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)

Valerie Smith* (Corresponding Author), Margarita Corry, Declan Devane, Shaun Treweek, Andrew Hunter, Susanne Grylka-Baeschlin, Kathleen Hannon

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Family members, or others, often assume the role of informal (unpaid) carers of people with chronic illnesses. Care-giving, however, can impact profoundly on the quality of life of carers and can cause carer worry, stress and guilt. Implementing interventions that positively affect the lives of carers is important; however, carers as a group are often difficult to reach. We embedded a study within a pilot-feasibility trial of a mindfulness based intervention to determine and prioritise the key motivators and challenges influencing informal carers’ decisions for participating in a trial.

Methods: We used a multi-method approach involving interviews with participants from a ‘host trial’ and data from systematic reviews to develop a survey that was distributed to informal carers in Ireland. The survey consisted of 28 motivator and 17 challenge statements. Participants rated how important they thought each statement was when deciding to take part in a trial on a 5-point Likert Scale. Mean scores and standard deviations were calculated for each statement and arranged in descending order to provide the priority lists.

Results: Thirty-six carers responded to the survey. Helping to create awareness about carers was the top ranked motivator, followed by four study design statements related to the time at which the study occurs, the study location, format of delivery and venue. The least important motivator related to how carers were invited to take part in a study. Difficulties in planning due to the caring role emerged as the most important challenge, followed by being unable to leave the care recipient on his/her own.

Conclusions: Insight into decision-making for research participation will assist trial developers tailor trial processes for informal carer populations. We recommend that trialists should consider these motivators and challenges when designing future trials involving informal carers so as to enhance trial feasibility and success.
Original languageEnglish
Article number71
Number of pages17
JournalHRB Open Research
Volume3
Early online date28 May 2021
DOIs
Publication statusPublished - 28 May 2021

Bibliographical note

Grant information
The study is funded by the Health Research Board Trials Methodology Research Network (HRB-TMRN) SWAT Awards 2017, Award No: 14965.

Acknowledgements
We sincerely thank the carers for their time in taking part in this study. We thank Family Carers Ireland for their assistance in distributing the survey link through their Facebook page.

Data Availability Statement

Data availability
Underlying data
Access to interview transcripts are restricted under Research Ethics Committee approval as even de-identified transcript data may contain information that could potentially identify a participant based on statements made, phrasing, or personal data contributions which presents a potential breech in GDPR assurances. Transcripts may be made available, in full or in part, on individual request and only with the explicit permission of an interviewee based on the acceptability of the nature and reason for the request. Such requests such be made to the corresponding author (smithv1@tcd.ie) in the first instance.

This project contains the following underlying data:
- SWAT 55 Survey (participant responses).xlsx

Extended data
Zenodo: SWAT 55 survey and dataset. https://doi.org/10.5281/zenodo.402938527.

This project contains the following extended data:
- Interview Schedule.docx
- SWAT Survey (Final Version).pdf

Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).

Keywords

  • Study Within A Trial
  • informal carers
  • survey research
  • trial participation
  • trial design

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