Abstract

Stigma is a widely recognised public health issue. Many people with neurological disease and their families experience stigmatisation, adding to their burden of illness. Rural populations are typically small, lack anonymity, and often have a higher proportion of older adults with inadequate access to specialised services and resources. Although generally isolated, rural areas can offer benefits such as a sense of familiarity and interconnectedness. The purpose of this scoping review was to map the existing evidence on stigma associated with non‐communicable neurological disease in rural adult populations and identify key findings and gaps in the literature. Our literature search of peer‐reviewed English language articles published from 1 January 1992 to 22 June 2017 was conducted across five databases yielding 8,209 results. After duplicate removal, pairs of reviewers independently screened 6,436 studies according to inclusion criteria developed a priori; 36 articles were identified for inclusion in this review. Study characteristics were described and illustrated by frequency distribution, findings were grouped thematically, and each of the five types of stigma were identified (social, self, health professional, associative, structural). Four factors influencing stigma (knowledge, familiarity, beliefs, and rurality) and four overarching stigma‐related themes (concealment; exclusion; disempowerment, discrimination, and unequal opportunities; and issues related to healthcare systems and providers) emerged. In urban‐rural comparison studies, rural residents were generally less knowledgeable about the neurological disease and more stigmatised. The impact of other factors (i.e., gender, age, and education) on stigma varied and are stated where associations were reported. Three main gaps were identified including: low attention to stigma related to neurological diseases other than epilepsy, limited cross‐cultural comparisons of stigma related to neurological disease, and inclusion of gender as a variable in the analysis of stigma‐related outcomes in only half of the reviewed studies. Further research is recommended.

Highlights

  • The negative physical and psychological effects of health‐related stigma that contribute to the burden of illness are well known (Hatzenbuehler, Phelan, & Link, 2013; Scambler, 2009; Weiss, 2006; World Health Organization, 2006)

  • What are the main aspects/issues of stigma associated with noncommunicable neurological disease in rural adult populations, : a What types of stigma exist? b What are the main factors associated with stigma and what is their effect on stigma? cWhat are the main themes related to stigma?

  • This scoping review identified 36 peer‐reviewed studies that reported on the stigma associated with neurological disease in rural adult populations

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Summary

Introduction

The negative physical and psychological effects of health‐related stigma that contribute to the burden of illness are well known (Hatzenbuehler, Phelan, & Link, 2013; Scambler, 2009; Weiss, 2006; World Health Organization, 2006). Definitions, types, and degrees of stigma exist and appear to stem from both the situational and multidisciplinary application of the term, in addition to its being comprised of multiple interrelated components (Link & Phelan, 2001). From 1990 to 2015, the global burden (premature mortality and morbidity) of communicable neurological disease has decreased, whereas the global burden of noncommunicable neurological disease has continued to rise (GBD, 2017). This is in line with other global communicable ‐ noncommunicable disease trends in general (GBD, 2016) and has been largely attributed to an ageing population and population growth in general (GBD, 2016)

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