Ethical issues in household TB contact investigations

Abstract

Household contact investigation (HCI) is an effective and widely used approach to identify persons with tuberculosis (TB) disease and infection globally. Despite widespread recommendations for the use of HCI, there remains poor understanding of the impact on and value of contact investigation for participants. Further, how HCI as a practice impacts psychosocial factors, including stigma and possible unintended disclosure of illness among persons with TB, their families, and communities, is largely unknown.

This exploratory qualitative study nested within a randomized trial (ClinicalTrials.gov: NCT04520113, 17 August 2020) was conducted in South Africa to understand the impacts of HCI on index patients living with TB and their household contact persons in two rural districts in the Limpopo province (Vhembe and Capricorn) and Soshanguve, a peri-urban township in Gauteng province. People with TB and household members of people with TB were recruited to participate in in-depth interviews and focus group discussions using semi-structured guides. We explored individual, interpersonal, and community-level perceptions of potential impacts of household contact investigation to elucidate their perceptions of HCI. Thematic analysis identified key themes.

Twenty-four individual interviews and six focus group discussions (n = 39 participants) were conducted. Participants viewed HCI as an effective approach to finding TB cases, helpful in educating households about TB symptoms and reducing barriers to health-related services. At the interpersonal level, HCI aided people with TB in safely disclosing their TB status to family members and facilitated family and social support for accountability. The introduction of HIV testing during HCI was reported by some participants as making household members slightly uncomfortable, decreasing interest in household members being tested for TB. HCI negatively impacted community-level TB and HIV-related stigma due to healthcare worker visibility at home.

Our data suggests varying impacts of HCI on people with TB, their families and interpersonal relationships, and communities, highlighting the importance of considering approaches that address concerns about community stigma and HIV testing to enhance acceptance of HCI.

ClinicalTrials.gov NCT04520113

Background

The World Health Organization (WHO) has proposed an ambitious strategy to end the global TB epidemic by 2035 [1]. To meet this goal, urgent attention is needed to factors that may influence the success of routine programmatic approaches, such as screening of household members of people diagnosed with TB.

Identifying people with TB and those at substantial risk of TB infection remains essential for global health and development [1,2]. In the South African context, most people with TB are diagnosed passively by presentation at health facilities [3]. However, persistent barriers contribute to clinic attendance: being asymptomatic (e.g., subclinical or early TB disease) [3], lack of knowledge about TB or TB symptoms [4,5], financial costs [6], transport availability, and facility proximity [7,8]. A common approach to ensuring contact persons access TB screening and are linked to care is household contact investigation (HCI) [9]. Though approaches may vary by setting, HCI typically involves healthcare workers visiting the home of a newly diagnosed person with TB and screening and/or testing household members for TB symptoms. Literature from both within and beyond the South African context demonstrates that HCI is effective across high TB burden settings in increasing TB case notification and TB detection, and decreasing mortality as well as TB prevalence [10,11]. However, HCI may cause potential ethical challenges. Though scant, there is some evidence that HCI may increase stigma, discrimination, and blame for people with TB; a better understanding of these challenges can help ensure that any potential harms are mitigated [12–14].