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

Abstract

ObjectiveTo 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 designParticipants, 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.ResultsA 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.ConclusionResearchers 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.

An online survey to assess parents' preferences for learning about child health research

“…In our study, participants did not prefer to hear about new studies through a mailed pamphlet, but rather during a visit with their child's healthcare provider or through existing general practitioner (GP), school or community centre newsletters and bulletin boards, suggesting the importance of communicating efficiently through existing, trusted organizations. This communication approach has been supported in other research studies (Cruz et al, 2014;Harrigan et al, 2014;Peay et al, 2018;Tracey et al, 2020;Williams et al, 2018). Research nurses and team members need time to build relationships with healthcare professionals, who can be gatekeepers to patient recruitment (Hernon et al, 2020), as well as to identify and connect with relevant educational and community organizations to share study purpose and communication materials.…”

“…There is a major gap in the evidence base on effective recruitment strategies for research studies (Bower et al, 2014) and successful recruitment requires a variety of approaches (Williams et al, 2018).…”

“…There is a major gap in the evidence base on effective recruitment strategies for research studies (Bower et al., 2014 ) and successful recruitment requires a variety of approaches (Williams et al., 2018 ). Lack of awareness about research studies is one of many barriers to recruitment (Massett et al., 2017 ).…”

“…Research is needed on how to communicate study information to potential and active participants and their families throughout the research process (Avins & Goldberg, 2007 ; Denhoff et al., 2015 ; Massett et al., 2017 ). Within child health, parents can be gatekeepers to their children's access to study information, and understanding their communication preferences can help to optimize recruitment and retention strategies (Coyne, 2010 ; Peay et al., 2018 ; Williams et al., 2018 ). Incorporating these preferences into research information and communication strategies may increase awareness of the importance of research and help parents make informed decisions about involving their child in research (Avins & Goldberg, 2007 ).…”

Early Onset of Autoimmune Diabetes in Children with Down Syndrome—Two Separate Aetiologies or an Immune System Pre-Programmed for Autoimmunity?

“…It remains unclear why some develop autoimmunity and others do not. We have therefore initiated the Feeding and Autoimmunity in Down Syndrome Evaluation study (FADES) [ 83 ], a longitudinal birth cohort of children with DS, which will be key to determining early life impacts on risk of progression to autoimmunity in DS.…”