Aims Increasing numbers of children and young people are being diagnosed with multiple sclerosis (MS). However, there is a lack of research about young peoples’ and parents’ experiences of living with MS and it is unknown how appropriate current support is for families. This presentation will report the findings from the first UK study that has explored the experiences and needs of parents and young people and examined the adequacy and appropriateness of services and support for this group of families.
Methods A qualitative approach (grounded theory) was taken. Semi-structured, in-depth interviews were conducted with 21 children/young people, 31 parents and 20 health-care professionals. The sample was recruited via health service and voluntary sector organisations across the UK. Data were analysed using the constant comparison approach.
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.
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