Social engagement in HIV cure (research) in the Netherlands: understanding the perceived necessity and concerns of people with HIV

Maaike A. J. Noorman; John B. F. de Wit; Tamika A. Marcos; Sarah E. Stutterheim; Kai J. Jonas; Chantal den Daas

doi:10.1097/QAI.0000000000003429

Social engagement in HIV cure (research) in the Netherlands: understanding the perceived necessity and concerns of people with HIV

Maaike A. J. Noorman
, John B. F. de Wit
, Tamika A. Marcos
, Sarah E. Stutterheim
, Kai J. Jonas
, Chantal den Daas

Research output: Contribution to journal › Article › peer-review

4 Citations (Scopus)

Abstract

Objective: As the developments toward HIV cure are gaining prominence, engagement of people with HIV (PWH) becomes crucial. The aim of this study was to gain deeper insight into how PWH engage with HIV cure (research) by exploring their perspectives regarding awareness, importance, and meaning of HIV cure (research).

Methods: Semistructured interviews were conducted with 30 purposively sampled PWH in the Netherlands. Interviews were transcribed verbatim, and thematic data analysis was undertaken.

Results: The overall necessity for an HIV cure was high, but personal perceived necessity varied based on participants' lived experiences with HIV. Most participants saw less personal necessity due to their high quality of life, while those more affected by their HIV status expressed a stronger need for a cure. Participants held high expectations for an HIV cure, considering viral eradication as the only cure. Lack of awareness of potential HIV cure strategies and techniques shaped concerns. Antiretroviral treatment-free viral suppression was met with concerns and not considered a cure, but rather an improved form of treatment. Engagement with HIV cure manifested in various forms and levels, with only a few participants actively engaged or willing to participate in HIV cure clinical research. Most participants were interested but inactive and unsure about participating in HIV cure clinical research.

Conclusions: PWH's social engagement in HIV cure (research) is shaped by their perceived necessity and concerns. Understanding these perceptions can increase social engagement.

Original language	English
Pages (from-to)	361-366
Number of pages	6
Journal	Journal of acquired immune deficiency syndromes : JAIDS.
Volume	96
Issue number	4
Early online date	1 Aug 2024
DOIs	https://doi.org/10.1097/QAI.0000000000003429
Publication status	Published - 1 Aug 2024
Event	National Congress HIV (NCHIV) - Amsterdam, Netherlands Duration: 23 Nov 2021 → 23 Nov 2021 https://nchiv.org/conference-archive-2021/

Bibliographical note

Meetings at which parts of the data were presented: National Congress HIV (NCHIV), Amsterdam—November 23, 2021; AIDS Impact, Stockholm—June 12–14, 2023; European Health Psychology Society (EHPS) 2023, Bremen—September 4–8, 2023.

Acknowledgements
The authors would like to express our gratitude to the following individuals and organizations for their contributions to this paper. First, the authors are immensely grateful to the participants who shared their time, experiences, and stories, making this research possible. Their willingness to engage in open and honest discussions added depth and richness to our findings. The authors also extend our appreciation to the members of the professional and community advisory boards who provided their expertise, insights, and guidance throughout the research process, which greatly enhanced the quality of this study. The authors would also like to acknowledge the Hiv Vereniging (Dutch HIV association) for their support and collaboration. The authors thank Lissa Agema and Vaneza Paulo for the transcriptions.

Funding

This research has been funded by Aidsfonds under Grant P-53001.

Funders	Funder number
Aidsfonds	P-53001

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

HIV
HIV cure
people with HIV
social engagement
MIPA

Access to Document

10.1097/QAI.0000000000003429Licence: CC BY

Noorman_etal_JAIDS_Social_Engagement_In_VoR
This is an open access article distributed under the Creative Commons Attribution License 4.0 (CCBY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Final published version, 98.1 KBLicence: CC BY

Cite this

Social engagement in HIV cure (research) in the Netherlands: understanding the perceived necessity and concerns of people with HIV. / Noorman, Maaike A. J.; de Wit, John B. F.; Marcos, Tamika A. et al.
In: Journal of acquired immune deficiency syndromes : JAIDS. , Vol. 96, No. 4, 01.08.2024, p. 361-366.

Research output: Contribution to journal › Article › peer-review

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abstract = "Objective: As the developments toward HIV cure are gaining prominence, engagement of people with HIV (PWH) becomes crucial. The aim of this study was to gain deeper insight into how PWH engage with HIV cure (research) by exploring their perspectives regarding awareness, importance, and meaning of HIV cure (research). Methods: Semistructured interviews were conducted with 30 purposively sampled PWH in the Netherlands. Interviews were transcribed verbatim, and thematic data analysis was undertaken. Results: The overall necessity for an HIV cure was high, but personal perceived necessity varied based on participants' lived experiences with HIV. Most participants saw less personal necessity due to their high quality of life, while those more affected by their HIV status expressed a stronger need for a cure. Participants held high expectations for an HIV cure, considering viral eradication as the only cure. Lack of awareness of potential HIV cure strategies and techniques shaped concerns. Antiretroviral treatment-free viral suppression was met with concerns and not considered a cure, but rather an improved form of treatment. Engagement with HIV cure manifested in various forms and levels, with only a few participants actively engaged or willing to participate in HIV cure clinical research. Most participants were interested but inactive and unsure about participating in HIV cure clinical research. Conclusions: PWH's social engagement in HIV cure (research) is shaped by their perceived necessity and concerns. Understanding these perceptions can increase social engagement. ",

keywords = "HIV, HIV cure, people with HIV, social engagement, MIPA",

author = "Noorman, \{Maaike A. J.\} and \{de Wit\}, \{John B. F.\} and Marcos, \{Tamika A.\} and Stutterheim, \{Sarah E.\} and Jonas, \{Kai J.\} and \{den Daas\}, Chantal",

note = "Meetings at which parts of the data were presented: National Congress HIV (NCHIV), Amsterdam—November 23, 2021; AIDS Impact, Stockholm—June 12–14, 2023; European Health Psychology Society (EHPS) 2023, Bremen—September 4–8, 2023. Acknowledgements The authors would like to express our gratitude to the following individuals and organizations for their contributions to this paper. First, the authors are immensely grateful to the participants who shared their time, experiences, and stories, making this research possible. Their willingness to engage in open and honest discussions added depth and richness to our findings. The authors also extend our appreciation to the members of the professional and community advisory boards who provided their expertise, insights, and guidance throughout the research process, which greatly enhanced the quality of this study. The authors would also like to acknowledge the Hiv Vereniging (Dutch HIV association) for their support and collaboration. The authors thank Lissa Agema and Vaneza Paulo for the transcriptions.; National Congress HIV (NCHIV), NCHIV ; Conference date: 23-11-2021 Through 23-11-2021",

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journal = "Journal of acquired immune deficiency syndromes : JAIDS. ",

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AU - Stutterheim, Sarah E.

AU - Jonas, Kai J.

AU - den Daas, Chantal

N1 - Meetings at which parts of the data were presented: National Congress HIV (NCHIV), Amsterdam—November 23, 2021; AIDS Impact, Stockholm—June 12–14, 2023; European Health Psychology Society (EHPS) 2023, Bremen—September 4–8, 2023. Acknowledgements The authors would like to express our gratitude to the following individuals and organizations for their contributions to this paper. First, the authors are immensely grateful to the participants who shared their time, experiences, and stories, making this research possible. Their willingness to engage in open and honest discussions added depth and richness to our findings. The authors also extend our appreciation to the members of the professional and community advisory boards who provided their expertise, insights, and guidance throughout the research process, which greatly enhanced the quality of this study. The authors would also like to acknowledge the Hiv Vereniging (Dutch HIV association) for their support and collaboration. The authors thank Lissa Agema and Vaneza Paulo for the transcriptions.

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N2 - Objective: As the developments toward HIV cure are gaining prominence, engagement of people with HIV (PWH) becomes crucial. The aim of this study was to gain deeper insight into how PWH engage with HIV cure (research) by exploring their perspectives regarding awareness, importance, and meaning of HIV cure (research). Methods: Semistructured interviews were conducted with 30 purposively sampled PWH in the Netherlands. Interviews were transcribed verbatim, and thematic data analysis was undertaken. Results: The overall necessity for an HIV cure was high, but personal perceived necessity varied based on participants' lived experiences with HIV. Most participants saw less personal necessity due to their high quality of life, while those more affected by their HIV status expressed a stronger need for a cure. Participants held high expectations for an HIV cure, considering viral eradication as the only cure. Lack of awareness of potential HIV cure strategies and techniques shaped concerns. Antiretroviral treatment-free viral suppression was met with concerns and not considered a cure, but rather an improved form of treatment. Engagement with HIV cure manifested in various forms and levels, with only a few participants actively engaged or willing to participate in HIV cure clinical research. Most participants were interested but inactive and unsure about participating in HIV cure clinical research. Conclusions: PWH's social engagement in HIV cure (research) is shaped by their perceived necessity and concerns. Understanding these perceptions can increase social engagement.

AB - Objective: As the developments toward HIV cure are gaining prominence, engagement of people with HIV (PWH) becomes crucial. The aim of this study was to gain deeper insight into how PWH engage with HIV cure (research) by exploring their perspectives regarding awareness, importance, and meaning of HIV cure (research). Methods: Semistructured interviews were conducted with 30 purposively sampled PWH in the Netherlands. Interviews were transcribed verbatim, and thematic data analysis was undertaken. Results: The overall necessity for an HIV cure was high, but personal perceived necessity varied based on participants' lived experiences with HIV. Most participants saw less personal necessity due to their high quality of life, while those more affected by their HIV status expressed a stronger need for a cure. Participants held high expectations for an HIV cure, considering viral eradication as the only cure. Lack of awareness of potential HIV cure strategies and techniques shaped concerns. Antiretroviral treatment-free viral suppression was met with concerns and not considered a cure, but rather an improved form of treatment. Engagement with HIV cure manifested in various forms and levels, with only a few participants actively engaged or willing to participate in HIV cure clinical research. Most participants were interested but inactive and unsure about participating in HIV cure clinical research. Conclusions: PWH's social engagement in HIV cure (research) is shaped by their perceived necessity and concerns. Understanding these perceptions can increase social engagement.

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KW - MIPA

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JO - Journal of acquired immune deficiency syndromes : JAIDS.

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Y2 - 23 November 2021 through 23 November 2021

ER -

Social engagement in HIV cure (research) in the Netherlands: understanding the perceived necessity and concerns of people with HIV

Abstract

Bibliographical note

Funding

UN SDGs

Keywords

Access to Document

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