Nurturing Leaders in Community-Based, Primary Healthcare Services for People with Disabilities in Low- and Middle-Income Countries.

Abstract

The health and social care needs of children and adults with disabilities are often neglected in many low- and middle-income countries. International opinion favours the creation of community-based supports rather than the institutional and clinic-based care that has dominated to date. However, models of care that are reliant on community leadership have been slow to develop within and across less affluent countries. Moreover, the managerial models inherent in institutional-based care are likely to be inadequate in such settings. This descriptive study aimed to explore the leadership qualities required in initiating and sustaining community-based supports. Face-to-face interviews were conducted with a purposeful sample of 16 leaders of projects in Africa, Asia, and South America. They included people with sensorial, physical, and intellectual disabilities as well as non-disabled leaders of local and national projects plus others whose leadership was at a regional or international level. Two main questions were addressed: what are the qualities required to function as a community leader and how can these qualities be nurtured in low resourced settings? The insights gained would inform the preparation and training of community leaders. Thematic content analysis identified three core themes: first, personal qualities such as empathy with an understanding of the personal circumstances of persons in need of support; second, communicating clearly the vision and values informing their work; and thirdly, building and mobilising community support from families and neighbours. The nurturing of leadership comes through mentoring and coaching, the empowerment of others, networking opportunities, and the development of inter-personal and communication skills. These themes were commonly expressed across the 16 leaders from all the participating nations and at all levels of responsibility, which suggests a universality of approach in relation to people with disabilities. The findings are in marked contrast to current practices in health and social care that have valued professional expertise over lived experience, knowledge, and technical skills over compassion and empathy, and the provision of person-centred "treatments" over developing community and personal self-reliance. Nonetheless, the challenges involved in establishing and sustaining new styles of leadership are many and will not be quickly resolved.