A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
Mark Kaddumukasakaddumark yahoo.co.ukHaddy NalubwamaCarol BlixenNelson SewankamboMartha SajatovicElly Katabira
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Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed.In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed.The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6-18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE.In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings.Keywords:
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AbstractDrawing on Earnshaw and Chaudoir's HIV stigma framework, this study explored the experiences of persons living with HIV and AIDS regarding stigmatization and discrimination in accessing health services. Using a qualitative research methodology, 42 participants were purposively recruited during support group meetings of persons living with HIV and AIDS (PLWHA) at Amasaman in Accra, Ghana. Four focus group discussions (n = 22) and 10 in-depth interviews were conducted. Discussions and interviews were audio-taped, transcribed, and categorized based on the objectives of the study. The findings indicated that PLWHAs had knowledge of stigma that was experienced through enacted, anticipated, and internalized stigma mechanisms. Evidence showed that PLWHA did not experience stigma and discrimination when they accessed services at the Korle-Bu Teaching Hospital, the largest hospital in Ghana. However, the situation was different when they accessed services at other public health facilities. Based on the findings, implications are discussed for policy, social work, and public health practices.KEYWORDS: HIVAIDSGhanahealth care providersstigmatizationdiscrimination
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To explore the role of media during mass casualty events and its impact on people.The qualitative thematic content analysis was conducted at Jinnah Sindh Medical University, Karachi, from 2018 to 2020 and comprised of semi-structured in-depth interviews and focus group discussions involving participants from the health sector and policymakers at the provincial level. The Frontline Workers such as the ambulance drivers and the first-aid-givers were also included. Data was subjected to conventional content analysis to generate themes.There were 5 in-depth interviews and 4 focus group discussions in the study. Qualitative analysis revealed that the media has a great deal to do in times of a disaster. The media is the strongest weapon and largely impacts people's mind and behaviour, but it has been playing with their emotions and creating unrest among them.There is a need for the policymakers to set guidelines and define the role of the media in times of a disaster.
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Intrauterine devices (IUD) are important for ensuring neither unplanned pregnancies, nor unsafe abortions occur as well as it helps spacing children among couples. Despite its advantages, its utilization is still inadequate. The underlying causes of low IUD use needs further exploration for a better understanding as well as appropriate handling of the gaps.To explore the perceptions regarding intrauterine devices among women aged 15 to 49 years and barriers to its utilisation in Kinondoni Municipal Council.The study was a community-based exploratory study adopting qualitative approach. Five wards were randomly selected in Kinondoni. Data were collected through in-depth interviews (IDIs) and focus group discussions (FGDs). Study participants were purposively sampled for both IDIs and FGDs. Ten (10) women were interviewed in IDIs from all selected wards and Thirteen FGDs were conducted. Thematic analysis was done to analyze qualitative data, into codes, sub-themes, and broader themes. Data analysis was done by using QSR NVivo version 14.The study involved 10 women aged 15 to 49 years as key informants and 13 FGDs were conducted involving two groups of women of reproductive age, five groups who ever used the method, and six groups who never used it. The study identified perceived barriers towards IUD related to cultural perspectives, negative perception, fear of side effects, individual's insecurity, perceived benefits related to baby's health and parental benefits. Challenges identified were lack of proper information that is; misinformation and misguidance from the health workers, and negative influencers which include intimacy and devices' related factors.This study demonstrated that women have different perceptions regarding utilisation of IUD. Perceptions were categorized into perceived barriers and perceived benefits regarding utilization of IUD. Awareness and knowledge on importance of modern contraceptives (including IUD) should be raised. Also, healthcare workers should ensure enhancement of IUD utilization through teaching the community in a comprehensive manner.
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Abstract Background and Aims: This study aimed to identify adolescents’ knowledge and attitudes towards healthy eating and their needs and preferences towards school-based nutrition interventions, thus investigating the “must have” components on school-based nutrition interventions than can improve adolescents’ dietary patterns. Material and Methods: To reach the proposed aims, we used a qualitative strategy of inquiry, by conducting semi-structured focus groups. We collected data in two urban schools from Cluj-Napoca, Romania. 32 adolescents aged 11 to 14 years old attended focus group discussions. Focus group discussions were audio-taped, transcribed and analyzed using thematic analysis. Results: A viable strategy to deliver effective nutrition interventions for adolescents needs to address adolescents' interests and concerns, use visuals and stories to present nutrition related information, increase adolescents' self-efficacy in choosing healthy foods, train adolescents in having a balanced diet, promote healthy eating as acceptable for peers, and involve parents in nutrition interventions through home-based activities. Conclusions: Improving adolescents' nutrition related knowledge and behavior and creating supportive environments is not sufficient in improving adolescents' dietary patterns. Practitioners should aim at designing school-based nutrition interventions addressing adolescents' specific needs and rely on the needs assessment process as a major component of the design.
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Abstract Epilepsy-associated stigma has long been recognized as a significant cause of psychosocial morbidity for people with epilepsy. This paper reviews the available literature addressing interventions aimed at reducing epilepsy-associated stigma and briefly discusses future that may assist in the development of effective interventions.
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People living with HIV (PLWH) continue to endure stigma and discrimination in the context of health care. This paper presents the findings of a qualitative study designed to (a) describe stigmatizing and discriminatory practices in health care settings, and (b) explore both symbolic and structural stigma from the perspectives of PLWH. For the purpose of this qualitative study, 21 semi-structured in-depth interviews were conducted in the province of Quebec, Canada. The data were analyzed following the principles of thematic analysis. During analysis, three themes were identified, and relations between these themes were delineated to reflect the experiences of participants. The findings suggest that HIV-related stigma in health care settings is episodic in nature. The findings also suggest that HIV-related stigma is experienced through interactions with health care providers (symbolic stigma) and, finally, that it is applied systematically to manage risk in the context of health care (structural stigma).
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Objective: Epilepsy is the most common serious neurological disorder worldwide, affecting 50 million people. Epilepsy is one of the most stigmatizing disorders worldwide and a prototype for a stigmatizing disorder with its dramatic and often scaring symptoms and signs. In this review, I discuss the following definition; stigma and discrimination; historical background; factors affecting stigma; how to decrease the stigma of epilepsy and burden of stigma and conclusion. Result: People with epilepsy (PWE) devalued and stigmatized. False historical background, uncorrected knowledge and attitude about epilepsy, psychosocial factors of epilepsy and uncontrolled epilepsy lead to stigma of epilepsy. The factors affect stigmas are false historical background of epilepsy, psychological aspects of epilepsy, knowledge, attitudes towards patients with epilepsy, uncontrolled epilepsy and effect of Antiepileptic drugs. Significance: To proper manage of epilepsy, we should know the factors lead to stigma. Stigma of epilepsy has impact effect upon patients, relatives and society.
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Background: Home exercise programs are widely used in the treatment of knee osteoarthritis (OA). However, adherence to these exercises decreases in the long term due to different factors. In recent years, new approaches are being developed to increase exercise adherence (EA) for patients with OA. Although it is known that EA is low in Turkish patients, there is no study that examines the barriers of adherence to home exercise programs in patients with OA by qualitative research methods. Objectives: Aim of our study was to investigate the barriers and facilitators for adherence of home-based exercises for knee osteoarthritis management from the perspective of physiotherapists and patients. Methods: A Qualitative study by using focus groups discussions and semi-structured interviews were designed to investigate the barriers and facilitators to home-based exercise program adherence for OA. Two researchers facilitated focus group interview. Participants of focus group members were eight physiotherapists (PT) working with OA with different experience levels. Third researcher conduct the interviews which lasted 30-60 minutes with patients (patients with knee OA, n=5 ages>50). Data were audio recorded, transcribed verbatim and thematically analyzed with NVIVO 12 software. Three researchers conducted the thematic analysis to ensure the validity. Results: In total, 25 main themes from the focus group discussions and interviews were determined. Major barrier themes from focus group were (a) beliefs to exercise benefits (b) patient education and (c)fear avoidance beliefs on exercise; from the interviews were (a)negligence of self-management (b)fatigue and (c)patient education. Patients and therapists all agreed for patient education is one of the most important factors for home EA. Patients wanted to get education on arthritis management. A patient said: “Actually, the clinicians should give information more deeply. I don’t know which is correct for me after therapy, resting or moving?” Major facilitator themes from the focus group were (a)motivation from PT (b)client-centred exercise (c)digital technology; from interviews were (a) motivational approaches of therapists (wats-up messages) (b) having pain and (c)patient education for disease management. Therapists agreed on that personalized exercise is the most important facilitator. A therapist commented, “If the personalized exercise given the patient with correct intensity and repetitions, I don’t think that patients would not do their home exercises.” Conclusion: This is the first qualitative study about exercise adherence in knee osteoarthritis in Turkey. It has been determined that the lack of education and motivation are the most important barriers. More studies are needed to examine the factors affecting EA for patients with OA. In future studies, implementations to increase home EA on Turkish patients with OA should be investigated by qualitative research methods. References: [1]MacKay C. Qualitative study exploring the factors influencing physical therapy management of early knee osteoarthritis in Canada. BMJ 2018 open. [2]Carmona-Terés, Understanding knee osteoarthritis from the patients’ perspective: a qualitative study.” BMC musculoskeletal disorders 18.1 (2017): 225. [3]Marlene F.Exercise for osteoarthritis of the knee: a Cochrane systematic review. British journal of sports medicine 2015 49(24). Disclosure of Interests: None declared
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Tuberculosis (TB) is the tenth leading cause of death worldwide. About 1.3 million people die from TB each year, and most of them are in developing countries. The stigma associated with TB is a barrier to seeking treatment and adequate care. It causes a delay in treatment-seeking and diagnosis and thus decreases the likelihood of being cured and ultimately leads to death. The objective of this study was to explore the perceptions, attitudes, experiences, and opinions about stigma related to TB among adults infected with TB and adults who were not infected with TB. Our study was qualitative in nature. The study was conducted in the community of Bolgatanga municipality of the upper-east region of Ghana. Three focus group discussions (FGDs) were conducted; one with six TB-infected females, one with seven TB-infected males, and one with six non-TB-infected participants. Data were analyzed using qualitative content analysis and presented in pre-defined and/or emerging themes: perception about signs and symptoms observed by TB infected person, attitudes towards TB patients before and after diagnosis, reasons for stigmatization, perception about diagnostic testing, and taking the drugs. Transcripts of the discussions were read, and a list of meanings for units, codes, and themes was generated on the research question. We identified the existence of stigma associated with TB. TB-infected male patients had more autonomy in decision-making about receiving treatment and other family matters compared to female TB patients. TB-infected women suffered more economic vulnerability due to the loss of their work, and the stigma was worsened due to delayed diagnosis and treatment, and they were regarded as liabilities rather than assets. TB-infected patients became stigmatized because non-TB-infected community participants did not want to come into close contact with them. Our findings suggest heightening of advocacy, communication, social mobilization, and health education on TB in the community of Bolgatanga municipality is needed to allay TB-related stigma, especially for women.
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