G19 Improving out of hours paediatric services: the role of a clinical nurse coordinator at a tertiary children’s hospital

Abstract

Findings Obtaining a diagnosis was a difficult process characterised by delays, alternative diagnoses, uncertainty and conflict (inter-professional and parent-professional) that related to the condition's rare and newly recognised status. Families experienced an MS diagnosis as both a desirable and undesirable event in their lives. Disclosure of the diagnosis to others produced a range of responses including disbelief which could contribute to an ongoing sense of uncertainty. Life with childhood MS was a challenging and distressing experience for families because of its uncertain and variable nature. Parents and young people reported feelings of depression and isolation. Families lacked information about the condition and found it difficult accessing specialist expertise as well as peer support due to the condition's rarity. Different service models were evident across the UK with adult services playing a key role in supporting families and paediatric clinicians. Healthcare professionals faced challenges in organising services and therapies (including medications) to support families at home and in school. This was compounded by the variable and unpredictable needs of children/young people with MS. Families valued receiving support from a specialist nurse although this was not provided by many centres. Conclusions This study has illuminated young people's, parents' and professionals' experiences of childhood MS, how services are organised and the current gaps in support. These findings may have relevance to other rare childhood conditions. G18EVALUATION OF A PEER PARENTING SUPPORT SCHEME FOR PARENTS OF DISABLED CHILDREN Aim This presentation will discuss findings from a study which evaluated Scope's Face 2 Face peer parenting support scheme for parents of children with a disability or additional need within a regional children's hospital. Methods Data were collected before and after the period of befriending from the parents providing support (befrienders) and the parents receiving support (befriendees). This was a mixed methods study. Quantitative data were collected from the administration of four structured questionnaires (GHQ-12, Paediatric Inventory for Parents, Peds QL™ Family Impact Module, Contact with Health Professionals). Qualitative data were collected during semi-structured qualitative interviews. Results 26 befriendees (24 mothers and 2 fathers) and 13 befrienders participated in the research project. In total 72 sets of questionnaires were completed and 75 interviews were conducted. The parents in this study (befriendees and befrienders) demonstrated high levels of psychological distress (GHQ-12 scores) before befriending compared to other published parent literature. The befriendees and befrienders reported positive experiences of the scheme and this was reflected in their improved questionnaire scores for psychological wellbeing, family functioning and health related quality of life. Despite improved scores the parents continued to demonstrate poor psychological and emotional wellbeing. After t...