Caregiver Burden Among Families of Paediatric Patients With Tuberculosis: A Mixed‐Methods Study

ABSTRACT

Aim

To assess caregiver burden and its relationship with health literacy, self-efficacy, stigma, and social support among caregivers of children with tuberculosis in Shanghai, China.

Design

Explanatory sequential mixed-methods design.

Methods

In the quantitative phase, 132 caregivers were recruited from a Shanghai Hospital, and 21 participated in the qualitative interviews. Data were collected (April 2023–April 2025) using the Zarit Burden Interview scale, Chinese Health Literacy Scale for Tuberculosis, General Self-Efficacy Scale, Tuberculosis-related Stigma Scale, Multidimensional Scale of Perceived Social Support, and semi-structured interviews. Quantitative data were analysed using descriptive statistics and multiple regression analyses, and qualitative data were analysed using content analysis.

Results

Most caregivers were mothers (72.7%). Burden levels were classified as mild (58.3%), moderate (27.3%), or severe (2.3%). The quantitative analysis identified lower health literacy, limited social support, reduced self-efficacy, and being a female caregiver as significant predictors. Social support partially mediated and self-efficacy mediated the effect of perceived stigma and health literacy on caregiver burden, respectively. Qualitative themes revealed psychological and physical effects, impact on social life, and coping strategies.

Conclusion

Caregiver burden in paediatric tuberculosis is multidimensional and influenced by complex mechanisms. Interventions should address health literacy gaps, enhance self-efficacy, strengthen social support systems, and implement targeted stigma-reduction strategies while considering developmental-stage-specific needs.

Implications for Patient Care

Healthcare systems should routinely assess caregiver burden, and multidisciplinary teams should be trained to provide integrated targeted support.

Impact

This study demonstrates distinct stigma pathways and comprehensively shows that caregiver burden is significantly associated with modifiable psychosocial factors. Consequently, healthcare providers should develop targeted support interventions that address both psychological and practical caregiving challenges, ultimately contributing to improved patient care outcomes and caregiver well-being in tuberculosis management.

Reporting Method

This study adheres to the Good Reporting of A Mixed Methods Study checklist.

Patient or Public Contribution

None.