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

This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.

Health inequities exist between care recipients with or without a migration background, but there is insufficient knowledge about the mechanisms that lead to the reproduction of health inequities. This article aims to contribute to the understanding of how diversity, equity and inclusion (DEI) shape the experiences of care recipients with a disability and migration background in collaborative care networks, through an intersectional lens. A participatory study was conducted with professionals, carers, and care recipients with acquired brain injury (ABI) in nine community of practice (CoP) meetings. The study is part of a larger study and was guided by a hermeneutic framework focusing on reciprocal learning in the CoP through cocreative reflection and intersectional analysis of data. The experiences of nine care recipients with ABI and a migration background, collected in open interviews, were central to the analysis. Analysis was further substantiated by analyzing the stories of 21 carers with a migration background and 17 professionals, collected in semistructured interviews. An intersectionality lens was applied to understand the power dynamics in the experiences as expressed in the interviews and stories. Using vignettes of care recipients’ experiences, we present the following intersectional mechanisms that reproduce health inequities: (1) navigating diversity, (2) gender‐related loneliness, (3) hidden challenges, and (4) challenging assumptions. We conclude that upon discharge home care recipients with ABI and a migration background fall into a lonely state of being, often with a lack of social support and experience financial difficulties. Care recipients disappear out of the healthcare system’ sight and are unable to find their way back. Diversity‐responsive health care begins with a critical awareness of health inequities and the underlying mechanisms among professionals, healthcare institutions, and policy.

Introduction: In the Netherlands, professionals in social work and healthcare are increasingly involved in care networks in which informal caregivers, volunteers and professionals need to collaborate in a relationship of equality to support care recipients. At the same time, there is a growing consciousness that the diversity among Dutch citizens should be taken into account within this collaboration. In order to achieve good collaboration, it is important that professionals pay attention to the informal caregiver: who is this person and what views does this person have about providing informal care? Informal caregivers and their views are often very different from each other. In this presentation, we will discuss how professionals can create space for this diversity among informal caregivers. Public involvement: This presentation is part of two PhD studies in which informal caregivers, care recipients and professionals in social work and healthcare are involved and determined the necessity for these studies and are involved in the participatory analysis and the dissemination of the results in educational programs and practice. Methods: As part of our PhD studies, several projects were conducted in which both quantitative and qualitative methods were used. All projects used an intersectional perspective to better understand the role of diversity in informal caregiving experiences. Next to that, a scoping review on this topic was conducted. During the presentation, we will combine insights of several projects to discuss the importance of creating space for diversity in care situations. Results: We discovered the added value of an intersectional perspective to look into diversity among informal caregivers. This perspective helps to get to know the person behind the informal care better, but also to gain a better understanding of the context in which informal care is provided and what people need to be able to continue to provide informal care in a pleasant way. Additionally, this lens provides insight in the necessity for reflexivity amongst professionals about their own positionality and views on providing informal care. Reflecting on professionals’ own frames of reference helps to recognize blind spots and assumptions about the other. Avoiding such assumptions enables professionals to make informal caregivers feel safe and understood. Implications for practice and further research: Adopting an intersectional perspective to look into diversity among informal caregivers and working reflexively stimulates professionals to analyse which views, but also assumptions about informal caregivers exist among professionals in teams. This encourages organizations and professionals to improve accessibility of their support and to create space for differences in views and needs in the support they provide. Using intersectionality in informal care research helps to understand the role of diversity in caregiving needs and experiences.

Current Dutch policy on long-term care is aimed at a stronger connection between formal home care and informal care. We examined if formal and informal caregivers of community-dwelling older adults discuss the care and whether this is related to characteristics of the older adult, the care network and the individual caregivers. Data are derived from 63 community-dwelling older adults, including their health, their perceived control of the care and their care network. In addition, 79 informal and 90 formal caregivers are interviewed on their motives and vision on caregiving. The 112 dyads between those formal and informal caregivers are the units of analysis in the current study. Bivariate analyses reveal that informal caregivers are more likely to discuss the care with formal caregivers when they are residing with the older adult, when they provide a lot of care and/or when they are strongly motivated to keep the older adult at home. This is particularly the case when the care demands are high. Characteristics of the formal caregivers were not important. In conclusion, discussion of care between non-resident informal caregivers and formal caregivers is not self-evident and requires more effort to be established.

The role of migration status in the link between ADL/IADL and informal as well as formal care in Germany: Findings of the Survey of Health, Aging and Retirement in Europe

Several organisations (i-mens, Steunpunt Mantelzorg, Hoplr, city of Aalst, sickness funds, Eerstelijnszone regio Aalst, informal carers organisations...) came together for the project ‘Neighbourhood Building Blocks’ to create a caring neighbourhood in a super-diverse area in Aalst, a city close to Brussels, Belgium. It is an area with an older ‘Belgian’ population and a younger population with a migration background. People in this neighbourhood are generally less wealthy, less healthy and more socially isolated than in other areas in Flanders. The goal of the project is to ensure that people only must ask help once to get the appropriate answer or support at the right time. To achieve this, we are creating a virtual and physical network of informal and formal support in the neighbourhood, putting together several existing building blocks: capacities of neighbours, professional care, volunteers, support for informal carers, a digital platform of neighbours (Hoplr) and the building complex of i-mens – a care organisation, with an office building for their home care services, a day care and service flats. The underlying assumption is that everyone has something to contribute and something to gain from the network. We have 3 intervention axes: 1. Neighbourly help network 2. Empowerment of informal carers 3. Connecting the professional care network with the informal network. We have a neighbourhood concierge and connector. She connects the 3 axes of the project, and ensures that the project is driven by and embedded in the neighbourhood, together with the key partners. We start from the capacities of neighbours (ABCD-model) to create neighbourly help networks, both offline and online. We match people based on their capacities and needs, and track this through a dashboard (people matched – help provided – after care). To find capacities and needs we organise activities and informal contact at the gathering room of the service flats and the meeting rooms of i-mens. All activities have 3 functions: information in group on rights and possible support, conversation and encounters in group (social contact), and one-on-one questions and support with individual cases. Learning from the experience of previous caring neighbourhoods, we give specific attention to informal carers. We know that they find it more difficult to rely on help from neighbours and professional caregivers. Empowering and informing informal carers through specific interventions ensures their involvement and support from the network. We connect professional actors (care organisations, local traders, …) with each other and with the informal actors, tailored to the needs and capacities of the neighbourhood. We aim to make professional support and care more accessible to people in the neighbourhood. At the back-office side, we are developing a decision-making tree so we know which question for help can be resolved by which formal or informal actor. The dashboard to match neighbourly help will be expanded in order to track matches with formal actors. We will present the first results of the project, and share experiences of neigbhours, informal carers and profesionnal actors.

ABSTRACTIn ageing societies, policy makers aim for more contact between informal and formal care-givers as it may enhance the quality of care. So far, the linkage between formal and informal care-givers is generally studied from a one-sided or a single dyadic perspective, without taking into account that care networks of community-dwelling older adults often exist of multiple informal and formal care-givers. The current study examines discussion of care between all potential informal–formal care-giver dyads in a care network, and relates this to characteristics of the older care recipient, the care network and the care-givers. Seventy-four Dutch older care recipients provided information on all care-givers who helped with five different types of tasks; 410 care-givers reported on the contact between all care-givers identified. Multi-level logistic regression was conducted in 2,150 informal–formal care-giver dyads and revealed that in 26 per cent of all these dyads discussion on care occurred. This was more likely when both care-givers performed multiple types of tasks, the informal care-giver was residing with the care recipient, and contact within the formal and the informal sub-network was higher. To enhance discussion of care between informal and formal care-givers in care networks where no discussion occurs at all, home-care organisations may need to allocate formal care-givers who form a bridge with an extra-residential care-giver of care recipients living alone.

BackgroundCollaboration among informal and formal caregivers in a mixed care network of home-dwelling elderly may benefit from using a groupware app for digital networked communication (DNC).ObjectiveThis study aimed to describe and explain differences in the use and evaluation of a DNC app by members of the care network and to come up with a list of conditions that facilitate (or restrict) the implementation of a DNC app by a home care organization.MethodsA pilot study collected information on digital communication in 7 care networks of clients of a home care organization in the Netherlands. Semistructured interviews with 4 care recipients, 7 informal carers (of which 3 spoke on behalf of the care receiver as well on account of receivers’ suffering from dementia), 3 district nurses, 5 auxiliary nurses, and 3 managers were conducted 3 times in a period of 6 months. In addition, we observed relevant workshops initiated by the home care organization and studied log-in data created by the users of the DNC app.ResultsThe qualitative data and the monthly retrieved quantitative log-in data revealed 3 types of digital care networks: arranging the care network, discuss the care network, and staying connected network. Differences between network types were attributed to health impairment and digital illiteracy of the care recipients, motivation of informal caregivers, and commitment of formal caregivers. The easy availability of up-to-date information, the ability to promote a sense of safety for the carers, and short communication lines in case of complex care situations were positively evaluated.ConclusionsIt is concluded that digital communication is beneficial for organizing and discussing the care within a care network. More research is needed to study its impact on care burden of informal carers, on quality of care, and on quality of life of home-dwelling frail older adults.

This paper reports a study to investigate the relationships between informal and formal care, changing relationships over time, impact of integrated care, and theoretical and methodological lessons that can be drawn from research on this topic. The ratio of informal to formal care provided in nursing homes varies. In many countries the predominance of traditional, formal care is being challenged by the emergence of integrated care models in which formal and informal caregivers co-operate and co-ordinate their activities to deliver tailor-made care. This move towards integrated care is likely to result in changes in the degree and nature of involvement of formal and informal caregivers in care activities. However, very little research has investigated this. Previous research is restricted to one point in time, as opposed to focussing on the changing relationships between formal and informal caregivers over time. The quasi-experimental design encompassed a traditional care comparison setting and an experimental setting with an integrated care intervention. At three measurement points, one before the intervention in May/June 2000 and two at 6 and 14 months after the intervention, informal and formal caregivers recorded their care activities. Informal care relationships were determined by calculating contribution rates and informal/formal care ratios for 14 activities. Integrated care did not bring about the expected major changes. There was a limited amount of substitution of formal care with informal care. There were limited changes in the extent of dual specialization, in which informal and formal caregivers perform separate activities. There was little supplementation of formal care with informal care. Furthermore, relationships changed over time, resulting in a complex pattern of linkages at the level of separate activities. Informal caregivers contribute to many activities. The impact of integrated care on the degree and nature of involvement, however, was moderate. A possible explanation is the contextual situation for nursing home care. These findings point to the need for further research into the (changing) relationship between formal and informal carers in residential care activities and the evolution of this relationship over time.

The increased demand for long-term care (LTC) and the drastic reforms of the LTC systems in western societies create uncertainty among families. It raises the question of whether and how families can provide appropriate LTC for their older relatives and maintain the wellbeing of the care recipient (CR). One solution is for core family members (partners and children) to organize care together with other informal and formal caregivers as much as possible in large and diverse care networks. Well functioning care networks could then possibly contribute to the wellbeing of the CR. The first contribution of this symposium focuses on the informal care potential of the older care recipient and investigates which characteristics of the social network are associated with a care network with many informal helpers. The second paper examines how different types of (informal) care networks contribute to CR’s psychological well-being, and to what extent loneliness, perceived control and care sufficiency play a role in this. The third paper links the theoretical models of both papers and investigates whether and how the associations between the social network, the care network and wellbeing vary in different societal and LTC contexts. All contributions use the Longitudinal Aging Study Amsterdam (LASA), a long-term study into the functioning and care use of older people in the Netherlands. Data are used from ten three-yearly waves between 1992 and 2022. The discussion focuses on which directions the studies provide for improving long-term care for the older care recipients and their informal caregivers.

There is no cure without care.

This study has investigated older people's experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use. Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative. An exploratory, qualitative design involving two time points. A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes. The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life. Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities. Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen.

Introduction Although an understanding of the patient work system has been increasing in the field of Ergonomics and Human Factors, the role of informal caregivers (unpaid, nonprofessional caregivers) within the patient work system remains largely unexplored (Holden, Schubert, & Mickelson, 2015; Holden, Valdez, Schubert, Thompson, & Hundt, 2017). Informal caregivers include the family members and friends of persons with dementia (PwD), or anyone else who is unpaid, and a non-professional caregiver for a PWD(Reinhard, Given, Petlick, & Bemis, 2008). Nevertheless, informal caregivers are often unsupported and lack guidance with caregiving activities(Alrashed, 2017; Bossen, Christensen, Grönvall, & Vestergaard, 2013). This study represents a first step to define the work of informal caregivers, identify variations in caregiver involvement across multiple caregivers, and explore the perceptions of the primary caregiver (PC) regarding the care network. Understanding the specific roles and work associated with providing care can help us to support and prepare future and current informal caregivers on how to overcome barriers in the work system and increase quality of care for the PwD. Methods Semi-structured interviews were used to encourage 20 self- identified primary caregivers to discuss their daily experiences in providing care to a PwD. Interview questions related to: 1) the daily activities of informal caregivers; 2) the strategies, tools, and resources used and developed by informal caregivers to manage caregiving responsibilities; 3) unmet needs in providing care; and 4) the context in which informal caregiving occurred. We used a thematic analysis with the goal of understanding informal caregiving roles in the PwD work system. Guided by the research questions, structural coding of passages in the transcripts was performed by two members of the research team. The team also mapped the caregiver networks to understand the differences in each role network level. Results The results revealed that the work of informal caregivers of PwD consists of a wide range of tasks that can be physically challenging as well as mentally and emotionally burdensome. Our analysis also revealed distinct variations in care networks and primary caregiver perceptions of other themes: 1) informal caregivers operate at three role levels of care within the care network; 2) PwD care networks vary greatly in size and relationships, and 3) PCs act as gatekeepers to the care network. Caregivers were mapped across three levels of the PwD's care network based on frequency of interactions with the PC and PwD, communication patterns, and contributions to the care activities. Care networks varied between 2 and 11 caregivers who contributed to the care activities in some capacity. The relationships between caregivers and PwD varied greatly, including spouses, children, siblings, neighbors, and volunteers. Further, we found that there is usually one PC for every PwD. The PC acts as a gatekeeper to the care network by regulating interactions between other caregivers and the PwD. The PC also had different expectations for each caregiver based on their relationship to the PwD. Discussion This research presents preliminary findings on the roles of informal caregivers of persons with dementia. These results warrant further investigation into role delineation, primary, secondary, and tertiary caregiver expectations, and the full conceptualization of caregiver work. A formal network analysis that maps caregiver activities to specific roles may be beneficial to understand all the contributions to the care network. These findings are valuable to inform patient work system design in informal care settings. Currently, there is a lack of guidance on how informal caregivers should coordinate care for patients with chronic illness in their homes, and a lack of support for these informal care activities. Defining caregiver work and understanding caregiver perceptions of work can pave a path towards designing better patient work systems to connect the network more efficiently, while improving care quality in informal settings.

Introduction : Integration of care services is crucial for high quality elderly care. Multidisciplinary primary care networks who deliver integrated care to frail elderly consists of general practitioners, home care professionals, nursing home physician specialists, elderly counsellors, physiotherapists and others. It is known that soft factors of cooperation can influence the quality of care positively. However, little is known about the way in which patients experience soft factors such as culture (shared values), professionalism, team spirit and leadership. More is known about hard factors of cooperation. These factors regard to participants in the networks, interconnecting between participants and the strength of these correlations. In this research project we experimented whether it was possible to make professional care networks with frail elderly and reflect on hard and soft factors of collaboration. Methods : We selected four primary care networks, which were known for their innovative way of organizing elderly care. From these, we interviewed 44 frail elderly about the composition and functioning of their care network. During these interviews, we used questionnaires to map background characteristics. In open questions we related to soft elements of cooperation between professionals. We asked the respondents about the hard factors of cooperation using a social network map. They were asked about the participants in their professional care and welfare network (including their most important informal care giver), the frequency of contact with the care professionals, the quality of the contact, cooperation between the members of the network and the quality of the co-operation. The interviews we transcribed verbatim and analyzed qualitatively with Atlas-ti 7.1.. The quantitative data were processed and analyzed with SPSS. The information about the professional networks of the elderly was analyzed using SPSS, entered into Excel and processed into network figures using UCINET. Results : We were able to analyze 44 interviews (male/female 30%/70%, average age 84). The care networks consisted in average of nine care and welfare professionals. The frail elderly were well able to respond to questions about the hard factors of cooperation . They were able to mention the most important participants in their care networks spontaneously and reflect on their cooperation. Questions about the quality of cooperation proved difficult to answer. The GP is for frail elderly the central person in care. Most frequently, cooperation between the GP and home care professionals is mentioned. Elderly observe less cooperation from the GP with the physiotherapist and the welfare professionals. The cooperation between the GP and the informal care givers differs between the four care networks (25-50%). We found a little over one thousand quotes about soft factors of cooperation. It proved easier for the respondents to reflect on the quality of professionals and patient centeredness then on the way in which professionals work together or culture in multidisciplinary teams. One third of the respondents could tell us something about the existence of multidisciplinary team meetings. Only three elderly were able to tell us in detail about the cooperation between professionals. Perceived quality of care was found to correlate with the experienced continuity of care. Negative experiences correlated with the absence of continuity in home care. Experienced continuity between the GP and the district nurse correlated positively with quality of care. We didn’t find a relation between the presence of a care coordinator and the experienced continuity of care. Discussion : It is possible to draw up professional care networks with frail elderly. With help of a trained interviewer they are able to tell something mainly about the ‘hard’ factors. Often, an overview of the organisation of their care is missing. It turned out to be difficult for respondents to tell us something about the soft factors of cooperation. Respondents usually related to questions on this matter in terms of an impression. It is easier to tell something about practical cooperation shown by references, letters, sometimes consultations on coordination of care. Much of what happened behind the scenes eludes the eye of the elderly. Conclusion : This study was a case study and an experiment in gaining more insight in the way which frail elderly perceive hard and soft factors of collaboration. A next step would be to follow up the multidisciplinary teams in their improvement of integrated care for frail elderly, based on the outcomes of the interviews with their patients in a participatory action research approach.

Objectives Older care recipients have different types of care networks, varying from spouse-only to large mixed care networks, that add to different levels of wellbeing. Applying Self-Determination Theory (SDT) to the care context, we argue that the care network composition may foster or hamper the three basic needs for wellbeing: relatedness, autonomy and competence. Method Data are from ten observations between 1992 and 2022 of the Longitudinal Aging Study Amsterdam (N = 18,434 observations from 4,837 older Dutch adults). Five care network types are used: no care, partner, informal, formal or privately paid care. Mixed-hybrid-multilevel regression analysis of depressive symptoms as measure of wellbeing is applied on care network type and loneliness, mastery and care sufficiency as indicators of the three basic needs for wellbeing. Results Receiving care from a partner care network is, compared to the formal care network, the most negatively associated with depressive symptoms, followed by informal care and privately paid care. Differences in care network types existed in loneliness and care sufficiency, but not in mastery, and in part explained the association between care network types and depressive symptoms. Results of between and within effects are comparable. Conclusion Using a rich data set and advanced methodology support the hypotheses that formal care networks hamper wellbeing due to insufficient care and increased loneliness, in particular compared to partner and informal care. The role of mastery was less important, possibly because it does not measure care related level of control.