Family Navigation for Children with Special Health Care Needs: A Scoping Review

• In Event: From Coordination to Collaboration: Looking Across Healthcare and Educational Contexts to Support Children with Disabilities

Abstract

Objectives:
Children with special health care needs (CSHCN) make up about 20% of the population under 18 and report consistent unmet service needs and lack of care coordination. It is well-understood that CSHCNs’ unmet service need burden falls to families. As calls for family-professional partnerships increase, it is crucial to explore how “family navigation,” an emerging construct, is conceptualized within the existing literature on CSHCN and their families. This scoping review study identifies the characteristics of existing literature, maps the concept of family navigation, and synthesizes practice and research recommendations.
Methods:
A scoping review of peer-reviewed empirical literature on family navigation was conducted using the Joanna Briggs Institute (JBI) methodology for scoping reviews (Peters et al., 2020). Articles were identified by searching scholarly databases. Inclusion criteria included: a) empirical research papers published in peer-reviewed academic journals (2001-2022), b) United States-based, c) available in English, d) related to services and systems for CSHCN. The initial search yielded 2,677 de-duplicated articles that were screened by title and abstract by two reviewers. Following the screening process, 174 studies were included in the full-text review round, independently coded by two reviewers. Of these, 105 did not meet the criteria, resulting in 68 included articles. Frequencies were generated for the first aim and inductive thematic analysis was used to code extracted paper components (Clarke & and Braun, 2017; Elliott-Mainwaring, 2021).
Results:
Overall, compared to years 2001-2014, there was an increase in publishing frequency from 2015-2022. The papers focused on a range of relevant conditions, with the most popular being CSHCN in general (19, 27.9%), autism spectrum disorder (10, 14.7%), neurodevelopmental (not autism spectrum disorder) (10, 14.7%), medical complexity and chronic health conditions (9, 13.2%), genetic and congenital disorders (7, 10.3%), disabilities in general (7, 10.3%), hearing impairments (2, 2.9%), and four studies (5.9%) that could not be clearly classified. While most studies did not receive any funding (44, 64.7%), the largest funding source was federal agencies (15, 22.1%), followed by local sources (11.8%), state agencies (4, 5.9%), national foundations (3, 4.4%), and foreign funding sources (2, 2.9%).
Family navigation was defined in relation to “care coordination” and “building family strengths.” For care coordination-related definitions, elements included provider-caregiver communication, skilled guidance, financial/logistical support, and integrated care model. For building family strength-related definitions, elements included advocacy skills, family-centered resources, child-centered care, and family-provider partnerships. Future practice recommendations emphasized collaborative efforts, including increasing “team skill-building,” professional respect for family knowledge, and culturally responsive practices. Future research recommendations included investigating implementation of family navigation interventions, increased outcomes research, and methodological applications including CSHCN identification methods and social network analysis.
Scientific or scholarly significance:
Overall, the role of family navigation has grown in the last 25 years, which aligns with an overall trend towards patient-centered care. In finding that family navigation is linked to both care coordination and building family strength, it is vital that future practice and research center this linkage by focusing on relationship and partnership-building components, thereby enabling improved outcomes for CSHCN.

Authors

• Randall Owen, University of Nevada - Reno

• Lex Owen, University of Nevada - Reno

• Ruby Batz, University of Nevada - Reno