Lived experiences of pain in children and young people with cerebral palsy.

AIM: To explore the lived experiences of pain in children and young people with cerebral palsy (CP). METHOD: Participants were recruited from the Sydney Children's Hospitals Network and the New South Wales/Australian Capital Territory CP Registers. Inclusion criteria were as follows: CP; aged 9 to 17 years; current/past experience of pain; fluent in English; no greater than mild intellectual disability. Purposive sampling ensured representation across age, motor subtypes, and Gross Motor Function Classification System (GMFCS) levels. Semi-structured face-to-face interviews were conducted. Data were analysed following an interpretative phenomenological approach. RESULTS: Ten participants (three male) were included (mean age 14y 5mo, SD 2y), GMFCS levels I (n=4), II (n=3), III (n=2), and IV (n=1). Analysis led to three superordinate themes: (1) Everybody's experience of pain is different; (2) When the pain is winning; (3) 'I know how to deal with it'. Pain contributors and locations varied between children. Pain intruded on school, physical activity, and psychosocial functioning. Children described personalized strategies used to deal with pain. INTERPRETATION: In this study, children self-reported highly individualized pain experiences which interfered with their daily life and psychosocial well-being. There is a need for improvement in pain assessment and a personalized approach to pain management.

Fitting back in: adolescents returning to school after severe acquired brain injury.

PURPOSE: To explore the experiences of Australian adolescents with severe acquired brain injury (ABI) and their families as the adolescent returned to school. In particular, to understand the influence of services and support on the school return. METHOD: In-depth interviews conducted over a two-year period with families who had an adolescent with a recent severe ABI (mean age 15 years, 11 months) analysed using a grounded theory approach. RESULTS: Two critical phases for adolescents returning to school post ABI were identified: organizing the school return and being back at school. Experience in these phases was influenced by length of school absence, extent of noticeable and hidden problems and school response to the students' return post injury. The central concept characterizing experience was the challenge of fitting back in. Some adolescents fitted back in adequately and continued school participation. Those that did not fit in tried again by revisiting the organizing phase, re-evaluated their school experience and either continued or left school. CONCLUSIONS: Adolescents with ABI faced the challenge of fitting back in when they returned to school. This was either facilitated or hindered by the extent and quality of organization, communication and support from parents, schoolteachers and the rehabilitation team.