What factors influence recruitment to a birth cohort of infants with Down's syndrome?

Georgina M. Williams*, Patricia Neville, Kathleen M. Gillespie, Sam D. Leary, Julian P. Hamilton-Shield, Aidan J. Searle

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)

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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.

Original languageEnglish
Pages (from-to)763-766
Number of pages4
JournalArchives of Disease in Childhood
Volume103
Issue number8
Early online date8 Mar 2018
DOIs
Publication statusPublished - 1 Aug 2018

Keywords

  • birth cohorts
  • comm child health
  • down's syndrome
  • qualitative research
  • recruitment

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    NIHR BRC Nutrition

    Ness, A. R.

    1/04/1731/03/22

    Project: Research, Parent

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