Deconstructing the Self-Other Binary in Care Networks by Unravelling Professional’ Perspectives through an Intersectional Lens

Abstract

In many western countries informal care is conceived as the answer to the increasing care demand. Little is known how formal and informal caregivers collaborate in the context of an diverse ageing population. The aim of this study was to gain insight in how professionals’ perspectives regarding the collaboration with informal carers with a migration background are framed and shaped by intersecting aspects of diversity. We used an intersectionality informed qualitative design with informal conversations (N = 12) and semi-structured interviews (N = 17) with healthcare professionals working with clients with Acquired Brain Injury. Two critical friends were involved in the analysis which was substantiated by a participatory analysis with a community of practice. We identified four interrelated themes: (a) ‘The difficult Other’ in which professionals reflected on carers with a migration background causing ‘difficulties’; (b) ‘The dependent Other’ refers to professionals’ realization that ‘difficulties’ are intensified by the context in which care takes place; (c) in ‘The uncomfortable self’ professionals describe how feelings of insecurities evoked by the Other are associated with an inability to act ‘professionally’, and; (d) ‘The reflexive self’ shows how some professionals reflect on their own identities and identify their blind spots in collaboration within a care network. These themes demonstrate the tensions, biases and power imbalances between carers and professionals, which may explain some of the existing health disparities perpetuated through care networks.

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Health Care Analysis
https://doi.org/10.1007/s10728-024-00504-z
ORIGINAL ARTICLE
Deconstructing theSelf‑Other Binary inCare
Networks byUnravelling Professional’ Perspectives
throughanIntersectional Lens
AldieneHenriekeHengelaar1,2 · MargovanHartingsveldt2· TinekeAbma3·
PetraVerdonk1
Accepted: 27 November 2024
© The Author(s) 2025
Abstract
In many western countries informal care is conceived as the answer to the increas-
ing care demand. Little is known how formal and informal caregivers collaborate
in the context of an diverse ageing population. The aim of this study was to gain
insight in how professionals’ perspectives regarding the collaboration with informal
carers with a migration background are framed and shaped by intersecting aspects
of diversity. We used an intersectionality informed qualitative design with infor-
mal conversations (N = 12) and semi-structured interviews (N = 17) with healthcare
professionals working with clients with Acquired Brain Injury. Two critical friends
were involved in the analysis which was substantiated by a participatory analysis
with a community of practice. We identified four interrelated themes: (a) ‘The dif-
ficult Other’ in which professionals reflected on carers with a migration background
causing ‘difficulties’; (b) ‘The dependent Other’ refers to professionals’ realization
that ‘difficulties’ are intensified by the context in which care takes place; (c) in ‘The
uncomfortable self’ professionals describe how feelings of insecurities evoked by the
Other are associated with an inability to act ‘professionally’, and; (d) ‘The reflexive
self’ shows how some professionals reflect on their own identities and identify their
blind spots in collaboration within a care network. These themes demonstrate the
tensions, biases and power imbalances between carers and professionals, which may
explain some of the existing health disparities perpetuated through care networks.
Keywords Intersectionality· Care networks· Informal carers· Collaboration·
Acquired brain injury
Extended author information available on the last page of the article
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Health Care Analysis
Introduction
In many western countries the informal carers are considered essential to face
the increasing demand of care in an ageing population [33]. Informal care refers
to carers who in contrast to professional- or formal carers belong to the existing
social network of the care recipient, e.g. family, friends and/or neighbors, and
provide unpaid care to someone with long-term health and/or welfare needs. The
context of this study is the Netherlands, where the numbers of carers has risen
to 5.5million in 2019 due to the changes in health policies by strengthening the
focus on the self-reliance of citizens and their social networks ([12], p.7). Infor-
mal care often occurs within larger care networks in which collaboration with dif-
ferent professionals is necessary, referring to care in the home context as well as
within institutional settings. In the Netherlands, carers often reside in the inmost
layer of these care networks together with the care recipient. Due to rising health-
care costs, an aging society, and austerity measures within the Dutch healthcare
system, there is a growing need for informal care [16]. Even though the provi-
sion of informal care can be a positive experience for carers, the hyper-focus on
informal care often ignores carers’ potential overload and pressure on their labor
participation as well as safety risks and lower standards of care [12] currently,
one out of ten feels overburdened [9].
The existing literature on the collaboration between professionals and infor-
mal carers in diverse networks shows that a ‘partnership approach’ contributes
to quality care within care networks and to the wellbeing of informal carers [29].
This requires an open dialogue between all actors, about the mutual understand-
ing of expectations and assumptions regarding collaboration, roles and needs.
However, such partnerships can be difficult to achieve in practice due to the com-
plex contexts surrounding the collaboration and a lack of awareness about the
role that underlying intersecting aspects of diversity play in shaping expectations
and assumptions within care networks [31]. Aspects of diversity such as gender,
age, ability, religion, culture, geography, ethnicity, education level, socioeco-
nomic status simultaneously and in interaction shape everyday experiences and
further complicate the collaboration between professionals and informal carers in
diverse care networks [18].
In this study, we focused on professionals’ experiences of collaborating with
carers who migrated to the Netherlands and act as a proxy for their care recipi-
ents with acquired brain injury. Migration to the Netherlands has been shaped by
the country’s colonial history, economic factors such as labor migration, as well
as by political choices and public policies [36]. Carers with a migration back-
ground cannot be categorized as one homogeneous group and multiple within
group difference exist—their backgrounds may be European or from other conti-
nents with differing ethnicities, educational levels may vary as well as for exam-
ple religious affiliation or income level. They do share higher risks of discrimi-
nation in society as well as within health care settings. Our earlier study showed
that carers experienced a sense of injustice after experiences of discrimination,
leading to unmet needs of care recipients and carers themselves, and a loss of
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Health Care Analysis
trust in healthcare professionals [30]. Additionally when zooming in on this col-
laboration it can be seen that carers with a migration background report lower
levels of wellbeing when they are misunderstood within care situations or when
they encounter racism within care networks [40]. According to Shepherd etal.
[49] different studies in the field of public health indicate that particular cultural
groups are often underserved, experience negative treatment and/or treatment
outcomes (p. 2). There is a need to further understand the contextual nature of
this process [41], as professionals’ perspective on their collaboration with carers
with a migration background is largely understudied [31].
There are indications that these negative experiences and outcomes of the
care for people with a migration background and informal carers are related
to the context and social position of professionals. Claeys etal. [19] show, for
instance, that professionals take their own frame of reference as a starting point
during care planning and often encounter difficulties empathizing with other
frames of reference. This might stem from the fact that professionals sometimes
experience dealing with diversity as stressful [17] and often find it easier to pro-
vide care to someone who has a similar background [43]. Berdai Chaouni [10]
adds that professionals caring for people with a migration background appear to
do so in a rather ethnocentric and essentialist context and are often unaware of
the complex reality of care. This results in increased informal care burden and
might contribute to ineffective care in care networks (p.8). This phenomenon
can be explained by professionals’ positionality in that specific care situation,
showing the impact of personal and professional identities in a specific situation,
based on for example age, gender, and professional training [54]. An analysis of
positionality can show how personal and professional identities influence and
potentially bias or strengthen their understanding of the collaboration [44] and
provide insight in how unconscious bias might create unfair systems of power in
care networks [40].
This study aims to explore diverse professional perspectives on and experi-
ences in collaboration with carers with a migration background in care networks
around care recipients with acquired brain injury ABI in order to expose aspects
of power and injustice in care networks. We deliberately chose to focus on pro-
fessionals working in care networks around a care recipient with acquired brain
injury (ABI)—the leading cause of disability worldwide [48]—because care
recipients with ABI require long-term complex care, provided at home where
care networks often consist of different professionals [4]. This study is part of
a larger research project where the experiences with the collaboration in care
networks is central and the perspectives of professionals, informal carers and
care recipients are explored. The stories of informal carers and care recipients
are of equal importance and will be featured in two different studies. We focus
here on the perspectives of professionals. Our study builds further on the notion
that the social position of professionals influences the collaboration with infor-
mal carers, and aims to explore the experiences of professionals in ‘diverse’ care
networks by explicitly paying attention to how systems of power play a role in
these care networks [6].
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Health Care Analysis
Theoretical Background
To understand professionals’ perspectives within diverse care networks, it is
essential to gain insight in how their perspectives are framed and shaped by inter-
secting aspects of diversity as well as situational and contextual factors [54].
Within public health there is a longstanding commitment to understand how indi-
vidual and structural identities, characteristics and patterns shape health and well-
being [38]. Social categories and structures as well as individual identities create
the conditions in which people live and influence their health and well-being [45].
An intersectionality approach, originally coined by black feminist legal scholar
Kimberley Crenshaw, may offer insight in the interactions between the various
aspects of diversity and (dis)advantage in individual lives, social practices, insti-
tutional arrangements, cultural ideologies and the outcomes of these interactions
in terms of power, social inequities and health disparities [27, 28]. This study
does not solely focus on cultural aspects or differences, but goes a step further
to explore the influence of the multiple intersecting aspects of diversity in the
context of care networks. The intersectionality lens helps to embrace rather than
obscure the heterogeneity of peoples lived experiences [13] and serves as a criti-
cal praxis focusing on (in)equality and social (in)justice in care networks [38].
By doing so, intersectionality is understood as challenging health inequali-
ties and structural disadvantages within care networks [31, 38]. Inequalities are
not merely differences but unfair disparities, and might stem from the process
of Othering in which people who are constructed as deviating from a fictitious
societal norm are identified as being different, creating an us versus them men-
tality [14]. Othering is a process that ascribes inferior characteristics to minor-
ity groups and to people deviating from social norms in order to establish and
ideology of superiority of majority groups. Othering is identified by Claeys etal.
[19] as a key concept underlying difficult communication and potential conflicts
within care networks, especially when care is provided to care recipients with
an ethnic minority background. Leyerzapf [35] shows that the denial of underly-
ing in- and exclusion mechanisms within Dutch health care are linked to white
innocence [53] and white privilege [21]. An analysis of processes of Othering
requires a critical examination the taken for granted social position of privilege of
professionals [51, 55].
Methodology
In this study an intersectionality informed qualitative design was used [25, 27,
32]. From an epistemological standpoint we recognize that power is relational
which shapes perceptions as well as presuppositions which are context based and
incorporate time contingency [26, 39]. Using intersectionality as a way of think-
ing recognizes the interconnectedness of numerous socially constructed identi-
ties which collectively shape the lived experiences of individuals and groups [3].
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Health Care Analysis
Additionally, since the larger research project follows is a Participatory Action
Research (PAR), we have taken measures to ensure the inclusion of stakeholders
in every step of the research process [1], which stems from the epistemological
belief that knowledge is embedded in social relationships and is most influential
when produced collaboratively [22].
Data Collection
Two methods of data collection were used in order to elicit rich data from differ-
ent perspectives, to ensure rigor and establish trustworthiness. These are visual-
ized in Fig.1. Firstly, informal conversations were conducted with professionals
in twelve health and/or welfare organizations who support carers. These profes-
sionals were social workers, community nurses or community coaches. The pur-
pose of these informal conversations was to: (a) recruit participants for this and
other sub-studies; (b) use their expertise to inform the interview guide for the
additional interviews, and: (c) substantiate the data analysis and strengthen our
understanding and interpretation. Secondly, seventeen semi-structured interviews
were conducted with various healthcare professionals.
Everyday experiences of professionals in care networks with carers with a
migration background were central in the interview guide and open questions
were used, example questions from the interview guides are shown in Table1.
Fig. 1 visualization of data collection and analysis
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Health Care Analysis
Questions that frame social categories as binary or provoke an essentialized
understanding of said categories were avoided [13].
Sample
Sampling was done purposively to include a diverse set of healthcare professionals
working with carers with a background of migration [23]. From an intersectional
perspective this allows thinking beyond existing categories of difference [32], p.8),
meaning that we did not start with predetermined categories of difference within
the group healthcare professionals working with carers with a background of migra-
tion. As a starting point for sampling we focused on majority Dutch professionals
working with carers with a migration background Recruitment was done via email,
telephone and via informal conversations with key figures in healthcare- and carer
support organizations, starting with the existing network of the authors after which
snowball sampling was used [23]. For this study, we were particularly interested
in the perspective of Dutch majority professionals. During informal conversations
within care organizations it became clear that professionals with a background of
migration themselves wanting to share their experiences. They argued that too often
they collaborate in care networks with carers with a migration background that is
not always similar to their own background. These collaborative networks provided
positive and complex experiences they wished to share, as eloquently described by
Ahmad [7]. Therefore, we did invite a diverse group of professionals along-the-way
(emergent sampling) [23, 25]. A description of the characteristics that were identi-
fied by the participants as relevant during the interviews is presented in Table2.
Analysis
Analysis consisted of a thematic analysis [20] and a secondary intersectionality
informed analysis [50]. Researcher triangulation was a priority to ensure rigor and
establish trustworthiness, therefore the analysis was substantiated by the involve-
ment of two critical friends and a participatory analysis in a community of practice
(CoP) (see Fig.1). Two critical friends were involved during the preliminary analy-
sis [11], both of them identified as bicultural, and provided different perspectives as
they were able to look from a distance to the data and the analysis, yet also provid-
ing additional insights in what it means to have a migration background.
Interview transcripts and fieldnotes from informal conversations were, in con-
stant comparison, subject to a thematic analysis, following the steps of Clarke
Table 1 example questions interview guide
Can you describe your experiences in collaborating with carers with a migration background?
How are the care responsibilities arranged?
What goes well and what needs to be improved?
What does it mean for you to collaborate with carers with a migration background?
What is important for you in the collaboration with carers with a migration background?
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Health Care Analysis
Table 2 Intersectional visualization of sample
Participant Profession Place of Residence Ethnicity Age Place of work Gender
I1 Policy Officer Urban Dutch 63 Municipality Women
I2 Policy Officer Urban Dutch 52 Municipality Women
I3 Policy Officer Urban Dutch 34 Policy Advisory organization on informal care Men
I4 Community Nurse Urban Dutch-Peruvean 36 Care organization also providing home care Women
I5 Community Nurse Urban Dutch-Surinam 53 Care organization also providing home care Women
I6 Community Nurse Urban Dutch 46 Care organization also providing home care Women
I7 Occupational Therapist Urban Dutch 25 Rehabilitation Centre Women
I8 Occupational Therapist Urban Dutch-Armenian 48 Rehabilitation Centre Women
I9 Occupational Therapist Urban Dutch-Turkish 41 Nursing Home Women
I10 Occupational Therapist Urban Dutch 32 Nursing Home Women
I11 Occupational Therapist Urban Dutch 27 Care organization also providing home care Women
I12 Occupational Therapist Urban Dutch 46 Primary care practice Men
I13 Occupational Therapist Urban Dutch 38 Primary care practice Men
I14 Creative Therapist Urban Dutch-Surinam 42 Care organization also providing home care Women
I15 Social Worker Urban Dutch-Afghan 36 Policy Advisory organization on informal care Women
I16 Social Worker Urban Dutch 47 Rehabilitation Centre Women
I17 Director Urban Dutch 55 Care organization also providing home care Men
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Health Care Analysis
& Braun [20]. Subsequently, a round of intersectionality-based analysis was per-
formed, which allows for analyzing complexity, the interaction between indi-
vidual and institutional levels as well as focusing on power structures and social
injustices. Based on Stuij etal. [50], Hunting [32] and McCall [37], an intersec-
tional informed coding scheme was developed (see Table3). This intersectional
analysis deepens the thematic analysis by zooming in on the social locations par-
ticipants assign to themselves [50]. Within the themes, identified in the thematic
analysis, we: (a) searched for social categories participants assigned to them-
selves; (b) analyzed which intersections of social categories came forward as rele-
vant within the data; (c) focused on processes of social injustice and power struc-
tures within the stories of the participants, and finally; (d) searched for aspects of
relevance mentioned with regard to the socio-cultural, historical and/ or political
context in which the provided care took place, in order to expose aspects of power
and injustice in care networks.
A Community of Practice (CoP), running parallel to the larger research study,
was involved in additional participatory analysis aiming to ensure input from rep-
resentatives that are impacted by this study [2]. The CoP consist of care recipi-
ents with an ABI, carers and different professionals (N = 8) with their engagement
in the analysis, the results are deepened and strengthened by their perspectives
with respect to all forms of knowledge to ensure that dominant logics that uphold
inequalities will not be reproduced [24]. Five meetings were held with the CoP
guided by creative hermeneutics [15]: (1) a group discussion of relevant themes
from the thematic analysis; (2) an unraveling of our own pre-assumptions towards
the topics; (3) reflections on the CoP members positions in everyday life; (4) a
group discussion about the CoP members perspective on collaboration in care
networks, what do they recognize in their daily practice and; (5) mind-mapping
the connection between the thematic and intersectional analysis in order to define
the final results.
Table 3 intersectionality informed coding scheme (Stuij, etal. [50]; [32, 37])
(1) Which social categories do the participants
assign to themselves?
e.g. gender, age, disability, family relations, ethnic-
ity, religion, urban/rural, SES, occupation, educa-
tion level
(2) Which intersections of social categories come
forward as relevant within the data?
linking social categories to the stories told by the
participants
(3) Which aspects of social and societal injustice
come forward in the data?
Which forms of power, power structures, power
inequities detected in the interview data?
This can be examples from both justice and injustice
What is used as the norm?
Which assumptions, prejudice, norms and values
come forward?
How does the collaboration take place and can ten-
sions be detected?
(4) Which aspects of the socio-cultural, historical
and or political context come forward?
Locally, nationally and of in the country of origin?
Which assumptions, prejudice, norms and values
come forward?
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Health Care Analysis
Results
We explored professionals’ perspectives on the support of and collaboration with
carers with a migration background. The analysis shows that professional perspec-
tives are complex and layered and that underlying social categories influence their
daily practice. Four main themes are identified: (1) ‘The difficult Other’ which refers
to professionals’ perspective on the difficulties they encounter within care networks
which they attribute to the ‘Other’; (2) ‘The dependent Other’, showing profession-
als’ understanding of difficulties as intensified by the care context, resulting in a
state of dependency of the Other; (3) ‘The uncomfortable self’, with professionals
describing how insecurities evoked by the Other lead to an inability to act ‘profes-
sionally’, and; (4) ‘The reflexive self’ with professionals reflecting on how their per-
sonal and professional identities were implied in complex and diverse care networks.
A Self-Other binary becomes visible within the results. In the interviews, we
identified a ‘Self’ presented by professionals’ either with or without a background
of migration and an ‘Other’ which, according to the participating professionals, rep-
resent carers with a migration background and occasionally also the care recipients.
The first three themes are based on the stories of Dutch professionals belonging
to the white majority. Within these themes it can be seen that the intersection of
being Dutch/white and professional becomes problematic when white privilege is
not noticed or confronted and opportunity arises to attribute the underlying reasons
to the other. These themes focus on the uncovered aspects of social injustice and/
or underlying power inequities within the collaboration. Within the fourth theme
relevant intersecting social categories identified by participants themselves become
visible and are therefore only explicitly mentioned within this theme.
The Difficult Other
When asked about their experiences in collaboration with carers with a migration
background, participants presented most carers with a background of migration they
come in contact with as ‘complex’ or ‘difficult’ based on ‘their’ cultural background
and identified them as ‘the Other’. During the informal conversations professionals
recognized great willingness to provide informal care which professionals attributed
to the non-Dutch cultural background of carers. Pre-assumptions of professionals
about care attitudes in different cultures became visible; a Dutch policy officer for
example describes ‘with non-western clients that’s the way it is in their culture’ (I2)
and a Dutch community nurse explained ‘there is more a We-culture, family takes
care of the support needs’ (I6). Professionals experience this emphasis on family
care often as causing difficulties especially within larger families, where it is often
unclear to them who is the actual carer providing care and who is the spokesper-
son. A Dutch policy officer explains that within her care organization, ‘it is difficult,
especially in Muslim families that there is one person appointed as primary carer
who is the contact person with the professionals, and not necessarily the person pro-
viding the actual care. Often the father, brother or uncles are the primary spokes
persons and the daughters-in law the actual carers’ (I3).
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Health Care Analysis
When the division of responsibilities within families is unclear to professionals,
miscommunication between professionals and carers may occur, in particular when
family members have diverging ideas on caring responsibilities. Professionals attrib-
ute this to different levels of acculturation in the Netherlands society. For example
a Dutch social worker finds ‘dealing with the struggles within the family stressful
when carers are not accustomed to the Dutch norms yet’ (I16). Additionally, con-
flicts between professionals and carers emerged when gender roles within families
skewed the division of care responsibilities within families. A Dutch occupational
therapist describes an example of a Somalian carer who suffered severe carer burden
due to lack of care division of care within the family: ‘She has a big family. Her
nephews and uncle came by every week to visit the nursing home, but they did noth-
ing. They are not allowed to [based on their cultural background]. Only women from
the family are allowed to help’ (I11).Such care division is experienced as difficult
when this does not align with professionals own personal values. It is not the par-
ticular situation or family, but the generalized culture that is perceive as problematic
in these cases.
Furthermore, participants assume that the intersection of ABI with a minoritized
cultural background creates a particular vulnerable position for carers in society.
Several participants explain how families cope with the invisible consequences of
ABI, which proved difficult in some cultural groups. A Dutch care organization
director described that ‘in some cultural communities there is a lack of knowledge
and understanding’(I17). This lack of knowledge and understanding may results in
a lack of acceptance by the community, which in turn leads to social isolation of
carers. The social isolation of carers is is exacerbated by carers not reaching out to
healthcare professionals out of loyalty to the care-recipient. A Dutch occupational
therapists experienced that, ‘[They] do not want to ask for help as they feel ashamed
they are unable to provide the care themselves’ (I12), as there may be a cultural
obligation to take care of your family. A community nurse notices that ‘they [carer
with a background of migration] never reach out. In all those years working in pri-
mary care I only had one carer who came [after discharge] out of her own will to ask
for help’ (I6). Again, the cultural difference of carers is perceived as the underlying
problem for health professionals to offer support in the home context. On top of that,
difficulties are linked to unrealistic expectations of carers towards professionals and
care organizations: ‘They demand too much’ (I8). Consequently, these ‘demands’
result sometimes in irritation and feeling annoyed towards carers. A social worker
gives an example: ‘They expect that we do everything for them, that is just not the
way it works here’ (I16). This mismatch impacts the relationship between the profes-
sionals and the carers as many participants feel a lack of appreciation by carers and
care recipients.
The Dependent Other
In the Dutch context of care, a norm of self-reliance and person-centered care exists
that assumes that everyone is capable of self-reliance or active control over their care
situation. In our informal conversations, professionals recognized that this ‘difficult
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Health Care Analysis
Other’ does not readily fit within this existing norm, and that this mismatch may cre-
ate a ‘dependent Other’. Professionals attributed this dependency to health illiteracy
of carers of certain cultural groups’ and to carers’ care attitudes which make it dif-
ficult for professionals to adequately support the carers. A Dutch community nurse
explains: ‘They just don’t know the way in the swamp of different laws and regula-
tions which are carried out by different organizations’ (I6). The bureaucracy and
lack of knowledge to navigate the system renders carers dependent on professionals
who invest extra time or on knowledge in their own social network. Knowing the
way is based on coincidentally having a professional within your care network who
bridges the gap to the home context, often this is not the care which has a worrisome
effect that carers are often invisible with the Dutch healthcare system.
Especially after discharge carers become invisible within the Dutch healthcare
system, A Dutch occupational therapist explains that this is worrisome ‘because at
home the confrontation with the limitations of an ABI become visible and it hits that
the situation is vulnerable and there are many struggles, so that’s the moment car-
ers reach-out, but not carers with a background of migration’(I12). Some partici-
pants realize that that non-western carers are dependent on the possibilities of the
healthcare system. They express feeling friction as they realize how carers do not fit
the rigid and standardized way of working. Nevertheless, responsibility is however
placed on the other as participants argue that carers with a background of migration
have learned to be helpless. A Dutch informal care policy officer talked about the
responsibility of carers and how this contradicts with her own views on care respon-
sibilities and self-control: ‘I noticed that a lot of non-western carers have learned to
be helpless. I believe that we are in full control of our actions. Your decision-making
skills should not be influenced by your faith or any culture, only then can you culti-
vate your own values and beliefs. I feel strongly that everyone has the same chances
in life and that you paddle your own canoe. I try to encourage carers to do so but it
does not always pan out the way I’ve hoped’ (I1). Putting emphasis on self-reliance,
which is a deeply Western individualized cultural belief, placing the ‘blame’ of not
fitting in completely on the shoulders of the dependent ‘Other’ is overlooking the
unequal position of carers with a background of migration and not recognizing the
need for rapprochement within care networks as a responsibility of everyone, con-
tributes to inadequate collaboration within care networks.
During the interviews participants expressed their struggle with the fact that the
dependent other does not readily fit within the system. Standardization of care inter-
ventions form a juxtaposition with the need for person-centered care in which the
uniqueness of each person is seen as essential. This is an impossible situation based
on previous observations that carers often do not know their way in the health care
system. Additionally participants describe that carers also not have equal opportu-
nities to access healthcare. Professionals recognize that carers and by proxy care
recipients may not have the means to access healthcare after an ABI. For example,
participants mention that the lack of supplementary insurance is a struggle for car-
ers with a background of migration: ‘They do not have the financial means for this
kind of insurance’. But without this form of insurance additional but necessary care
needs to be paid out of pocket, and this is often not possible, which again leads to
skewed access to healthcare services.
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Health Care Analysis
The dependent other also becomes visible in the lack of access to professional
translators within the healthcare system. As participants mention language as the
main barriers within the collaboration, a Dutch-Surinamese creative therapist tells
that: ‘When I think of non-western clients I think of the language barrier, in addi-
tion to the language barriers from the ABI such as aphasia’ (I12). There is a large
need to have contact with carers who speak Dutch or work with a translator, placing
responsibility for unequal access to care on carers as a translator is ‘not always read-
ily available’ (I7). However, participants also express that there is a gap in health
care: ‘It’s not okay when people do not understand you! or ‘nobody talks about their
fears, anger or sadness in a second languages’ (I16).
Struggles between professionals and carers also emerge when family norms and
values of caring for someone interfere with care provision. A Dutch occupational
therapist explains, ‘I always put a large emphasis on the self-reliance of the care
recipient, with the aim of not losing more function after the brain injury than is
already lost’ (I7). This focus often leads to debates between professionals and fami-
lies as families tend to take over all activities, keeping the care recipient dependent
of the carer. A Dutch social worker provides an example where care recipient expec-
tations did not fit within Dutch Social Support Act: ‘A woman from Egypt only has
her son here in the Netherlands. Due to incontinence as a consequence of her ABI,
she has severe bedsores and is unable to take care of her house. She explicitly does
not want her son to take care of the house because he is a man’ (I16). This mis-
match impacts the relationship between professionals and carers as such a statement
by care receivers may cause professionals to experience a lack of appreciation by
carers and care recipients.
Dependency is seen in the role of the carer themselves, as they do not have a
formal place in the care network. Carers depend on professionals, organizations or
policy to assign them a place in the care network. ‘Sometimes participants ask ques-
tions to the carer, ‘how are you holding up, do you manage with work or do you also
focus on yourself?’ (I10). But in many organizations participants are not required to
discuss care or choices with a carer, ‘this is the responsibility of the care-recipient’
or ‘they need to give consent to talk to the carer, which proves difficult sometimes
with an ABI (I6). For the interviewed professionals, this was stressful as they felt
caught in the middle when trying to meet the expectations of the care recipient and
carers. Care was constrained by the possibilities of the care context.
The Uncomfortable Self
Collaborating with a carer with a non-majority cultural background may lead to feel-
ings of insecurity and stress. A Dutch occupational therapist explains ‘I have stress
when I do not know what to do, do I need to take of my shoes? May I refuse more
coffee? When I am with a Dutch family I ask, but here I do not’ (I13). Unfamiliar-
ity with gender roles in different cultures makes participants uncertain about their
possibilities as a professional, a Dutch community nurse askes: ‘Are we allowed to
wash a man when only his wife is allowed to see him naked?’ (I6). Insecurities are
also observed in the discomfort surrounding terminology when talking about carers
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Health Care Analysis
with a migration background, such as ‘foreigners’, ‘immigrants’, ‘westerners versus
non-westerners’, ‘them and they’, pointing towards a lacking vocabulary for speak-
ing about diversity issues. Professionals’ discomfort could be literally observed dur-
ing the interviews in actual physically retreating bodily posture when discussing the
matter, or accompanying it with laughter.
Uncertainties might stem from the topic’s political sensitivity, a fear of doing or
saying something wrong, or even be viewed as a racist. Racism or discrimination
was mentioned by two participants who wanted to make abundantly clear that they
themselves were not discriminating. A Dutch occupational therapist expressed that
cultural differences are a struggle for her for example when carers present as vic-
tims and lack self-reliance and place their locus of control outside themselves. She
described her feeling, ‘dammit again a Moroccan who believes that she is a vic-
tim…I do not want to deal with that anymore’ (I12). Another extreme example was
given by a Dutch social worker, who described a complex situation in dealing with
a care recipient who called her a racist, after which she called the police department
to report him: ‘Dutch people never say they get discriminated against, this always
concerns someone with a different culture. I feel that this is learned behavior and I
believe that when you are firm and do not tolerate being called a racist this will not
happen again’ (I16). Both professionals expressed a justification for their comments
with a reflection that this is not a discriminatory way of thinking.
When speaking about lack of self-confidence, a shift in the professionals’ reason-
ing becomes visible in their stories. All participants comment on the role of diver-
sity, and argue that carers are the same, to justify their earlier comments on the diffi-
cult other. For example a Dutch occupational therapist argues; ‘occupational therapy
is aimed at the individual and has therefore nothing to do with diversity’ (I11) or a
director of a care organization explains his worldview ‘person is a person to me no
matter if they look different’ (I17). With this sudden turn, professionals completely
negate the role that aspects of diversity play when their reflections, assumptions and
predefined expectations could not be reconciled with their professional identity.
The Reflexive Self
Some participants reflect on their personal and professional identities and how these
relate to their work. In general, collaboration with carers with a migration back-
ground is perceived by some participants as fun or a learning opportunity. A policy
officer likes to submerge herself in different cultures: ‘I like to learn from different
culture’ (I2). Some participants explain how cultural differences are a struggle for
them, for example when carers take on what they perceive as ‘an attitude of vic-
timhood’. Thereby several participants reflected on their own role with differences
in care networks, and recognized the need to be open minded and the necessity to
ask questions and to not make quick assumptions. A Dutch occupational therapist
reflected: ‘I realize that I have blind spots… I need to make contact first before going
further in the process’ (I13). Often, participants realize that there is a need to let go
of the expert opinion and first, learn from different cultures. A Dutch Afghan social
worker recognizes the need to be open minded and not assume to quickly: ‘Know
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Health Care Analysis
that knowledge is power but that you do not know everything even though you are
the professional’ (I15).
Subsequently, some participants identified within their own identity, two inter-
secting aspects of diversity as relevant regarding the professional perspective: being
an educated professional on the one hand, and seniority within the workforce or
having a migration background themselves on the other hand. Senior profession-
als sometimes recognized that reflection is required on the validity of their knowl-
edge. This Dutch-Peruvian community nurse explained how she falls back on her
work experience when trying to work in a partnership with carers: ‘Throughout the
years as a nurse I have learned to perceive people as my partner, being the profes-
sional who thinks they know best will do more harm than good in my opinion’ (I5).
A Dutch-Turkish occupational therapist who for years works in the same culturally
diverse community adds to this by explaining that she does not have a manual to fit
every person. To her, person-centered care has added value and she explicitly men-
tions the autonomy, or power of doing things differently every time.
Some participants mention how having a migration background as a professional
was helpful in itself when supporting carers. A Dutch-Peruvian community nurse
explains: ‘I am from Peru myself and I speak several languages. So I am able to
communicate with them on their level’ (I4). They found it easy to build trust, which
is necessary for carers to be open about their situation and support needs. This
is not always the case. A Dutch-Afghan therapist explains that to her, sharing an
assumed similar background with care recipients can also be burdensome: ‘I often
go on home visits where people have the same cultural background as me. They put
an extreme pressure on me by saying things like… ‘I am so happy that you under-
stand me completely’… while I have no idea’(I15). The participant is annoyed hav-
ing to explain over and over again that she does not understand everything, and this
has a major impact on work pressure and pleasure. Thus, although professionals’
migration backgrounds may be an added value, they are not automatically so. And
finally, although people may share group memberships, stereotypical assumptions
and expectations can also be applied to professionals by care recipients and carers.
Discussion
This study gains insight in diversity in care networks by exploring professionals’
experiences in collaboration with informal carers with a migration background. We
will now discuss how the four themes help to understand the complex reality of this
collaboration, which is influenced by professional and personal identities and the
context in which care is provided. We will also argue that our intersectional analysis
offers an explanation for the health inequalities found by other scholars who studied
diverse networks and discuss what is needed to overcome these inequalities.
Our intersectional analysis reveals a dynamic process of feeling, thinking and act-
ing in professionals’ description and understanding of their collaboration with infor-
mal carers with a migration background. Professionals’ experiences are influenced
by aspects of diversity of both the diverse Other as well as the diverse self, which
is captured in the four themes: (1)’The difficult Other’, (2)’The dependent Other,
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Health Care Analysis
(3)’The uncomfortable self’ and (4) ‘The reflexive self’. The four themes are inter-
related, and can be seen as part of what Brons [14] denotes as a dialectic process in
which Othering is the ‘simultaneous construction of the self and the other in mutual
and unequal opposition through identification of (un)desirable characteristics. This
opposition sets up a superior Self in contrast to an inferior other, but that is nearly
always left implicit.’ (p.70).
The process of Othering becomes explicit and visible when professionals identify
the other as (1) difficult when problems arise within the collaborative network, and
(2) dependent when they do not fit within the structures and norms of the Dutch
healthcare system. This identification as the difficult other is based on intersecting
aspects of diversity such as culture, family systems, and gender roles, and associated
stereotypical assumptions. These assumptions are often taken-for-granted and highly
unconscious among professionals, and so are their normative persuasions of how
carers and their care recipients should behave according to the dominant societal
norms and policy regimes. In such a situation it is hard to build a relationship and
attend carefully to the specific needs of the carer and the particulars of the situation.
This is in line with Alpers [8] who argues, from a care recipient perspective, that
Othering might lead to distrust within care relations, and a recent study of Claeys
etal. (2021) who show that professionals are ‘likely to portray their own frame of
reference and find it challenging to show empathy with patients with a different
background’ (p. 484). Moreover, there is the risk that professionals from their per-
ceived superiority will use their expert power to determine what is needed by whom.
If professionals only see the generalized other they may not assess and offer what is
needed by the particular informal carer(s) in a diverse care network, which may lead
to health inequalities. In this study, we see how the process of Othering offers an
explanation of these undesirable outcomes, and that Othering needs to be addressed
to avoid health inequities and related negative influences on health outcomes.
Misunderstandings and conflicts within care situations become visible, within the
‘Dependent Other’ as professionals narrate about their struggles in the collaboration
that derive from this dependency. Tensions and conflicts arise when carers with a
migration background do not readily fit within the Dutch healthcare system, which
is set by neoliberal health and welfare policy. This finding is in line with Peacock
et al. [42] who argue that the experienced dependency can be the result of inter-
nalized neo liberal discourse. Neo-liberal policies have an aggravating effect of the
‘access to healthcare services for groups that are already experiencing difficulties’
[46], p. 7). Othering is then often used to serve to ‘both position the self in a safe
and defensible space and to endeavor to make sense of what is felt to have changed
in the wider world’ [42]. The dependent Other is a construction in opposition to and
harnesses the independent professional as neutral Self, and this Self-Other binary
prevents a mutual partnership between professionals and informal carers.
Subsequently, insecurities and stress are observed amongst professionals
within the collaboration with carers with a migration background which is cap-
tured in the ‘Uncomfortable Self’. Prejudices of professionals about other cul-
tures and habits of carers create tensions and barriers within the collaboration.
This also works the other way around, when informal carers have different expec-
tations of the provided care, which may lead to distrust fueled by preconceptions
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Health Care Analysis
of professionals [8]. Within the ‘Uncomfortable Self’ it is recognized that profes-
sionals do not question situations that are unknown to them as they have the feel-
ing they are required ‘to know as the expert’ professional. This is also observed
by Claeys etal. (2021) who identify fear amongst professionals to be seen as
racist, which prevents them to ‘communicate and act in a spontaneous way’ (p.
4). Instead of defining oneself as all-knowing and superior to the other, profes-
sionals may redefine their identity to develop a more caring and fruitful relation-
ship with informal carers [2]. The Self-Other binary can only be deconstructed
by reframing the identity of the professional and the relationship as being deeply
interdependent and interconnected. Only, then a partnership approach can start to
develop among professionals and carers in a diverse network.
The ‘Reflexive Self’ describes professionals who reflect on their own identity
and its impact on their daily practice. Reflexivity towards the role of diversity
and participants’ own identity shows a level of sensitivity necessary to overcome
social injustice recognized in the participants experiences. Namely, being sensi-
tive towards carers allows them to speak their mind, recognize multiple truths
within a care network and create a space where the other is also heard especially
those who are not typically acknowledged and heard as an ‘expert’ in their role.
This requires that all stakeholders in care networks, at personal, professional and
organizational levels, enter into a multicultural dialogue [28]. The lack of reflex-
ivity may reinforce unchallenged assumptions about the Other [32]. Profession-
als often do not recognize the need for help as they simply do not recognize the
signs that an informal carer is in need, or they lack knowledge about the cultural
background of the informal carer. In order to widen access to healthcare, there is
a need to be sensitive for blind spots, based on personal identity and social posi-
tion. Letting go of the illusion of being all-knowing and that all tensions can be
technically solved, the reflexive practitioner starts from a more humble attitude,
acknowledging the wisdom of informal carers and their longstanding relationship
with the client [5]. Changing how professionals communicate can alter power
dynamics and reconfigure healthcare practices.
Strengths andLimitations
The use of intersectionality as an analytical framework in the secondary analysis is a
strength in this work showing the implicit influence of contextual factors and inter-
secting aspects of diversity becomes explicit [50].
As seen in the results of this study the original themes are colored by a deeper,
otherwise invisible layer, of diversity and power. Additionally, the data collection
and analysis of the dataset consists of 17 interviews, 12 informal conversations
within health and welfare organizations, a CoP and two critical friends in order to
create a strong sense of data- and researcher triangulation. Although some partici-
pants had little contact with carers with a migration background data saturation was
still met. One of the limitations of this study is the fact that some of the included par-
ticipants had limited contact in their work with carers with a migration background.
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Health Care Analysis
Implications
From the professional perspectives it becomes evident that an interrelated process of
Othering, including the construction of a self-other binary, plays a role in diverse care
networks, which offers an explanation for health inequalities that have been evidenced.
From the professional’ perspective the collaboration in these networks is loaded with
tensions and misunderstandings. It would be beneficial to focus further research on the
perspectives of carers with a migration background and care recipients and uncover
their experiences in the collaboration within care networks.
An intersectional approach can be helpful to understand the self-other binary that
appears within collaborative care networks surrounding care recipients with ABI. The
rather essentialist perspective of professionals on carers with a background of migration
may be broadened when an intersectional perspective is introduced. Such a perspec-
tive may help professionals to gain knowledge and insight in differences and inequali-
ties within and between groups of carers they collaborate with, now often in general
referred to as ‘them’ or using broader overarching terms. Additionally, an intersec-
tional perspective may provide insight in the intersections of diversity categories that
are embedded in a specific context of care networks. This may help to highlight and
understand the diversity amongst carers with a migration background. Professionals
may then be able to move beyond an essentialized view on ‘cultural difference’ when
working with carers and by proxy care recipients with a background of migration.
Within educational programs and within practices there is a need to explore how
reflexivity can become an essential competence of what it is to be a professional to
ensure equal access to healthcare. ‘Reflexivity can help transform the collaboration
when people involved bring critical self-awareness, role-awareness, interrogation of
power and privilege, and the questioning of assumptions and ‘truths’ to their work’ [27,
28], p.10). Reflexivity is the process of engaging in self-reflection about who we are as
professionals and how subjectivities and biases guide and inform daily practices [34].
Reflexivity requires one to enter into what Donald Schon [47] calls a ‘swampy low-
land’, that is the uncomfortable place where technical solutions do not work, because
of uncertainties and ambiguities and where one is involved on a personal level. Here
the comfortable shield of professional neutrality can no longer be upheld, which often
causes emotional pain, moral uncertainty and existential unrest. No need to say profes-
sionals rather avoid such a place, and often have the privilege to do so because they do
not regularly have to reflect on their cultural background as they are not confronted as
being different [21, 52].
Therefore the integration of reflexive practices in healthcare curricula is needed as
diversity responsive care requires a critical investigation of oneself as professional. This
reverses the traditional way in which the self-Other binary is approached [35]. Instead
of studying the other, the Self becomes object of scrutiny.
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Health Care Analysis
Conclusion
The collaboration between professionals and informal carers with a migration back-
ground is subject to and reinforces underlying power structures and aspects of diver-
sity. A process of Othering and Self-Other binary becomes visible in unequal relation-
ships and tensions within the collaboration. Amongst participants, levels of insecurity
emerged when a variation of action was needed, which did not belong to the core com-
petencies of their profession, which fueled the feeling of not being an adequate pro-
fessional. Being reflexive as a professional and letting go of the illusion of being all-
knowing and in control of confusing situations will allow for the identification of blind
spots and power asymmetries within the collaboration. We would therefore call upon
educational curricula and professionals to invest in the integration of reflexive prac-
tices through participatory action research, unsettling the Self-Other binary by a criti-
cal scrutiny of oneself as part of an interconnected and interdependent care network.
Acknowledgements The authors would like to thank Frohar Aziz (FA), research assistant at the Amster-
dam University of Applied Science, and Sara Anne Agbegnon (SA), honors student from the occupa-
tional therapy program, for their assistance in the preliminary analysis of the interview data in their role
as critical friend.
Author Contribution Aldiene Henrieke Hengelaar: conceptualization, formal analysis, funding acquisi-
tion, methodology, project administration, writing original draft. Margo van Hartingsveldt: conceptual-
ization, funding acquisition, methodology, writing- review & editing. Tineke Abma: conceptualization,
methodology, supervision, writing- review & editing. Petra Verdonk: conceptualization, methodology,
supervision, writing- review & editing.
Funding We were able to conduct this research with the support of 1) the Doctoral Grant for Lecturers
from the Dutch Research Council (NWO), project number 023.011.009, and 2) a grant from the Centre of
Expertise Urban Vitality of the Amsterdam University of Applied Science, the Netherlands.
Declarations
Conflict of interest We do not have any conflicts of interest to declare.
Ethical Approval Ethical approval was granted, prior to data collection, by the Medical Ethics Review
Committee of VU University Medical Centre, project number 2017.395.
Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,
which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long
as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Com-
mons licence, and indicate if changes were made. The images or other third party material in this article
are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the
material. If material is not included in the article’s Creative Commons licence and your intended use is not
permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly
from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
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Authors and Aliations
AldieneHenriekeHengelaar1,2 · MargovanHartingsveldt2· TinekeAbma3·
PetraVerdonk1
* Aldiene Henrieke Hengelaar
a.h.hengelaar@hva.nl
1 Department Ethics, Law andHumanities, Amsterdam Public Health Research Institute,
Amsterdam University ofApplied Science, Amsterdam UMC, location VUmc, Tafelbergweg
51, PO box2557, 1000CNAmsterdam, TheNetherlands
2 Department ofOccupational Therapy, Amsterdam University ofApplied Science, Amsterdam,
TheNetherlands
3 Department Public Health andPrimary Care, Leiden University Medical Centre, Leiden
University andLeyden Academy onVitality andAgeing, Leiden, TheNetherlands
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