Kilima Stella P, Mubyazi Godfrey M, Moolla Aneesa, Ntinginya Nyanda E, Sabi Issa, Mwanyonga Simeon P, Evans Denise
Department of Research Publications and Documentation, National Institute for Medical Research (NIMR), Dar es Salaam, Tanzania.
Health Economics and Epidemiology Research Office, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
Front Health Serv. 2024 Jul 11;4:1273739. doi: 10.3389/frhs.2024.1273739. eCollection 2024.
Pulmonary 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.
To 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.
Face-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.
Participants 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.
Complete 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.
在坦桑尼亚，肺结核（PTB）仍然是一种危及生命的疾病，对个人和社会造成负面的身体、经济、财务和心理社会影响。它主要降低了患者、幸存者及其家庭的生活质量，尤其是那些最贫困和社会地位低下的人群。
报告并讨论一项定性研究，该研究评估了肺结核患者和幸存者期望获得和实际获得的社会支持的性质。参与者有机会分享他们的经历，以及他们对所期望的社会支持是否对其寻求治疗行为和治疗依从性产生影响的看法。
在2020年10月至2021年3月期间，在一家结核病诊所对上述三组人群进行了有目的的面对面访谈。问题涵盖了与期望的社会支持类型以及治疗期间和治疗后的支持来源（如有）相关的主题。访谈持续进行，直到没有获得新的信息。使用NVivo 12软件辅助进行数据分析。
参与者指出在治疗期间和治疗后需要心理社会、经济和物质支持。然而，他们有时会得不到家人/家庭成员或社区其他成员的支持。由于这种经历，他们生活困难，在寻求治疗时需要自掏腰包支付交通费用时面临困境。幸存者证实，即使是他们的近亲也会拒绝提供支持，认为他们康复后不再需要。患者和幸存者还报告了社会隔离的经历，因为人们认为他们能够传播肺结核感染。所接触的结核病诊所提供的心理支持有限也是报告的另一种经历。结核病诊所工作人员的经历证实了他们的客户分享的几乎所有经历。由于支持有限，恢复力和自我护理被确定为应对的关键机制。
肺结核有可能完全康复，但没有社会支持很难恢复正常生活。政策和项目需要增加为结核病患者和幸存者提供社会支持的机会。这样做可能会改善与结核病相关的治疗、寻求护理的做法和依从性。
