The Collaboration Between Formal and Informal Carers in Dutch Long-term Care

7/26/2019 The Collaboration Between Formal and Informal Carers in Dutch Long-term Care

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THE COLLABORATION BETWEENFORMAL AND INFORMAL CARERS

IN DUTCH LONG-TERM CARE

A QUALITATIVE STUDY EXPLORING THE RELATIONSHIP BETWEEN INFORMAL CARERS

AND HEALTH CARE PROFESSIONALS

MASTER THESIS

14 JUNE 2016

ERASMUS UNIVERSITY ROTTERDAM

INSTITUTE OF HEALTH POLICY & MANAGEMENT

MASTER HEALTH CARE MANAGEMENT (HCM)

STUDENT NAME: WOUTER MEIJER

STUDENT NUMBER: 357594

SUPERVISOR: PROF. DR. KIM PUTTERS

CO-READER: DRS. B.M. VAN INEVELD

EMAIL ADDRESS: [email protected]


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Preface

The document in front of you is the master thesis which I have been working on during a

significant part of this academic year. This has been written to fulfil the graduation

requirements of the Master in Health Care Management at the Institute of Health Policy &Management (iBMG) and is also the concluding piece of my master program. I was engaged

in researching and writing this thesis from November 2015 to June 2016.

The research was undertaken at the request of The Netherlands Institute for Social Research

(SCP), where this subject needed further researched in order to expand the already existing

knowledge about the relationship between health care professionals and informal carers

within Dutch long-term care. The research was challenging, but conducting extensive

investigation allowed me to answer the main research question.

I would like to thank my supervisor Kim Putters for his excellent guidance and support during

this process. Kim was always willing to answer my questions without delay and gave me

constructive feedback. I could not have wished for a better supervisor. I also would like to

thank my co-reader Martin van Ineveld for taking his time to read my thesis. Martin gave me

constructive feedback that allowed me think outside of the box with regard to the theoretical

framework. I would also like to thank both health care organizations for their cooperation:

Argos Zorggroep and Eykenburg. Subsequently, I wish to thank all of the respondents,

without whose cooperation I would not have been able to conduct this research.

I would like to thank my colleagues at the public health department and the general

practitionersoffice for their understanding during the time I was working on my master thesis

and moreover I would thank Fabian, my parents, and my sister for their lovely support.

I hope you enjoy reading my master thesis.

Wouter Meijer

Rotterdam, 14 June 2016.


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Summary

Background: The collaboration between healthcare professionals and informal cares is seen

as an important part of care processes in Dutch long-term care within the context in which

society is transforming into a participation society wherein nursing homes have a strongeremphasis on engaging with informal carers than before. This collaboration has the aim to

further coordinate formal and informal care. This study has the purpose to investigate the

collaboration between healthcare professionals and informal carers and to examine their

relationship.

Methods: Qualitative research methods have been used to compare two nursing homes in

order to identify potential differences between them regarding the collaboration between

healthcare professionals and informal carers. The reason for this was to gain insight in the

differences between two organizations of different scale. In order to collect the data 13 semi-

structured interviews were conducted within the two cases that provide long-term care to

residential clients in the Netherlands. A conceptual model was constructed based on the actor-

network theory, roles of informal carers and different typologies of informal carer relationships.

Results: In both nursing homes primary nurses are responsible for the coordination with

informal carers. At Argos Zorggroep the relationship can be considered as conventional or

competitive, whereas in contrast at Eykenburg the relationship can be assessed as

collaborative within the frame of assessing informal carers as co-workers. In both organizations

there existed little focus on the wellbeing of informal carers and they were found to be

intrinsically motivated to fulfil a caring role within care processes of the client and willing to

cross personal boundaries in order to meet the demands of the residential client.

Conclusion: Within the collaboration between healthcare professionals and informal

caregivers motives, organisational context, support, and attitudes of informal carers are

influencing the behaviour within their relationship. The behaviour of healthcare professionals

is also dependent on these same factors, with the notion that earlier working experience of

healthcare professionals also influences the behaviour of healthcare professionals towards

informal carers. The research also found two other factors that influence the relationship: the

reciprocal expectations of the collaborating actors and personal variation in characteristics of

informal carers. Many challenges still lie ahead and future research should focus on the extent

to which personal characteristics, culture and leadership contribute to the reciprocal relations

within the collaboration.


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Samenvatting

Achtergrond: De samenwerking tussen zorgprofessionals en mantelzorgers is in toenemende

mate belangrijk in de Nederlandse langdurige zorg in een maatschappij die zich ontwikkelt in

een participatiesamenleving waarin verpleeghuizen een sterkere nadruk leggen op desamenwerking met mantelzorgers. De samenwerking heeft als doel om formele en informele

zorg beter af te stemmen. Het doel van dit onderzoek is om de samenwerking tussen

zorgprofessionals en mantelzorgers te onderzoeken waarbij inzicht wordt gegeven in de relatie

die zij met elkaar hebben.

Methoden: Kwalitatieve onderzoeksmethoden zijn gebruikt om de twee verpleeghuizen te

vergelijken in een multiple case studie. Dit had als doel het identificeren van mogelijke

verschillen tussen twee instellingen van een verschillende schaalgrootte, waarmee inzicht

werd gegeven in de relatie tussen zorgprofessionals en mantelzorgers. De data is verkregen

door het uitvoeren van 13 semigestructureerde interviews binnen de twee instellingen. Een

conceptueel model is opgesteld op basis van de actor-netwerktheorie, rollen van

mantelzorgers en verschillende typologien van relaties met mantelzorgers.

Resultaten: In beide verpleeghuizen bleken eerste verantwoordelijke verzorgenden

verantwoordelijk te zijn voor de cordinatie met mantelzorgers. In Argos Zorggroep kan de

relatie tussen zorgprofessional en mantelzorger worden omschreven als conventioneel of

competitief, waarbij in tegenstelling tot Eykenburg de relatie tussen hen kan worden

omschreven als samenwerkend binnen een frame waarin mantelzorgers worden gezien als

gelijkwaardige collega. In beide instellingen was er weinig focus op het welzijn van

mantelzorgers. Tevens bleek dat mantelzorgers intrinsiek sterk gemotiveerd zijn om een rol te

vervullen binnen het zorgtraject van de clint. Bovendien overschrijden zij persoonlijke

grenzen om te kunnen voorzien in de zorgvraag van de clint.

Conclusie: In de relatie tussen zorgprofessionals en mantelzorgers spelen motieven, de

context van de organisatie, ondersteuning en houdingen van mantelzorgers een rol welke het

gedrag binnen deze relatie benvloedt. Het gedrag van zorgprofessionals is afhankelijk van

dezelfde factoren, met de vermelding dat eerdere ervaringen van zorgprofessionals ook

invloed kunnen hebben op hun gedrag. Er werden tevens twee andere factoren gedentificeerd

die de relatie tussen hen benvloeden: wederkerige verwachtingen van de samenwerkende

partijen en variatie tussen mantelzorgers met betrekking tot hun persoonlijke eigenschappen.

Toekomstig onderzoek zou zich moeten richten op de mate waarin persoonlijke

eigenschappen van mantelzorgers, culturele factoren en leiderschap kunnen bijdragen aan de

wederkerige relatie binnen de samenwerking tussen zorgprofessionals en mantelzorgers.


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Table of contents

Preface .................................................................................................................................. 1

Summary ............................................................................................................................... 2

Samenvatting ........................................................................................................................ 3

1. Introduction ....................................................................................................................... 7

1.1 Social relevance........................................................................................................... 8

1.2 Scientific relevance ...................................................................................................... 9

1.3 Objective and research questions ...............................................................................10

1.4 Reading guide .............................................................................................................10

2. Theoretical framework ......................................................................................................11

2.1 Actor-network theory ...................................................................................................11

2.2 Motivations and behaviour of actors ............................................................................12

2.3 Three frames of reference to define carers .................................................................13

2.3.1 Carers as resources .............................................................................................13

2.3.2 Carers as co-workers ...........................................................................................14

2.3.3 Carers as co-clients ..............................................................................................14

2.5 Expectations of informal carers ...................................................................................15

2.6 Defining the relationship between professionals and informal carers ..........................15

2.6.1 Conventional relationship .....................................................................................16

2.6.2 Competitive relationship .......................................................................................17

2.6.3 Collaborative relationship .....................................................................................17

2.6.4 Carative relationship .............................................................................................17

2.7 Conceptual model .......................................................................................................18

3. Research design .............................................................................................................20

3.1 Choosing the study design ..........................................................................................20

3.2 Case-selection ............................................................................................................20

3.3 Data collection methods ..............................................................................................21

3.4 Data analysis ..............................................................................................................22

3.5 Quality of research ......................................................................................................22


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3.5.1 Internal validity .....................................................................................................22

3.5.2 External validity ....................................................................................................23

3.5.3 Reliability ..............................................................................................................23

3.5.4 Ethical considerations ...........................................................................................23

4. Results .............................................................................................................................24

4.1 Description of the cases ..............................................................................................24

4.1.1 Argos Zorggroep...................................................................................................24

4.1.2 Eykenburg ............................................................................................................25

4.2 Organisational perspective ..........................................................................................25

4.2.1 Impact budget cuts and transition long-term care .................................................26

4.2.2 New role of informal carers ...................................................................................28

4.2.3 Expectations of informal carers .............................................................................29

4.2.4 Support for informal carers ...................................................................................30

4.2.5 Dependency on informal carers ............................................................................31

4.3 Health care professionals perspective ........................................................................33

4.3.1 Tasks of health care professionals .......................................................................34

4.3.2 Expectations of informal carers .............................................................................34

4.3.3 Overburdening of health care professionals..........................................................35

4.3.4 Support and education of health care professionals .............................................36

4.4 Informal carers perspective ........................................................................................37

4.4.1 Defining informal carers and their motives ............................................................37

4.4.2 Tasks of informal carers .......................................................................................39

4.4.3 Overburdening of informal carers .........................................................................40

4.4.4 Desires of informal careers ...................................................................................41

4.5 Challenges within the collaboration .............................................................................42

4.5.1 Variation between health care professionals .........................................................42

4.5.2 Uniqueness of situational context and expectations of informal carers .................44

4.5.3 Getting used to the collaboration with informal carers ...........................................44

4.5.4 Boundaries professional care and informal care ...................................................45


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4.6 Future of informal carers .............................................................................................47

4.7 Role of technology ......................................................................................................48

5. Discussion ........................................................................................................................49

5.1 Typology of informal carers within the collaboration ....................................................49

5.2 Linkages with actor-network theory .............................................................................50

5.3 Motives of informal carers ...........................................................................................51

5.4 Expectations of informal carers ...................................................................................52

5.5 Advantages and limitations of the study design ...........................................................53

5.6 Future research...........................................................................................................53

6. Conclusion .......................................................................................................................54

6.1 Sub-question 1 ............................................................................................................54

6.2 Sub-question 2 ............................................................................................................55

6.3 Sub-question 3 ............................................................................................................57

6.4 Sub-question 4 ............................................................................................................58

6.5 Main research question ...............................................................................................59

6.6 Recommendations ......................................................................................................60

References ...........................................................................................................................61

Appendices ..........................................................................................................................64

Appendix A: Topic list .......................................................................................................65

Appendix B: Codes ...........................................................................................................70

Appendix C: Overview cases ............................................................................................71

Appendix D: List of abbreviations ......................................................................................73


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1. Introduction

Care for the elderly is a growing concern of the Dutch government because of the increasing

costs of long-term care due to a growing population of older people. One of the largest cost

drivers in long-term care is the expenditures of nursing homes covered by the formerExceptional Medical Expenses Act (AWBZ) (Algemene Rekenkamer 2014). The central

government has to limit expenditures for elderly care in order to keep the Dutch healthcare

system sustainable (Rijksoverheid 2015). Another reason to change health policy and laws is

that the elderly increasingly desire to live in their own homes as long as possible. Therefore,

the Dutch government decided to radically reform long-term care.

Essentially, three major legal changes have been made regarding long-term care in the

Netherlands, including budget cuts. First , a new law concerning long-term care, the Long TermCare Act (WLZ), was introduced in 2015, replacing the Exceptional Medical Expenses Act

(ibid.). Second, the government decided to expand the current Social Support Act (WMO) in

2015 (ibid.), delegating more care tasks to local governments such as municipalities.

Municipalities support the elderly in home care by exploring options and supporting them using

the informal network of the client. Local governments are also now responsible for organizing

the care of long-term ill people, youth and managing the participation of unemployed people.

Third, a small part of long-term care is now delegated to the Health Care Insurance Act (ZVW)

(ibid.). Because of the recent developments, the government expects that less formal care isbeing used and that the elderly are making use of their own networks of informal care to meet

their demands (Rijksoverheid 2015). Due to the recent budget cuts for long-term care, not only

is the use of informal care needed for the elderly living at home, but clients within long-term

care institutions are in need of receiving support from informal carers to fulfil their demands.

In this research informal carers are defined as people that provide care for a chronically ill,

handicapped or care-needing partner, parent or other relative, friend or acquaintance during a

long time wherein the care provision is unpaid (Centrum Mantelzorg 2016). Due to the recent

budget cuts in long-term care the use of informal care is not only needed in elderly living at

home, also clients within long-term care institutions are in need to receive support by informal

carers to fulfil their demands. Coordination between formal care and informal care within long-

term care is therefore an important policy goal of the Dutch government. To achieve this policy

goal, it is important to create coordination between formal and informal carers in a way that

supports the client. Health care professionals play herein a crucial role, because they are an

important or even the most important partner of clients and informal carers within residential

long-term care. The Netherlands Institute for Social Research has already conducted research


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on coordination between healthcare professionals and informal carers (De Boer et al. 2009).

The characteristics of informal care within institutions are different than informal care in

domestic situations (Broese 2010). Within nursing homes informal carers spend fewer hours

caring than within the home situation, because healthcare professionals within the institution

already deliver a significant amount of care for the client, consisting of activities of daily living

like providing meals, helping clients with showering and clothing and providing clients their

medication. However, this does not imply that care given by informal carers is completely

unnecessary. Informal carers often assist with multiple tasks (Broese 2010), and in relation to

informal care given at home a client within a nursing home has more complex needs, because

the client is often at a terminal phase of illness. Moreover, in most cases the informal caregiver

is the partner of the client (Broese 2010). One of the most striking outcomes of research is that

informal carers, even after institutionalisation of the client, endure more or the less same

workload as in the former domestic situation (Broese 2010).

1.1 Social relevance

Over the last decade the collaboration between formal and informal care has been recognized

in Dutch long-term care (Rijksoverheid 2015). Supporting family carers is also a globally

recognized objective in long-term care (Salin et al. 2013). Nevertheless the development of

appropriate services has been a relatively slow process, and the main focus in those services

is still on the needs of the care recipient (Salin et al. 2013). Within the Netherlands there hasbeen a progressive shift of responsibility towards informal carers that has been initiated by the

government. Institutions have subsequently developed new policies to incorporate informal

carers in their care delivery and to support informal networks of care. However, it is uncertain

how nursing homes are performing in coordinating formal and informal care and how the

collaboration between healthcare professionals and informal carers is evaluated. Given that

formal and informal care directly meet each other in the nursing homes, nursing homes should

be paid attention with regard to informal care and the coordination of it (Swinkels & Leeuwen

2002). The participation of informal carers was not often formalized within nursing homes inthe last decades. There are multiple causes for this, one of which can be found within the

professional domain of nurses within nursing homes and their history. Organisations that

provide residential care are often traditional institutions where professional care is delivered

within the nursing home itself behind the front door of the organisation. Informal carers have

therefore felt that they are guests within the organisation rather than participants in care.

Additionally, a lack of communication between healthcare professionals and informal carers is

often seen as a load-increasing factor for the informal caregiver (Whitlach et at. 2001,

Tornatore & Grant 2002, Duncan & Morgan 1994). In comparison to informal care in the home


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situation, healthcare professionals in an institution are more removed from the informal

caregiver (Swinkels & Leeuwen 2002). Recent research shows that 45 percent of informal

carers feel they are too little involved in consultations about the care of the client (De Klerk et

al. 2015). This research also suggests that 37 percent of healthcare institutions ignore the

welfare of informal carers (De Klerk et al. 2015). This is an alarming finding and could be an

indicator that many healthcare institutions in Dutch long-term care do not include informal

carers enough within the care trajectories. Furthermore, the health of informal carers could be

at stake when healthcare institutions ignore and deny the load informal carers endure in

providing informal care to residential clients.

1.2 Scientific relevance

The empirical literature about caregiving for the elderly tends to be fractured along the lines offormal and informal care (Ward-Griffin & McKeever 2000). In the scientific literature less

attention has been given to the relationships between formal an informal carers. Several other

authors have written about the relationship between formal and informal care, but these studies

are mainly focused on caregiving in the home setting and not within healthcare institutions like

nursing homes (Chappell & Blandford 1991, Litwin & Attias-Donfut 2000). Ward-Griffin (2003)

described a framework in which the relationship between formal and informal carers is

evaluated that can be used to define the relationship. There are mainly three propositions in

the literature that describe the relationship between informal carers and formal carers. First,some authors argue that the entry of formal carers into the network induce the replacement of

informal carers within the care delivery (Litwin & Attias-Donfut 2000), but only a few studies

have found empirical confirmation. The second proposition about this relationship is seeing the

relationship between formal care and informal care as complementary (Litwin & Attias-Donfut

2000). Within the literature institutionalisation is seen as the ultimate substitution, however

institutionalisation does not exclude informal care given by informal carers (Swinkels &

Leeuwen 2002). Third, another research shows that family carers attached considerable

importance to their involvement in ensuring the quality of life of their relative and enhancingthe overall sense of community within the care home (Davies & Nolan 2006). To further extend

the literature about the relationship between health care professionals and informal carers this

research will try to investigate this relationship and the collaboration between them.


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1.3 Objective and research questions

This research aims to identify and examine the collaboration between healthcare professionals

and informal carers in nursing homes by trying to define the characteristics that influence this

relationship. This research attempts to provide an analysis of the extent to which the

collaboration between professionals and informal carers leads to good care. Additionally, this

research attempts to distinguish future opportunities and pitfalls in the further development of

this collaboration and provide the organisations included in this research useful advice on how

to support this collaboration.

This leads to the following research question:

What characteristics influence the collaboration between healthcare professionals and

informal carers in nursing homes, and how is this collaboration evaluated?

The answer to this research question is supported by answering the following sub-questions:

Sub-question 1: How do healthcare professionals, clients and informal carers evaluate

their relationships with the other actors within the collaboration?

Sub-question 2: Which characteristics can be found in the collaboration between

professionals and informal carers?Sub-question 3: How do the nursing home management and staff evaluate the role of

informal carers within the organisation?

Sub-question 4: What opportunities and pitfalls can be distinguished in the future

development of the collaboration with informal carers?

1.4 Reading guide

The first chapter provides an introduction to the research object, followed by the main research

question and its sub-questions. Chapter two presents a layout of the theoretical dimensions of

the research, and at the end of the chapter the conceptual model will be introduced. The third

chapter is concerned with the methodology used in this study and will elucidate the chosen

research design. The fourth chapter will present the findings of the research, followed by the

fifth chapter in which the results will be discussed and interpreted by the researcher. The sixth

is dedicated to the conclusion of the research.


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2. Theoretical framework

To further investigate networks between health care professionals and informal carers, we

must conceptualise the relationship between formal carers (healthcare professionals) and

informal carers (family, friends or neighbours) within the long-term care. Given that there is arelationship between healthcare professionals and informal carers within these networks, it is

necessary to understand their behaviour within the collaboration. To understand this

behaviour, the interaction that leads to this collaboration must be addressed.

2.1 Actor-network theory

The actor-network theory can be used to describe the interaction between healthcare

professionals and informal carers that leads to the origin of networks (Latour 2005, Latour

1987, Cresswell et al. 2010). An interaction is an action that occurs as two or more objects

have an effect upon one another. This interaction can be operationalised by communication of

any sort, but also through actions in terms of policy such as stimulating desirable behaviour.

The actor-network theorysmain feature is to focus on inanimate entities and their effects on

social processes (Cresswell et al. 2010:2): An actor is considered as the source of an action

regardless of its status as a human or non-human. Whatthis means is that inanimate things

such as technology or policy concepts can also have agency (Cresswell et al. 2010:2). The

actor-network theory also considers the world as consisting of networks, including humans,

things, ideas and conceptsall of which can be defined as actors in the networks. Tracing

the associations or relationships between different network components or actors is a crucial

activity in the actor-network theory (Cresswell et al. 2010:2). Cresswel et al. (2010:2) describe

how the central idea of the actor-network theory is to investigate and theorize how networks

come into being and to trace what associations exist, how they move, how actors are enrolled

in a network, how parts of a network form a whole and how networks achieve temporary

stability or why some new connections within a network may form unstable networks. The main

goal is to explain how social effects such as power come into being (Cresswell et al. 2010:2).

Another assumption of the actor-network theory is that if any actor is removed from or added

to the network, the functioning of the whole network will be affected (Cresswell et al. 2010:3).

This is possibly the case when networks of informal care change and develop over time,

because the roles of the informal carer and the roles of healthcare professionals are changing.

Within the actor-network theory, translation is key. Translation is needed to influence other

actors within the network or to include new actors. Callon & Latour (1981) define translation as

all the negotiations, intrigues, calculations, acts of persuasion and violence, that is to whichan actor or force takes, or causes to be conferred on itself, authority to speak or act on behalf


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of another actor or force. Through translation, actors are displaced and thus changed in order

to become a part of the actant-network (Callon 1986).

The due process model of Latour (2004) consist of four general rules or stages, describing the

normative program of actor network theory. The first general rule is about complexity, meaning

that we should not simplify the number of potential actors within the actor-network environment.

This rule is also about giving the new candidate some space and legitimacy to introduce itself.

It is important that potential new actants should not be neglected too soon. The second general

rule is about consultation, meaning that there must be multiple viewpoints considered and

consulted, thus preventing networks that are minimalized and short-circuited. The third general

rule is about hierarchy, fitting the actant-network into existing structures. Latour (2004:109)

describes this as a rule:You shall discuss the compatibility of new potential actant-networks

with the existing structures, in such a way as to maintain them all in the same common world

that will give them their legitimate place. More in practice it entails collecting different viewing

points of the different actants. The fourth general rule of Labour (2004:109) described the

institution of agreements: Once the actant-networks have been instituted, you shall no longer

question their legitimate presence at the heart of collective life. The main implication is that

the agreements that are constituted during the phase of hierarchy should be maintained and

fulfilled as much as possible. A task for the researcher in practice is to explore how local

networks are ordered and re-configured over time (Cresswell et al. 2010:3). This approach can

be valuable in this research to appreciate the complexity of informal care in nursing homes.

2.2 Motivations and behaviour of actors

Besides the actor-network theory, which can help investigate and theorize the workings of

networks, a theory of Le Grand (2003) can help unravel the motivations and attitudes of actors

within the network. Motivations and attitudes can lead to behaviours that can influence the

relationship and collaboration between formal carers (professionals) and informal carers. Le

Grand (2003) advocates that both egoistic (knaves) and altruistic (knights) motives are alwayspresent when an actor is deciding what to do (behaviour). On the other hand, the behaviour of

an actor is subject to its power, attitude and appreciation by other actors within the network.

The queen in the model resembles the most powerful piece on the chessboard, whereas the

pawn resembles the least powerful piece. Le Grand (2003) argues that the motives of actors


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are subject to appreciation by others; for instance, when professionals are treated as knaves

by another actor, they often turn into knaves.

There are two axes in Le Grands model. On the x-axis the knights are placed as counterparts

to knaves. Altruistic (knight) motives are described as the actorsconcern for the welfare of

others, whereas egoistic (knave) motives help the actor himself reach selfish goals, such as

securing a good income or maintaining a certain status or working conditions. On the y-axis

queens are placed as counterparts to pawns; queens are in a position to use their power (activeattitude) and pawns are subject to the actions and behaviours of others (passive attitude). This

theory can help to identify the motives of actors within the networks between formal and

informal care and to understand their behaviour.

2.3 Three frames of reference to define carers

Informal carers can be described by certain roles, and Twiggs (1989) theory is useful in

defining the possible assumptions of nursing homes regarding informal carers. Twigg

(1989:55) has developed three frames of reference to define carers: (1) carers as resources,

(2) carers as co-workers and (3) carers as co-clients. These models represent three ideal types

of agencies orientationstowards informal carers and will be explained in the following sections.

2.3.1 Carers as resources

The first frame is carers as resources (Twigg 1989). Twigg (1989) explains that a large part of

care within long-term care for the elderly and dependent people is provided by informal carers.

Therefore, informal carers should be recognized as an important type of resource. Twigg(1989) emphasizes the fact that informal carers are a type of resource unlike other resources.

Figure 1: Le Grand (2003)


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First, informal care is often delivered before formal care. In theory there may be substitution

between these two forms of provision, but this substitution is in fact constrained by normative

assumptions that prefer provision by the informal sector (Twigg 1989:56). The second reason

why carers are different from other types of resources is that they are not obliged to comply

with formal laws of supply and demand. Carers are a resource that cannot be produced by

policymakers or policy itself, and they cannot be activated or deactivated by certain incentives

and disincentives (Twigg 1989:56). Informal carers are also not subject to supervision or

control (Twigg 1989:57). An implication of this model for policy and practices is that nursing

homes should aim to maximize the use of such a resource. An important task in this approach

is to understand the nature of the informal sector and to appreciate the character and structure

of the resource, while considering their potential and limitations as well (Twigg 1989:57).

However, fears of substitution by formal inputs for informal care will be present. Additionally,

the healthcare organisation within this model will not be concerned, or be only slightly

concerned, with the welfare of the carer (Twigg 1989:58).

2.3.2 Carers as co-workers

The second model is that of carers as co-workers(Twigg 1989). In this frame nursing homes

work in parallel with the informal sector, with the goal of playing a co-operative and enabling

role (Twigg 1989:58). This frame is in contrast to the first type, because within the first type

the informal sector is seen as a separate world with a specific background (1989:58). In thissecond frame the aim is to overthrow the separation of formal and informal care and to link the

two (Twigg 1989:58). Twigg (1989:58) describes it as the interweaving of the two types of

care. However, there are essential differences in the two systems in terms of the normative

bases on which the formal and informal sectors are predicated. The formal sector is: governed

by classical features of rational-legal authority, whereas the informal sector is particularistic,

marked by strong affect and characterised by long-term reciprocity(Twigg 1989:59). The care

knowledge with regard to the specific client is rooted within the daily experiences of informal

carers. Within this frame of carers as co-workers there is a mixed goal; to maintain and enableinformal care, but in a way that recognizes the importance of the morale of the informal carer

(Twigg 1989:59). Creating high informal carer morale and involvement represents an

intermediate outcome on the way to the primary outcome, namely increased welfare and

quality of life for the dependent person (Twigg 1989:59).

2.3.3 Carers as co-clients

Within the third type carers are regarded as co-clients(Twigg 1989). In this model the informal

carer is supported by the nursing home in executing their informal care tasks. The amount of


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support is dependent on the capabilities and age of the informal carer. The aim of intervention

is the relief of strain on the carer; it is sometimes reinterpreted in terms of a medical model of

stress and fully integrating the wellbeing of the carer into agenciesconcerns (Twigg 1989:60).

The relationship between the formal and informal care shifts in these three models (Twigg

1989:61). The first type (carers as resources) represents the given against which nursing

homes act. The nursing homes relate to the informal sector as if it were a background or a

certain object and try to understand the nature and notions of informal care, but they have in

fact no obligation to it (Twigg 1989:61). In the second model nursing homes recognize the

importance of informal care and relate more actively to it by enabling, encouraging and

supporting carers. However, they execute this in an essentially co-opting and instrumental way

(Twigg 1989:61). In the third model informal carers have become fully integrated, and in this

model the care agency can no longer simply regard informal carers as resources to be

exploited or workers to be co-opted. Nursing homes must recognize their obligatory

relationship with informal carers ((Twigg 1989:61). With these three models by Twigg (1989)

the relationship between care agencies, clients and informal carers can be identified.

2.5 Expectations of informal carers

The scientific literature pays little attention to the expectations of healthcare professionals with

regard to informal carers. There is some evidence that there may be discrepancies betweeninformal carers expectations and their realities. Additionally, there is some evidence that the

expectations of informal carers influence the process of making meaning, and that informal

carers use expectations, explanations and strategies to interpret their circumstances in the

context of their lives, to identify those circumstances that required interventions, to select

strategies to manage those circumstances, to predict the outcome of a strategy and to make

sense of the events that occurred (Ayres 2000). However, it remains unclear how reciprocal

expectations that informal carers and healthcare professionals have about each other

influence the collaboration between these two actors and how the relationship betweenhealthcare professionals and informal carers can be characterised or defined.

2.6 Defining the relationship between professionals and informal carers

To understand the relationship between healthcare professionals and informal carers, it is

needed to define and characterize the relationship between them. Within the scientific literature

there is little research that emphasises on the characteristics and definition of the relationship

between health care professionals and informal carersThis can be explained by the fact that

the notion of informal caregiving within residential long-term care is a fairly recent development,


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initiated by governmental reforms that introduced new expectations of informal carers in the

current participation society However, the relationship between healthcare professionals and

family carers or nurses has been described in the scientific literature, and since informal

carers are mostly family members (De Klerk et al. 2015, Expertisecentrum Mantelzorg 2016)

the following article is considered eligible for use in the present study.

Ward-Griffin et al. (2003) researched the relationship between families and registered nurses

in long-term care facilities and identified four types of family-nurse relationships: (1)

conventional, (2) competitive, (3) collaborative and (4) carative.

Figure 2: Ward-

Griffin et al.

(2003)

2.6.1 Conventional relationship

In the conventional relationship the nurse is the expert caregiver, whereas the family has a

visitor role (Ward-Griffin et al. 2003). Although family members often provided intensive

informal care for the client while the client was still living at home, their role within the long-

term care setting primarily is providing companionship. Within this relationship the nurse is

expected to be responsible for most of the caregiving tasks. There is a more traditional,hierarchical relationship between families and nursing staff: families are not encouraged by the

nurses to become involved in care, and nurses use their authority and status to address

problems affecting the client, with minimal participation from family members. In order to

maintain a dominant position, the nurse uses controlling strategies such as instructing and

informing, which results in family compliance. However, the familys strategies of consenting

and complying also show a passive response to the nurses decisions. Family members feel

overpowered and outnumbered by the nursing staff because they interact with a whole team

of nurses rather than with one primary nurse (ibid.).


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2.6.2 Competitive relationship

In the competitive relationship, the nurse and family member work side-by-side in equal but

competing caregiving roles (Ward-Griffin et al. 2003). This relationship is characterized by

underlying conflict and unlike the conventional relationship both the nurse and the family had

high role expectations on one another, because they were dependent on one anothers care.

Family members were often perceived as necessary hindrance, because the nurse strongly

relied on the family to provide the care for the client. In this relationship both the nurse and the

family practice strategies to gain control of the situation. Within the conventional relationship

this competition of power is not present. The strategies used by nurses and family included

informing, avoiding, confronting and compromising one another. The nurse attempts to

maintain the family in their rightful place within the long-term care setting, while the familyresists being put in their place. This may lead to an over-dependence on the family, a lower

work satisfaction and a decrease in the quality of care (ibid.).

2.6.3 Collaborative relationship

In the collaborative relationship(Ward-Griffin et al. 2003) the nurse and family member work

together to achieve a mutual goal. This non-hierarchical relationship is characterized by mutual

decision-making and a predominant presence of family involvement within residential care.

The nurse and family work together as equals, sharing their knowledge and skills. Unlike the

two previous types of relationships, within this relationship the familys contribution is

recognized and valued by the nurse and the nurse treats the family as a full partner in care.

Within the collaborative relationship there can be some fading of the two roles, but both parties

agree upon the fact that a certain overlap is necessary for the partnership to succeed. In

comparison to the two previous types of relationships, the nurse and the family can solve

problems by consulting with one another. Reciprocity, respect and trust form the base of this

type of relationship (ibid.).

2.6.4 Carative relationship

In thecarative relationship the family is seen as a unit of care (Ward-Griffin et al. 2003). This

means that the nurse relates to both the family member and the client himself as clients that

need care. This relationship is characterised by a strong emotional connection between nurses

and family members, in which nurses show sincere concern and compassion for family

members who are dealing with their needs. In this relationship there are minimal expectations

that family will be involved in the care of the client. The nurse uses complementary and


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proactive strategies by spending time with and offering assistance to the family, while the family

members use passive strategies by accepting assistance (ibid.).

2.7 Conceptual model

By using the actor-network theory (Latour 2005, Latour 1987, Cresswell et al. 2010) in

combination with the motives of carers (Le Grand 2003, Ward-Griffin et al. 2003) it is possible

to study the behaviour of actors within the collaboration between healthcare professionals and

informal carers. The three configurations of carers (Twigg 1989) also contribute by describing

prototypes of the informal carer role the approaches of nursing homes towards informal carers.

Using the main theories discussed in the theoretical framework, a conceptual model has been

constructed.

In the conceptual model is shown that the motives and expectations of formal and informal

carers influence their behaviour (Le Grand 2003 The (inter)personal attitudes and power of

informal and formal carers are considered to be also influential for the enacted behaviour of

these actors within the collaboration (Latour 2005, Latour 1987, Cresswell et al. 2010). The

drawn arrows between the items stand for an interaction or influential connection of the item

with another item. Further on the client is shown in the model, because delivering care to the

client is the primary reason that health care professionals and informal carers collaborate with

each other. Health care professionals are considered in this framework as nurses or auxiliarynurses. Informal carers are considered the relative or partner, a friend or a neighbour who has

a significant personal relationship with the client. In this conceptual model it is assumed that

health care professionals, clients, the nursing home and informal carers are influencing one

another. Because this research focuses mainly on the relationship between health care

professionals and informal carers, the underlying motives, attitudes, behaviour and power of

these two actors are displayed in the model and will be the main focus of this research.

The relationship itself will also be studied, with the aim of defining the relationship between thehealthcare professional and the informal carer in order to interpret the nature of this relationship

(Ward-Griffin et al. 2003). Because the nursing homes policy and management influences

other actors, it can be influential in terms of stimulating or discouraging the collaboration

between healthcare professionals and informal carers. It is also crucial to take into

consideration the fact that nursing homes are subject to government policy and changing

regulations, which can likewise lead to a change of policy and management within the

organisation itself so that it can align itself with new governmental policy and regulations.


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Figure 3: Conceptual model


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3. Research design

This chapter will discuss the methods that are used to conduct this research. First, the choice

to use qualitative research methods will be explained. Second, the four phases of this research

will be explained. Third, the case selection will be described, as well as the data collectionmethods and analysis. At the end of this chapter the quality of the research methods will be

discussed.

3.1 Choosing the study design

To answer the research question of this study, a qualitative research design has been chosen.

The first reason therefore is that research aims to provide insights into the characteristics that

influence the relationship between healthcare professionals and informal carers within long-

term care. Qualitative research methods are eminently suitable for studying such human

interactions, while quantitative research methods deliver less detailed data about the

characteristics and elements within this relationship. Second, by using qualitative research

methods fewer interviews are needed to acquire detailed research data. Furthermore, because

it is desirable to collect detailed information about the collaboration between healthcare

professionals and informal carers, a more qualitative research design will better fit the

objectives of this research study to gain insights about the human interactions within the

relationship, and it will also deliver more in-depth data about this relationship itself. Therefore,

qualitative research methods are preferred over quantitative research methods. Thus, by

employing qualitative modes of inquiry, the researcher attempted to identify different views

healthcare professionals and nursing homes have of informal carers, in addition to the

experiences informal carers have within their collaboration with healthcare professionals and

the nursing home in general.

3.2 Case-selection

A multiple case studywas conducted in which two nursing homes that provide residential carewere studied with the aim of comparing them with each other. In both cases the collaboration

between healthcare professionals and informal carers was studied and compared. Due to the

recent legal reforms in residential long-term care (from AWBZ to WLZ), policy changes have

been made within the organisations regarding the role of informal carers and volunteers.

Therefore, the aim of the study was to describe the impact these reforms have had on the

collaboration with informal carers in two cases, especially with regard to the relationship

between healthcare professionals and informal carers. Two healthcare organisations were

selected for this research: Argos Zorggroepand Eykenburg. The case selection was done on


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the basis of the most different caseprinciple, in which the differences between the nursing

homes are at the core of the selection criteria. There are organisational differences between

the two cases in their care approaches, which consist of differences in views on informal care

as described in policy plans, the size of the two organisations, the numbers of employed

healthcare professionals and their financial budgets. The cases will be discussed I Chapter 4

on the basis of these differences. By selecting these two different organisations that deliver

the same type of care it is possible to compare the possible connections between scale and

its impact on collaboration within the relationship between healthcare professionals and

informal carers in the two cases.

3.3 Data collection methods

There are multiple data resources used within this research study. Policy documents from bothorganisations concerning informal care have been used to understand the policy perspectives

of both organisations. Additionally, data from annual reports and annual calculations have

been used to compare the organisations in terms of scale (Appendix C). The researcher

conducted 13 semi-structured interviews with respondents from both organisations

(Mortelmans 2011:216). Respondents were selected in co-operation with contact persons

within the two nursing homes who made the appointments with the healthcare professionals

and the informal carers. The snowball method was used to select additional informal carers

who were subsequently interviewed (Mortelmans 2011:155).

The following respondents were individually interviewed: five healthcare professionals, four

informal carers, two healthcare managers, one quality officer and one director. Volunteers

were excluded as respondents because this research aims to examine the relationship

between healthcare professionals and informal carers. Furthermore, including volunteers

would have made the research scope too broad. The researcher developed a topic list to

conduct the semi-structured interviews with the respondents. The complete Dutch topic list can

be found in Appendix A. Additionally, the researcher attended a living room gathering with

informal carers. During this gathering the researcher took on the role of an observing

participant, whereby it was possible to experience how informal carers interact with healthcare

professionals and managers in practice. The main goal was to collect the data in order to

examine the collaboration between healthcare professionals and informal carers from different

perspectives. Thus, there was a strong focus on collecting extended data that could describe

and evaluate the characteristics of the collaboration between informal carers and healthcare

professionals.


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3.4 Data analysis

The interviews and focus group were transcribed verbatim. Subsequently, the transcripts were

thematically coded by the researcher using the following methods. The adapted practice model

was used, in which four interviews were coded openly (Mortelmans 2009:359), after which the

first axial codes were developed. The researcher printed these four interviews and coded them

by hand. Then the rest of the interviews were printed and coded axially by the researcher, on

the basis of the earlier axial codes extracted from the first four interviews. Additional axial

codes were developed, because the first axial codes were not sufficient to code all the

interviews. The codes that were developed can be found in Appendix B and are used to discuss

the results in Chapter 4.

3.5 Quality of research

3.5.1 Internal validity

An important issue in qualitative research is internal validity. It is important that the

interpretations of the researcher correspond to the collected data (Mortelmans 2009: 436).

Moreover, the interpretations that the researcher makes must be credible and trustworthy

(Mortelmans 2009: 436). The position as researcher within this research is important, because

the researcher in a qualitative study is implicitly part of the research itself. The researcher had

no potential conflicts of interests to declare, including relevant financial interests, activities,

relationships, and affiliations with both organisations included in this research. Furthermore,

prior to data collection within the field, the researcher had only gone through the organisations

general data and the policy plans that were published on their websites.

To further improve the internal validity, the researcher tried to collect in-depth data. This was

done with supplementary questions after the respondents initial answers;when the answer

was not clear enough or not explained well, the researcher tried to ask the respondents more

questions. In this way a richer and more complete data set was created. In addition, self-reflection and peer review by a fellow student were used to improve the internal validity

(Mortelmans 2009: 440). Furthermore, this research makes use of theoretical triangulation, in

which the data is viewed from different theoretical perspectives (Mortelmans 2009: 442). To

ensure that the respondents were quoted adequately, the transcripts of the interviews were

sent to the respondents in order to do a member check (Mortelmans 2009). The internal validity

is further strengthened by the additional supervision of three researchers from The

Netherlands Institute for Social Research (SCP).


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3.5.2 External validity

Increasing generalisability is desirable so that elsewhere in the Netherlands this knowledge

can be used by policymakers to change practices, and so that other researchers can conduct

further research on the subject. It is difficult to create high external validity within qualitative

research. The researcher attempted to increase the external validity by using detailed

descriptions (Mortelmans 2009:442). For this research it was therefore important to not only

explain the behaviour or describe the relationship between the actors, but also to describe the

context as much as possible, so that the results can be meaningful for other organisations that

consider themselves to be part of the same context.

3.5.3 Reliability

Reliability in qualitative research can be divided into internal and external reliability(Mortelmans 2009: 433). The internal reliability was increased in this research because only

one researcher conducted the interviews, so there was little interpersonal variation between

the researchers approaches (Mortelmans, 2009: 434). External reliability concerns the

question of whether the study as a whole is replicable (Mortelmans 2009: 434). Because

qualitative research is often conducted in a certain context that is unique, it is difficult to

replicate this entire study and expect similar results. However, the same topic list and codes

can easily be used within other long-term care organisations to study the characteristics of the

relationships in the collaboration between healthcare professionals and informal carers.

Finally, within qualitative research it is important that methodological decisions made during

the research are carefully explained. The researcher attempted to describe this as completely

as possible in Chapter 3.

3.5.4 Ethical considerations

To ensure the privacy of the respondents, their names are not reported anywhere in the report;

they remain anonymous. Respondents were properly informed and prepared for the interviewsby the researcher via a short introduction that mentioned the goals of the research, the

participating organisations, expectations for the interview and the researchers contact details,

such as email address and full name. The researcher asked permission to record the interview

before the recording was started, in order to secure permission to record the interview with the

aim of transcribing the interview later on. The researcher properly informed all respondents

about the progress of the research study, and their email addresses were requested for this

purpose during the interview. This also made it possible to execute the member check of the

interview transcripts by emailing the transcripts for the check.


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4. Results

This chapter will describe the research results, which will be done using the qualitative data

that was collected as described in Chapter 3. In this chapter the selected cases will also be

described. In this way a clear outline will be provided of the context in which the results werefound. The results are split up in different perspectives, namely the organisationsperspective,

the healthcare professionals perspective and the informal carers perspective. Further on,

challenges in the collaboration between informal carers and healthcare professionals will be

described. Finally, ideas that respondents for the future will be mentioned as well.

4.1 Description of the cases

The two cases, Eykenburg and Argos Zorggroep, will be described using empirical data.

Specific information is given below about the two cases, and Appendix C describes additional

organisational information, such as the size and scale in terms of beds within the organisations,

financial budgets, the financial situation and the employment of paid workers.

4.1.1 Argos Zorggroep

Argos Zorggroep is a healthcare organisation in the Rijnmond region that offers services along

the whole spectrum of long-term care, providing care, community services, rehabilitation and

housing for the elderly. This includes care services at home, domestic help at home, long-termresidential care and palliative care within the hospice. Argos Zorggroep is

a large organisation, with a total of 16 nursing homes. The researcher chose to conduct the

research in one long-term residential care location: Klepperwei. This choice was made

because this location recently began to collaborate with informal carers by organizing living

room gatherings, where informal carers evaluate their collaboration with the formal care

provided by the nursing home. These meetings provide informal carers practical tips and tricks,

but are also meant to create a stronger bond with the organisation. Furthermore, in this way

informal carers have the opportunity to meet peers who also provide informal care in order toexchange personal experiences.

In general, Argos Zorggroep has an extensive policy plan regarding informal carers, and

theories of informal carers were used to design the policy. Additionally, this organisation has a

strong policy department, with policymakers who wrote this policy plan with a strong focus on

informal carers. At this residence they provide nursing care and residential care. Within this

residence clients have their own rooms and share their living room with other clients in the unit.

This location will be closed no later than 2017; the building is out-dated and will not be


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renovated due to decreasing demand for nursing homes in the near future, which is due to the

new long-term care act (WLZ). Clients who live in Klepperwei will be transferred to the location

at Hooge-Werf. Argos Zorggroep made a profit in the past three years, with a profit of

approximately 0.9m in 2013, 0.4m in 2014 and2.0m in 2015 (Argos Zorggroep 2014, Argos

Zorggroep 2015).

4.1.2 Eykenburg

The second case selected is Eykenburg, a health care organisation in The Hague that offers

services along the whole spectrum of long-term care. This includes care services at home,

domestic help at home, long-term residential care and palliative care in the hospice. Eykenburg

is a small nursing home that consists of two nursing homes: Het Zamen and Huize Eykenburg.

In terms of scale (personnel, budget and inpatient clients), Eykenburg is approximately fivetimes smaller than Argos Zorggroep (Argos Zorggroep 2015, Eykenburg 2015). This research

was only conducted within Eykenburgs residential care, namely that provided at Huize

Eykenburg, a location where they provide nursing care and residential care.

Because of its small size Eykenburg tried to adapt as quickly as possible to the recent

governmental changes in regulation and financing, because they are very dependent on

government budgets. In contrast to Argos Zorggroep, Eykenburg has fewer resources for

policymaking, because the sector care manager is also responsible for making policy and theyhave no support from a policy department. In contrast, Argos Zorggroep is equipped with a

central policy department at its main location. Within Eykenburg clients have their own rooms

with a single bed, a bathroom and a toilet. Clients share their living room with 12 other clients.

Eykenburg made losses in 2013 (-1.0m) and 2014 (-2.3m) (Eykenburg 2014) and made a

small profit (0.2m) in 2015 (Eykenburg 2015).

4.2 Organisational perspective

The first perspective discussed is the organisational perspective, focusing on the

organisational context and the recent developments in budgeting and legislation on the

procurement of long-term care (WLZ). Within this organisational perspective the impact of

budget cuts will be discussed. Moreover, the role of informal carers and expectations of them

will be discussed. Next, the support of informal carers will be described. Finally, organisational

dependency on the support of informal carers will be discussed.


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4.2.1 Impact budget cuts and transition long-term care

The Dutch government has cut up to 30 percent of the long-term care budget (citation 100).

The respondents agree that these are significant budget cuts that have a large impact on the

way long-term care is delivered now and will be in the future. This is confirmed by the annual

reports of both organisations, wherein both organisations seem to be struggling with financing

care within the given budget restrictions (Eykenburg 2015, Argos Zorggroep 2015). However,

the respondents from the management of both organisations agree upon the fact that the

budget cuts are needed to keep long-term care in the Netherlands sustainable, but they

strongly challenge the way the organisations work together with informal carers and

volunteers.

It is a budget cut if you compare it to how we spend the money 10-15 years ago, but that is not

the issue. That is not what we want nowadays and I can imagine this is not what we want

nowadays. Thus, this means that you have to work together. That means that we are

organising [care] in a different way than before, but if you want to deliver as much as care as

you want, then you have to work together with paid and unpaid professionals. Because the

care provided by paid professionals is only getting less and less. Director Eykenburg citation

101

The director of Eykenburg explains that budget cuts lead to a more important role for informalcarers within the organisation, which means that healthcare professionals must work together

with informal carers more than the organisation and the professionals did before.

We receive 30 percent less money than 2 years ago, for next year we will receive another 40

percent less money. These are substantial amounts, so it is not the case that our people are

unable to cope with the demand, but that there is no money to pay the healthcare professionals

that do the job. So if you want to deliver the care the people are asking for, you have to work

together. There is simply no other choice. Director, Eykenburg, ci tation 100

The healthcare manager of Argos Zorggroep describes the same phenomenon. This

respondent also argues that they want to deploy informal carers in providing care for clients.

This can be linked to the role of carers as co-workers (Twigg 1989), because the manager also

mentioned that they must support and empower informal carers. Therefore, this quote does

not fit in with the carers as resources approach.


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Nowadays, certainly at this moment in time, we need each other. We see that the government

spend less money on health care professionals, so we have to deploy [informal carers] smartly.

We seek for a certain support that informal carers can give us. In turn, we seek certain support

that informal carers can give us. In turn, we have to support them as well to empower them.

Healthcare Manager, Argos Zorggroep, citation 200

The budget cuts have led to a change within both the organizations where they become not

only care-delivering organisations but also facilitating organisations. It became clear that both

health care organizations have a stronger focus on budgets, then before. This means that

health care organizations nowadays have to constantly control budgets within certain care

packages, instead of receiving one general sum from which everything can be paid instead.

In the past everything got paid for. In the last year you see that payments are shifting and that

managing the care is also under pressure. We can facilitate and some activities we can still

execute within the funding we get from the government. Healthcare Manager Argos

Zorggroep, citation 201

Another manager explains the budget cuts from the government in the same way, adding that

they can no longer deliver many extras to their clients. Therefore, they are more dependent on

informal carers and volunteers than ever before.

In the past we received a money bag, from which you could pay everything. Nowadays you

have to constantly look to the reimbursements within the care packages: what must I do from

that money and what can I do with that money?And then we really need the informal carers

and the volunteers, so you really have to get it from them. Healthcare Manager, Eykenburg,

citation 102

The same manager also argues that based on recent developments, the system inside thenursing homes will look more and more like at home in the domestic situation, meaning that

the nursing home clients live in the nursing home and receive certain care, but that there is a

collaboration or combination of care with informal carers.

Well, if you look at the recent developments, that you only get care if it really is not possible

another way and the budgeting is precisely adjusted, I think we are going to a situation where

the care within the nursing home resembles the home care that is provided in the domestic

situation. So, the people do live here and they receive certain care, but there is more and morea combination, that we do it together. Healthcare Manager Eykenburg, citation 105


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In summary, these quotes show that budget cuts have had an enormous impact on Eykenburg.

In contrast to Eykenburg, it seemed that Argos Zorggroep is coping well with the budget cuts

and is not depending significantly more on informal carers or volunteers than before or at

least this cannot be extracted from the collected qualitative data. However, this can be related

to the financial context of Argos Zorggroep, which is more favourable than the financial context

of Eykenburg.

4.2.2 New role of informal carers

These recent developments have led to a new role for informal carers; they are becoming more

important in the care process for the client than ever before. Even within Eykenburg, these

developments have led to a new way of defining informal carers and volunteers, and they ask

informal carers to execute more tasks with regard to the client living in the residence, such ashelping with cleaning hearing aids.

Informal carers are becoming more important for us. We are living in a participation society,

and that means that healthcare truly has to be organised another way. Then we have to do

with paid and unpaid professionals, and then also volunteers. Informal carers and volunteers

are a substantial part of the organisation, because 30 percent of our people are unpaid

professionals who contribute to the work here, and that is a big percentage. In the future, this

will be needed more and more, because the budgeting is changing, but also because one

desires to keep the social network of the client in place. This means that at the intake we ask

informal carers, the things you performed in the domestic situation, can you perform it also in

the residence? That is new for informal carers, but also new for the paid professionals, because

in the past they took over. That is what we are doing less and less. We take over less, but we

support more and more. Director, Eykenburg, ci tation 103

These changes go further than just the changing definition of informal carers; they also entail

an entirely different approach to designing the organisation, as well as the approach of informalcarers. Eykenburg is already planning to transform the Human Resources department into the

department of therecruiting, retaining and educating of paid and unpaid professionals .

We are going to start this [transform the HRM department] within the next year. That also

means we are going to give more coaching; for instance, if those people get sick, then we are

also going to support them like we do with paid professionals. Director, Eykenburg, citation

104


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This new role for informal care can also be described as a culture change within long-term

care. This means that paid healthcare professionals and informal carers must get used to this

new role, because with changing roles the actors also influence each other, as described in

the actor-network theory (Latour 2005, Latour 1987, Cresswell et al. 2010). In addition, a

manager added that informal carers are not always willing to adapt to a new situation and to

make concrete commitments about what can be expected from them, which can be linked to

the assessment of the relationship as competitive (Ward-Griffin et al. 2003).

4.2.3 Expectations of informal carers

This culture change has induced nursing homes changing expectations regarding informal

carers, but this also works the other way around. Both organisations acknowledge the

important role of informal carers and the expectations they have of them within this role. Theyalso mention that the informal carer can contribute to healthcare delivery by providing their

knowledge of and experiences with the client, with the goal of delivering care in a way that

connects with the clients preferences. However, neither of the organisations clearly state the

expectations they have of informal carers in their policy documents (Argos Zorggroep 2013,

Eykenburg 2016). The expectations the organisations have concerning informal carers

therefore remain vague. On the other hand, it is also about managing expectations from clients.

In the future at Eykenburg, less care will be provided by paid professionals, and some care will

be provided by unpaid professionals like informal carers or volunteers. This is in contrast tothe traditional and more conventional relationship that nursing homes used to have with

informal carers.

Eykenburg thinks it is important that expectations both between organizations and informal

carers are clear. Through an optimal combination between client-care-professional care and

voluntary care (by unpaid professionals) also the quality of total care will increase. Policy

document (Eykenburg 2016)

Eykenburgspolicy plan described some examples of informal care tasks, such as support in

eating and drinking, serving coffee on the ward, support with activities and helping with

administrative and financial tasks. Both organisations expect that informal carers should

participate in an active role when designing the clients care living plan. In addition, both

nursing homes assign the primary nurse as the first point of contact for the informal carer. Both

organisations do not obligate informal carers to be active in the clients care process, but when

agreements are made and the informal carer cannot fulfil these agreements, the professionals

must actively think how to provide substitutions for the original agreement. In contrast to the


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former situation, the organisations expect that informal carers will continue to perform certain

tasks that support the well-being of the client (e.g. help with eating, walking outside, drinking a

cup of coffee). The boundaries of informal care are not clearly stated within these documents.

Thus, management or policy cannot easily prescribe defining expectations and possible

boundaries; they must be shaped in practice. This could also relate to the actor-network theory,

wherein (changing) expectations must be embedded in practice by relevant actants or actors,

not just the management or organisation that induces that changing expectations. Therefore,

in the interviews with informal carers and healthcare professionals the expectations of informal

carers are explicitly discussed, because theory and information were lacking to define clear

expectations.

4.2.4 Support for informal carers

The organisations both provide support for informal carers in many ways: through informal

carer meetings, through frequent communication during the time the client is living in the

residence, through specific trainings for informal carers and volunteers and through educating

the informal carer, for instance concerning the clients diagnosis. At Eykenburg they also try to

encourage informal carers to meet other informal carers by organizing a group that helps

provide meals to the clients. However, it seems that informal carers do not really collaborate

with other informal carers yet. At Argos Zorggroep carer interaction depends on the care unit

itself. In one care unit there is more participation and collaboration with informal careers, andin another such collaboration is non-existent.

They could coordinate with each other. That is not happening so much at this moment in time.

We tried it with an activity with the theme eating together is a party. We wrote beneath it: We

are looking for enthusiastic informal carers and volunteers that would like to support a group

of clients with eating at the table. Quality Officer, Eykenburg 107

At Eykenburg, in comparison to Argos Zorggroep, during the intake conversations they attemptto set clear expectations above the table and be transparent with informal carers and clients

about what the organisation does and what kinds of tasks informal carers could do after the

clients admission to the residence. They also provide education about certain diseases on

specially organized family nights.

Already at the intake conversation we try to define what is going on, what the informal carer

could do in terms of tasks after admission to the residence. But we also ask them this in the

ward itself, when they are visiting. We also give information about certain diseases, processes,


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how it looks, what it means, how it develops we educate about it. Director, Eykenburg

citation 108

While support for informal carers is organized in order to help and support the informal carer,

certain actions can have unintentional consequences. For instance, informal carers do not

always benefit from meetings with other informal carers. A critique is that many stories of other

informal carers do not contribute to the well-being of the informal carer, because they have

already enough of a burden to deal with themselves. This can be linked to the theory of Ward-

Griffin (2003), which states that clients can have certain expectations that are not met through

these carers meetings, and therefore the meetings are no longer considered useful or fruitful

for them to attend. For instance, carers can be negative about listening to stories of others that

are not relevant to them.

We now have informal carers meetings. What I noticed the last couple of times is that informal

carers mention that they already have enough on their mind dealing with themselves, and they

are complaining about the fact that they have to listen to stories of others. The informal carers

say that they do not need this. Team Leader, Argos Zorggroep 203

Summarizing, supporting informal carers can be like walking on thin ice. It can be very difficult

for healthcare professionals and the organisation or management to imagine the demands

placed on informal carers. Within the changing culture maybe the informal carer has to express

their feelings and wishes more than in the past in order to organize useful support to informal

carers.

4.2.5 Dependency on informal carers

Another important aspect of the organisational perspective is the extent to which the

organisation already depends on informal carers. A healthcare professional at Argos

Zorggroep argues that the caregiving will continue, independently from the presence of aninformal carer.

The care for the client will just continue; it continues 24 hours per day. There I see no change.

Healthcare professional, Argos Zorggroep 204

We ca

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The Collaboration Between Formal and Informal Carers in Dutch Long-term Care

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