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"Shaw, Mae"
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Lived experiences of patients with epidermolysis bullosa: A rare genetic skin disease
Background: Epidermolysis bullosa (EB) is a rare genodermatosis that results in extreme skin fragility, for which there is no cure and may be fatal. The quality of life of patients affected may be greatly impacted.Aim: This study aims to understand the lived experiences of patients with EB.Setting: Intensive semi-structured interviews were conducted with three participants via Zoom, and a follow-up member checking session was held in person at the RARE-X conference.Methods: This qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of patients with EB. Semi-structured interviews were conducted with three participants using Lincoln and Guba’s framework of trustworthiness was used to ensure rigour.Results: Three adult participants shared in-depth experiences of living with EB. Four themes with subthemes were identified: (1) medical damages, (2) development trajectory, (3) subjective well-being and life satisfaction and (4) sources of resilience and support.Conclusion: Epidermolysis bullosa affected all developmental stages of life, impacting them physically, emotionally, socially and financially. They shared their concerns relating to a lack of knowledge of healthcare practitioners (HCPs) in managing their illness and society for judging their condition. There is a need for comprehensive biopsychosocial care of patients and their families, as well as continued medical education for HCPs and awareness of society regarding this debilitating condition.Contribution: To our knowledge, this is the first study in Africa focused on the lived experiences of patients with EB. This highlights the physical, psychosocial and financial challenges that patients with rare diseases encounter in our local setting.
Journal Article
Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2
BackgroundEpidermolysis bullosa (EB) is a rare, incurable inherited mucocutaneous blistering disorder that can lead to multisystemic complications. In Africa, there are no established consensus statements or clinical guidelines for the care of patients with EB.AimTo develop comprehensive transdisciplinary consensus statements for the care of patients with EB. This article (Part 2) presents 24 consensus statements focused on the biopsychosocial aspects of EB care. Part 1 addressed diagnostic and clinical management and resulted in 16 consensus statements.SettingThis was a multicentre, multiprovincial study involving healthcare practitioners from Eastern Cape, Free State, Gauteng, KwaZulu-Natal and Western Cape.MethodsIn collaboration with patients and families, the transdisciplinary team of experts developed consensus-based statements through a modified Delphi process. This iterative process involved three consensus rounds with an 80% agreement threshold for each action point to ensure validity and reliability.ResultsIn total, 24 consensus statements were endorsed. These included holistic patient and family care; cultural considerations; educational inclusion; paediatric and emergency care; psychosocial care; nutritional; gynaecological and ophthalmic support; occupational therapy; physiotherapy and orthopaedic; dental and podiatric management.ConclusionComprehensive transdisciplinary care is essential for addressing the holistic needs of patients with EB and their families, particularly in resource-limited and culturally diverse settings.ContributionThis is the first set of consensus statements for the care of EB in South Africa and the broader African continent, offering a culturally sensitive, patient-centred framework for multidisciplinary care.
Journal Article
Community development and the politics of community
In a context in which ‘community empowerment’ is virtually government policy, it is hardly surprising that there is almost no area of social policy that is immune from the community treatment. Of course, this is not new, despite the zeal with which each new initiative is ‘rolled out’. In fact, sometimes it seems that policy development needs to reinvent the wheel of community every decade or so. The question, therefore, is what this ideological recycling of community tells us: first, about the meaning of the term itself; second, about its contemporary significance within the wider politics of the state. This article argues that we need to draw on those historical and theoretical resources which help us to think our way through to the contemporary context. Only an active and engaged recognition of the politics of community will enable us to get to the root of the problematic yet promising nature of community development.
Journal Article
Stuck in the middle? Community development, community engagement and the dangerous business of learning for democracy
Historically, community development has been centrally concerned with democracy: in many contexts, its professional legitimacy has been justified by its strategic position as mediator in the relationship between the state and its citizens, through various forms of participation and community engagement Whilst community development offers opportunities for extending and deepening democracy, such activity is always framed and regulated by the changing imperatives of policy. This has inevitably produced contradictions and tensions which, in turn, have framed the possibilities and constraints for practice. Negotiating these has always been a core challenge for practitioners. This article argues that contemporary community development, as both the agent and subject of modernization processes, has become seriously undermined in meeting this challenge. There is a danger that this leaves community workers stuck in the middle, as distinct from strategically positioned, between marketized state policy and democratic politics. The challenge for community development is how people can learn to be engaged – and, where necessary, to dissent – as actors in democratic politics in a context in which they are positioned as passive consumers, problematic objects of policy or resources for the diminishing welfare state. This will involve exposing the ways in which democracy is framed in policy and re-creating forms of purposeful practice that can act as a filter for sifting and sorting those values and practices which are in danger of erasing the democratic potential of community development.
Journal Article