Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non-conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple interventions may be effective in reducing burdens of care experienced by families of children with medical complexity.
Service providers working across different inclusive settings can use findings from this study to contribute to program design and implementation. Presented strategies enable children to experience opportunities for spontaneous free play, individualized structured support, and meaningful social participation. Overall, service providers are encouraged to enhance supportive child and service provider relationships and reciprocal child and environment relationships in group-based programs. Implications for Rehabilitation Exploring and facilitating reciprocal relationships between children and their environment is essential to creating inclusive leisure spaces. Transforming program intentions of meaningful social participation into practice requires learning about and affecting change in children's individual social contexts. Service providers can engage themselves as full participants in inclusive leisure spaces through playful negotiations, internal reflections, and artistic expressions.
Objective To explore how young adults with chronic pain define a successful transition from pediatric to adult chronic pain care, and how they would like to be empowered to achieve a successful transition. Design A descriptive qualitative design. Setting Participants were recruited from a hospital-based chronic pain clinic in Toronto, Canada and through social media. Subjects Young adults (ages 18–25 years old, inclusive) who received chronic pain care in a pediatric setting and continued to self-identify as having a need for chronic pain care in an adult chronic pain care setting. Methods Semi-structured interviews were used to understand the perspectives of young adults with chronic pain. Interviews were audio-recorded, transcribed verbatim, and checked for accuracy. Qualitative inductive content analysis was used to analyze the interview data. Results Eight young adults with chronic pain were interviewed (all women; median age =19 years). Five themes that addressed the study objectives are described: (1) young adults value skill-building and knowledge about the transition, (2) establishment of a strong therapeutic alliance with healthcare providers, (3) coordinated and planned transition, (4) social and environmental support, and (5) respect for young adults’ independence and autonomy. Conclusion Findings suggest the need for a collaborative and individualized approach for the successful transition of young adults across the continuum of chronic pain care which addresses their unique needs. To promote successful transition, clinicians should build relationships with young adults that facilitate choice and autonomy while enhancing skill-building and education on available resources.
Background Impairments in sleep health are associated with the development or worsening of chronic pain. Further, chronic pain can cause sleep health disruption by impacting sleep onset, sleep maintenance, sleep quality, and causing daytime somnolence. However, the association between chronic pain and sleep disturbances in the young adult population is unclear. Aim We describe our initial experience in establishing and running a clinic for managing sleep health and chronic pain in young adults. We also describe the prevalence and the pattern of sleep disruption as well as its relationship with self-efficacy in pain management, depression, and quality of life in this cohort. Methods After approval from the Institutional Review Ethics board, chart review and data extraction were conducted for patients who presented at the Young Adult Clinic (YAC) at Women’s College Hospital from March 1, 2018 to April 30, 2019. Results Medical charts of 55 patients were reviewed with the majority being females (71%). Chronic widespread pain was the most common pain syndrome diagnosed in our patients. Insomnia was the most common sleep-health related diagnosis in our patients. Patients with disorders of sleep were more likely to report lower self-efficacy for managing pain as compared to those with no sleep disorders (p = 0.023) but there was no significant difference between these two groups as regards risk for pain-related catastrophizing. Conclusion Impairments in sleep health may be an important modifiable risk factor for alleviating pain in young adults with chronic pain. Sleep disorders should be evaluated and addressed in this population.
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