2016

THE COLLABORATION BETWEEN

FORMAL 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:

CONTACT@WOUTERMEIJER.EU

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
practitioners office 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 stronger
emphasis 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 semistructured 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 actornetwork 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 de
samenwerking 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 former
Exceptional 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 Term
Care 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 is
being 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 longterm 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 has
been 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 in
the 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 of
formal 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 enhancing
the 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 a
relationship 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 theorys main 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. What this 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 concepts all 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 which
an 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 always
present 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.

Figure 1: Le Grand (2003)

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 actors concern 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 (active
attitude) 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 orientations towards 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.

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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 this
second 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 enable
informal 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 agencies concerns (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 between
informal 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 between
healthcare 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 carers This 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: WardGriffin 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 longterm 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 family
resists 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 the carative 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 auxiliary
nurses. 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 the
healthcare 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 collection
methods 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 longterm 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 study was conducted in which two nursing homes that provide residential care
were 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 Zorggroep and Eykenburg. The case selection was done on

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the basis of the most different case principle, 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 both
organisations 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, selfreflection 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 interviews
by 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 were
found. The results are split up in different perspectives, namely the organisations perspective,
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-term
residential 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 to
exchange 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 and 2.0m 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 five
times 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 they
have 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 informal
carers 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, citation 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 the
nursing 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 more
a 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 as
helping 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, citation 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 informal
carers. Eykenburg is already planning to transform the Human Resources department into the
department of the recruiting, 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. They
also 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 to
the 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)
Eykenburgs policy 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, and
in 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 attempt
to 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 WardGriffin (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 an
informal 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 can see them only as additional and I think that it is very important to see it that way.
Because we dont want to become dependent on the informal carer who doesnt have a

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professional education to perform the primary tasks, the primary care. Healthcare Manager,
Argos Zorggroep 205

These two citations (204, 205) underline how Argos Zorggroep assesses informal carers.
Informal carers are seen as supplementary, but not as an essential part within the primary
care. In contrast, all respondents from Eykenburg underlined the crucial importance of
assessing informal carers no longer as just family or supplementary, but as an integrated part
within the care delivery as well as the organisation itself. The majority of the respondents from
both organisations agree upon the statement that the organisation depends more or less on
the commitment of informal carers and volunteers. The quality officer explains that without the
support of informal carers, they cannot provide the services and level of care that the
organisation really wants to provide to the client.

In the past we had more employed professionals. If these budget cuts repeat every year, then
you notice we can employ fewer professionals. That is of course a pity. We have to be
supported by volunteers and informal carers, because you want to deliver the care the client
wishes. I think that without the support of informal carers we couldnt provide the care we really
aspire to give. Quality Officer, Eykenburg 109

The Eykenburg Director takes it even further declaring that if one of the parties involved in the
care process of the client is lacking, it becomes practically impossible for the organisation to
deliver good care to the inpatient client, both qualitatively and quantitatively. This underlines
the current importance of informal carers as well as volunteers in care delivery in long-term
care. This relates to the budget cuts and changing system long-term care, as well as the
organisational context in which Eykenburg had financial hard times during 2013 and 2014.
Another healthcare professional from Eykenburg argues that the organisation depends more
on volunteers than on informal carers, because this healthcare professional experiences how
the help from volunteers supports him in the daily care activities on the ward.

I think the organisation depends more on volunteers, because they staff the living room, they
facilitate the breakfast for the clients. Also, there are volunteers that help with activities like old
Dutch games organized for clients or that kind of activities. Healthcare professional,
Eykenburg 111

An informal carer for a client at Eykenburg also recognizes the importance of informal carers,
using an observation she made during a visit to her mom.

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But for instance when I am going to visit her to take her with me to go outside and I am
sometimes delayed, then she is sitting at the table in the living room without a TV on, there is
no radio on, it is completely quiet. And then you are sitting just there. Informal carer,
Eykenburg 112

An informal carer of a client at Argos Zorggroep explains that it is a bad thing that the
organisation depends so much on informal carers. He declares that informal carers must be
supportive of the organisation, but not crucial for the delivery of healthcare to the inpatient
clients. This contradicts the interviews with the healthcare manager, and there is no clear
explanation for this.
It cannot be that there are clients within Klepperwei that dont go outside for a couple of years,
because they have no informal carers who care for them, because they have no buddies who
take them outside. And those people really exist, right. Informal carer, Klepperwei Argos
Zorggroep 207

This becomes visible in a citation that gives notion of the restrictions that are present, regarding
the possibility for inpatient clients to go to the bingo activity.

They need an informal carer, otherwise they cannot go downstairs to bingo. So there has to
be somebody that goes with them. Informal carer, Klepperwei Argos Zorggroep 206

Thus, differences between Argos Zorggroep and Eykenburg can be distinguished regarding
their dependency on informal carers. Eykenburg underlines the crucial importance of
incorporating informal carers into care delivery and organisation, whereas Argos Zorggroep
acknowledges the importance of informal carers but does not emphasize a far-reaching and
intensive role of informal carers within care delivery. This may be explained by financial
differences, caused by the different scale of the organisations. However, it could also be that
these are conscious decisions made by both organisations.

4.3 Health care professionals perspective

The perspective of healthcare professionals is the second perspective presented in this
research, focusing on the tasks of healthcare professionals, their expectation of informal
carers, the overburdening of healthcare professionals and the support and education of
healthcare professionals.

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4.3.1 Tasks of health care professionals

The care tasks of the health care professionals in both the organisations are essentially the
same In the morning they perform primary care tasks for the client, which include helping the
clients out of their beds, washing them and dressing them. In the afternoon they help with the
meal and do administrative work and communicate with family and other professionals. They
are also responsible for the communication with the first spokesperson of the client and the
informal carers.

Then you start with helping the clients out of bed, washing, clothing, supporting them with
taking a shower, helping them with breakfast and providing their medication. You maintain
contact with the doctor, the psychiatrist, the dietician and several disciplines like occupational
therapy and physiotherapy. You also communicate with the family for instance when the client
has fallen or when something else important happened in which the family is interested.
Healthcare professional, Eykenburg 113

These tasks for healthcare professionals have in fact not changed significantly since the recent
changes. All healthcare professionals from both organisations describe similar processes that
they perform. This could be a cause for the idea that healthcare professionals have not adapted
their working processes to the new model of assessing informal carers, as proposed by
Eykenburg. This can be linked to the actor-network theory because changes in human
behaviour within interpersonal relationships is a slow process that must translate through
different phases to succeed (Callon & Latour 1981).

4.3.2 Expectations of informal carers

The expectations of informal carers are not clearly defined by either the professionals or the
organisation. However, it becomes clear that healthcare professionals do not expect much
from informal carers. The tasks of informal carers that healthcare professionals describe are
often tasks like supporting certain activities, taking the client outside and retaining social
contacts. Healthcare professionals do expect that informal carers tasks can unburden them
and give the professional a little more time to perform care-related tasks or give a bit more
personal attention to clients. This can be a signal that the collaboration with informal carers is
still seen as the conventional relationship it always was, wherein carers are at most considered
resources but not partners, co-workers or co-clients (Twigg 1989, Ward-Griffin 2003).

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It is just nice, especially when you have to feed eight clients a hot meal. It is just nice if you
can take your time for it and the informal carer is present, because then you have a little more
time. With a meal it is important that you can take your time and create a kind of rest, so that
the clients can consume at their pace. Otherwise it becomes more hurried. Healthcare
professional, Argos Zorggroep citation 202

However, the informal carer is not expected to be a part of the professional team. There is a
clear distinction between the tasks of healthcare professionals and informal carers, which is
encouraged by the healthcare professionals themselves.

I am of course responsible for the care living plan. But in fact you are a team and I think that
informal carers shouldnt be involved within the care team. They are of course informal carers,
volunteers, but you cannot expect them to perform the same tasks that we do. That is not what
we want. With your colleagues this is certainly the case. Healthcare professional, Argos
Zorggroep 207

The healthcare manager at Argos Zorggroep argued that this can be understood as the
informal carer entering the professional domain of the healthcare professional; they are not yet
used to the fact that the informal carer plays an important role. It seems that the collaboration
with informal carers is sometimes assessed as competitive, whereby the professional
competes with the care given by the informal carer, and therefore they can clash within their
collaboration (Ward-Griffin 2003). Additionally, this new process of working together is subject
to the translation that has been made (Callon & Latour 1981). In comparison, the healthcare
professionals at Eykenburg seem to have developed more strategies and have had recent
experiences with collaborating with informal carers, in contrast with professionals at Argos
Zorggroep.

4.3.3 Overburdening of health care professionals

There is less evidence that healthcare professionals themselves are overburdened or see
themselves as overburdened. However, one of the healthcare professionals mentioned that
she is crossing boundaries in terms of suffering from work pressure because of the limited
number of care workers employed.

I think we have too small a workforce on the ward. It is not wrong to work very hard, but I want
to speak openly to you. If you work with two healthcare professionals and you have too few
hands on deck, clients get food and drinks, but sometimes certain tasks are lacking. I am then

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crossing my boundaries, because yeah, you are there for the client, you know. Healthcare
professional, Argos Zorggroep 208

However, even though they complain, healthcare professionals in both organisations are very
driven to deliver the care to the client, even if it is at the cost of their own health or well-being.
This sacrificial and altruistic behaviour is embedded in the strong motives of healthcare
professionals to be useful in society and to help other people. Moreover, this finding can
therefore be linked to the conceptual model wherein the motives and behaviour of healthcare
professionals are dependent variables of the role they play within the collaboration with
informal carers.

4.3.4 Support and education of health care professionals

Both organisations provide little support for trainings that help healthcare professionals with
getting used to the idea that informal carers are becoming more important in the care process
of the client. However, Eykenburg is attempting to find the right way to train their healthcare
professionals in the future.

We are now looking for a way to support the first responsible carer, one-on-one. But we are
also trying to start the conversation with the healthcare professional, what does it do with you,
you have to sell something to the informal carer that you maybe find difficult yourself. What I
often hear is that healthcare professionals have compassion for informal carers and find it
pitiful for them. Healthcare manager, Eykenburg 113

What can also contribute to the lack of support for healthcare professionals is that the
healthcare professionals themselves are not clearly demanding this kind of support or
education from the organisation. The healthcare professionals mention that they are already
equipped to deal with informal carers through their education as primary nurse. A healthcare
professional mentioned that she had already obtained this education through her education as
a care coordinator:

Last year I finished my education as a care coordinator, there we spoke a lot about the
collaboration with informal carers. The conversation techniques, understand the emotions of
the informal carers, not to look only with your professional scope, but also in a more empathetic
way. Health care professional Argos Zorggroep 210

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Thus, providing education and supporting and training healthcare professionals to deal with
informal carers within their new role is lacking in practice. However, both organisations have
plans to organize support and educate the professionals, though they are yet not concrete.
The researcher had expected that Argos Zorggroep had clear plans, because Argos Zorggroep
is also equipped with a special educational unit, Argos Academy.

4.4 Informal carers perspective

The perspective of the informal carers is the last perspective that will be described. For this
perspective it is important to define informal carers and their motives. The tasks they execute
will be described, as well as their limitations as informal carers. The end of this section will
discuss the overburdening of informal carers.

4.4.1 Defining informal carers and their motives

As earlier mentioned, Eykenburg defines informal carers as unpaid professionals which also
implies that they are professionalizing informal carers as a group, interpreting them as a
valuable partner within care. However, this is not the perspective of informal carers, who do
not particularly identify themselves with the label informal carer and therefore may also not
want to be considered an unpaid professional. This directly relates to three ideal types that
define the frame of reference in which the nature of the relationship from informal carers with
professionals should be evaluated (Twigg 1989) and to the four types of relationships that
Ward-Griffin described (2003).

I would use the term informal carer if I were to care for someone who is not a family member,
you know like a neighbour or for friends. Then I would call it an informal carer. Informal carer,
Argos Zorggroep 212

This team leader also notices that they are sometimes stigmatised as being informal carers, a
label that may prevent them for being seen as just human beings.

An informal carer is often seen as a separate target group and I think it is quite stigmatising.
The informal carer doesnt benefit from this either, because in the first place you are just
human. That is the starting point we want to work from. I think that it is normal when you are
taking care of your partner. That is the way to start the conversation with the informal carer.
Team leader, Argos Zorggroep 211

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The informal carers mention that it is not an obligation to take care of their parents or loved
ones, but that it is seen as a matter of course. Informal carers also mention that caring is seen
as the normal or most natural thing to do as a family member.

Everyone is always saying, you are doing so much for your parents and you are sacrificing
yourself for them, but that is not how I see it, because we always had a very strong relationship
with each other, a very loving relationship. My parents were always there for me, always, my
whole life, and now I am taking care of them. I dont see that as an obligation which I signed
for, no, not at all. I found it very natural to do this. Informal carer, Eykenburg 114

Informal carers also do not see their role as one-sided, because they argue that there are
different aspects of being an informal carer: a more human, relative part and a more caring
and representative part. This emphasizes evaluating the role of informal carers as a more fluid
and multi-dimensional role.

I see myself primarily as the daughter who is just there for her mother and I think it is quite
normal that I do this, but on the other side it is kind of an obligation. Look, my mother doesnt
have the power to stand up for herself, so I have to stand up for her. So on the one hand I see
myself as the loving daughter who is just there for her and takes care of her, but on the other
hand I do function as her representative, as an informal carer who is serving her interests.
Informal carer, Eykenburg 122

Informal carers mention that caring does not feel like a real obligation, but more like a moral
duty, as if it is the only right thing to do.

You know, I have lost my father, he is not with us anymore, but then you notice when you lose
somebody in your life, gosh, I think...you should do that as being a child, regardless. I think it
is kind of your duty. Informal carer, Argos Zorggroep 212

However, another informal carer said that when you are caring for a long time and when time
passes by it becomes more of a habit to take care of your loved one. He then argued that you
begin to feel it is in fact like a duty or an obligation to care, because a habit becomes in the
end an obligation. In summary, it becomes clear that the motives for informal carers, if they
are family members, are essentially those described above. Because all informal carers within
this study were family, less can be said about the motives of informal carers who are not
relatives of the client, such as a neighbour or a good friend. Although the informal carers

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mentioned that they did not feel that the informal care was an obligation, it is in fact a strong
moral duty for them.

4.4.2 Tasks of informal carers

Informal carers perform different kind of tasks. Within the collaboration it is necessary to give
informal carers the chance to perform tasks for the client. The healthcare manager of
Eykenburg acknowledges that this role can be the same as that in the home situation, where
the informal carer was already used to performing tasks in the care process.

What we think is important is that informal carers have a role when clients are admitted, and
for us that can be the same role as in the home situation. So, if someone was used to doing
certain tasks, then we provide the room for the informal carer to perform those tasks, and we
want to stimulate that. Healthcare manager, Eykenburg 116

The healthcare manager at Argos Zorggroep mentioned that critical care processes within care
delivery must continue (e.g. activities of ADL, distribution of medication), independently from
the tasks performed by the informal carer. The tasks of informal carers must be additional
tasks, not fundamental care tasks, which merge with the basic care processes. A healthcare
professional who works for Argos Zorggroep describes the tasks of informal family carers as
follows:

That is mostly maintaining the social contacts of the client, going for some grocery shopping
with their father or mother, they clean the closet of the client. They really come visiting to drink
a nice cup of coffee, they go downstairs to the restaurant, have little chit-chats with the
neighbours, so really more the social contacts. Healthcare professional, Argos Zorggroep
214

Within the perspective described above informal carers do not perform healthcare-related
tasks but rather more practical, supportive and non-healthcare-related tasks. However, at
Eykenburg, informal carers explain that they are in fact performing healthcare tasks that also
belong or belonged to the domain of the healthcare professional, depending on the
assessment of the boundaries of care. Nevertheless, an informal carer explains in the following
citation that she clearly resists lifting her mother into bed and cleaning her.
I brush my mothers teeth, I always help her with that. I brush her hair, I put her nightdress on,
so I do a lot of stuff for the healthcare professionals. They only have to lift her into bed with the

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elevator and changing the diaper and cleaning. Yes, that part I am not doing, I think, that is not
what I am educated for. Informal carer, Eykenburg 117

In the following citation it becomes clear that this informal carer is really more than just a family
member who visits the client. This informal carer helps in the evening with all kinds of tasks
until the client goes to sleep.

I help her with undressing. Then she sits in the wheelchair and I help her with brushing her
teeth. Then she washes her face and her hands. I help with that, I do the most. Then I help her
with going to bed, working together with the healthcare professional. Then I tuck her into bed,
I provide a glass of water, put the phone next to her, that kind of thing, and then I go back
home. Informal carer, Eykenburg 118

In summary, the researcher found that the interviewed informal carers at Eykenburg performed
more care tasks than the interviewed informal carers at Argos Zorggroep. This could be related
to the fact that Eykenburg as an organisation emphasizes more on the collaborative
relationship and on the carers as co-workers approach much more than Argos Zorggroep.
Although Argos Zorggroep tries to collaborate with informal carers as co-workers within a
collaborative relationship, they might be stuck in a conventional or competitive relationship. A
specific cause for this cannot be extracted from the interview data. However, it could be argued
that a smaller organisation can more easily change its policy and realize such a change within
ward units in collaboration with healthcare professionals and volunteers. Furthermore, the
director of Eykenburg has shown leadership by stating the extremely important role of informal
carers, which could have empowered informal carers as well.

4.4.3 Overburdening of informal carers

All the informal carers in this study have in the past felt overburdened as a result of the informal
care they provided. One of the informal carers within the research mentioned that he is
currently suffering from the tasks he does as an informal caregiver.
It is not easy. On some days I come home at eleven oclock from Eykenburg and then I have
to do the stuff that is needed, like eat something, do the dishes, washing yourself. I have to
say it becomes quite a burden for me now. I also notice it when I do my morning ritual; I am
quite slow with everything. I am already nearly 70 years old, but you demand certain things
from yourself, like washing yourself, taking a shower, eating your breakfast. It takes a lot of
time. Informal carer, Eykenburg 119

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Additionally, there are often limitations that sometimes cause informal carers to experience
much pressure. Geographical boundaries can also lead to a situation in which many tasks
must be executed by one individual, instead of distributing the care load.

Two of my brothers are not living in The Hague, so you cannot expect them to come here.
They are living outside of the Netherlands. You cannot expect them every time to driver
towards here. Informal carer Eykenburg 120

These citations define the boundaries and limitations of what the government or a healthcare
organisation can expect from informal carers, and that these expectations can sometimes be
too much. In addition, it appears that personal situations of caring are unique and cannot easily
be generalized by the healthcare organisation in general policy. When informal carers feel
overburdened or are becoming overburdened, the healthcare professionals could assess
informal carers more as co-clients (Twigg 1989) within a more carative relationship (WardGriffin 2003). However, healthcare professionals are not yet used to this signalling role within
the residential setting.

4.4.4 Desires of informal careers

To organize healthcare in a way that supports informal carers needs, it is helpful for the
organisation to be open to suggestions mentioned by informal carers. This section describes
informal carers desires that could contribute to improved healthcare outcomes and a better
collaboration with informal carers. Informal carers desire to be more involved with and informed
by the organisation. They do not demand (more) daily contact with the healthcare professional,
but more scheduled communication about the activities within the organisation. This
communication could be as simple as a scheduled monthly mailing to the informal carers.
I think, they dont have to call every time, but if they just would send an email with information
about what they are planning to do with the clients, what you guys can help us with, support
us with activities. They have to try to get in touch with the informal carers. When you have
mutual contact with each other, and you are building a relationship, then you will eventually
gain respect for each other. Now, that part is just missing, because it is one-sided and you
never hear or see something from them. Informal carer, Argos Zorggroep 215

This can be linked to the theory of collaborative relationships, wherein mutual respect and
appreciation should be secured (Ward-Griffin 2003), which is not the case here. The next topic

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is not primarily connected to the collaboration with the healthcare professional in practice but
to the general care process of the client. Informal carers feel that there is in general a lack of
patient-centred delivery that meets the demands of the client. This can be about something as
simple as a specific type of drink or food a client wants to consume or about the daily routines
they have in terms of the time they would like to go to sleep.

My mom was not tired at all. And it appeared that she was in her bed, in the dark, for like an
hour. Yes, that girl, she did not know that watching TV until late is a personal preference of my
mom, that is just her habit. Informal carer, Eykenburg 120

In this case it becomes clear that the daughter of the client knows better what the habits and
preferences of this client are. According to this informal carer healthcare professionals should
collaborate more with her to learn about her mothers personal preferences, which in a way
would contribute to the quality of care but also to her mothers quality of life.
Informal carers argue that the organisations can get much more out of the collaboration with
informal carers, but to accomplish this the organisations must devoutly invest in this
relationship with informal carers. Sometimes informal carers feel they are not heard or
understood by the organisation, even if they try to organize activities themselves, which is
followed by the disappointment that the receive less or even zero support from the
organisation. They sometimes feel like they are running into a wall, because no one is listening
to them. The healthcare organisations must be careful that they do not reject informal carers
because that may lead to a negative valuation of the organisation itself, leading to a situation
in which informal carers give up on taking the initiative, with the effect that organisations may
end up with fewer informal carers.

4.5 Challenges within the collaboration

Within the previous three perspectives many aspects of the collaboration with informal carers
have been described. Within the collaboration and fine-tuning between healthcare
professionals and informal carers we can distinguish a number of important challenges. The
following sections will describe separate challenges.

4.5.1 Variation between health care professionals

Informal carers in particular experience that the variation among healthcare professionals
causes problems in the coordination of care and in the collaboration with the informal carer.

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They swap so much with personnel. That is difficult then, to communicate. Because then, say,
my mother has a urinary infection, then they say, we go after it. Then the healthcare
professional does his job and then he states in the report that he has informed the doctor, but
then the next day is has his day off. Then the next day the healthcare professional has to read
it again and think about what he has to do. Then I have to call to account for this person, again,
that he has to do something. Informal carer, Eykenburg 121

In another example it becomes clear that sometimes healthcare professionals are not wellinformed about the clients living in the residence.

Because you come often on the ward, you know you can ask things about your mother. That
sounds very harsh, but I see certain girls and then I think to myself, she doesnt even know
that my mother is living here. I have to ask that girl nothing, I think to myself, I will wait with my
question and go to the one I usually speak to. So you can gather the information about your
mother, but you have to know who you have to ask the things. Informal carer Argos
Zorggroep 215

In summary, these two previous citations have shown that coordination and transferring
knowledge is very important and could have significant consequences for the informal carers
valuation and rating of the quality of care. Some interpersonal variation within care delivery is
always present, but it should not be possible that people who work on a certain ward
department do not know exact details about the clients living on that ward. Securing that the
coordination of care is performed according to quality standards is a main challenge, in which
increasingly independent healthcare professionals work and rotate across ward departments
within care pools, or even work for multiple care organisations. It could be argued that this way
of employing healthcare professionals undermines the policy aims of the organisations and the
government, in which informal carers are given an important role in the relationship. There is
also the difference in the educational levels of healthcare professionals, which influences the
extent to which they are capable of collaborating with informal carers in a way that contributes
to the care delivery for the client. A healthcare manager of Argos Zorggroep supports the
previous statement by explaining that the ability to support informal carers in the right way is
not always present among all healthcare professionals, because there are different education
levels with different didactic abilities and principles. However, the manager also describes a
possibility for highly educated nurses to educate lower-level healthcare professionals, such as
auxiliary nurses or care assistants.

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4.5.2 Uniqueness of situational context and expectations of informal carers

The abilities and wishes of informal carers are quite personal and unique for every informal
carer. This relates to the idea that every situation is unique in its context, which means informal
carers do not always have the same expectations. This also means that the organisation
cannot always expect informal carers to perform the same tasks and emphasizes a more
individual approach for every informal carer within its own context.
One informal carer said: I am not going to help my mother with eating and drinking, because
I dont like to do that. This specific client also had certain rituals, so we can imagine this
situation and understand the informal carer. But the carer agreed on cleaning once a week, so
the living space of the client is clean. That is meant just to point out that personal preferences
differ, the space they want to experience and that their role is different. Healthcare manager,
Argos Zorggroep 217

The work informal carers perform depends not only on their personal preferences, but also on
their physical ability to perform certain tasks that support the care process. Some informal
carers are simply different in terms of age, health status and their physical ability to perform
tasks. The organisation cannot expect the same tasks from informal carers who live in a
different context and have different abilities to care. This relates to the earlier section about the
overburdening of informal carers and the notion that not every informal carer has the same
abilities to care for a relative.

There are a couple of informal carers who come often here and in their way do some things.
You know, I have the ability to do this, I live close by, also I have the physical ability to go
outside with my mother. I have spoken once to somebody and I said to her, knowing she lived
close by: Well, you can take your mother to there, and then she responded with: Oh no, I
cant do that with my health and well-being, I have pain in my back and I have this and that.
Informal carer, Eykenburg 123

4.5.3 Getting used to the collaboration with informal carers

Another challenge is that healthcare professionals must get used to this other form of
collaborating with informal carers. In the past, professionals informed family and informal
carers about the care, but now active informal carers are more outspoken. One challenge of
getting used to the collaboration is the healthcare professionals fear that the informal carers
are entering the professional domain.

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The most difficult part is that there is sometimes the feeling that the informal carer is entering
their domain, their working space, while this working space has just shifted somehow. You
mainly have to start communicating with each other, looking at what you can expect from each
other. Healthcare manager, Argos Zorggroep 218

This feeling could be due to the fact that healthcare professionals may have worked in a certain
way for years, taking over responsibility from the family when a client is admitted to the
residence. From that perspective, the notion that they must collaborate with informal care is
quite a transformation. This can be linked to actor-network theory, whereby translation must
be executed before a new balance can be reached (Latour 2004). This process is currently
taking place in both organisations, although at Eykenburg this translation seems to be
embedded faster than at Argos Zorggroep.

They have to get used to starting this collaboration; they find it difficult. You know, most of
them are educated with the idea that they are really caring for someone and taking over,
because someone is infirm and demanding healthcare. The idea is that we determine what is
best for the client, how good the intentions may be. Healthcare manager, Eykenburg 124

4.5.4 Boundaries professional care and informal care

With the intensified collaboration between healthcare professionals and informal carers, the
boundaries between professional care and informal care become clearer. However, these
boundaries are not well formulated and perhaps cannot be clearly stated because of the
situational factors mentioned before. These boundaries also change, depending on the type
of relationship that is consciously or unconsciously defined by both actors. The quote below is
an example in which a more competitive view of the relationship between professional and
informal carer is explained that shows that healthcare professionals can hinder or even hedge
the collaboration by digging their heels into the sand

As a healthcare professional you have got your degree, and then this informal carer can
perform the same tasks as you, but without the degree. For healthcare professionals, that is
something that is sometimes quite difficult, to relinquish these tasks. Quality officer,
Eykenburg 127

However, in some scenarios it can be argued that healthcare professionals in fact know what
is better for the client. Sometimes informal carers cross professional boundaries by
undermining the care the healthcare professional provides to the patient. For instance, in the

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following example the healthcare professional decided to get a client suffering from pneumonia
out of bed and was questioned by an informal carer for doing so.

The client has been in bed for a couple of days, suffering from pneumonia, but we want to get
them out of bed, so they can breathe deeply and certainly have help with eating. Then another
family member interferes and argues that the client has to stay in bed, because the client is
constantly keeping her eyes closed. Well, yes, she has her eyes closed, but we know what we
are doing. You know, they are going to interfere. We experience these kinds of things.
Healthcare professional, Argos Zorggroep 219

When the boundaries are clear to both the healthcare professional and the informal carer,
informal carers can adopt tasks when they are competent to do so.

What care tasks can you allow an informal carer to do? I can imagine that if an informal carer
wants to give an injection and is used to giving it to the client, then it should be possible. But I
dont know what the boundary is. I think we should determine this boundary ourselves. I mean,
we absolutely dont let the volunteers inject the client, but if you have a family member who is
for example working in healthcare, this family member could give the injection. Healthcare
professional, Eykenburg 125

Communication within the collaboration between healthcare professional and client is very
important. Communicating means that the boundaries within the specific, unique context of the
client are clear for both the informal carer and the healthcare professional.

I think maybe we could make clearer agreements beforehand. So to speak, this is what we
can provide and these tasks I am willing and able to execute as daughter, son, former
neighbour. That we can talk about these boundaries and that it is clear to the care team what
the content of the agreement is. That is clear to everybody and not that if I am not on the ward,
my colleague is taking over the tasks the informal carers have agreed to perform. I think that
is really important, clear communication, for the care team but also for the family of the client.
Healthcare professional, Eykenburg 126

Additionally, from the perspective of the informal carer it is sometimes difficult to clearly
determine the boundaries, because informal carers experience emotional pressure to feel
endless responsibility while knowing, for instance, that they are not educated as healthcare
professionals to assess the clinical situation.

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You have on the one hand the emotional side, and then your responsibility is endless; you will
do whatever it takes that is within your power, what you know. But sometimes you are kind of
limited, because then I dont know it either, what I said before, about the medical situation with
that foot. Informal carer, Eykenburg 128

Thus, it became clear that Eykenburg is in fact exploring the boundaries of professional and
informal care on three different levels (management, policy and practice). The good practices
of Eykenburg could be that of a management with a set and clear goal and vision for future
care. A key point is that this organisation was open and transparent with both healthcare
professionals and informal carers about the consequences of the organisational changes and
budget impacts. In contrast, it seems that Argos Zorggroep is falling behind in this process of
expanding boundaries. However, this could also be explained by the fact that Argos Zorggroep
does not feel any incentive to change because it is performing financially well enough to
continue doing business as usual and postpone drastic changes that change the collaboration
and relationship between healthcare professionals and informal carer.

4.6 Future of informal carers

The role of informal carers and volunteers is increasingly becoming more important than
before, as a result of the transition of the long-term care system in the Netherlands and its
budget impacts on the two organisations within this research study. However, within the
research it became clear that informal care is still not the standard. Many clients living within
the residences are not directly supported by informal carers. Both care organisations in the
research therefore underline the future importance of informal care in the care process for the
client.

In the future, the informal carer plays a major role, just like the situation where the client is still
living at home. Healthcare manager, Eykenburg 127

There are challenges ahead to further coordinate formal and informal care and tailor the
collaboration to the unique situational context in which the informal carer is living. Additionally,
the coordination between healthcare professionals in order to support the informal carers is
key. The main goal for the organisations is to assist the informal carers in the tasks they like
to perform and also provide the necessary room for tasks the informal carers are willing to
perform. This also requires another mix of employees, as a manager at Argos Zorggroep
argued.

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In the ideal world I imagine there are healthcare professionals within our organisation who
secure the delivery of basic care for the client and are able to guide and assist informal carers
in meaningful contacts with the client. That also means that we need another mix of healthcare
professionals than we have equipped at this moment, more highly educated healthcare
professionals who can provide the didactic support to informal carers. Healthcare manager,
Argos Zorggroep 220

To develop the coordination between healthcare professionals and informal carers, a

healthcare professional working at Eykenburg argued that it could be helpful to create a
working group that thinks about the role of informal carers and how to organize support for
them, just like the organisation has working groups equipped to look at medical incidents. This
group could consist of a combination of healthcare professionals and informal carers who
would like to think about the future of informal care. However, just like client advisory boards,
it is hard to find clients who are devoted to helping with this and have the physical and mental
abilities to act in such a working group or commission.

4.7 Role of technology

Technology can be used to contribute to the care processes and can support informal carers.
An example of technology that is being used by Eykenburg is a so-called shared digital client
record. Healthcare professionals who care for the client daily report on the clients well-being,
and now it is possible for the informal carers to log in to this digital client record from home and
read about how their relative is doing and what the healthcare professionals have reported
about the client. This technological aspect contributes significantly to the collaboration with
informal carers, because they are no longer dependent on telephone calls from the healthcare
professional to know how their relative is doing; they are always able to look up the client
record. However, other than these shared digital client records, other technological innovations
to support the informal carers who care for inpatient clients were not identified. Another
example is the use of CCTV and technology at Eykenburg. Cameras are installed throughout
the whole building cameras to supervise the corridors and entrances. All these cameras, all
emergency signals and all telephone calls are supervised by someone who is responsible for
reacting to emergency signals from the whole building and adequately responding to them 24
hours a day, 7 days a week. This worker can also contact the nurses to take action for a client
who pushes the emergency button in their room. This can reduce employment needs during
the night shifts, for instance. These are examples of technology that contributes to maintaining
or even organizing a high quality of care within the new circumstances in the long-term care
sector.

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5. Discussion
This discussion chapter will connect the literature and the two organisations that have been
researched. The similarities and differences between the two cases will also be explained and
clarified by using literature from the theoretical framework. The problem statement of this
research will be the main focus, as well as the linkages that can be made between the results
from the empirical data and the theories that were described in the theoretical framework and
the conceptual model.

5.1 Typology of informal carers within the collaboration

The empirical data showed that the professionals within both organizations assess informal
carers more as a kind of resource, fitting within the first frame of defining informal carers (Twigg
1989). Eykenburg especially uses volunteers and informal carers to replace care that in the
past was provided by healthcare assistants or nursing staff. In Argos Zorggroep the more
conventional frame of carers as resources seems to be present. This could be explained by
the fact that in the past the nursing homes did not expect much from informal carers of clients.
Another cause for this can be found in the origin of informal carers tasks within nursing homes
and the absence of organisational incentives to organize care differently than before (Argos
Zorggroep 2014, Argos Zorggroep 2015). Within Eykenburg there was a strong need for reform
because of its financial performance (Eykenburg 2014, Eykenburg 2015). This could possibly
be explained by the differences between the two organisations in terms of scale. Eykenburg is
five times smaller than Argos Zorggroep, and governmental changes in regulations could have
had a stronger impact on smaller organisations than bigger organisations. However, it can also
be argued that the initial financial circumstances of Eykenburg were worse than Argos
Zorggroep before the governmental reforms even took place. Nevertheless, this cannot be
concluded on the basis of this research.

The empirical data also show that organisations do in fact intend to assess informal carers
more as co-workers by stating that it is possible for informal carers to perform certain medical
tasks when competent or perform more general care tasks. However, in the interviews with the
healthcare professionals evidence of this co-workers frame was only found in the Eykenburg
case. Therefore, it was also the case that in Eykenburg the exploration of boundaries was
observed, because they seem to be trying to collaborate with informal carers in practice on the
base of equality within the relationship, which is an example of assessing informal carers as
co-workers (Twigg 1989). Within Argos Zorggroep such boundaries stay undefined in practice,
because there was less overlap in tasks and a clearer allocation of tasks based on a more
conventional relationship (Ward-Griffin 2003). If we relate this to the first typology of the mixed

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network, the system of who is or should be in control of the care process can be vague if the
organisation does not emphasize a collaborative relationship with carers (Ward-Griffin 2003).

Thus, if we compare the two cases with each other, the following statements can be made.
Eykenburg assesses the relationship with informal carers as more collaborative within a frame
of seeing carers as co-workers, in contrast with Argos Zorggroep, which does indeed
emphasize collaboration but seems to be stuck in the frame of using carers as resources within
a more conventional of competitive relationship (Twigg 1989, Ward-Griffin 2003). Accordingly,
for Argos Zorggroep it then becomes difficult to determine whose responsibility it is to define
the boundaries of informal care within the collaboration of formal and informal carers. Neither
organisation assesses informal carers as co-clients within a more carative relationship (Twigg
1989, Ward-Griffin 2003). The absence of this approach can cause informal carers to be
overburdened and lead to a lower appreciation of the healthcare organisation as a whole.
However, the extent to which informal carers find it appropriate to view themselves as a coworker or co-client within a carative relationship depends on the informal carer (Twigg 1989,
Ward-Griffin 2003), because informal carers have different preferences about the roles they
are willing and able to accept. For instance, an older informal carer could be more likely to be
seen as a co-client in contrast to a younger, healthy informal carer with a background in
nursing, who might prefer to be assessed as a co-worker within the care delivery for the client.
This underlines the importance of the situational context in which the informal caring takes
place, requiring flexibility from both the organisation and the healthcare professionals who are
collaborating with the informal carers. In the worst-case scenario the absence of the co-client
role may lead to the dropout of informal carers who become overburdened. This could be
disastrous within the current frame of Dutch long-term care, in which the role of informal carers
is important and will only become more so in the near future.

5.2 Linkages with actor-network theory

The linkage with actor-network theory can be described on the abstract level in the interactions
of the informal carers on the one hand and the healthcare professionals on the other hand.
Within their relationship it is clear that each actor or actant influences each other positively or
negatively, making the behaviour of both these actors crucial within the collaboration. For
example, when an informal carer who takes the initiative to perform certain actions to start an
activity for the elderly on the ward ends up receiving no response from the team of healthcare
professionals about this initiative, this may lead to distrust of the healthcare professional or the
nursing home itself. This will ultimately cause the informal carer to stop taking the initiative,
because they are not valued by the healthcare professionals. This also works the other way

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around, for instance when healthcare professionals try to contact informal carers and invite
them to do certain tasks on National Nursing Day, in order to value the work nurses and other
healthcare professionals do, and receive no response from the informal carers to come over
and participate.

Within this network of actants, the organisation can act to support the collaboration between
informal carers and healthcare professionals by giving them tools to determine boundaries in
practice or managing expectations from the different actors involved within the network.
Challenges can be identified in multiple phases of the due process model of Latour (2004),
especially in the two middle phases, consultation and hierarchy. Informal carers are often not
well consulted within the care trajectory and are not incorporated into the hierarchy within the
healthcare organisation. Thus, when the cases are compared, both organisations have shown
elements of the process model of Latour (2004). However, at Eykenburg this was clearer
because they enact this relationship within the collaboration more in practice than Argos
Zorggroep.

5.3 Motives of informal carers

The theoretical model of Le Grand (2003) can be applied to the actors within the collaboration
between informal carers and healthcare professionals. The assumption that the healthcare
professional is a knave who is only interested in protecting their domain, income or status is
only partly existent. The healthcare professionals in this research protect their professional
domain by declaring that some care tasks simply must be executed by healthcare
professionals. Informal carers agree upon the fact that certain tasks belong to the healthcare
professionals rather than to the informal carers. They expect that healthcare professionals
perform care tasks for which the informal carers are not well educated or trained. However,
both the healthcare professionals as the informal carers should be seen as knights, because
the empirical evidence show that both parties are pursuing the same goal from their own
perspective, namely the best care for the client.

The difference between these two actors is primarily seen on the y-scale of Le Grands (2003)
model; the healthcare professional can be seen as a queen that has a significant amount of
power within the situational context (e.g. constructing care living plans, much direct contact
with the client, power within the professional and organisational context) and the informal carer
can be described as a pawn (e.g. a layman within the professional domain, dependant on the
inpatient care performed by the healthcare professional) that does not have as much power as
the healthcare professional to influence or steer the client care process. In the ideal situation

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the power of the informal carer becomes more equal to that of the healthcare professional.
This is observed somewhat at Eykenburg, although healthcare professionals remain dominant
within the residential care home. If informal carers are valued as important and powerful actors
within the network, then they are able and more likely to play their part with vigour in the
trajectory of the client care process. Within Argos Zorggroep the informal carers felt
overpowered by the healthcare professionals.

In summary, the following can be concluded about the motives of informal carers. The informal
carers that were interviewed for this study had strong motives to care, but defined their motives
for caring for their relative as normal and not as an obligation. Moreover, informal carers could
be assessed as strongly intrinsically motivated to fulfil a caring role within the care delivery for
the client.

5.4 Expectations of informal carers

To design a collaboration between healthcare professionals and informal carers that adds
value to the client trajectory, reciprocal expectations of healthcare professionals and informal
carers should be operationalized in practice. Both organisations strive to manage expectations
and describe the management of expectations of informal carers in their policy plans. However,
in practice these expectations often remain opaque, leading to expectations from the
organisation about the informal carers that cannot be met or expectations from informal carers
about the organisation that lead to the disappointment of the informal carer, resulting in the
informal carers decreased view of the nursing home. The uniqueness of situational contexts
prevents these expectations from being generally described within policy plans or protocols.
However, even if it is difficult to describe or prescribe the expectations of informal carers in
general, the importance of managing these expectations cannot be underestimated. Both
organisations try to manage their expectations of informal carers but fall short on this, because
in the interviews it became clear that expectations are often unclear and undefined in practice.
Certainly, given that nursing homes are still facing the consequences of the recent transition
in long-term care, which have led to a stronger focus on and changing role for informal carers,
the expectations of informal carers should be operationalized and continuously evaluated,
because reciprocal expectations strongly influence the collaboration between healthcare
professionals and informal carers (Latour 2004, Le Grand 2003, Twigg 1989, Ward-Griffin
2003).

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5.5 Advantages and limitations of the study design

An advantage of this study design is that it makes use of data triangulation by using different
methods and sources of data collection: using policy documents, qualitative data through
interviews and attending a focus group where informal carers were invited to talk openly about
their experiences. Another advantage of this study is that three senior researchers of the SCP
with a strong background in informal carer research critically co-read this study and gave
intermediate feedback on the research proposal as well as the results section.

This research has also certain limitations. First, the external validity of this research is limited,
because there were only two nursing homes involved in the study in different contexts. Second,
within the two organisations only a few people were interviewed. This can lead to a limited view
of the real-world situation. Furthermore, the informal carers that were interviewed varied in age
and physical health, making it difficult to speak generally about informal carers as a group. The
limitations concerning the number of respondents could be overcome in the future by
increasing the number of respondents or only selecting one case instead of two. Third, the
client was not included within interviews. This was difficult to manage, due to various factors
mainly concerning difficulties with planning interviews due to the clients health status.

5.6 Future research

In future research more needs to be known about the motives of health care professionals and
informal carers, because this research showed that motives partly influence the behaviour of
the actors in the collaboration. If these motivates are furtherly described, they might help to
define the collaboration itself better. Especially the motives of the health care professionals
are little exposed in this research. In future research the dividing line between informal carers
and volunteers could also be examined. In this research it became clear that there is an overlap
between informal carers and volunteers, implying that the motives of informal carers overlap
with the motives of volunteers. However, there may be reasons why informal carers are more
likely to sign up as volunteers within nursing homes. Since the findings illustrate the importance
of the expectations of informal carers, future research should focus more on the underlying
expectations that actors involved with informal care have towards each other, as well as the
coordination with other actors in the informal care sector, such as volunteers. Finally, to
measure patient-centredness and impact of informal care it may be helpful to focus on clients
by including them in the study.

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6. Conclusion
In this chapter the main research question will be answered, making use of the formulated subquestions. Recommendations will be given at the end of this chapter.

6.1 Sub-question 1
How do health care professionals, clients and informal carers evaluate their relationship
with the other actors within the collaboration?
The strong emphasis on the collaboration is clear within both organisations (Argos Zorggroep
2013, Eykenburg 2016). Both they acknowledge the important role of informal carers, caused
by governmental changes that defined the participation society. This gave both nursing homes
also the chance to reorganise care under the guise of budget cuts. The management also
acknowledge the important role of managing expectations within the collaboration (Ayres
2000). Although Eykenburg provided examples about the content of informal caring, what is
concretely expected in the relationship between the organisation and the informal carer and
what the boundaries of informal care entail remain rather opaque. However, both organisations
evaluate the collaboration with informal carers as important because the organisations need
them within the care delivery. For Eykenburg it has become practically impossible for the
organisation to deliver good care to the inpatient client, if the informal carer is not present in
the collaboration. In contrast, the healthcare manager at Argos Zorggroep stated that informal
carers are becoming more important, but are still not a crucial part of the care delivery itself.
The healthcare professionals evaluate the coordination with the informal carers rather
positively, mentioning that it is possible to create an open conversation with the informal carers
and that they are easily approachable if informal carers would like to contact them. However,
there were only a few cases in which a genuine collaboration, as explained by the theories of
carers, was observed (Twigg 1989, Ward-Griffin 2013). From the healthcare professionals
perspective, informal carers are needed when formulating the annual health living plan of the
client, and also are motivated to give input for the multidisciplinary meetings but are often not
present at such meetings. This input is a prime example of using informal carers as a resource
within a conventional relationship (Twigg 1989, Ward-Griffin 2013). The informal carers
themselves are in general positive about the coordination between themselves and healthcare
professionals. However, they also mentioned shortcomings within the coordination, concerning
primarily three issues: patient-centred delivery of care to the client, neglected initiatives of
informal carers and the lack of communication about activities in the organisation. At Argos
Zorggroep the informal carers also mentioned the shortcoming of access to the digital client
record that is, in comparison, deployed at Eykenburg.

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6.2 Sub-question 2
Which characteristics can be described within the collaboration between professionals
and informal carers?
The collaboration between healthcare professionals and informal carers is not often a
collaboration in the sense that they are both physically working together; rather, it is often a
process of tuning, aligning and communicating about tasks that informal carers can perform
within the client trajectory. On the level of the relationship itself, theoretically there are four
types of relationships between healthcare professionals and informal carers that are visible in
the data (Ward-Griffin 2003). The three frames of Twigg (1989) can also be related to the
results found, in which two of the three frames were observed in both cases. More precisely,
there was evidence for the carers-as-resource frame at Argos Zorggroep. However, the frame
of carers as co-workers was most dominant.

The definition of the relationship itself also relates to the way the healthcare professionals and
informal carers deal with each other. At Argos Zorggroep it became clear that informal carers
felt overpowered by healthcare professionals and were not always taken seriously. At
Eykenburg informal carers feeling varied among respondents, but they vacillated between
defining the relationship as competitive and collaborative. At Eykenburg the conventional
relationship is found only in the heads of informal carers who have not yet been introduced to
the new participation society. Therefore, at intake the nursing home informs the clients and the
informal carers honestly about the expectations of informal care within the nursing home. The
tasks of informal carers can be health-related or more supportive tasks, and within this
collaboration the uniqueness of the situational context is an important driver in aligning the
types of tasks with the informal carer.

It became clear that both actors within the collaboration vary in interpersonal characteristics.
There is variation in the former work experience healthcare professionals have had with
informal carers, which influences their collaboration with informal carers. Additionally, the
educational level of the healthcare professional influences the extent to which the professional
can collaborate with the informal carer. On the other hand, informal carers have different
characteristics in terms of age, health status and marital status, influencing their ability to
perform tasks within the client trajectory.

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An important characteristic of the collaboration between professionals and informal carers is

dependency. The nursing homes are to a certain extent dependent on the tasks informal carers
perform. Additionally, this dependency can relate to the power of the actors within the
collaboration, as described by Le Grand (2003). It can be argued that informal carers became
more powerful, because the organisations are more dependent from them. However,
healthcare professionals reject this idea, arguing that care delivery will always take place. From
the informal carers perspective, dependency can be described in the sense that they will
always be involved in the clients trajectory and will continue to try to interfere with care delivery
in order to ensure that their relative is receiving the best care possible, even when the informal
carers have negative experiences with the collaboration or communication with the healthcare
professionals or the nursing home. This dependency can be an important characteristic of the
collaborative relationship within the frame of defining informal carers as co-workers (Twigg
1989, Ward-Griffin 2003).

Finally, a main characteristic of the collaboration between healthcare professionals and

informal carers in both organisations is that the collaboration between them is somewhat novel
and tentative at this moment in time. Both actors must get used to this idea of collaboration, in
the sense that both the informal carer and the healthcare professional must be more conscious
of the fact that the collaboration between them could create value for the client, but also that a
relationship between the two parties must be articulated in order to succeed (Postma et al.
2014). For healthcare professionals this articulation may be easier to enact in practice in
comparison to informal carers, because articulation traditionally lies at the heart of
professionalism (ibid.). However, this articulation is not static and acquires new meaning
because of changing organisational conditions and government reforms (ibid.). Within the
relationship between healthcare professionals and informal carers, reciprocal expectations
should be clear and be expressed to the other actor in order to discuss and communicate the
content of the tasks. Thus, when expectations are expressed within the relationship they
become concrete and tangible, and the boundaries of the professional domain and the
boundaries of the informal carers domain also become apparent. This underlines the
importance of managing the expectations of informal carers as well as determining the nature
of the tasks they can perform to contribute to care delivery for the client.

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6.3 Sub-question 3
How do the nursing home management and staff evaluate the role of informal carers
within the organisation?
Both nursing homes acknowledge the important role of informal carers and the need for
collaboration between formal and informal care. Such a role for informal carers is relatively
new in long-term care, because in the past families of clients were not asked to perform tasks
within the organisation. This has led to another definition of informal carers and volunteers at
Eykenburg (Eykenburg 2013; 2014). Eykenburg created a new framework to categorize
healthcare professionals, informal carers and volunteers into two groups: paid professionals
and unpaid professionals. The paid professionals group consists mainly of healthcare
professionals. The unpaid professionals group consists of the volunteers in the organisation
and the informal carers who are involved with the clients. This changing perspective is a culture
change within the organisation that defines informal carers differently than before. In contrast,
Argos Zorggroep has not made this distinction between paid and unpaid professionals.
However, they identified different roles for informal carers than volunteers. The way the nursing
homes approached informal carers strongly influenced their satisfaction and valuation of the
nursing home itself. The language and assessment of informal carers is therefore an important
cause of inconvenience within their relationship with health care professionals.

In both organisations the challenges involved with this new role of informal carers are identified;
they concern not only the boundaries of the professional domain but also the embedding of
this new notion of informal carers into the systems of healthcare professionals. In summary,
this challenge is one that consists of implementing the understanding that expectations of
informal carers have shifted over time, due to governmental reforms through legislation and
financing. Eykenburg has acted upon this challenge more than Argos Zorggroep. However,
both nursing home management teams recognized the importance of specifying the tasks for
informal carers and defining the boundaries in concrete cases in the near future.

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6.4 Sub-question 4
What opportunities and pitfalls can be distinguished in the future development of the
collaboration with informal carers?
First, technology can support the relationship between healthcare professionals and informal
carers. Sharing the digital client record with informal carers led to carers higher satisfaction at
Eykenburg. Within the near future it also will become possible for informal carers to comment
in the digital client record or even report on the client themselves. This kind of participation can
lead to higher commitment among informal carers and mutual appreciation that can benefit the
nature and reciprocal evaluation and valuation of the relationship between informal care and
formal care. Additionally, tailoring the support of the informal carers to individual contexts and
demands can be a future opportunity for nursing homes, because patient-centredness within
long-term care takes time to develop and therefore needs specific attention. By individually
assessing the abilities of the informal carer the organisation gives the informal carers and
healthcare professionals the chance to negotiate the boundaries and tasks that are allocated
between them. A prescriptive policy from top-down could undermine the motivations of the
informal carers, ultimately leading to carers that show less initiative or have lower opinions of
the organisation. Therefore, these should not be implemented as top-down initiatives; rather,
there should be a framework in which healthcare professionals and informal carers help to
determine the boundaries and allocate tasks among themselves. The ultimate goal is to create
an environment in which informal carers feel valued for the tasks they perform and where the
collaboration between informal carers and healthcare professionals creates value for the client.

Possible pitfalls are that the nursing home undermines the different expectations that informal
carers have about it. In addition, the expectations that informal carers have for the organisation
should be managed by the nursing home, because such expectations can be out-dated and
unrealistic due to the recent government reforms that have had consequences for nursing
homes. Another pitfall in the collaboration is that healthcare professionals in residential care
are not used to notice or prevent the overburdening of informal carers, in contrast to healthcare
professionals in home care. In general, nursing homes should also focus more on policy to
prevent informal carers who support the client within the nursing home from becoming
overburdened.

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6.5 Main research question

What characteristics influence the collaboration between healthcare professionals and
informal carers in nursing homes, and how is this collaboration evaluated?
Within this collaboration, motives, organisational context and support, attitudes and the power
of informal carers are influential factors in the behaviour of the informal carers. The behaviour
of healthcare professionals is also dependent on these factors, in addition to their earlier
working experiences. The empirical data show two influential factors not displayed in the
conceptual model: reciprocal expectations and the characteristics of informal carers.
The first concerns the expectations that healthcare professionals and informal carers have
towards each other that can be captured within a frame of carers roles (Twigg 1989, WardGriffin 2003). The expectations include the boundaries and the operationalization of tasks that
informal carers perform. The changing perspective of assessing informal carers contributes to
creating expectations for this new role for informal carers that contrast with their role in the
past at Eykenburg. At Argos Zorggroep this changing perspective is less visible. The reciprocal
expectations of healthcare professionals and informal carers influence the collaboration, and
unclear or unrealistic expectations can negatively influence the collaboration (Callon & Latour
1981, Latour 2003).

Second, informal carers also have different characteristics in terms of age, health status and
marital status, which influences their ability to perform tasks within the client trajectory.
Additionally, the educational level of the healthcare professional is a characteristic that
influences the extent to which the healthcare professional can collaborate with the informal
carer. Highly educated healthcare professionals are better trained to collaborate with informal
carers and to negotiate with them about their role. The way the actors interact within their
relationship also influences the collaboration between healthcare professionals and informal
carers. It is clear that actors influence each other positively or negatively, making the behaviour
of both actors crucial within the collaboration (Callon & Latour 1981, Latour 2003). The
collaboration between healthcare professionals and informal carers is furthermore influenced
by the boundaries of the two groups, which are better operationalized at Eykenburg than at
Argos Zorggroep, leading to higher satisfaction among informal carers at Eykenburg.
Unfortunately, it is not possible to describe clear boundaries of informal care versus formal
care based on this study, because the boundaries vary with the unique situational contexts of
each informal carer and client. However, this can also be evaluated as a challenge for
healthcare professionals and informal carers to determine the boundaries in practice, leading
to a situation in healthcare professionals and informal carers are primarily responsible for
interpretation of informal care within the nursing home.

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6.6 Recommendations
For healthcare professionals and informal carers it is crucial to determine how the collaboration
should be designed in practice and what the actors can expect from each other. This could
take place in a new working group in which healthcare professionals and informal carers work
together to explore the possible boundaries of care, with the aim of defining the roles of
informal carers within their relationships with healthcare professionals. During this working
groups also cultural and moral challenges could be discussed. Internal education could also
focus more on the collaboration with informal carers. The demands of informal carers should
also be extracted, with the aim of supporting informal carers. That can contribute the
collaboration itself and the quality of care delivered to the client.

An important challenge for the health care professionals is to coordinate individually with
informal carers about possible tasks and to negotiate with them about it. The primary nurse is
preferably suitable to initiate this coordination. The nursing homes management could also
support healthcare professionals by providing tools that support them in assessing the informal
carer and that can help them negotiate with them, with the aim of creating an environment in
which they are able to debate with informal carers about the tasks that they could perform.
However, the management or healthcare professionals cannot provide the boundaries
themselves, because every situation is unique within its context and should be assessed by
involved actors. Informal carers should therefore always be included in the process of
allocating tasks and within the process of defining their role within the clients care delivery.

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Appendices
Appendix A:

Topic list

Appendix B:

Codes

Appendix C:

Overview cases

Appendix D:

List of abbreviations

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Appendix A: Topic list

Vragenlijst 1: Functie Beleidsmedewerker/Kwaliteitsfunctionaris/Manager
Algemeen
1. Kunt u me iets vertellen over de organisatie en het zorgaanbod van de organisatie?
2. Wat is uw functie binnen de organisatie?
3. Welke taken behoren bij uw functie?
4. Welk aspect staat er met betrekking tot mantelzorg hoog op uw agenda?
5. Wat is de missie en visie van de organisatie? Hoe staat deze in relatie tot de
samenwerking van professionals met mantelzorgers?
Beleid organisatie mantelzorg
1. Wat is het huidige organisatiebeleid met betrekking tot mantelzorgers in het algemeen? Is
deze rol altijd al zo geweest?
2. Is er beleid ingericht om te mantelzorger te betrekken bij het zorgtraject van de clint?
Wordt mantelzorger momenteel in het huidige zorgtraject betrokken? Zo ja, in welke mate?
Zo ja, hoe is dit beleid gemplementeerd in de praktijk, wat ging er goed/minder goed? Zo
nee, waarom niet?
3. Is er beleid ingericht om de zorgprofessionals te ondersteunen in het omgaan met
mantelzorgers? Hierbij denken aan trainingen, cursussen, intervisie, etc.
4. Worden momenteel de zorgprofessionals door de organisatie opgeleid/getraind om
mantelzorgers te ondersteunen binnen het zorgtraject? Zo ja, Voorbeeld? Zo nee, waarom
niet?
5. Worden momenteel mantelzorgers ondersteund door de organisatie, zo ja op welke
manier? Zo nee, waarom niet? Vinden er andere activiteiten plaats voor mantelzorgers? Zo
ja, wat is de insteek hiervan? (welk doel dient dit) Wie zouden er eigenlijk mantelzorgers
moeten ondersteunen? Zijn er andere partijen die mantelzorgers zouden moeten
ondersteunen? Zo ja, wie zijn dit, wat zouden zij kunnen doen? Is er een samenwerking
tussen deze partijen?
6. Is het voor de verplicht voor de clint om zijn of haar eigen netwerk aan te spreken/ te
onderzoeken? Is dit ingebed in beleid?
7. Hoe afhankelijk is de organisatie van mantelzorgers? Is dat goed of slecht? Hoe kijkt de
organisatie hiernaar? Uitdagingen?
8. Wat zijn nou typisch problemen waar de organisatie tegen aanloopt als het gaat om de
samenwerking tussen professionals en mantelzorgers? Kunt u daar een voorbeeld van
geven?

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Verbetering samenwerking
9. Heeft de organisatie innovatief beleid of innovaties gebruikt om mantelzorgers te
ondersteunen of mantelzorgers in het algemeen bij het zorgtraject te betrekken? Wat zijn
voorbeelden van good practices binnen de organisatie? Voorbeeld? Wat zijn succes- of juist
leerpunten hiervan?
10. Wat levert de samenwerking tussen mantelzorgers en professionals momenteel op? Wat
zou de samenwerking tussen mantelzorgers en professionals in potentie op kunnen
leveren? (Bijvoorbeeld: Hoe ziet het ideaalbeeld er over 5 jaar uit? Wat is hier voor nodig?
Welke partijen spelen daarin een rol?

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Vragenlijst 2 Functie: Professional (Niveau 3/Niveau 4)

Algemeen
1. Wat is uw functie binnen de organisatie?
2. Welke taken behoren bij uw functie?
3. Welk aspect staat er met betrekking tot mantelzorg hoog op uw agenda?
4. Wat is de werkwijze van de organisatie? Hoe staat deze in relatie tot de samenwerking
van professionals met mantelzorgers?
Netwerken van formele en informele zorg
1. Wordt mantelzorger momenteel in het huidige zorgtraject betrokken? Zo ja, in welke
mate?
2. Hoe kan de samenwerking tussen formele zorg (zorg in het verpleeghuis) en informele
zorg (inzet van mantelzorger / vrijwilliger) worden beschreven? Is deze globaal hetzelfde of
bestaan er grote verschillen?
3. Hoe staat mantelzorg in verhouding tot professionele zorg binnen het verpleeghuis? Hoe
kijkt u als zorgprofessionals hiernaar?
4. Hoe kan de interactie tussen meer formele en informele zorg worden omschreven? Is er
sprake van een hirarchie, is er sprake van machtsverhoudingen, loyaliteit,
afhankelijkheden?
Samenwerking met mantelzorgers
1. Als een zorgprofessional, wat voor taken doet u precies? Hoe ziet u daarin de
samenwerking met mantelzorgers, die geen zorgachtergrond hebben?
2. Is er overleg/contact met de mantelzorgers? Wat is de aanleiding hiervoor? Hoe vaak
vindt dit plaats? Wat is de inhoud van deze gesprekken? Welke aard heeft het gesprek?
3. In welke rol ziet u de mantelzorger: als ondersteuner / collega - hulpvrager / schaduwclint
- naaste - expert)? Ook Twigg (roles of informal carers) Waarom ziet u dit zo, voorbeeld?
4. Hoe (goed) bent u als zorgprofessional opgeleid om samen te werken met mantelzorgers
in de verpleeghuis setting? Heeft u bijvoorbeeld genoeg tijd om te investeren in de relatie
met de mantelzorger? Heeft u behoefte aan meer training om samen te werken met
mantelzorgers?
5. Wat vindt u positief aan de samenwerking die u heeft met mantelzorgers? Voorbeeld?
Wat vindt u minder goed aan de samenwerking die u heeft met mantelzorgers? Voorbeeld
7. Hoe afhankelijk is de organisatie eigenlijk van mantelzorgers? Is dit goed/slecht?
8. Hoe kijkt u zelf naar de samenwerking met mantelzorgers in de praktijk? Wat zou er beter
kunnen? Waar ligt dit aan? Wat is hiervoor nodig? Waarom is dit zo?

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Verbetering samenwerking
1. Wat gaat er nu bovengemiddeld goed als het gaat om de samenwerking tussen
mantelzorgers? Wat is nou typisch iets wat een goed voorbeeld is van de succesvolle
samenwerking tussen mantelzorger en zorgprofessional? Hoe is dit tot stand gekomen? Wat
zijn succesfactoren hiervan?
2. Wat zou u als zorgprofessional nodig hebben om de relatie tussen mantelzorger en u nog
verder te verbeteren? Wat zijn mogelijke valkuilen voor de organisatie?

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Vragenlijst 3 Functie: Mantelzorger

Algemeen
1. Kunt u iets over uzelf vertellen? Voor wie zorgt u? Wat is de achtergrond / motivatie van
de mantelzorger? NB: Niet letterlijk vragen, bij partner logisch, wel verder uitdiepen
2. Welke taken behoren volgens u tot die van een goede mantelzorger? Waarom?
3. Wat is de werkwijze van de organisatie als het gaat om de ondersteuning van informele
zorg? Wat vindt u daarvan?
Samenwerking met professionals
1. Wat voor taken doet u precies? Hoe ziet u daarin de samenwerking met
zorgprofessionals?
2. Beslist u ook mee of adviseert u over het zorgtraject? (ondersteuning clint)
3. Wanneer kan men praten dat er goede zorg wordt geleverd, als het gaat om het
samenwerken met mantelzorgers?
4. Hoe kijken zorgprofessionals naar u? (roles of informal carers, SOFA-model) Waarom?
5. Hoe afhankelijk is de organisatie van mantelzorgers? Is dat goed/slecht? Waarom?
6. Bent u wel eens overbelast of in het verleden overbelast geweest? Neemt de belasting nu
toe of af? Waardoor komt dit?
7. Wat vindt u positief aan de samenwerking die u heeft met zorgprofessionals? Voorbeeld?
Wat vindt u minder goed aan de samenwerking die u heeft met zorgprofessionals?
Voorbeeld
8. Wordt u door de organisatie of door de zorgprofessional ondersteund? Zo ja, hoe? Wat
vindt u hiervan? Zou u meer/minder willen worden ondersteund door de zorgprofessional/de
organisatie? Wat zou de aard van de gewenste ondersteuning moeten zijn (gezelligheid met
andere mantelzorgers, uitwisselen ervaringen, educatie, meer leren over ziektebeelden,
etc.)?
9. Hoe kijkt u zelf naar uw rol in het zorgproces? Hoe heeft u zichzelf ontwikkeld?
Verbetering samenwerking
1. Wat zou u nodig hebben om de relatie tussen u en de zorgprofessional nog verder te
verbeteren? Hoe heeft dit effect op het zorgtraject van de client? Wat zijn mogelijke
valkuilen, denkt u?
2. Als u de organisatie een tip zou mogen geven ten aanzien van het mantelzorgbeleid, wat
zou dat dan zijn?

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Appendix B: Codes
Perspective

Codes

Organisational perspective

01

Budget cuts transition

02

New role of informal carer

03

Expectations of informal carers

04

Support of informal carers

05

Dependency of informal carers

06

Tasks of health care professionals

07

Expectations of informal carers

08

Overburdening of health care professionals

09

Support and education of health care professionals

10

Defining informal carers

11

Motives of informal carers

12

Tasks of informal carers

13

Overburdening of informal carers

14

Desires of informal carers

15

Variation between individual health care

Professionals perspective

Informal carers perspective

Multidisciplinary perspective

professionals
16

Uniqueness of situational context

17

Expectations of informal carers

18

Getting used to collaboration

19

Boundaries professional care and informal care

20

Future of informal carers

21

Role of technology

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Appendix C: Overview cases

Argos Zorggroep 2015

Main data about the financial year (2015)

Clients/capacity
Number of residential clients within financial
year

Numbers or money (in )

Number of factual residential placements on 31

December
Number of extramural patients

1.421

Number of clients on daily activities on 31

December
Number of hours spent on extramural production
within financial year
Number of residential days lowly indicated
clients within financial year
Number of residential days highly indicated
clients within financial year
Personnel

300

Number of paid employed personnel on 31

December

2.124

Number of FTE employed personnel on 31

December
Operating income
Total revenue within financial year
Whose legal budget for acceptable costs
Whose DBC revenues
Whose subsidy frontlines revenues
Whose WMO revenues
Whose revenues from extramural district nursing
Whose other not specified revenues
Financial
Liquidity (current ratio)
Solvability (equity / balance sheet total)
Solvability (equity / total revenues)
Equity
Profit/loss within financial year

1.512

1.285

444

103.076
78.163
360.001

115.074.018
92.105.146
6.352.689
3.659.885
3.187.258
3.062.294
4.715.409
1.26
25,90 %
31,38 %
35.486.384
1.921.820

(2014: 24,37 %)
(2014: 30,84 %)
(2014: 33.564.564)
(2014: 856.860)
Source: Argos Zorggroep (2015)

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Eykenburg 2015

Main data about the financial year (2015)

Clients/capacity
Number of residential clients within financial
year
Number of factual residential placements on 31
December
Number of extramural patients
Number of clients on daily activities on 31
December
Number of hours spent on extramural production
within financial year
Number of residential days lowly indicated
clients within financial year
Number of residential days highly indicated
clients within financial year
Personnel

Numbers or money (in )

Number of paid employed personnel on 31

December
Number of FTE employed personnel on 31
December
Operating income
Total revenue within financial year
Whose legal budget for acceptable costs
Whose other not specified revenues
Financial
Liquidity (current ratio)
Solvability (equity / balance sheet total)
Solvability (equity / total revenues)
Equity
Profit/loss within financial year

415

420
240
1.225
33
147.261
21.538
50.031

290.2

21.133.660
20.611.743
521.917
3.00
16.39%
24.51%
5.172.514
209.113

(2014: 14.99%)
(2014: 24.28%)
(2014: 4.963.498)
(2014: -2.314.970)
Source: Eykenburg (2015)

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Appendix D: List of abbreviations

ADL

Algemene dagelijkse levensverrichtingen

ANT

Actor-Network Theory

AWBZ

Algemene Wet Bijzondere Ziektekosten

CCTV

Closed-circuit television

EVV

Eerste Verantwoordelijke Verzorgende

FTE

Fulltime-equivalent

MDO

Multidisciplinair overleg

SCP

Sociaal Cultureel Planbureau

WLZ

Wet Langdurige Zorg

WMO

Wet Maatschappelijke Ondersteuning

Zvw

Zorgverzekeringswet

ZZP

Zelfstandige Zonder Personeel

ZZP

Zorg Zwaarte Pakket

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