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Background: Approximately 70% of children diagnosed with a medulloblastoma will become long-term survivors. Medulloblastoma therapy frequently causes long-term morbidities in survivors, which places a considerable burden on parental caregivers.We aimed to explore the experience of parental caregivers caring for medulloblastoma survivors. Methods:We conducted a qualitative study using grounded theory thematic analysis.We used semi-structured parental caregiver interviews to explore family experiences, social circumstances, and family-reported impact within families of children who had survived medulloblastoma. Parental caregivers were recruited from specialized survivor clinics at two large quaternary centers in Toronto, Canada.Results: Sixteen of 22 eligible families participated, and 20 parental caregiver interviews were completed. Survivors were a median age of 6 years (range: 1-9 years) at diagnosis, and were 9.5 years (range: 5-12 years) from treatment at the time of the interview. Three major themes and associated subthemes emerged: (i) parental caregivers described significant long-term challenges associated with their child's survivorship. Subthemes included medical treatment sequelae, school issues and behavioral concerns, and surveillance and access to care. (ii) Parental caregivers recognized the impact that their child's quality of life (QOL) had on both their personal and family QOL. Subthemes included parental QOL, parental mental health and coping, spousal relationships, and effects on the family unit as a whole. (iii) Parental caregivers reported experiencing conflicting emotions related to their child's survivorship status and long-term effects. Subthemes included feeling happiness with concurrent worry, fear, and stress, as well as concerns about the future.Conclusions: Parental caregivers of medulloblastoma survivors experience long-term challenges, with personal and family impacts. Further work is needed to improve care models and support systems for families with a child who has survived medulloblastoma.

Introduction/Background Pain and irritability of unknown origin (PIUO) is reported to effect 73% of children with severe neurological impairments (SNI), and is a source of stress for children and families alike. Currently, there is no consensus among clinicians on how to manage PIUO and it is often difficult to determine the source of pain. Lacking an explanation for the source leaves clinicians unable to effectively treat the pain and increases a caregiver’s obstacles in providing care. Limited research exists on the effect of PIUO on children with SNI and their families. Objectives To explore and characterize the overall experience of PIUO for children with SNI and their families. Design/Methods Semi-structured interviews were conducted with parental caregivers of children with SNI who experience PIUO and are followed by the Complex Care Program at SickKids. Interview guide topics included pain expression and management, healthcare-team support and family coping. Interviews were conducted until saturation was reached. Interviews were audio-recorded, transcribed verbatim, coded and analyzed by two independent reviewers using an inductive six-step thematic analysis process on NVivo software. Results Fifteen caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed two major themes and associated subthemes (in parentheses): 1) Day-to-day life with PIUO (pain expression and frequency, management, and quality of life) and, 2) Areas for improvement (diagnostic process, resources and support, healthcare-team interactions). Characterizing the PIUO experience is an important area of research as findings can be used to guide clinical teams in providing holistic family-centered care to children with SNI. The findings support the need for clinical innovation by adjusting practice guidelines through the creation and implementation of an integrated clinical pathway to identify treatable causes of pain and irritability in children with SNI. Conclusion Diagnostic tests for PIUO are often inconclusive and stressful for patient-families. Limited pharmacological and non-pharmacological treatments exist for PIUO. Parental caregivers describe the experience as emotionally challenging and requested support for coping. Future research should focus on interventions for PIUO in children with SNI and reducing caregiver stress and burden.