Exploring the needs and wishes of next of kin for future reablement programs: a qualitative study

Abstract

Introduction: Reablement promotes independent living among older people by, amongst other strategies, involving their social network. However, previous studies have shown that next of kin are seldom involved in the reablement process, and when they are, they are insufficiently supported, often resulting in a higher experienced burden. Little is known how next of kin can be involved and supported more effectively in the reablement process. Therefore, in this study we studied the experience of next of kin, who care for somebody who has been temporarily admitted to a geriatric rehabilitation facility since it, as reablement, focuses on regaining skills and independence in meaningful activities. We aimed to get an in-depth understanding of the types of support next of kin receive, how they experience this, which support they value most, and what could be improved.
 Material and methods: A qualitative exploratory design was used. A purposive sample of next of kin caregivers of people temporarily admitted to a geriatric rehabilitation facility. Semi-structured interviews were conducted until data saturation was reached. If possible informal caregivers were interviewed two times; first during the stay of their relative at the GR facility, and second 4 to 6 weeks after discharge. A thematic analysis approach was used to analyze the data, combining open, axial and selective coding in an iterative manner.
 Results: Three themes became apparent during the analyses; 1) their role and experience as an informal caregiver; 2) support they received and how they experienced this; and 3) their needs and wishes regarding the support they/their relative receive. Next of kin found it self-evident that they took on the role of caregiver, although they expressed that getting that role rather suddenly is stressful and frustrating. If caregivers had to work, work played an important role in terms of support, but also in experienced burden. They indicated that they do not receive a lot of support from care professionals involved in the care for their relative, but they also do not expected this from them. A permanent contact person was experienced as helpful and pleasant. Most participants indicated few to none needs and wishes regarding support, again because they do not expect additional support.
 Conclusions: In general, next of kin expressed that they experience a lot of stress and frustration throughout the rehabilitation process. Regarding the support and involvement in the care process, experiences were mixed. It became apparent that next of kin are often unaware that they are entitled to receive additional support and to play a role in the care process of their relative.
 Implications: The results of this research may inform the development of future reablement programs on how they should integrate adequate support for next of kin, and the role next of kin can play in the reablement process. It remains a challenge to make next of kin aware that there are opportunities for support and that they are entitled to receive this.