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

Camilla Malm,Stefan Andersson,Susanne Iwarsson,Maya Kylén,Steven M Schmidt,Elizabeth Hanson

doi:10.1186/s40900-021-00321-x

Camilla Malm, Stefan Andersson + Show 4 more

Open Access

https://doi.org/10.1186/s40900-021-00321-x

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Abstract

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.

Highlights

User involvement in general has been widely recommended for several decades as a means to improve health and social service provision [1,2,3,4]
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
There has been a dearth of empirical research that has explored the family as a source of motivation

Summary

Introduction

User involvement in general has been widely recommended for several decades as a means to improve health and social service provision [1,2,3,4]. Due to an increasingly strained public sector, people with a need for care, help or support in their home increasingly rely on informal carers; they are commonly spouses, partners, parents, adult children or siblings, but can constitute friends and neighbours They provide unpaid help, support and/or care to a family member or significant other on a regular basis and usually outside of a formal or professional framework [10,11,12,13]. 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

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Results

Discussion

Conclusion