Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration.

INTRODUCTION: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. METHODS: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps. FINDINGS: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. CONCLUSION: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. PATIENT OR PUBLIC CONTRIBUTION: The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.

Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.

OBJECTIVES: Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings. DESIGN: Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province. PARTICIPANTS: Thirty-two families (including 38 parents and 13 siblings) of CYSHCN. RESULTS: We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges. CONCLUSIONS: Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.

Factors shaping Aboriginal nursing students' experiences.

Motivated by a shortage of Aboriginal nurses and recurring difficulties in recruitment and retention of Aboriginal peoples in nursing education, a critical ethnography was conducted to examine the experiences of undergraduate Aboriginal nursing students in two Canadian schools of nursing. We conducted audiotaped interviews with Aboriginal nursing students (n=31), Aboriginal nurses (n=5), nursing faculty members (n=24), and individuals who were identified as knowledgeable about the context that might shape the experiences (n=16). Other data sources included reflexive and descriptive fieldnotes from 200 h of fieldwork in classroom and laboratory practice sessions and 135 texts from the participating schools. Nursing textbooks, course syllabi, policies, procedures, clinical evaluation forms and websites were randomly selected and analyzed to explicate how texts shaped the students' experiences. In this paper, we discuss the findings of the study and briefly share our recommendations.

Factors shaping Aboriginal nursing students' experiences.

Motivated by a shortage of Aboriginal nurses and recurring difficulties in recruitment and retention of Aboriginal peoples in nursing education, a critical ethnography was conducted to examine the experiences of undergraduate Aboriginal nursing students in two Canadian schools of nursing. We conducted audiotaped interviews with Aboriginal nursing students (n=31), Aboriginal nurses (n=5), nursing faculty members (n=24), and individuals who were identified as knowledgeable about the context that might shape the experiences (n=16). Other data sources included reflexive and descriptive fieldnotes from 200h of fieldwork in classroom and laboratory practice sessions and 135 texts from the participating schools. Nursing textbooks, course syllabi, policies, procedures, clinical evaluation forms and websites were randomly selected and analyzed to explicate how texts shaped the students' experiences. In this paper, we discuss the findings of the study and briefly share our recommendations.