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Abstract
Objective To understand how to maximise recruitment of young infants with Down’s syndrome (DS) into research through qualitative interviews with parents and care providers. In complex neonatal and genetic conditions such as DS, frequently diagnosed after birth, parents may go through a period of adaptation. These factors need consideration when overcoming barriers to recruitment.
Participants and design Participants, who were drawn from health professionals and volunteers working with families experiencing DS, were recruited using a purposive sampling strategy. Semistructured telephone interviews were completed with nine paediatricians, three research nurses and six family support workers. Five of those interviewed had a child with DS. The interviews were transcribed and analysed thematically.
Results A positive decision to take part in a ‘from-birth’ cohort study depends on factors such as the child’s overall health, parent demographics (educational background and ethnicity), medical interactions that take place with the families (communication) and study logistics. The data suggest that recruitment methods need to take all these factors into consideration. Multiple recruitment methods should be considered including face to face, through parent and support groups, websites and social media. There also needs to be flexibility in the research timings to fit around the needs of the child and parents.
Conclusion Researchers need to be aware of the variable responses elicited by families to a diagnosis of DS for their baby and be sensitive to the child’s current medical status. This does not preclude recruitment into studies, but to maximise uptake good communication and flexibility is essential.
- down’s syndrome
- recruitment
- qualitative research
- comm child health
- birth cohorts
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Footnotes
Contributors GMW conceptualised and designed the study, carried out the qualitative interviews, completed analysis, drafted the initial manuscript and edited and approved the final manuscript as submitted. AJS conducted the analysis together with GMW, reviewed and revised the manuscript and approved the final manuscript as submitted. PN helped to develop the design of this qualitative study, reviewed and revised the manuscript and approved the final manuscript as submitted. JPH-S originally developed the idea of the FADES cohort study, supervises GMW, reviewed and revised the manuscript and approved the final manuscript as submitted. SDL and KMG supervise GMW and reviewed and approved the final manuscript as submitted. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding QThis study was funded by The NIHR Bristol Biomedical Research Centre, Nutrition Theme.
Disclaimer This is an independent opinion from a Biomedical Research Centre in the National Institute for Health Research Biomedical Research Centre Funding Scheme. The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research or the Department of Health.
Competing interests None declared.
Patient consent Obtained from all the participants.
Ethics approval The study was approved by the South West Central Bristol Research Ethics Committee (14/SW/0030).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Any unpublished data may be requested from the corresponding author.