This suggests

that assessment of the perception of severity from the family member’s perspective is

important to assess when investigating correlates of accommodation. Overall then, potential

correlates of accommodation include distress, anxiety and obsessive-compulsiveness in the

person providing accommodation and the wider family, the presence of washing or

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contamination type symptoms, the perceived severity of the problems, and motivations for

providing or resisting accommodation (e.g. to avoid anger, distress, knowing it is

counterproductive).

As noted, previous research into accommodation has generally neglected to include

siblings. Although obsessions and compulsions can occur throughout the lifespan, they

typically first emerge during childhood (Geller et al., 1998). Given that siblings typically

develop together and spend significant amounts of time with each other, coupled with the

evidence that accommodation is commonplace in families, it is likely that siblings become

involved in providing accommodation. It is therefore important to focus research on siblings

to provide a more complete picture of accommodation within families.

Following a review of the literature (Palmer, unpublished) further methodological

extensions to the current evidence base are indicated. Firstly, past studies have not measured

the amount of time family members spend together. It is likely that the amount of time spent

together will be related to the amount of accommodation provided. However, this is an

empirical question that has not been investigated before. Additionally, past studies have

focussed on the frequency and type of accommodation provided but not on the mechanisms

for its provision (e.g. face to face, via phone, or even social media). A further expansion to

the current evidence base is to assess not just obsessive-compulsiveness in the person

providing accommodation but also obsessive compulsive beliefs, such as personal

responsibility and intolerance of uncertainty. Obsessive-compulsive beliefs are seen as

integral to the experience of obsessive-compulsiveness and, as such, this will provide a fuller

assessment of phenomenology in the sibling providing accommodation.

Aims

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The main aims of this study are (1) to investigate whether siblings in the community

provide accommodation to a brother/sister and to determine the quantity and type of this

accommodation and how it is provided; and (2) to investigate whether key correlates of

accommodation discovered from previous research are also relevant for sibling

accommodators.

Two novel aims of this study are: (1) to see if there is a correlation between the

amount of time spent together and the amount of accommodation provided; and (2) to

examine whether obsessive-compulsive beliefs in the participant correlate with the amount of

accommodation they provide.

Main Research Questions and Hypotheses

Research questions. In a community sample, what is the frequency and type of

accommodation provided by siblings and how is that accommodation provided?

Hypotheses.

1. Siblings who report a family history of obsessions and compulsions or other anxiety

disorders will report more accommodation than siblings who do not.

2. Siblings who report they have a history of OCD or obsessions and compulsions or

another anxiety disorder will report more accommodation than siblings who do not.

3. Obsessive-compulsiveness, obsessive-compulsive beliefs, beliefs about and

motivations for accommodation, anxiety and depression will be positively correlated

with degree of accommodation provided.

4. More accommodation will be provided by those participants who have a sibling with

washing/contamination problems.

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5. Where perceived severity of the obsessions and compulsions is higher, more

accommodation will be provided.

6. Where siblings spend more time together, more accommodation will be reported.

Method

Participants. The participants in this study will be individuals, aged 16 or older, who

have a sibling who experiences obsessions and compulsions. The person experiencing the

obsessions and compulsions will not be taking part in this study.

The recruitment sources will be (a) UK-based OCD charities (OCD-UK and OCD-

Action) and affiliated national support groups. Both charities have dedicated online forums

and support groups for siblings seeking support or information and they hold an annual

conference for members. Both charities estimate that up to 50 siblings could be recruited;

and (b) a Twitter account and Facebook page for the study will be set up to reach siblings in

the community who may not be engaged with OCD charities. The proposed study would be

advertised directly to the desired participants, not to their siblings experiencing obsessions

and compulsions. Sample size calculations (see data analysis section) indicate that 64

participants will be needed (80% power, alpha = .05) when expecting a medium effect size

correlation (Pearson’s) based on previous research (e.g. Peris et al., 2008). The main reason

for recruiting participants from charities and the community is that, as noted in the

background section, many individuals with obsessions and compulsions do not reach

specialist treatment services. Recruiting from this broader community base will provide data

on the rates of accommodation in community samples.

Design. The study will involve completing a battery of questionnaires either online or

by post.

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Measures. Four validated scales will be used along with a series of individual

questions designed specifically for this study. See Appendix A for reliability and validity data

for each measure. Cronbach’s alpha will be calculated on the validated scales in the study

sample, as is good practice. All of these measures have been formatted as one full

questionnaire (see Appendix B). The measures are described below with reference to which

variable they are measuring.

Family Accommodation. The Family Accommodation Scale Self-Report (FAS-SR;

Pinto, Van Noppen & Calvocoressi, 2012) asks respondents to identify which obsessions and

compulsions their family member (in this case sibling) experiences. Then the respondent

rates the extent to which they have provided a number of forms of accommodation in the past

week. In the current study minor modifications will be made to reflect the non-diagnostic

focus of the study. See Appendix C for the original FAS-SR.

A series of questions have also been designed to assess reasons and beliefs about

accommodating. Participants will also be asked about the ways in which they provide

accommodation.

Participants' Experiences of Obsessions and Compulsions. The Obsessive-

Compulsive Inventory-Revised (Foa et al., 2002) is an 18-item measure of the extent to

which the respondent has been distressed/bothered by common obsessions and compulsions

in the past week. This yields an overall obsessive-compulsive score.

Participants will also be asked whether they have a diagnosis of OCD.

Participants' Obsessive Compulsive Beliefs. The Obsessive Beliefs Questionnaire

(Obsessions Compulsive Cognitions Working Group, 2004) is a 44-item scale measuring

participants’ obsessive-compulsive beliefs.

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Participants' mental health. The Depression Anxiety Stress Scale (Lovibond &

Lovibond, 1995) is a 21-item measure made up of three scales measuring depression, anxiety

and stress.

Participants will also be asked whether they have a diagnosis of an anxiety disorder,

and whether they have received treatment for anxiety, depression or any other psychological

problems.

Participants' perception of severity of their siblings' obsessions and compulsions.

This will be measured by individual items developed for this study. Firstly, participants will

be asked whether their sibling has any comorbid disorders, the age at which they first

experienced obsessions and compulsions and whether they have received treatment for them.

Secondly, they will be asked how distressed they believe their sibling is by their obsessions

and compulsions, how impaired they believe they are in a number of domains of functioning,

and their perceived capacity to manage independently of others.

Amount of time siblings spend together and type of contact they have. Items to

assess this have been developed specifically for the study.

Family history of mental health. Participants will be asked whether anyone in their

extended family has experienced obsessions and compulsions or experienced significant

problems with anxiety.

Procedure. The study will be advertised on the charities' online forums, at national

support group meetings, and at their annual conferences. Flyers will be prepared that have a

link to an online version of the survey and the researcher’s contact details. If participants

would prefer to receive a paper copy or if they would like to ask any questions, they will be

asked to contact the researcher. For those completing the online survey, a Participant

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Information screen will be presented including details of the right to withdraw. For those

completing a paper copy, the Participant Information Sheet will be enclosed. A brief advert

for the study and a link to the online survey will be posted on Facebook and Twitter pages set

up for the study. Once consent has been given, participants will enter the survey and

complete the battery of questionnaires. At the end, a debrief screen will be presented

outlining the aim of the study and the rationale behind it. Participants will also be given

details on who they can approach if they feel in need of further support. Participants

completing the measures by hand will receive this information by post.

Ethical considerations. It is not anticipated that the study will pose significant risks

to participants’ welfare. There is a possibility that completing the measures may focus the

person on their own distress at having a family member with obsessions and compulsions. It

is also possible that some participants will have their own issues with obsessive-

compulsiveness, anxiety, stress or depression. Consequently, participants will be made aware

in the information sheet that the study focuses on these topics and this will allow them to

decide if they want to take part. It will also be made clear to them that they can withdraw

from the study during participation without having to provide a reason. Additionally, as is

common practice in non-clinical investigations of these issues, participants will be provided

with sources of advice and further support should they feel concerned about their own

welfare after taking part. Examples of typical information sources included in the debrief are

GP consultation, the Samaritans, Mind and OCD and other anxiety charities. Some

participants will be recruited via OCD charities and therefore will already have established

connections with them should they wish to use them for support.

I will be applying to the FAHS Ethics Committee only for this study. The charities

find this acceptable and have a history of supporting OCD-related research in the School of

Psychology.

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R&D Considerations. This study will not require NHS R&D approval.

Proposed Data Analysis. Firstly, descriptive analysis of the FAS-SR data will allow

an assessment of the frequency and type of accommodation provided by siblings. Relevant

items on the questionnaire designed for this study will also be analysed descriptively (e.g. the

frequency with which different mechanisms for providing accommodation are utilised).

1. Siblings who report a family history of obsessions and compulsions or other anxiety

disorder will report more accommodation than siblings who do not.

This hypothesis will be analysed using two independent samples t-tests.

2. Siblings who report they have a history of OCD/obsessions and compulsions or

another anxiety disorder will report more accommodation that siblings who do not.

This hypothesis will be analysed using two independent samples t-tests.

3. Obsessive-compulsiveness, obsessive-compulsive beliefs, beliefs about and

motivations for accommodation, anxiety and depression will be positively correlated

with degree of accommodation provided

This hypothesis will be analysed using bivariate correlations.

4. More accommodation will be provided by those participants who have a sibling with

washing/contamination problems than those who do not

An independent samples t-test will be used to analyse this hypothesis.

5. Where perceived severity of the obsessions and compulsions is higher, more

accommodation will be provided.

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As described above, perceived severity will be measured by a number of factors. Independent

samples t-tests will be used to analyse whether cormorbid disorders and treatment received

affect the amount of accommodation given. Bivariate correlations will be used to analyse

whether the age of onset, perceived distress, perceived impairment and perceive capacity to

manage independently of others are associated with accommodation.

6. Where siblings spend more time together, more accommodation will be reported.

A bivariate correlation will be used to test this hypothesis.

Service User and Carer Consultation / Involvement. The Participant Information

Sheet will be presented at a Service User and Carer Group for their feedback. Service-user

feedback has already been obtained for the questionnaire designed for the study and

descriptions of mental health problems have been altered accordingly.

Feasibility Issues. Achieving the required number of participants is the main

feasibility issue within this study. While the charities appear confident that more than 64

participants can be achieved between them, it will be prudent to leave as much time as

possible for data collection in order to maximise the chances of achieving enough

participants. Twitter and Facebook will also be used in order to broaden the potential

participant base beyond that offered by the charities.

Dissemination strategy. The findings will be fed back to the two charities in a format

of their choice (e.g. brief article). Participants can also request feedback by contacting the

researcher directly. The individual paper or a poster may also be presented at any relevant

conferences. The paper will be submitted to a relevant peer-reviewed journal such as the

Journal of Obsessive-Compulsive and Related Disorders.

Study Timeline. See appended Gantt Chart (Appendix D).

116

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Albert, U., Salvi, V., Saracco, P., Bogetto, F. & Maina, G. (2007). Health-related quality of

life among first-degree relatives of patients with obsessive-compulsive disorder in

Italy. Psychiatric Services, 58, 970-976.

Amir, N., Freshman, M. & Foa, E. B. (2000). Family distress and involvement in relatives of

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findings. Australian Educational and Developmental Psychologist, 17, (2) 82-102.

Calvocoressi, L., Lewis, B., Harris, M., Trufan, S. J., Goodman, W. K., McDougle, C. J. &

Price, L. H. (1995). Family accommodation in obsessive-compulsive disorder.

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Cooper, M. (1996). Obsessive-compulsive disorder: Effects on family members. American

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Crawford, J. R. & Henry, J. D. (2003). The Depression Anxiety Stress Scales (DASS):

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further study. Psychological Bulletin, 131, 483-509.

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functioning in parents of young people with obsessive-compulsive disorder with

anxiety disorders. British Journal of Clinical Psychology, 44, (3), 439-444.

Flessner, C. A., Freeman, J. B., Sapyta, J., Garcia, A., Franklin, M. E., March, J. S. & Foa, E.

(2011). Predictors of parental accommodation in pediatric Obsessive-Compulsive

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(2002). The Obsessive-Compulsive Inventory: Development and validation of a short

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MRP Literature Review (initial project)

Abstract

Relatives of individuals with Obsessive-Compulsive Disorder (OCD) have been found to

experience burden, distress and disruption to their routine and family life. Accommodation by

family members of OCD symptoms is common, but is detrimental to recovery from the

disorder. Despite this, there is relatively little research in this area. This article seeks to

review the existing research into accommodation of OCD and identify potential avenues for

future research. A total of 14 papers that focussed on accommodation were discovered and

grouped into three categories: those that investigate the impact of accommodation on the

person with OCD, those that investigate the impact of accommodation on the family, and

those that investigate predictors of accommodation. The findings from this review support

previous research indicating that accommodation is common and associated with distress

within the family. It was also found that families experience stress in deciding whether or not

to accommodate, with some reporting anger from the person with OCD if they did not

accommodate. Accommodation was found to be unhelpful to recovery in the long-term, and

an effective target for intervention.

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Introduction

OCD is characterised by obsessions and compulsions that can limit and disrupt many

aspects of an individuals' life (Cooper, 1996; Piancenti, Bergman, Keller & McCracken,

2003). Obsessions are repeated, unwanted thoughts or images or urges that cause anxiety, and

compulsions are behaviours that the individual feels forced to perform in an attempt to avoid

or decrease anxiety (Torres, Hoff, Padovani & Ramos-Cerqueira, 2012). OCD usually

emerges during childhood or adolescence and is thought to affect 1-3% of adult and child

populations (Douglas, Moffitt, Dar & McGee, 1995; Futh, Simonds & Micali, 2012;

Lebowitz, Panza, Su & Bloch, 2012; Ruscio, Stein, Chiu & Kessler, 2010; Samuels &

Nestadt, 1997). Family members of individuals with OCD have a lower quality of life than

the general population and experience greater burden than both the general population and

caregivers of individuals with depression (Albert, Salvi, Saracco, Bogetto & Maina, 2007;

Stengler-Wenzke, Kroll, Matschniger & Anermeyer, 2006; Vikas, Avasthi & Sharan, 2012).

Due to the nature of the symptoms and the fact that they often occur in the home, family

members of individuals with OCD are often involved in the symptoms, which can be very

distressing both for the person with OCD and their family (Derisley, Libby, Clark &

Reynolds, 2005; Shafran, Ralph & Tallis, 1995; van Noppen & Steketee, 2009). Family

members can be called upon by the individual with OCD to help them to complete

compulsions, to wait for them while they complete compulsions or provide required materials

for compulsions. Family members may take part in rituals in an attempt to lessen their

relatives' anxiety and distress or in an attempt to keep family life running as smoothly as

possible. This can sometimes mean that families need to make significant changes to their

routine or lifestyle. While OCD clearly impacts upon the family, the family's response to the

OCD can also influence the disorder (Maina, Saracco & Albert, 2006). Accommodation is

one way in which families can influence the development and course of the disorder.

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Accommodation is "the process whereby family members assist or participate in the patient's

rituals" (Albert et al., 2010, p. 204). It can include facilitating rituals, providing reassurance

and assisting with compulsive behaviours (Caporino et al., 2012). Accommodation has been

found to be ubiquitous among families of both adults and children with OCD, with around

90% of family members accommodating (Cooper, 1996; Van Noppen, 2002).

Accommodation has been found to have a detrimental effect on recovery as the patient is

protected from the anxiety-provoking situation and is therefore less likely to realise that their

feared outcome is unlikely (Storch et al., 2008). Given the detrimental effect of

accommodation on recovery rates, it is surprising that there is relatively little research in this

area. This review aims to present and discuss some of the literature on accommodation of

OCD, examining why accommodation occurs and what the effects of accommodation are.

Potential avenues for future research will also be discussed.

Search Strategy

A limited number of studies have investigated family accommodation in OCD.

Therefore the search focussed on yielding the maximum number of results at first. To this

end, the 'select a field' option was left blank for most searches. A variety of search terms were

used and these were based around two categories of words: 'accommodation' and 'obsessive

compulsive disorder'. It was found during initial searches that 'family accomm* provided

more relevant and less irrelevant references than 'accomm*'. It was also found that using the

term 'obsessive compulsive disorder' yielded more results than the term 'OCD' and the same

results as 'obsessive*'. Therefore, the search terms used for future searches were 'family

accomm*' and 'obsessive compulsive disorder'.

11 databases were searched as part of the literature search. Details of these searches

are provided in Table 1 in Appendix. For all searches, no date limits were applied; the dates

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in the table represent the dates of references that were found. The vast majority of references

that were found to be useful and therefore used in this review were discovered in the initial

searches in PsycInfo. From the subsequent searches, 6 new and relevant papers were

discovered.

148 unique references were identified from this literature search. Of these, 75 were

considered relevant. To be considered relevant, references needed to focus on family

accommodation in OCD; references that focussed purely on OCD without any mention of

accommodation were excluded. References also had to be from peer reviewed journals and

available in the English language. Having applied these exclusion criteria, 43 references

remained. These were gathered and read in detail. While all of these references involved

family accommodation in OCD, they were next grouped by their focus. For example, a

number of papers focussed on treatment of OCD rather than the occurrence or effects of

accommodation. Seven of the papers were review papers, although the focus of these other

reviews were different to that being completed here. Table 2 in Appendix provides the details

of these groupings.14 references were found that primarily investigated family

accommodation in OCD and these will be critically evaluated and compared in the following

section.

Review Section

As described above, the search strategy elicited 14 papers which were considered

central to the review question and will therefore now be discussed. The papers were

organized into three categories: studies that investigate the impact of accommodation on the

family; studies that investigate the impact of accommodation on the individual with OCD;

and, studies that investigate predictors of accommodation.

Studies investigating the impact of accommodation on the family

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Of the studies investigating the impact of accommodation on the family, two had a

quantitative design (Ramos-Cerqueira, Torres, Torresan, Negreiros & Vitorino, 2008; Storch

et al., 2009), two had a mixed methods design (Calvocoressi et al., 1995; Futh et al., 2012)

and one had a qualitative design (Lebowitz, Vitulano & Omer, 2011).

Of the two quantitative designs, Ramos-Cerqueira et al. (2008) focussed on adults

with OCD and their caregivers (25 spouses, 20 parents, four children, one sibling) while

Storch et al. (2009) investigated children with OCD and their parents (53 mothers, eight

fathers, one grandparent). Both studies required that a battery of questionnaires be completed

by both the individual with OCD and their family member. Both of these batteries included

the Family Accommodation Scale (FAS) which is usually a clinician-administered 13-item

questionnaire indicating the extent to which the family member completing it had

accommodated OCD symptoms in the previous month (Calvocoressi et al., 1995). Storch et

al. found that family accommodation was positively associated with three of the four Parent

Experience of Chronic Illness subscales: Guilt and Worry, Unresolved Sorrow and Anger and

Long-term Uncertainty. The correlations for these three factors ranged from .27 to .40,

indicating mild to moderate effect sizes. Ramos-Cerqueira et al. found that 90% of their

participants indicated some accommodation with 50% reporting moderate to very severe

levels of accommodation. They also found that 42% of the caregivers in their sample had a

common mental health disorder, as assessed using the Self-Report Questionnaire (Harding et

al., 1980), which investigates mainly depressive and anxiety symptoms. This issue is a point

for discussion later in this review as it has been suggested previously that if a family member

has a mental health disorder, particularly an anxiety disorder, this can influence the degree to

which they accommodate their family member's symptoms (Albert et al., 2010). A limitation

of this study is the fact that 12% of the caregivers were not living with the individual with

OCD. It is possible that findings may differ in a sample comprised solely of family members

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who are living with the affected individual as they would presumably be spending more time

with the person with OCD and therefore may report more accommodation than they may

have reported if they were not living together. It may be useful for studies to measure the

amount of time spent with the affected relative to see if this correlates with levels of

accommodation. However, 90% of their sample indicated some level of accommodation

which is a finding in line with previous research. A key limitation of the Storch et al. study is

that the majority of the parents included were mothers and therefore the results may not

generalize as well to fathers; a limitation which the authors point out themselves. The authors

also note that all except one of the measures were parent-rated and this may have inflated the

relationships they found between variables due to a lack of method variance. It is possible

that parental views of children’s symptoms may differ from the child's own views and

therefore it can be useful to use both parent and child rated instruments.

The remaining three studies that focussed on the impact of accommodation on the

family used mixed methods designs (Calvocoressi et al., 1995; Futh et al., 2012) or purely

qualitative designs (Lebowitz, Vitulano & Omer, 2011). Futh et al., and Lebowitz et al.

recruited a sample of children with OCD and their parents, while Calvocoressi et al. recruited

a sample of adults with OCD and their parents or spouses. Calvocoressi et al. developed a set

of questions regarding family accommodation and pilot tested these before carrying out the

study. They then developed a clinician-administered semi-structured interview – the Family

Accommodation Scale (FAS) - based on the results of this pilot test. The FAS was

administered to caregivers in the sample along with a battery of other questionnaires.

Calvocoressi et al. found that 88.2% of respondents engaged in some form of

accommodation. Levels of accommodation were correlated with distress that caregivers

experienced if they did not accommodate, and the expectation of anxiety and anger from the

patient if they did not accommodate. Calvocoressi et al. concluded that family

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accommodation occurs in a context of family stress. Similarly, Lebowitz, Vitulano and Omer

found that parents of children with OCD expressed distress and helplessness. They recruited a

small sample of 10 Israeli children and their parents. For six of these children, only the

mother was interviewed and in the remaining cases, both parents were interviewed together.

Semi-structured interviews were conducted and analysed using Grounded Theory. The

authors argue that a kind of coercive behaviour that appears to be unique to OCD was

discovered. The themes from the analysis were organised along two dimensions: OCD-

specific symptoms and goals of coercive behaviour. Three goals of coercive behaviour were

identified: to make other people do things that the child would otherwise have to do, to stop

others from doing things that the child forbids them to do, and to allow the child to do the

things they feel they need to. These goals may be achieved through verbal abuse, displays of

emotional or physical distress and even physical violence. Lebowitz et al. then combined

these coercive behaviours with the main OCD symptom dimensions. In the case of

contamination/cleaning, the child imposes particular rules on the family in order to manage

contamination-related disgust. In the case of aggression/sex/harm/checking the child may

prohibit the use of knives or movies with content that is upsetting to them. In the case of

symmetry/order the child imposes rules about the layout of rooms to ensure that no changes

are made. Finally, with hoarding the child may refuse to allow the parents to throw anything

away. In summary, Lebowitz, Vitulano and Omer suggested that children with OCD engage

in what appears to be very disruptive behaviour in order to manage distressing thoughts and

feelings. A limitation of this study is the fact that some interviews were conducted with only

one parent present whereas others were conducted with both present. It is possible that having

a partner present may have influenced the information provided by the parents as they may

have been mindful of the feelings and opinions of the other. Also, to be selected for the study,

parents had to express that their child had behavioural problems. Therefore, the sample may

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not be representative of or generalizable to other children with OCD in which the behavioural

disruption observed is not typical.

Futh et al., (2012) conducted a mixed methods study to investigate the impact of

accommodation on the family and on mothers and fathers separately. Parents were asked to

write narratives about the experience of having a child with OCD. These narratives were

then assessed using thematic analysis and computerized linguistic analysis. Parents were also

asked to complete a battery of standardized measures including the FAS. The thematic

analysis revealed four overall themes. The first was the parent's struggle to make sense of

OCD. Most parents viewed OCD as external to their child but still expressed

incomprehension as the symptoms appeared so irrational. The second theme was the power of

OCD. Parents expressed frustration and helplessness and expressed the pain of losing their

child to OCD. The third theme was the impact of OCD. Parents described the impact of OCD

on their child as pervasive, affecting many aspects of their lives. They also described the

experience of caring for their child as relentless, time-consuming and demanding. Mothers in

particular reported feel emotionally exhausted and overwhelmed, as well as socially isolated.

The final theme was engagement with OCD. A tension was found between accepting or

rejecting urges to accommodate. Parents reported that they did not want to accommodate as

they knew it would not help their child overcome OCD, but reported giving in due to the

child's distress and then feeling guilty for this. The linguistic inquiry word count revealed that

parent narratives included a high proportion of emotional words, particularly negative ones.

Mother's narratives were significantly longer than father's. Standardized measures revealed

that rates of accommodation were high and the most common types were waiting for the

child to complete compulsions (45% daily) and watching the child complete rituals (43%).

There was no difference between mothers and fathers in the rate of accommodation or of

depression, but mothers reported significantly more stress and anxiety. For mothers, total

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levels of accommodation were positively correlated with stress, depression and anxiety, and

they used more coping strategies than fathers. A limitation of this study which is identified by

the authors is that they cannot be sure of the order in which participants completed the test

battery. The experience of writing the narrative could have affected the responses given for

the measures of affect if the narrative were completed first.

There are five limitations that can be discussed with reference to all of these studies.

Firstly, all five of these studies have used homogenous samples consisting of mainly white

participants. This limits the generalizability of the findings. Secondly, none of these studies

assessed the amount of time that the family members or caregivers spent with the adult or

child with OCD. This is particularly important in studies where the participants were adults

such as Ramos-Cerqueira et al. (2008) where the authors recorded that 12% of respondents

did not even live with the person with OCD. It is also relevant in studies involving child

participants such as Lebowitz et al. (2011), where some of the mothers and fathers

participating were divorced and so possibly not both living with the child. It appears likely

that not living with the person with OCD is going to affect the amount of accommodation

provided. Thirdly, the design of these studies limits causal inferences. Prospective designs

could be used in future to support hypotheses about causal relationships. Fourth, the FAS was

designed to be a clinician-administered interview (Calvocoressi et al., 1995). A number of

authors (e.g. Futh et al., 2012; Storch et al., 2009) used the scale as a self-report measure in

their studies. However, the FAS demonstrates good psychometric properties in studies that

have used it in this way. Ramos-Cerqueira et al. also used the FAS but did not make it clear

whether it was clinician-administered or used as a self-report tool in their study. The final

issue relevant to all of these studies is whether the diagnosis was confirmed for the

participants with OCD. Ramos-Cerqueira et al. Calvocoressi et al. and Lebowitz et al. all just

state that their participants had OCD according to the criteria of DSM-III or DSM-IV, but do

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not state by whom or how this was assessed. Storch et al. only included participants with a

primary diagnosis of OCD made by a psychologist which was based on a clinical interview

and confirmed by one of the study authors. Futh et al. had some participants from an OCD

clinic and so had a diagnosis of OCD confirmed by a clinician (N = 34), but also some

participants from an OCD charity where the diagnosis was self-reported (N = 9). Findings on

accommodation might vary between samples comprising only participants with a confirmed

diagnosis of OCD as compared to samples that also include those with a non-confirmed

diagnosis.

Studies that investigate the impact of accommodation on the person with OCD

The second group of papers identified from the literature search focus on the impact

of accommodation on the person with OCD. Some of these papers look at the impact of

accommodation on treatment outcome. All of the four studies within this group are

quantitative and three employed a cross-sectional design (Amir, Freshman & Foa, 2000;

Storch et al., 2007; Storch et al., 2010).

The fourth study, by Merlo et al. (2009) was a treatment outcome-based study that

aimed to investigate whether the amount of accommodation provided by the parents of

children with OCD was associated with treatment outcome and, specifically, whether a

decrease in accommodation was associated with an improved treatment outcome. Participants

(N = 57) were given 14 weeks of family-based Cognitive Behavioural Therapy and were

asked to complete measures, including the Family Accommodation Scale-Parent Report

(FAS-PR; Storch, Merlo & Geffken, 2005) both before and after the treatment. The FAS-PR

was developed from the FAS (Calvocoressi et al., 1995) to include examples and more

specific wording. The authors note that the FAS-PR has moderate convergence and excellent

reliability in a previous study (Fernandez, Storch, Geffen & Murphy, 2006). Merlo et al.

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found that 88% of parents reported at least mild accommodation before treatment.

Accommodation was significantly correlated with parent-rated child impairment and

clinician-rated symptom severity, but not child-rated functional impairment before the

treatment was offered. 80% of the children in the study were considered to respond to the

therapy as their score on the Child Yale-Brown Obsessive Compulsive Scale (CY-BOCS)

reduced to under 16, the level of clinical significance (Goodman et al., 1989), and they had

an average decrease of 35% in their score. After the treatment, 65% of parents reported no

accommodation. The parents of those children who responded to the treatment reported an

average decrease in family accommodation of 12.73 points compared to 5.30 points in the

families where children did not respond to treatment. The magnitude of the change in

accommodation scores was significantly related to parent-rated impairment scores after the

treatment, but not child-rated impairment scores. A limitation of this study which the authors

acknowledge is that, without a control group, it is impossible to say whether any change in

symptoms and accommodation is due to the specific treatment, rather than the effect of being

in any intervention where the family is working together. Another issue with this study,

although not really a limitation, is the fact that the authors used the FAS-PR, which differs

slightly to the FAS as described above. To the author's knowledge, a comparison of results of

levels of accommodation from the FAS and the FAS-PR has not been completed and it is

therefore not possible to determine whether the scales would produce similar results. It

appears that the two scales are very similar, just with a different response format.

Of the three cross-sectional studies investigating the impact of accommodation on the

person with OCD, two focussed on children (Storch et al., 2007; Storch et al., 2010) while

the third recruited both children and adults (Amir, Freshman and Foa, 2000). The papers by

Storch et al. (2007) and Storch et al. (2010) are similar in terms of the method employed.

Both studies recruited children with OCD from university-based OCD clinics and their

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diagnoses were confirmed by a licensed and experienced psychologist or psychiatrist. A

number of clinician-administered and self-report measures were then completed by both the

children and their parents. Both studies included the FAS, although one used it as a self-

report measure (Storch et al., 2007). Storch et al. (2007) assessed the relationships between

family accommodation, symptom severity, functional impairment and internalizing and

externalizing behavioural problems. They found that rates of accommodation were high with

the most common types being providing reassurance and participating in rituals. They also

found that accommodation correlated with measures of symptom severity and behaviour

ratings, producing moderate to large effect sizes. Family accommodation mediated the

relationship between OCD symptom severity and parent-rated child functional impairment,

accounting for 53% of the variance. Storch et al. (2010) looked at possible predictors of

functional impairment aside from symptom severity. This study found that levels of family

accommodation were predictive of functional impairment beyond symptom severity and

emotional functioning. In the school environment, family accommodation was the only

significant predictor of parent-rated functional impairment. In the home environment, both

family accommodation and insight into symptoms were significant predictors of parent-rated

functional impairment. In social settings, family accommodation, insight into symptoms and

symptoms of depression were all significant predictors of parent-rated functional impairment.

However, for child-rated functional impairment, family accommodation was predictive in the

school environment only. These analyses accounted for 11-21% of the variance.

Amir, Freshman and Foa (2000) assessed the relationship between family

accommodation and symptom severity, as well as the impact of the family's reaction to the

illness on symptom severity, depression ratings and treatment outcomes. This study recruited

both children and adults (age range 11-59). A number of measures were completed by both

the person with OCD and their relatives, including a scale the authors called the Family

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Accommodation Questionnaire and referenced Calvocoressi et al. (1995). The authors are not

clear as to whether this measure was administered by a clinician or if they used it as a self-

report measure. Amir et al. found that relatives' rejection of the patient was related to total

symptom severity and level of compulsions. When family members had to modify their

routine as a result of the patient's OCD, they reported more depression. They also

experienced increased anxiety and depression when they did not accommodate the patient.

The effect sizes for these correlations range from .26-.43, indicating small to moderate effect

sizes. There are a number of key limitations to this study however. Firstly, patients who

achieved a score of 8 or higher on the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS)

were included. The level of clinical significance on this scale is 16, which is the cut-off point

that other studies in this area use. The findings are therefore not comparable to studies that

utilise the higher cut-off point as less accommodation may occur in less symptomatic

samples. This is because the participants in this study may require and request less

accommodation and may therefore receive less which would make the results appear that less

accommodation is being provided to people with OCD than is actually occurring. Also, the

authors do not mention whether they used the child version of this scale for the children in

their sample. Secondly, the participants used in this study were both adults and children. This

means that the results cannot be directly compared with samples that utilise children or adults

only as children will likely spend more time with their caregivers. This issue is not addressed,

and amount of time spent with the patient is not assessed. Finally, the use of the term 'Family

Accommodation Questionnaire' is confusing as the authors are not clear about what this

measure is.

Considered together, the studies in this group have homogenous samples in terms of

socio-demographic characteristics. This appears to be a common issue across accommodation

research although it may reflect a bias towards those who are likely to seek help and be

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referred to intervention services. In terms of the FAS, Storch et al. (2007) have used it as a

self-report measure. Although it is widely used as a self-report measure, the psychometric

properties of this have not been systematically studied. Storch et al. (2010) had clinicians

administer the FAS, and as mentioned above, Amir, Freshman and Foa (2000) are unclear on

the issue. Merlo et al. (2009) used the parent report version of the FAS. It seems somewhat

unhelpful for studies to use different measures which are likely to be very similar, but

methodological considerations and constraints will likely influence which scale needs to be

used to a certain extent. For example, it may not be practical for clinicians to administer the

FAS in a study where families are completing the measures via post, due to geographical

limitations. The diagnosis of participants was attended to carefully by Storch et al. (2007) and

Storch et al. (2010) as described above. It appears that Amir, Freshman and Foa required only

a Y-BOCS score of 8 to include participants, which as described above is a much lower score

than other studies in the area, and they mention no other screening for the diagnosis or

enquiry about comorbid diagnoses. Merlo et al. (2009) included participants who had a

primary diagnosis of OCD, but there is no explanation of where this diagnosis was made or

how it was confirmed. Similarly to previous studies, no causal attributions can be made from

any of these studies due to their design. Future studies which employ a longitudinal

prospective design would be beneficial to establish the direction of any significant

relationship.

Studies that investigate possible predictors of accommodation

Five studies investigated predictors of accommodation. All five utilise a cross-

sectional quantitative designs (Albert et al., 2010; Caporino et al., 2012; Flessner et al., 2011;

Peris et al., 2008; Stewart et al., 2008).

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Albert et al. (2010) and Stewart et al. (2008) both investigated possible predictors of

family accommodation utilising a sample of adults with OCD and their family members.

Albert et al., excluded family members with any history of a mental disorder based on

evidence that there is an association between mental disorders in a relative and the degree of

family accommodation they provide (Peris et al., 2008). However, they did not exclude adults

with OCD based on their own comorbid disorders as 57% had another Axis I disorder and

47% had another Axis II Disorder. This could be significant because the presence of another

comorbid disorder could influence the amount of accommodation relatives provide to the

affected individual. Stewart et al. also included participants who had comorbid disorders,

with 70.9% achieving a Beck Depression Inventory (Beck, Ward, Mendelson, Mock &

Erbaugh, 1961) score indicating Major Depressive Disorder. Stewart et al. did not exclude

family members based on their psychopathology, but did ask patients whether their family

had a history of OCD, which was found to be very common (30.8%). Both studies required

patients and family members to complete a battery of tests. For family members, this

included the FAS, which was clinician-administered by Albert et al. and used as a self-report

measure by Stewart et al. Both studies found that accommodation was common. Albert et al.

found that 47% of family members provided reassurance daily, 43% assisted the patient to

avoid anxiety-provoking situations daily and 35% participated in the patient's rituals daily.

65% reported at least a moderate level of distress associated with this accommodation. The

two variables they found that most strongly correlated with family accommodation were the

patient's score on contamination/washing symptoms and a family history of anxiety disorders

other than OCD. A limitation of this study, which is acknowledged by the authors is that

because comorbidity in the OCD patients was typical, the results may not generalise to a less

severe sample. Also, family history of mental disorders was only assessed through

information provided by the patient. This could have led to misinformation as the patient may

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not have been aware of the entire family history of disorders. Stewart et al. found that 96.9%

of respondents reported at least some accommodating behaviours and 59.1% indicated that

they accommodated the patient's behaviour daily. The most frequent types of accommodation

behaviours were providing reassurance and waiting for the patient to complete their

compulsions. Two predictors of family accommodation were found: the severity of the

patient's OCD symptoms and, similarly to Albert et al., the presence of

cleaning/contamination symptoms. Key limitations of this study include that it is unclear

which family member was completing the FAS. Also, the authors mention that only 74.7%

were living with a first-degree relative, indicating the possibility that some family members

who completed the FAS were not living with the patient. The amount of time spent with the

patient was also not assessed.

Peris et al. (2008), Flessner et al. (2011) and Caporino et al. (2012) all investigated

predictors of family accommodation in children with OCD by asking children and their

parents to complete a battery of tests, including the FAS. Peris et al. used the FAS-PR

(Storch, Merlo & Geffken, 2005) which was modified from the original FAS (Calvocoressi et

al., 1995). They did not exclude parents based on their psychopathology, and found that 13%

of parents received a score indicating clinical significance on a measure of OCD symptom

severity. Parental OCD scores on this measure were correlated with total accommodation

scores. Accommodation was found to be common, with 56% providing reassurance daily and

46% participating in rituals daily. 43% of parents reported that they experienced at least

moderate distress when accommodating their child's behaviours. The severity of the child's

symptoms was not associated with total accommodation scores, but parental involvement in

the child's rituals was associated with more severe symptoms in the child. The authors of this

study note that total accommodation was not related to child-rated symptom severity. The

authors note that replication is needed in order to assess this finding.

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Flessner et al., (2011) found that 99% of their respondents reported engaging in at

least one accommodating behaviour and 77% reported accommodating their child's behaviour

daily. The most common types of accommodation were reassuring the child, participating in

rituals and helping the child to avoid anxiety-provoking situations. They also found that the

severity of the child's compulsions, the presence of washing symptoms and oppositional

behaviour, and parental anxiety scores all combined to predict accommodation. This model

accounted for 23% of the variance compared to 43% accounted for in the model by Peris et

al. (2008). The measure of the child's OCD symptom dimensions was a child-report

measurement. In previous studies (Merlo et al., 2009; Peris et al., 2008; Storch et al., 2010),

different results have been found from child-report symptom severity and parent-report

symptom severity measures and previous research has also shown that children do tend to

report less impairment than their parents (Renshaw, Steketee & Chambless, 2005) although

the mechanisms behind this finding are not yet completely understood. Therefore, it would

have been useful to include both child and parent report measures of symptom severity in this

study.

In their study, Caporino et al., (2012) used a measure based on the FAS (Calvocoressi,

et al., 1995) but consisting of only nine of the usual 13 items. Items were selected that

measured family member's involvement in the child's OCD. Caporino et al. did not include

the remaining four items in the original scale that assess the degree of distress experienced by

both the family member and the person with OCD as a result of accommodating or deciding

not to accommodate. Caporino et al. found that the relationship between the child's symptom

severity and parent-rated functional impairment was mediated by family accommodation.

The relationship between family accommodation and parental anxiety was mediated by child

internalizing problems. Internalizing problems are those which are focussed inwardly such as

depression or social withdrawal. Consideration of future consequences and parental empathy

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interacted to predict family accommodation, such that where parents empathised more

strongly with their child and considered the future consequences of their own behaviour,

more family accommodation occurred. Child externalizing problems were also significantly

associated with family accommodation. A limitation of this study, which is acknowledged by

the authors, is the use of parents as central informants. As discussed with the Flessner et al.

(2001) study, it may be useful to have multiple raters to ensure that the relationships found

are not due to same-source bias. However, resource and sample constraints might limit the

use of multiple informants.

This group of studies have a number of general limitations similar to those typical of

the papers reviewed earlier. Firstly, the FAS has been used in a number of different ways,

sometimes as a clinician-administered instrument (e.g. Albert et al., 2010) and at others as a

self-report tool (e.g. Stewart et al., 2008). Both Peris et al. (2008) and Flessner et al. (2011)

used the FAS-PR (Storch, Merlo & Geffken, 2005). This version has been used in several

studies but does not appear to have been systematically and empirically tested. Caporino et al.

(2012) have done something different to all of the previous studies discussed and used only

part of the FAS. Although they do point out that the items they used have demonstrated good

internal consistency, using only these nine items as a scale has not been investigated fully. It

is possible that comparisons across studies may be hindered by using different versions of the

scale. However, similar rates of accommodation have been found across studies using

different version of the scale. Secondly, all of the studies in this group have used

demographically homogenous samples consisting mainly of white participants who tended to

have substantial incomes. Most of the papers indicate this as a limitation, but this seems to be

an issue across accommodation research. Thirdly, the diagnosis of OCD in the participants

has been a limitation in some of these studies. Stewart et al. ensured that their participants'

diagnosis was based on two interviews with a psychiatrist and a behavioural therapist who

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both had expertise in OCD as well as a number of psychometric measures. Caporino et al.

had diagnoses confirmed by a clinical psychologist with expert knowledge of OCD based on

a clinical interview. However, this was only done for 72% of the participants. For the

remaining 28%, the diagnosis was confirmed by the patient's case notes being read by the

first author of the study. Peris et al. simply state that their participants had a primary

diagnosis of OCD according to the DSM-IV, but do not state by whom this diagnosis was

made. Similarly, Albert et al. simply stated that their participants had a primary diagnosis of

OCD and a Y-BOCS score of 16 or more. Flessner et al. stated that their participants'

diagnosis was based jointly on scores from the CY-BOCS and the Anxiety Disorders

Interview Schedule for Children. Confidence in the OCD diagnosis is a factor which varies

between studies within the literature. Finally, the issue of being able to infer causal

attributions has been raised again by this group of papers. It appears that due to the design of

all of these studies, causal attributions cannot be inferred from any of them. While mediation

analysis can give the reader the impression of causal relationships, any causal sequence

cannot be assessed by the regression analysis used. Although this is a widely used analytic

strategy, longitudinal studies are really required to demonstrate temporal sequences between

symptoms, accommodation and family distress.

The issue of comorbid diagnoses of both family members and the patient themselves

has been brought into question more with this group of papers than the previous two groups.

This is possibly because this section is about predictors of accommodation, and comorbid

diagnoses could be very relevant for this. Indeed, it has been found by several of the studies

in this section (Albert et al., 2010; Caporino et al., 2012; Flessner et al., 2011; Peris et al.,

2008) that family member's psychopathology as well as general family history can have an

impact upon the frequency of their tendency to accommodate. This suggests that it would be

useful for future studies to consider these factors when selecting/describing their sample.

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However, as no study to date to the author's knowledge has compared accommodation in

families based on psychopathology, the extent of the impact is not yet known. In terms of

comorbid diagnoses in the person with OCD, all of the studies included participants with

some comorbid diagnoses. This is quite possibly a matter of practicality: it appears that

individuals with OCD are very likely to have some comorbid disorders, particularly

depression (Stewart et al. 2008) and therefore it could be difficult to find participants with

only OCD. Peris et al. (2008) and Flessner et al. (2011) excluded participants if they had

particular comorbid diagnoses including psychosis and pervasive developmental disorder, but

did not exclude all patients with a comorbid disorder.

Discussion

In summary, this review has analysed three groups of studies investigating

accommodation in OCD. These groups were based on studies investigating the impact of

accommodation on the family, the impact of accommodation on the person with OCD, and

studies that aim to identify possible predictors of accommodation.

Accommodation was found to be very common, with 88-99% of family members in

this sample of studies indicating that they provided some accommodation. The most common

forms of accommodation were providing reassurance to the patient, participating in rituals or

watching the patient complete rituals, and assisting the patient to avoid anxiety-provoking

situations. Accommodation was found to be very disrupting to the family and depression was

reported by family members when they had to modify their routine to accommodate the

patient. A tension was discovered within families when trying to decide whether or not to

accommodate: some families reported expecting anger, verbal abuse and even physical

violence from the patient if they did not accommodate, but they also knew that

accommodation would not help the family member overcome OCD. It was found that

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accommodation is correlated with a number of indices of distress in family members across

the studies reviewed.

The results from studies within this area indicate that the impact of accommodation

on the person may be different from the perspective of parents or clinicians and the patient

themselves. This finding may suggest that patient and carer reports of symptoms and

impairment do not always correspond. It is possible that carer-viewed patient severity is

influenced by the extent to which carers perceive they themselves need to accommodate the

person. It could be suggested that the carer's own psychopathology could play a role here.

A number of possible predictors of accommodation were found within the studies

reviewed. Some, but not all studies found that the severity of OCD symptoms was related to

accommodation. The level of washing or contamination type symptoms was also associated

with accommodation in a number of different studies. This finding could be emerging

because washing and contamination type symptoms tend to be more observable to others and

more likely to occur in the family home so may therefore be more likely to be

accommodated. Parental OCD and a family or parental history of anxiety disorders were

associated with accommodation, as well as parental empathy. Finally, oppositional behaviour

and child externalizing problems were associated with accommodation.

Taken together, these results indicate that while there may be short-term benefits to

providing accommodation to a patient with OCD, there are many longer-term draw backs.

Providing accommodation is disruptive and distressing to the family, does not help the person

with OCD to overcome their difficulties and even serves as a barrier to therapy in that it is

directly at odds with exposure-based treatments that are recommended for OCD. Therefore, it

is beneficial for everybody involved to reduce accommodation as far as possible.

Limitations of research in this area

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There are a number of limitations that appear to be relevant to the majority of research

in this area. Homogenous samples, differing use of the FAS, a lack of studies that allow

causal inferences to be made and variability in diagnostic status of participants are issues that

have been discussed above. There are also a number of other limitations. Firstly, the amount

of time the family members spend with the patient with OCD is not assessed in any of these

studies. While it can be assumed that children who are living with their parents will be

spending a lot of time together, differing circumstances of the parents could impact upon this.

For example if one parent is working and one is staying at home with the child, there will be

a large difference in the amount of time they spend with the child. However, for adults with

OCD who may not even be living with the family member completing measures of

accommodation, it is even more important to assess the amount of time they spend together

as this could vary widely. Secondly, the role of comorbid diagnoses is an area that requires

attention. Within this sample of studies, it appears common for patients with OCD to have

comorbid diagnoses of a number of different disorders including depression. A comorbid

disorder may well be an important factor because it could make the parents or family

members even more anxious about and attentive to the patient than if they had only one

disorder. This could mean that they are even more likely to accommodate to their behaviours,

as they could be used to helping them with other issues as well. However, it appears that it

could be very difficult to find participants who have only a diagnosis of OCD and no other

disorders. At the very least, information about comorbid diagnoses should be gathered when

possible to ensure that samples can be described on this dimension. Similarly for family

psychopathology, it may be impractical to exclude a participant who has any family member

with any history of mental illness, so perhaps it would be prudent simply to investigate the

family history and be aware of any potential implications of it. A final important issue raised

from these studies is that it is useful to measure variables from more than one perspective.

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For example, where both patient and family member have completed measures of symptom

severity, differing results have been found, so it is important to measure from both

perspectives.

In summary, literature investigating accommodation of both children and adults with

OCD has been reviewed. Given that accommodation might impact on amelioration of OCD

beliefs and symptoms either by elevating family distress and/or undermining exposure-based

therapies, it is important to build an evidence base on the occurrence and impact of

accommodation. A number of the limitations found across this research area indicate possible

directions for future research. Firstly, a psychometric study of a self-report version of the

FAS is warranted in order that it may be compared with the clinician administered version

given that self-report tools may be more pragmatic in certain contexts. Secondly, a study

investigating the impact of the amount of time carers spend with the affected individual on

amount of accommodation could be beneficial. Possibly hypotheses on such a study may

appear very clear, (e.g. that more time spent together would lead to more accommodation)

but it would be helpful to investigate these more thoroughly. Thirdly, it may be useful for

future studies to consider accommodation in the context of the different subtypes of OCD

rather than investigating accommodation just in participants with OCD in general. Finally,

most family members included within this sample of studies were parents, particularly those

studies investigating children with OCD. In studies that investigated adults with OCD,

spouses, children and some siblings were also included. An important research question for

future development is the role siblings play in accommodation. The sibling relationship is

unique and often longer lasting than many other relationships in life (Stewart, Verbrugge &

Beilfuss, 1998). As children, siblings are likely to spend a lot of time together and have an

impact upon each other's development (Barrett, Rasmussen & Healy, 2000). It therefore

seems possible both that siblings may be affected by parental accommodation, but also may

143

accommodate their sibling themselves. It would be useful for future research to investigate

the amount of accommodation being provided by siblings and the impact this may have on

both the person with OCD and their sibling. This is perhaps especially important given the

potential for accommodation between siblings to occur at a sensitive point in development,

and the amount of distress that has been found to be associated with accommodation.

144

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150

Appendix

Table 1

Details of database searches conducted

Date Source Words entered No. hits

Dates searched

No. unique references found

11.11.12 PsycInfo accomm* ANDOCD

67 1995-2012 65

22.11.12 PsycInfo Family accomm*ANDOCD

50 95-2012 48. 0 new references

22.11.12 PsycInfo Family accomm* AND obsessive compulsive disorder


22.11.12 Medline via EBSCO

Family accomm* ANDobsessive compulsive disorder

36 95-2012 36. 1 new reference

22.11.12 Web of Knowledge

Family accomm* ANDObsessive compulsive disorder.Both terms searched under topic.

75 95-2012 75. 26 new references.Only 2 of these were relevant

25.11.12 PBSC Family accomm* ANDobsessive compulsive disorder


25.11.12 PsycArticles

Family accomm* ANDobsessive compulsive disorder


25.11.12 PILOTS Family accomm* ANDobsessive compulsive disorder.

0 0

25.11.12 PILOTS Family accomm* ANDOCD

0 0

25.11.12 ASSIA Family accomm* ANDobsessive compulsive disorder

21 1995-2012 21. 0 new references

25.11.12 Cochrane Library

Family accomm* AND obsessive compulsive disorder

14 2006-2012 14. 14 new referencesNone were relevant.

25.11.12 Counseling and Psychotherapy Transcripts

Obsessive compulsive disorder, then searched within for accommodation

7 1995-2002 7. 7 new referencesNone were relevant.

151

25.11.12 PEPWEb (family accommodation) (Obsessive compulsive disorder)

27 1949-2011 27.27 new referencesNone were relevant

25.11.12 SciVerse Obsessive compulsive disorder, then family accommodation within the results.

40 2003-2012 40. 2 new references1 considered relevant

Table 2

Categorisation of relevant papers

Type/focus of paper No. of referencesKey papers 14Treatment of OCD 11Review papers 7Developing scales to measure accommodation

5

Papers whose focus is not accommodation 4Case studies 1

152

Clinical Experience

153

Overview of Clinical Experience

My first placement on the PsychD course was within a Community Mental Health

Team (CMHT) and was split with an Early Intervention in Psychosis Service (EIS) that was

based in the same building. Within the CMHT part of the placement, I gained experience of

conducting longer-term therapy, largely focussed on depression, anxiety and low self-esteem.

The therapeutic model for this work was CBT. Within the EIS part of the placement, I

conducted individual therapy with some clients and co-facilitated an ACT group. I also

completed neuropsychological assessments as part of this placement. One of the most

important things I learnt from this placement was the value of sensitive but direct language

and getting alongside the experiences of the client in a genuine and honest way.

My second placement was at a CAMHS service. This placement was split between

general CAMHS and the specialist LD team. My supervisors on this placement had two very

different styles and this was interesting to learn from. The work focused on phobias, social

anxiety and depression and was largely in a CBT framework although I also conducted some

narrative work. I conducted a research project on this placement about the caseload of tier

two workers within schools. The most important things I learnt from this placement were the

value of humour and the vital role of the therapeutic relationship.

My third placement was split between two Memory Assessment Services. I do not

feel I reached my full potential on this placement because one of my supervisors changed

during the placement due to personal reasons and it took a while to find another. As part of

this placement, I conducted a Memory Management Group for which I made or adapted a lot

of the materials, conducted dementia assessments and completed some short-term individual

therapy which had a behavioural basis. The most important things I learnt from this

placement were the impact of such a diagnosis on loved ones and on the self-esteem of the

154

person diagnosed. In terms of my clinical practise, I learnt about the balance between being

in the position of ‘expert’ and the importance of never being condescending to clients.

My fourth placement was at an adolescent inpatient unit. This provided me with a

more intense working environment than I had had previously during training. At first the

severity of the young people’s difficulties and the very high levels of risk were overwhelming

for me and I found it a little hard to cope with. However, as the placement went on I found

that I really like the environment in terms of working within a team which is always

available, and being able to interact with the young people in more situations than just the

therapy room. As part of this placement, I conducted a mindfulness group which was a

slightly chaotic and unpredictable group as anyone was allowed to drop in and out. I found

this placement extremely rewarding and found myself sad to leave. The most important

things I learnt from this placement were keeping a cool head when confronted with risk and

the importance of effective communication within a team.

My final placement was split between two community mental health and learning

disability teams. I gained a wide range of experience from this placement, including working

with staff teams, providing consultation, completing couples therapy, working with complex

networks and teaching medical students. I found that I enjoyed the variety of this work and

was able to work on my confidence as an independent practitioner in preparation for

qualifying. My supervisors were very supportive of this and helped me to be as autonomous

as possible. From this I developed further confidence in my clinical skills and judgments and

began to experience the feeling of being a qualified clinical psychologist. As such the most

important things I learnt from this placement were to have confidence in my abilities but to

still think things through carefully before making decisions.

155

Table of Assessments

Year I Assessments

PROGRAMME COMPONENT

TITLE OF ASSIGNMENT

Fundamentals of Theory and Practice in Clinical Psychology (FTPCP)

Short report of WAIS-III data and practice administration

Practice case report Assessment and Formulation for a Man in his Late Forties with an Autism Spectrum Disorder and Social Anxiety Issues

Problem Based Learning – Reflective Account

Reflective Account

Research – Literature Review

Accommodation of the symptoms of Obsessive Compulsive Disorder

Adult – case report Cognitive Behavioural Therapy with a young woman with low self-esteem and a diagnosis of Bipolar Disorder

Adult – case report Neuropsychological assessment with a young lady with suspected generalised Learning Disabilities and a first episode of psychosis

Research – Qualitative Research Project

“What is the experience of low-intensity IAPT workers transitioning to clinical psychology training?”

Research – Major Research Project Proposal

The occurrence and correlates of accommodation in siblings of people with obsessions and compulsions.

Year II Assessments

PROGRAMME COMPONENT

TITLE OF ASSESSMENT

Research Research Methods and Statistics test

Professional Issues Essay Assignment Title: Critically explore the statement that clinical psychology should “move away from psychiatric diagnoses…, which have significant conceptual and empirical limitations, and develop alternative approaches which recognise the centrality of the complex range of life experiences..” (Position Statement on the Classification of Behaviour and experience in Relation to Functional Psychiatric Diagnoses: Time for a Paradigm Shift, BPS, 2013)

156

Problem Based Learning – Reflective Account

Problem Based Learning Reflective Account II

People with Learning Disabilities/Child and Family/Older People – Case Report

Cognitive Behavioural Therapy with a teenage girl with bulimia, low mood and anxiety

Personal and Professional Learning Discussion Groups – Process Account

Personal and Professional Learning Discussion Group Process Account

People with Learning Disabilities/Child and Family/Older People – Oral Presentation of Clinical Activity

Memory Management Group with older adults who have a diagnosis of dementia

Year III Assessments

PROGRAMME COMPONENT

ASSESSMENT TITLE

Research - SRRP The working practices of two CAMHS tier two workers providing clinical services to two schools for children with moderate and severe learning disabilities

Research – MRP Portfolio Lay constructions of recovery: A Q methodological study

Personal and Professional Learning – Final Reflective Account

On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training

Child and Family/People with Learning Disabilities/ Older People/Specialist – Case Report

An extended assessment of a lady in her 40s with diagnoses of a learning disability and bipolar disorder.

157

Publication resulting from clinical training

158

159

160

161

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