Beyond physical access: a qualitative analysis into the barriers to policy implementation and service provision experienced by persons with disabilities living in a rural context.
BACKGROUND
Persons with disabilities make up approximately 15% of the world's population, with vulnerable communities disproportionately affected by the incidence of disability. Research reflects that persons with disabilities are vulnerable to stigma and discrimination, social isolation, and have physical barriers to accessing support services, all of which serve to perpetuate a sense of uncertainty and vulnerability within their lives. Recently a number of policies and models of intervention have been introduced intended to protect the rights of those affected by disability, yet limited research has been conducted into the lived experiences of persons with disabilities, particularly in rural contexts. This implies that little is known about the impact of the rural context on the lived experience of disability and the ways in which context impacts on the implementation of policies and practices.


METHODS
The current study employed a qualitative design underpinned by the principles of narrative inquiry and participant observation. Thirty adults with a variety of congenital and acquired disabilities (15 men and 15 women, ranging in age from 19 to 83 years) living in 12 rural communities in the Mpumalanga Province of South Africa were recruited through snowball sampling. Data collection comprised a combination of narrative inquiry and participant observation. Narratives were collected in SiSwati with the assistance of a SiSwati-speaking research mediator and were transcribed and translated into English. Data were analysed inductively according to the principles of thematic analysis.


RESULTS
Findings confirmed that the experience of living with a disability in a rural area is associated with discrimination, social exclusion, and isolation and barriers to accessing services, underpinned by numerous context-specific experiences, including mortality rates, exposure to numerous and repeated forms of violence across the lifespan, and corruption and lack of transparency in the implementation of government policies and practices. These experiences are not currently reflected in the literature or in guidelines on the implementations of policies and service provision, and thus have the potential to offer novel insights into the barriers faced by persons with disabilities living in rural areas.


CONCLUSIONS
The results of this study suggest that barriers to service provision extend beyond physical obstacles, and include a variety of sociocultural and sociopolitical barriers. By failing to take these into account, policies and current models of service provision are only able to provide limited support to persons with disabilities living in rural areas. The findings reveal narrative inquiry to be a powerful and culturally safe tool for exploring lived experience among vulnerable populations and hold significant implications for both practitioners and policy developers. Furthermore, it emerges that one-size-fits-all policies are unable to meet the needs of persons with disabilities living in rural areas. However, the implementation of site-specific needs analyses with the use of flexible and culturally appropriate tools has the potential to redress the discrepancies in policy implementation and can be used to strengthen institutional ties and referral pathways.
School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa. joanne.neille@wits.ac.za.
Joanne
J
Neille
School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa. claire.penn@wits.ac.za.
Claire
C
Penn
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003415:Crime / Q000523:psychology / Q000706:statistics & numerical data; D003467:Cultural Deprivation; D006233:Persons with Disabilities / Q000523:psychology* / Q000706:statistics & numerical data; D005260:Female; D033161:Government Regulation; D007722:Health Knowledge, Attitudes, Practice; D006284:Health Plan Implementation / Q000458:organization & administration / Q000592:standards*; D006297:Health Services Accessibility / Q000592:standards*; D054625:Healthcare Disparities / Q000592:standards; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012424:Rural Population / Q000706:statistics & numerical data*; D012648:Self Care; D013019:South Africa; D014754:Violence / Q000523:psychology / Q000706:statistics & numerical data; D055815:Young Adult
Africa; Community Participation; Cross-cultural Safety; Determinants of Health; Ethics; Health Service reform; Human Rights and Ethics; Sociology