ArticleResearch involvement and engagement2019
Recruitment of caregivers into health services research: lessons from a user-centred design study.
Article in Research involvement and engagement, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis 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
34 citing papers in PubMed, 1 synthesis or guideline pooled it, 83 citations in OpenAlex.
- 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
- Trial
- The Effect of the "Safety in Dementia" Online Tool to Assist Decision Making for Caregivers of Persons With Dementia and Access to Firearms : A Randomized Trial.Annals of internal medicine · 2024Trial
- Feasibility of a digital palliative care intervention (Convoy-Pal) for older adults with heart failure and multiple chronic conditions and their caregivers: a waitlist randomized control trial.BMC palliative care · 2024Trial
- Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2023Trial
- Exploring key stakeholder perceptions on the impact of younger stroke: a multinational, qualitative interview study.BMJ open · 2026Article
- Assessing needs and goals of dementia caregivers: development of the COPE-ING measure.BMC palliative care · 2026Article
- Exploring the role of carers in psychiatric home treatment: qualitative multi-method study.BMC psychiatry · 2026Article
- Article
- Recruitment Challenges and Strategies in a Technology-Based Intervention for Dementia Caregivers: Descriptive Study.JMIR formative research · 2025Article
- Coping with Emotional Distress via Self-Disclosure to Robots: An Intervention with Caregivers.International journal of social robotics · 2025Article
- Article
- Evaluating the effects of the World Health Organization's online intervention 'iSupport' to reduce depression and distress in dementia carers: a multi-centre six-month randomised controlled trial in the UK.The Lancet regional health. Europe · 2025Article
- How Do Researchers Identify and Recruit Dementia Caregivers? A Scoping Review.The Gerontologist · 2024Article
- Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers.Journal of medical Internet research · 2024Article
- Involvement of family caregivers in dementia care research: a scoping review protocol.Systematic reviews · 2024Article
- Citizen involvement in research on technological innovations for health, care or well-being: a scoping review.Health research policy and systems · 2024Article
- Culturally Adapting the World Health Organization Digital Intervention for Family Caregivers of People With Dementia (iSupport): Community-Based Participatory Approach.JMIR formative research · 2024Article
- Article
- Improving heart failure care with an Experience-Based Co-Design approach: what matters to persons with heart failure and their family members?BMC health services research · 2023Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundWith patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods - successful and unsuccessful - that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research.
methodsWe used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers.
resultsEmploying various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work - the time and compromises it requires - has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust.
conclusionsIn addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.
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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.