Experiences of parents whose children participated in a longitudinal follow‐up study

Abstract

Experiences of Parents Whose Children Participated in a Longitudinal Follow-up Study

Franke, N1, Rogers, J1, Wouldes, T2, Ward, K2, Brown, G3, Jonas, M2, Keegan, P3, Harding, J1

1 Liggins Institute, University of Auckland, New Zealand 2 Faculty of Medical and Health Sciences, University of Auckland, New Zealand 3 Faculty of Education and Social Work, University of Auckland, New Zealand

Email: n.franke@auckland.ac.nz

Background: Long-term follow up is necessary to understand the impact of perinatal interventions. Exploring parents’ motives and experiences in consenting to their children taking part in longitudinal studies and understanding what outcomes are important to families may enhance participation and mitigate loss to follow-up. Methods: Data were generated using semi-structured interviews with parents whose children had participated in the Children with Hypoglycaemia and their Later Development (CHYLD) study, involving recruitment to neonatal studies and follow-up at 2, 4.5 and 9 years of age. Parents’ experiences of being part of the study were analysed thematically using an inductive approach. Results: Parents’ (n=16) main motivator for research participation was helping others and they were generally happy with the outcomes measured. Additionally, parents were interested in lifelong goals such as children’s psychosocial development and the impact of parental diabetes. We identified three themes: 1) the wish to take part was influenced by enablers such as discussing potential participation with a fellow participant and good quality study information; 2) the wish to engage in the study was limited by technical research aspects, participation burden, and cultural barriers, and; 3) participation was influenced by the characteristics of the research team. Conclusion: Overall, parents reported positive experiences and described the unexpected benefit of increasing families’ health knowledge through participation. Improvements for current follow-up studies were identified. Different ethnicities reported different experiences with involvement and varying levels of informed consent, which warrants ongoing research, particularly with indigenous research participants.