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2.
S Afr Fam Pract (2004) ; 66(1): e1-e13, 2024 Jun 06.
Artículo en Inglés | MEDLINE | ID: mdl-38949448

RESUMEN

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.


Asunto(s)
Epidermólisis Ampollosa , Padres , Investigación Cualitativa , Calidad de Vida , Humanos , Epidermólisis Ampollosa/psicología , Epidermólisis Ampollosa/terapia , Padres/psicología , Masculino , Femenino , Niño , Adulto , Entrevistas como Asunto , Persona de Mediana Edad , Sudáfrica , Preescolar , Percepción
3.
Health SA ; 28: 2355, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37927945

RESUMEN

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.

4.
Health SA ; 28: 2266, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37670748

RESUMEN

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.

5.
Int J Dermatol ; 62(4): 459-475, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-35524482

RESUMEN

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.


Asunto(s)
Epidermólisis Ampollosa , Niño , Humanos , Epidermólisis Ampollosa/terapia , Hermanos , Personal de Salud , Atención a la Salud
7.
S Afr J Infect Dis ; 37(1): 368, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35399557

RESUMEN

Background: Patients with atopic dermatitis (AD), the commonest chronic inflammatory skin disease are often colonised and infected by Staphylococcus aureus. In this study, we aimed to determine the type and antibacterial sensitivities of the bacteria infecting eczematous lesions in children with AD and to recommend first-line antibiotic therapy. Methods: A prospective study was conducted from June 2020 to June 2021 in children with AD presenting with a cutaneous infection at the King Edward hospital VIII outpatient dermatology clinic. Swabs were collected for microbial culture, confirming infections and assessing antibiotic sensitivity for infected sites. Results: Ninety six children were recruited during the study period with a mean age of 4.3 ± 3.4 years. The commonest cause of bacterial infection was Staphylococcus aureus seen in 74 (77.1%) cases, followed by Staphylococcus aureus and Group A ß-haemolytic streptococcus (GAS) co-infection in 22 (22.9%) cases. The majority of these infections were observed on the lower limbs in 50 (52.08%) cases and in moderate 37 (38.5%) cases and severe eczema cases of 38 (39.6%) in AD. There was no gender predilection. Staphylococcus aureus was sensitive to amoxicillin-clavulanic acid in 57 (77.0%) cases, cloxacillin in 53 (71.6%) cases and clindamycin in 24 (32.4%) cases, whereas GAS was mostly sensitive to ampicillin in 10 (45.5%) cases. No swabs retained a resistant strain. Conclusion: Staphylococcus aureus is the commonest bacterial cause of cutaneous infection in children with AD in our setting. Amoxicillin-clavulanic acid and cloxacillin remain the most sensitive therapeutic options for this infection, however, a larger study is required to explore resistance strains, if any, in our setting.

8.
Int J Dermatol ; 61(3): 259-265, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34310691

RESUMEN

BACKGROUND: Mucocutaneous diseases (MCD) have been commonly described among human immunodeficiency virus (HIV) infected patients before the combined antiretroviral therapy (cART) era. There is limited data on the frequency and type of MCD in the cART era in African children and adolescents. This study aimed to describe the prevalence and spectrum of MCD in South African children and adolescents seropositive for HIV on cART. METHODS: A cross-sectional study of 310 participants aged 0-19 years attending a public sector ART clinic at King Edward VIII Hospital, Durban, South Africa, was conducted. Demographic, clinical, and laboratory information was obtained from the participants and hospital records. Participants were examined. Data were collated and analyzed with SPSS version 23. RESULTS: MCD were observed in 77.4% of HIV-infected children. The prevalence was higher among males and adolescents above 16 years old (83.9%). Infectious skin disorders (44.7%) were less common than noninfectious dermatoses (55.3%). More common disorders encountered included generalized pruritus (32.6%), fungal infections (20.9%), and inflammatory (20.4%) and pigmentary (20.4%) skin disorders. Tinea capitis and pedis were the most prevalent fungal infections, while oral candidiasis (0.2%) was the least. Inflammatory skin disorders and dyschromia appeared to be more common than in the pre-cART era. CONCLUSIONS: While MCD are still common in HIV-infected children and adolescents in the cART era, the pattern and types of disorders have changed to a predominance of non-infectious dermatoses.


Asunto(s)
Infecciones por VIH , Adolescente , Adulto , Niño , Preescolar , Estudios Transversales , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/epidemiología , Humanos , Lactante , Recién Nacido , Masculino , Prevalencia , Piel , Sudáfrica/epidemiología , Adulto Joven
9.
S Afr Fam Pract (2004) ; 63(1): e1-e5, 2021 01 15.
Artículo en Inglés | MEDLINE | ID: mdl-33567838

RESUMEN

BACKGROUND: Dermatological diseases are amongst the commonest reasons for consultation at primary care level. Yet, dermatology teaching in medical and nursing curricula is inconsistent and often insufficient to enable medical and nursing professionals to manage these conditions effectively. METHODS: We tested the knowledge of 100 doctors and 195 nurses who attended dermatology training sessions held in three health districts in the province of KwaZulu-Natal (KZN), South Africa, by using a quasi-experimental uncontrolled before-and-after study design. At the start of the session, participants were exposed to 15 slides representing common dermatological conditions; this was followed by a test. The participants then attended a series of short lectures followed by the same test. Pre- and post-intervention test scores were compared, and the results were analysed by professional status, health district and type of facility. RESULTS: The mean (standard deviation [SD]) pre-intervention test score was 40.6% (20.5%). Doctors scored significantly higher than nurses (p 0.0001). There were significant differences in performance by district (p 0.001) and type of facility (p 0.001). The mean (SD) post-intervention score improved to 68.7% (22.5%). CONCLUSION: Doctors and nurses working in the primary care sector appear to be insufficiently trained in the management of common dermatological conditions. A short period of in-service training resulted in an immediate, significant improvement in knowledge, although we did not study long-term retention beyond this. We recommend improved prequalification training in dermatology in medical and nursing schools and an expansion of continuing professional development as well as in-service training opportunities for primary care practitioners.


Asunto(s)
Dermatología , Médicos , Personal de Salud , Humanos , Atención Primaria de Salud , Sudáfrica
10.
Int J Dermatol ; 59(12): 1520-1521, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-33040345

Asunto(s)
Prisioneros , Humanos , Masculino , Pene
11.
South Afr J HIV Med ; 20(1): 944, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31308970

RESUMEN

BACKGROUND: Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are severe life-threatening mucocutaneous reactions. There is an ongoing controversy regarding the use of systemic corticosteroids and intravenous immunoglobulin (IVIG) in SJS/TEN and their utility in HIV-infected patients. OBJECTIVES: The objective was to assess the outcome of a combination of intensive supportive care with oral corticosteroids in SJS and a combination of systemic steroids and IVIG for 3 consecutive days in HIV-infected patients with TEN. In addition, we assessed management in a general dermatology ward without implementing wound debridement. METHODS: This was a retrospective cohort study of 36 HIV-infected adults with SJS/TEN admitted to a tertiary dermatology unit between 1st January 2010 and 31st July 2011. Standard-of-care protocols included identification and elimination of the possible causative drug, meticulous wound care without debridement, initiation of oral prednisone (1 mg/kg/day) on admission for 3 consecutive days, and the addition of IVIG (1 g/kg/day) for 3 consecutive days to those with TEN. RESULTS: Of the 36 patients in the study, 32 were female. Nevirapine was the commonest drug implicated. A diagnosis of tuberculosis did not increase the case fatality rate. Complications included infections, anaemia, drug-induced hepatitis, ocular involvement, renal impairment, deep vein thrombosis, respiratory distress, Leucopenia, gastritis and hypernatremia. The overall survival rate was 97%. CONCLUSION: HIV-infected SJS and TEN patients were treated in a tertiary dermatology ward with a treatment plan of skin care, and a combination of systemic corticosteroids and IVIG respectively had a survival rate of 97%.

12.
South. Afr. j. HIV med. (Online) ; 20(1): 1-8, 2019. tab
Artículo en Inglés | AIM (África) | ID: biblio-1272217

RESUMEN

Background: Stevens­Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are severe life-threatening mucocutaneous reactions. There is an ongoing controversy regarding the use of systemic corticosteroids and intravenous immunoglobulin (IVIG) in SJS/TEN and their utility in HIV-infected patients.Objectives: The objective was to assess the outcome of a combination of intensive supportive care with oral corticosteroids in SJS and a combination of systemic steroids and IVIG for 3 consecutive days in HIV-infected patients with TEN. In addition, we assessed management in a general dermatology ward without implementing wound debridement.Methods: This was a retrospective cohort study of 36 HIV-infected adults with SJS/TEN admitted to a tertiary dermatology unit between 1st January 2010 and 31st July 2011. Standard-of-care protocols included identification and elimination of the possible causative drug, meticulous wound care without debridement, initiation of oral prednisone (1 mg/kg/day) on admission for 3 consecutive days, and the addition of IVIG (1 g/kg/day) for 3 consecutive days to those with TEN.Results: Of the 36 patients in the study, 32 were female. Nevirapine was the commonest drug implicated. A diagnosis of tuberculosis did not increase the case fatality rate.Complications included infections, anaemia, drug-induced hepatitis, ocular involvement, renal impairment, deep vein thrombosis, respiratory distress, Leucopenia, gastritis and hypernatremia. The overall survival rate was 97%.Conclusion: HIV-infected SJS and TEN patients were treated in a tertiary dermatology ward with a treatment plan of skin care, and a combination of systemic corticosteroids and IVIG respectively had a survival rate of 97%


Asunto(s)
Inmunoglobulinas Intravenosas , Sudáfrica , Síndrome de Stevens-Johnson
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