The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study.

BACKGROUND: Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. METHODS: Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. RESULTS: Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. CONCLUSION: This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.

How developmental coordination disorder affects daily life: The adolescent perspective.

BACKGROUND: Few studies have focused on the implications of developmental coordination disorder (DCD) in the teen years. Understanding the unique needs of adolescents with DCD and the challenges they face are imperative to inform clinical care. AIM: To understand how DCD affects daily life from adolescents living with the disorder. METHODS: Participants were recruited from a database of adolescents who were formally diagnosed with DCD in childhood. Nineteen semi-structured interviews of adolescents with DCD (13-18 years) were conducted and analyzed using an interpretive description approach. RESULTS: Data analysis revealed four overarching themes: (1) Through the years; (2) Standing out, left out, opting out; (3) Rising into Resilience; and (4) Help me to be me. Adolescents with DCD face challenges in physical, cognitive, social, emotional, and mental health domains, but their success can be optimized through provision of support, fostering social connections, the use of strategies, and increasing public understanding. Few services currently exist for adolescents with DCD, as treatment is not standard of care. CONCLUSIONS AND IMPLICATIONS: Insights gained from this study provide client-centred evidence to advocate for intervention for adolescents with DCD, and guide recommendations for clinical care and community support to meet the needs of this under-served population. WHAT THIS PAPER ADDS?: This paper qualitatively explores the lived experience of adolescents with DCD, adding to the limited research within this population. Expanding beyond the typical focus of motor challenges, this paper highlights the widespread influence of DCD on daily life, including in cognitive, mental health, and social-emotional domains. Common environmental contexts that exacerbate challenges during adolescent years are explored, including high school PE class and electives, learning to drive, beginning employment, and preparing for post-secondary education. Through an interpretive description methodology, this paper delves into clinical and practical solutions to support adolescents with DCD, from an individualized and client-centered perspective.