{
  "abstract": "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 : - A lack of research in this area. The role of fathers – they are likely to be struggling emotionally but in different ways and this may get missed. Impact on relationships – there are additional burdens and tensons and a ‘medicalizing’ of parents. Changes in individuals – self-identity, career, day to day life. Making meaning and ‘ambiguous loss’ -adjusting expectations and exploring new/alternate possibilities. Redefinition of their relationship with the situation and explore parental perceptions about the illness. Themes At diagnosis/Kasai:Parental guilt.Anger of not being listened to pre BWCH. Adjusting to being in hospital, working with the team, being away from support network.Adjusting to being a parent of a child with a health condition.Grief and loss of hopes and expectations.In ‘survival’/‘threat’ mode.Post Kasai/after discharge:Living with uncertainty.Renegotiation of roles – as a partner, parent of an unwell child.Reorganisation of day to day and longer term.A need for self-care/external support.Struggle to acknowledge their own needs.Longer term: Continuing to live with and adjust to uncertainty. Preparing for transplant/undergoing a transplant/ Role – parent/carer/medic/organiser. Reorganisation of day-to-day and longer-term life. Sustaining themselves and each other. Balancing the urge to protect child with their growing independence. 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.References Zhang C-L, et al. Psychological journey and coping styles of parents of infants with biliary atresia. A single-center qualitative study. 2023. 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.",
  "authors": [
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Zoe Taylor"
    },
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Alice Morey"
    },
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Velma Wright"
    },
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Fatima Kalsoom"
    },
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Hannah Butler"
    },
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Caroline Godber"
    },
    {
      "affiliations": [
        "Birmingham Womens and Childrens Hospital, Steelhouse Lane, Birmingham B4 6NH"
      ],
      "name": "Girish Gupte"
    }
  ],
  "title": "OC52 Biliary atresia family focused pathway is essential in supporting families through the patient journey",
  "uid": "57b5a456-8395-5f5d-ad7b-26d93e0e3c07"
}