Older People Making Decisions about Care in Scotland: A Mixed Methods Research Approach

Abstract

Limited information is available as to how older people with higher care needs make decisions about care and resource utilisation based on actual behaviours, and how this influences their quality of life. This research project was set in one local authority (LA) in Scotland with fifteen older participants and eighteen professionals from care homes, day centres, in-home care, hospitals, and technology programmes. In addition, focus groups with twenty-two carers in two lunch clubs were involved in the project. The objectives of the research were to explore views of decision-making by older adults, carers, and professionals. Data included qualitative, quantitative, visual and participatory methods. The techniques used comprised focus groups, interviews, vignettes, photo elicitations, psychometric quality of life measures (QoL), and a reconvened focus group for assistance with research tools and analysis. This research contains topics of influence on older people’s decisions about care and support, participatory and visual methods and policy in practice issues including reablement, self-directed support, and Section 13ZA of the Social Work (Scotland) Act. Findings which suggest that decision-making is non-linear and is based on emotions align with existing research. New findings suggest that a number of influences determine the extent to which older people have control in decision-making, as this is a complex and fluid process. Decisions are not made in isolation. Relationships and support networks play a key role in how older people meet care needs in their decision-making. Three key things were found to be needed for older adults to be included; individuals needed the ability to make decisions, needed the opportunity to make decisions and to be provided with the information to make educated decisions. This led to multiple decision-making styles, which varied depending on the level of involvement of individuals and support people involved in the process - both directly and indirectly on the micro, meso and macro levels. Overall, this study advances understanding of perceptions, attitudes, and behaviours which older people fulfil when receiving formal (paid), informal (unpaid) care, and resource utilisation. This is a multi-faceted process that involves many people. It demonstrates the importance of how understanding the relationship of QoL and decision-making impacts the individual holistically on future policy, practice and resource allocation for older adults.