{
  "abstract": "Our nutrition support team (NST) ran an inaugural Home Parenteral Nutrition (HPN) Family Day in October 2024, for children and young people receiving HPN and their families, including siblings. Parallel sessions included organised entertainment (disco party, balloon modelling, magic show) for the children and young people, running alongside educational events for parents and caregivers. There were presentations from the clinical psychologist, clinical nurse specialists, along with input from patients and carer representatives to share their experiences. The event concluded with a panel discussion and networking event alongside a teddy making workshop.We were keen for feedback from both the families and the healthcare professionals involved. To achieve this we devised a questionnaire. Participation was voluntary and the information collected was anonymous. Questions were a combination of binary questions and free text opportunities.There are 14 children and young people under the care of the NST on HPN. 10/14 families attended the Family Day. 9 parents & 1 young person competed the family questionnaire.100% of families reported the day was ‘extremely useful’ and 100% reported that the level of information was ‘just right.’ The feedback for the panel discussion: 70% of respondents reported that it was ‘extremely useful,’ and 30% indicated it was ‘somewhat useful.’ 80% of respondents indicated they ‘very much enjoyed’ the children’s activities. 90% of respondents indicated it was ‘extremely useful’ to meet other families of children on HPN. We asked families what they liked about the day. Comments included ‘meeting others in the same situation,’ ‘feeling validated for all the feelings we have, dealing with a chronic illness and home PN,’ ‘hearing about tips and tricks.’ ‘What the gastro team wants the future to look like for their patients.’ We asked families what we could improve for any future family days and comments included ‘next time parents and older children could have input into the agenda,’ ‘maybe an ice breaker for parents to introduce themselves.’ The last question asked families what issues matter most to them.57% of families answered the lack of a specialist home HPN nurse was an key issue for them. Other feedback included, advice for swimming with central lines and families were keen for future events including informal and recreational events, suggesting various activities they would enjoy.The family feedback reflects the fun, positive atmosphere of the day and how meaningful it was to families to meet each other and share experiences. We have presented the feedback at our multidisciplinary team meeting and look forward to sharing it with the hospital mangers. highlighting the issues that matter to the families, including the need for a dedicated HPN nurse. This inaugural event was a success and we are keen to plan similar events in the future, co-producing these with parents and young people themselves. Through these activities we build community and can better advocate for the families that use our service.",
  "authors": [
    {
      "affiliations": [
        "Royal Belfast Hospital for Sick Children"
      ],
      "name": "Anne-Marie McClean"
    },
    {
      "affiliations": [
        "Royal Belfast Hospital for Sick Children"
      ],
      "name": "Janine Dolan"
    },
    {
      "affiliations": [
        "Royal Belfast Hospital for Sick Children"
      ],
      "name": "Sarah Pedlow"
    },
    {
      "affiliations": [
        "Royal Belfast Hospital for Sick Children"
      ],
      "name": "Louise McLoughlin"
    }
  ],
  "title": "OC46 First steps: learning from an inaugural parenteral nutrition (PN) family day",
  "uid": "3ed994a7-063a-53df-bef5-fdc92d085068"
}