Purpose: To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation. Methods and Materials: We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis. Results: The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data. Conclusion: During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.
The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers’ judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1–4 scale on ‘caregiver judgement’ (α = 0.69) and used caregivers’ personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers’ judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers’ judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers’ experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care.
This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaborationbetween informal caregivers and professionals. Professionals are assumedto adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informalcaregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.
Dutch society faces major future challenges putting populations’ health and wellbeing at risk. An ageing population, increase of chronic diseases, multimorbidity and loneliness lead to more complex healthcare demands and needs and costs are increasing rapidly. Urban areas like Amsterdam have to meet specific challenges of a growing and super divers population often with a migration background. The bachelor programs and the relating research groups of social work and occupational therapy at the Amsterdam University of Applied Sciences innovate their curricula and practice-oriented research by multidisciplinary and cross-domain approaches. Their Centres of Expertise foster interprofessional research and educational innovation on the topics of healthy ageing, participation, daily occupations, positive health, proximity, community connectedness and urban innovation in a social context. By focusing on senior citizens’ lives and by organizing care in peoples own living environment. Together with their networks, this project aims to develop an innovative health promotion program and contribute to the government missions to promote a healthy and inclusive society. Collaboration with stakeholders in practice based on their urgent needs has priority in the context of increasing responsibilities of local governments and communities. Moreover, the government has recently defined social base as being the combination of citizen initiatives, volunteer organizations , caregivers support, professional organizations and support of vulnerable groups. Kraktie Foundations is a community based ethno-cultural organization in south east Amsterdam that seeks to research and expand their informal services to connect with and build with professional care organizations. Their aim coincides with this project proposal: promoting health and wellbeing of senior citizens by combining intervention, participatory research and educational perspectives from social work, occupational therapy and hidden voluntary social work. With a boundary crossing innovation of participatory health research, education and Kraktie’s work in the community we co-create, change and innovate towards sustainable interventions with impact.
