Stakeholder engagement is essential to maximise the impact of research on infant feeding in the context of HIV

Kasadha, Bakita; Tariq, Shema; Nyatsanza, Farai; Freeman-Romilly, Nell; Namiba, Angelina; Rai, Tanvi

doi:10.1177/20499361211057970

Cited by 3 publications

(3 citation statements)

References 12 publications

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“…Eight countries (8/25 [32%]) have research studies on breastfeeding in women living with HIV, and some reported multiple studies. At a national level, five research studies (5/9 [56%]) are ongoing, two (2/9 [22%]) have been published [10][11][12][13], and two research studies (2/9 [22%]) have been completed. At the local level, three research studies (3/4 [75%]) are ongoing, and one respondent reported that their research studies (1/4 [25%]) have been published [14,15].…”

Section: Research On Hiv and Breastfeedingmentioning

confidence: 99%

Guidelines and practice of breastfeeding in women living with HIV—Results from the European INSURE survey

Keane,

Lyons,

Aebi‐Popp

et al. 2023

HIV Medicine

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IntroductionAntiretroviral therapy (ART) is integral to HIV prevention, including averting vertical transmission. The World Health Organization (WHO) recommends ART and breastfeeding for all women living with HIV for at least 12 months post‐partum [1, 2]. Much of the data on HIV transmission through breastfeeding comes from low‐resource settings, with a paucity of data on breastfeeding‐related HIV transmission in women living with HIV in other settings. Women Against Viruses in Europe (WAVE), part of the European AIDS Clinical Society (EACS), aims to improve the standard of care for women living with HIV and sought to gain an understanding of breastfeeding guidelines and practice in women living with HIV across Europe.MethodsA steering group convened by WAVE developed a survey to collate information on breastfeeding trends, practice, and guideline recommendations for women living with HIV in Europe and to establish interest in becoming involved in a collaborative breastfeeding network. The survey was disseminated to 31 countries in March 2022.ResultsIn total, 25 eligible responses were received: 23/25 (92%) countries have HIV and pregnancy guidelines; 23/23 (100%) guidelines refer specifically to breastfeeding; 12/23 (52%) recommend against breastfeeding; 11/23 (48%) offer an option if certain criteria are met; 12/25 (48%) reported that the number of women living with HIV who breastfeed is increasing; 24/25 (96%) respondents were interested in joining a network on breastfeeding in women living with HIV.ConclusionsRecommendations vary, and nearly half of the guidelines recommend against breastfeeding. Many countries report an increase in breastfeeding. WAVE will establish a collaborative network to bridge data gaps, conduct research, and improve support for women living with HIV who choose to breastfeed.

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Section: Research On Hiv and Breastfeedingmentioning

confidence: 99%

Guidelines and practice of breastfeeding in women living with HIV—Results from the European INSURE survey

Keane,

Lyons,

Aebi‐Popp

et al. 2023

HIV Medicine

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“…Consider the rights of a father requesting a zero-risk strategy versus a mother who wants to breastfeed on suppressive ART, or conversely a woman very anxious regarding the risk of transmission but feels pressured to breastfeed by others. Qualitative studies hand-in-hand with stakeholder engagement are required to better understand how families living with HIV navigate this complex risk balance [ 55 , 56 ]. Of note, the voice of the infant at risk of HIV infection through breastfeeding is absent.…”

Section: Ethical and Legal Considerations: Optimizing Health Outcomes...mentioning

confidence: 99%

Infant feeding: emerging concepts to prevent HIV transmission

Bamford,

Foster,

Lyall

2023

Current Opinion in Infectious Diseases

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Purpose of review HIV screening in pregnancy, universal suppressive antiretroviral therapy (ART) and breastfeeding avoidance can almost completely prevent vertical transmission of HIV. Breastfeeding is associated with an additional risk of transmission, although this risk is extremely low with suppressive maternal ART. This minimal risk must be balanced with the benefits of breastfeeding for women living with HIV (WLHIV) and their infants. Guidance in high-income countries has evolved, moving towards supported breast feeding for women on suppressive ART. Recent findings Breastmilk transmission accounts for an increasing proportion of new infant infections globally. The majority of transmission data comes from studies including women not on suppressive ART. Breastmilk transmissions in the context of undetectable viral load have rarely occurred, although risk factors remain unclear. Outcome data on supported breastfeeding are accumulating, providing evidence for guidelines and informing infant feeding decisions. Long-acting ART for maternal preexposure prophylaxis or treatment, and infant postnatal prophylaxis are promising future options. Summary Breastfeeding on suppressive ART has a very low risk of vertical transmission and can have multiple benefits for WLHIV and their infants. However, caution is advised with relaxation of breastfeeding guidance so as not to jeopardise the global goal of elimination of vertical transmission by 2030.

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“…There is growing recognition of the importance of including pregnant people and parents living with HIV at all stages of research, beyond being research participants, in accordance with equitable research principles and UNAIDS policy for greater involvement of people living with HIV [ 21 , 22 ]. Successful examples of co‐production in research and policymaking exist; such as the inclusion of mothers living with HIV in the study team and the advisory board of the NOURISH‐UK study on HIV and infant feeding [ 23 ] and community‐led WHO consultation with women living with HIV when preparing updates to guidelines [ 24 ]. However, there are areas of research where women living with HIV are excluded from participating and shaping research.…”

Section: Introductionmentioning

confidence: 99%

Setting the research agenda: involving parents in research on children who are HIV‐free

Bukasa,

Namiba,

Brown

et al. 2023

J Int AIDS Soc.

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IntroductionThere is growing interest in health, developmental and survival outcomes of children who are born HIV‐free to women living with HIV (children born HIV‐free). To date, the research agenda has been largely determined by researchers, funders and policy makers, with limited involvement of parents, who are key stakeholders. Researchers at UCL Great Ormond Street Institute of Child Health in partnership with community‐based organisation 4M Network of Mentor Mothers conducted two workshops with parents in March 2022 to establish research priorities for children born HIV‐free, and key considerations for methodological approaches both to research and engagement with the affected communities.DiscussionWhen exploring research on children born HIV‐free, we consider the following: what aspects of current research are aligned with women and parents’ priorities, what is missing and what approaches would be preferred. A holistic approach to research on children born HIV‐free should be prioritised, focussing on a breadth of outcomes and how they intersect. Secondary use of existing data sources should be maximised to facilitate this, with a view of monitoring the long‐term effects of fetal antiretroviral drug exposure alongside other key health and developmental outcomes. Involving and engaging with parents, and children where possible, must be at the heart of research design to maximise relevance and impact of findings for the affected communities. Potential barriers to engaging with individuals who were children born HIV‐free include parental disclosure and individuals not identifying as a child born HIV‐free to a mother living with HIV. Stigma‐free language must be incorporated into the vocabulary of researchers and other stakeholders, avoiding reference to exposure; we propose the term “children born HIV‐free.”ConclusionsMothers and parents living with HIV should be involved in research about their children born HIV‐free and are key in identifying research priorities so that findings may translate into an impact on their children's health and wellbeing. Meaningful involvement of women living with HIV through trusted community partners is an effective mechanism by which to elicit views on research about their children.

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Stakeholder engagement is essential to maximise the impact of research on infant feeding in the context of HIV

Cited by 3 publications

References 12 publications

Guidelines and practice of breastfeeding in women living with HIV—Results from the European INSURE survey

Guidelines and practice of breastfeeding in women living with HIV—Results from the European INSURE survey

Infant feeding: emerging concepts to prevent HIV transmission

Setting the research agenda: involving parents in research on children who are HIV‐free

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