Caregiver's burden of children living with HIV on antiretroviral therapy at an urban setup

Abstract

Context: Availability of antiretroviral therapy (ART) has helped to decrease morbidity and increase the longevity of children living with Human Immunodeficiency Syndrome (CLHIV/CLHA). These children require the special involvement of family members for adherence to care and support programs. Long-term caregiving stress can result in physical, social, emotional, and medical consequences for both the caregiver and the CLHIV. This study explores the burden and needs for support among CLHIV caregivers. Methods: A cross-sectional study was conducted at an ART Centre of Tertiary level Health Care Institute among 126 caregivers of CLHIV pretested and piloted semi-structured questionnaire and Zarit Burden Interview Scale (ZBIS) were employed to assess study objectives. Descriptive statistics and caregiver burden scoring were calculated. ZBIS score of 22 and above were considered additional burden for caregivers. Results: Mean age of caregivers was 34 ± 7.15 years. Among 126 CLHIV caregivers, 116 were female, while 110 had positive HIV serostatus. Ninety-seven percent disclosed their and the child's status to one or more family members. Mean caregiver ZBIS was 25 ± 7.08 with 71.5% caregivers having mild-to-severe levels of burden. Around 85% of caregivers knew correctly about four routes of HIV transmission although 8.7% had misconception regarding HIV transmission. Conclusions: ZBIS assessment shows emotional, financial, and future of child-related burden among CLHIV caregivers. There were gaps in the knowledge about HIV transmission, care and support needs of the CLHIV. The acquisition of HIV from parents in CLHIV suggests the need of strengthening the prevention of parent-to-child transmission program in Indian settings.

Pengalaman Keluarga Dalam Merawat Anggota Keluarga (Orang) Dengan Hiv/Aids

“…Ini bisa menyebabkan kelelahan, masalah punggung, gangguan tidur, dan penurunan kesehatan fisik bagi keluarga yang merawat pasien HIV. 18 Hasil penelitian menemukan, Keluarga sering kali menghadapi tantangan emosional dan psikologis, seperti rasa kecewa, kelelahan fisik, tekanan mental, kecemasan, atau perasaan tertekan akibat tanggung jawab yang berkelanjutan serta kekhawatiran akan penularan dan pengungkapan identitas ODHA. Beban psikologis yang dialami keluarga dapat berupa ketakutan dan kecemasan tentang terinfeksi HIV serta rasa bersalah dan putus asa karena tidak dapat memberikan perawatan yang optimal untuk ODHA.…”

Exploring Factors Associated with Quality of Life in Caregivers of Children and Adolescents with Sickle Cell Disease and HIV: A Comparative Analysis

“…Research findings indicate that as a child's illness advances, both the child and their caregivers undergo a decline in quality of life, leading to a notable deterioration in their physical, psychological, social, and economic welfare [ 18 ]. Caregivers of children with chronic illnesses, such as sickle cell disease and HIV, may experience significant impacts on their quality of life due to increased stress, financial strain, social isolation, and changes in routines [ 19 , 20 ].…”