What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

Abstract

Plain English summary Around 1.3 million adults in Sweden give help, support and care to an ill, aged or disabled family member, neighbour or friend. As informal carers contribute a lot to our societies, it is important to recognise them and, where possible, to involve them in research that affects them, together with patients and professionals. The rationale for our study is the current lack of studies on carers’ views of being involved in research. 147 carers aged 60+, or who were caring for a person 60+ answered a survey that asked about carers’ motivations for and obstacles to being actively involved in research. By actively involved, we mean that participation was more than filling in a questionnaire or one single interview. We found that carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves. Older age was the only characteristic associated with less interest of being actively involved. A statistical test showed two motivational categories; ‘family motivation’ and ‘the greater good motivation’. These almost equally valued categories described the different reasons for carers to become involved in research. The most common obstacle was lack of time and more women than men reported this. This study adds new knowledge about carer involvement in research. The results of our study could help researchers to create a more supportive climate for actively involving carers in research. For example, by finding more flexible and creative ways to recruit carers and carry out research with them.

Keywords

• Informal carers
• Research involvement
• Heterogeneity
• Motivation
• Obstacles