Enrolling HIV-positive adolescents in mental health research: A case study reflecting on legal and ethical complexities.

BACKGROUND: Adolescents living with HIV are an emerging group in the global HIV/AIDS epidemic. Mental health in this population affects HIV care, treatment, consequential morbidity and secondary transmission. There is a paucity of research regarding these youth in South Africa (SA), partly because section 71 of the National Health Act of 2003 (NHA) requires parental or guardian's consent. OBJECTIVE: To explore legal and ethical issues related to conducting adolescent mental health research in SA. METHODS: After obtaining a High Court order permitting research on minors aged <18 years without prior parental or guardian's consent, we used qualitative and quantitative methods to interview adolescents in five clinics serving HIV-positive adolescents in Johannesburg. RESULTS: Our study enrolled 343 participants; 74% were orphaned and did not have legal guardians, 27% were symptomatic for depression, anxiety or post-traumatic stress disorder, 24% were suicidal, and almost 90% did not feel that they belonged in the family with which they lived. Without court intervention, most of the participants could not have participated in this research because parental consent was impossible to obtain. This case study argues for exceptions to the parental consent requirement, which excludes orphaned and vulnerable children and youth from research. CONCLUSIONS: Recommendations are made to promote ethical integrity in conducting mental health research with adolescents. A balance is needed between protecting adolescents from exploitation and permitting access to benefits of research. Requiring parental consent for all research does not necessarily give effect to policy. For the vast majority of SA HIV-positive adolescents, parental consent is not possible. Section 71 of the NHA ought to be amended to facilitate valuable and necessary research concerning HIV-positive orphan children and adolescents.

Justice or Injustice: a History and Critique of the New York State Justice Center for the Protection of People with Special Needs.

The creation of the New York State Justice Center for the Protection of People with Special Needs ("Justice Center") was announced with great fanfare in 2013. Its goal is laudable: strengthening and standardizing "the safety net for vulnerable persons, adults and children alike, who are receiving care from New York's human service agencies and programs." Its jurisdiction is broad: covering residential and non-residential programs and provider agencies that come within the purview of six state oversight agencies, namely, the Office of Mental Health, the Office for People with Developmental Disabilities, the Office of Alcohol and Substance Abuse Services, the Office of Children and Family Services, the Department of Health, and the State Education Department. Its powers are comprehensive: investigating allegations of abuse, neglect, and significant incidents, and disciplining individuals and agencies pursuant to administrative authority. In addition, it can prosecute crimes of neglect and abuse pursuant to criminal prosecutorial authority. Given that over 270,000 vulnerable children and adults live in residential facilities overseen by the state and that numerous other individuals receive services from "day programs operated, licensed[,] or certified by the state[,]" the creation of the Justice Center is consistent with New York's history of oversight of vulnerable individuals. The state has overseen various state and municipal programs and private organizations that have addressed the needs of vulnerable individuals practically since New York's first poorhouse opened in 1736. The development of that oversight has been a series of responses to perceived deficiencies of an existing system, and the creation of the Justice Center is, much in the same way, a response to a 2011 study commissioned by the Governor to examine the treatment and care of vulnerable adults. The Justice Center's jurisdiction reflects a departure, however, from traditional oversight. State administrative and regulatory review has been carried out by specialized state agencies established during the late nineteenth and twentieth centuries to address specific categories of individuals receiving care and treatment according to their needs. Residential and day treatment programs, as well as their custodians and employees, have been disciplined for abuse and neglect in accordance with state regulations created by these agencies. Criminal prosecutions have also been referred to county district attorneys. The Justice Center unites all specialized agencies, all vulnerable individuals with diverse needs, and all custodians and employees trained to meet those needs under one additional layer of uniform rules and regulations, with potential administrative discipline, civil liability, and criminal prosecution also under the same umbrella. This article explores the history of state oversight in New York and the departure represented by the Justice Center. This article first traces the early history of oversight. It then discusses the role of the Commission on Quality of Care for the Mentally Disabled, an antecedent organization similar to the Justice Center. Next, it examines the Justice Center itself. Last, this article concludes with some reflections on the Center.

Human rights dimensions of food, health and care in children's homes in Kampala, Uganda - a qualitative study.

BACKGROUND: More than 14 % of Ugandan children are orphaned and many live in children's homes. Ugandan authorities have targeted adolescent girls as a priority group for nutrition interventions as safeguarding nutritional health before pregnancy can reduce the chance of passing on malnutrition to the offspring and thus future generations. Ugandan authorities have obligations under international human rights law to progressively realise the rights to adequate food, health and care for all Ugandan children. Two objectives guided this study in children's homes: (a) To examine female adolescent residents' experiences, attitudes and views regarding: (i) eating patterns and food, (ii) health conditions, and (iii) care practices; and (b) to consider if the conditions in the homes comply with human rights standards and principles for the promotion of the rights to adequate food, health and care. METHODS: A human rights-based approach guided the planning and conduct of this study. Five children's homes in Kampala were included where focus group discussions were held with girls aged 12-14 and 15-17 years. These discussions were analysed through a phenomenological approach. The conditions of food, health and care as experienced by the girls, were compared with international standards for the realisation of the human rights to adequate food, health and care. RESULTS: Food, health and care conditions varied greatly across the five homes. In some of these the girls consumed only one meal per day and had no access to clean drinking water, soap, toilet paper and sanitary napkins. The realisation of the right to adequate food for the girls was not met in three homes, the realisation of the right to health was not met in two homes, and the realisation of the right to care was not met in one home. CONCLUSIONS: In three of the selected children's homes human rights standards for food, health or care were not met. Care in the children's homes was an important contributing factor for whether standards for the rights to adequate food and health were met.

Evidence acquisition and evaluation for a U.S. Government Evidence Summit on Protecting Children Outside Family Care.

Recognizing the need for evidence to inform policies, strategies, and programs to care for vulnerable children, the U.S. Government convened an Evidence Summit on Protecting Children Outside of Family Care on December 12-13, 2011, in Washington, DC, USA. This paper summarizes the background and methods for the acquisition and evaluation of the evidence used to achieve the goals of the Summit. A multistep process was undertaken to identify the appropriate evidence for review. It began by identifying crucial focal questions intended to inform low and middle income governments and the U.S. Government about effective systems for protecting children outside family care. This was followed by a systematic attempt to gather relevant peer reviewed and gray literature that would inform these focal questions. The search processes, methods used for screening and quality reviews are described. In addition, members of the Evidence Review Teams were invited to add relevant papers not identified in the initial literature review to complete the bibliographies. These teams were asked to comply with a specific evaluation framework for recommendations on practice and policy based on both expert opinion and the quality of the data. This was the first U.S. Government Evidence Summit originating in the U.S. Agency for International Development Global Health Bureau and valuable lessons were learned on the identification and assessment of evidence informing complex development challenges.

Releasing mother's burdens: child abandonment and retrieval in Madrid, 1890-1935.

In nineteenth-century Europe, the foundling hospital grew beyond its traditional purpose of mitigating the shame of unwed mothers by also permitting widows, widowers, and poor married couples to abandon their children there temporarily. In the Foundling Hospital of Madrid (FHM), this new short-term abandonment could be completely anonymous due to the implementation of a wheel­a device on the outside wall of the institution that could be turned to place a child inside­which remained open until 1929. The use of survival-analysis techniques to disentangle the determinants of retrieval in a discrete framework reveals important differences in the situations of the women who abandoned their children at the FHM, partly depending on whether they accessed it through the Maternity Hospital after giving birth or they accessed it directly. The evidence suggests that those who abandoned their children through the Maternity Hospital retrieved them only when they had attained a certain degree of economic stability, whereas those who abandoned otherwise did so just as soon as the immediate condition prompting the abandonment had improved.

Orphans and political instability.

OBJECTIVE: This study investigates the security implications of growing orphan populations, particularly in Sub-Saharan Africa. Little has been written about the security implications of this especially vulnerable group of children. Are growing orphan populations associated with increases in political instability as has been suggested? METHOD: Using data from several sources, we employ regression analysis to test whether Sub-Saharan African countries with larger proportions of orphans and those with increasing orphan populations experience higher rates of political instability. RESULTS: We find that the increase in the orphan population is related to an increasing incidence of civil conflict, but do not find a similar relationship for the proportion of orphans. In addition, we find that the causes of orphanhood matter. CONCLUSIONS: We conclude that increases in orphan populations (rather than simple proportions) are destabilizing. We suggest possible avenues for mediating the security risks posed by growing orphan populations.

The role of the Toronto Girls' Home, 1863-1910.

It has been suggested that the role of Ontario children's homes, who had for half a century been helping disadvantaged children, changed significantly and immediately under the 'Children's Protection Act of 1893'. However, the records of the girls admitted to Toronto Girls' Home from 1863 to 1910 suggest that this was not the case, for this home at least. For most of their history, their core clientele was the children of poor respectable parents dealing with a crisis or who could not both work and care for their children. Thus, although prior to 1893 they did also care for a significant number of neglected children, and after 1893 fewer such children were admitted, the Home continued for more than 20 years to help families as they always had, providing a form of family support for which the child protection system was not designed.

Child fostering chains among Ovambo families in Namibia, Southern Africa.

Childcare across sub-Saharan Africa is often socially distributed among adults, with care by the biological mother being one of several options available for children. Children typically move within and outside of large extended kin networks. Based on an ethnographic study of four Ovambo families in Namibia, this article seeks to understand the cultural logic of fostering. Several themes that emerged from the study are discussed here, including the varied motivations of fostering, the cultural scripts of equality, and the rules of reciprocity in exchange, which are involved. Education shapes a mother's choices of care-giving and creates both a supply of children and a demand on households. The implications for HIV/AIDS orphans are discussed.

The impact of the HIV/AIDS epidemic on kinship resources for orphans in Zimbabwe.

The extended family has been recognized as a major safety net for orphans in sub-Saharan Africa. However, the mortality crisis associated with HIV/AIDS may drastically reduce the availability of relatives and thus undermine traditional forms of mutual support. In this article, the microsimulator SOCSIM is used to estimate and project quantities such as the number of living uncles, aunts, siblings, and grandparents available to orphans. The model is calibrated to the setting of Zimbabwe, using data from demographic and Health Surveys and estimates and projections of demographic rates from the United Nations. The article shows that there is a lag of more than ten years between the peak in orphanhood prevalence and the peak in scarcity of grandparents for orphans. The results indicate that a generalized HIV/AIDS epidemic has a prolonged impact on children and orphans that extends well beyond the peak in mortality. A rapid increase in the number of orphans is followed by a steady reduction in the number of living grandparents for orphans. Consequently, the burden of double orphans (both of whose parents have died) is likely to shift to uncles and aunts. In Zimbabwe, the number of living uncles and aunts per double orphan decreased between 1980 and 2010, but it is expected to increase progressively during the next few decades. Changes in kinship structure have important social consequences that should be taken into account when seeking to address the lack of care for orphans.

Growing up without parents: socialisation and gender relations in orphaned-child-headed households in rural Zimbabwe.

The most distressing consequences of the HIV/AIDS pandemic's impact on children has been the development of child-headed households (CHHs). Child 'only' households challenge notions of the ideal home, family, and 'normal' childhood, as well as undermining international attempts to institute children's rights. The development of these households raises practical questions about how the children will cope without parental guidance during their childhood and how this experience will affect their adulthood. Drawing on ethnographic research with five child heads and their siblings, this article explores how orphaned children living in 'child only' households organise themselves in terms of household domestic and paid work roles, explores the socialisation of children by children and the negotiation of teenage girls' movement. Further, it examines whether the orphaned children are in some way attempting to 'mimic' previously existing family/household gender relations after parental death. The study showed that all members in the CHHs irrespective of age and gender are an integral part of household labour including food production. Although there is masculinisation of domestic chores in boys 'only' households, roles are distributed by age. On the other hand, households with a gender mix tended to follow traditional gender norms. Conflict often arose when boys controlled teenage girls' movement and sexuality. There is a need for further research on CHHs to better understand orphans' experiences, and to inform policy interventions.

The business of relief work: a Victorian Quaker in Constantinople and her circle.

This article explores how Victorian notions of charity translated to evangelical mission projects in the Near East. Focusing on Quaker philanthropist Ann Mary Burgess, it traces the trade networks that she established to serve the Armenian community living in the Ottoman Empire. Burgess's vast network of supporters throughout Britain, Europe, and the Near East enabled her to fund relief projects using profits from goods produced by the orphans and widows served by the Friends' Constantinople Mission. The mapping of these networks reveals the evolving relationship between evangelicalism, the humanitarian movement, and the marketplace in imperial Britain.

Legal assessment of current situation on orphan patients in Lithuania.

After Lithuania joined the European Union, the Regulation (EC) No. 141/2000 on orphan medicinal products and Commission Regulation (EC) No. 847/2000 came into force as part of national legislation. Member States must adopt specific measures to increase knowledge on rare diseases and to improve their detection, diagnosis, and treatment. The aim of this article was to present and to assess the current legal situation on orphan patients and their treatment in Lithuania, to identify legislation gaps, and to propose some ideas how to facilitate the solution of the existing problems in this field. For this purpose, European Union and Lithuanian legal documents on rare medicinal products are examined using a comparative method. With reference to inventory of Member States' incentives for rare diseases in national level, the most important issues, which orphan patients face to in Lithuania, are singled out. In Lithuania, the situation of orphan patients in terms of protection of patient rights is insufficiently determined. The access to effective health care services or approved therapies in some cases is restricted. Working relationships between genetic services and various clinical specialists as well as with those in primary care are not legally determined; the number of clinical trials aimed at orphan medicinal products is low. These results suggest a need for awareness raising among Lithuanian Government, health care specialists, patient organizations about the importance to improve practical implementation of European Union legislation and progressive experience of some European countries in this field.

Algerian orphans and colonial Christianity in Algeria, 1866-1939.

This article considers the exceptional fate of the orphan survivors of the great Algerian demographic crisis of the late 1860s who subsequently converted to Catholicism. Using a prosopographical approach, this study seeks to highlight the complexities of national identity in France and to explore some of the racial tensions emerging in Algeria in the late nineteenth century.