"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.

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.

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.