Experiences of grandmothers caring for female adolescents living with HIV in rural Manzini, Eswatini: a caregiver stress model perspective

Nsibandze, Bonisile S.; Downing, Charlené; Poggenpoel, Marie; Myburgh, Chris

doi:10.2989/16085906.2020.1758735

Cited by 5 publications

(10 citation statements)

References 27 publications

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“… 17 The same experiences are consistent with findings in other studies. 14 , 18 , 19 In addition to the above experiences, caregivers kept wondering how they would explain this situation to these adolescents. They also got worried about their future and thought it would be difficult for them to get spouses due to their HIV status.…”

Section: Discussionmentioning

confidence: 99%

“…The different experiences emerged with a variety of challenges which affected both the caregivers and the adolescents as discussed from previous studies. 14 , 17 Adolescence stage which is defined by increased decision making, increased peer pressures and search for self is the most experienced challenge and it is burdensome for caregivers. This is because during this stage, most of the adolescents become disrespectful towards caregivers and fail to listen to important advice and end up with poor adherence to treatment.…”

Section: Discussionmentioning

confidence: 99%

“…This is because the facility runs weekly ART clinic for adolescents. Also 15 care givers who had come with the ALHIV (10)(11)(12)(13)(14)(15)(16)(17)(18)(19) to the ART clinic were recruited. Potential participants were easily identified by the researcher since it was an adolescent clinic day.…”

Section: Populationmentioning

confidence: 99%

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Experiences of Caring for Adolescents Living with HIV (ALHIV): A Qualitative Interview with Caregivers

Kasande¹,

Natwijuka²,

Katushabe³

et al. 2022

HIV

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This study aims at exploring experiences of people caring for adolescents living with HIV, also known as caregivers. By 2021, 150,000 adolescents were living with HIV and 32,000 adolescents were dying of AIDS related causes. HIV/AIDS remains one of the most serious public health problems, especially among the adolescents. This has placed a heavy burden on many caregivers, yet they are essential in caring for ALHIV. However, focus of all interventions has excluded caregivers of ALHIV. Thus, this is the reason why this study is being conducted to find out caregivers' experience in caring for ALHIV. Participants and Methods: A phenomenological study was carried out. Purposive sampling was used to select a total of 15 caregivers to participate in the study. These participants were subjected to in-depth semi-structured interviews. Their responses were recorded, transcribed and translated for thematic analysis. Results: While analyzing the results, six themes emerged. They include: diagnosis and reaction to diagnosis, experiences on adolescent's HIV serostatus disclosure, stigma and discrimination, care disengagement, and lastly, challenges during care and coping strategies. Caregivers experienced feelings of fear, Guilt, suicidal thoughts after diagnosis. Stigma and discrimination of adolescents living with HIV which was common at school and from the neighbors and the adolescent stage were some of the challenges experienced by the caregivers and it makes it hard to retain ALHIV in care. Conclusion:Families are the main source of caregiving to the adolescents living with HIV (ALHIV). The study's findings indicate that caregivers in the families experience challenges related to family needs, and psychological challenges resulting from the adolescence stage. So, families should not be left to shoulder the burden of caring for ALHIV. As a way forward, social network and financial support should also be strengthened for most caregivers as a coping strategy.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Experiences of Caring for Adolescents Living with HIV (ALHIV): A Qualitative Interview with Caregivers

Kasande¹,

Natwijuka²,

Katushabe³

et al. 2022

HIV

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“…This led to major problems for the caregivers and their dependents. 21 in a qualitative study conducted in South Africa, reported that myths surrounding the disease led to grandmothers taking up the care of their infected grandchildren. As they experienced financial constraints, food insecurities among others that plunge them into fear, depression and even suicidal thoughts due to discrimination and stigma.…”

Section: Discussionmentioning

confidence: 99%

Caregivers’ Experiences with Caring for a Child Living with HIV/AIDS: A Qualitative Study in Northern Ghana

Atanuriba

Apiribu

Mensah

et al. 2021

Global Pediatric Health

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With the advent of Anti-Retroviral Therapy, Human Immune Virus, and Acquire Immuno-Deficiency Syndrome is increasingly becoming a chronic disease as life expectancy among People Living With HIV/AIDS has increased. For Children Living With HIV/AIDS the role of the caregivers becomes essential as caregivers’ decisions affect CLWH health. However, the experiences of these caregivers are often unnoticed while all interventions are directed at PLWH. This study aimed at exploring the experiences of caregivers of CLWH in some selected hospitals in northern Ghana. This study employed a qualitative descriptive phenomenological approach. Purposive sampling technique was used to recruit 9 participants from 3 public hospitals in the Tamale Metropolis of Ghana. Data was manually analyzed using the approach of Collaizi and the findings were presented in themes and sub-themes. We conducted individual face to face interviews in English and Dagbani from September to November 2019. These interviews were conducted at the convenience of the participants in hospitals and at their homes. They were introduced to the study while awaiting to take antivirals for their CLWH. Five themes emerged: changed family dynamics, discovery of diagnosis, reaction to diagnosis, disclosure, stigma and discrimination, and burden and challenges of care. Caregivers were severely impacted by caring for CLWH and traumatized by changed family dynamics which exposed them to many difficulties. Stigma was widely perpetrated by immediate family members and majority reacted badly to their children HIV-positive status with fear, shame, guilt and even suicidal ideation.

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“…Evidence from SSA indicates that caregivers' fears around the consequences of inadvertent disclosure of the adolescents' HIV-positive status as well as their own, nancial hardships, multiple caregiving responsibilities; and the lack of social support services are associated with pronounced negative effects on their mental health status (e.g. anxiety levels and depressive symptoms) and overall wellbeing (social isolation, purpose in life) (12)(13)(14). In addition to tending to the special needs of ALHIV (e.g.…”

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. 2022

Preprint

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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 three 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

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Experiences of grandmothers caring for female adolescents living with HIV in rural Manzini, Eswatini: a caregiver stress model perspective

Cited by 5 publications

References 27 publications

Experiences of Caring for Adolescents Living with HIV (ALHIV): A Qualitative Interview with Caregivers

Experiences of Caring for Adolescents Living with HIV (ALHIV): A Qualitative Interview with Caregivers

Caregivers’ Experiences with Caring for a Child Living with HIV/AIDS: A Qualitative Study in Northern Ghana

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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