Economic burden and mental health of primary caregivers of perinatally HIV infected adolescents from Kilifi, Kenya

Katana, Patrick V; Abubakar, Amina; Nyongesa, Moses K.; Ssewanyana, Derrick; Mwangi, Paul; Newton, Charles R.; Jemutai, Julie

doi:10.21203/rs.2.17246/v2

Cited by 4 publications

(6 citation statements)

References 31 publications

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“…Similar to findings from other developing countries, having a professional job relative to subsistence farmers (many of whom are likely to be unemployed) was associated with improved overall HRQoL [54]. Arguably, individuals in formal employment are more likely to have higher educational level, enjoy higher wages and better working conditions and work environments compared to those without professional employment, thus less likely impacted by high caregiving burden (as may be the case for carers of adolescents living with HIV [49]), hence the improvement in their HRQoL. Better socioeconomic status has long been associated with good health outcomes in the literature [15].…”

Section: Discussionsupporting

confidence: 63%

“…Our observation could be further explained by the significant economic burden that caregivers of adolescents living with HIV are likely to face in their caregiving roles. Indeed, a recent cross-sectional study in the same study setting documented significant economic burden (especially for transportation and medication costs) among caregivers of perinatally HIV infected adolescents [49]. However, it could be that some of the adult carers are HIV uninfected and yet taking care of adolescents living with HIV or even vice-versa whereby a carer living with HIV is taking care of PHEU adolescent who poses fewer challenges, he/she (adolescent) is disease-free.…”

Section: Discussionmentioning

confidence: 99%

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Correlates of health-related quality of life in primary caregivers of perinatally HIV infected and HIV exposed uninfected adolescents at the Kenyan Coast

Mwangala

Ssewanyana

Mwangi

et al. 2022

Health Qual Life Outcomes

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Background Mothers and other primary caregivers play a crucial role in looking after perinatally HIV infected, and HIV exposed uninfected adolescents in sub-Saharan Africa. Day- to-day caregiving in the context of limited instrumental support and added biomedical risk (HIV seropositivity) may expose these caregivers to adverse states of health. Unfortunately, very few studies have examined their health-related quality of life (HRQoL). Our study documents the HRQoL profile, and associated factors in primary caregivers of perinatally HIV infected, perinatally HIV exposed but uninfected and HIV unexposed/uninfected adolescents aged 12–17 years at the Kenyan Coast. Methods This was a cross-sectional analysis of 485 primary caregivers: 195 of perinatally HIV infected adolescents, 128 of perinatally HIV exposed but uninfected adolescents and 162 of HIV unexposed/uninfected adolescents. All caregivers completed a self-report measure of HRQoL (having 8 subscales), depressive symptoms, and parenting stress. They also provided their sociodemographic information and that of the care recipients. We used one-way analysis of variance to assess statistical differences among the groups. Linear regression analyses were used to identify correlates of HRQoL. Results Overall, caregivers of HIV unexposed/uninfected adolescents reported significantly higher mean HRQoL scores than the other caregivers in the overall HRQoL domain and majority of the subscales. There were no statistical differences in the overall HRQoL scores and most subscales between caregivers of HIV exposed adolescents. Linear regression analyses across the sample indicated that depressive symptoms, increasing age of caregiver, and caring for an adolescent perinatally exposed to HIV were significantly associated with reduced HRQoL at both the overall and sub-scale level. Having a professional job relative to subsistence farming was the only factor associated with improved overall HRQoL. At subscale level, higher socioeconomic status correlated positively with HRQoL while being a grandparent, level of education, parenting stress were negatively associated with HRQoL. Conclusions Caregivers in this sample, especially those who are ageing, at risk of mental ill-health, and taking care of adolescents perinatally exposed to HIV, appear to be vulnerable to poor quality of life. Inclusive and multi-component interventions tailored to the caregivers' psychosocial and mental needs will potentially enhance their quality of life.

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Section: Discussionsupporting

confidence: 63%

Section: Discussionmentioning

confidence: 99%

Correlates of health-related quality of life in primary caregivers of perinatally HIV infected and HIV exposed uninfected adolescents at the Kenyan Coast

Mwangala

Ssewanyana

Mwangi

et al. 2022

Health Qual Life Outcomes

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“…These studies reported the prevalence of depression among caregivers ranging from 10.7% among carers of perinatally HIV infected adolescents in Kenya (Katona et al, 2020), 12.7% among spouse carers of HIV infected individuals in India (Ghale et al, 2015), 48.3% among carers of HIV infected children in Nigeria (Ogbonna et al, 2019) and 62% and 34% among carers of Status-Naïve paediatric patients in Haiti and the Dominican Republic, respectively (Beck-Sague et al, 2015). In all these studies, the prevalence of depression was higher among female carers and those from low socio-economic homes.…”

Section: Discussionmentioning

confidence: 99%

Prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda

et al. 2021

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Caregiving for cancer and HIV/AIDS patients is complex, and the burden may vary with the type of disease, stages of the illness, and the type of palliative care intervention. Cancer and HIV/AIDS diagnosis and treatment adversely affect not only the patients but also their families and caregivers. They are vulnerable to stress, distress, and depression. Studies in developed countries have shown high prevalence of depression among family caregivers, but the scale of the problem among family caregivers in Uganda is not known. Objective This study aimed to establish the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. Method We used a mixed method study to determine the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9) and collected socio-demographic data using a tailored questionnaire. We used binary logistic regression to assess for the association between depressive symptomatology and caregiver socio-demographic and clinical characteristics. Results We recruited 161 family caregivers, 64% of whom were female. The study revealed a high prevalence of depressive symptoms (46%) (n = 74) among the family caregivers. Education status and religious affiliation were significantly associated with depressive symptomatology. Significance of results Family caregivers of palliative care patients face a high burden of depressive symptoms. Efforts to care for family caregivers within palliative care should include assessment and management of depressive symptoms in this population.

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“…Elderly caregivers, for instance, often stretch state pension grants to meet these needs [ 31 ]. Oftentimes caregivers have to resort to borrowing or selling essential resources to cope with their economic burden [ 29 ]. These households are thus economically vulnerable and the children living in them have the heightened risk of being malnourished [ 30 ].…”

Section: Introductionmentioning

confidence: 99%

“…In addition to tending to the special needs of ALHIV (e.g. adherence, clinic visits, transport costs, nutrition) [28,29], primary caregivers are also challenged with looking after the basic needs of entire households [29][30][31]. Elderly caregivers, for instance, often stretch state pension grants to meet these needs [31].…”

Section: Introductionmentioning

confidence: 99%

An economic incentive package to support the wellbeing of caregivers of adolescents living with HIV during the COVID-19 pandemic in South Africa: a feasibility study protocol for a pilot randomised trial

Carries

Mkhwanazi

Sigwadhi

et al. 2023

Pilot Feasibility Stud

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Background The mental and financial strain linked to unpaid caregiving has been amplified during the COVID-19 pandemic. In sub-Saharan Africa, carers of adolescents living with HIV (ALHIV) are critical for maintenance of optimum HIV treatment outcomes. However, the ability of caregivers to provide quality care to ALHIV is undermined by their ability to maintain their own wellbeing due to multiple factors (viz. poverty, stigma, lack of access to social support services) which have been exacerbated by the COVID-19 pandemic. Economic incentives, such as cash incentives combined with SMS reminders, have been shown to improve wellbeing. However, there is a lack of preliminary evidence on the potential of economic incentives to promote caregiver wellbeing in this setting, particularly in the context of a pandemic. This protocol outlines the design of a parallel-group pilot randomised trial comparing the feasibility and preliminary effectiveness of an economic incentive package versus a control for improving caregiver wellbeing. Methods Caregivers of ALHIV will be recruited from public-sector HIV clinics in the south of the eThekwini municipality, KwaZulu-Natal, South Africa. Participants will be randomly assigned to one of the following groups: (i) the intervention group (n = 50) will receive three cash payments (of ZAR 350, approximately 23 USD), coupled with a positive wellbeing message over a 3-month period; (ii) the control group (n = 50) will receive a standard message encouraging linkage to health services. Participants will be interviewed at baseline and at endline (12 weeks) to collect socio-demographic, food insecurity, health status, mental health (stigma, depressive symptoms) and wellbeing data. The primary outcome measure, caregiver wellbeing, will be measured using the CarerQoL instrument. A qualitative study will be conducted alongside the main trial to understand participant views on participation in the trial and their feedback on study activities. Discussion This study will provide scientific direction for the design of a larger randomised controlled trial exploring the effects of an economic incentive for improving caregiver wellbeing. The feasibility of conducting study activities and delivering the intervention remotely in the context of a pandemic will also be provided. Trial registration PACTR202203585402090. Registry name: Pan African Clinical Trials Registry (PACTR); URL: https://pactr.samrc.ac.za/; Registration. date: 24 March 2022 (retrospectively registered); Date first participant enrolled: 03 November 2021

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Economic burden and mental health of primary caregivers of perinatally HIV infected adolescents from Kilifi, Kenya

Cited by 4 publications

References 31 publications

Correlates of health-related quality of life in primary caregivers of perinatally HIV infected and HIV exposed uninfected adolescents at the Kenyan Coast

Correlates of health-related quality of life in primary caregivers of perinatally HIV infected and HIV exposed uninfected adolescents at the Kenyan Coast

Prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda

An economic incentive package to support the wellbeing of caregivers of adolescents living with HIV during the COVID-19 pandemic in South Africa: a feasibility study protocol for a pilot randomised trial

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