The effects of stigma and social support on the health-related quality of life of people with drug resistance tuberculosis in Lagos, Nigeria

There is a renewed interest in measuring the health-related quality of life of people with long-standing diseases because it measures the effect of diseases on regular activities and functions. This concept has been studied among people with tuberculosis. Several studies from Nigeria have assessed the factors associated with the health-related quality of life among people with tuberculosis, but little is known about the effect of stigma and social support on the health-related quality of life of people with tuberculosis in Lagos, Nigeria. We conducted a study among people receiving treatment for resistant tuberculosis in Lagos, Nigeria, and assessed the effect of stigma and social support on their health-related quality of life. Our study suggested that people with resistant tuberculosis's overall health-related quality of life was generally poor. However, the younger participants, males, those with higher education, and who were HIV-negative, had higher health-related quality of life than their counterparts. The greater the stigma experienced by our participants, the lower the health-related quality of life recorded. Conversely, the more social support received, the higher the health-related quality of life. In conclusion, our study suggested that strategies to reduce stigma and strengthen social support are needed to improve the health-related quality of life of people with resistant tuberculosis in Lagos, Nigeria.

Health-related quality of life (HRQoL) assesses the impact of disease and its treatment on the person’s daily perception of physical, mental and social well-being [1]. It is an essential concept because people with chronic diseases often prioritise their cognitive and social well-being the same way they do their physical health [2]. Patients are not concerned about bacteriological cures alone; their well-being, functional capacity, and illness experiences are equally important [3]. It is an important patient-reported outcome measure as clinicians could underestimate the impacts of disease and treatment on HRQoL [4].

HRQoL applies a broader concept of health status measurement beyond the usual mortality and morbidity indicators. It has become an area of interest to stakeholders because it measures the effect of diseases and outcomes on regular activities and functions [5]. Tuberculosis (TB) is one of the diseases that can adversely undermine the HRQoL [6] and can be influenced by several patient, disease and treatment-related factors in people with TB (PWTB) because of the multi-drug therapy, side effects of medications, social impacts, social support, social stigma and possible complications [7, 8]. Generally, HRQoL is lower in PWTB compared with healthy populations [9, 10] but higher among people with drug-sensitive TB compared with their counterparts with drug-resistant TB (DR-TB) due to a complex interaction between physical illness, psychological consequences of the disease and the financial burden [11].

Stigma is a global public health challenge and a significant factor affecting TB control globally [12]. Crucially, it is a barrier to achieving the World Health Organization (WHO) goal of ending TB by 2050 [12]. Deep-rooted myths, wrong perceptions and beliefs about TB and those affected are factors responsible for stigma at the family and community level [13, 14]. Goffman described stigma as an “attribute that is deeply discrediting that demeans people from a whole and usual person to a tainted, discounted one” [15]. Stigma weakens TB response and damages the lives and health of those who experience it [16]. The effects of TB stigma are far-reaching. Unfortunately, necessary attention has not been given to international TB prevention and control [17].

Social support is the perceived or actual care received from family, friends, and significant others [18]. It buffers adverse life events and improves TB treatment outcomes [19]. When adequate, social support improves self-confidence and life fulfilment, reducing psychological distress [20]. There is an intricate relationship between TB stigma, social support, and HRQoL. Studies have shown that people with TB who experienced a lower level of stigma had good HRQoL; however, in contrast, social support has the opposite effect [21, 22]. There is, however, a lack of studies that accessed which factor between stigma and social support made a significant contribution to predicting HRQoL in people with TB.

Nigeria is classified as a high-burden TB, TB/HIV and drug-resistant TB (DR-TB) country by the WHO, with an estimated incidence rate of 219 per 100,000 population [19]. In 2022, about 43% of the 408,500 DR-TB cases were enrolled globally. Nigeria and nine other countries (eight in Asia and one in Europe) accounted for 70% of the treatment initiation gap [23]. Lagos is a cosmopolitan state with an estimated population of about 21 million, accounts for 8.4% of the national TB burden and contributes 9.4% of the country’s total TB notification [24]. As the country's commercial nerve centre, Lagos State has unique socio-cultural dynamics because of ethnic diversity. The health system challenges and the numerous slums (over 100) in the state reflect its mega-city status [25]. It was the first state to decentralise DR-TB treatment to the community because of its high population density and poor physical access to DR-TB treatment centres.

TB is a stigmatised disease and a formidable challenge to global TB control [12]. A high prevalence of TB stigma has been reported in Nigeria and other high-burdened TB countries [26‐28]. HRQoL has been studied among people with drug-sensitive and drug-resistant TB in Nigeria. These studies focused on the effects of TB treatment on HRQoL and the socio-demographic and clinical factors associated with HRQoL [29‐32]. There is a need to assess the impact of TB stigma and social support on the HRQoL of PWTB in Nigeria because of the burden of TB and the high prevalence of TB stigma in the country. Unfortunately, there is little evidence about the effect of stigma and social support on HRQoL among DR-TB patients receiving treatment. This present study assessed the effect of TB stigma and social support on the HRQoL and which factor contributed more to predicting HRQoL among people living with DR-TB in Lagos, Nigeria. We envisage that our findings will contribute to the call for integrated patient-centred care among people with DR-TB, which is one of the pillars of the End TB Strategy.

Convenient sampling was used. Eligible participants willing to participate in the study were consecutively recruited. Enrollment in the study was done during the outpatient clinic. All study participants signed a written informed consent form before the research assistants administered the questionnaire.

Using the sample size formula for a finite population, the TB stigma prevalence rate of 18%, [20] a non-response rate of 15% and the average population of 625 people with DR-TB on treatment in Lagos (from the records of the Lagos State TB and Leprosy control program), a sample size of 200 was obtained. Two hundred and three participants were recruited for the study.

This study assessed the effects of TB stigma and social support on HRQoL among people with DR-TB on treatment in Lagos, Nigeria. In this study, the overall HRQoL score was poor. The physical and emotional subscales had the lowest HRQoL score, while the spiritual subscale had the highest score. Age, gender, marital status, educational status and HIV status were factors associated with the overall HRQoL. The duration of treatment was not associated with HRQoL. Stigma was negatively associated with HRQoL, while social support was positively associated with HRQoL. Social support contributed more to predicting HRQoL than stigma.

The overall low HRQoL score of participants in this study was similar to cross-sectional studies from China, Eritrea and India, where the HRQoL was significantly reduced among people with DR-TB [11, 39, 40]. Contrary to our findings, a study from Nigeria reported high HRQoL among people with DR-TB [31]. However, the above report did not state the duration of treatment of participants. Furthermore, different tools used to measure HRQoL and sampling variation may be responsible for this finding. People with DR-TB have difficulties related to their family life, social stigmatisation and financial hardship due to longer treatment duration, toxic medications, frequent adverse effects and associated poorer outcomes, consequently impairing their HRQoL [41]. The poor socio-economic conditions of people with DR-TB, the severity of the disease, the financial burden of the disease, and inadequate access to DR-TB healthcare services in Nigeria may also be responsible for our findings [11, 42].

Our study showed that the HRQoL score was highest in the spiritual subscale. A systemic review showed a positive association between spirituality/religiousness and the quality of life of adults [43]. Nigerians are very religious, and over 99% identify with one religion. The cultural settings of the ethnic groups in the country also shape people’s belief systems [44]. Most individuals turn to their faith when faced with health challenges, which sometimes could be detrimental to their health. Understanding how religiousness influences HRQoL could help develop patient-centred care in culturally diverse settings like Nigeria.

The effects of DR-TB treatment on HRQoL are variable. According to a study from Yemen, DR-TB treatment influenced the increase in HRQoL scores of people with DR-TB in the late phases of treatment [10]. Contrary to this, our study shows that the HRQoL did not increase with the duration of treatment. A follow-up study from Pakistan showed a minimal clinically insignificant improvement in the HRQoL score after one year of DR-TB treatment [1]. The reason for this is unknown; the variations in the different study populations' cultural, socio-economic and social support systems may be contributory factors. The physical, emotional, and functional domain HRQoL scores in this study were poor, irrespective of the duration of treatment, similar to the findings from India [40].

In the assessment of the HRQoL scores among participants, we found that age had a significant effect on the overall HRQoL. The overall HRQoL was higher among the younger than the older age group. This conforms with previous studies from China, India and Nigeria [39, 45, 46]. The effects of advancing age, economic difficulties, poor mobility, and comorbidities, common among older people, could be responsible for this finding [47]. The younger participants were more likely to have better financial resources to access care, have good social relationships, have a better understanding of the disease process and have better self-esteem than the older participants [46]. Males had a higher score in the overall HRQoL than females in our study, consistent with findings from India [48, 49]. The patriarchal nature of Nigerians causes gender inequalities, which made the females the weaker sex, marginalised, discriminated against, and economically dependent on men and the cultural perceptions that relegate women to the background, without any opinion of their own, all of which potentially cause poor expression of views and feelings, may be responsible for the poorer HRQoL among women [46, 50]. Similar to our findings, studies have opined that a higher HRQoL was found among people with DR-TB who had a higher education compared to their counterparts [39, 51]. Education enables people to be well-informed, have better social connections, and understand the disease process, invariably improving their HRQoL [16]. Comorbidity has a powerful influence on HRQoL [39]. HIV-positive participants had poorer HRQoL than HIV-negative participants in this study, consistent with findings from other studies [52, 53]. TB and HIV co-infection are associated with unique therapeutic challenges and often pose a burden on the health system. Both diseases combine to impose physical and mental distress, leading to poor disease outcomes and poorer HRQoL [53].

One of the most critical factors affecting HRQoL among people with DR-TB is stigma. In our study, stigma alone explained more than a third of the variance in HRQoL. In agreement with other studies from China, India, Indonesia and Singapore [21, 22, 54, 55], our analysis shows that stigma was negatively associated with HRQoL. A systematic review from South Africa evaluating HRQoL among PWTB suggested that psycho-social burden such as stigma and social isolation impacts HRQoL more than clinical symptoms [56]. TB is a stigmatised disease because of fear of infection, its association with HIV disease and traditional myths [17]. TB stigma predisposes to depression, low self-efficacy, anxiety and ultimately poor HRQoL [57]. The prevention of TB stigma is crucial to global TB control because of its adverse effects on health-seeking behaviour and disease outcomes [58]. TB stigma can occur in the family, community, health facility and organisation. It may result in rejection, social exclusion, loss of employment, divorce and rejection of marriage proposals. This discrimination may result in mental distress and poor HRQoL [59]. Contrary to general belief, stigmatisation of people with TB is not limited to developing countries; it has also been reported in other low-burden TB countries [60].

There is a lack of studies evaluating interventions to reduce TB stigma despite its global importance. The public, healthcare workers managing TB patients, and other healthcare workers are possible sources of TB stigma. Interventions are optimised when simultaneously targeted towards more than one key population [61]. Nigeria can leverage TB stigma reduction interventions such as public awareness campaigns, stakeholder consultations, counselling, and peer support groups in high-burden settings [62]. Researching which intervention works best in a culturally diverse setting like Lagos could be the starting point.

For decades, social support has been recognised as an essential element in the control of TB [63]. In this study, social support was positively associated with the HRQoL of people with DR-TB, consistent with reports from India and Zimbabwe [40, 64]. Patients with high social support are more likely to initiate diagnosis and treatment early [65], comply with treatment regimens [56], and experience less stigma [56, 57], ultimately leading to better HRQoL [66]. Social support includes support from family, friends, the community, and the health institution. When these are inconsistent, it is suggestive of societal stigma [64]. Institutional support from implementing partners and government agencies [31] and support in the workplace from healthcare providers and families positively influence the HRQoL of people with DR-TB [40]. Social support and TB stigma had opposite effects on HRQoL. However, social support impacted the HRQoL more than stigma in this study, similar to the findings from Pakistan [67]. Many studies have documented the effects of stigma and social support on HRQoL among people with TB; there is a need for further studies to ascertain which of the factors have a higher impact on HRQoL.

This study has some limitations. First, a causal relationship between TB stigma, social support, and HRQoL cannot be drawn from our research, as it is a cross-sectional study. Second, there is a possibility of having a response and ascertainment bias in the study because the measurements were self-reported.

This current study has established that the HRQoL of people with DR-TB in Lagos, Nigeria, is poor. Improvement in social support and reduction in stigma experienced by people with DR-TB will improve their HRQoL. The social support structure in the DR-TB programme needs to be evaluated and strengthened. There is also a need to encourage social support at the family and community levels. In contrast, policies that will reduce discrimination and stigma against people with DR-TB in the community, among healthcare providers and public health agencies, are urgently needed. Further studies are required to establish these associations, assess the changes in HRQoL over time and evaluate the impact of specific stigma-reduction interventions. Addressing the issue of stigma may facilitate the achievement of the prohibition of stigma and discrimination against people with TB, which is one of the thrusts of the End TB strategies.