Qualitative study of the stigma associated with the lived experiences of Buruli ulcer disease among patients in Nigeria (original) (raw)
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Persisting social participation restrictions among former buruli ulcer patients in Ghana and Benin
PLoS neglected tropical diseases, 2014
Buruli ulcer may induce severe disabilities impacting on a person's well-being and quality of life. Information about long-term disabilities and participation restrictions is scanty. The objective of this study was to gain insight into participation restrictions among former Buruli ulcer patients in Ghana and Benin. In this cross-sectional study, former Buruli ulcer patients were interviewed using the Participation Scale, the Buruli Ulcer Functional Limitation Score to measure functional limitations, and the Explanatory Model Interview Catalogue to measure perceived stigma. Healthy community controls were also interviewed using the Participation Scale. Trained native interviewers conducted the interviews. Former Buruli ulcer patients were eligible for inclusion if they had been treated between 2005 and 2011, had ended treatment at least 3 months before the interview, and were at least 15 years of age. In total, 143 former Buruli ulcer patients and 106 community controls from Gha...
Beliefs and attitudes toward Buruli ulcer in Ghana
The American journal of tropical medicine and hygiene, 2002
Buruli ulcer is a devastating emerging disease in tropical countries. Quantitative and qualitative data were obtained by interviewing patients with this disease and control subjects in Ghana. Common perceived causes were witchcraft and curses. Other reported causes were personal hygiene, environment, and close contact with a patient with this disease. Financial difficulties, fear of the mutilating aspects of treatment, and social stigma were the main reasons found for delay in obtaining treatment. Patients are reluctant to seek treatment outside their own community. Patients often expected medical treatment instead of surgery, and underestimated the duration of hospital admission. The stigma of the disease is huge, and is strongly associated with the mysterious nature of the condition, the lack of knowledge about its mode of transmission, and the lack of proper treatment. Stigma scores were higher in unaffected respondents and in a less endemic location. Education on the disease, us...
Psychosocial aspects of health seeking behaviours of patients with Buruli ulcer in southern Benin
Tropical Medicine and International Health, 2003
We investigated cultural beliefs and psychosocial factors associated with Buruli ulcer in southern Benin in order to elaborate and deliver appropriate health education messages. We conducted a qualitative study among 130 adults and 30 children in Zou province, a highly endemic region. Focus group interviews of inhabitants, patients and their assistants, health care professionals and traditional healers took place in Dasso, Ouinhi, Sagon and Zagnanado. Drawing sessions followed by individual interviews were organized among school children in Dasso and Sagon. We found that although Buruli ulcer is well known and recognized -even at a very early stage of the disease -and perceived as threatening, most people are reluctant to seek treatment at the health care centre. They are unclear about the origin of the disease (environmental factors or sorcery) and treatment is considered devastating, expensive and ineffective in some cases.
2014
Introduction Buruli ulcer (BU) is one of the least studied neglected tropical diseases. It is a chronic necrotising skin and soft tissue disease that may also affect the bone. The majority of BU affected people seek medical care only at an advanced stage of the disease. This is often associated with severe disabilities and goes along with social implications (e.g. increased treatment expenses, impaired capacity to work, stigmatisation and social exclusion). Early diagnosis and antibiotic treatment would simplify the treatment and reduce morbidity as well as the involved social and economic constraints. Nevertheless, research into reasons for delayed medical treatment and local perceptions of BU is still insufficient. Aim of the Study This study draws on the need for a better understanding of the local BU specific disease concept and the related health-seeking behaviour. Its primary aim was to adapt an existing instrument (Kroeger’s Framework (1983)) to explain the BU specific health...
Burden of Buruli Ulcer: How Affected Households in a Ghanaian District Cope
2011
Buruli Ulcer (BU) is economically burdensome and socially stigmatising. We examined the burden of BU and the strategies commonly adopted by households in a Ghanaian district to cope with it. Respondents for the study were conveniently sampled using data from a BU unit within the District Health Centre. Adult BU patients and caretakers of minor patients (aged less than 15) who had reported for care within the past year were interviewed. A semi- structured questionnaire was used for the interviews. The staff in-charge of an international NGO with services to BU patients in the district was also interviewed. The disease was associ- ated with poor rural households with mean annual incomes of the equivalent of USD 490.70 or less. Other costs and stigma associated with the disease posed a great burden on the already poor households we studied. Households adopt coping strategies, including sale of assets, reduction in farm sizes, and avoiding people, all of which are potentially risky for ...
PLoS neglected tropical diseases, 2014
Buruli ulcer is a stigmatising disease treated with antibiotics and wound care, and sometimes surgical intervention is necessary. Permanent limitations in daily activities are a common long term consequence. It is unknown to what extent patients perceive problems in participation in social activities. The psychometric properties of the Participation Scale used in other disabling diseases, such as leprosy, was assessed for use in former Buruli ulcer patients. Former Buruli ulcer patients in Ghana and Benin, their relatives, and healthy community controls were interviewed using the Participation Scale, Buruli Ulcer Functional Limitation Score, and the Explanatory Model Interview Catalogue to measure stigma. The Participation Scale was tested for the following psychometric properties: discrimination, floor and ceiling effects, internal consistency, inter-item correlation, item-total correlation and construct validity. In total 386 participants (143 former Buruli ulcer patients with the...
2016
Background: Buruli ulcer (BU) is a neglected tropical disease affecting the skin, tissues and in some cases the bones, caused by the environmental pathogen Mycobacterium ulcerans (M. ulcerans). Its mode of transmission is still elusive. Delayed treatment may cause irreversible disabilities with consequent social and economic impacts on the victim. Socio-cultural beliefs, practices and attitudes in endemic communities have been shown to influence timely treatment causing disease management, prevention and control a great challenge. An assessment of these factors in endemic localities is important in designing successful intervention strategies. Considering this, we assessed the knowledge, attitude and practices regarding BU in three endemic localities in the South West region, Cameroon to highlight existing misconceptions that need to be addressed to enhance prompt treatment and facilitate effective prevention and control. Methods and Findings: A cross-sectional study was executed in three BU endemic health districts. Using qualitative and quantitative approaches we surveyed 320 randomly selected household heads, interviewed BU patients and conducted three focus group discussions (FGDs) to obtain information on awareness, beliefs, treatment, and attitudes towards victims. The influence of socio-demographic factors on these variables was investigated. Results: Respondents (84.4%) had a good knowledge of BU though only 65% considered it a health problem while 49.4% believed it is contagious. Socio-demographic factors significantly (P<0.05) influenced awareness of BU, knowledge and practice on treatment and attitudes towards victims. Although the majority of respondents stated the hospital as the place for appropriate treatment, FGDs and some BU victims preferred witch-doctors/herbalists and prayers, and considered the hospital as the last option. We documented beliefs about the disease which could delay treatment. Conclusion: Though we are reporting a high level of knowledge of BU, there exist fallacies about BU and negative attitudes towards victims in communities studied. Efforts towards disease eradication must first of all target these misconceptions.
Tropical Medicine & International Health, 2007
Buruli ulcer disease (BUD), a devastating tropical disease caused by Mycobacterium ulcerans, occurs in more than 80% of the administrative districts of Ghana. To elucidate community perceptions and understanding of the aetiology of BUD, attitudes towards Buruli patients and treatment-seeking behaviours, we conducted a survey with 504 heads of households and seven focus group discussions in Ga West District, Ghana. Although 67% of participants regarded BUD as a health problem, 53% did not know its cause. Sixteen per cent attributed the cause to drinking non-potable water, 8.1% mentioned poor personal hygiene or dirty surroundings, and 5.5% identified swimming or wading in ponds as a risk factor. About 5.2% thought that witchcraft and curses cause BUD, and 71.8% indicated that BU sufferers first seek treatment from herbalists and only refer to the hospital as a last resort. The main reasons were prospects of prolonged hospital stay, cost of transport, loss of earnings and opportunity associated with parents attending their children's hospitalization over extended period, delays in being attended by medical staff, and not knowing the cause of the disease or required treatment. The level of acceptance of BUD sufferers was high in adults but less so in children. The challenge facing health workers is to break the vicious cycle of poor medical outcomes leading to poor attitudes to hospital treatment in the community. Because herbalists are often the first people consulted by those who contract the disease, they need to be trained in early recognition of the pre-ulcerative stage of Buruli lesions.
PLoS neglected tropical diseases, 2018
In the Cameroon, previous efforts to identify Buruli ulcer (BU) through the mobilization of community health workers (CHWs) yielded poor results. In this paper, we describe the successful creation of a BU community of practice (BUCOP) in Bankim, Cameroon composed of hospital staff, former patients, CHWs, and traditional healers. All seven stages of a well-defined formative research process were conducted during three phases of research carried out by a team of social scientists working closely with Bankim hospital staff. Phase one ethnographic research generated interventions tested in a phase two proof of concept study followed by a three- year pilot project. In phase three the pilot project was evaluated. An outcome evaluation documented a significant rise in BU detection, especially category I cases, and a shift in case referral. Trained CHW and traditional healers initially referred most suspected cases of BU to Bankim hospital. Over time, household members exposed to an innovat...
BMC Public Health, 2012
Background: Ghana is a Buruli ulcer (BU) endemic country yet there is paucity of socio-cultural research on BU. Examining distinctive experiences and meanings for pre-ulcers and ulcers of BU may clarify the disease burden, illness experience and local perceptions of causes and spread, and environmental features of BU, which are useful to guide public health programmes and future research. This study aimed to explain local meanings and experiences of BU for persons with pre-ulcers and ulcers in the Ga-West and Ga-South municipalities in Accra.