Roadblocks and resilience: A qualitative study of the impact of pediatric tuberculosis on Tanzanian households and solutions from caregivers

Guex, Kristen Petros de; Augustino, Domitila; Mejan, Paulo; Gadiye, Rehema; Massong, Cornel; Lukumay, Saning'o; Msoka, Perry; Sariko, Margaretha; Kimathi, Dafroza; Vinnard, Christopher; Xie, Yingda L.; Mmbaga, Blandina T.; Pfaeffle, Herman; Geba, Maria; Heysell, Scott K; Mduma, Estomih; Thomas, Tania A

doi:10.1080/17441692.2023.2196569

Cited by 2 publications

(1 citation statement)

References 38 publications

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“…Furthermore, it seeks to address the importance of studying these factors in the prevention and treatment of TB and related infectious diseases, which have significant implications for public health, socio-economic factors, and healthcare systems. The study highlights the crucial role of social support for individuals affected by TB, including those currently battling the disease and those who have recovered but still face financial, moral, or attitudinal challenges that impact their overall well-being and life satisfaction ( 77 , 78 ). The significance of social support extends to all aspects of life, emphasizing its importance in ensuring the holistic well-being of individuals affected by TB.…”

Section: Discussionmentioning

confidence: 99%

Perceived access to social support during and after TB treatment in Mbeya and Songwe regions, Tanzania: perspectives from TB patients and survivors set against health care providers

Kilima,

Mubyazi,

Moolla

et al. 2024

Front. Health Serv.

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IntroductionPulmonary tuberculosis (PTB) remains a life-threatening disease in Tanzania, with negative physical, financial, economic and psychosocial consequences to individuals and the society. It mainly lowers the quality of life of patients, survivors and their families, especially those in the poorest and socially deprived categories.ObjectivesTo report and discuss a qualitative study that assessed the nature of social support desired and received by PTB patients and survivors. Participants were given a chance to share their experiences and their perceptions on whether the social support they desired had an impact on their treatment-seeking behaviour and treatment adherence.MethodsFace-to-face interviews were conducted with the three aforementioned groups, purposively selected at a TB clinic between October 2020 and March 2021. The questions covered topics related to the types of social support desired and the sources of support during and after treatment, if any. Interviews were concluded until no new information was obtained. Data analysis was facilitated using NVivo 12 software.ResultsParticipants pointed out a need for psychosocial, financial, and material support during and after treatment. However, they sometimes miss support from family/household members or the rest of the community. Because of this experience, they lived with difficulties, facing hardships when required to pay out of pocket for transport during the care-seeking. Survivors testified experience of a denial of support by even their close relatives who regarded them as no longer needing it after recovering. Patients and survivors also reported experience of social isolation as they were believed able to transmit PTB infections. Limited psychological support at the contacted TB clinics was another experience reported. TB clinic staff's experiences confirmed almost all the experiences shared by their clients. With limited support, resilience and self-care were identified as key mechanisms for coping.ConclusionComplete recovery from PTB is possible, but reverting to a normal life is difficult without social support. Policies and programs need to increase opportunities for social support for TB patients and survivors. Doing so is likely to improve TB-related treatment, care-seeking practices, and adherence.

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Section: Discussionmentioning

confidence: 99%

Perceived access to social support during and after TB treatment in Mbeya and Songwe regions, Tanzania: perspectives from TB patients and survivors set against health care providers

Kilima,

Mubyazi,

Moolla

et al. 2024

Front. Health Serv.

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Social Isolation, Social Exclusion and Access to Resources: Mapping the Gendered Impact of TB-related Stigma Among TB Patients in Eastern Cape Province, South Africa

Medina-Marino,

de Vos,

Daniels

2024

Preprint

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Background Stigma and isolation among people living with tuberculosis (PLWTB) is well documented. Poorly understood are the gendered pathways by which TB-related stigma results in isolation or impacts access to resources during one’s illness-to-health journey. Methods We interviewed PLWTB receiving treatment at government clinics in Buffalo City Metro, South Africa. Semi-structured guides explored: TB symptom experiences; access-to-care; treatment motivation; key supporters; and access to mental and tangible resources (MTRs) during illness. Open coding was done inductively, with MTR domains informed by the Network-Individual-Resource Model. Findings were analyzed through a cyclic iterative and deductive process using social isolation and exclusion as interpretive lenses. Memos and pathway mapping examined gendered differences in stigma, isolation, and access to networked MTRs. Results One-hundred forty-two PLWTB (Men = 93; Women = 61) were interviewed. PLWTB described pervasive TB stigma and isolation. Women described self-isolating in response to enacted and anticipated stigma. Men described active exclusion by friends and family. Women’s maintenance of familial ties facilitated access to MTRs while ill. Men’s systematic exclusion reduced their agency to access resources. Men and women described regaining of physical strength and recovery of social networks, but also the sustained post-treatment stigma impact. Conclusions We identified gendered pathways through which TB stigma and isolation affect access to MTRs. For women, stigma led to social isolation, but familial networks maintained access to MTRs, fostering resilience. Men experienced social exclusion, reduced agency to access MTRs, and increased vulnerability during illness. Findings can guide gender-responsive interventions to reduce the impact of TB stigma on health outcomes.

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Roadblocks and resilience: A qualitative study of the impact of pediatric tuberculosis on Tanzanian households and solutions from caregivers

Cited by 2 publications

References 38 publications

Perceived access to social support during and after TB treatment in Mbeya and Songwe regions, Tanzania: perspectives from TB patients and survivors set against health care providers

Perceived access to social support during and after TB treatment in Mbeya and Songwe regions, Tanzania: perspectives from TB patients and survivors set against health care providers

Social Isolation, Social Exclusion and Access to Resources: Mapping the Gendered Impact of TB-related Stigma Among TB Patients in Eastern Cape Province, South Africa

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