Perceptions of non-successful families attending a weight-management clinic.

OBJECTIVE: This study seeks to understand family's perceptions of their care at a paediatric weight management service, with a view to informing service improvement. DESIGN: A qualitative service review conducted via semistructured interviews with parents (n=11) and children (n=3) who attended the clinic. The recruitment was open to all, but those who were not succeeding in their weight-loss goals self-selected to participate. Self-Determination Theory was used as a framework to explore families' experiences of the clinic. SETTING: Recruitment occurred during clinical appointments and interviews were conducted over the phone in the days following the appointments. PATIENTS: The service sees paediatric patients with a body mass index >99th percentile, with comorbidities or safeguarding concerns. INTERVENTIONS: The clinic's service includes appointments typically every 2 months, with a multidisciplinary team including consultant endocrinologists, a dietician, a clinical psychologist, a social worker and a clinical nurse specialist. MAIN OUTCOME MEASURES: Families' feedback on the multi-disciplinary team (MDT) clinic, and their perceptions of how improvements could be made. RESULTS: Families perceive a lack of autonomy, competency and feel a lack of connectivity both in their lives broadly and within their experience at the clinic. CONCLUSIONS: Interventions in families struggling with weight improvements should see the clinical team placing more emphasis on working alongside parents to develop young people's sense of self-determination. Expectations must be set that success originates from changes outside of clinical appointments and that the clinical team is in place to support the family's development of sustainable, self-determined lifestyle habits.

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

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.