The patient journey of adolescents with a functional disorder and their mothers
David Sullivan1, Lynn Jensen 2, Kim Laird2, Amy McCormack21Fiona Stanley Fremantle Hospital Group, Perth, WA, Australia2Perth Children’s Hospital, Perth, WA, Australia
Abstract
Background: The management of adolescents with a functional disorder is complex, with few reports of the journey from diagnosis to discharge. The aim of this study was to capture the lived experience of adolescents with a functional disorder and their parents, including their use of medical, psychological and allied health services at a tertiary paediatric hospital.
Methods: Adolescents and their parents were recruited from a clinical database at the hospital. Adolescents were included if they had received multidisciplinary care in the previous 24 months and had been discharged from the paediatric service. Semi-structured interviews were conducted via telehealth and audio-recorded. Recordings were electronically transcribed into written format, manually checked for accuracy, and sent to the participants for checking. When transcripts were returned they were de-identified and analysed using a pre-designed framework.
Results: Twelve interviews were conducted – 2 adolescents alone, 5 mother-adolescent dyads and 5 mothers alone. Adolescents stated a range of symptoms. Adolescents and their mothers described their journey to diagnosis as protracted, with feelings of frustration and dismissal. Adolescents received treatment in a multidisciplinary approach (no supportive care for family members) with mixed results. Adolescents and their mothers were hopeful for the future but also expected to have ongoing symptoms. Transitioning to community or adult services was viewed with trepidation by the adolescent and their mothers. Stress was pervasive.
Discussion: Adolescents with functional disorders and their families are an heterogenous group, emphasising the need for individualised management (including discharge planning) for the adolescent as well as their families.
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