Robert Pool

University of Amsterdam

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Christopher Pell

Amsterdam Institute for Global Health and Development

Marjolein Gysels

Hospital de Faro EPE

Catherine M. Montgomery

University of Edinburgh

Arantza Meñaca

Universitat de Barcelona

Erin V. W. Andrew

Thomas Jefferson University

Sheena McCormack

University College London

James Whitworth

London School of Hygiene & Tropical Medicine

Mitzy Gafos

Faculty of Public Health

Natalie Evans

Amsterdam University Medical Centers

Richard Harding

King's College London

Cooperative Institutions

London School of Hygiene & Tropical Medicine

Universitat de Barcelona

Medical Research Council

Uganda Virus Research Institute

University of London

Manhiça Health Research Centre

Barcelona Institute for Global Health

University of Amsterdam

National Institute for Medical Research

Makerere University

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“Let's Talk about Sex”: A Qualitative Study of Rwandan Adolescents' Views on Sex and HIV

PLoS ONE (2014)

Jennifer Ilo Van Nuil Philippe R. Mutwa Brenda Asiimwe‐Kateera Evelyne Kestelyn Joseph Vyankandondera

Objective This qualitative study explored the views and experiences of adolescents with perinatally acquired HIV in Kigali, Rwanda, regarding sex, love, marriage, children and hope for the future. Design The study enrolled 42 adolescents who had received combination antiretroviral therapy for at least 12 months, and a selection of their primary caregivers. Study methods included 3 multiple day workshops consisting of role-playing and focus group discussions (FGDs) with adolescents, 8 in-depth interviews with adolescents, and one FGD with caregivers. Results The adolescents reported experiencing similar sexual needs and dilemmas as most other adolescents, but with an added layer of complexity due to fears related to HIV transmission and/or rejection by partners. They desired more advice from their parents/caregivers on these topics. Although they struggled with aspects of sex, love, marriage and having children, most agreed that they would find love, be married and have children in the future. The two most discussed HIV-related anxieties were how and when to disclose to a (potential) sex/marriage partner and whether to have children. However, most adolescents felt that they had a right to love and be loved, and were aware of prevention-of-mother-to-child-transmission (PMTCT) options in Rwanda. Adolescents generally spoke about their future role in society in a positive manner. Conclusion Strengthening the life skills of HIV-positive adolescents, especially around HIV disclosure and reduction of HIV transmission, as well as the support skills of parents/caregivers, may not only reduce onward HIV transmission but also improve quality of life by reducing anxiety.

Sexual transmission

10.1371/journal.pone.0102933

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Citations (14)

Ambivalence, sexual pleasure and the acceptability of microbicidal products in south-west Uganda

AIDS (2000)

Robert Pool James Whitworth Gill Green Anthony K. Mbonye Susan Harrison

In a recent study of the acceptability of the female condom, foaming tablets, sponge, foam, film and gel among 146 women and 35 of their male partners in south-west Uganda, we found a clear demand for, and consistent use of, these products. Although the participants understood that, with the exception of the female condom, there was no certainty about how much protection, if any, the products provided against HIV and sexually transmitted diseases (STD), they nonetheless said that the main reason for using the products was the partial additional protection they might offer [1]. In another, recently completed study carried out in the same area, we found that 53% (101/192) of respondents had used a male condom at least once. Condom use tended to be sporadic: only 13 out of 101 individuals claimed to use a condom regularly and the majority of those who had ever used a condom last used one more than a year previously. The commonest reason for using a condom was fear of AIDS. The commonest reasons for almost half of respondents never having used a condom related to being in a regular relationship or to the perceived unpleasant or dangerous characteristics of condoms. Condoms were said to imply distrust in regular relationships and therefore were unacceptable in such relationships for any reason other than family planning. Respondents complained that condoms reduce sensation (mostly men), that they were physically distasteful (mostly women). There were rumours of condoms being impregnated with HIV or being porous, and stories of condoms lodging themselves in the woman. Finally, there have been recent stories of condoms causing penises to drop off. A comparison of the reception of female controlled products with the male condom reveals a striking ambivalence. People in the study area liked the products but disliked and distrusted condoms; they used products consistently whereas condom use was sporadic; they did not mind using the products in regular relationships, whereas condom use in the same relationships was taboo; they used products for extra protection (although they knew that they did not offer much) but would not use condoms (even though they knew that they offer substantial protection) because of rumours that they might be unreliable or dangerous. Men were opposed to female control, but they claimed to like the products. There are various possible explanations for this ambivalence. First, condoms have been around for a long time, whereas the female products were novel in the study area. Acceptability might have been influenced by participants’ curiosity and desire to experiment. Second, because the products were new there might not have been sufficient time for horror stories to develop. Third, the fact that products were used in the context of a study might have influenced their acceptability. However, there was another, more important reason for acceptability: sexual pleasure. Most participants (90% of the women and 86% of the men) said that products did not interfere with sexual enjoyment. Indeed, 24% of the women and 67% of the men said that the products actually increased their enjoyment of sex [1]. This increased enjoyment was due largely to increased lubrication. In the study area ‘dry sex’ is not popular, as has been reported for many other parts of sub-Saharan Africa [2–7], and participants preferred products that were perceived to make sex ‘wet'. If these products were widely available, negative connotations might develop: there are no intrinsic reasons why foaming tablets or sponges should not also imply distrust in regular relationships, especially if the main reason for using them is protection against HIV and STD. However, such potential negative factors might be offset by increased sexual enjoyment. After all, many of the horror stories about condoms are basically rationalizations because people do not like using them anyway because they reduce sexual pleasure. Cultural acceptability is important, but sexual enjoyment (which has been largely ignored in discussions about HIV prevention) is probably more important in the development of acceptable products. This suggests ways forward in designing and promoting acceptable products. First, products that are to be used in sex should not be separated from sexual excitement and pleasure. Second, products should be promoted and used for positive reasons (sexual enjoyment) rather than negative ones (fear of infection). If the emphasis is on enjoyment rather than disease prevention then the negative association that the male condom has with disease and infidelity need not rub off on other products. Finally, in the context of sex inequality in patriarchal cultures (which is not likely to change radically in the short term) some emphasis on male enjoyment might lead to the use of potential vaginal microbicidal products, thus leading to increased protection of women. Robert Poola James A. G. Whitwortha Gill Greenb Anthony K. Mbonyec Susan Harrisona Graham J. Hartd Joanie Wilkinsone

Distrust

Female condom

10.1097/00002030-200009080-00028

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Adherence and its Measurement in Phase 2/3 Microbicide Trials

AIDS and Behavior (2009)

Elizabeth E. Tolley Polly F. Harrison Els Goetghebeur Kathleen M. Morrow Robert Pool

Adherence optimization and measurement have emerged as critically challenging issues for clinical trials of topical microbicides. Although microbicide trials have routinely collected adherence data, their utilization in trial design, implementation, and interpretation has been inconsistent. Drawing on data-driven presentations from several focused meetings, this paper synthesizes lessons from past microbicide trials and provides recommendations for future trials of microbicide and other HIV prevention technologies. First, it describes four purposes for adherence data collection, with particular attention to intention-to-treat versus adherence-adjusted analyses for determining effectiveness. Second, the microbicide field's experiences with adherence measures and data collection modes are discussed, including the strengths and weaknesses of various options and approaches for improving measurement. Then, several approaches to optimizing trial participants' adherence are presented. The paper concludes with a set of recommendations for immediate use or further research.

10.1007/s10461-009-9635-x

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Focused antenatal care (ANC): The four-visit ANC model outlined in WHO clinical guidelines.

V. W. Andrew Erin Pell Christopher Angeline Angwin Alma Auwun Job Daniels

10.1371/journal.pone.0093025.t001

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End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

BMC Palliative Care (2011)

Marjolein Gysels Christopher Pell Lianne Straus Robert Pool

End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

CINAHL

PsycINFO

End-of-Life Care

Grading (engineering)

10.1186/1472-684x-10-6

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Citations (97)

Systematic Review of the Primary Research on Minority Ethnic Groups and End-of-Life Care From the United Kingdom

Journal of Pain and Symptom Management (2011)

Natalie Evans Arantza Meñaca Erin V. W. Andrew Jonathan Koffman Richard Harding

End-of-Life Care

Kingdom

10.1016/j.jpainsymman.2011.04.012

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Citations (73)

The negotiation of sexual relationships among school pupils in south-western Uganda

AIDS Care (2001)

Stella Nyanzi Robert Pool John Kinsman

The objective of the study was to explore how school-going adolescents in south-western Uganda negotiate sexual relationships. Qualitative data were obtained from 15 boys and 15 girls (14-18 years old), during a series of role plays, focus group discussions and one-to-one interviews. A questionnaire was administered to 80 pupils (12-20 years old) from the same school. Most of the pupils were sexually active. Sexual relationships between boys and girls were mediated by peers. Boys initiated relationships. Exchange played an important role in the negotiation of sexual relationships. Money or gifts were given and received in exchange for sexual favours and to strengthen the relationship. To maximize gains, some adolescents had sexual relationships with adults. Sexual relationships were characterized by ambiguity. Love is intertwined with sexual desire, money and prestige. Girls have to be explicit enough to get a good deal; if they are too explicit they will be stigmatized as 'loose' but if they are not interested in money they may be suspected of wanting to spread HIV. Boys try to persuade girls that they have money, but do not want to emphasize this too much. In sexual negotiations a boy must persuade a girl that although he is modern and sophisticated (i.e. experienced) he does not chase after every girl; the girl does not want to come over as an unsophisticated virgin, but does not want to give the impression that she is loose either. There is a tension between the traditional ideal of female chastity and submissiveness and the modern image of sexual freedom. Multiple partnerships were highly valued as a sign of sophistication. Condoms were not considered important. Interventions aimed at reducing the spread of HIV do not seem to be having an effect on the behaviour of this group of adolescents. On the contrary, risky attitudes and behaviour are part of an adolescent ideal of modernity and sophistication. New approaches are needed to persuade this group of the need for change. Shifting the source of interventions from adults to the adolescents themselves, encouraging girls to try other means of earning money and debunking the idea that having many partners is sophisticated may be productive alternatives.

Girl

Prestige

Sexual relationship

10.1080/09540120020018206

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Citations (193)

Breastfeeding practices and attitudes relevant to the vertical transmission of HIV in rural south-west Uganda

Annals of Tropical Paediatrics (2001)

Robert Pool Stella Nyanzi James Whitworth

Breastfeeding has been associated with a doubling of the risk of HIV transmission. In developed countries, it is recommended that HIV-positive women do not breastfeed, but this is not a feasible option in most of Africa. It is therefore important to know the extent to which breastfeeding practices are amenable to change. To study this, we carried out 24 focus group discussions with 208 women attending maternity clinics in three rural sites in rural south-west Uganda. Breastfeeding starts from a few minutes to a few days after delivery; most women reported starting after 2 days. The main reason for delay is lack of milk or that the breasts are 'blocked'. Most women thought that this delay was good for the baby, or at least not harmful. Almost all women reported giving the child a soup made of boiled mushrooms before starting to breastfeed. Once they have started breastfeeding, various supplementary foods are gradually introduced at 4-6 months. Women thought that ideally breastfeeding should last for 2-3 years, but in practice most stopped after 18 months. The father and his female relatives generally decide when the child should be weaned. The women thought that commercial milk formula foods were good but could not use them because they are too expensive and anyway unavailable in rural areas. Most women were unaware that HIV could be passed to the child through breastfeeding. Various practices identified as potentially risky are common in this population. Artificial feeding is not a viable option in this area, and although women were prepared to make sacrifices to prevent vertical transmission of HIV, practices are deeply ingrained in traditional culture and will need to be addressed in future interventions. Male partners will also need to be involved.

10.1080/02724930120058179

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Citations (24)

Post-ART Symptoms Were Not the Problem: A Qualitative Study on Adherence to ART in HIV-Infected Patients in a Mozambican Rural Hospital

PLoS ONE (2015)

María Maixenchs Helena Boene Rui Anselmo Carolina Mindú Pedro L. Alonso

Objective The objective of this qualitative study was to explore how clinical symptoms may affect adherence to antiretroviral therapy (ART) in HIV patients, and to explore factors, perceptions and attitudes related to adherence to therapy. Design A qualitative study was carried out in the context of the prospective cohort study “Evaluation of Immune Reconstitution Following Initiation of Highly Active Antiretroviral Treatment in Manhiça, Mozambique”. In-depth Interviews were conducted twice in a sub-sample of the study cohort (51 participants), at six-month intervals. Results Most participants (73%) knew that AIDS is a chronic disease and that ART does not cure it. Nine participants (18%) were non-adherent at some point and two (4%) abandoned ART. All participants but five reported having symptoms after starting ART, mainly attributed to pills needing time to act and body’s reaction to the treatment. In spite of the perceived severity of the symptoms, only two people reported they discontinued the treatment due to symptoms. Almost all participants reported feeling comfortable with the HIV clinic organization and procedures, but afraid of staff being hostile if they did not follow the rules or if the health worker visited their home. Family was one of the most important source of support according participants. Almost all participants with children said that a decisive factor to follow the treatment was the desire to be able to look after them. Conclusions Experiencing symptoms after starting treatment was not a barrier to adherence to ART. Factors related to adherence included control measures set up by the health facility (exhaustive follow up, support, information) and family and community support. Indirect ART-related expenses did jeopardise adherence.

10.1371/journal.pone.0137336

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Mobility, sexual networks and exchange amongbodabodamenin southwest Uganda

Culture Health & Sexuality (2004)

Stella Nyanzi Barbara Nyanzi Bessie Kalina Robert Pool

In order to examine the sexual behaviour of a highly mobile social group, qualitative data and quantitative data were elicited from 212 private motorbike taxi-men, locally called bodabodamen, from two study sites in Masaka, Uganda. Selection criteria were availability and willingness to participate in the study. Research techniques employed were a questionnaire, focus group discussions, in-depth interviews and case studies. Findings indicate that bodabodamen are a highly mobile group who engage in frequent seasonal rural-urban migration. Consequent to this, bodabodamen have a wide network of both occasional and regular sexual partnerships. Both serial and concurrent multiple partnerships are with adults, youths, widows, students, sugar-mummies, barmaids, commercial sex workers, tailors. Exchange plays a significant role in sexual negotiations but the act of giving to a sexual partner is ambivalent in its social interpretation. Since bodabodamen have regular access to cash, they have higher bargaining power for sex. Implications for HIV/AIDS prevention are discussed.

Transactional sex

Qualitative property

10.1080/13691050310001658208

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Citations (51)