Abstract
Background: There is a lack of integrated medical, educational, and social care for children with medical complexity and disorders that impact the brain and neurological system, otherwise known as neurodevelopmental disorders (NDD-MC). Caregivers must fill in the gaps for fragmented systems of care across systems and sectors and are impacted with unmet care needs and lack of integrated support. There is limited understanding of the needs and impacts of caregivers who coordinate and navigate care for their children across these fragmented systems and sectors. A greater understanding of families' unmet care needs could inform a shared vision and values for more effective models of care.
Approach: This sequential, mixed methods, exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure quality of life, care integration, and resource use. Respondents cared for children living with a diverse range of neurodevelopmental disorders. An adapted model using Maslow hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life and wellbeing. A family research partner with a child with NDD-MC was a research partner on the research team and was involved in determining the research question, co-designing the study and proposal, designing the interview guide, participating in data collection, analysis and dissemination. An advisory council of clinicians, care coordinators, and managers were also consulted throughout the study for input and feedback.
Results: Our study findings provide an increased understanding of the experiences and challenges of families in accessing services in various settings, considered varying levels of medical complexity, and different family socioeconomic backgrounds. This study provides a caregiver-centered narrative to describe the negative impacts of the absence of integrated care and needs-based models of care on family quality of life, care integration and resource use. Caregivers coordinated care in fragmented health and community systems with limited support and lack of family centred models of care to address medical complexity and coordination challenges. Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Study findings also indicate a positive correlation between family quality of life and support from the care coordinators, demonstrating that children living with NDD-MC may benefit from care coordination interventions.
Implications: A needs-based care coordination program is recommended to consider the health, educational, and social needs of children and their families living with a brain-based neurodevelopmental disability. Models of care should focus on unmet care needs rather than diagnosis only, and support should be tailored for the unique needs of the child and family to enhance quality of life and wellbeing. The positive correlation between support from integrated care teams and the quality of life of families with children with NDD-MC is critical in the context of research challenges in demonstrating the positive impact of care coordination interventions. Our findings inform planning for successful care coordination interventions. Future outputs include policy briefs to inform the delivery of patient-centered policy for families with children living with NDD-MC. Reports will also be developed for study participants to ensure transparency of the findings and acknowledge their contributions to this study.