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

BACKGROUND: Tuberculosis (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. METHODS: Semi-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. RESULTS: Patients 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 During the treatment process, patients described being more socially withdrawn as a result of feeling fatigued from their medications, however most participants also described forming new mutually supportive friendships among their fellow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. CONCLUSIONS: Despite 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.