Warwick Holistic Health Questionnaire (WHHQ) Nicola Brough – MPhil, RCST, Warwick University, Body worker and energetic practitioner Balens 2017 CPD Event
Transcript
Warwick Holistic Health Questionnaire (WHHQ)
Nicola Brough – MPhil, RCST, Warwick University, Body worker and energetic
practitioner
Balens 2017 CPD Event
The Warwick Holistic Health Questionnaire:Developing and evaluating a patient reported outcome
measure for Craniosacral Therapy.
By Nicola Brough (MPhil, RCST).
About meBackground• Degree in business; worked in a
management training company involved in psychometric profiling for training and recruitment in AUS.
• Interested in CAM during burnout and emotional breakdown (late 90’s)
• Started CAM training in 2001 in AUS• CST Training in 2004-2006 in UK• In private practice in Staffordshire• Use various modalities of work
depending on needs of client, yet most of practice is orientated around CST.
• Interested in research since 2009• Undertaken 2 studies so far …
3
www.nicolabrough.com
OverviewCraniosacral Therapy
• CST and The Craniosacral Therapy Association
• Explored outcomes of CST with CST users
The current situation
• Lack of suitable Patient Reported Outcome (PRO) measures for CAM
• PRO assessment is in its infancy in CST and in CAM more generally
Future prospects
• Enable more robust studies of the effectiveness of CST to be undertaken and in the future may influence provision of CST in health services
What is CST?
• CST has developed from clinical experience within the field of osteopathy.
• CST is a ‘hands on’ therapy which is thought to assist the body's natural capacity to self-repair.
• Practitioners rely on their perceptions, not limited to a specific sensory organ but encompass their entire being.
• Being able to stay ‘present’ with clients is an important catalyst for the mechanisms of action.
• CST is not widely practised in the NHS.
• There is not yet a method to measure the phenomenon of CST.
Presenter
Presentation Notes
CST is based on practitioner capacity to sense and influence the vibrational patterns in the body. Cranio rhythmic impulse – low frequency waves in the body. Experiment: Grasp the index finger of one hand with the other, and notice how the finger swells and shrinks in CRI rhythm. This oscillation can be observed clearly. Tension patterns created by traumas arise in the energetic body, these are very subtle phenomena and we are trained to be able to sense them. CST practitioners orientate to health and wait for a change in the pattern.
What happens during a CST session?
• If you were to have a session of CST you would be fully clothed and usually lie on a treatment table.
• The practitioner would make light contact on the body, see Figure 1.
• The head and the sacrum are the two main contact points allowing direct contact with the craniosacral system.
• Sessions can take between 40 minutes to one hour.
Figure.1. Occipital hold
Presenter
Presentation Notes
Practitioner – find a quiet still place within self, stay heart felt and present. Rest and Relaxation – CST induces a deep states of stillness, like a meditative state (alpha brain activity) when mind-body can rest and rejuvenate thus stimulating body’s own healing mechanisms. Placebo – we don’t have the resources to research the individual variables that effect each patient (RCT’s not suitable in this area of inquiry qualitative studies also pragmatic trials which are being used more). I always use a disclaimer when talking to people about CAM and sees the advantages of working alongside G.P,’s or other Healthcare Professionals to emphasis the importance of seeking medical advice from a qualified medical practitioner in the first instance if you suspect you have a serious medical condition. Healing doesn’t just happen on physical level as per findings of my study.
Craniosacral Therapy Association (CSTA)
• CST is not currently regulated, but practitioners can voluntarily join associations that provide professional foundations for the practice of CST.
• CSTA – established in 1989, has a membership of approximately 600,the number of non-member practitioners is unknown.
• Members undertake 2 year training from an accredited school, adhere to the CSTA code of ethics, participate in regular continuing professional development and hold professional indemnity insurance(www.craniosacral.co.uk).
There is limited published literature and gaps remain in understanding and knowledge surrounding CST. Green et al – Rated 7 studies which were reported as the lowest grade evidence using the Canadian task force on Preventative health care ranking system. Study designs included retrospective case series, before and after studies and case reports. Authors suggested that research methods that could conclusively evaluate effectiveness of CST had not yet been applied. Jakel and von Hauenschild – used Down and Black scoring system to critically evaluate included 7 different studies carried out since 2000, comprising of RCT’s and observational studies. Conditions included fibromyalgia, multiple sclerosis, children with a variety of disabilities, adults with dementia Studies reported outcomes including pain reduction, improvement of QOL and general wellbeing, reduction of medication in some patients, significant improvements in the SF-36 dimensions (physical function, physical role, body pain, general health, vitality and social function) Highlighted an improvement in quality of evidence in terms of methodology, and that the effectiveness of CST was now of moderate quality. Ernst Rated 6 RCT’s of CST for adults and children for any human condition. Used Jadad score system to determine trial quality. All suggested positive effects, although all were associated with a high risk of bias and low quality studies. Further research is needed.
Exploratory work to understand users’ perspectives
• Changes were identified in three aspects:• mind• body• spirit
• Changes in health status were reported as:• recovery• reduction of symptoms• reassessment of problems
A qualitative study (Brough et al., 2015) explored clients’ experiences and categorised the outcomes they reported.
Presenter
Presentation Notes
This was a qualitative study, using constant comparative methods informed by grounded theory. Semi-structured interviews explored clients’ experiences. Inductive thematic analysis resulted in themes, concepts and vignettes. Sample:29 participants (27.5% male and 72.5% female). Each participant was over the age of 16 years, had received six sessions or more of CST within a 12 month period Reduction of anxiety and panic (P.002), Recovery from depression (P.027), Changes in mental attitude (P.023), Gained self confidence (P.029) Awareness of mind body links (P.015 & 002), New emotional awareness (P.002), Body: Pain relief from sciatica and back (P. 009), Improvements in mobility (P.008), Reduces sleep medication for a Couple of nights (P.004) Relief from tension in the body (P.003), Improved lung capacity, stable easy breathing (P.020), Settles stomach after chemotherapy (P.012) Spirituality: Sense of well-being (P.005), More present, more open hearted (P.010), Felt a lightness of spirit (P.027), Feeling connected in relationships (P.002),
New levels of awareness in six domains
Medium of awareness is fundamental to the perceived impact of CST on health.
self concept
psycho/emotional
understandingmind-body-spirit
links
coping strategies
self care
interpersonal relationships
new levels of awareness
Presenter
Presentation Notes
Changes happened over a course of CST sessions and was observed usually in more than one domain. Psycho/emotional – psychology, cognition and accessing emotions, understanding them and acceptance of them. Coping strategies – new understanding/awareness about symptoms or conditions, coping strategies can influence day to day activities and how they manage themselves. Self care – talking responsibility for own health, allowing a nurturing experience, reflective ‘down time’ and resourcing themselves, asking for help, doing less or making a lifestyle change. ‘intention’ quality of purposefulness that is borne out of awareness - internal shift, momentum for change. Paterson (2006) coined the term Self concept - sense of wholeness and self confidence, being balanced and centred.
CST process and mechanismsTwo aspects of importance were evident in the data:
The therapeutic relationship • Feeling cared for
• Developing a sense of partnership with practitioner, creating a balance of power
• Attention given to the ambiance of the environment in creating a safe space
• The importance of their practitioners model of health, lack of expectation in terms of outcomes to treatment
Altered sensory perception• Changes in perceptual awareness
• Of seeing colours
• Imagery
• New sensations in the body
Review of existing outcome measures
• Systematic review of the literature to identify candidate
measures to assess changes in people having CST.
• Identified 3 candidate measures:
– Harry Edwards Healing Impact Questionnaire2 (HEHIQ)
• None of these measures capture all the changes clients report
as a result of CST
• Need to develop a CST specific measure.12
Presenter
Presentation Notes
Previous qualitative work had highlighted outcomes that were important to patients. Three questionnaires were identified as capturing some of these outcomes but none had the provision for all outcomes identified. HEHIQ – Designed for use with reiki and spiritual healing the provision for reporting on physical symptoms is limited. SF-12v2 – failed to have provision for outcomes of a spiritual nature, sleep, self concept or the participants ability to adapt to their situation or to address their ability to cope. WEMWBS – does not capture the physical outcomes.
Aim of PhD
• To design and evaluate a Patient Reported Outcome Measure (PROM) to assess change in those having CST.
13
Methods
• International guidelines1 for the development of a new PROM have been followed.– Create conceptual framework– Generate item long list– Refine longlist to create provisional measure– Test provisional measure
14
Presenter
Presentation Notes
FDA guidance has been followed and both CST practitioners and CST users have helped inform many aspects of the questionnaires development.
Evaluating the conceptual framework
• Focus group participants: – Practitioners (two groups: 4 and 3
• Discussion in the focus groups included:– Content of conceptual framework – Relationship between domains and
subdomains– Language used– Comprehension– Design and layout
15
Presenter
Presentation Notes
The current version reports the effects of CST and all need to be included in the questionnaire. In a truly holistic model there is no order or hierarchy in the way in which health develops or declines and outcomes are manifest. And all are correlated with there being potential for change in any direction. Participants like the complexity of the framework. Practitioners recommended language used be kept simple using words heard in practice. Self care and taking responsibility for one’s self was seen as important to users and components were refined to reflect this. Users recommended developing the social wellbeing domain further incorporating intimate relationships and making use of a support network. The role of spirituality in fostering health and wellbeing was debated by practitioners, yet all users in our focus group reported it was important to them. Striving to be ‘present’ was an important process for users and they requested presence have a sub domain to reflect this. As was the therapeutic relationship they had developed with their practitioner. It was decided that this wasn’t an outcome but possibly a mechanism of action and was not included in the C/F. The components linked to everyday life were debated, users wanted a distinction made between doing things they enjoy and an overall sense of life satisfaction with their role in life: Life satisfaction – I’ve been satisfied by my school, work or current role in life Doing things I enjoy – My daily life is full of things that keep me interested
Designing a questionnaireUsing semi-structured interviews,5 verbatim representative statements were identified
Develop an appropriate name:
Use further qualitative methods to construct questionnaire: Consulted with a group of 16 practitioners Semi-structured interviews with 6 patients
Refine questionnaire.
16
Presenter
Presentation Notes
74 verbatim statements were identified Working title of the Warwick Holistic Health Questionnaire was proposed Discussions included: name of the questionnaire – some practitioners wanted CST in title yet appreciated in other populations the working title would suffice. design and layout/instructions choosing items to be included on the questionnaire comprehensibility of each item appropriateness of the response options the recall period, 1, 2 and four weeks were debated a consensus was reached that a 2 week recall period would best reflect practice. Pre testing WHHQ. draft version had 52 statements. cognitive interviews with 3 cst users. To assess content and face validity. Average time of completion was 7.5 minutes.
Study 1: Testing the WHHQ
• Two global questions – Why participants had come for session?– How they rated their wellbeing on day of completion?
• Tested in a sample of CST users – Scale reliability– Identify redundant items – Assess content and structural validity
17
Presenter
Presentation Notes
RESULTS 405 draft WHHQ sent to 55 practitioners. 145 users returned questionnaires. N=142. Data input into SPSS. V.22. Items were assessed for edge effects and item distribution. No repeated missing data. Exploratory Factor Analysis was carried out as a means of data reduction. 33 items removed leaving 19 items on 4 factors.
Challenges when measuring wellbeing
• Wellbeing and health related quality of life is subjective.
• People’s assessment of their health and the way in which they ‘adapt’ to illness changes over time.
• Response shift (Sprangers and Schwartz, 1999) a valuable strategy for coping with chronic disease• shift of internal standards of measurement (recalibration)• shift of respondents’ values (reprioritisation) • reconceptualisation of target construct
• Currently - a bias to be adjusted for during analysis and reporting. ‘Response shift’ may be the AIM of intervention.
What next?
• Analysis in progress– External/convergent validity– Confirmatory factor analysis– Data be analysed in relation to response shift
• Evaluating acceptability of an electronic version of WHHQ
19
References[1] US Department of Health & Human Services (2009) FDA: Patient reported outcome measures: Use in medical product development to support labelling claims. MD: S Department of Health & Human Services Food & Drug Administration.
[2] Bishop, F., Barlow, J. Walker, C. McDermott and G.T. Lewith (2010) “The Development and Validation of an outcome measure for spiritual healing: A mixed method study.” Psychotherapy and Psychosomatics 253: 1-13.
[3] Ware, J. E. Jr.,Kosinski, M., Keller, S. D. (1996) “A 12-Item Short-Form Health Survey: Construction of Scales and Preliminary Tests of Reliability and Validity. “ Medical Care. 34:3. 220-233
[4] Tennant, R., L. Hiller, R. Fishwick, S. Platt, S. Joseph, S. Weich, J. Parkinson, J. Secker and S. Stewart-Brown (2007). “The Warwick-Edinburgh Mental Well-being Scale (WEWBS): development and UK validation.” Health and Quality of Life Outcomes. 5 (1).
[5] Brough et al., (2015) “Perspectives on the effects and mechanisms of craniosacral therapy: A qualitative study of users’ views.” EuJIM, Volume 7, Issue 2, Pages 172–183
