Alice Morey

The substance of Blue's content is actually almost irrelevant; it is our shock, our pain that is the ultimate fetish.

Evidence from literature suggests a huge psycho-social impact (emotional, financial, relationships, work, leisure) on parents and families of having a child with a health condition, with family response influencing both the course of illness and family’s health and happiness. There can be positive aspects such as family relationships becoming stronger and post traumatic growth.A decision was made to offer a family centered approach (systemic psychotherapy) specifically to all newly diagnosed BA families with focus on parental wellbeing, coping, impact on relationships and strategies to help them moving forward.The pathway began at the end of 2022/beginning of 2023 and has run until October 2024. There were patients not offered this intervention for agreed reasons (e.g. already engaged in HiM input, palliative involvement) and there were a small number who were unintentionally missed. During this time 25 families were offered input, and 21 accepted support. Of this, 18 were met F2F at diagnosis and 3 were not met at diagnosis but followed up shortly after.Of the 21, ongoing support (defined as more than just meeting at diagnosis) was participated in by Mum only (7) and both parents (10). Families were seen as inpatients and outpatients and sessions completed virtually and F2F, this was agreed collaboratively with parents and flexible to their changing needs.The common findings with specific themes around patient journey are as follows : -Themes At diagnosis/Kasai:Post Kasai/after discharge:Longer term:There is potential for preventative work with parents, resilience development and creation of resources to support parents with containment early in their journey, but also to sustain in long term with family therapy group pathway.References1. Zhang C-L, et al . Psychological journey and coping styles of parents of infants with biliary atresia. A single-center qualitative study. 2023.2. Rodijk LH, de Kleine RH, Verkade HJ, Alizadeh BZ, Witvliet MJ, Hulscher JB, Bruggink JL. Parental wellbeing after diagnosing a child with biliary atresia: a prospective cohort study. Journal of Pediatric Surgery 2022; 57 (4):649–654.