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Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ.Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between theresearcher and caregiver.Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their ownmental health.Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.
Artikel van Judith Huis in het Veld, docent onderzoeker van de Hogeschool Inholland verschenen in Research in Gerontological Nursing ABSTRACT The current article discusses how and by whom family caregivers want to be supported in selfmanagement when managing changes in behavior and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support. Four asynchronous online focus groups were held with 32 family caregivers of individuals with dementia. Transcripts of the online focus groups were analyzed using qualitative thematic analysis. Family caregivers need support from professionals or peers in the form of (a) information about dementia and its symptoms, (b) tips and advice on managing changes in behavior and mood, (c) opportunities to discuss experiences and feelings, and (d) appreciation and acknowledgement of caregiving. The opinions of family caregivers about self-management support through eHealth were also reported. Findings suggest a personal approach is essential to self-management support for family caregivers managing changes in behavior and mood of relatives with dementia. In addition, self-management support can be provided to some extent through eHealth, but this medium cannot replace personal contacts entirely.
Family nursing conversations (FNC) are planned conversations between a care recipient, one or more family members, and a nurse. FNC, in the Netherlands, are intended to strengthen family functioning and family communication, improve collaboration between family and professional caregivers, and prevent overburden of family caregivers. This study aims to explore families’ experiences with FNC, and their perspectives on the benefits of FNC.Methods: A total of 26 participants (9 care recipients, 17 family members) from 11 families participated in a FNC and this qualitative study. Seven home health care nurses trained in FNC conducted these conversations as part of their daily practice. Four to six weeks after the FNC, care recipients and family members were interviewed about their experiences, and the perceived effects or benefits of the FNC. Interviews were semi-structured, face-to-face, and individual. Data collection continued until saturation had been reached. A grounded theory approach was used to analyze the data.Results: Participants experienced FNC as structured and open communication about the care situation. During the FNC, participants felt that they gained a clear overview of the care situation and that relationships among the FNC-participants improved. Participants reported that FNC decreased family members’ burden, and resulted in care that was more tailored to the care recipient’s needs.Conclusions: From the results of this study a model is proposed for families’ experiences with and perceived benefits of FNC. In a subsequent study, this model will be tested in a quantitative cost effectiveness study with a larger sample.
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