The provision of and need for social support among adult and pediatric patients with tuberculosis in Lima, Peru: a qualitative study

Abstract

BackgroundTuberculosis (TB) remains a significant public health problem in Peru, causing an estimated 35,000 new cases each year, 6.7% of whom are co-infected with HIV. Social support mechanisms are key in influencing health-seeking behavior, adherence, and overall patient wellbeing in clinical settings. We examine the types of social support received by TB patients and parents of pediatric patients in peri-urban Lima, Peru, to understand its role in patients’ psychosocial wellbeing during treatment.MethodsSemi-structured interviews were conducted between August 2004 and May 2005 among 43 individuals: 19 adults with TB, 8 adults with TB/HIV, 13 parents of pediatric TB patients, and 3 parents of pediatric TB/HIV patients.ResultsPatients described the need for psychosocial support to mitigate the difficulty of continually going to the clinic to take medications, tending to other family or professional responsibilities while on treatment, and confronting stigma and social isolation within their community. Family members most often contributed to meeting these psychosocial needs, and were also crucial in providing economic support to patients faced with burdensome medical expenses or who were forced to leave their jobs due to being on treatment. Most healthcare personnel were described as key providers of emotional support and encouragement for patients to successfully adhere to treatment, however there were a select few doctors whose “scare tactics” seemingly discouraged patient adherence. During the treatment process, patients described being more socially withdrawn as a result of feeling fatigued from their medications, however most participants also described forming new mutually supportive friendships among their fellow patients.ConclusionsDespite the general reluctance of patients to disclose their disease status, patients received a significant amount of psychosocial support from both family members to whom they disclosed, and from positive interactions with healthcare providers. High levels of depression were reported, with many patients voicing need for improved and more frequent psychological interventions. To improve the Peru TB program, participants suggested extending educational opportunities to patients’ families and the wider community, increasing the existing amount of nutritional support, and programmatic provision of vocational activities to increase economic opportunities.

Understanding pediatric tuberculosis: Perspectives and experiences of the parents in a city of India

“…In study done by Paz-Soldán et al also reported that parents of child were really selective in disclosing the condition of their children and parents who disclosed the child condition to other family member got tremendous love and care that helped lot in completing the treatment of child. [11] In agreement with other studies, [10][11][12] the suffering experienced by these participants was primarily linked to the likelihood of being discriminated against, which made them feel stigmatized. Despite TB being a curable disease, many professionals' different streams such as psychologists, anthropologists, sociologists, and TB analysts have repeatedly indicated that talking about the disease still causes discomfort and unease.…”

“…[11] The present study noted participants thinks that coming to here at health center and taking drugs in the presence of DOTS provider helped them in reminding to take regular treatment and if they forgot or have any problem during the course of treatment, there is someone who can help them. In case of home-based DOTS strategy that would be a question mark as many times child do not want to take drugs and it is hard for mother to convince them compared to taking drugs in the presence of DOTS provider.…”

“…In a study done in Peru by Paz-Soldán et al reported that parents of pediatric patients described meeting other parents at the health education sessions and striking up mutually supportive friendships that helped them in completing treatment. [11] In a study done by Angélica et al also noted that the support from the family and health worker was imminent in completion of treatment of patients. [10] …”

Sistemas de salud móvil integrados: rol de los factores socioculturales y el enfoque de sistemas sociotécnico

“…Diversos estudios cualitativos realizados en poblaciones vulnerables, en riesgo o en grupos excluidos en el Perú y en países en vías de desarrollo, se han realizado utilizando diversas técnicas como grupos focales, observaciones y entrevistas a profundidad (2)(3)(4) …”

“…que explora e identifica los aspectos socioculturales en pacientes con tuberculosis en el Perú, como la necesidad de tener soporte social (rol de la familia y del personal de salud), el valor del soporte emocional, el estigma percibido por los pacientes con tuberculosis, el rol de las redes sociales, entre otros (2) .…”