Falling Through the Cracks: Barriers to Accessing Services for Children with Complex Health Conditions and their Families in New Brunswick

Access to a wide range of services is essential for children with complex health conditions and their families to ensure family-centred care that promotes positive outcomes. Despite this, these families often experience difficulties accessing the services they require. This study examined the services available and the barriers to accessing these services in New Brunswick, Canada. We conducted an environmental scan of services and semi-structured interviews with nineteen families and sixty-seven stakeholders from the health, social, and education sectors. We identified a wide range of services available to children with complex health conditions and their families. Barriers to accessing services were identified and organized into three categories: (1) service availability, (2) organizational, and (3) financial. These findings will inform policy and practice to improve services for these families.L’accès à une vaste gamme de services est essentiel pour les enfants ayant conditions de santé complexes et leur famille afin d’assurer des soins axés sur les familles qui favorisent des résultats positifs. Toujours est-il que ces familles éprouvent souvent des difficultés à avoir accès aux services dont elles ont besoin. Dans le cadre de la présente étude, on a examiné les services offerts et les obstacles qui empêchent d’obtenir de tels services au Nouveau-Brunswick, au Canada. On a entrepris une analyse du milieu des services ainsi que des entretiens semi-structurés avec 10 familles et 67 intervenants des milieux de la santé, des services sociaux et de l’éducation. On a relevé une large gamme de services offerts aux enfants ayant conditions de santé complexes et leur famille. De plus, on a cerné les obstacles à l’accès des services et on les a répartis en trois catégories : les obstacles à la disponibilité des services, les obstacles organisationnels et les obstacles financiers. Ces conclusions façonneront les politiques et les pratiques afin d’améliorer les services pour de telles familles

A Mixed-Methods Research Protocol to Learn About Children With Complex Health Conditions and Their Families

Advances have been made to improve health care for children with complex health conditions (CCHCs); however, little is known of the needs of these children and their families in the Canadian context. In this article, we describe our Canadian Institutes of Health Research funded Quick Strike protocol, a mixed-methods multisite research project that explored CCHC and their families in two Canadian provinces. The aims were (a) to describe and define CCHC, (b) to understand the needs of CCHC and their families, (c) to identify gaps and barriers to services for this population, and (d) to adapt and test the application of a computerized algorithm to yield information on CCHC. The mixed-methods design was comprised of four components: three qualitative and one quantitative. We describe the components of this project and outline the methods and procedures of data collection and analysis for each component. One of the main sources of data was interviews from 121 stakeholders, which included CCHC and family members, as well as health, social, and education professionals. This Quick Strike project was designed to engage stakeholders and the public with integrated knowledge translation threaded as a core element throughout the research process. Multiple strategies were used to validate and disseminate early findings from the research. As we outline in this article, this research project provided the foundation for one innovative service model of care, NaviCare/SoinsNavi, and spawned a number of additional outcomes such as a secondary analysis of the data to describe interprofessional collaboration for CCHC