On making the invisible visible : A qualitative study of care partners of older people with mental health problems and home care services

Abstract

The concept of Ageing in place implies that efforts are made to allow people to live at home for as long as possible. This is a political goal in aging policy, where care partners and home care services play significant roles. Due to this policy, older people live longer at home with increasingly complex disease states, both physical and mental. Hospitalisations are fewer, and the number of days spent in hospital has dropped. Consequently, responsibilities have increasingly shifted to home care services and care partners. In particular, the care partners of older people with mental health problems face major challenges, and they often feel unsupported in their role. Furthermore, there are indications that the collaboration between home care services and the care partners of older people with mental health problems does not function satisfactorily. The home care districts in this thesis are organised in accordance with efficacy norms and New Public Management (NPM) principles that create difficulties for staff and challenge their professional autonomy. Moreover, home care services’ capacities are limited, and they struggle to meet legislative requirements and expectations. The study takes place in the context of the Norwegian welfare state and is approached from a person-centred perspective. The two primary objectives are 1) to develop knowledge about the needs of care partners of older people with mental health problems and 2) to explore the collaborative relationship between the care partners of older people with mental health problems and home care services through the perspectives of care partners, home care staff and leaders in home care services. To answer these questions, this thesis examines the kind of support the care partners say they need, their experiences with being caregivers and, finally, how home care leaders and staff experience their collaboration with care partners. This introductory chapter2 sets out to explore factors that enable and hinder the establishment of a well-functioning collaboration between care partners and home care services.

This thesis includes three studies (I–III). Study I is a systematic review that identifies and synthesises the needs of care partners of older people living at home with assistance from home care services. In Study II, the lived experiences and support needs of care partners of older people with mental health problems are explored through in-depth interviews with care partners. Study III evaluates whether a focus on personhood could help explain the collaborative relationship between home care staff and care partners; this is carried out through focus group interviews with home care staff and individual interviews with the leaders of these services.

Study I includes 16 reviewed studies; three main categories emerge from the analysis: the need for quality interaction, the need for a shared approach to care and the need to feel empowered. The findings show that care partners have several, continuously unmet needs. Furthermore, a knowledge gap concerning the care partners of older people with mental health problems in home care services is identified. The results from Study II reveal that few or no consistent avenues for collaboration exist between home care services and the care partners of older people with mental health problems, and that the care partners seem to have little knowledge of their legal rights; they request more information, spare time and the opportunity to remain in their original family role. However, their primary concern is that the patient receives the necessary help from home care. Study III demonstrates home care staff and care partners of older people with mental health problems do not engage in satisfactory collaborative relationships. There appears to be lack of facilitation of collaborative relationships throughout all levels of the home care organisation, producing situations in which neither the personhood of the care partners nor the staff members are respected.

Together, the studies indicate that the collaboration between home care staff and the care partners of older people with mental health problems often does not function satisfactorily. Under the prevailing conditions, home care staff find it difficult to fulfil all their obligations, including meeting the needs of care partners. The staff must be capable of identifying and meeting the needs of care partners, but first and foremost, they need an organisational framework that allows them to accomplish their duties. A rethinking of how to fill the gap between the espoused values of the organisation and the reality of everyday practice is required. The implementation of person-centred practice in home care services can help staff to establishment of a well-functioning collaboration to better meet the needs of care partners of older people with mental health problems.