Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

Abstract

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 collaboration between informal caregivers and professionals. Professionals are assumed to 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 informal caregivers 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.

The care receivers perspective: How care‐dependent people struggle with accepting help from family members, friends and neighbours

“…Zapart, Kenny, Hall, Servis, & Wiley, ), focuses on divisions of responsibilities between informal caregivers and professionals (e.g. Jacobs, Broese van Groenou, Boer, & Deeg, ; Wittenberg, Kwekkeboom, Staals, Verhoeff, & Boer, ) and provides insight into the intentions to give care from the caregivers’ perspective (e.g. Broese van Groenou & De Boer, ).…”

Assessment of functional health literacy in Brazilian carers of older people

“… 10 Additionally, family carers can be instrumental in navigating fragmented care systems on behalf of older relatives, 15 and see their role as organizing care and transferring information between stakeholders. 16 This role becomes even more important as the global population ages and hospital lengths of stay shorten, requiring older patients and their carers to assume more of the “burden of treatment” in the community. 17 …”

Trust in older persons: A quantitative analysis of alignment in triads of older persons, informal carers and home care nurses

“…Today, older persons are increasingly expected to manage their own health care and life (Hengelaar et al, ). This emphasis on self‐management fits the policy trend in many western European countries to reduce institutionalised secondary care and encourage older persons to live at home for as long as possible in order to contain excessively growing healthcare costs (Broese van Groenou, Jacobs, Zwart‐Olde, & Deeg, ; Dahlberg, Demack, & Bambra, ; Kutzleben, Reuther, Dortmann, & Holle, ; Wittenberg, Kwekkeboom, Staaks, Verhoeff, & Boer, ). Self‐management can be defined variously (Barlow, Wright, Sheasby, Turner, & Hainsworth, ; van Hooft, Dwarswaard, Jedeloo, Bal, & van Staa, ).…”