Access to health care for people with disabilities in rural Malawi: what are the barriers?

BACKGROUND: People with disabilities experience significant health inequalities. In Malawi, where most individuals live in low-income rural settings, many of these inequalities are exacerbated by restricted access to health care services. This qualitative study explores the barriers to health care access experienced by individuals with a mobility or sensory impairment, or both, living in rural villages in Dowa district, central Malawi. In addition, the impact of a chronic lung condition, alongside a mobility or sensory impairment, on health care accessibility is explored. METHODS: Using data from survey responses obtained through the Research for Equity And Community Health (REACH) Trust's randomised control trial in Malawi, 12 adult participants, with scores of either 3 or 4 in the Washington Group Short Set (WGSS) questions, were recruited. The WGSS questions concern a person's ability in core functional domains (including seeing, hearing and moving), and a score of 3 indicates 'a lot of difficulty' whilst 4 means 'cannot do at all'. People with cognitive impairments were not included in this study. All who were selected for the study participated in an individual in-depth interview and full recordings of these were then transcribed and translated. RESULTS: Through thematic analysis of the transcripts, three main barriers to timely and adequate health care were identified: 1) Cost of transport, drugs and services, 2) Insufficient health care resources, and 3) Dependence on others. Attitudinal factors were explored and, whilst unfavourable health seeking behaviour was found to act as an access barrier for some participants, community and health care workers' attitudes towards disability were not reported to influence health care accessibility in this study. CONCLUSIONS: This study finds that health care access for people with disabilities in rural Malawi is hindered by closely interconnected financial, practical and social barriers. There is a clear requirement for policy makers to consider the challenges identified here, and in similar studies, and to address them through improved social security systems and health system infrastructure, including outreach services, in a drive for equitable health care access and provision.

Direct costs of illness of patients with chronic cough in rural Malawi-Experiences from Dowa and Ntchisi districts.

INTRODUCTION: Chronic cough is a distressing symptom and a common reason for people to seek health care services. It is a symptom that can indicate underlying tuberculosis (TB) and/or chronic airways diseases (CAD) including asthma, chronic obstructive pulmonary disease (COPD) and bronchiectasis. In developing countries including Malawi, provision of diagnostic services and clinical management of CAD is rudimentary, so it is thought that patients make costly and unyielding repeated care-seeking visits. There is, however, a lack of information on cost of illness, both direct and indirect, to patients with chronic cough symptom. Such data are needed to inform policy-makers in making decisions on allocating resources for designing and developing the relevant health care services to address universal coverage programmes for CAD. This paper therefore explores health seeking costs associated with chronic cough and explores information on usage of the coping mechanisms which indicate financial hardship, such as borrowing and selling household assets. METHODS: This economic study was nested within a community-based, population-proportional cross-sectional survey of 15,795 individuals aged 15 years and above, in Dowa and Ntchisi districts. The study sought to identify individuals with symptoms of chronic airways disease whose health records documented at least one of the following diagnoses within the previous year: TB, Asthma, COPD, Bronchitis and Lower Respiratory Tract Infection (LRTI). We interviewed these chronic coughers to collect information on socioeconomic and socio-demographic characteristics, health care utilization, and associated costs of care in 2015. We also collected information on how they funded their health seeking costs. RESULTS: We identified 608 chronic coughers who reported costs in relation to their latest confirmed diagnosis in their hand-held health record. The mean care-seeking cost per patient was US$ 3.9 (95% CI: 3.00-5.03); 2.3 times the average per capita expenditure on health of US$ 1.69. The largest costs were due to transport (US$ 1.4), followed by drugs (US$ 1.3). The costs of non-medical inputs (US$ 2.09) was considerable (52.3%). Nearly a quarter (24.4%) of all the patients reportedly borrowed or/and sold assets/property to finance their healthcare. CCs with COPD and LRTI had 85.6% and 62.0% lower chance of incurring any costs compared with the TB patients and any patients with comorbidity had 2.9 times higher chance to incur any costs than the patients with single disease. COPD, Bronchitis and LRTI patients had 123.9%, 211.4% and 87.9% lower costs than the patients with TB. The patients with comorbidity incurred 53.9% higher costs than those with single disease. CONCLUSIONS: The costs of healthcare per chronic cougher was mainly influenced by the transport and drugs costs. Types of diseases and comorbidity led to significantly different chances of incurring costs as well as difference in magnitude of costs. The costs appeared to be unaffordable for many patients.

Knowledge, beliefs, and perceptions of tuberculosis among community members in Ntcheu district, Malawi.

INTRODUCTION: The global burden of tuberculosis (TB) remains significantly high, with overreliance on biomedical interventions and inadequate exploration of the socioeconomic and cultural context of the infected population. A desired reduction in disease burden can be enhanced through a broader theoretical understanding of people's health beliefs and concerns about TB. In this qualitative study, we explore the knowledge, beliefs, and perceptions of community members and people diagnosed with TB toward TB in Ntcheu district, Malawi. METHODS: Using a qualitative phenomenological study design, data were obtained from eight focus-group discussions and 16 individual in-depth interviews. The community's experiences and perceptions of TB were captured without using any preconceived framework. Adult participants who had had or never had a diagnosis of TB were purposively selected by sex and age and enrolled for the study. Discussions and individual interviews lasting about 60 minutes each were audiotaped, transcribed, and translated into English and analyzed using MaxQDA 10 software for qualitative analysis. RESULTS: Most participants believed that TB was curable and would go for diagnosis if they had symptoms suggestive of the disease. However, based on their beliefs, individuals expressed some apprehension about the spread of TB and the social implications of being diagnosed with the disease. This perception affected participants' responses about seeking diagnosis and treatment. CONCLUSION: A supportive and collective approach consisting of a combination of mass media, interactive communication campaigns, emphasizing TB symptoms, transmission, and stigma could be useful in addressing barriers to early diagnosis and care-seeking behavior.

Community prevalence of chronic respiratory symptoms in rural Malawi: Implications for policy.

BACKGROUND: No community prevalence studies have been done on chronic respiratory symptoms of cough, wheezing and shortness of breath in adult rural populations in Malawi. Case detection rates of tuberculosis (TB) and chronic airways disease are low in resource-poor primary health care facilities. OBJECTIVE: To understand the prevalence of chronic respiratory symptoms and recorded diagnoses of TB in rural Malawian adults in order to improve case detection and management of these diseases. METHODS: A population proportional, cross-sectional study was conducted to determine the proportion of the population with chronic respiratory symptoms that had a diagnosis of tuberculosis or chronic airways disease in two rural communities in Malawi. Households were randomly selected using Google Earth Pro software. Smart phones loaded with Open Data Kit Essential software were used for data collection. Interviews were conducted with 15795 people aged 15 years and above to enquire about symptoms of chronic cough, wheeze and shortness of breath. RESULTS: Overall 3554 (22.5%) participants reported at least one of these respiratory symptoms. Cough was reported by 2933, of whom 1623 (55.3%) reported cough only and 1310 (44.7%) combined with wheeze and/or shortness of breath. Only 4.6% (164/3554) of participants with chronic respiratory symptoms had one or more of the following diagnoses in their health passports (patient held medical records): TB, asthma, bronchitis and chronic obstructive pulmonary disease). CONCLUSIONS: The high prevalence of chronic respiratory symptoms coupled with limited recorded diagnoses in patient-held medical records in these rural communities suggests a high chronic respiratory disease burden and unmet health need.

Knowledge and perception about tuberculosis among children attending primary school in Ntcheu District, Malawi.

BACKGROUND: Knowledge and perceptions about tuberculosis (TB) can influence care-seeking behavior and adherence to treatment. Previous studies in Malawi were conducted to assess knowledge and attitudes regarding TB in adults, with limited data on knowledge in children. OBJECTIVES: This study assessed knowledge and perceptions about TB in children aged 10-14 years attending primary school in Ntcheu District, Malawi. DESIGN: A cross-sectional study was conducted in four primary schools in Ntcheu District. Data on knowledge and perception of TB were collected using a structured questionnaire. Pearson chi-square test was used to determine the association between socioeconomic factors and TB knowledge and perception. A P<0.05 was considered significant. RESULTS: The study found that the learners had high knowledge regarding the cause, spread, and TB preventive measures. Almost 90% of learners knew that TB is caused by a germ, however, a lower proportion knew about TB symptoms ie, night sweats (49%) and enlarged cervical lymph nodes (40%). We found that 68% of learners did not know the duration of anti-TB treatment. No association was found between age, learners' grade, and knowledge (P>0.05). CONCLUSION: Lack of knowledge regarding TB and gaps identified, may be due to a deficiency in the content of the school curriculum or the availability of information, education, and communication materials. This is the first study to report on knowledge and perceptions of TB among primary school learners in Malawi. These results will inform the development of relevant information, education, and communication materials to enhance awareness about TB among school going children.

A household perspective on access to health care in the context of HIV and disability: a qualitative case study from Malawi.

BACKGROUND: Equitable access to health care is a challenge in many low-income countries. The most vulnerable segments of any population face increased challenges, as their vulnerability amplifies problems of the general population. This implies a heavy burden on informal care-givers in their immediate and extended households. However, research falls short of explaining the particular challenges experienced by these individuals and households. To build an evidence base from the ground, we present a single case study to explore and understand the individual experience, to honour what is distinctive about the story, but also to use the individual story to raise questions about the larger context. METHODS: We use a single qualitative case study approach to provide an in-depth, contextual and household perspective on barriers, facilitators, and consequences of care provided to persons with disability and HIV. RESULTS: The results from this study emphasise the burden that caring for an HIV positive and disabled family member places on an already impoverished household, and the need for support, not just for the HIV positive and disabled person, but for the entire household. CONCLUSIONS: Disability and HIV do not only affect the individual, but the whole household, immediate and extended. It is crucial to consider the interconnectedness of the challenges faced by an individual and a household. Issues of health (physical and mental), disability, employment, education, infrastructure (transport/terrain) and poverty are all related and interconnected, and should be addressed as a whole in order to secure equity in health.

Factors Influencing Delayed Health Care Seeking Among Pulmonary Tuberculosis Suspects in Rural Communities in Ntcheu District, Malawi.

Delayed diagnosis and treatment of tuberculosis (TB) among individuals suspected of having TB may lead to continued transmission of Mycobacterium tuberculosis in communities, higher mortality rates, and increase in government health expenditure because of prolonged illness due to late diagnosis and treatment initiation. The study explored factors leading to delayed health care seeking among individuals living in Ntcheu District, Malawi. Two key informant interviews, 16 in-depth interviews, and three focus group discussions were conducted. Participants were aged 18 years and older and never had TB. Data were analyzed using content analysis and factors were identified: inadequate knowledge about cause and transmission of TB, low self-awareness of personal risk to TB, cultural and traditional beliefs about sources of TB, stigma, and strong belief in witchcraft as a cause of illness. The TB Control Program needs to invest in social mobilization and education of communities to mitigate early health care seeking.

Informal Health Provider and Practical Approach to Lung Health interventions to improve the detection of chronic airways disease and tuberculosis at primary care level in Malawi: study protocol for a randomised controlled trial.

BACKGROUND: In developing countries like Malawi, further investigation is rare after patients with chronic cough test negative for tuberculosis. Chronic airways disease has presentations that overlap with tuberculosis. However, chronic airways disease is often unrecognised due to a lack of diagnostic services. Within developing countries, referral systems at primary health care level are weak and patients turn to unskilled informal health providers to seek health care. Delayed diagnosis and treatment of these diseases facilitates increased severity and tuberculosis transmission. The World Health Organisation developed the Practical Approach to Lung Health strategy which has been shown to improve the management of both tuberculosis and chronic airways disease. The guidelines address the need for integrated guidelines for tuberculosis and chronic airways disease. Engaging with informal health providers has been shown to be effective in improving health services uptake. However, it is not known whether engaging community informal health providers would have a positive impact in the implementation of the Practical Approach to Lung Health strategy. We will use a cluster randomised controlled trial to determine the effect of using the two interventions to improve case detection and treatment of patients with tuberculosis and chronic airways disease. METHODS: A three-arm cluster randomised trial design will be used. A primary health centre catchment population will form a cluster, which will be randomly allocated to one of the arms. The first arm personnel will receive the Practical Approach to Lung Health strategy intervention. In addition to this strategy, the second arm personnel will receive training of informal health providers. The third arm is the control. The effect of interventions will be evaluated by community surveys. Data regarding the diagnosis and management of chronic cough will be gathered from primary health centres. DISCUSSION: This trial seeks to determine the effect of Informal Health Provider and Practical Approach to Lung Health interventions on the detection and management of chronic airways disease and tuberculosis at primary care level in Malawi. TRIAL REGISTRATION: The unique identification number for the registry is PACTR201411000910192--21 November 2014.

The association between multiple sources of information and risk perceptions of tuberculosis, Ntcheu district, Malawi.

BACKGROUND: Tuberculosis (TB) is one of the main causes of death in developing countries. Awareness and perception of risk of TB could influence early detection, diagnosis and care seeking at treatment centers. However, perceptions about TB are influenced by sources of information. AIM: This study aimed to determine the association between multiple sources of information, and perceptions of risk of TB among adults aged 18-49 years. METHODS: A cross-sectional study was conducted in Ntcheu district in Malawi. A total of 121 adults were sampled in a three-stage simple random sampling technique. Data were collected using a structured questionnaire. Perceptions of risk were measured using specific statements that reflected common myths and misconceptions. Low risk perception implied a person having strong belief in myths and misconceptions about TB and high risk perception meant a person having no belief in myths or misconceptions and demonstrated understanding of the disease. RESULTS: Females were more likely to have low risk perceptions about TB compared to males (67.7% vs. 32.5%, p = 0.01). The higher the household asset index the more likely an individual had higher risk perceptions about TB (p = 0.006). The perception of risk of TB was associated with sources of information (p = 0.03). Use of both interpersonal communication and mass media was 2.8 times more likely to be associated with increased perception of risk of TB (Odds Ratio [OR] = 2.8; 95% Confidence interva1[CI]: 3.1-15. 6; p = 0.01). After adjusting for sex and asset ownership, use of interpersonal communication and mass media were more likely to be associated with higher perception of risk of TB (OR, 2.0; 95% CI: 1.65-10.72; p = 0.003) compared with interpersonal communication only (OR 1.6, 95%; CI: 1.13-8.98, p = 0.027). CONCLUSION: The study found that there was association between multiple sources of information, and higher perceptions of risk of TB among adults aged 18-49 years.

Drug resistance of Mycobacterium tuberculosis in Malawi: a cross-sectional survey.

OBJECTIVE: To document the prevalence of multidrug resistance among people newly diagnosed with - and those retreated for - tuberculosis in Malawi. METHODS: We conducted a nationally representative survey of people with sputum-smear-positive tuberculosis between 2010 and 2011. For all consenting participants, we collected demographic and clinical data, two sputum samples and tested for human immunodeficiency virus (HIV).The samples underwent resistance testing at the Central Reference Laboratory in Lilongwe, Malawi. All Mycobacterium tuberculosis isolates found to be multidrug-resistant were retested for resistance to first-line drugs - and tested for resistance to second-line drugs - at a Supranational Tuberculosis Reference Laboratory in South Africa. FINDINGS: Overall, M. tuberculosis was isolated from 1777 (83.8%) of the 2120 smear-positive tuberculosis patients. Multidrug resistance was identified in five (0.4%) of 1196 isolates from new cases and 28 (4.8%) of 581 isolates from people undergoing retreatment. Of the 31 isolates from retreatment cases who had previously failed treatment, nine (29.0%) showed multidrug resistance. Although resistance to second-line drugs was found, no cases of extensive drug-resistant tuberculosis were detected. HIV testing of people from whom M. tuberculosis isolates were obtained showed that 577 (48.2%) of people newly diagnosed and 386 (66.4%) of people undergoing retreatment were positive. CONCLUSION: The prevalence of multidrug resistance among people with smear-positive tuberculosis was low for sub-Saharan Africa - probably reflecting the strength of Malawi's tuberculosis control programme. The relatively high prevalence of such resistance observed among those with previous treatment failure may highlight a need for a change in the national policy for retreating this subgroup of people with tuberculosis.

Primary Health Care in rural Malawi - a qualitative assessment exploring the relevance of the community-directed interventions approach.

BACKGROUND: Primary Health Care (PHC) is a strategy endorsed for attaining equitable access to basic health care including treatment and prevention of endemic diseases. Thirty four years later, its implementation remains sub-optimal in most Sub-Saharan African countries that access to health interventions is still a major challenge for a large proportion of the rural population. Community-directed treatment with ivermectin (CDTi) and community-directed interventions (CDI) are participatory approaches to strengthen health care at community level. Both approaches are based on values and principles associated with PHC. The CDI approach has successfully been used to improve the delivery of interventions in areas that have previously used CDTi. However, little is known about the added value of community participation in areas without prior experience with CDTi. This study aimed at assessing PHC in two rural Malawian districts without CDTi experience with a view to explore the relevance of the CDI approach. We examined health service providers' and beneficiaries' perceptions on existing PHC practices, and their perspectives on official priorities and strategies to strengthen PHC. METHODS: We conducted 27 key informant interviews with health officials and partners at national, district and health centre levels; 32 focus group discussions with community members and in-depth interviews with 32 community members and 32 community leaders. Additionally, official PHC related documents were reviewed. RESULTS: The findings show that there is a functional PHC system in place in the two study districts, though its implementation is faced with various challenges related to accessibility of services and shortage of resources. Health service providers and consumers shared perceptions on the importance of intensifying community participation to strengthen PHC, particularly within the areas of provision of insecticide treated bed nets, home case management for malaria, management of diarrhoeal diseases, treatment of schistosomiasis and provision of food supplements against malnutrition. CONCLUSION: Our study indicates that intensified community participation based on the CDI approach can be considered as a realistic means to increase accessibility of certain vital interventions at community level.

Efficacy and safety of two dosages of cotrimoxazole as preventive treatment for HIV-infected Malawian adults with new smear-positive tuberculosis.

OBJECTIVE: To assess the efficacy and safety of two different dosages of cotrimoxazole (CTX) in prophylaxis in HIV-positive new smear-positive pulmonary tuberculosis (TB) patients in Blantyre, Malawi. METHOD: Randomized, double-blind trial using 480 and 960 mg of CTX given to new TB patients, who were followed up until the end of the tuberculosis treatment. The primary outcome was survival. The outcome in the two groups was also compared with an unselected cohort of similar patients registered in Zomba, Malawi in 1995 and new smear-positive patients registered in the National Tuberculosis Programme in 1999. The secondary outcome was the occurrence of (opportunistic) events, especially bacterial pneumonia. RESULTS: There were no statistically significant differences in mortality and bacterial pneumonia between the groups receiving the two different dosages. The case fatality rate at the end of the tuberculosis treatment was 15.4% in the 480 mg group and 14.0% in the 960 mg group. This was lower than the case fatality rate in the Zomba cohort (19.2%, P = 0.10) and lower than the case fatality rate in the national programme (21.0%, P < 0.001). CTX was well tolerated. Compliance was fair. CONCLUSIONS: CTX prophylaxis may have a beneficial effect on mortality and morbidity in HIV-infected smear-positive tuberculosis patients in Malawi. The efficacy of both dosages is not significantly different. The intervention is cheap and easy to implement. These results would support implementation of CTX in this patient group until better strategies are available or evidence is convincingly presented to suggest that its benefit is marginal.

Non-typhoidal salmonella (NTS) bacteraemia in Malawian adults: a severe, recrudescent, HIV-associated illness.

Non-typhoidal salmonella (NTS) bacteraemia is a common, recurrent illness in HIV-infected African adults. We aimed to describe the presentation and outcome of NTS bacteraemia, the pattern of recurrence, and to determine whether recurrence results from re-infection or recrudescence. 100 consecutive adult inpatients with NTS bacteraemia in Blantyre, Malawi were treated with chloramphenicol (500mg qid for 14 days). Survivors were prospectively followed to detect bacteraemic recurrence. Index and recurrent isolates were typed by antibiogram, pulsed field gel electrophoresis and plasmid analysis to distinguish recrudescence from re-infection. Inpatient mortality was 47%, and 1-year mortality was 77%. 77/78 cases were HIV positive. Anaemia was associated with inpatient death, and several features of AIDS were associated with poor outpatient survival. Among survivors, 43% (19/44) had a first recurrence of NTS bacteraemia at 23-186 days. Among these, 26% (5/19) developed multiple recurrences up to 245 days. No recurrence was seen after 245 days, despite follow-up for up to 609 days (median 214). Suppurative infections were not found at presentation, and were only seen twice at recurrence. Index and recurrent paired isolates were identical by phenotyping and genotyping, consistent with recrudescence, rather than re-infection. NTS bacteraemia has a high mortality (47%) and recurrence rate (43%) in HIV-infected African adults. Recurrence is caused by recrudescence rather than re-infection. Since focal infections were rarely found, recrudescence may often be a consequence of intracellular tissue sequestration. There is an urgent need for improved primary treatment and secondary prophylaxis in Africa.

Non-typhoidal salmonella bacteraemia among HIV-infected Malawian adults: high mortality and frequent recrudescence.

OBJECTIVE: Non-typhoidal salmonella (NTS) bacteraemia is a common, recurrent illness in HIV-infected African adults. We aimed to describe the presentation and outcome of NTS bacteraemia, the pattern of recurrence, and to determine whether recurrence results from re-infection or recrudescence. DESIGN: One hundred consecutive adult inpatients with NTS bacteraemia in Blantyre, Malawi, were treated with chloramphenicol. Survivors were prospectively followed to detect bacteraemic recurrence. METHODS: Index and recurrent isolates were typed by antibiogram, pulsed-field gel electrophoresis and plasmid analysis to distinguish recrudescence from re-infection. RESULTS: Inpatient mortality was 47%, and 1-year mortality was 77%. A total of 77 out of 78 cases were HIV positive. Anaemia was associated with inpatient death, and several features of AIDS were associated with poor outpatient survival. Among survivors, 43% (19/44) had a first recurrence of NTS bacteraemia at 23-186 days. Among these, 26% (5/19) developed multiple recurrences up to 245 days. No recurrence was seen after 245 days, despite follow-up for up to 609 days (median 214). Suppurative infections were not found at presentation, and were only seen twice at recurrence. Index and recurrent paired isolates were identical by phenotyping and genotyping, consistent with recrudescence, rather than re-infection. CONCLUSION: NTS bacteraemia has a high mortality (47%) and recurrence (43%) rate in HIV-infected African adults. Recurrence is caused by recrudescence rather than re-infection. As focal infections were rarely found, recrudescence may often be a consequence of intracellular tissue sequestration. There is an urgent need for improved primary treatment and secondary prophylaxis in Africa.