Living with Stigma: The Experience of Tuberculosis Patients and Family Caregivers in Indonesia

Rakhmawati, Windy; Nilmanat, Kittikorn; Hatthakit, Urai

doi:10.5958/0976-5506.2019.03153.x

Cited by 6 publications

(14 citation statements)

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“…(20) One study found that Indonesian families and patients considered TB a frightening, severe, and dangerous disease. (22) It also revealed that this affected the adherence to treatment and quality of patient care. The support from family members is vital for the patient's care and following treatments, so the main reason for discontinuation of treatments in some patients is the lack of support from family members.…”

Section: Discussionmentioning

confidence: 99%

“…(21) A study of content analysis on TB patients and their family caregivers in Indonesia showed that TB stigma associated with psychosocial problems, including feelings of shame and social exclusion, was influenced by fear of transmitting the disease and the others' blame. (22) A qualitative study of nurses caring for TB patients in South Africa conducted the themes of fear, anxiety, stress, and risk of getting infected. (23) Therefore, several studies have shown the confusion, mental and psychological pressures in caregivers of TB patients.…”

Section: Discussionmentioning

confidence: 99%

“…In a content analysis study on patients with TB and their family caregivers in Indonesia, patient isolation was one of the subcategories. (22) One of the duties of the family is to observe the health protocols and keep the environment clean. Also, the caregiver must make sure the environment is clean and maintain standard precautions.…”

Section: Discussionmentioning

confidence: 99%

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Lived Experience of Iranian Family Caregivers of Tubercular Patients: A Qualitative Study

Mohebbi¹,

Dehbozorgi²,

Setoodeh³

et al. 2022

Invest. Educ. Enferm.

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Objective. To investigate the lived experience of family caregivers of persons with tuberculosis. Methods. In this study, the method of hermeneutic phenomenology. Data were collected through online in-depth semi-structured interviews with nine family caregivers of TB patients. The obtained data were thematically analyzed to explain the concept of home care for TB patients through van Manen's 6-step methodology. Results. After the thematic analysis, three main themes of caregivers'; mental distresses, quality care stasis, andfacilitated care were obtained from 944 primary codes and 11 categories. Conclusion. Family caregivers of these patients suffer from mental distress. This issue affects the quality and ease of caregiving for these patients. Therefore, policymakers of this area should pay attention to the family caregivers of these patients and attempt to provide support; they should try to improve their quality of life.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Lived Experience of Iranian Family Caregivers of Tubercular Patients: A Qualitative Study

Mohebbi¹,

Dehbozorgi²,

Setoodeh³

et al. 2022

Invest. Educ. Enferm.

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“…This is due to visible features associated with TB disease including weight loss, a misconception that TB is incurable, and its association with other stigmatising conditions such as poverty and human immunodeficiency virus (HIV). TB-related stigma contributes to undetected TB cases, delays in accessing timely TB diagnosis and care, poor TB treatment adherence, reduced likelihood of TB treatment success 6,7 , and development of drug-resistant TB [8][9][10] . Moreover, TB-related stigma may negatively impact employment opportunities for those affected.…”

Section: Introductionmentioning

confidence: 99%

“…Despite this, there is limited evidence concerning risk factors and prevalence of the psychosocial consequences of TB including stigma and mental illness, as well as the interventions to mitigate them. To date, there have been only a few reports from Indonesia on the local and national scenario concerning TB-related stigma 9,14,15 . There is a pressing need for timely interventions to reduce stigma and combat mental illness amongst people with TB to enable them to access available services and achieve better health, psychosocial, and economic outcomes.…”

Section: Introductionmentioning

confidence: 99%

Characterising and Addressing the Psychosocial Impact of Tuberculosis in Indonesia (CAPITA): A study protocol

Fuady¹,

Fitriangga²,

Sugiharto³

et al. 2022

Wellcome Open Res

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Background: Tuberculosis (TB)-related stigma remains a key barrier for people with TB to access and engage with TB services and can contribute to the development of mental illnesses. This study aims to characterise stigmatisation towards people with TB and its psychosocial impact in Indonesia. Methods: This study will apply a sequential mixed method in two main settings: TB services-based population (setting 1) and workplace-based population (setting 2). In setting 1, we will interview 770 adults with TB who undergo sensitive-drug TB treatment in seven provinces of Indonesia. The interview will use the validated TB Stigma Scale questionnaire, Patient Health Questionnaire-9, and EQ-5D-5L to assess stigma, mental illness, and quality of life. In Setting 2, we will deploy an online questionnaire to 640 adult employees in 12 public and private companies. The quantitative data will be followed by in-depth interview to TB-related stakeholders. Results: CAPITA will not only characterise the enacted stigma which are directly experienced by people with TB, but also self-stigma felt by people with TB, secondary stigma faced by their family members, and structural stigma related to the law and policy. The qualitative analyses will strengthen the quantitative findings to formulate the potential policy direction for zero TB stigma in health service facilities and workplaces. Involving all stakeholders, i.e., people with TB, healthcare workers, National Tuberculosis Program officers, The Ministry of Health Workforce, company managers, and employees, will enhance the policy formulation. The validated tool to measure TB-related stigma will also be promoted for scaling up to be implemented at the national level. Conclusions: To improve patient-centered TB control strategy policy, it is essential to characterise and address TB-related stigma and mental illness and explore the needs for psychosocial support for an effective intervention to mitigate the psychosocial impact of TB.

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Experiences of caregivers of people with dementia in Indonesia: A focus group study

Theresia,

Sani,

Evans‐Lacko

et al. 2023

Int J Geriat Psychiatry

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BackgroundMany people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context.AimsThis study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia.Materials and MethodsThis qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts.ResultsNineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis.DiscussionA perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising.ConclusionIn Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience.

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Living with Stigma: The Experience of Tuberculosis Patients and Family Caregivers in Indonesia

Cited by 6 publications

References 0 publications

Lived Experience of Iranian Family Caregivers of Tubercular Patients: A Qualitative Study

Lived Experience of Iranian Family Caregivers of Tubercular Patients: A Qualitative Study

Characterising and Addressing the Psychosocial Impact of Tuberculosis in Indonesia (CAPITA): A study protocol

Experiences of caregivers of people with dementia in Indonesia: A focus group study

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