Corrigendum: The impact, perceptions and needs of parents of children with epidermolysis bullosa.

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The impact, perceptions and needs of parents of children with epidermolysis bullosa.

BACKGROUND:  Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family. There is currently no published research on the lived experience of parents caring for a child with EB in a resource-limited environment in Africa. METHOD:  This qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of parents caring for children with EB. Semi-structured interviews were conducted with 13 participants between May 2022 and October 2023. Guba's framework of trustworthiness was used to ensure rigour. RESULTS:  Seven experiential themes with associated sub-themes were identified. The themes were (1) grappling with understanding EB, (2) the psychological experience, (3) living with the responsibility, (4) barriers to feeling supported, (5) changing relational dynamics, (6) experience of healthcare professionals and (7) parental needs. CONCLUSION:  Parents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents' needs and concerns will go a long way in decreasing this burden. A biopsychosocial approach with an awareness of cultural context is essential for family-centred holistic EB care.Contribution: This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.

'It breaks my heart': Healthcare practitioners' caring for families with epidermolysis bullosa.

Background: Epidermolysis bullosa (EB) is a painful genodermatosis presenting with skin fragility and blisters. There is no cure; the prognosis is guarded and depends on the subtype of the disease. Managing these patients can be emotionally challenging for healthcare practitioners. Aim: To determine the perceptions, impact, and needs of healthcare practitioners (HCP) caring for patients and their families with EB. Setting: Nelson Mandela School of Medicine, Durban and Grey's Hospital, Pietermaritzburg, KwaZulu-Natal. Methods: The study was guided by interpretative phenomenological analysis. Individual in-depth interviews were conducted with 10 healthcare practitioners. Guba's trustworthiness framework was used to ensure rigour. Results: Six global themes were identified, each related primarily to the perceptions, impact, and needs of healthcare practitioners. The experiences and perceptions of healthcare practitioners were that caring for patients with an incurable disease such as EB could negatively impact healthcare practitioners. There were divergent views among the disciplines of HCPs regarding the extent of care in a resource-limited environment. This resulted in negative emotions, ethical concerns, and a need for continued medical education and the application of coping strategies. Healthcare practitioners observed that patients and their families were vulnerable, requiring comprehensive biopsychosocial care. Conclusion: Healthcare practitioners should be aware of their emotional challenges, seek support where necessary, and use effective coping strategies and self-care. Contribution: The concerns and needs of healthcare practitioners are highlighted and interventional strategies to assist healthcare practitioners are suggested which will ultimately improve patient care.

A qualitative study on traditional healers' perceptions and management of epidermolysis bullosa.

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis causing blisters that can result in multisystemic complications and death. Limited data exists on EB in South Africa. Research indicates that the majority of African patients consult traditional health practitioners (THPs) before seeking allopathic healthcare. Aim: This study aims to understand THPs belief systems, experiences, perceptions and management of EB patients and their families in the social and cultural context to improve the healthcare of EB patients. Setting: The study setting is Nelson Mandela School of Medicine, Durban, and Grey's hospital, Pietermaritzburg, KwaZulu-Natal. Methods: Qualitative in-depth interviews were conducted with 10 THPs. A non-probability, purposive sampling method was used. A two-site qualitative study was guided by interpretative phenomenological analysis. Guba's trustworthiness framework was used to ensure rigour. Results: Three male and seven female THPs were interviewed, including sangoma, inyanga and umthandazi. The integration presented five global themes: (1) THP practices, (2) perceptions of THP, (3) experiences of THP with patients with EB, (4) diagnosis and management plans of THP and (5) vision and role of THPs. There were multiple divergent perspectives among the THPs with the shared African worldview. Conclusion: Understanding THPs belief systems and therapeutic options is crucial for holistic patient management. Knowledge exchange can promote safe healthcare practices and facilitate collaboration between traditional and allopathic health practitioners. Contribution: This is the first study to explore THPs perceptions and practices regarding EB, a rare disease.

The impact of epidermolysis bullosa on the family and healthcare practitioners: a scoping review.

BACKGROUND: Epidermolysis bullosa (EB) is an inherited genodermatosis that results in mucocutaneous fragility. There is a lack of data on the impact of this disease on parents. There are no studies on the impact on siblings and few on healthcare professionals in dealing with this devastating disease. METHODS: A scoping review was performed using the Arksey and O'Malley and PRISMA-ScR framework. Twenty-seven articles were reviewed, and a data-charting sheet was formulated. RESULTS: Parents make great sacrifices and are resilient in caring for their sick children but are at risk of depression. Siblings play a vital role in caring for their siblings, but their needs may be overlooked because the main focus is on the sibling with EB. Healthcare professionals may suffer burnout and compassion fatigue in caring for patients and their families with EB. CONCLUSION: Comprehensive care of the family and the awareness of the challenges experienced by healthcare professionals is essential to the holistic care of a patient with EB.

Chronic pain and masculine identity: life-world interviews with men at a South African Pain Clinic.

PURPOSE: The purpose was to investigate experiences of men who were living with chronic pain in relation to masculine identity and their experiences of treatment at a Chronic Pain Clinic in South Africa. METHODS: A purposive sample of 14 male patients from an outpatient Chronic Pain Clinic participated in the study in 2019. Qualitative inquiry followed a life-world dialogical interview approach. Respondent validation interviews further engaged participant perspectives. Team data analysis, thematic network diagrams and tabulations were used for analysis of the interview data. . RESULTS: The respondents described multiple challenges of the journey to chronic pain, living with chronic pain, experiences of treatment contexts, ways of coping and the experience of living with chronic pain in relation to masculinity. Three typologies were identified: (1) aligning with hegemonic ideals, (2) a yielding masculinity or (3) an adjusted masculine identity. The findings revealed how masculine identity was positioned by the perceptions of others, interpersonally and within the individual. CONCLUSIONS: Healthcare practitioners and public health can be responsive to the gendered context of living with difficult and long-term pain conditions. Treatment should be supportive and inclusive..

Hegemonic masculinity: combining theory and practice in gender interventions.

The concept of hegemonic masculinity has been used in gender studies since the early-1980s to explain men's power over women. Stressing the legitimating power of consent (rather than crude physical or political power to ensure submission), it has been used to explain men's health behaviours and the use of violence. Gender activists and others seeking to change men's relations with women have mobilised the concept of hegemonic masculinity in interventions, but the links between gender theory and activism have often not been explored. The translation of 'hegemonic masculinity' into interventions is little examined. We show how, in South Africa and Sweden, the concept has been used to inform theoretically-based gender interventions and to ensure that men are brought into broader social efforts to build gender equity. We discuss the practical translational challenges of using gender theory broadly, and hegemonic masculinity in particular, in a Swedish case study, of the intervention Machofabriken [The Macho Factory], and illustrate how the concept is brought to life in this activist work with men. The concept has considerable practical application in developing a sustainable praxis of theoretically grounded interventions that are more likely to have enduring effect, but evaluating broader societal change in hegemonic masculinity remains an enduring challenge.