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Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study

Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A... Hindawi AIDS Research and Treatment Volume 2021, Article ID 6660337, 14 pages https://doi.org/10.1155/2021/6660337 Research Article Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study 1 1 1 1 1 Ibrahim Mujjuzi, Paul Mutegeki, Sarah Nabuwufu, Ashim Wosukira, Fazirah Namata, 1 2 3 Patience Alayo, Sharon Bright Amanya , and Richard Nyeko Lira University, P.O. Box 1035, Lira, Uganda Department of Microbiology and Immunology, Lira University, P.O. Box 1035, Lira, Uganda Department of Paediatrics and Child Health, Lira University, P.O. Box 1035, Lira, Uganda Correspondence should be addressed to Richard Nyeko; rnyeko2@gmail.com Received 12 December 2020; Revised 29 August 2021; Accepted 1 September 2021; Published 13 September 2021 Academic Editor: Jim Tartaglia Copyright © 2021 Ibrahim Mujjuzi et al. +is is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Background. Family caregivers provide the bulk of care to children living with HIV. +is places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. +is may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda. Methods. A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ARTclinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically. Results. +e majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. +e mean burden scores significantly differed by caregivers’ age (P � 0.017), marital status (P � 0.017), average monthly income (P � 0.035), and child’s school attendance (P � 0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, re- spectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child’s care. Conclusions. Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context. 7,500 were new HIV infections [2]. +e high burden of HIV 1. Introduction has resulted in both direct and indirect effects on the It is estimated that about 1.7 million of the over 37.9 million population in low- and middle-income countries, leading to people living with HIV globally in 2018 were children aged various social and economic challenges for an already below 15 years, the majority of whom are in sub-Saharan vulnerable group of people [3]. Although antiretroviral Africa [1]. In Uganda, the country with the fifth-highest drugs and treatments have burgeoned, the burden of prevalence in the region, up to 100,000 (7.1%) of the esti- caregiving has not changed [4]. Antiretroviral therapy mated 1.4 million people living with HIV in 2018 were (ART) has reduced morbidity and mortality among people children below the age of 15 years, of which an estimated living with HIV, including children, thus making HIV 2 AIDS Research and Treatment become a chronic disease [5]. Chronic diseases, and children under 15 years. +is site was selected because of its therefore HIV, not only affect the lives of those suffering high client load, in addition to serving clients referred from from the illness but also affect the lives of family members all ART clinics in the subregion, and therefore provides a who take care of them [6], with both positive and negative relatively good representative population. Paediatric HIV consequences. Providing chronic care to children living with services in Uganda and the study context are provided HIV/AIDS presents unique demands and burdens to fam- according to the national ART guidelines, revised in De- ilies and the entire healthcare system [7], often associated cember 2016 to include initiating all HIV-infected clients on with negative effects on caregivers [4, 8]. +e negative effect ARTregardless of age, clinical stage, and CD4 cell count, the of caregiving has been described as a caregiver burden [9] “test and treat” policy [19]. +e HIV services are provided and it encompasses the physical, social, emotional, and fi- free with support from PEPFAR funding and include but are nancial toll of providing care [4, 8]. According to Chandran not limited to HIV testing services, ART, prophylaxis for et al., caregiver burden refers to “the physical, emotional, opportunistic infections, adherence counselling and psy- and financial hardships associated with providing care to a chosocial supports, and routine clinical and laboratory monitoring. Paediatric HIV services are largely facility- diseased individual” [5]. In low resource settings, Uganda inclusive, care burden is often contributed to by high levels based, especially for younger children who are followed up of poverty, illiteracy, and disruption of family social support according to the national guidelines with an evaluation at 2 systems. Pieces of evidence suggest an increasing level of weeks after initiation of ART, every month for the next stress in caregiving and this requires adequate attention to several months, and every 3 months afterwards. During the understand and help reduce this stress [4, 10]. follow-up visits, standard medical care is provided to all Caregivers and, by extension, families have often persons on ART routinely or as and when required, in- struggled to cope with this burden through various ways, cluding counselling, pick-up of prescriptions (antiretroviral including concealment of the child’s health status, drawing drugs, cotrimoxazole, and other drugs), physician evalua- strength from their faith and belief in God, and reaching out tions, and laboratory testing (CD4 lymphocyte count and for support. +ese reactions to cope with stressful situations viral load). and the demands of caregiving can be adaptive or malad- aptive, where some caregivers adapt well, while others do not 2.2. Study Population. Our study comprised caregivers of [11, 12]. Failure by caregivers of children living with HIV to paediatric HIV/AIDS patients aged 2–12 years who re- appropriately cope can adversely affect care-related out- ceived ART services from a tertiary level facility and who comes, including poor retention in chronic HIV care and have spent at least 6 months caring for the child. +e poor adherence to ART, consequently contributing to low caregivers were drawn from the HIV care clinic at the viral load suppression among children. study site as they came in for their ARTappointments. In While several studies have been done to assess care the study context, caregivers of paediatric HIV, on whom burden and identify coping strategies among caregivers, the children depend for most of their support, comprise a these have majorly centered on adults and other debilitating mixed group of individuals but mainly the biological diseases such as psychiatric disorders, dementia, autism, and general HIV patients [13–18]. Little attention has been paid mothers of the children who are themselves HIV-infected and receiving HIV care and treatment. A significant to the care burden experienced by persons on whom chil- number of HIV-infected children are also cared for by dren living with HIV depend for onward lifelong support, either a sibling or other close relatives, occasioned by the and there is a paucity of data on the same in resource-limited high number of orphans resulting from the over two contexts like the current study setting. +e few studies that decades of insurgency in northern Uganda and the HIV focused on caregivers of children were largely qualitative and scourge itself. in contexts that differ from that of the current study setting [4]. +is study, therefore, assessed care burden and coping strategies among caregivers of paediatric HIV/AIDS patients 2.3. Sample Size Estimation in a resource-poor setting in northern Uganda. 2.3.1. Quantitative Data. +e method for estimating the 2. Methods sample size for cross-sectional studies [20] was used for this 2 2 study, based on the following formula: N � Z p (1 − P)/e , at 2.1. Study Design and Setting. We used a cross-sectional 95% level of confidence, with P � 8% [21] and allowable mixed-method design to collect quantitative and qualitative error (e) of 5%. +e estimated sample size of 113 was data during August 2020. +e study was conducted in the obtained. antiretroviral therapy (ART) clinic of Lira Regional Referral Hospital (LRRH), a tertiary care health facility in Lira dis- trict, northern Uganda. +e facility receives patients from over 9 districts in the subregion and beyond, with a 2.3.2. Qualitative Data. We interviewed 15 respondents for catchment population of about 2.3 million, offering a wide the qualitative data. +ese were conveniently selected for in- range of general and specialized curative, promotive, and depth interviews because of their depth of experience in preventive health services. To date, the facility has over caring for HIV-infected children, a process that was carried 34,000 clients enrolled on ART, about 500 of whom are on until saturation was reached. AIDS Research and Treatment 3 Questions on the in-depth interview guide included the 2.4. Sampling Criteria. We used a consecutive sampling technique to recruit study participants for quantitative data, respondent’s demographics, relationship with the child, experiences in caring for a child with HIV, burdens or while a purposive sampling technique was used to select respondents for the individual in-depth interviews. difficulties faced in caring for the child, ways of coping with the burden, and general views on caring for HIV-infected children. Probes depended on a respondent’s experiences 2.5. Data Collection Instruments. For quantitative data, we and clarity of their narratives. +e interviews were later used a standard 22-item Zarit Burden Interview (ZBI) tool translated and transcribed into the English language. [22] to assess caregivers’ perceived burden of providing care. +e questions focus on the caregiver’s health, psychological well-being, finance, social life, and interpersonal relation- 2.7. Data Management and Analysis ships that cause stress and strain. +e reliability of the ZBI 2.7.1. Quantitative Data. Completeness of data was ensured tool measured by Cronbach’s coefficient has been reported during data collection through daily reviews and taking to range from 0.77 to 0.94 [11, 22–24]. +e 22 items are corrective actions. Data were entered, cleaned, and analysed assessed on a 5-point Likert scale, ranging from 0 �“never” using Statistical Package for Social Sciences (SPSS) software to 4 �“nearly always.” Individual item scores are added up to (IBM SPSS Statistics for Windows, Version 23.0, Armonk, give a total score ranging from 0 to 88, with higher scores NY: IBM Corp.). Descriptive statistics were used to sum- indicating a higher perceived burden. +e cut-off points for marize the data obtained from the participants. Continuous the ZBI were as follows: 0–20 (little or no burden), 21–40 (mild-to-moderate burden), 41–60 (moderate-to-severe variables with approximately normal distribution were de- scribed using means (standard deviations), while no nor- burden), and 61–88 (severe burden). Besides, a standard 29- mally distributed variables were described using medians item Family Crisis Oriented Personal Evaluation Scale (F- (interquartile ranges). +e analysis of variance (ANOVA) COPES) was used to assess caregivers’ coping. +e F-COPES and independent t-tests were used to examine the differences has an internal consistency of 0.89 [15, 25] and is based on a in the mean burden scores regarding sociodemographic 5-point scale with scores ranging from 1 to 5, where characteristics. An exploratory factor analysis using prin- 1 �strongly disagree, 2 �moderately disagree, 3 �neither cipal component analysis with varimax rotation was used on agree nor disagree, 4 �moderately agree, and 5 �strongly the coping data to assess the empirical support of the original agree. +e five subscales designed in the F-COPES include scales applied to this sample of the population. Factor acquiring social support, reframing, seeking spiritual sup- analysis provides a preliminary analysis of how a scale port, mobilizing the family to acquire and accept help, and passive appraisal [25]. +e tools were used to collect soci- measures the concepts it is designed to measure [13]. +e scree test and the eigenvalues >1 rule and a factor loading of odemographic information, care burden, and coping at least 0.35 [26] were used to determine the number of strategies. factors. Factors with at least three items loaded on them were For the qualitative data, we developed an in-depth in- viewed as more psychometrically stable [27]. Internal terview guide in line with our study objectives to explore consistency was estimated using Cronbach’s α coefficient. caregivers’ perspectives and experiences of caring for HIV- Pearson correlation coefficient and multiple linear regres- infected children. sion analyses were used to assess the relationship between the coping scales and sociodemographic characteristics. 2.6. Data Collection Statistical significance was set at P<0.05. 2.6.1. Quantitative Data. Caregivers of paediatric HIV cli- ents who accessed ARTservices from LRRH were identified 2.7.2. Qualitative Data. +e qualitative data generated at the time of their appointment visit. Data were collected from the in-depth interviews were transcribed and from consenting participants using an interviewer-admin- analysed manually using content thematic analysis. +e istered questionnaire after explaining the purpose, research researchers read, coded, and agreed on the subthemes. procedure, and their rights as participants in the study. +e +e analysis focused on the responses around the ex- interview took approximately 20–25 minutes. periences and challenges of providing caregiving and the strategies often adopted by the respondents in trying to overcome these challenges or burdens of caregiving. +is 2.6.2. Qualitative Data. Individuals identified for the first step in the analysis was aimed at carefully reading the qualitative study were approached and those who agreed to transcripts and noting down initial views about each participate were interviewed after giving informed consent. participant, a within-case analysis in each transcript and +e interview was conducted in a convenient private room noting themes. +e next step involved comparing the within the ARTclinic to explore the care burden and coping themes from one case to the other across all the tran- approaches of the caregivers. It was moderated by the re- scripts and noting themes that were relevant to the re- searchers using a semistructured in-depth interview guide search questions. Ultimately, relevant compelling quotes and audio-recorded, in addition to taking notes. Each ses- which represented lucid elements of our working themes sion took about 30 minutes and was conducted in the local were selected. language which was best understood by the respondents. 4 AIDS Research and Treatment Table 1: Sociodemographic characteristics of study participants. 3. Results Characteristics Frequency, N (%) 3.1. Quantitative Results Caregivers characteristics Gender 3.1.1. Sociodemographic Characteristics of Study Participants. Male 28 (24.8) +e majority, 75.2% (85), of the 113 respondents were fe- Female 85 (75.2) males, with a median age of 38 years (IQR 12) and an age Age (years) range of 18–74 years. More than one-half of the caregivers, 18–29 21 (18.6) 69.0% (78), were biological parents of the child, while 31.0% 30–39 42 (37.2) (35) were other relations that typically comprised other ≥40 50 (44.2) extended family members (Table 1). At least 16.8% (19) of Relation to child the respondents were caring for two or more children living Mother 58 (51.3) with HIV. +e median age of the children was 9 years (IQR Father 20 (17.7) 4), over half of whom were females (55.8%), and at least Others 35 (31.0) Highest level of education 15.0% (17) had been in care for over 10 years (median 5 years Primary 65 (57.5) [IQR 4]). Up to 21.2% (24) of the children had been generally Secondary 28 (23.0) sickly despite ART. +e rest of the sociodemographic Tertiary 11 (9.7) characteristics are as shown in Table 1. No formal education 11 (9.7) Occupation Formal employment 12 (10.6) 3.1.2. Descriptive Statistics (Mean/SD) of Individual Care Self-employed 44 (38.9) Burden Scores. Table 2 summarizes the individual mean care Peasant farmer 38 (33.6) burden scores related to each of the 22-item ZBI care burden Unemployed 19 (16.8) questions. +e mean scores for the individual questions Marital status ranged from a low of 0.53 for the question “Do you feel Single 54 (47.8) uncomfortable about having friends because of your child?” Married 30 (26.5) to a high of 3.58 for the question “Do you feel you should be Divorced 10 (8.8) doing more for your child?” Moreover notable was the low Widowed 19 (16.8) mean score relating to the question “Do you feel that you Children living with HIV/AIDS in household don’t have enough money to take care of your child in 1 child 94 (83.2) 2 and more 19 (16.8) addition to the rest of your expenses?” (mean �1.23). Average monthly household income Similarly, the mean score on the question “Do you feel that ˂250,000 46 (40.7) your child negatively affects your relationships with other ≥250,000 67 (59.3) family members or friends?” was low (mean �0.89). +e low Child characteristics ranking of the question “Do you feel you have lost control of Gender your life since your child’s illness? (mean �0.64) demon- Male 50 (44.2) strates a type of resilience and shows that the “burn-out Female 63 (55.8) syndrome” has not yet cropped up among the caregivers in Age (years) the study context (Table 2). 5 and below 17 (15.0) Above 5 96 (85.0) School attendance 3.1.3. Level of Care Burden. +e overall mean burden score Yes 102 (90.3) was 36.9±9.7, where the respondents experienced one form No 11 (9.7) of care burden or the other to varying extents. +e majority Duration in HIV care of the caregivers, 65.6% (74), had mild-to-moderate care <10 years 96 (85.0) burden, 30.1% (34) had a moderate-to-severe burden, 2.7% ≥10 years 17 (15.0) (3) had little or no burden, and only 1.8% (2) had severe Health condition since ART burden (Figure 1). Healthy 89 (78.8) Sickly 24 (21.2) 3.1.4. 7e Relation between Care Burden and Caregivers’ Sociodemographic Characteristics. +e mean care burden statistically significant, P � 0.039. +e burden scores relating score was significantly higher among caregivers in the age to the rest of the caregiver and child sociodemographic range of 30–39 years (39.07±10.70, P � 0.017), caregivers characteristics are as shown in Table 3. who were divorced (44.00±14.46, P � 0.017), and those with an average monthly household income less than $67 or approximately $2 a day (39.24±10.14, P � 0.035) (Table 3). 3.1.5. Descriptive Statistics of Coping Strategies Assessment. Likewise, respondents caring for HIV positive children who Table 4 summarizes the mean scores for each item in the 29- were attending school had lower burden scores item F-COPES used to assess coping strategies among the respondents. +is ranged from a low of 1.77 for the strategy (36.30±9.30) compared to those caring for children who were not in school (42.64±11.99), and this difference was relating to item C26 “seeking advice from a minister” to a AIDS Research and Treatment 5 Table 2: Mean scores of caregivers’ responses to care burden assessment questions (n �113). Item ZBI care burden questions Mean SD Variance no. B1 Do you feel that your child needs more help than he/she needs? 3.07 1.03 1.07 B2 Do you feel that you don’t have enough time for yourself because of the child? 1.48 1.30 1.70 B3 Do you feel stressed caring for the child and trying to meet other responsibilities for your family or work? 2.43 1.32 1.75 B4 Do you feel embarrassed about your child’s condition? 0.75 1.17 1.37 B5 Do you feel angry when you are with your child? 0.76 1.10 1.20 B6 Do you feel that your child negatively affects your relationships with other family members or friends? 0.89 1.29 1.67 B7 Are you afraid of what the future holds for your child? 1.88 1.52 2.31 B8 Do you feel your child is dependent on you? 3.46 0.79 0.63 B9 Do you feel strained when you are around your child? 0.55 1.04 1.10 B10 Do you feel your health has suffered because of your involvement with your child? 1.33 1.31 1.72 B11 Do you feel that you don’t have as much privacy as you would like because of your child? 0.86 1.22 1.50 B12 Do you feel that your social life has suffered because you are caring for your child? 0.59 1.13 1.28 B13 Do you feel uncomfortable about having friends because of your child? 0.53 1.17 1.36 Do you feel that your child seems to expect you to take care of him/her as if you were the only one he/she B14 3.38 0.96 0.92 could depend on? Do you feel that you don’t have enough money to take care of your child in addition to the rest of your B15 1.23 1.45 2.09 expenses? B16 Do you feel that you will be unable to take care of your child much longer? 1.52 1.43 2.06 B17 Do you feel you have lost control of your life since your child’s illness? 0.64 1.09 1.18 B18 Do you wish you could leave the care of your child to someone else? 1.12 1.36 1.84 B19 Do you feel uncertain about what to do about your child? 1.34 1.41 1.98 B20 Do you feel you should be doing more for your child? 3.58 0.69 0.48 B21 Do you feel you could do a better job of caring for your child? 3.02 1.16 1.34 B22 Overall, how burdened do you feel? 2.50 1.23 1.52 SD: standard deviation. the Cronbach’s alpha estimate, was 0.68, while the interitem 65.6% coefficients (Cronbach’s α) for each of the original five subscales were Acquiring SocialSupport (0.69), Reframing(0.74), Seeking Spiritual Support (0.09), Acquire & Accept Help (0.40), and Passive Appraisal (0.48). 30.1% 3.1.6. Relation of Coping Strategies with Caregivers’ Socio- demographic Characteristics. A principal component factor 2.7% 1.8% analysis with varimax rotation was performed on the coping data to assess the experiential support for the original five Little or No burden Mild-mod burden Mod-Severe burden Severe burden (score (score 0-20) (score 21-40) (score 41-60) 61-88) scales applied to the current sample population. Using an Number 374 342 eigenvalue of >1.0 as the criterion resulted in 10 factors Figure 1: Level of care burden experienced by caregivers. being extracted from the entire pool of items. However, based on the original five-factor scale and given the marked drop in the percentage of variance explained by the sixth factor on the scree plot, a five-factor solution was accepted as high of 4.99 relating to item C29 “having faith in God” as a coping strategy. A mean score per item of greater than 3.0 the best one and was used for the exploratory factor analysis. +ese explained 47.3% of the total variance in the 29-item indicated that the item was a support component strongly used by the respondents (Table 4), implying, therefore, that F-COPES as applied to the current study population. +e new explanatory factors could be categorized as follows: there was a good range of coping options adopted by the caregivers who participated in this study, given that 22 out of Factor 1: Internal Strength (6 items: 3, 7, 11, 12, 13, and 21), accounting for 13.9% of the variance; Factor 2: Seeking 29 options had an individual mean score of ≥3.0. Furthermore, as shown in Figure 2, the respondents used Community Support (4 items: 8, 10, 27, and 28), accounting the original five subscales as coping strategies to varying extents. for 11.6% of the variance; Factor 3: Information Seeking (7 Acquiring social support was the strongest support system and items: 1, 2, 4, 5, 16, 19, and 24), accounting for 8.9% of the ranked highest (median � 4.2) in the extent of use, followed by variance; Factor 4: Acceptance (4 items: 15, 22, 23, and 25), accounting for 6.9% of the variance; and Factor 5: Psy- seeking spiritual support (median � 4.0) as the next highly ranked support system, while acquiring and accepting help chosocial Support (4 items: 6, 9, 20, and 26), accounting for 6.0% of the variance. Each item’s loading on the five (median � 2.8) was the weakest coping strategy (Figure 2). +e internal consistency of the scale for this study, as indicated by extracted factors is shown in Table 5. +e Cronbach’s alpha 6 AIDS Research and Treatment Table 3: Care burden scores and sociodemographic characteristics difficulties occur unexpectedly” (item 18), and “having faith of caregivers of HIV-infected children in northern Uganda. in God” (item 29). Variables n Mean±SD Statistics P value Caregivers characteristics 3.1.7. 7e Relationship between Coping Strategies and Soci- Gender a odemographic Characteristics. Table 6 shows the correlation Male 28 34.54±8.51 1.51 0.135 and multivariate linear regression beta coefficients of the Female 85 37.71±10.00 relationship between the extracted coping subscales and Age (years) respondents’ sociodemographic characteristics. Marital 18–29 21 31.76±8.73 4.26 0.017 status was positively correlated with Information Seeking, 30–39 42 39.07±10.70 ≥40 50 37.28±8.56 implying that the use of information-seeking becomes more Relation to child frequent as the marital status changes from “single” to Mother 58 37.76±10.14 0.62 0.541 “widowed.” Likewise, the level of monthly income showed a Father 20 35.00±9.29 positive relationship with the Psychosocial Support subscale, Others 35 36.63±9.31 indicating that caregivers with higher income used more Highest level of education psychosocial support for coping. +ere was a negative Primary 65 37.45±9.48 1.23 0.304 correlation between occupation and Information Seeking, Secondary 26 37.35±9.04 implying that caregivers less frequently used information- Tertiary 11 31.64±12.81 seeking strategies as their occupation status tends towards No formal education 11 38.09±8.89 being unemployed. Caregivers used less of the strategy of Occupation Formal employment 12 38.83±13.81 0.46 0.710 Seeking Community Support the longer the child remained Self-employed 44 37.73±10.72 in care. Peasant farmer 38 35.92±7.55 Unemployed 19 35.84±8.44 Marital status 3.2. Qualitative Results b ∗ Single 54 34.48±8.32 3.53 0.017 Married 30 38.87±8.62 3.2.1. Care Burden. In this study, we sought to address two Divorced 10 44.00±14.46 major research questions: care burden and the coping Widowed 19 37.05±10.34 strategies among caregivers of paediatric HIV/AIDS pa- Children living with HIV/AIDS in HH tients. From the qualitative analysis, the following themes 1 child 94 36.23±9.90 −1.68 0.095 emerged as having major bearings on care burden: financial, 2 or more 19 40.32±8.13 psychosocial, health facility-related, and child health-related Average monthly household income ∗ burdens. ˂250, 000 46 39.24±10.14 2.14 0.035 ≥250, 000 67 35.33±9.15 (1) Financial Burden. Financial constraints were variously Child characterises expressed as a key burden by nearly all the caregivers. +is Age (years) is related mainly to the inability to provide for the basic 5 and below 17 35.88±10.00 −0.48 0.635 Above 5 96 37.10±9.70 family and the child’s needs in terms of feeding, clothing, School attendance shelter, and education, often forcing the caregivers to do a ∗ Yes 102 36.30±9.30 −2.09 0.039 casual labour, described as “odd jobs,” to sustain the No 11 42.64±11.99 family needs. +is meant that meeting the family and the Duration in HIV care child’s other needs would sometimes take priority over <10 years 96 37.03±9.96 0.29 0.774 the visits to the health facility for the child’s related ≥10 years 17 36.29±8.40 medications. Caregivers lacked the time and the means of Health condition since ART meeting transport costs to take their children to the Healthy 89 36.13±9.74 −1.67 0.098 clinic. +is was a major barrier as exemplified by state- Sickly 24 39.83±9.22 a b ments from some of the respondents who asserted the Independent t-test (df �1); ANOVA (F); P value is significant; following: HH �household. “...it is hard taking care of him daily because he would love to eat nice things like meat, fish. Sometimes he sees those estimates for the five extracted factors were higher than nice things from neighbours and it is usually not affordable those for the original subscales and ranged from 0.51 for the for me...I also have to work hard weeding people’s gardens Psychosocial Support subscale to 0.80 for the Internal to take care of the children and sometimes I am not paid on Strength subscale. +e overall Cronbach’s α coefficient for time,” said a 54-year-old grandmother. the factors loaded (25 items) was 0.71. Four items of the original 29-item F-COPES “dropped out” by not loading on “...at times, she refuses to take her medication because I any factor greater than 0.35. +ese were “attending church have not been able to afford to buy for her good food such as services” (item 14), “knowing luck plays a big part in how “mukene”(silverfish) and others...,” said a 29-year-old well we can solve family problems” (item 17), “accepting that mother. AIDS Research and Treatment 7 Table 4: Descriptive statistics of caregivers’ responses to the coping strategy questions (n �113). Item no. Item Mean SD Variance C1 Sharing our difficulties with relatives 4.13 1.36 1.85 C2 Seeking encouragement and support from friends 4.12 1.29 1.67 C3 Knowing we have the power to solve major problems 2.80 1.55 2.41 Seeking information and advice from persons in other families who have faced the same or similar C4 4.13 1.27 1.62 problems. C5 Seeking advice from relatives (grandparents, etc.) 4.14 1.24 1.53 C6 Seeking assistance from community agencies and programs designed to help families in our situation 2.01 1.47 2.17 C7 Knowing we have the strength within our family to solve our problems 2.74 1.51 2.28 C8 Receiving gifts and favours from neighbours 3.15 1.64 2.70 C9 Seeking information and advice from the family doctor 2.47 1.68 2.81 C10 Asking neighbours for favours and assistance 3.23 1.62 2.61 C11 Facing the problem head-on and trying to get the solution right away 3.71 1.55 2.41 C12 Watching T.V. 2.40 1.46 2.12 C13 Showing that we are strong 3.00 1.67 2.80 C14 Attending church services 4.91 0.34 0.12 C15 Accepting stressful events as a fact of life 4.46 1.04 1.07 C16 Sharing concerns with close friends 4.47 0.99 0.98 C17 Knowing luck plays a big part in how well we can solve family problems 1.81 1.17 1.37 C18 Accepting that difficulties occur unexpectedly 4.58 0.74 0.55 C19 Doing things with relatives (get-togethers, dinners, etc.) 4.34 1.09 1.19 C20 Seeking professional counselling and help for family difficulties 3.47 1.64 2.70 C21 Believing we can handle our problems 3.12 1.57 2.47 C22 Participating in church activities 4.80 0.70 0.49 C23 Defining the family problem more positively so that we do not become too discouraged 4.01 0.94 0.88 C24 Asking relatives how they feel about the problems we face 3.93 1.15 1.32 C25 Feeling that no matter what we do to prepare, we will have difficulty handling problems. 3.95 1.03 1.05 C26 Seeking advice from a minister 1.77 1.24 1.54 C27 Believing if we wait long enough, the problem will go away 3.91 1.31 1.71 C28 Sharing problems with neighbours 3.90 1.45 2.11 C29 Having faith in God 4.99 0.09 0.01 SD: standard deviation. they could not give their children the drugs in the presence Passive of their neighbours and friends. A 36-year-old caregiver taking care of an orphaned HIV- Accept Help 2.8 infected child said: Spiritual 4 “...the neighbours also fear me because they think I also Reframing 3.6 have HIV/AIDS. I also had fears that caring for this child will lead me into contracting it (HIV/AIDS).” Social 4.2 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 Disclosure of the child’s and/or the caregiver’s HIV Median Score status was another challenge expressed by the caregivers as presenting a huge psychological burden, since the children Figure 2: Extent of caregivers’ usage of the F-COPES subscale have often questioned why they needed to take the drugs support system. daily while other children/siblings did not. Lack of disclo- sure also resulted in various hurdles in caregiving, including “...I do odd jobs to take care of the child and as I am old, it is poor adherence: hard for me,” said a 44-year-old grandmother. “...it was also hard telling the child that he is positive and it (2) Psychosocial Burden. Most responses related to is hard making him adhere to his drugs since he doesn’t see psychosocial burden rotated around stigmatization, dis- his friends taking drugs,” asserted a 57-year-old male crimination, and disclosure of the child’s status. Caregivers caregiver. expressed being stigmatized and discriminated against be- cause of their child’s HIV status, mainly from within the Also related was the effect of parenting on care burden, community where they live. For some caregivers, this which was highlighted by some respondents as exemplified hindered their ability to care for the child effectively, since by the following statement: 8 AIDS Research and Treatment Table 5: Five-factor loading of items in the coping strategy (F-COPES) assessment scale (n �113). Factor loadings F-COPES items 1 2 3 4 5 C1 Sharing our difficulties with relatives 0.102 −0.130 0.730 0.071 −0.016 C2 Seeking encouragement and support from friends 0.145 0.235 0.484 −0.342 −0.299 C3 Knowing we have the power to solve major problems 0.742 −0.009 −0.046 0.099 0.088 Seeking information and advice from persons in other families who have faced the same or C4 0.129 0.272 0.426 −0.148 0.063 similar problems C5 Seeking advice from relatives (grandparents, etc.) 0.020 −0.129 0.671 0.177 0.185 Seeking assistance from community agencies and programs designed to help families in C6 0.084 −0.091 0.196 −0.142 0.442 our situation C7 Knowing we have the strength within our family to solve our problems 0.812 0.033 −0.126 0.052 0.077 C8 Receiving gifts and favours from neighbours 0.175 0.831 0.026 0.016 0.092 C9 Seeking information and advice from the family doctor 0.265 0.100 0.094 −0.109 0.548 C10 Asking neighbours for favours and assistance 0.017 0.859 0.082 0.083 0.048 C11 Facing the problem head-on and trying to get the solution right away 0.497 0.409 0.089 0.230 0.034 C12 Watching T.V. 0.643 −0.017 0.322 −0.037 −0.066 C13 Showing that we are strong 0.737 −0.059 0.137 0.334 −0.226 C14 Attending church services 0.078 −0.022 −0.127 −0.266 0.069 C15 Accepting stressful events as a fact of life −0.083 0.305 −0.063 0.418 −0.580 C16 Sharing concerns with close friends −0.215 0.305 0.541 −0.197 −0.277 C17 Knowing luck plays a big part in how well we can solve family problems −0.120 −0.085 −0.107 −0.713 0.145 C18 Accepting that difficulties occur unexpectedly −0.007 0.245 0.065 0.120 −0.717 C19 Doing things with relatives (get-togethers, dinners, etc.) 0.216 0.143 0.535 0.142 0.111 C20 Seeking professional counselling and help for family difficulties −0.104 0.074 0.017 −0.125 0.551 C21 Believing we can handle our problems 0.672 −0.075 0.049 −0.120 0.072 C22 Participating in church activities −0.003 −0.168 0.199 0.454 0.029 C23 Defining the family problem more positively so that we do not become too discouraged 0.378 0.120 −0.051 0.632 −0.103 C24 Asking relatives how they feel about the problems we face −0.135 0.141 0.526 0.244 0.010 C25 Feeling that no matter what we do to prepare, we will have difficulty handling problems 0.105 0.170 −0.115 0.592 −0.025 C26 Seeking advice from a minister −0.062 0.110 −0.103 0.271 0.526 C27 Believing if we wait long enough, the problem will go away −0.220 0.480 −0.046 0.311 −0.107 C28 Sharing problems with neighbours −0.251 0.614 0.272 −0.025 −0.216 C29 Having faith in God 0.183 −0.089 0.036 −0.089 −0.214 Table 6: Correlation coefficients and standardized beta weights between the five coping subscales and caregiver and child sociodemographic characteristics (n �113). Factor 1 Factor 2 Factor 3 Factor 4 Factor 5 R b r b r b r b r b Gender 0.052 −0.101 −0.115 −0.034 −0.128 −0.236 0.017 −0.033 −0.149 −0.103 Age −0.118 −0.129 0.055 0.085 0.105 −0.021 0.041 0.049 −0.036 0.029 Relation −0.103 −0.024 −0.103 −0.095 0.061 0.063 −0.025 −0.050 −0.009 −0.040 Education 0.044 −0.039 −0.180 −0.031 0.098 0.125 0.025 0.025 0.158 0.063 ∗∗ ∗ Marital status 0.155 0.160 −0.152 −0.117 0.258 0.285 −0.029 −0.103 −0.020 0.000 ∗∗ ∗ ∗ ∗ Occupation −0.311 −0.256 0.176 0.069 −0.223 −0.196 0.035 −0.003 −0.129 −0.114 ∗∗ ∗ Income 0.047 0.054 −0.149 −0.153 −0.175 −0.202 0.003 0.015 0.360 0.314 No. of HIV+ children −0.055 0.003 0.152 0.209 0.029 0.028 0.125 0.124 −0.046 0.098 ∗ ∗ Child’s age −0.145 −0.262 −0.054 0.128 0.073 0.037 −0.172 −0.264 0.083 0.024 Schooling 0.084 0.058 −0.014 −0.049 0.092 0.084 −0.079 −0.105 −0.232 −0.143 ∗∗ ∗ Duration in care 0.098 0.220 −0.254 −0.295 0.079 0.003 0.003 0.145 0.034 0.015 Child’s health 0.091 0.036 −0.113 −0.058 −0.009 −0.070 −0.037 −0.029 0.061 0.080 Adj R 0.075 0.075 0.113 −0.042 0.082 Factor 1: Internal Strength; Factor 2: Seeking Community Support; Factor 3: Information Seeking; Factor 4: Acceptance; Factor 5: Psychosocial Support. ∗ ∗∗ P<0.05; P<0.01; r �Pearson’s coefficients; b �standardized beta coefficients. AIDS Research and Treatment 9 “. . .and it is hard making him adhere to his drugs since he “...the most painful of my experiences was the loss of this child’s mother. From then, I found it very difficult to give doesn’t see his friends taking...,” commented a 57-year-old father. the medication to the child, defaulting medication time...,” said a 36-year-old female caregiver of an orphaned HIV- infected child. 3.2.2. Coping Strategies. From the analysis of the coping (3) Healthcare-Related Burden. Caregivers highlighted strategies, the following themes emerged as the most common strategies used by the caregivers in the study various healthcare-related components as factors contrib- uting to deterrent and burden in caring for the HIV-infected context: social support, spiritual support, and acceptance. child, especially as far as health facility appointment visits were concerned. +e long waiting hours in the health facility (1) Social Support. Findings from the qualitative arm re- garding how respondents coped seem to support the results on appointment dates and the clashing of the child’s and the from the quantitative study. Sharing the problems faced by caregiver’s appointment dates for some caregivers who are other friends caring for HIV-infected children (social sup- receiving care from different health facilities were reported port) was a theme that emerged as one of the commonly to be too burdensome, in addition to the prohibitive transport costs. +e following quotes exemplify such used coping strategies by the caregivers. +is was exem- plified by the following expressions: concerns: “...a friend of mine was almost giving up on caring for her “. . .the child picks drugs here from Lira regional referral and sometimes the dates for picking his drugs clashes with child, I said to her, now that you know your child is suf- fering from HIV/AIDs, don’t let her die, take care of her and mine in Otuke health centre,” said a 57-year-old HIV- positive caregiver. you get blessings, and now the child is 8 years old and healthy...,” said a 22-year-old mother. “...lack of transport money to come to the clinic on ap- “...It was only one day that I and some other people caring pointment date sometimes make us miss picking drugs on time and the child misses some doses,” commented a 37- for children living with HIV/AIDs underwent a training conducted by LUCITA in caring for these children, so this year-old mother. gave me the courage to continue caring for this child,” said a 46-year-old male caregiver. (4) Child’s Health-Related Burden. For some caregivers, constant sicknesses of the HIV-infected children under their (2) Spiritual Support. Spiritual support also emerged as care were reported to be challenging, since this necessitated one of the common strategies used by the caregivers to cope frequent visits to the health facilities for medications: with the burden of caregiving. A number of the respondents expressed attending prayer sessions, reading the Bible, and “I have been suffering from nursing him in the hospital considering that he is always ill especially when he had surrendering themselves to God as a way of getting relief from the burden of caregiving (spiritual support): TB...,” stated a 37-year-old mother. “....I am a widow and now acting as a mother as well as a “I have completely surrendered these children and myself to father. 7erefore, I always find it very difficult to give God. Without God, I wouldn’t have persevered all this long proper care to this child and other children as well... getting together with these children. 7erefore, I put God first and what to eat is always a challenge and at times whenever this ART medication second...,” one of the respondents child is admitted to the hospital, we stay there hungry since asserted. we lack what to eat,” lamented a 41-year-old mother of six. Medication time was reported by most of the caregivers (3) Acceptance. Most caregivers expressed the fact that ac- as a challenging and burdensome task, given their fixed ceptance of the child’s HIV status and the responsibility of schedules which should be administered or supervised by the caregiving did give them the strength and courage to cope caregivers, especially for younger children. +is was reported with the challenges they encountered. +is was exemplified to result, sometimes, in the medication being administered by various statements as follows: to the children late. Likewise, defaulting adherence was reported by some caregivers as a big challenge because most “...we should continue being positive while caring for these children intentionally do not want to take their drugs, since children because it wasn’t their will to be in this condition, they feel they are not sick and their friends are not taking the to be born with HIV/AIDs. Let us look at them as if they are drugs: part of us, let us treat them equally with other children, and give them what other children also have,” said a 43-year- “...the most painful of my experiences was the loss of this old female caregiver. child’s mother. From then, I found it very difficult to give “...I advise other mothers to take care of their children with the medication to the child, defaulting medication time. . .,” one heart and to also love them a lot. I advise other parents said a 36-year-old female caregiver. 10 AIDS Research and Treatment +ere was, however, a notably low mean score relating to not to abandon their children who are on ARVs,” said a 23- year-old mother. the question “Do you feel that you don’t have enough money to take care of your child in addition to the rest of your “My advice to other people caring for children living with expenses?” (mean �1.23), which was not in tandem with the HIV is that they should show them, love, be close to them expressions from the qualitative study where most of the and guide them when taking their medications and other respondents highlighted financial constraints as a major information from the clinic concerning their health status, burden in caregiving. +is is astounding and could partially and give them food,” commented a 36-year-old mother. be explained by the fact that respondents who participated in the in-depth interviews had “experienced it all in caring for 4. Discussion an HIV-infected child” and reflects the role of exploratory studies in providing more perspectives to a context. +ere is a paucity of literature on caregiving and its asso- ciated burden among family caregivers of children living with HIV in low-resource settings. Consequently, there is a 4.2. Factors Associated with Care Burden. +e burden of poor understanding of the care burden and how individuals caregiving was significantly influenced by certain caregivers’ and families respond to such a demand for chronic care. +is sociodemographic factors. Our results showed that care- study investigated the care burden among caregivers of HIV- givers aged 30–39 years experienced more burden than those infected children in a low-resource context and how the in other age categories, which closely mirror those reported respondent population coped with the demands and the in a study by Rahmani et al. among caregivers of schizo- burden of caregiving. +e study thus offers new insights and phrenic patients in Iran [11], suggesting a tendency to higher understanding of caregiver burden and coping strategies for burden at an older age. Rutakumwa et al. in a previous study paediatric HIV in resource-limited contexts. in Uganda contended that older persons encounter signif- icant challenges in their caregiving role attributed to the high occurrence of poor health associated with advancing age, 4.1. Level of Care Burden. We found that the majority thus undermining their ability to optimally provide for (65.6%) of the caregivers experienced mild-to-moderate children in their care [31]. +e large number of caregivers burden, while 1.8% experienced severe burden. +is finding contrasts with that reported by Ochigbo et al. in Nigeria, aged≥40 years (44.2%) in the current study should therefore be concerning. Our findings, however, contrast with those where the majority (76.4%) of the caregivers had no or minimal burden and only 16.4% had mild-to-moderate reported by Robson in Zimbabwe [32] and Lindsey et al. in Botswana [33], where young girls bore a high burden of burden [28]. +e level of care burden as found in the current study also differs from that reported among adults caring for caregiving with untoward consequences. Furthermore, our results suggest a significant association between divorce and people living with HIV/AIDS in Southern India, where an increase in the level of care burden experienced. +is 27.8% and 10.0% had mild-to-moderate and severe levels of could be attributed to the role dynamics that these caregivers burden, respectively [5]. +e above variation could be at- have to play in addition to caring for the HIV-infected child, tributed to differences in patient types and study contexts. compounded by the fact that divorce is a stressor in itself. We believe that the widespread experience of care burden in Caregivers with an average monthly income of less than the context of our study could be attributed to the high level of poverty, illiteracy, and disruption of family support 250,000 Uganda shillings (approximately $67) significantly experienced a higher burden compared to those with an average systems and could have important implications on the care of HIV-infected children, including poor retention, poor monthly income of≥250,000 Shs, a finding that was also echoed by respondents in the qualitative study. +is finding corrob- adherence, and low viral load suppression. +ere were strong bearings of some specific items within orates with that reported by Seng et al., which showed a lower care burden among caregivers who had fewer financial prob- the ZBI tool on the level of care burden experienced by the lems [22]. While Rahmani et al. reported a contrary finding of study participants. +e highest scores were observed for the higher care burden among caregivers with perceived income questions “Do you feel your health has suffered because of adequacy [11], we believe the current finding may not be your involvement with your child?” (item 20), “Do you feel surprising, since caring for an HIV positive child requires fi- your child is dependent on you?” (item 8), and “Do you feel nancial resources to meet many of the child’s needs. +is is a that your child seems to expect you to take care of him/her as if you were the only one he/she could depend on?” (item 14). situation reported by Kipp et al. in the pre-scale-up of ART in Uganda where all caregivers reported a deterioration of their +is finding is similar to that previously reported by other authors [22, 29]. However, in contrast to previous reports, economicstatussincebecomingcaregivers,withoverhalf(59%) requesting direct financial assistance [34]. According to views the response to the question “Are you afraid of what the future holds for your child?” (item 7) generated a low score. from the qualitative arm of the study, financial constraints hindered access to basic needs such as food, clothing, and +is finding is uniquely important and suggests a high level medical care, attesting to reports by other authors that lack of of conviction of hope among the respondents, as also food is a significant predictor of caregiver burden among expressed by respondents in the in-depth interview (qual- caregivers of people affected with HIV/AIDS [35, 36]. itative finding) who accepted and confronted their situa- Furthermore, respondents caring for children who were tions, a factor shown to be important in handling the attending school significantly experienced lower levels of challenging situations of caregiving [30]. AIDS Research and Treatment 11 God for strength and hope, characterised by attending care burden than those caring for children who were not in school. While the reason for this is not immediately obvious, prayer sessions, reading the Bible, and believing that the disease will go away when they pray to God. we postulate that this could relate to the fact that, in this study, children who were not attending school were younger In this study, we also sought to investigate some more (median age �7 years [IQR 4–7]) than those in school unique ways of coping among the sampled study population (median age �9 years [IQR 7–9]) and therefore were more which were not suggested by the original subscales. We dependent on the caregiver. Furthermore, a higher pro- derived five coping factors from a principal component portion (36.4%) of children who were not attending school factor analysis of the F-COPES that best explained how the were reported to have been sickly compared to only 19.6% of population in the context of this study responds to the demands and burden of caregiving for children living with children who were already at school, which, coupled with the younger age, is likely to have increased the level of care HIV/AIDS. +ese factors could best be described as Internal Strength, Seeking Community Support, Information Seek- burden. +is finding was also corroborated by respondents in the qualitative arm of the study where caregivers ing or Gathering, Acceptance, and Psychosocial Support. +is finding has similarities with those reported among expressed difficulties caring for the children experiencing frequent illnesses and hospitalizations. various population groups and disease contexts [13, 41, 42], An important finding from the qualitative results with ingredients that can be considered as emotion- and highlighted the negative impact of stigma and discrimina- problem-focused. +ese factors more reliably explained tion on caregiving, in keeping with findings by Kalomo and coping among the study population as shown by the im- Liao in rural Namibia, where HIV stigma experienced by the provement in the overall Cronbach’s alpha coefficient from primary caregivers was associated with heightened caregiver 0.68 to 0.71 and the marked improvement in the subscale coefficients compared to the original subscales. burden [35]. Moore and Henry assert that intense stigma leads caregivers to feel overburdened by their caregiving +e first factor, Internal Strength, demonstrates that caregivers relied on the inherent strengths and resilience demands [37, 38]. In this study, stigma made it difficult for caregivers to give the child’s medications in the presence of within the family system to overcome the demands and burden of caregiving and presents a unique coping strategy other people, supporting a suggestion that intense HIV stigma often causes caregivers to keep their child’s illness a that is not demonstrated in the original factor subscale. A secret, in turn putting their child’s physical health at risk similar finding has previously been reported by Guada who [37]. +e finding of high levels of stigma and discrimination also contended that family interventions should emphasize a in our study is of great significance given the efforts put in by family’s sense of its inherent capabilities for managing stress the ministry of health and its HIV implementing partners in [13]. +is is an important finding on which programs can addressing the problem of stigma and discrimination and leverage to support caregivers and families to explore and use their inherent strengths, where possible, as a first line of should therefore call for more deliberate and bold change in approaches. coping. +e sampled population also coped by seeking com- munity support (the second factor), particularly from 4.3. Coping Strategies and Related Caregivers’ Sociodemo- neighbours, while also taking a passive approach by be- graphic Factors. Based on the original subscale, the three lieving that if they wait long, the problem will go away. coping strategies with the highest median scores were Conceptually, this approach is similar to the original Accepting Social Support, Seeking Spiritual Support, and F-COPES subscale of Acquire & Accept Help [25]. +e Reframing, a finding similar to that reported by Guada adoption of this strategy was significantly negatively cor- (2012) in a study among African American families with a related with the duration of the child’s care, implying that schizophrenic loved one [13]. By contrast, in a study among the longer the child takes in care, the lesser the caregivers parents of children with cancer in Shiraz, Southern Iran, sought community support. Results from the qualitative data Spiritual Support ranked highest, followed by Seeking Help, reaffirmed the role of this strategy in coping, where re- Reframing, Passive Appraisal, and Social Support [14]. spondents shared their problems with persons similarly While these studies all used the same tool (F-COPES), they caring for children with HIV as a way of receiving support. diverge on the disease spectrums studied. +e high extent of +is finding is of significance and demonstrates the im- use of social support among respondents in the current portance of involving family members and the community study as has also been reported by other authors [39, 40] is in care [43], which reemphasizes the need to address the not unexpected given the sociocultural contexts where ex- barriers of stigma, discrimination, and nondisclosure. +ese tended family and community systems form the basis of are barriers likely to hamper the beneficial roles of other children’s upbringing. Furthermore, the religious conviction family members and the community in coping. as found in this study is in keeping with that reported by +e third factor centerd on Seeking Information from Osafo et al. in a qualitative study in Uganda where spiri- others as a means of dealing with stressors, particularly from tuality with high rates of religiousness was noted as a way of friends and extended family members, in addition to seeking coping among caregivers [4]. +is finding also bodes well information and advice from persons in other families who with that found among caregivers of children with cancer in have faced the same or similar problems. +e use of this Iran [14] and is indeed in accord with the results of our coping strategy was significantly positively correlated with qualitative findings where caregivers expressed turning to being divorced or widowed but was less adopted as the 12 AIDS Research and Treatment caregiver drifts in the direction of being unemployed. ART: Antiretroviral therapy Programs should therefore support a proactive strategy of HIV: Human immunodeficiency virus providing useful information that aids coping, including LRRH: Lira Regional Referral Hospital. information that addresses stigma and discrimination. +e fourth factor was labelled as Acceptance, an emo- Data Availability tion-focused coping strategy that the family members utilize to cope [15, 42]. +is is an important coping strategy and +e datasets used and/or analysed during the current study therefore a uniquely important finding not previously are available from the corresponding author upon request. demonstrated in the original subscale. It has been argued that, by employing this strategy and accepting their difficult Ethical Approval situations, families are better placed to redefine stressful events to make them more manageable [15]. Similarly, +e study protocol was reviewed and cleared by the Insti- according to McCubbin et al., family members who use tutional Research and Ethics Committee of Gulu University acceptance do not necessarily view their situation as negative (GUREC-042-20). +e protocol was further cleared for but as a part of their everyday life, a fact which helps to collection of data in Uganda by the national research reg- reduce stress and improve the relationship with other family ulator, the Uganda National Council for Science and members [25]. Technology (RESCLEAR/01). Administrative clearance was +e last factor, labelled as Psychosocial Support, is con- obtained from the district and hospital administrations. ceptually similar to the original subscale of Acquiring Social Support and has previously been reported [41, 44]. We found a Consent positive correlation between average household income and the Written informed consent was obtained from all respon- use of psychosocial support as a major coping strategy. +is dents before participating in the study. finding contrasts with that reported by Eaton et al. in a study among family members of hospitalized psychiatric patients who Disclosure found no significant relationship between coping and the family’s socioeconomic status [15]. +is difference could be A preprint version of this manuscript has been submitted to methodological and/or due to disease factors, since different Research Square and is available online. +e content is solely diseases present unique challenges in caregiving. the responsibility of the authors and does not necessarily +is study has some limitations. One of the limitations is represent the official views of the National Institutes of the relatively small sample size, which is likely to limit its Health. external validity. However, this weakness was overcome by employing a mix-method design where findings from the Conflicts of Interest qualitative study reinforced the quantitative data. Further- more, being a cross-sectional study, it was not possible to +e authors declare that they have no conflicts of interest. establish any precise causal relationship between coping strategies, burden, and caregivers’ sociodemographic Authors’ Contributions factors. Lastly, the preprint version of this manuscript has been Ibrahim Mujjuzi, Paul Mutegeki, Sarah Nabuwufu, Ashim submitted to Research Square and is available online [45]. Wosukira, Fazirah Namata, and Patience Alayo conceptu- alized this work and participated in proposal writing and data collection. Sharon Bright Amanya and Richard Nyeko 5. Conclusions and Recommendations participated in proposal writing and data analysis and +is study shows that care burden is common among the drafted the manuscript together with Ibrahim Mujjuzi and caregivers of children living with HIV in the study context. Paul Mutegeki. All the authors read and approved the final Caregivers depend on both internal and external strengths for manuscript. coping with the burden of caregiving. We recommend that appropriate health and social policies should be directed by Acknowledgments programs supporting HIV care and treatment services to al- leviate the caregiver burden in this and similar populations. +e authors thank the children and their caregivers who Importantly, stakeholders involved in providing HIV/AIDS participated in this study. +e authors also acknowledge the care, treatment, and support should (i) integrate livelihoods support of the staff and management of the HIV Clinic of programs for families of children with HIV/AIDS and (ii) LRRH. +e authors would like to acknowledge the contri- strengthen the social support systems like the mother/father butions and support from the Health Professionals Edu- support groups as a means for psychosocial support and dealing cation Partnership Initiative-Transforming Ugandan with stigma and discrimination. Institutions Training Against HIV/AIDS Program (HEPI- TUITAH) project that made this research possible. In particular, the authors would like to thank the project ad- Abbreviations ministrator at Lira University, Mr. Barnabas Twesige. +e AIDS: Acquired immune deficiency syndrome research reported in this publication was supported by the AIDS Research and Treatment 13 [16] R. Twoy, M. Connolly, and J. M Novak, “Coping strategies Fogarty International Center (U.S. Department of State’s used by parents of children with autism,” Journal of the Office of the U.S. Global AIDS Coordinator and Health American Academy of Nurse Practitioners, vol. 19, pp. 251– Diplomacy [S/GAC] and the President’s Emergency Plan for 260, 2007. AIDS Relief [PEPFAR]) of the National Institutes of Health [17] M. Dada, N. O. Okewole, O. C. Ogun, and M. A. Bello- under Award no. R25TW011210. 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Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study

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Hindawi Publishing Corporation
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Copyright © 2021 Ibrahim Mujjuzi et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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10.1155/2021/6660337
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Abstract

Hindawi AIDS Research and Treatment Volume 2021, Article ID 6660337, 14 pages https://doi.org/10.1155/2021/6660337 Research Article Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study 1 1 1 1 1 Ibrahim Mujjuzi, Paul Mutegeki, Sarah Nabuwufu, Ashim Wosukira, Fazirah Namata, 1 2 3 Patience Alayo, Sharon Bright Amanya , and Richard Nyeko Lira University, P.O. Box 1035, Lira, Uganda Department of Microbiology and Immunology, Lira University, P.O. Box 1035, Lira, Uganda Department of Paediatrics and Child Health, Lira University, P.O. Box 1035, Lira, Uganda Correspondence should be addressed to Richard Nyeko; rnyeko2@gmail.com Received 12 December 2020; Revised 29 August 2021; Accepted 1 September 2021; Published 13 September 2021 Academic Editor: Jim Tartaglia Copyright © 2021 Ibrahim Mujjuzi et al. +is is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Background. Family caregivers provide the bulk of care to children living with HIV. +is places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. +is may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda. Methods. A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ARTclinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically. Results. +e majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. +e mean burden scores significantly differed by caregivers’ age (P � 0.017), marital status (P � 0.017), average monthly income (P � 0.035), and child’s school attendance (P � 0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, re- spectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child’s care. Conclusions. Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context. 7,500 were new HIV infections [2]. +e high burden of HIV 1. Introduction has resulted in both direct and indirect effects on the It is estimated that about 1.7 million of the over 37.9 million population in low- and middle-income countries, leading to people living with HIV globally in 2018 were children aged various social and economic challenges for an already below 15 years, the majority of whom are in sub-Saharan vulnerable group of people [3]. Although antiretroviral Africa [1]. In Uganda, the country with the fifth-highest drugs and treatments have burgeoned, the burden of prevalence in the region, up to 100,000 (7.1%) of the esti- caregiving has not changed [4]. Antiretroviral therapy mated 1.4 million people living with HIV in 2018 were (ART) has reduced morbidity and mortality among people children below the age of 15 years, of which an estimated living with HIV, including children, thus making HIV 2 AIDS Research and Treatment become a chronic disease [5]. Chronic diseases, and children under 15 years. +is site was selected because of its therefore HIV, not only affect the lives of those suffering high client load, in addition to serving clients referred from from the illness but also affect the lives of family members all ART clinics in the subregion, and therefore provides a who take care of them [6], with both positive and negative relatively good representative population. Paediatric HIV consequences. Providing chronic care to children living with services in Uganda and the study context are provided HIV/AIDS presents unique demands and burdens to fam- according to the national ART guidelines, revised in De- ilies and the entire healthcare system [7], often associated cember 2016 to include initiating all HIV-infected clients on with negative effects on caregivers [4, 8]. +e negative effect ARTregardless of age, clinical stage, and CD4 cell count, the of caregiving has been described as a caregiver burden [9] “test and treat” policy [19]. +e HIV services are provided and it encompasses the physical, social, emotional, and fi- free with support from PEPFAR funding and include but are nancial toll of providing care [4, 8]. According to Chandran not limited to HIV testing services, ART, prophylaxis for et al., caregiver burden refers to “the physical, emotional, opportunistic infections, adherence counselling and psy- and financial hardships associated with providing care to a chosocial supports, and routine clinical and laboratory monitoring. Paediatric HIV services are largely facility- diseased individual” [5]. In low resource settings, Uganda inclusive, care burden is often contributed to by high levels based, especially for younger children who are followed up of poverty, illiteracy, and disruption of family social support according to the national guidelines with an evaluation at 2 systems. Pieces of evidence suggest an increasing level of weeks after initiation of ART, every month for the next stress in caregiving and this requires adequate attention to several months, and every 3 months afterwards. During the understand and help reduce this stress [4, 10]. follow-up visits, standard medical care is provided to all Caregivers and, by extension, families have often persons on ART routinely or as and when required, in- struggled to cope with this burden through various ways, cluding counselling, pick-up of prescriptions (antiretroviral including concealment of the child’s health status, drawing drugs, cotrimoxazole, and other drugs), physician evalua- strength from their faith and belief in God, and reaching out tions, and laboratory testing (CD4 lymphocyte count and for support. +ese reactions to cope with stressful situations viral load). and the demands of caregiving can be adaptive or malad- aptive, where some caregivers adapt well, while others do not 2.2. Study Population. Our study comprised caregivers of [11, 12]. Failure by caregivers of children living with HIV to paediatric HIV/AIDS patients aged 2–12 years who re- appropriately cope can adversely affect care-related out- ceived ART services from a tertiary level facility and who comes, including poor retention in chronic HIV care and have spent at least 6 months caring for the child. +e poor adherence to ART, consequently contributing to low caregivers were drawn from the HIV care clinic at the viral load suppression among children. study site as they came in for their ARTappointments. In While several studies have been done to assess care the study context, caregivers of paediatric HIV, on whom burden and identify coping strategies among caregivers, the children depend for most of their support, comprise a these have majorly centered on adults and other debilitating mixed group of individuals but mainly the biological diseases such as psychiatric disorders, dementia, autism, and general HIV patients [13–18]. Little attention has been paid mothers of the children who are themselves HIV-infected and receiving HIV care and treatment. A significant to the care burden experienced by persons on whom chil- number of HIV-infected children are also cared for by dren living with HIV depend for onward lifelong support, either a sibling or other close relatives, occasioned by the and there is a paucity of data on the same in resource-limited high number of orphans resulting from the over two contexts like the current study setting. +e few studies that decades of insurgency in northern Uganda and the HIV focused on caregivers of children were largely qualitative and scourge itself. in contexts that differ from that of the current study setting [4]. +is study, therefore, assessed care burden and coping strategies among caregivers of paediatric HIV/AIDS patients 2.3. Sample Size Estimation in a resource-poor setting in northern Uganda. 2.3.1. Quantitative Data. +e method for estimating the 2. Methods sample size for cross-sectional studies [20] was used for this 2 2 study, based on the following formula: N � Z p (1 − P)/e , at 2.1. Study Design and Setting. We used a cross-sectional 95% level of confidence, with P � 8% [21] and allowable mixed-method design to collect quantitative and qualitative error (e) of 5%. +e estimated sample size of 113 was data during August 2020. +e study was conducted in the obtained. antiretroviral therapy (ART) clinic of Lira Regional Referral Hospital (LRRH), a tertiary care health facility in Lira dis- trict, northern Uganda. +e facility receives patients from over 9 districts in the subregion and beyond, with a 2.3.2. Qualitative Data. We interviewed 15 respondents for catchment population of about 2.3 million, offering a wide the qualitative data. +ese were conveniently selected for in- range of general and specialized curative, promotive, and depth interviews because of their depth of experience in preventive health services. To date, the facility has over caring for HIV-infected children, a process that was carried 34,000 clients enrolled on ART, about 500 of whom are on until saturation was reached. AIDS Research and Treatment 3 Questions on the in-depth interview guide included the 2.4. Sampling Criteria. We used a consecutive sampling technique to recruit study participants for quantitative data, respondent’s demographics, relationship with the child, experiences in caring for a child with HIV, burdens or while a purposive sampling technique was used to select respondents for the individual in-depth interviews. difficulties faced in caring for the child, ways of coping with the burden, and general views on caring for HIV-infected children. Probes depended on a respondent’s experiences 2.5. Data Collection Instruments. For quantitative data, we and clarity of their narratives. +e interviews were later used a standard 22-item Zarit Burden Interview (ZBI) tool translated and transcribed into the English language. [22] to assess caregivers’ perceived burden of providing care. +e questions focus on the caregiver’s health, psychological well-being, finance, social life, and interpersonal relation- 2.7. Data Management and Analysis ships that cause stress and strain. +e reliability of the ZBI 2.7.1. Quantitative Data. Completeness of data was ensured tool measured by Cronbach’s coefficient has been reported during data collection through daily reviews and taking to range from 0.77 to 0.94 [11, 22–24]. +e 22 items are corrective actions. Data were entered, cleaned, and analysed assessed on a 5-point Likert scale, ranging from 0 �“never” using Statistical Package for Social Sciences (SPSS) software to 4 �“nearly always.” Individual item scores are added up to (IBM SPSS Statistics for Windows, Version 23.0, Armonk, give a total score ranging from 0 to 88, with higher scores NY: IBM Corp.). Descriptive statistics were used to sum- indicating a higher perceived burden. +e cut-off points for marize the data obtained from the participants. Continuous the ZBI were as follows: 0–20 (little or no burden), 21–40 (mild-to-moderate burden), 41–60 (moderate-to-severe variables with approximately normal distribution were de- scribed using means (standard deviations), while no nor- burden), and 61–88 (severe burden). Besides, a standard 29- mally distributed variables were described using medians item Family Crisis Oriented Personal Evaluation Scale (F- (interquartile ranges). +e analysis of variance (ANOVA) COPES) was used to assess caregivers’ coping. +e F-COPES and independent t-tests were used to examine the differences has an internal consistency of 0.89 [15, 25] and is based on a in the mean burden scores regarding sociodemographic 5-point scale with scores ranging from 1 to 5, where characteristics. An exploratory factor analysis using prin- 1 �strongly disagree, 2 �moderately disagree, 3 �neither cipal component analysis with varimax rotation was used on agree nor disagree, 4 �moderately agree, and 5 �strongly the coping data to assess the empirical support of the original agree. +e five subscales designed in the F-COPES include scales applied to this sample of the population. Factor acquiring social support, reframing, seeking spiritual sup- analysis provides a preliminary analysis of how a scale port, mobilizing the family to acquire and accept help, and passive appraisal [25]. +e tools were used to collect soci- measures the concepts it is designed to measure [13]. +e scree test and the eigenvalues >1 rule and a factor loading of odemographic information, care burden, and coping at least 0.35 [26] were used to determine the number of strategies. factors. Factors with at least three items loaded on them were For the qualitative data, we developed an in-depth in- viewed as more psychometrically stable [27]. Internal terview guide in line with our study objectives to explore consistency was estimated using Cronbach’s α coefficient. caregivers’ perspectives and experiences of caring for HIV- Pearson correlation coefficient and multiple linear regres- infected children. sion analyses were used to assess the relationship between the coping scales and sociodemographic characteristics. 2.6. Data Collection Statistical significance was set at P<0.05. 2.6.1. Quantitative Data. Caregivers of paediatric HIV cli- ents who accessed ARTservices from LRRH were identified 2.7.2. Qualitative Data. +e qualitative data generated at the time of their appointment visit. Data were collected from the in-depth interviews were transcribed and from consenting participants using an interviewer-admin- analysed manually using content thematic analysis. +e istered questionnaire after explaining the purpose, research researchers read, coded, and agreed on the subthemes. procedure, and their rights as participants in the study. +e +e analysis focused on the responses around the ex- interview took approximately 20–25 minutes. periences and challenges of providing caregiving and the strategies often adopted by the respondents in trying to overcome these challenges or burdens of caregiving. +is 2.6.2. Qualitative Data. Individuals identified for the first step in the analysis was aimed at carefully reading the qualitative study were approached and those who agreed to transcripts and noting down initial views about each participate were interviewed after giving informed consent. participant, a within-case analysis in each transcript and +e interview was conducted in a convenient private room noting themes. +e next step involved comparing the within the ARTclinic to explore the care burden and coping themes from one case to the other across all the tran- approaches of the caregivers. It was moderated by the re- scripts and noting themes that were relevant to the re- searchers using a semistructured in-depth interview guide search questions. Ultimately, relevant compelling quotes and audio-recorded, in addition to taking notes. Each ses- which represented lucid elements of our working themes sion took about 30 minutes and was conducted in the local were selected. language which was best understood by the respondents. 4 AIDS Research and Treatment Table 1: Sociodemographic characteristics of study participants. 3. Results Characteristics Frequency, N (%) 3.1. Quantitative Results Caregivers characteristics Gender 3.1.1. Sociodemographic Characteristics of Study Participants. Male 28 (24.8) +e majority, 75.2% (85), of the 113 respondents were fe- Female 85 (75.2) males, with a median age of 38 years (IQR 12) and an age Age (years) range of 18–74 years. More than one-half of the caregivers, 18–29 21 (18.6) 69.0% (78), were biological parents of the child, while 31.0% 30–39 42 (37.2) (35) were other relations that typically comprised other ≥40 50 (44.2) extended family members (Table 1). At least 16.8% (19) of Relation to child the respondents were caring for two or more children living Mother 58 (51.3) with HIV. +e median age of the children was 9 years (IQR Father 20 (17.7) 4), over half of whom were females (55.8%), and at least Others 35 (31.0) Highest level of education 15.0% (17) had been in care for over 10 years (median 5 years Primary 65 (57.5) [IQR 4]). Up to 21.2% (24) of the children had been generally Secondary 28 (23.0) sickly despite ART. +e rest of the sociodemographic Tertiary 11 (9.7) characteristics are as shown in Table 1. No formal education 11 (9.7) Occupation Formal employment 12 (10.6) 3.1.2. Descriptive Statistics (Mean/SD) of Individual Care Self-employed 44 (38.9) Burden Scores. Table 2 summarizes the individual mean care Peasant farmer 38 (33.6) burden scores related to each of the 22-item ZBI care burden Unemployed 19 (16.8) questions. +e mean scores for the individual questions Marital status ranged from a low of 0.53 for the question “Do you feel Single 54 (47.8) uncomfortable about having friends because of your child?” Married 30 (26.5) to a high of 3.58 for the question “Do you feel you should be Divorced 10 (8.8) doing more for your child?” Moreover notable was the low Widowed 19 (16.8) mean score relating to the question “Do you feel that you Children living with HIV/AIDS in household don’t have enough money to take care of your child in 1 child 94 (83.2) 2 and more 19 (16.8) addition to the rest of your expenses?” (mean �1.23). Average monthly household income Similarly, the mean score on the question “Do you feel that ˂250,000 46 (40.7) your child negatively affects your relationships with other ≥250,000 67 (59.3) family members or friends?” was low (mean �0.89). +e low Child characteristics ranking of the question “Do you feel you have lost control of Gender your life since your child’s illness? (mean �0.64) demon- Male 50 (44.2) strates a type of resilience and shows that the “burn-out Female 63 (55.8) syndrome” has not yet cropped up among the caregivers in Age (years) the study context (Table 2). 5 and below 17 (15.0) Above 5 96 (85.0) School attendance 3.1.3. Level of Care Burden. +e overall mean burden score Yes 102 (90.3) was 36.9±9.7, where the respondents experienced one form No 11 (9.7) of care burden or the other to varying extents. +e majority Duration in HIV care of the caregivers, 65.6% (74), had mild-to-moderate care <10 years 96 (85.0) burden, 30.1% (34) had a moderate-to-severe burden, 2.7% ≥10 years 17 (15.0) (3) had little or no burden, and only 1.8% (2) had severe Health condition since ART burden (Figure 1). Healthy 89 (78.8) Sickly 24 (21.2) 3.1.4. 7e Relation between Care Burden and Caregivers’ Sociodemographic Characteristics. +e mean care burden statistically significant, P � 0.039. +e burden scores relating score was significantly higher among caregivers in the age to the rest of the caregiver and child sociodemographic range of 30–39 years (39.07±10.70, P � 0.017), caregivers characteristics are as shown in Table 3. who were divorced (44.00±14.46, P � 0.017), and those with an average monthly household income less than $67 or approximately $2 a day (39.24±10.14, P � 0.035) (Table 3). 3.1.5. Descriptive Statistics of Coping Strategies Assessment. Likewise, respondents caring for HIV positive children who Table 4 summarizes the mean scores for each item in the 29- were attending school had lower burden scores item F-COPES used to assess coping strategies among the respondents. +is ranged from a low of 1.77 for the strategy (36.30±9.30) compared to those caring for children who were not in school (42.64±11.99), and this difference was relating to item C26 “seeking advice from a minister” to a AIDS Research and Treatment 5 Table 2: Mean scores of caregivers’ responses to care burden assessment questions (n �113). Item ZBI care burden questions Mean SD Variance no. B1 Do you feel that your child needs more help than he/she needs? 3.07 1.03 1.07 B2 Do you feel that you don’t have enough time for yourself because of the child? 1.48 1.30 1.70 B3 Do you feel stressed caring for the child and trying to meet other responsibilities for your family or work? 2.43 1.32 1.75 B4 Do you feel embarrassed about your child’s condition? 0.75 1.17 1.37 B5 Do you feel angry when you are with your child? 0.76 1.10 1.20 B6 Do you feel that your child negatively affects your relationships with other family members or friends? 0.89 1.29 1.67 B7 Are you afraid of what the future holds for your child? 1.88 1.52 2.31 B8 Do you feel your child is dependent on you? 3.46 0.79 0.63 B9 Do you feel strained when you are around your child? 0.55 1.04 1.10 B10 Do you feel your health has suffered because of your involvement with your child? 1.33 1.31 1.72 B11 Do you feel that you don’t have as much privacy as you would like because of your child? 0.86 1.22 1.50 B12 Do you feel that your social life has suffered because you are caring for your child? 0.59 1.13 1.28 B13 Do you feel uncomfortable about having friends because of your child? 0.53 1.17 1.36 Do you feel that your child seems to expect you to take care of him/her as if you were the only one he/she B14 3.38 0.96 0.92 could depend on? Do you feel that you don’t have enough money to take care of your child in addition to the rest of your B15 1.23 1.45 2.09 expenses? B16 Do you feel that you will be unable to take care of your child much longer? 1.52 1.43 2.06 B17 Do you feel you have lost control of your life since your child’s illness? 0.64 1.09 1.18 B18 Do you wish you could leave the care of your child to someone else? 1.12 1.36 1.84 B19 Do you feel uncertain about what to do about your child? 1.34 1.41 1.98 B20 Do you feel you should be doing more for your child? 3.58 0.69 0.48 B21 Do you feel you could do a better job of caring for your child? 3.02 1.16 1.34 B22 Overall, how burdened do you feel? 2.50 1.23 1.52 SD: standard deviation. the Cronbach’s alpha estimate, was 0.68, while the interitem 65.6% coefficients (Cronbach’s α) for each of the original five subscales were Acquiring SocialSupport (0.69), Reframing(0.74), Seeking Spiritual Support (0.09), Acquire & Accept Help (0.40), and Passive Appraisal (0.48). 30.1% 3.1.6. Relation of Coping Strategies with Caregivers’ Socio- demographic Characteristics. A principal component factor 2.7% 1.8% analysis with varimax rotation was performed on the coping data to assess the experiential support for the original five Little or No burden Mild-mod burden Mod-Severe burden Severe burden (score (score 0-20) (score 21-40) (score 41-60) 61-88) scales applied to the current sample population. Using an Number 374 342 eigenvalue of >1.0 as the criterion resulted in 10 factors Figure 1: Level of care burden experienced by caregivers. being extracted from the entire pool of items. However, based on the original five-factor scale and given the marked drop in the percentage of variance explained by the sixth factor on the scree plot, a five-factor solution was accepted as high of 4.99 relating to item C29 “having faith in God” as a coping strategy. A mean score per item of greater than 3.0 the best one and was used for the exploratory factor analysis. +ese explained 47.3% of the total variance in the 29-item indicated that the item was a support component strongly used by the respondents (Table 4), implying, therefore, that F-COPES as applied to the current study population. +e new explanatory factors could be categorized as follows: there was a good range of coping options adopted by the caregivers who participated in this study, given that 22 out of Factor 1: Internal Strength (6 items: 3, 7, 11, 12, 13, and 21), accounting for 13.9% of the variance; Factor 2: Seeking 29 options had an individual mean score of ≥3.0. Furthermore, as shown in Figure 2, the respondents used Community Support (4 items: 8, 10, 27, and 28), accounting the original five subscales as coping strategies to varying extents. for 11.6% of the variance; Factor 3: Information Seeking (7 Acquiring social support was the strongest support system and items: 1, 2, 4, 5, 16, 19, and 24), accounting for 8.9% of the ranked highest (median � 4.2) in the extent of use, followed by variance; Factor 4: Acceptance (4 items: 15, 22, 23, and 25), accounting for 6.9% of the variance; and Factor 5: Psy- seeking spiritual support (median � 4.0) as the next highly ranked support system, while acquiring and accepting help chosocial Support (4 items: 6, 9, 20, and 26), accounting for 6.0% of the variance. Each item’s loading on the five (median � 2.8) was the weakest coping strategy (Figure 2). +e internal consistency of the scale for this study, as indicated by extracted factors is shown in Table 5. +e Cronbach’s alpha 6 AIDS Research and Treatment Table 3: Care burden scores and sociodemographic characteristics difficulties occur unexpectedly” (item 18), and “having faith of caregivers of HIV-infected children in northern Uganda. in God” (item 29). Variables n Mean±SD Statistics P value Caregivers characteristics 3.1.7. 7e Relationship between Coping Strategies and Soci- Gender a odemographic Characteristics. Table 6 shows the correlation Male 28 34.54±8.51 1.51 0.135 and multivariate linear regression beta coefficients of the Female 85 37.71±10.00 relationship between the extracted coping subscales and Age (years) respondents’ sociodemographic characteristics. Marital 18–29 21 31.76±8.73 4.26 0.017 status was positively correlated with Information Seeking, 30–39 42 39.07±10.70 ≥40 50 37.28±8.56 implying that the use of information-seeking becomes more Relation to child frequent as the marital status changes from “single” to Mother 58 37.76±10.14 0.62 0.541 “widowed.” Likewise, the level of monthly income showed a Father 20 35.00±9.29 positive relationship with the Psychosocial Support subscale, Others 35 36.63±9.31 indicating that caregivers with higher income used more Highest level of education psychosocial support for coping. +ere was a negative Primary 65 37.45±9.48 1.23 0.304 correlation between occupation and Information Seeking, Secondary 26 37.35±9.04 implying that caregivers less frequently used information- Tertiary 11 31.64±12.81 seeking strategies as their occupation status tends towards No formal education 11 38.09±8.89 being unemployed. Caregivers used less of the strategy of Occupation Formal employment 12 38.83±13.81 0.46 0.710 Seeking Community Support the longer the child remained Self-employed 44 37.73±10.72 in care. Peasant farmer 38 35.92±7.55 Unemployed 19 35.84±8.44 Marital status 3.2. Qualitative Results b ∗ Single 54 34.48±8.32 3.53 0.017 Married 30 38.87±8.62 3.2.1. Care Burden. In this study, we sought to address two Divorced 10 44.00±14.46 major research questions: care burden and the coping Widowed 19 37.05±10.34 strategies among caregivers of paediatric HIV/AIDS pa- Children living with HIV/AIDS in HH tients. From the qualitative analysis, the following themes 1 child 94 36.23±9.90 −1.68 0.095 emerged as having major bearings on care burden: financial, 2 or more 19 40.32±8.13 psychosocial, health facility-related, and child health-related Average monthly household income ∗ burdens. ˂250, 000 46 39.24±10.14 2.14 0.035 ≥250, 000 67 35.33±9.15 (1) Financial Burden. Financial constraints were variously Child characterises expressed as a key burden by nearly all the caregivers. +is Age (years) is related mainly to the inability to provide for the basic 5 and below 17 35.88±10.00 −0.48 0.635 Above 5 96 37.10±9.70 family and the child’s needs in terms of feeding, clothing, School attendance shelter, and education, often forcing the caregivers to do a ∗ Yes 102 36.30±9.30 −2.09 0.039 casual labour, described as “odd jobs,” to sustain the No 11 42.64±11.99 family needs. +is meant that meeting the family and the Duration in HIV care child’s other needs would sometimes take priority over <10 years 96 37.03±9.96 0.29 0.774 the visits to the health facility for the child’s related ≥10 years 17 36.29±8.40 medications. Caregivers lacked the time and the means of Health condition since ART meeting transport costs to take their children to the Healthy 89 36.13±9.74 −1.67 0.098 clinic. +is was a major barrier as exemplified by state- Sickly 24 39.83±9.22 a b ments from some of the respondents who asserted the Independent t-test (df �1); ANOVA (F); P value is significant; following: HH �household. “...it is hard taking care of him daily because he would love to eat nice things like meat, fish. Sometimes he sees those estimates for the five extracted factors were higher than nice things from neighbours and it is usually not affordable those for the original subscales and ranged from 0.51 for the for me...I also have to work hard weeding people’s gardens Psychosocial Support subscale to 0.80 for the Internal to take care of the children and sometimes I am not paid on Strength subscale. +e overall Cronbach’s α coefficient for time,” said a 54-year-old grandmother. the factors loaded (25 items) was 0.71. Four items of the original 29-item F-COPES “dropped out” by not loading on “...at times, she refuses to take her medication because I any factor greater than 0.35. +ese were “attending church have not been able to afford to buy for her good food such as services” (item 14), “knowing luck plays a big part in how “mukene”(silverfish) and others...,” said a 29-year-old well we can solve family problems” (item 17), “accepting that mother. AIDS Research and Treatment 7 Table 4: Descriptive statistics of caregivers’ responses to the coping strategy questions (n �113). Item no. Item Mean SD Variance C1 Sharing our difficulties with relatives 4.13 1.36 1.85 C2 Seeking encouragement and support from friends 4.12 1.29 1.67 C3 Knowing we have the power to solve major problems 2.80 1.55 2.41 Seeking information and advice from persons in other families who have faced the same or similar C4 4.13 1.27 1.62 problems. C5 Seeking advice from relatives (grandparents, etc.) 4.14 1.24 1.53 C6 Seeking assistance from community agencies and programs designed to help families in our situation 2.01 1.47 2.17 C7 Knowing we have the strength within our family to solve our problems 2.74 1.51 2.28 C8 Receiving gifts and favours from neighbours 3.15 1.64 2.70 C9 Seeking information and advice from the family doctor 2.47 1.68 2.81 C10 Asking neighbours for favours and assistance 3.23 1.62 2.61 C11 Facing the problem head-on and trying to get the solution right away 3.71 1.55 2.41 C12 Watching T.V. 2.40 1.46 2.12 C13 Showing that we are strong 3.00 1.67 2.80 C14 Attending church services 4.91 0.34 0.12 C15 Accepting stressful events as a fact of life 4.46 1.04 1.07 C16 Sharing concerns with close friends 4.47 0.99 0.98 C17 Knowing luck plays a big part in how well we can solve family problems 1.81 1.17 1.37 C18 Accepting that difficulties occur unexpectedly 4.58 0.74 0.55 C19 Doing things with relatives (get-togethers, dinners, etc.) 4.34 1.09 1.19 C20 Seeking professional counselling and help for family difficulties 3.47 1.64 2.70 C21 Believing we can handle our problems 3.12 1.57 2.47 C22 Participating in church activities 4.80 0.70 0.49 C23 Defining the family problem more positively so that we do not become too discouraged 4.01 0.94 0.88 C24 Asking relatives how they feel about the problems we face 3.93 1.15 1.32 C25 Feeling that no matter what we do to prepare, we will have difficulty handling problems. 3.95 1.03 1.05 C26 Seeking advice from a minister 1.77 1.24 1.54 C27 Believing if we wait long enough, the problem will go away 3.91 1.31 1.71 C28 Sharing problems with neighbours 3.90 1.45 2.11 C29 Having faith in God 4.99 0.09 0.01 SD: standard deviation. they could not give their children the drugs in the presence Passive of their neighbours and friends. A 36-year-old caregiver taking care of an orphaned HIV- Accept Help 2.8 infected child said: Spiritual 4 “...the neighbours also fear me because they think I also Reframing 3.6 have HIV/AIDS. I also had fears that caring for this child will lead me into contracting it (HIV/AIDS).” Social 4.2 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 Disclosure of the child’s and/or the caregiver’s HIV Median Score status was another challenge expressed by the caregivers as presenting a huge psychological burden, since the children Figure 2: Extent of caregivers’ usage of the F-COPES subscale have often questioned why they needed to take the drugs support system. daily while other children/siblings did not. Lack of disclo- sure also resulted in various hurdles in caregiving, including “...I do odd jobs to take care of the child and as I am old, it is poor adherence: hard for me,” said a 44-year-old grandmother. “...it was also hard telling the child that he is positive and it (2) Psychosocial Burden. Most responses related to is hard making him adhere to his drugs since he doesn’t see psychosocial burden rotated around stigmatization, dis- his friends taking drugs,” asserted a 57-year-old male crimination, and disclosure of the child’s status. Caregivers caregiver. expressed being stigmatized and discriminated against be- cause of their child’s HIV status, mainly from within the Also related was the effect of parenting on care burden, community where they live. For some caregivers, this which was highlighted by some respondents as exemplified hindered their ability to care for the child effectively, since by the following statement: 8 AIDS Research and Treatment Table 5: Five-factor loading of items in the coping strategy (F-COPES) assessment scale (n �113). Factor loadings F-COPES items 1 2 3 4 5 C1 Sharing our difficulties with relatives 0.102 −0.130 0.730 0.071 −0.016 C2 Seeking encouragement and support from friends 0.145 0.235 0.484 −0.342 −0.299 C3 Knowing we have the power to solve major problems 0.742 −0.009 −0.046 0.099 0.088 Seeking information and advice from persons in other families who have faced the same or C4 0.129 0.272 0.426 −0.148 0.063 similar problems C5 Seeking advice from relatives (grandparents, etc.) 0.020 −0.129 0.671 0.177 0.185 Seeking assistance from community agencies and programs designed to help families in C6 0.084 −0.091 0.196 −0.142 0.442 our situation C7 Knowing we have the strength within our family to solve our problems 0.812 0.033 −0.126 0.052 0.077 C8 Receiving gifts and favours from neighbours 0.175 0.831 0.026 0.016 0.092 C9 Seeking information and advice from the family doctor 0.265 0.100 0.094 −0.109 0.548 C10 Asking neighbours for favours and assistance 0.017 0.859 0.082 0.083 0.048 C11 Facing the problem head-on and trying to get the solution right away 0.497 0.409 0.089 0.230 0.034 C12 Watching T.V. 0.643 −0.017 0.322 −0.037 −0.066 C13 Showing that we are strong 0.737 −0.059 0.137 0.334 −0.226 C14 Attending church services 0.078 −0.022 −0.127 −0.266 0.069 C15 Accepting stressful events as a fact of life −0.083 0.305 −0.063 0.418 −0.580 C16 Sharing concerns with close friends −0.215 0.305 0.541 −0.197 −0.277 C17 Knowing luck plays a big part in how well we can solve family problems −0.120 −0.085 −0.107 −0.713 0.145 C18 Accepting that difficulties occur unexpectedly −0.007 0.245 0.065 0.120 −0.717 C19 Doing things with relatives (get-togethers, dinners, etc.) 0.216 0.143 0.535 0.142 0.111 C20 Seeking professional counselling and help for family difficulties −0.104 0.074 0.017 −0.125 0.551 C21 Believing we can handle our problems 0.672 −0.075 0.049 −0.120 0.072 C22 Participating in church activities −0.003 −0.168 0.199 0.454 0.029 C23 Defining the family problem more positively so that we do not become too discouraged 0.378 0.120 −0.051 0.632 −0.103 C24 Asking relatives how they feel about the problems we face −0.135 0.141 0.526 0.244 0.010 C25 Feeling that no matter what we do to prepare, we will have difficulty handling problems 0.105 0.170 −0.115 0.592 −0.025 C26 Seeking advice from a minister −0.062 0.110 −0.103 0.271 0.526 C27 Believing if we wait long enough, the problem will go away −0.220 0.480 −0.046 0.311 −0.107 C28 Sharing problems with neighbours −0.251 0.614 0.272 −0.025 −0.216 C29 Having faith in God 0.183 −0.089 0.036 −0.089 −0.214 Table 6: Correlation coefficients and standardized beta weights between the five coping subscales and caregiver and child sociodemographic characteristics (n �113). Factor 1 Factor 2 Factor 3 Factor 4 Factor 5 R b r b r b r b r b Gender 0.052 −0.101 −0.115 −0.034 −0.128 −0.236 0.017 −0.033 −0.149 −0.103 Age −0.118 −0.129 0.055 0.085 0.105 −0.021 0.041 0.049 −0.036 0.029 Relation −0.103 −0.024 −0.103 −0.095 0.061 0.063 −0.025 −0.050 −0.009 −0.040 Education 0.044 −0.039 −0.180 −0.031 0.098 0.125 0.025 0.025 0.158 0.063 ∗∗ ∗ Marital status 0.155 0.160 −0.152 −0.117 0.258 0.285 −0.029 −0.103 −0.020 0.000 ∗∗ ∗ ∗ ∗ Occupation −0.311 −0.256 0.176 0.069 −0.223 −0.196 0.035 −0.003 −0.129 −0.114 ∗∗ ∗ Income 0.047 0.054 −0.149 −0.153 −0.175 −0.202 0.003 0.015 0.360 0.314 No. of HIV+ children −0.055 0.003 0.152 0.209 0.029 0.028 0.125 0.124 −0.046 0.098 ∗ ∗ Child’s age −0.145 −0.262 −0.054 0.128 0.073 0.037 −0.172 −0.264 0.083 0.024 Schooling 0.084 0.058 −0.014 −0.049 0.092 0.084 −0.079 −0.105 −0.232 −0.143 ∗∗ ∗ Duration in care 0.098 0.220 −0.254 −0.295 0.079 0.003 0.003 0.145 0.034 0.015 Child’s health 0.091 0.036 −0.113 −0.058 −0.009 −0.070 −0.037 −0.029 0.061 0.080 Adj R 0.075 0.075 0.113 −0.042 0.082 Factor 1: Internal Strength; Factor 2: Seeking Community Support; Factor 3: Information Seeking; Factor 4: Acceptance; Factor 5: Psychosocial Support. ∗ ∗∗ P<0.05; P<0.01; r �Pearson’s coefficients; b �standardized beta coefficients. AIDS Research and Treatment 9 “. . .and it is hard making him adhere to his drugs since he “...the most painful of my experiences was the loss of this child’s mother. From then, I found it very difficult to give doesn’t see his friends taking...,” commented a 57-year-old father. the medication to the child, defaulting medication time...,” said a 36-year-old female caregiver of an orphaned HIV- infected child. 3.2.2. Coping Strategies. From the analysis of the coping (3) Healthcare-Related Burden. Caregivers highlighted strategies, the following themes emerged as the most common strategies used by the caregivers in the study various healthcare-related components as factors contrib- uting to deterrent and burden in caring for the HIV-infected context: social support, spiritual support, and acceptance. child, especially as far as health facility appointment visits were concerned. +e long waiting hours in the health facility (1) Social Support. Findings from the qualitative arm re- garding how respondents coped seem to support the results on appointment dates and the clashing of the child’s and the from the quantitative study. Sharing the problems faced by caregiver’s appointment dates for some caregivers who are other friends caring for HIV-infected children (social sup- receiving care from different health facilities were reported port) was a theme that emerged as one of the commonly to be too burdensome, in addition to the prohibitive transport costs. +e following quotes exemplify such used coping strategies by the caregivers. +is was exem- plified by the following expressions: concerns: “...a friend of mine was almost giving up on caring for her “. . .the child picks drugs here from Lira regional referral and sometimes the dates for picking his drugs clashes with child, I said to her, now that you know your child is suf- fering from HIV/AIDs, don’t let her die, take care of her and mine in Otuke health centre,” said a 57-year-old HIV- positive caregiver. you get blessings, and now the child is 8 years old and healthy...,” said a 22-year-old mother. “...lack of transport money to come to the clinic on ap- “...It was only one day that I and some other people caring pointment date sometimes make us miss picking drugs on time and the child misses some doses,” commented a 37- for children living with HIV/AIDs underwent a training conducted by LUCITA in caring for these children, so this year-old mother. gave me the courage to continue caring for this child,” said a 46-year-old male caregiver. (4) Child’s Health-Related Burden. For some caregivers, constant sicknesses of the HIV-infected children under their (2) Spiritual Support. Spiritual support also emerged as care were reported to be challenging, since this necessitated one of the common strategies used by the caregivers to cope frequent visits to the health facilities for medications: with the burden of caregiving. A number of the respondents expressed attending prayer sessions, reading the Bible, and “I have been suffering from nursing him in the hospital considering that he is always ill especially when he had surrendering themselves to God as a way of getting relief from the burden of caregiving (spiritual support): TB...,” stated a 37-year-old mother. “....I am a widow and now acting as a mother as well as a “I have completely surrendered these children and myself to father. 7erefore, I always find it very difficult to give God. Without God, I wouldn’t have persevered all this long proper care to this child and other children as well... getting together with these children. 7erefore, I put God first and what to eat is always a challenge and at times whenever this ART medication second...,” one of the respondents child is admitted to the hospital, we stay there hungry since asserted. we lack what to eat,” lamented a 41-year-old mother of six. Medication time was reported by most of the caregivers (3) Acceptance. Most caregivers expressed the fact that ac- as a challenging and burdensome task, given their fixed ceptance of the child’s HIV status and the responsibility of schedules which should be administered or supervised by the caregiving did give them the strength and courage to cope caregivers, especially for younger children. +is was reported with the challenges they encountered. +is was exemplified to result, sometimes, in the medication being administered by various statements as follows: to the children late. Likewise, defaulting adherence was reported by some caregivers as a big challenge because most “...we should continue being positive while caring for these children intentionally do not want to take their drugs, since children because it wasn’t their will to be in this condition, they feel they are not sick and their friends are not taking the to be born with HIV/AIDs. Let us look at them as if they are drugs: part of us, let us treat them equally with other children, and give them what other children also have,” said a 43-year- “...the most painful of my experiences was the loss of this old female caregiver. child’s mother. From then, I found it very difficult to give “...I advise other mothers to take care of their children with the medication to the child, defaulting medication time. . .,” one heart and to also love them a lot. I advise other parents said a 36-year-old female caregiver. 10 AIDS Research and Treatment +ere was, however, a notably low mean score relating to not to abandon their children who are on ARVs,” said a 23- year-old mother. the question “Do you feel that you don’t have enough money to take care of your child in addition to the rest of your “My advice to other people caring for children living with expenses?” (mean �1.23), which was not in tandem with the HIV is that they should show them, love, be close to them expressions from the qualitative study where most of the and guide them when taking their medications and other respondents highlighted financial constraints as a major information from the clinic concerning their health status, burden in caregiving. +is is astounding and could partially and give them food,” commented a 36-year-old mother. be explained by the fact that respondents who participated in the in-depth interviews had “experienced it all in caring for 4. Discussion an HIV-infected child” and reflects the role of exploratory studies in providing more perspectives to a context. +ere is a paucity of literature on caregiving and its asso- ciated burden among family caregivers of children living with HIV in low-resource settings. Consequently, there is a 4.2. Factors Associated with Care Burden. +e burden of poor understanding of the care burden and how individuals caregiving was significantly influenced by certain caregivers’ and families respond to such a demand for chronic care. +is sociodemographic factors. Our results showed that care- study investigated the care burden among caregivers of HIV- givers aged 30–39 years experienced more burden than those infected children in a low-resource context and how the in other age categories, which closely mirror those reported respondent population coped with the demands and the in a study by Rahmani et al. among caregivers of schizo- burden of caregiving. +e study thus offers new insights and phrenic patients in Iran [11], suggesting a tendency to higher understanding of caregiver burden and coping strategies for burden at an older age. Rutakumwa et al. in a previous study paediatric HIV in resource-limited contexts. in Uganda contended that older persons encounter signif- icant challenges in their caregiving role attributed to the high occurrence of poor health associated with advancing age, 4.1. Level of Care Burden. We found that the majority thus undermining their ability to optimally provide for (65.6%) of the caregivers experienced mild-to-moderate children in their care [31]. +e large number of caregivers burden, while 1.8% experienced severe burden. +is finding contrasts with that reported by Ochigbo et al. in Nigeria, aged≥40 years (44.2%) in the current study should therefore be concerning. Our findings, however, contrast with those where the majority (76.4%) of the caregivers had no or minimal burden and only 16.4% had mild-to-moderate reported by Robson in Zimbabwe [32] and Lindsey et al. in Botswana [33], where young girls bore a high burden of burden [28]. +e level of care burden as found in the current study also differs from that reported among adults caring for caregiving with untoward consequences. Furthermore, our results suggest a significant association between divorce and people living with HIV/AIDS in Southern India, where an increase in the level of care burden experienced. +is 27.8% and 10.0% had mild-to-moderate and severe levels of could be attributed to the role dynamics that these caregivers burden, respectively [5]. +e above variation could be at- have to play in addition to caring for the HIV-infected child, tributed to differences in patient types and study contexts. compounded by the fact that divorce is a stressor in itself. We believe that the widespread experience of care burden in Caregivers with an average monthly income of less than the context of our study could be attributed to the high level of poverty, illiteracy, and disruption of family support 250,000 Uganda shillings (approximately $67) significantly experienced a higher burden compared to those with an average systems and could have important implications on the care of HIV-infected children, including poor retention, poor monthly income of≥250,000 Shs, a finding that was also echoed by respondents in the qualitative study. +is finding corrob- adherence, and low viral load suppression. +ere were strong bearings of some specific items within orates with that reported by Seng et al., which showed a lower care burden among caregivers who had fewer financial prob- the ZBI tool on the level of care burden experienced by the lems [22]. While Rahmani et al. reported a contrary finding of study participants. +e highest scores were observed for the higher care burden among caregivers with perceived income questions “Do you feel your health has suffered because of adequacy [11], we believe the current finding may not be your involvement with your child?” (item 20), “Do you feel surprising, since caring for an HIV positive child requires fi- your child is dependent on you?” (item 8), and “Do you feel nancial resources to meet many of the child’s needs. +is is a that your child seems to expect you to take care of him/her as if you were the only one he/she could depend on?” (item 14). situation reported by Kipp et al. in the pre-scale-up of ART in Uganda where all caregivers reported a deterioration of their +is finding is similar to that previously reported by other authors [22, 29]. However, in contrast to previous reports, economicstatussincebecomingcaregivers,withoverhalf(59%) requesting direct financial assistance [34]. According to views the response to the question “Are you afraid of what the future holds for your child?” (item 7) generated a low score. from the qualitative arm of the study, financial constraints hindered access to basic needs such as food, clothing, and +is finding is uniquely important and suggests a high level medical care, attesting to reports by other authors that lack of of conviction of hope among the respondents, as also food is a significant predictor of caregiver burden among expressed by respondents in the in-depth interview (qual- caregivers of people affected with HIV/AIDS [35, 36]. itative finding) who accepted and confronted their situa- Furthermore, respondents caring for children who were tions, a factor shown to be important in handling the attending school significantly experienced lower levels of challenging situations of caregiving [30]. AIDS Research and Treatment 11 God for strength and hope, characterised by attending care burden than those caring for children who were not in school. While the reason for this is not immediately obvious, prayer sessions, reading the Bible, and believing that the disease will go away when they pray to God. we postulate that this could relate to the fact that, in this study, children who were not attending school were younger In this study, we also sought to investigate some more (median age �7 years [IQR 4–7]) than those in school unique ways of coping among the sampled study population (median age �9 years [IQR 7–9]) and therefore were more which were not suggested by the original subscales. We dependent on the caregiver. Furthermore, a higher pro- derived five coping factors from a principal component portion (36.4%) of children who were not attending school factor analysis of the F-COPES that best explained how the were reported to have been sickly compared to only 19.6% of population in the context of this study responds to the demands and burden of caregiving for children living with children who were already at school, which, coupled with the younger age, is likely to have increased the level of care HIV/AIDS. +ese factors could best be described as Internal Strength, Seeking Community Support, Information Seek- burden. +is finding was also corroborated by respondents in the qualitative arm of the study where caregivers ing or Gathering, Acceptance, and Psychosocial Support. +is finding has similarities with those reported among expressed difficulties caring for the children experiencing frequent illnesses and hospitalizations. various population groups and disease contexts [13, 41, 42], An important finding from the qualitative results with ingredients that can be considered as emotion- and highlighted the negative impact of stigma and discrimina- problem-focused. +ese factors more reliably explained tion on caregiving, in keeping with findings by Kalomo and coping among the study population as shown by the im- Liao in rural Namibia, where HIV stigma experienced by the provement in the overall Cronbach’s alpha coefficient from primary caregivers was associated with heightened caregiver 0.68 to 0.71 and the marked improvement in the subscale coefficients compared to the original subscales. burden [35]. Moore and Henry assert that intense stigma leads caregivers to feel overburdened by their caregiving +e first factor, Internal Strength, demonstrates that caregivers relied on the inherent strengths and resilience demands [37, 38]. In this study, stigma made it difficult for caregivers to give the child’s medications in the presence of within the family system to overcome the demands and burden of caregiving and presents a unique coping strategy other people, supporting a suggestion that intense HIV stigma often causes caregivers to keep their child’s illness a that is not demonstrated in the original factor subscale. A secret, in turn putting their child’s physical health at risk similar finding has previously been reported by Guada who [37]. +e finding of high levels of stigma and discrimination also contended that family interventions should emphasize a in our study is of great significance given the efforts put in by family’s sense of its inherent capabilities for managing stress the ministry of health and its HIV implementing partners in [13]. +is is an important finding on which programs can addressing the problem of stigma and discrimination and leverage to support caregivers and families to explore and use their inherent strengths, where possible, as a first line of should therefore call for more deliberate and bold change in approaches. coping. +e sampled population also coped by seeking com- munity support (the second factor), particularly from 4.3. Coping Strategies and Related Caregivers’ Sociodemo- neighbours, while also taking a passive approach by be- graphic Factors. Based on the original subscale, the three lieving that if they wait long, the problem will go away. coping strategies with the highest median scores were Conceptually, this approach is similar to the original Accepting Social Support, Seeking Spiritual Support, and F-COPES subscale of Acquire & Accept Help [25]. +e Reframing, a finding similar to that reported by Guada adoption of this strategy was significantly negatively cor- (2012) in a study among African American families with a related with the duration of the child’s care, implying that schizophrenic loved one [13]. By contrast, in a study among the longer the child takes in care, the lesser the caregivers parents of children with cancer in Shiraz, Southern Iran, sought community support. Results from the qualitative data Spiritual Support ranked highest, followed by Seeking Help, reaffirmed the role of this strategy in coping, where re- Reframing, Passive Appraisal, and Social Support [14]. spondents shared their problems with persons similarly While these studies all used the same tool (F-COPES), they caring for children with HIV as a way of receiving support. diverge on the disease spectrums studied. +e high extent of +is finding is of significance and demonstrates the im- use of social support among respondents in the current portance of involving family members and the community study as has also been reported by other authors [39, 40] is in care [43], which reemphasizes the need to address the not unexpected given the sociocultural contexts where ex- barriers of stigma, discrimination, and nondisclosure. +ese tended family and community systems form the basis of are barriers likely to hamper the beneficial roles of other children’s upbringing. Furthermore, the religious conviction family members and the community in coping. as found in this study is in keeping with that reported by +e third factor centerd on Seeking Information from Osafo et al. in a qualitative study in Uganda where spiri- others as a means of dealing with stressors, particularly from tuality with high rates of religiousness was noted as a way of friends and extended family members, in addition to seeking coping among caregivers [4]. +is finding also bodes well information and advice from persons in other families who with that found among caregivers of children with cancer in have faced the same or similar problems. +e use of this Iran [14] and is indeed in accord with the results of our coping strategy was significantly positively correlated with qualitative findings where caregivers expressed turning to being divorced or widowed but was less adopted as the 12 AIDS Research and Treatment caregiver drifts in the direction of being unemployed. ART: Antiretroviral therapy Programs should therefore support a proactive strategy of HIV: Human immunodeficiency virus providing useful information that aids coping, including LRRH: Lira Regional Referral Hospital. information that addresses stigma and discrimination. +e fourth factor was labelled as Acceptance, an emo- Data Availability tion-focused coping strategy that the family members utilize to cope [15, 42]. +is is an important coping strategy and +e datasets used and/or analysed during the current study therefore a uniquely important finding not previously are available from the corresponding author upon request. demonstrated in the original subscale. It has been argued that, by employing this strategy and accepting their difficult Ethical Approval situations, families are better placed to redefine stressful events to make them more manageable [15]. Similarly, +e study protocol was reviewed and cleared by the Insti- according to McCubbin et al., family members who use tutional Research and Ethics Committee of Gulu University acceptance do not necessarily view their situation as negative (GUREC-042-20). +e protocol was further cleared for but as a part of their everyday life, a fact which helps to collection of data in Uganda by the national research reg- reduce stress and improve the relationship with other family ulator, the Uganda National Council for Science and members [25]. Technology (RESCLEAR/01). Administrative clearance was +e last factor, labelled as Psychosocial Support, is con- obtained from the district and hospital administrations. ceptually similar to the original subscale of Acquiring Social Support and has previously been reported [41, 44]. We found a Consent positive correlation between average household income and the Written informed consent was obtained from all respon- use of psychosocial support as a major coping strategy. +is dents before participating in the study. finding contrasts with that reported by Eaton et al. in a study among family members of hospitalized psychiatric patients who Disclosure found no significant relationship between coping and the family’s socioeconomic status [15]. +is difference could be A preprint version of this manuscript has been submitted to methodological and/or due to disease factors, since different Research Square and is available online. +e content is solely diseases present unique challenges in caregiving. the responsibility of the authors and does not necessarily +is study has some limitations. One of the limitations is represent the official views of the National Institutes of the relatively small sample size, which is likely to limit its Health. external validity. However, this weakness was overcome by employing a mix-method design where findings from the Conflicts of Interest qualitative study reinforced the quantitative data. Further- more, being a cross-sectional study, it was not possible to +e authors declare that they have no conflicts of interest. establish any precise causal relationship between coping strategies, burden, and caregivers’ sociodemographic Authors’ Contributions factors. Lastly, the preprint version of this manuscript has been Ibrahim Mujjuzi, Paul Mutegeki, Sarah Nabuwufu, Ashim submitted to Research Square and is available online [45]. Wosukira, Fazirah Namata, and Patience Alayo conceptu- alized this work and participated in proposal writing and data collection. Sharon Bright Amanya and Richard Nyeko 5. Conclusions and Recommendations participated in proposal writing and data analysis and +is study shows that care burden is common among the drafted the manuscript together with Ibrahim Mujjuzi and caregivers of children living with HIV in the study context. Paul Mutegeki. All the authors read and approved the final Caregivers depend on both internal and external strengths for manuscript. coping with the burden of caregiving. We recommend that appropriate health and social policies should be directed by Acknowledgments programs supporting HIV care and treatment services to al- leviate the caregiver burden in this and similar populations. +e authors thank the children and their caregivers who Importantly, stakeholders involved in providing HIV/AIDS participated in this study. +e authors also acknowledge the care, treatment, and support should (i) integrate livelihoods support of the staff and management of the HIV Clinic of programs for families of children with HIV/AIDS and (ii) LRRH. +e authors would like to acknowledge the contri- strengthen the social support systems like the mother/father butions and support from the Health Professionals Edu- support groups as a means for psychosocial support and dealing cation Partnership Initiative-Transforming Ugandan with stigma and discrimination. Institutions Training Against HIV/AIDS Program (HEPI- TUITAH) project that made this research possible. 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Published: Sep 13, 2021

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