Comparing fears about paediatric HIV disclosure to the lived experiences of parents and guardians: a prospective cohort study.

OBJECTIVE: We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being. DESIGN: We conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status. MAIN OUTCOME MEASURES: We used three waves of data to compare caregivers' pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time. RESULTS: Caregivers' pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure. CONCLUSION: Findings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process.

"Even the fowl has feelings": access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia.

Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and - by denying their circumstances - leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability. Implications for RehabilitationPersons with disabilities are vulnerable to HIV infection but have historically been excluded from HIV and AIDS services, including prevention education, testing, treatment, care and support. Fundamental change is needed to address practical and attitudinal barriers to access, including provider training.Rehabilitation professionals and HIV service providers alike must acknowledge the two-way relationship between HIV and disability: people with disability are vulnerable to HIV infection; people with HIV are increasingly becoming disabled.Peer participation by persons with disabilities in the design and implementation of HIV services is crucial to increasing accessibility.Addressing political will (through the National Strategic Plan for HIV) is crucial to ensuring long-term sustainable change in recognizing and responding to the heightened vulnerability of people with disability to HIV.

The prevalence and process of pediatric HIV disclosure: A population-based prospective cohort study in Zimbabwe.

INTRODUCTION: The objective of this study was to estimate the prevalence of pediatric HIV disclosure in rural Zimbabwe and track the process of disclosure over time. METHODS: We recruited a population-based sample of 372 caregivers of HIV-positive children ages 9 to 15 to participate in a survey about disclosure. Using data from this cross-sectional sample, we then identified a prospective cohort of 123 caregivers who said their HIV-positive child did not know his or her HIV status, and we followed this non-disclosed cohort of caregivers through two additional waves of data collection over the next 12 months. At each wave, we inquired about the timing and process of disclosure and psychosocial factors related to HIV disclosure. RESULTS: The overall prevalence of disclosure in the cross-sectional sample was 66.9% (95% CI 62.0 to 71.5%). Only 26.9% of children knew how they were infected and that they can transmit the virus to others (i.e. "full disclosure"). Older children were more likely to know their status. Among the non-disclosed caregivers at baseline, nearly 60% of these children learned their HIV status over the course of the 12-month study period, but only 17.1% learned how they were infected and that they can transmit the virus to others. Most caregivers were satisfied with their child's disclosure experience. Caregivers who had not disclosed their child's HIV status to the child worried that disclosure would lead to stigma in the community, provoke questions from their child they would not be able to answer, or cause the child to reject the caregiver in anger. CONCLUSIONS: This study suggests that rates of pediatric HIV disclosure may be larger than typically reported, but also reinforces the idea that most children do not know key details about their illness, such as how they were infected and that they can infect others.

Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia.

INTRODUCTION: Knowledge about experiences in accessing HIV services among persons with disabilities who are living with HIV in sub-Saharan Africa is limited. Although HIV transmission among persons with disabilities in Africa is increasingly acknowledged, there is a need to bring to life the experiences and voices from persons with disabilities living with HIV to raise awareness of programme implementers and policy makers about their barriers in accessing HIV services. This paper explores how the barriers faced by persons with disabilities living with HIV impede their ability to access HIV-related services and manage their disease. METHODS: We conducted focus group discussions with 76 persons (41 females; 35 males) with physical, visual and/or hearing impairments who were living with HIV in Ghana, Uganda and Zambia (2012-2013). We explored challenges and facilitators at different levels (individual, psychosocial and structural) of access to HIV services. Transcripts were analyzed using a framework analysis approach. RESULTS: Persons with disabilities living with HIV encountered a wide variety of challenges in accessing HIV services. Delays in testing for HIV were common, with most waiting until they were sick to be tested. Reasons for delayed testing included challenges in getting to the health facilities, lack of information about HIV and testing, and HIV- and disability-related stigma. Barriers to HIV-related services, including care and treatment, at health facilities included lack of disability-friendly educational materials and sign interpreters, stigmatizing treatment by providers and other patients, lack of skills to provide tailored services to persons with disabilities living with HIV and physically inaccessible infrastructure, all of which make it extremely difficult for persons with disabilities to initiate and adhere to HIV treatment. Accessibility challenges were greater for women than men due to gender-related roles. Challenges were similar across the three countries. Favourable experiences in accessing HIV services were reported in Uganda and Zambia, where disability-tailored services were offered by non-governmental organizations and government facilities (Uganda only). CONCLUSIONS: Persons with disabilities living with HIV encounter many challenges in accessing HIV testing and continued care and treatment services. Changes are needed at every level to ensure accessibility of HIV services for persons with disabilities.

Enrollment of adolescents aged 16-17 years old in microbicide trials: an evidence-based approach.

PURPOSE: This article explores the ethics and feasibility of enrolling adolescent females in microbicide trials using data from 16- to 17-year-old participants of the Phase 3 trial of the candidate vaginal microbicide, Carraguard. METHODS: Secondary analysis was conducted to compare health, behavioral, and operational outcomes between 16- to 17-year-olds and 18- to 19-year-olds screened for and enrolled in the trial. Analytical approaches included Kaplan-Meier survival analysis, Cox proportional hazards modeling, and generalized estimating equations for nonsurvival end points. RESULTS: Results reveal no significant differences between the two age groups for health (sexually transmitted infection, adverse event), risk behavior, or operational (adherence, follow-up) outcomes. However, data suggest that after 1 year of trial participation, human immunodeficiency virus (HIV) and pregnancy incidence were higher and increased more rapidly for the 16- to 17-year-olds than for 18- to 19-year-olds; this finding is entirely consistent with other incidence data for HIV infection among South African youth and cannot be attributed to study participation without a comparison outside the trial. CONCLUSIONS: Data from the Carraguard trial provide no evidence that inclusion of 16- to 17-year-olds in the trial had any detrimental effect on trial participants or on the conduct of research. These data provide an argument motivating the inclusion of sexually active adolescents aged 16-17 years into future trials in order to avoid delaying access to an effective product for adolescents at high risk of HIV acquisition. Careful support for adolescent-inclusive protocols (including appropriate counseling) must be incorporated into study design.

Making the cut: evidence-based lessons for improving the informed consent process for voluntary medical male circumcision in Swaziland and Zambia.

The informed consent (IC) process for voluntary medical male circumcision (VMMC) was evaluated in Zambia and Swaziland as VMMC programs scaled up. In-depth interviews (IDIs) were conducted with clients 1 week after surgery to explore understanding of IC and gauge how expectations of MC surgery compared to actual experiences. In Zambia, key opinion leaders (KOLs) were also interviewed. Some clients equated written IC with releasing the clinic from liability. Most clients felt well prepared for the procedure, although many were surprised by the level of pain experienced during anesthesia and postsurgery. Clients were highly motivated to adhere to wound care, but some were overwhelmed by extensive instructions. Adolescents described barriers to accessing follow-up care and the need for support in overcoming adult gatekeepers. KOLs indicated that IC is not well understood in poorly educated communities. Results led to concrete programmatic changes, including revised patient education materials and more effective anesthesia for longer-lasting pain relief.

How informed are clients who consent? A mixed-method evaluation of comprehension among clients of male circumcision services in Zambia and Swaziland.

Comprehension is fundamental for informed consent--an individual's right to choose a medical procedure, such as male circumcision (MC). Because optimal benefits depend on post-surgical behaviors, comprehension is particularly critical for MC programs. We evaluated clients' comprehension of MC's risks and benefits, wound care instructions, and risk reduction post-MC using a true/false test (n = 1181) and 92 semi-structured interviews (SSIs) in Zambia and Swaziland. Most participants (89% Zambia, 93% Swaziland) passed the true/false test, although adolescents scored lower (significantly so in Swaziland) than adults and one-third (including nearly half of adolescents in Zambia) said MC has no risks. SSIs indicated confusion between "risk" of adverse surgical outcomes and reduced "risk" of HIV; most respondents acknowledged the 6 week abstinence period post-MC, yet few said resuming sex early increases HIV risk. Providers should distinguish between surgical "risks" and reduced HIV "risk," and emphasize that HIV risk increases with sex before complete healing.

Examining dimensions of vulnerability among children in Uganda.

Insufficient data on the nature and extent of children's vulnerability in Uganda has challenged government and donors in priority setting, resource allocation and developing effective approaches to improve well-being. We conducted a population-based survey among a nationally representative sample of 2551 households, covering a total of 7946 children. We engaged national stakeholders in a priority-setting exercise to develop a scoring system to assess dimensions of children's vulnerability. The exercise identified individual and household characteristics to assess vulnerability--many of which had not been measured previously--to which numerical weights representing vulnerability level were assigned. Highly weighted characteristics included maternal death, disability, child labour and pregnancy before age 17. Psychosocial elements included living apart from siblings, having nobody to talk to and never visiting a living parent. According to this approach, an estimated 51.1% of children in Uganda (weighted for national population distribution) are considered critically or moderately vulnerable. It is to these children, equivalent to a national total of 8.7 million, that support services should be prioritised. However, survey data suggest that the most critically vulnerable children are under-represented in several types of support services. This pioneering, participatory methodology provides a rudimentary, but valuable, first step towards quantifying the vulnerability of children in Uganda and assessing their resource needs. It has been used by the Government of Uganda to determine subcategories of vulnerability for resource allocation. A major advantage is that it uses local contextual knowledge of child vulnerability rather than generic criteria applied in international surveys. Further analytical work is required to validate the methodology, link it to child well-being outcomes and devise a practical tool for service providers to refine programme targeting. The approach may be useful to national, regional or local service providers seeking an overview of their client base to monitor and improve programme-targeting efforts.

Improving the lives of vulnerable children: implications of Horizons research among orphans and other children affected by AIDS.

From 1997 through 2007, the Horizons program conducted research to inform the care and support of children who had been orphaned and rendered vulnerable by acquired immunodeficiency syndrome in sub-Saharan Africa. Horizons conducted studies in Kenya, Malawi, Rwanda, South Africa, Uganda, Zambia, and Zimbabwe. Research included both diagnostic studies exploring the circumstances of families and communities affected by human immunodeficiency virus (HIV) and evaluations of pioneering intervention strategies. Interventions found to be supportive of families included succession planning for families with an HIV-positive parent, training and supporting youth as caregivers, and youth mentorship for child-headed households. Horizons researchers developed tools to assess the psychosocial well-being of children affected by HIV and outlined key ethical guidelines for conducting research among children. The design, implementation, and evaluation of community-based interventions for orphans and vulnerable children continue to be a key gap in the evidence base.

Community interventions providing care and support to orphans and vulnerable children: a review of evaluation evidence.

Children affected by HIV in their families and communities face multiple risks to their health, education and psychosocial wellbeing. Community interventions for children who have been orphaned or rendered vulnerable take many forms, including educational assistance, home-based care, legal protection and psychosocial support. Despite a recent influx of funding for programme implementation, there exists little evidence to inform policymakers about whether their investments are improving the lives of vulnerable children and meeting key benchmarks including the Millennium Development Goals. This paper reviews the current evidence base on evaluations of community interventions for orphans and vulnerable children (OVC) in high HIV-prevalence African settings, focusing on studies' methodologies. Sources reviewed include published research studies and evidence from the unpublished programmatic "grey literature" located through database and internet searches. A total of 21 studies, varying in scope and generalisability, were identified. Interventions reviewed address children's wellbeing through various strategies within their communities. Evaluation methodologies reflect quantitative and qualitative approaches, including surveys (with and without baseline or comparison data), costing studies, focus groups, interviews, case studies, and participatory review techniques. Varied study methodologies reflect diverse research questions, various intervention types, and the challenges associated with evaluating complex interventions; highlighting the need to broaden the research paradigm in order to build the evidence base by including quasi-experimental and process evaluation approaches, and seeking further insights through participatory qualitative methodologies and costing studies. Although findings overall indicate the value of community interventions in effecting measurable improvements in child and family wellbeing, the quality and rigour of evidence is varied. A strategic research agenda is urgently needed to inform resource allocation and programme management decisions. Immediate imperatives include building local technical capacity to conduct quantitative and qualitative evaluation research, and strengthening monitoring and evaluation systems to collect process and outcome data (including costing) on key support models. Donors and implementers must support the collection of sound empirical evidence to inform the development and scale-up of OVC programmes.

Protecting children's rights in the collection of health and welfare data.

Program managers and researchers promoting children's rights to health, education, and an adequate standard of living often gather data directly from children to assess their needs and develop responsive services. Gathering information within a participatory framework recognizing children's views contributes to protection of their rights. Extra precautions, however, are needed to protect children because of the vulnerabilities associated with their developmental needs. Using case studies of ethical challenges faced by program implementers and sociobehavioral researchers, this article explores ways in which data collection activities among children may affect their rights. We suggest ways in which rights-based principles may be used to derive safeguards to protect against unintentional harm and abuses, based on a multidisciplinary consultation with researchers and service providers.

Emergency contraception: lessons learned from the UK.

CONTEXT: Since January 2001, women aged over 16 years in the UK have been able to purchase progestogen-only emergency hormonal contraception from pharmacists without prescription. This paper outlines the context in which these changes took place, including contraceptive choices in the UK, changes within the pharmacy profession and political pressures. OBSERVATIONS: We chart the multisectoral developments required to make emergency contraception (EC) available without prescription in the UK, from clinical research findings and results on the views and behaviour of health care professionals and users of EC, through to professional and policy developments, including challenges during and after this process. DISCUSSION: Lessons learnt from the innovative experience of the deregulation of EC in the UK apply to other regions currently considering similar change. We extrapolate internationally applicable lessons including the importance of stakeholder partnership, transparency and cautious pace of change, and the vital role of professional groups. CONCLUSION: Although this change brought a new element of reproductive choice to some women, significant barriers to access to EC still remain for young women and women unable to afford the high price ( 24/euro;37/$39) of pharmacy purchase in the UK.