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

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. We conducted a systematic review of qualitative studies. We searched six international databases Ovid Medline, Embase, Healthstar, CINAHL Plus, Scopus, and Web of Science. 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. 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. Children with disabilities and their families who live in rural areas face many challenges in accessing health care, education and community services.More efforts are needed to recruit and retain skilled health and rehabilitation personnel in rural areas.Clinicians and service providers should recognize how disability and rurality intersect with other factors such as socio-economic status, race/ethnicity and gender to influence experiences. Children with disabilities and their families who live in rural areas face many challenges in accessing health care, education and community services. More efforts are needed to recruit and retain skilled health and rehabilitation personnel in rural areas. Clinicians and service providers should recognize how disability and rurality intersect with other factors such as socio-economic status, race/ethnicity and gender to influence experiences.

生活在农村地区的残疾儿童青少年及其家庭在获取服务时常面临额外挑战，且相较于城市同龄群体，更易遭遇社交孤立。然而目前学界对其真实生活体验的认知仍相对匮乏。本综述旨在探究农村地区残疾儿童青少年及其父母的生活经历。我们对质性研究开展了系统综述，检索了Ovid Medline、Embase、Healthstar、CINAHL Plus、Scopus及Web of Science共6个国际数据库。最终共有55篇符合纳入标准的文献被纳入研究，涉及1219名参与者，研究覆盖21个国家，时间跨度达34年。本研究的发现包含以下五大主题：(1) 医疗保健、教育与社区服务获取障碍；(2) 照护挑战；(3) 污名化、歧视与社交孤立；(4) 应对策略与韧性构建；(5) 影响农村生活体验的交叉性因素。研究结果揭示了农村生活如何加剧残疾儿童青少年所面临的困境，但即便身处这类不利环境，农村生活仍存在部分积极面向。当前亟需为残疾儿童提供更多农村医疗保健服务与资源。农村地区残疾儿童及其家庭在获取医疗保健、教育与社区服务方面面临诸多挑战，需投入更多资源以招募并留住高素质的医疗与康复人才。临床医师与服务提供者应认识到，残疾与农村身份如何与社会经济地位、种族/民族及性别等其他因素相互交织，进而影响个体的生活体验。农村地区残疾儿童及其家庭在获取医疗保健、教育与社区服务方面面临诸多挑战，需投入更多资源以招募并留住高素质的医疗与康复人才。临床医师与服务提供者应认识到，残疾与农村身份如何与社会经济地位、种族/民族及性别等其他因素相互交织，进而影响个体的生活体验。