BACKGROUND: Informal care is an essential part of support provided in the homecare setting. To ensure effective healthcare provision, good communication and collaboration between informal and formal care providers are crucial. To achieve this aim, it is necessary to have a clear understanding of the perspectives of all stakeholders. In the scientific literature, limited knowledge is available regarding family members' opinions about their involvement in care. To date, no instruments have been developed that accurately measure these opinions. This study aims to elucidate the opinions of family members about their involvement in nursing care.METHODS: A cross-sectional survey approach was employed. The methodological steps in this study were (1) convert the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) from a nurses' perspective to a family perspective and thus develop the Families' Importance in Nursing Care-Families' Opinions (FINC-FO) and (2) measure families' opinions regarding their involvement in home nursing care. The questionnaire was sent to 3,800 patients with activated patient portals, which accounts for about 17% of the total patient base. Responses were received from 1,339 family members, a response rate of 35%.RESULTS: The developed FINC-FO questionnaire showed homogeneity and internal consistency. The results of the questionnaire indicate that family members consider it important to be involved in care and that they wish to be acknowledged as participants in discussions about care (planning) but are less inclined to actively participate in the provision of care by nurses. Family members expressed less explicit opinions about their own support needs. Factors such as level of education, type of partnership, and amount of care provided are seemingly associated with these opinions.CONCLUSIONS: Family members in the homecare setting wish to be involved in discussions about care (planning). The transition in care from primarily formal to more informal care necessitates an awareness and clear definition-on part of both healthcare professionals and families-of their respective roles in the provision of care. Communication about wishes, expectations, and the need for support in care is essential to ensure quality of care and that the family can sustain caregiving.
This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one’s euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again. Four themes were identified using thematic analyses: (1) Protecting the relationship from the impact of dementia; (2) Private domain as the primary setting to discuss euthanasia; (3) Implicit expectation to respect and agree with the euthanasia wish; (4) Experienced responsibilities of family regarding the euthanasia wish. Professionals should be aware of the position of family and the interrelatedness of the person’s concern for family happiness and families’ moral commitment to agree and support the wish.
Several interventions have been developed to support families living with parental mental illness (PMI). Recent evidence suggests that programmes with whole-family components may have greater positive effects for families, thereby also reducing costs to health and social care systems. This review aimed to identify whole-family interventions, their common characteristics, effectiveness and acceptability. A systematic review was conducted according to PRISMA 2020 guidelines. A literature search was conducted in ASSIA, CINAHL, Embase, Medline, and PsycINFO in January 2021 and updated in August 2022. We double screened 3914 abstracts and 212 papers according to pre-set inclusion and exclusion criteria. The Mixed Methods Appraisal Tool was used for quality assessment. Quantitative and qualitative data were extracted and synthesised. Randomised-control trial data on child and parent mental health outcomes were analysed separately in random-effects meta-analyses. The protocol, extracted data, and meta-data are accessible via the Open Science Framework (https://osf.io/9uxgp/). Data from 66 reports—based on 41 independent studies and referring to 30 different interventions—were included. Findings indicated small intervention effects for all outcomes including children’s and parents’ mental health (dc = −0.017, −027; dp = −0.14, −0.16) and family outcomes. Qualitative evidence suggested that most families experienced whole-family interventions as positive, highlighting specific components as helpful, including whole-family components, speaking about mental illness, and the benefits of group settings. Our findings highlight the lack of high-quality studies. The present review fills an important gap in the literature by summarising the evidence for whole-family interventions. There is a lack of robust evidence coupled with a great need in families affected by PMI which could be addressed by whole-family interventions. We recommend the involvement of families in the further development of these interventions and their evaluation.
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