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-seeking behaviour as well as to apply and evaluate it on the basis of different research methods. In this course characteristics of people who reported late to governmental health facilities were identified. In addition, measures for improving the disease specific treatment and control as well as health education activities were identified. The suitability of the applied research methods to assess the individual variables of the framework was evaluated to collect relevant data easier and more efficient in the future.
Methods The research was carried out in a rural sub district of the Eastern Region (Ghana). An iterative process using qualitative as well as quantitative research methods was applied. To explore the published evidence on aspects influencing BU specific health-seeking behaviour and to analyse them in a structured way Kroeger’s Framework for health-seeking behaviour (1983) and a systematic literature search served as starting points. To obtain details about local disease concepts, perceptions and treatment practices expert interviews were done. An active community case search (door-to-door screening) in the study area (48 communities, about 23,000 inhabitants) allowed for conducting a knowledge, attitude and practice (KAP) survey among presently and previously BU affected people (N=122) as well as matched non-affected community members (N=122) (similar age and same sex) to identify and assess differences between these two groups. Focus group discussions (FGDs) in selected communities were organized to reveal differences with respect to the disease perception across the research area as well as between previously BU affected and non-affected people.
Results The analysis of 22 retrieved papers allowed for an assessment of the different aspects of health-seeking behaviour according to the literature and the development of the ‘Adapted BU specific Framework for Health Seeking Behaviour’ (version I). 33 expert interviews provided details about the local disease perceptions (e.g. only traditional herbal treatment may heal the spiritual aspects of BU) and treatment practices (e.g. home-based herbal treatment as the preferred treatment option for pre-ulcerative lesions) within the research area. These findings led to further modifications of the framework (‘Modified BU specific Framework for Health-Seeking Behaviour’ (version II). This framework was also used for the development of the KAP questionnaire. The active community case search allowed for identifying and recruiting the participants of the KAP survey. The findings of the survey underlined that the non-affected study participants were less informed about the disease and its treatment options than the (previously) BU affected study participants and allowed for quantifying some of the aspects of the framework. The assessment of the characteristics of ‘Late Care-Seekers’ revealed that this sub group was more likely to depend on transportation to access governmental health facilities, was less informed about the disease, less satisfied with governmental health facilities and less familiar with the fact that antibiotic treatment for BU is provided free of charge. The 12 FGDs in six selected communities have shown that the perception of the disease differs between the communities and that non-affected participants are more informative than the previously BU affected participants.
Discussion The ‘Modified BU specific Framework for Health-Seeking Behaviour’ (version II) and the findings provide disease specific information on the health-seeking behaviour and thereby contribute to the understanding of the local disease concept. The study has shown that there is a need – besides BU specific health education – for an improved access and generally increased attractiveness of government health facilities (including improved supply of medicines and supplies). The research design allowed for an evaluation of the validity of the framework. The results of the systematic literature search provide an overview of the various aspects of the BU specific health-seeking behaviour according to the current research literature. Expert interviews provided explanations for particular local and cultural phenomena (‘Characteristics of BU and Disease Perception’) and allowed to include personal experiences (‘Enabling Factors'). The KAP survey yielded quantified background information on the study population (‘Predisposing Factors’), knowledge about BU and its symptoms as well as the ‘Choice of Health Resources’. In addition, the data set provided the opportunity to examine various subgroups. FGDs were mainly suitable for assessing sensitive aspects (‘Aetiological Model’, ‘Stigma/ Social Exclusion', etc.) to identify and disclose controversial aspects.
Conclusion The ‘Modified BU specific Framework for Health-Seeking Behaviour’ (version II) is a valuable tool to explain the health-seeking behaviour in a structured and quantified way. Due to the different variables of the framework the use or adaptation of the instrument for other endemic areas in Africa appears to be possible. The study delivers knowledge on the local population’s knowledge, attitudes and perceptions of BU as well as challenges regarding the accessibility and use of the available health services in the research area. These insights should be used to develop target group specific interventions to improve both treatment as well as BU specific health education. Moreover, this output underlines further research needs with respect to health-seeking behaviour and the specific reasons for delayed medical treatment as well as the mode of transmission, on-site diagnosis and an improved (home-based) treatment of BU.
}, year = {2015}, journal = {Fakultät für Gesundheitswissenschaften }, volume = {PhD}, pages = {1-291}, publisher = {Universität Bielefeld}, address = {Bielefeld}, url = {https://pub.uni-bielefeld.de/download/2730302/2730309}, language = {eng}, }