ArticleResearch involvement and engagement2021
What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
Article in Research involvement and engagement, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Supporting older people through Hospital at Home care: a systematic review of patient, carer and healthcare professionals' perspectives.Age and ageing · 2025Pooled it
- Participatory research with carers: A systematic review and narrative synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Developing and Evaluating an Inpatient Caregiver Support Program: Feasibility, Acceptability, and Perceived Impact.Mayo Clinic proceedings. Innovations, quality & outcomes · 2026Article
- Article
- Validation of the Psychometric Properties of the German Version of OBI-Care in Informal Caregivers of Stroke Survivors.Journal of clinical medicine · 2025Article
- Outputs from a model of co-research with older care-experienced people in Sweden to advance eldercare services.Research involvement and engagement · 2024Article
- An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken.Research involvement and engagement · 2024Article
- What motivates public collaborators to become and stay involved in health research?Research involvement and engagement · 2024Article
- A balance between putting on the researcher's hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research.Health research policy and systems · 2022Article
- User involvement in ageing and health research: a survey of researchers' and older adults' perspectives.Health research policy and systems · 2022Article
- A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".Research involvement and engagement · 2022Article
- Awareness of and attitudes towards public involvement in research on ageing and health among older people in Sweden.PloS one · 2022Article
- Prioritising key motivators and challenges influencing informal carers' decisions for participating in randomised trials: An embedded Study Within A before and after Trial (SWAT 55).HRB open research · 2020Article
Corrections and comments
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Authors and funding
6 authors.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.