Holland Bloorview Kids Rehabilitation Hospital

Clinicians can help address the discrimination that children and youth with disabilities often encounter. However, they commonly report lacking training and experience in addressing multiple forms of discrimination, such as ableism and racism. A lack of knowledge could lead to stigma and inequities within healthcare. This study explores clinicians' suggestions for addressing multiple forms of discrimination among children and youth with disabilities.

This qualitative study involved in-depth interviews with a purposive sample of 15 paediatric rehabilitation clinicians and community service providers working with disabled youth who have multiple minoritized identities. We applied an inductive thematic analysis to the interview transcripts.

Our findings highlighted the following four themes: (1) disability awareness and anti-ableism training and education; (2) enhancing inclusive programming, services and policies; (3) building connections to supports and resources; and (4) advocacy and incorporating lived experience perspectives.

The results underscore the need for clinicians to engage in more training and to facilitate access to resources for multiply minoritized youth with disabilities. Dedicated funding, resources and commitment at organizational, systems and policy levels are needed to address discrimination.

Interventions to support siblings of youth with disabilities and chronic conditions have shown promising outcomes, yet there is limited synthesized literature and guidelines to support their design and development. This scoping review aims to synthesize: (1) study, participant, and intervention characteristics of sibling-focused interventions; and (2) intervention outcomes.

Scoping review guidelines were aligned with Arksey and O'Malley, with considerations from Levac et al. and adhered to the PRISMA-ScR checklist. Four databases: (1) Ovid MEDLINE, (2) EMBASE, (3) CINAHL, and (4) PsycInfo were searched through November 2024. Data were extracted on study, participant, and intervention characteristics, and outcomes. The TIDieR checklist structured the reporting of intervention characteristics.

After screening the title and abstracts of 16,654 articles, 173 studies were eligible for full-text review, with 48 included. Most interventions were group-based and delivered in-person (n = 36; 75.0%) and only nine interventions (18.8%) utilized remote or virtual components. Interventions commonly included educational topics, activities, and social components. Intervention outcomes were focused on mental health, knowledge, self-esteem, social functioning and connectedness, family dynamics, and other.

This scoping review synthesizes sibling-focused interventions, highlighting key characteristics and outcomes. Findings can guide meaningful and inclusive, evidence-based rehabilitation practices addressing siblings' unique needs.

Rationale: Lung volume recruitment (LVR) is prescribed for children with Duchenne muscular dystrophy (DMD) to maintain chest wall compliance and assist airway clearance. Objective: We aimed to determine if twice-daily LVR compared with standard treatment in children with DMD improved health-related quality of life (HRQOL) over 2 years. Methods: A multicenter, assessor-blinded randomized controlled trial was conducted among boys aged 6-16 years with DMD with forced vital capacity >30% predicted to undergo conventional treatment or conventional treatment and manual LVR twice daily for 2 years. The outcome was HRQOL measured by two validated instruments (Pediatric Quality of Life Inventory [PedsQL] generic version 4.0 and PedsQL DMD version 3.0) every 6 months. Results: Sixty-two boys (33 in the LVR group and 29 controls) with a median (IQR) age of 11.4 (9.4-13.4) years completed the study. Median (IQR) baseline HRQOL scores assessed by parent/caregiver PedsQL were 58.0 (41.9-67.0) and 55.2 (47.8-63.5) for the LVR and control groups. HRQOL trajectories were stable during the 2-year study period except in terms of parent communication, which improved. No statistically significant interactions were detected between visit and treatment group for any PedsQL outcomes. DMD PedsQL communication scores in the LVR group showed more positive change compared with controls. Treatment scores in the LVR group showed less positive change over time compared with controls; however, after correcting for multiple testing, the changes were no longer significant. Respiratory symptom rate did not differ between groups and was not associated with any HRQOL outcome. Conclusions: There was no difference in HRQOL between the LVR and control groups after 2 years. The burden of LVR did not appear to adversely affect HRQOL.