Participants
The participants of this study were caregivers of Indonesian children with HIV/AIDS who met the participant criteria. Participant inclusion criteria included caregivers of Indonesian children with a diagnosis of HIV/AIDS [6,7], and aged 2-18 years. Participant exclusion criteria included caregivers with Indonesian children who were sick during data collection process, caregivers were unwilling to participate in the study, and caregivers or HIV/AIDS Indonesian children were not cooperative during data collection. Participants received an explanation regarding the rights and obligations during the study. In addition, the researchers explained the purpose and benefits of the research to the participant's family or guardian before the researchers asked for voluntary approval to become a participant in the study (informed consent).
Design
An analytical study with cross sectional design was conducted in the community of HIV/AIDS Indonesian children undergoing outpatient treatment at Dr. Soetomo General Academic Hospital, Surabaya, Indonesia, and the community of HIV/AIDS Indonesian children in Probolinggo, Indonesia. This community of HIV/AIDS Indonesian children has been formed, and the researchers used a total sample in this study. This research was conducted from July to December 2019. This research was conducted in East Java, Indonesia (Probolinggo City and Surabaya City). The number of participants in the study were 53 participants of Indonesian children with HIV/AIDS. This study confirmed the use of ARV drugs in Indonesian children with HIV/AIDS, measured caregiver stigma, caregiver burden, caregiver coping, and quality of life for Indonesian children with HIV/AIDS.
The caregiver stigma was assessed using a measuared scale consisting of 9 items that measured perceived HIV stigma associated with people living with HIV/AIDS (PLWHA) and caregiver. The total score of stigma scale is in the range of 0-27, with a 4-point scale ranging from strongly disagree (0) to strongly agree (3). The Cronbach's alpha instrument value was 0.89 (PLWHA) and 0.92 (caregiver) [8,9].
Caregiver burden was assessed using Zarit Burden data instruments. This instrument consists of 22 items, which assess five main domains of stress burden, namely health, psychological well-being, financial, social life and patient relationships. The assessment is based on a 5-point Likert scale, from 0 = 'never' to 4 = 'almost always'. The final score ranges from 0 to 88, which is grouped into four categories: 0-20 (little or no burden), 21-40 (mild burden), 41-60 (moderate burden) and 61-88 (severe burden). Zarit Burden was declared valid and reliable with a Cronbach's alpha value of 0.93 [10,11].
Measurement of caregiver coping used a family crisis oriented personal evaluation scales (F-COPES) questionnaire. The instrument consists of 30-item questions designed to assess problem solving and coping strategies that families use when facing difficult situations. Caregiver assesses a series of coping techniques on 5 subscales namely: acquiring social support, seeking spiritual support, reframing, mobilizing family to acquire and accept help, and passive appraisal. Each subscale was assessed with 5 Likert points based on whether the family was involved in the technique [12]. F-COPES was declared valid and reliable with Cronbach’s alpha = 0.89 [13].
Measurement of the quality of life of children with HIV/AIDS used a pediatric quality of life inventory (PedsQL), which is a questionnaire used to evaluate health-related quality of life (HRQOL) in children. PedsQL is a general health instrument consisting of 23 items that assess 5 health domains (physical function, emotional function, psychosocial function, social function, and school function) in children and adolescents aged 2 to 18. There are 23 questions that include physical functions (8 items), emotional functions (5 items), social functions (5 items), and school functions (5 items). The assessment of response of each question is based on a 5-point Likert scale: never (0), almost never (1), sometimes (2), often (3), almost always (4). Scores are transformed to a scale of 0-100 (0 = 100; 1 = 75; 2 = 50; 3 = 25; and 4 = 0). The total score of 23 items is the average of all answers. The value was good if ≥ 70, and the instrument was valid and reliable with a Cronbach's alpha value > 0.7 [14-16].
Statistical Analysis
The statistical test used a multiple logistic regression test to obtain the effect of ARV drugs, caregiver stigma, caregiver burden, caregiver and caregiver coping on the quality of life of Indonesian children with HIV/AIDS. Statistical tests were significant if p < 0.05. In addition, this study employed Anova test to analyze the data.