Background: Those affected by adrenal insufficiency (AI) (including congenital adrenal hyperplasia (CAH)) are at risk of serious illness and growth problems, and as a result they require life-long daily hormone replacement therapy. Little is known about the psychosocial impact that living with and treating AI on a daily basis can have on both children and their parents.
Objective and hypotheses: The aim of the study was to explore the psychosocial impact of AI from the perspective of parents, across three European countries. The study was conducted by Genetic Alliance UK as part of the European Commission funded Treatment of Adrenal Insufficiency in Neonates (TAIN) Project.
Method: The study used mixed methods. In 2014, 17 semi-structured interviews with parents in the UK were conducted and analysed thematically using Computer Assisted Qualitative Data Analysis Software, NVivo 8. In 2015, an online survey was developed, piloted and disseminated (predominantly through support groups) to parents of children under the age of 6 in the UK, the Netherlands and Germany. Fifty-four responses were received and the data has been analysed with the support of SPSS.
Results: The interviews and survey gathered parents views in relation to a number of key themes including the diagnosis period; the impact of the condition on children and parents; support and awareness; treatment and use of healthcare resources. The findings flagged up a number of challenges associated with both the rarity of the condition and the treatment regime. The perceived psychosocial impact on young patients was low, although parents reported several concerns regarding their childrens future.
Conclusion: The study has provided a rare insight into the wider impact of living with and managing AI and CAH, particularly from the perspective of parents. It has important implications for future research, and how families are cared for and supported in the future.
10 - 12 Sep 2016
European Society for Paediatric Endocrinology