Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I’m Sick, But I Don’t Know the Sickness—A Qualitative Study

Farthing, Heather; Reynolds, Nancy; Antwi, Sampson; Alhassan, Amina; Ofori, Irene Pokuaa; Renner, Lorna; Amissah, Kofi; Kusah, Jonas Tettey; Lartey, Margaret; Paintsil, Elijah; Team, Sankofa Study

doi:10.1007/s10461-020-02884-4

Cited by 6 publications

(3 citation statements)

References 29 publications

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“…This situation is generated by insecurity and fear that the child will suffer prejudice, be unable to deal with the diagnosis and have emotional consequences (42) . Additionally, the child and family may discover the HIV diagnosis accidentally or by third parties, who are people that are not present in their daily environment, which causes a failure and arouses negative reactions to the message (43) .…”

Section: Discussionmentioning

confidence: 99%

Content validation to support the monitoring of disclosure of HIV diagnosis in childhood

et al. 2022

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Objectives: to create and validate the content of a guide for monitoring the communication of the HIV diagnosis in childhood. Methods: methodological study, with a design guided by the Knowledge-to-Action (KTA) Framework, supported by a participatory approach. The guide’s content was structured according to the communication elements proposed by Lasswel from review studies. Results: the content was validated by 26 experts from nursing, medicine, psychology and pedagogy, using a Likert-type scale for relevance, clarity and precision. Data collection took place online and achieved a Content Validity Index of 0.94. Conclusions: the guide can contribute to the practice of professionals who care for children living with HIV, to support the family in communication and to the child’s right to know their diagnosis. For further research, it is recommended to create and validate the face of the technology in order to implement it.

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Section: Discussionmentioning

confidence: 99%

Content validation to support the monitoring of disclosure of HIV diagnosis in childhood

et al. 2022

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“…Conversely, parents who overestimate the chance of cure may decide that disclosure would only worry their child unnecessarily. Parents may also fear potential social consequences of disclosure, such as being blamed by their child or family for their perceived role in their child’s illness (e.g., in the case of hereditary disease or HIV, or due to cultural beliefs about the etiology of the illness) and any resulting stigma toward the child or family (e.g., Farthing et al, 2020; Claflin & Barbarin, 1991).…”

Section: Systems’ Influence On Disclosure Decisionsmentioning

confidence: 99%

A Framework for Navigating Requests for Nondisclosure in Pediatric Palliative Care

Brown

Sunnquist

Schneider

2021

Clinical Practice in Pediatric Psychology

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Background:The treatment courses of youth with complex, chronic, and/or lifethreatening illnesses are often punctuated with many consequential decision points, particularly when new information related to diagnosis or prognosis is revealed. These junctures may prompt disagreements between and within families and medical teams related to the appropriate amount and type of information to share with the child. When the beliefs held by clinicians and families about information disclosure diverge, pediatric psychologists may be consulted to facilitate collaborative conversations and promote shared decision-making. Objective: Decision-making regarding disclosure is often complex and nuanced. This article sought to synthesize literature on factors that influence disclosure in order to offer a unified model through which pediatric psychologists could guide these discussions. Method: The current article reviews relevant literature through the lens of Bronfenbrenner's (1994) Ecological Systems Framework. A detailed case vignette is used to illustrate the application of this framework to disclosure decisions. Conclusion: The framework presented in this article is offered as a guide for liaising with families and treatment teams, promoting enhanced understanding of divergent viewpoints, and facilitating collaborative conversations about the amount and type of information to share (or not to share) with the child. Implications for Impact StatementIndividuals hold varied beliefs regarding the disclosure of diagnosis and/or prognosis to pediatric patients, and these differences can contribute to increased stress and conflict among family members and providers. This article proposes a framework to guide psychologists in navigating requests for nondisclosure.

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“…The authors further claimed that the challenges that older caregivers face predispose them to burdens that affect their physical, and psychological well-being [8,9]. Furthermore, grandparent caregivers often present with health challenges, such as poorer emotional well-being and declining psychological health, because of stressors arising from caring for their grandchildren [10,11]. Consequently, the stress of providing care exposes caregivers to long-term illnesses that make it di cult for them to perform their daily caregiving responsibilities [12].…”

Section: Introductionmentioning

confidence: 99%

Support provided by outreach team leaders to caregivers of HIV/AIDS orphans in the North-West Province of South Africa

Molato,

Moloko-Phiri,

Koen

et al. 2024

Preprint

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Background The human immunodeficiency virus (HIV) and acquired immunodeficiency deficiency syndrome (AIDS) epidemic have left an overwhelming impact on communities worldwide, particularly in Sub-Saharan Africa, where its effects on family structures are particularly pronounced. Caregivers of children orphaned by HIV/AIDS encounter challenges in fulfilling their caring duties. Consequently, they rely on the outreach team leaders (OTLs) for support to care for HIV/AIDS orphans. Aim This study aimed to explore and describe support provided by OTLs to caregivers of children orphaned by HIV/AIDS in the North West Province of South Africa. Methods The exploratory, descriptive, and contextual design was used to realize the objectives of this study. The study was conducted in five local municipalities in the Ngaka Modiri Molema district of the North West Province of South Africa. Ward-based outreach nurses were participants in the study. Semi-structured focus group interviews were used for data collection. Thematic analysis was used to analyze data. Throughout the study, ethical principles were adhered to. The study also adhered to four trustworthiness principles: credibility, confirmability, transferability, and dependability. Results Three main themes emerged from this study: the conduction of home visits to caregivers of HIV/AIDS orphans, the coordination of a multidisciplinary team for support, and the facilitation of support groups. Conclusions The study revealed support provided by OTLs to the caregivers of children orphaned by HIV/AIDS. Caregivers benefitted from the support provided and, therefore, experienced less stigma. Moreover, discrimination was reduced, disclosure was done on time, and medication adherence improved.

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Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I’m Sick, But I Don’t Know the Sickness—A Qualitative Study

Cited by 6 publications

References 29 publications

Content validation to support the monitoring of disclosure of HIV diagnosis in childhood

Content validation to support the monitoring of disclosure of HIV diagnosis in childhood

A Framework for Navigating Requests for Nondisclosure in Pediatric Palliative Care

Support provided by outreach team leaders to caregivers of HIV/AIDS orphans in the North-West Province of South Africa

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