[The involvement of older adults in the residential care: dilemmas, pitfalls and potentials]. / Betrokken bewoners in het verpleeghuis: dilemma's, knelpunten en kansen.

In the residential care sector we have witnessed throughout the previous decades a development from a rather paternalistic approach towards a more democratic way of care giving. In many care organizations, however, residents are still rarely involved in the daily routine. In a participatory study on a somatic care unit in the Netherlands, we examined the challenges around the involvement of residents in the care residence. We organized two homogeneous group sessions, with staff and residents separately; reflected on new ways for involving residents; and concluded with a heterogeneous focus group, bringing staff and residents together. Both staff and residents recognized the importance of resident involvement in daily care. However, the difference in perspective on what this should look like created challenges. We found three dilemmas that made the engagement of residents challenging: autonomy versus dependence, personal experiences versus privacy, and happiness versus honesty. We found different ways staff and residents dealt with these dilemmas in practice and defined them in terms of bottlenecks and opportunities. Attention to these dilemmas, pitfalls, and potentials, promotes mutual understanding and ultimately resident involvement in daily care.

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15-17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs' mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs' conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

Quality of Life of Schoolchildren Living with a Long-Term Sick Parent: The Role of Tasks at Home, Life Circumstances and Social Support.

This study investigates whether there are differences in quality of life-i.e., psychosomatic complaints and life satisfaction-between schoolchildren with and without a chronically ill or disabled parent at home. It also examines the role played by the intensity of tasks, life circumstances, and social support at home and school. In 2017, a Dutch representative sample of adolescents aged between 12 and 16 (from the Health Behaviour in School-aged Children study) completed a questionnaire about illness of family members, tasks at home, life circumstances and characteristics, social support, psychosomatic complaints and life satisfaction. In total, 5470 schoolchildren who did not have a parent with a chronic illness and 652 who did have a parent with a chronic illness were selected (average age 13.9). Stepwise multilevel logistic regression analyses in STATA were used. Schoolchildren with an ill parent had more psychosomatic complaints and lower life satisfaction than their counterparts without an ill parent, even when controlling for extra task hours, specific life circumstances and characteristics (e.g., more likely to be growing up in a single-parent family or stepfamily and more likely to be female), and lower perceived support. These aspects are also predictors of a lower quality of life. Professionals should address these aspects of the life of schoolchildren with a sick parent in such a way that they are facilitated to make a successful transition to adulthood.

Older Adults' Engagement in Residential Care: Pitfalls, Potentials, and the Role of ICTs.

Over the previous years, the residential care sector has gone through a transition from a rather paternalistic approach towards a more democratic way of caregiving. Nevertheless, many care organizations still find it challenging to engage their residents in the process of care. In this study, we investigated the challenges regarding the engagement of older adults in residential care. As recent studies indicated the increasing opportunities of ICTs, we paid particular attention to this in the process of engagement. We followed a participatory action research approach among caregivers and older adults at a somatic care department in a care residence in the Netherlands. Methods used included 15 participants in two homogeneous group sessions, reflections on action in practice, and one mixed focus group. Our findings show that both caregivers and older adults acknowledge the importance of engagement in daily care. However, their different perspectives on how this should take place, made the actual engagement of older adults a challenge. We determined three dilemmas complicating this engagement in care, and labeled these (1) autonomy versus dependence; (2) personal experiences versus privacy; and (3) happiness versus honesty. We found different ways of how caregivers and older adults deal with these dilemma's in practice and defined these in terms of pitfalls and potentials. ICTs were shown to reinforce both the pitfalls and potentials. Paying attention to these challenges in residential care, including how caregivers and older adults deal with these challenges, will encourage a mutual understanding and actual engagement in decisions on daily care. Further research is recommended on the role of organizations' management, older adults' relatives, or older adults with cognitive impairments.

Home care for terminally ill patients: the experiences of family caregivers with and without paid work.

OBJECTIVES: To facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work. METHODS: We used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292). RESULTS: Working family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully. CONCLUSIONS: Working and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.

How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?

BACKGROUND: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. OBJECTIVE: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes. DESIGN: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. MEASUREMENTS: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. RESULTS: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. CONCLUSIONS: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

Individual determinants of task division in older adults' mixed care networks.

Older adults in need of long-term care often receive help from both informal and formal caregivers. The division of tasks between these different types of caregivers may vary among such mixed care networks. Traditional models of task division suggest that formal and informal caregivers may either supplement each other or specialise in the care activities performed. Our study explores the determinants of various forms of task division in the Netherlands, using data collected in 2007 on 458 mixed care situations. Four types of task divisions of informal and formal care are distinguished: the complementation model [neither Activities of Daily Living (ADL) nor instrumental ADL (IADL) tasks shared, 14%], the supplementation model (both ADL and IADL tasks shared, 39%) and informal and formal specialisation (one type of task shared, one type of task not shared, 27% and 20% respectively). Marginal effects calculated with multinomial regression analyses show that the intensity of care provision, the informal caregivers' motives and the presence of privately paid help - more than care receiver's health - are related to type of task division with formal care. For example, when the informal caregiver provides more hours of help and out of a strong personal bond, the likelihood of informal specialisation increases, whereas the likelihood of formal specialisation decreases. When privately paid help is present, the complementation model is more likely, whereas the supplementation model is less likely to be found. Results are discussed regarding the differential consequences for co-ordination and co-operation in mixed care networks.

Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work.

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.