People in different professional, geographical, or cultural groups are often confused by each other's use of language. Some groups use different words to mean the same thing. Others use the same word but interpret it in different ways. Since this publication is aimed at people working with children and adolescents in a variety of settings, sensitivity and clear communication are required. This section explains technical words and related terms used within this document. Abuse: anything that individuals or institutions do or fail to do that directly or indirectly harms children or damages their prospects for safe and healthy development Additional consent: consent required from adults working with children, such as teachers, clergy, youth workers, and others, to gain access to gather information from children (see Guideline E1) Adolescent: individual in the state of development between the onset of puberty and maturity; definitions vary according to culture and custom (WHO definition is from age 10 through age 19) Age of consent: age at which an individual may give consent to sexual activity with another person Age of majority: age at which an individual becomes a legal adult and gains full legal rights, such as the right to vote Anonymity: conditions under which the identity of the participant is not collected and cannot be traced from the information provided (see Guideline D3) Assent: affirmative agreement of a child (see Guideline E1) Child advocate: independent adult appointed to represent the best interests of a child who cannot legally give consent (see Guideline E4) Child or minor: individual younger than age 18; definitions vary according to culture and custom Community advisory board: committee of local community members and stakeholders responsible for overseeing the design and conduct of activities to protect participants from harm and ensuring that activities are culturally acceptable locally and in accordance with ethical standards; also known as local advisory board (see Part 1, Section 4, and Guideline C3) Confidentiality: conditions under which the information revealed by an individual participant in a relationship of trust will not be disclosed to others without permission (see Guidelines D3 and D7) Consent: affirmative agreement of an individual who has reached the legal age of majority (see Guideline E1) Dissent: disagreement; withholding of consent (see Guideline E1) Do no harm: basic ethical principle stating that the primary concern must always be to protect the participant from harm (see Part 1, Section 1) Ethical standards: principles used to resolve questions that invoke responsibilities for the welfare of others or conflicts among loyalties to different groups Preface iv ! Ethical Approaches to Gathering Information from Children and Adolescents in International Settings Using this publication vi ! Ethical Approaches to Gathering Information from Children and Adolescents in International Settings Using this Publication Aims This publication aims to: • Provide practical guidance to help p...
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.
IntroductionKnowledge 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.MethodsWe 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.ResultsPersons 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).ConclusionsPersons 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.
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.
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.
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