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.
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Challenges in keeping healthcare affordable make informal care increasingly important. It is essential to understand the context in which people provide informal care and gain insight into their wishes with regard to the division of care responsibilities. A total of 37 interviews and eight focus groups were conducted to investigate how Dutch carers’ care attitudes are shaped. Results show that carers’ intersecting social positions, such as gender, migration background, socio-economic status and stage of life, largely influence their care attitudes. Carers want to provide care but experience challenges in doing so. They request a government that takes the lead and facilitates cooperation with professionals.
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Background: Transmural palliative care interventions aim to identify older persons with palliative care needs and timely provide advance care planning, symptom management, and coordination of care. Nurses can have an important role in these interventions; however, their expertise is currently underused. A new transmural care pathway with a central role for the community care registered nurse in advance care planning aims to contribute to the quality of palliative care for older persons. Objective: To examine the perspectives of community nurses on the feasibility of a new transmural care pathway for advance care planning for older persons. Design: A qualitative study design using semi-structured interviews. Setting(s): Interviews were performed with community nurses of three participating homecare organizations in the Netherlands between March and May 2023. Participants: 19 community nurses. Methods: A topic guide was based on (1) challenges in advance care planning identified from the literature and (2) concepts that are important in assessing the feasibility of complex healthcare interventions provided by the Normalisation Process Theory framework. A combined inductive and deductive thematic analysis was performed. Results: Four themes were identified: views on the transmural care pathway, community nurses’ needs to fulfil their role, key points regarding implementation, and evaluation of the new practice. In general, community nurses were positive about the feasibility of the new practice as it provided a more structured work process that could facilitate interprofessional collaboration and improve the quality of palliative care. Overall, the feasibility of the new practice, from community nurses perspective, was determined by (1) clear roles and responsibilities in the transmural care pathway, (2) standardized registration of advance care planning, and (3) close involvement of community nurses in the whole implementation process. Conclusions: We highlighted important factors, from the perspectives of community nurses, that need to be considered in the implementation of a new transmural care pathway for advance care planning. A clear division of roles and responsibilities, standardized registration of advance care planning, and involvement of community nurses during the whole implementation process were mentioned as important enabling factors. This knowledge might contribute to successful implementation of a transmural care pathway that aims to enhance the quality of palliative care for older persons. Tweetable abstract: Community nurses’ perspectives on the feasibility of a transmural care pathway for advance care planning for older persons.
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