Cultural Implications of Death and Loss from AIDS Among Women in South Africa

Iwelunmor, Juliet; Airhihenbuwa, Collins O.

doi:10.1080/07481187.2011.553332

Cited by 7 publications

(3 citation statements)

References 27 publications

(33 reference statements)

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“…29 Iwelunmor and Airhihenbuwa's study on cultural implications of death and loss from AIDS among women in South Africa found that negative perceptions of AIDS-related death were linked to the belief that HIV status represented a death sentence. 30 PLHA in Bihar similarly reported a fear of death and a desire for active treatment as part of this qualitative study.…”

Section: Discussionmentioning

confidence: 87%

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Nair¹,

Kumar

Mahajan³

et al. 2020

BMJ Open

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ObjectivesThis study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.DesignThis was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.SettingAll interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.ParticipantsWe purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.ResultsCritically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as ‘palliative care’ and ‘end-of-life care’. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients’ deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.ConclusionsDespite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients’ preferences.

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Section: Discussionmentioning

confidence: 87%

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Nair¹,

Kumar

Mahajan³

et al. 2020

BMJ Open

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“…Because the officials regarded HIV/AIDS as a death sentence (see Iwelunmor and Airhihenbuwa, 2012), they failed to understand the need for the organization.…”

Section: The Various Spaces Of Stigma and Discriminationmentioning

confidence: 99%

An Institutional Field of People Living with HIV/AIDS Organizations in Tanzania: Agency, Culture, Dialogue, and Structure

Olufowote

2017

Front. Commun.

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Communication research on public health organizations and people living with HIV/ AIDS (PLWHA) have paid insufficient attention to PLWHA organizations. These organizations, constituted and operated by PLWHA, advocate on behalf of PLWHA with more powerful institutions in society and serve as sources of empowerment and support. I drew on the culture-centered approach to health communication and institutional perspectives on health organizations to explore PLWHA organizations in Tanzania, namely, their cultural and structural contexts, agency, and dialogue. Tanzania has 1.5 million PLWHA and a 5.3% adult prevalence rate that ranks it as 12th highest in the world. Through interviews with leaders of 10 PLWHA organizations, I found a cultural context of HIV stigma and discrimination, a structural context consisting of corruption and bureaucratic politics in governing bodies as well as lack of access to resources, agency to impact PLWHA and members of society in a variety of ways, and processes of dialogue within advocacy networks of PLWHA organizations and in network collaborations with the government. I conclude with implications for improving the organizations' interactions with their structural context and for developing the contribution from the culture-centered approach to health communication on structures as health organizations and systems.Keywords: culture-centered approach, hiV/aiDs, institutional perspectives on health organizations, people living with hiV/aiDs organizations, sub-saharan africa People living with HIV/AIDS (PLWHA) organizations are understudied in communication research. PLWHA organizations are non-profit organizations (NPOs) constituted and operated primarily by volunteers who are PLWHA. These organizations emerge out of dissatisfaction with responses to the HIV/AIDS epidemic by more powerful societal actors (e.g., government); they pursue the interests of PLWHA by advocating on behalf of PLWHA in their communities and societies (Maguire et al., 2001). It is important to focus on PLWHA organizations because PLWHA in the Global South face continuing problems such as stigma and discrimination (Okoror et al., 2014). Moreover, these organizations have implications for the empowerment, support, and wellbeing of PLWHA.Although one body of communication research on health organizations has recognized a variety of public health organizations (e.g

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“…The paper of Iwelunmor and Airhihenbuwa (2012), into the cultural perceptions of women regarding death and loss from HIV/AIDS in South Africa, described PEN-3 as an organizing guide; major organizing ideas were identified in each transcript, interpreted and sorted into categories, and finally reduced into themes fitting the dimensions RE en CE. As one of the few studies in this review, this study describes an example of something that most would perceive as negative (death), but was perceived by the participants as a form of relief (positive/existential).…”

Section: Resultsmentioning

confidence: 99%

Finding ways to promote STI testing among the Afro-Caribbean community in the Netherlands

Westmaas¹

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People interested in the research are advised to contact the author for the final version of the publication, or visit the DOI to the publisher's website.• The final author version and the galley proof are versions of the publication after peer review.• The final published version features the final layout of the paper including the volume, issue and page numbers. Link to publication General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.• Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal.If the publication is distributed under the terms of Article 25fa of the Dutch Copyright Act, indicated by the "Taverne" license above, please follow below link for the End User Agreement:

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Cultural Implications of Death and Loss from AIDS Among Women in South Africa

Cited by 7 publications

References 27 publications

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

An Institutional Field of People Living with HIV/AIDS Organizations in Tanzania: Agency, Culture, Dialogue, and Structure

Finding ways to promote STI testing among the Afro-Caribbean community in the Netherlands

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