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

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

Purpose

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.

Related collections

Most cited references 39

Record: found
Abstract: found
Article: found

Is Open Access

Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis

Ingrid T. Katz, Annemarie Ryu, Afiachukwu Onuegbu … (2013)

Introduction Adherence to HIV antiretroviral therapy (ART) is a critical determinant of HIV-1 RNA viral suppression and health outcomes. It is generally accepted that HIV-related stigma is correlated with factors that may undermine ART adherence, but its relationship with ART adherence itself is not well established. We therefore undertook this review to systematically assess the relationship between HIV-related stigma and ART adherence. Methods We searched nine electronic databases for published and unpublished literature, with no language restrictions. First we screened the titles and abstracts for studies that potentially contained data on ART adherence. Then we reviewed the full text of these studies to identify articles that reported data on the relationship between ART adherence and either HIV-related stigma or serostatus disclosure. We used the method of meta-synthesis to summarize the findings from the qualitative studies. Results Our search protocol yielded 14,854 initial records. After eliminating duplicates and screening the titles and abstracts, we retrieved the full text of 960 journal articles, dissertations and unpublished conference abstracts for review. We included 75 studies conducted among 26,715 HIV-positive persons living in 32 countries worldwide, with less representation of work from Eastern Europe and Central Asia. Among the 34 qualitative studies, our meta-synthesis identified five distinct third-order labels through an inductive process that we categorized as themes and organized in a conceptual model spanning intrapersonal, interpersonal and structural levels. HIV-related stigma undermined ART adherence by compromising general psychological processes, such as adaptive coping and social support. We also identified psychological processes specific to HIV-positive persons driven by predominant stigmatizing attitudes and which undermined adherence, such as internalized stigma and concealment. Adaptive coping and social support were critical determinants of participants’ ability to overcome the structural and economic barriers associated with poverty in order to successfully adhere to ART. Among the 41 quantitative studies, 24 of 33 cross-sectional studies (71%) reported a positive finding between HIV stigma and ART non-adherence, while 6 of 7 longitudinal studies (86%) reported a null finding (Pearson's χ 2=7.7; p=0.005). Conclusions We found that HIV-related stigma compromised participants’ abilities to successfully adhere to ART. Interventions to reduce stigma should target multiple levels of influence (intrapersonal, interpersonal and structural) in order to have maximum effectiveness on improving ART adherence.

0 comments Cited 228 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Adolescent growth and development.

Veenod Chulani, Lonna Gordon (2014)

Adolescence is a developmental stage defined by physical and psychosocial maturation. This article reviews normal pubertal development and the evaluation and management of adolescents with suspected pubertal abnormalities and provides an overview of adolescent psychosocial development.

0 comments Cited 38 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: found

Is Open Access

Stigma and Discrimination towards People Living with HIV in the Context of Families, Communities, and Healthcare Settings: A Qualitative Study in Indonesia

Nelsensius Klau Fauk, Karen G Hawke, Lillian Mwanri … (2021)

HIV stigma and discrimination are a major challenge facing people living with HIV (PLHIV) globally. As part of a larger qualitative study with PLHIV in Yogyakarta and Belu, Indonesia, this paper describes the participants’ perceptions about drivers of HIV stigma and discrimination towards them within families, communities and healthcare settings, and highlights issues of HIV stigma as a social process. Participants were recruited using a snowball sampling technique. Data analysis was guided by the framework analysis for qualitative data, and conceptualization and discussion of the study findings were guided by the HIV stigma framework. The findings showed that participants experienced stigma and discrimination across settings, including in families and communities by family and community members, and in healthcare settings by healthcare professionals. The lack of knowledge about HIV, fear of contracting HIV, social and moral perceptions about HIV and PLHIV were perceived facilitators or drivers of stigma and discrimination towards PLHIV. HIV stigma and discrimination were also identified as a process linked to the whole groups of people within families or communities, which occurred within social context in Yogyakarta and Belu. The findings indicate the need for HIV education for family and community members, and healthcare providers to enhance their knowledge of HIV and improve acceptance of PLHIV within families, communities and healthcare settings.

0 comments Cited 31 times – based on 0 reviews      Review now

Bookmark

All references

Author and article information

Journal

Journal ID (nlm-ta): HIV AIDS (Auckl)

Journal ID (iso-abbrev): HIV AIDS (Auckl)

Journal ID (publisher-id): hiv

Title: HIV/AIDS (Auckland, N.Z.)

Publisher: Dove

ISSN (Electronic): 1179-1373

Publication date (Electronic): 21 December 2022

Publication date Collection: 2022

Volume: 14

Pages: 577-589

Affiliations

[1 ]Faculty of Nursing and Health Sciences, Bishop Stuart University , Mbarara, Uganda

Author notes

Correspondence: Meble Kasande, Bishop Stuart University, Faculty of Nursing and Health Sciences , P.O Box 09, Mbarara, Uganda, Tel +256 7812551, Email meblekasande@gmail.com; aotweheyo@nhs.bsu.ac.ug

Author information

Meble Kasande http://orcid.org/0000-0001-6324-0405

Andrew Natwijuka http://orcid.org/0000-0002-6641-6960

Eve Katushabe Snr http://orcid.org/0000-0002-1198-045X

Article

Publisher ID: 388715

DOI: 10.2147/HIV.S388715

PMC ID: 9790143

PubMed ID: 36575691

SO-VID: 064c09b4-96b0-478b-a088-e10ed5ad5861

License:

This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms ( https://www.dovepress.com/terms.php).

History

Date received : 13 September 2022

Date accepted : 13 December 2022

Page count

Figures: 0, Tables: 2, References: 41, Pages: 13

Funding

Funded by: financial support;

The author(s) did not receive any financial support for this research, its authorship and publication.

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

Read this article at

Abstract

Purpose

Participants and Methods

Results

Conclusion

Related collections

HIV Self-Testing

Most cited references 39

Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis

Adolescent growth and development.

Stigma and Discrimination towards People Living with HIV in the Context of Families, Communities, and Healthcare Settings: A Qualitative Study in Indonesia

Author and article information

Journal

Affiliations

Author notes

Author information

Article

History

Page count

Funding

Categories

Comments

Comment on this article

Similar content 105

Cited by 2

Most referenced authors 264