Disability and rurality: a systematic review of qualitative studies of experiences with disability among families with children and youth with disabilities

Abstract

Purpose: Children and youth with disabilities and their families living in rural areas often face additional challenges to accessing services and often experience more social isolation than children and youth in urban centers. However, we know relatively little about their lived experiences. The purpose of this review was to explore the experiences of children and youth with disabilities and their parents who live in rural areas.

Methods: We conducted a systematic review of qualitative studies. We searched six international databases Ovid Medline, Embase, Healthstar, CINAHL Plus, Scopus, and Web of Science.

Results: Fifty-five articles met our inclusion criteria involving 1219 participants, spanning across 21 countries over a 34-year period. Our findings involved the following themes: (1) challenges accessing health care, education and community services; (2) caregiving challenges; (3) stigma, discrimination and isolation; (4) coping and resilience strategies; and (5) intersectional factors affecting rural experiences.

Conclusions: Our results highlight how living in a rural area can exacerbate challenges for children and youth with disabilities. However, some benefits to rural life exist despite the difficulties that location presents. More rural health care providers and resources are needed to support children with disabilities.

Keywords: Children; disability; parents; qualitative; rural; youth.