Lived experiences of tuberculosis patients and their implications for early tuberculosis case identification and management in pastoralist community setting: a qualitative study in Borena zone, Oromia region of Ethiopia.
ABSTRACT: BACKGROUND:Ethiopia has highly diversified population with notable socioeconomic and cultural differences. Regardless of the differences, short course directly observed treatment,where patients should take drugs under direct observasion of health care providers, is uniformly applied all over the country. Evidences are scarce on how well does this uniform approach fits with the pastoral community setting. The purpose of this study was to explore lived experiences of TB patients in the pastoral community under the uniform approach, and their implications to early case identification and management. METHOD:Qualitative method with phenomenological study design was undertaken to explore lived experiences of TB patients. Patients from all levels of health care (hospital, health center and health post) were included. Experience of both drug susceptible and drug resistant TB patients were documented. Twenty one patients, who consented to in the study, were selected by a convenience sampling method. In-depth interview was conducted using a semi-structured interview guide and the interview ended subsequent to information saturation. The interview was audio recorded; and field notes were also taken. Data analysis was done concurrently with the data collection using a word processor designed for qualitative text analysis. InductiveThematic analysis was undertaken to identify key themes. RESULTS:Twenty one patients (eight from hospitals, nine from health centers and four from health posts) were interviewed. Three of the eight hospital patients were on drug resistant tuberculosis (TB) treatment. Sixty two codes, five code categories and three themes emerged from the interviews. The three themes were health system, stigma and discrimination, and socioeconomic problem related experiences. Inaccessibility to health facilities due to scattered settlement and mobility, delay in care seeking TB symptoms, low index of suspecting TB by care providers, fear of stigma and indirect treatment related costs were some of the codes identified. CONCLUSION:TB patients in the pastoral setting were experiencing multifaceted challenges with the current application of 'one-size-fits-all' approach which implied hampered timely case identification and compromised patient management. Therefore, designing context appropriate intervention approach is required to ensure unprejudiced services.
Project description:BACKGROUND:Hong Kong has gained a good reputation for its quality public health care services. However, there is a growing recognition that social stigma is a potential obstacle when female sex workers (FSWs) access health care services. There are a lack of studies focusing on how FSWs experience and cope with stigma when accessing health care services in Hong Kong. OBJECTIVE:This study aims to explore how FSWs experience stigma and develop coping strategies when accessing health care services in Hong Kong. METHODS:This is a qualitative interview study. Staff of non-governmental organizations (NGOs) that serve sex workers in Hong Kong facilitated the process of recruiting the participants. In-depth individual interviews were conducted with 22 FSWs, focusing on their experiences of stigma and coping strategies when accessing health care services. A directed content analysis approach was adopted to analyze the data. RESULTS:The interview data can be grouped into three themes: experience of stigma in the health care setting; coping with the stigma of sex work; and the call for non-judgmental holistic health care. CONCLUSION:This study contributes to an understanding of the experience of stigma and stigma coping strategies of FSWs when accessing health care services in Hong Kong. stigma remains an important issue for a large proportion of FSWs when they seek timely professional help, openly disclose their sex work identity, and receive comprehensive health care services. The study also highlights the need to address multiple healthcare needs of FSWs beyond STDs. Moreover, the study contributes to increasing awareness of, and respect for, the human right of FSWs to receive non-discriminatory health services.
Project description:<h4>Background</h4>Tuberculosis affected 2.7 million people in India in 2017. The Revised National TB Control Programme has achieved milestones in coverage, however quality of TB care remains highly variable and often poor, with significant gaps in provider knowledge, practices, and patients consistently lost to follow-up. These quality gaps are largely informed by studies on provider practices or objective chart abstractions and case data. Per the knowledge of the author, no review has been conducted on first-hand patient perspectives on the quality of TB care they receive. This mixed-methods literature review aims to synthesize evidence on user-experience and patient satisfaction with TB care in India and inform areas for service quality improvement.<h4>Methods</h4>Five medical databases, including PubMed, EMBASE, Global Health (Ovid), Web of Science, and CINAHL were searched for empirical studies on patient perspectives on TB health services published between January 1st, 2000 to December 31st, 2017. Studies in English with adult patients with any form of TB in the public or private health system were included. Studies prior to entering the health system, on distance to health facilities and cost were excluded. Seven Indian journals were hand searched and a grey literature search was conducted in GoogleScholar. Studies were assessed for methodological quality and thematic analysis was conducted by categorizing data using NVivo 12.<h4>Results</h4>A total of 498 studies were screened, of which 23 met the inclusion criteria. 16 supplementary studies were identified from Indian journals and grey literature. Of the 39 total studies included most were quantitative (29; 74%), based in South India (17; 44%) and focused on drug-sensitive TB patients (19; 49%) within the public health system (25; 64%). Data collection methods were highly heterogenous which limited synthesis and comparisons across population demographics, health sectors, or regions. Overall quantitative patient satisfaction measured in seven studies was high. Two major themes identified were provider-related factors (<i>n</i>?=?26 studies) and convenience (<i>n</i>?=?25), and six minor themes were supplies and equipment availability (<i>n</i>?=?12), confidence (<i>n</i>?=?10), information and communication (<i>n</i>?=?10), waiting time (<i>n</i>?=?8), stigma (<i>n</i>?=?4), and confidentiality (<i>n</i>?=?4). Each reported positive and negative user-experiences. Most significantly, DOTS did not fit the daily needs and obligations of many patients, particularly due to conflicts with employment and frequency of visits; while positive provider support, information, and flexibility helped patients adhere to treatment.<h4>Conclusion</h4>Although quantitative patient satisfaction was found to be high, data were not collected using robust, validated tools. Qualitative and quantitative user-experiences in each theme were variable, making them both barriers and facilitators of good quality TB care. Poor user-experiences were often responsible for patients interrupting treatment or dropping out of TB care. Patient-centeredness, or user-friendliness of TB care can be improved by introducing individualized or flexible DOTS that is responsive to user circumstances and needs. User-experience data should be systematically collected using a standardized, national tool for identification of specific bottlenecks and successes in quality of TB care from the patients' perspective.
Project description:Perceptions of people living with chronic illness change over time, contributing to health-related stress that necessitates coping skills. Paterson's shifting perspectives model provides an explanation of chronically ill people's variations in attention to their symptoms. In this qualitative study, 20 people with fibromyalgia living in a rural setting were interviewed in 2013 with the aim of gaining insight into their experiences and the meaning-making associated with their chronic condition. Analysis of the interview data categorized five recurrent, or common, themes: experiences of loss, feelings of fear and uncertainty, influence of stress, stigmatization of the disease, and coping through courage. Difficulties attendant to losses, distress, and stigma associated with this chronic condition led the participants to report poor health-related quality of life. The study findings can be useful across clinical settings to nurses and other health care providers in understanding those diagnosed with fibromyalgia and their care needs.
Project description:Sexual minority individuals (e.g., lesbian, gay, bisexual people) face sexual health inequalities related to their experiences with providers in sexual health care settings, yet few prior studies have focused on these experiences. In the current study, we analyzed qualitative interviews with a diverse sample of 58 sexual minority individuals from three age cohorts in the United States to explore sexual minority people's perspectives of sexual health care. Thematic content analysis revealed four key themes: erasure, enacted stigma, felt stigma, and affirmative care. Subgroup differences in themes across gender, sexual identity, race/ethnicity, and age cohort were also assessed. Women and genderqueer participants reported erasure in the context of identity dismissal in family planning conversations, and men reported felt stigma in the context of hyperawareness of sexual minority identity. Some sexual minority people of color also reported intersectional felt stigma as a result of multiple marginalized identities. Additionally, fewer men reported erasure compared to women or genderqueer people and fewer gay and lesbian participants reported erasure than bisexual or queer people. Implications of these findings include the need for more sexual minority health care initiatives and training and the development of affirmative care practices for sexual minority populations, including those with multiple marginalized identities.
Project description:<h4>Background</h4>Current data indicates 70% of adults with obesity report experiencing bias and stigmatisation when engaging with healthcare. Most studies to date, have focused on weight bias from a healthcare professional's perspective. Few have explored weight bias from the perspective of the individual living with obesity and no study has conducted this research in the Irish context.<h4>Aims</h4>This study explored, the lived-in experience of individuals afflicted with obesity, when interacting with the Irish healthcare system. It examined whether participants encountered weight bias and stigma, if so, how it may have impacted them and gathered their suggestions on how it could be best addressed.<h4>Methods</h4>Employing a phenomenological approach, purposive sampling and semi-structured interviews were conducted with 15 individuals living with class II (BMI 35.0-39.9) or III obesity (BMI ≥40kg/m2) who reported regular and consistent engagement with the Irish healthcare system. Predominant emergent themes were categorised using the interview domains; (1) experiences of obesity bias and stigma, (2) impact of this bias and stigma and (3) suggested avenues to reduce bias and stigma.<h4>Findings</h4>Participants reported experiencing high levels of weight bias and stigmatisation. Relating to experiences, three themes were identified; interpersonal communication, focus of care and physical environment. In terms of its impact, there were two emergent themes; negativity towards future healthcare and escalation of unhealthy behaviours. Suggested avenues to eliminate bias and stigma included the introduction of a timely and clear clinical pathway for obesity management and a focus on HCPs education in relation to obesity causes and complexity.<h4>Conclusions</h4>Outside of specialist obesity tertiary care, weight bias and stigmatisation is commonly reported in the Irish healthcare system. It is a significant issue for those living with obesity, detrimental to their physiological and psychological health. A concerted effort by HCPs across clinical, research and educational levels is required to alleviate its harmful effects.
Project description:Background. Tuberculosis (TB) remains a significant global public health problem with known gender-related (male versus female) disparities. We reviewed the qualitative evidence (written/spoken narrative) for gender-related differences limiting TB service access from symptom onset to treatment initiation. Methods. Following a systematic process, we searched 12 electronic databases, included qualitative studies that assessed gender differences in accessing TB diagnostic and treatment services, abstracted data, and assessed study validity. Using a modified "inductive coding" system, we synthesized emergent themes within defined barriers and delays limiting access at the individual and provider/system levels and examined gender-related differences. Results. Among 13,448 studies, 28 studies were included. All were conducted in developing countries and assessed individual-level barriers; 11 (39%) assessed provider/system-level barriers, 18 (64%) surveyed persons with suspected or diagnosed TB, and 7 (25%) exclusively surveyed randomly sampled community members or health care workers. Each barrier affected both genders but had gender-variable nature and impact reflecting sociodemographic themes. Women experienced financial and physical dependence, lower general literacy, and household stigma, whereas men faced work-related financial and physical barriers and community-based stigma. Conclusions. In developing countries, barriers limiting access to TB care have context-specific gender-related differences that can inform integrated interventions to optimize TB services.
Project description:Behavioral health integration (BHI) changes the paradigm of primary care delivery by integrating behavioral healthcare into primary care. Thus, BHI likely alters the shared experiences of both patients and providers in an interrelated manner; however, their experiences are usually evaluated separately. The purpose of this study was to analyze these shared experiences together within patient-provider pairs in integrated clinics. First, patient interviews were conducted using semi-structured interview guides and transcripts were analyzed for major themes of patient experience. Next, providers named in patient interviews were interviewed around these same themes. Thematic analysis was performed on 18 transcripts (11 patients, 7 providers). Common themes included BHI experience, pain management, feeling heard by providers, and health care experiences. Areas of alignment included positive perception of BHI, an absence of long-term care, and a desire to share decision-making. Pain management was a persistent area of conflict, and the differing experiences were consistent with a change in the psychodynamic patient-provider model. This conflict highlights a gap in BHI and a need for provider education about psychodynamic relationship models.
Project description:<h4>Background</h4>Patients being treated for recurrent or multidrug-resistant tuberculosis (TB) require long courses of injectable anti-tuberculous agents. In order to maintain strong TB control programmes, it is vital that the experiences of people who receive long-term injectables for TB are well understood. To investigate the feasibility of a novel model of care delivery, a clinical trial (The TB-RROC Study) was conducted at two central hospitals in Malawi. Hospital-based care was compared to a community-based approach for patients on TB retreatment in which 'guardians' (patient-nominated lay people) were trained to deliver injections to patients at home. This study is the qualitative evaluation of the TB-RROC trial. It examines the experiences of people receiving injectables as part of TB treatment delivered in hospital and community-based settings.<h4>Methods</h4>A qualitative evaluation of the TB-RROC intervention was conducted using phenomenographic methods. Trial participants were purposively sampled, and in-depth interviews were conducted with patients and guardians in both arms of the trial. Key informant interviews and observations in the wards and community were performed. Thematic content analysis was used to derive analytical themes.<h4>Results</h4>Fourteen patients, 12 guardians and 9 key informants were interviewed. Three key themes relating to TB retreatment emerged: medical experiences (including symptoms, treatment, and HIV); the effects of the physical environment (conditions on the ward, disruption to daily routines and livelihoods); and trust (in other people, the community and in the health system). Experiences were affected by the nature of a person's prior role in their community and resulted in a range of emotional responses. Patients and guardians in the community benefited from better environment, social interactions and financial stability. Concerns were expressed about the potential for patients' health or relationships to be adversely affected in the community. These potential concerns were rarely realised.<h4>Conclusions</h4>Guardian administered intramuscular injections were safe and well received. Community-based care offered many advantages over hospital-based care for patients receiving long-term injectable treatment for TB and their families.
Project description:BACKGROUND:People who are houseless (also referred to as homeless) perceive high stigma in healthcare settings, and face disproportionate disparities in morbidity and mortality versus people who are housed. Medical students and the training institutions they are a part of play important roles in advocating for the needs of this community. The objective of this study was to understand perceptions of how medical students and institutions can meet needs of the self-identified needs of the houseless community. METHODS:Between February and May 2018, medical students conducted mixed-methods surveys with semi-structured qualitative interview guides at two community-based organizations that serve people who are houseless in Portland, Oregon. Medical students approach guests at both locations to ascertain interest in participating in the study. Qualitative data were analyzed using thematic analysis rooted in an inductive process. RESULTS:We enrolled 38 participants in this study. Most participants were male (73.7%), white (78.9%), and had been houseless for over a year at the time of interview (65.8%). Qualitative themes describe care experiences among people with mental health and substance use disorders, and roles for medical students and health-care institutions. Specifically, people who are houseless want medical students to 1) listen to and believe them, 2) work to destigmatize houselessness, 3) engage in diverse clinical experiences, and 4) advocate for change at the institutional level. Participants asked healthcare institutions to use their power to change laws that criminalize substance use and houselessness, and build healthcare systems that take better care of people with addiction and mental health conditions. CONCLUSIONS:Medical students, and the institutions they are a part of, should seek to reduce stigma against people who are houseless in medical systems. Additionally, institutions should change their approaches to healthcare delivery and advocacy to better support the health of people who are houseless.
Project description:BACKGROUND:Stigma is one of the many factors hindering tuberculosis (TB) control by negatively affecting hospital delay and treatment compliance. In Zambia, the morbidity and mortality due to TB remains high, despite extended public health attempts to control the epidemic and to diminish stigma. STUDY AIM:To enhance understanding of TB-related stigmatizing perceptions and to describe TB patients' experiences of stigma in order to point out recommendations to improve TB policy. METHODS:We conducted a mixed method study at Kanyama clinic and surrounding areas, in Lusaka, Zambia; structured interviews with 300 TB patients, multiple in-depth interviews with 30 TB patients and 10 biomedical health workers, 3 focus group discussions with TB patients and treatment supporters, complemented by participant observation and policy analysis of the TB control program. Predictors of stigma were identified by use of multivariate regression analyses; qualitative analysis of the in-depth interviews, focus group discussions and participant observation was used for triangulation of the study findings. RESULTS:We focused on the 138/300 patients that described TB-related perceptions and attitudes, of whom 113 (82%) reported stigma. Stigma provoking TB conceptions were associated with human immunodeficiency virus (HIV)-infection, alleged immoral behaviour, (perceived) incurability, and (traditional) myths about TB aetiology. Consequences of stigma prevailed both among children and adults and included low self-esteem, insults, ridicule, discrimination, social exclusion, and isolation leading to a decreased quality of life and social status, non-disclosure, and/or difficulties with treatment compliance and adherence. Women had significantly more stigma-related problems than men. CONCLUSIONS:The findings illustrate that many TB patients faced stigma-related issues, often hindering effective TB control and suggesting that current efforts to reduce stigma are not yet optimal. The content and implementation of sensitization programs should be improved and more emphasis needs to be placed on women and children.