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

Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that affects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers’ perceived motivations and obstacles to become involved in research. A cross-sectional survey design was adopted, using first-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were either aged 60+ years themselves or were caring for someone who was aged 60+ years. Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic significantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: ‘family motivation’ and ‘the greater good motivation’. These, according to our results, almost equally valued dimensions, described the differing reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Our study contributes with new knowledge of informal carers’ perceived motivations and obstacles regarding carer involvement in research. Paying attention to the differing motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact. IRRID (International Registered Report Identifier): RR2-10.2196/17759. 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.