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

Research Involvement and Engagement

Susanne Iwarsson¹  Maya Kylén¹  Steven M. Schmidt¹  Stefan Andersson²  Camilla Malm³  Elizabeth Hanson³ 

[1] Department of Health Sciences, Lund University, P.O. Box 157, 221 00, Lund, Sweden;Department of Health and Caring Sciences, Linnaeus University, 391 82, Kalmar, Sweden;Department of Health and Caring Sciences, Linnaeus University, 391 82, Kalmar, Sweden;Swedish Family Care Competence Centre (SFCCC), Box 681, 391 82, Kalmar, Sweden;

关键词: Informal carers;    Research involvement;    Heterogeneity;    Motivation;    Obstacles;   

DOI  :  10.1186/s40900-021-00321-x

来源: Springer

【 摘 要 】

BackgroundDue 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.MethodsA 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.ResultsOur 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.ConclusionOur 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.

【 授权许可】

CC BY