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PubMed2006

Orphan care in Botswana's working households: growing responsibilities in the absence of adequate support.

OBJECTIVES: Botswana has one of the world's highest HIV-prevalence rates and the world's highest percentages of orphaned children among its population. We assessed the ability of income-earning households in Botswana to adequately care for orphans. METHODS: We used data from the Botswana Family Health Needs Study (2002), a sample of 1033 working adults with caregiving responsibilities who used public services, to assess whether households with orphan-care responsibilities encountered financial and other difficulties. Thirty-seven percent of respondents provided orphan care, usually to extended family members. We applied logistic regression models to determine the factors associated with experiencing problems related to orphan caregiving. RESULTS: Nearly half of working households with orphan-care responsibilities reported experiencing financial and other difficulties because of orphan care. Issues of concern included caring for multiple orphans, caring for sick adults and orphans simultaneously, receiving no assistance, and low income. CONCLUSIONS: The orphan crisis is impoverishing even working households, where caregivers lack sufficient resources to provide basic needs. Neither the public sector nor communities provide adequate safety nets. International assistance is critical to build capacity within the social welfare infrastructure and to fund community-level activities that support households. Lessons from Botswana's orphan crisis can provide valuable insights to policymakers throughout sub-Saharan Africa.

Adolescent↗
PubMed1996

Supporting children in need through a community-based orphan visiting programme.

There is an urgent need for programmes to be established to support the growing number of orphans in countries severely affected by AIDS. Most orphans are being cared for by extended families under difficult circumstances. Few descriptions of community-based orphan support programmes exist. We describe one such programme established in Zimbabwe in 1993. Twenty-five volunteers identified 300 orphan households. During one year, volunteers made 1725 home visits and 123 households received an average of $11 in material support or school fees. In 292 orphan households there were 702 orphans, 14.7% of children under 15 years in the area. The rate of parental deaths was increasing with 3.5% of households in the area having a parental death in 1994. Forty-five per cent of caregivers were grandparents and 33% of caregivers were over 60 years. Three per cent of orphans were cared for by adolescent siblings. The poorest orphan households were those in receipt of school fees, with out-of-school children or with an older sibling as caregiver. Community members initiated activities to help orphans. The programme described is targeted, effective and replicable. Community-based organizations such as local churches and women's groups can be mobilized to administer programmes which provide support to the poorest orphan households.

Acquired Immunodeficiency Syndrome↗
PubMed1997

Perceptions of children and community members concerning the circumstances of orphans in rural Zimbabwe.

Focus group discussions and interviews were held with 40 orphans, 25 caretakers and 33 other community workers from a rural area near Mutare, Zimbabwe. Orphan concerns included feeling different from other children, stress, stigmatization, exploitation, schooling, lack of visits and neglect of support responsibilities by relatives. Many community members, while recognizing their limitations due to poverty, were already actively helping orphans and caretakers. Extended family networks are the primary resource for orphans, though some relatives exploit orphans or fail to fulfil their responsibilities. Interventions are suggested which support community coping mechanisms by strengthening the capacities of families to care for orphans. Outside organizations can develop partnerships with community groups, helping them to respond to the impact of AIDS, by building upon existing concern for orphan families. They can help affected communities to develop orphan support activities which encourage caring responses by community leaders and relatives and which discourage property-grabbing and orphan neglect. Material support channelled through community groups to destitute families at critical times can strengthen family coping mechanisms. Income-generating activities should build upon communities' existing capabilities and benefit the most vulnerable orphan households. Some communities are responding to the AIDS disaster by adaptations to cope with devastating changes taking place in their communities.

Acquired Immunodeficiency Syndrome↗
PubMed2003

Health and nutritional status of orphans <6 years old cared for by relatives in western Kenya.

One of the consequences of the HIV/AIDS epidemic in sub-Saharan Africa is the increase in the number of orphans, estimated to have reached 6-11% of children <15 years old in 2000. Orphans who stay in their communities may be at increased risk for poor health due to reduced circumstances and loss of parental care. We have used data from a population-based study in rural western Kenya to compare basic health and nutritional indicators between non-orphaned children <6 years old and children who lost either or both of their parents. In June 2000, all children <6 years old who had been recruited for a cross-sectional survey in 60 villages of Rarieda Division, western Kenya, in June 1999 were invited to return for a follow-up survey. Basic demographic characteristics, including the vital status of the child's parents, and health histories were requested from all 1190 participants of the follow-up survey, along with a finger-prick blood sample for determination of malaria parasite status and haemoglobin (Hb) levels. Height-for-age (H/A) and weight-for-height (W/H) Z-scores were also calculated from anthropometric measurements. Overall, 7.9% of the children had lost one or both their parents (6.4% had lost their father, 0.8% had lost their mother and 0.7% had lost both parents). While there was no difference between orphans and non-orphans regarding most of the key health indicators (prevalence of fever and malaria parasitaemia, history of illness, Hb levels, H/A Z scores), W/H Z-scores in orphans were almost 0.3 standard deviations lower than those of non-orphans. This association was more pronounced among paternal orphans and those who had lost a parent more than 1 year ago. These results suggest that the health status of surviving orphans living in their community is similar to that of the non-orphan population, but longitudinal cohort studies should be conducted to determine better the overall impact of orphanhood on child health.

Child Welfare↗
PubMed2002

Psychological well-being of orphans in Dar El Salaam, Tanzania.

UNLABELLED: Forty-one orphans whose fathers and/or mothers had died from AIDS, and were living in the poor suburbs of Dar Es Salaam, Tanzania, were compared with 41 matched non-orphans from the same neighbourhoods. The subjects were given an arithmetic test and a semi-structured questionnaire concerning any internalizing problems, their attendance at school and their experiences of punishment, reward and hunger. The scale of internalizing problems comprised 21 items adapted from the Rand Mental Health and Beck Depression Inventories concerning mood, pessimism, somatic symptoms, sense of failure, anxiety, positive affect and emotional ties. Most orphans lived with aunts and uncles. Compared with non-orphans, they were significantly less likely to be in school but those who did attend school had similar arithmetic scores. Significantly more orphans went to bed hungry. Orphans had markedly increased internalizing problems compared with non-orphans (p < 0.0001) and 34% reported they had contemplated suicide in the past year. Multiple regression analysis indicated that the independent predictors of internalizing problem scores were sex (females higher than males), going to bed hungry, no reward for good behaviour, not currently attending school, as well as being an orphan. CONCLUSION: The orphans not only had unmet basic needs, but also had markedly increased internalizing problems, thus their long-term mental health would be in jeopardy. There is an urgent need to expand and improve current intervention programmes not only to meet the basic needs but also to include psychosocial support, counselling services for the orphans, and training for their carers and teachers.

Adolescent↗
PubMed2003

An evolutionary analysis of orphan genes in Drosophila.

Orphan genes are protein-coding regions that have no recognizable homolog in distantly related species. A substantial fraction of coding regions in any genome sequenced consists of orphan genes, but the evolutionary and functional significance of orphan genes is not understood. We present a reanalysis of the Drosophila melanogaster proteome that shows that there are still between 26% and 29% of all proteins without a significant match with noninsect sequences, and that these orphans are underrepresented in genetic screens. To analyze the characteristics of orphan genes in Drosophila, we used sequence comparisons between cDNAs retrieved from two Drosophila yakuba libraries and their corresponding D. melanogaster orthologs. We find that a cDNA library from adults yields twice as many orphan genes as such a library from embryos. The orphan genes evolve on average more than three times faster than nonorphan genes, although the width of the evolutionary rate distribution is similar for the two classes. In particular, some orphan genes show very low substitution rates that are comparable to otherwise highly conserved genes. We propose a model suggesting that orphans may be involved in the evolution of adaptive traits, and that slow-evolving orphan genes may be particularly interesting candidate genes for identifying lineage-specific adaptations.

Animals↗
PubMed2006

Barriers and incentives to orphan care in a time of AIDS and economic crisis: a cross-sectional survey of caregivers in rural Zimbabwe.

BACKGROUND: Africa is in an orphan-care crisis. In Zimbabwe, where one-fourth of adults are HIV-positive and one-fifth of children are orphans, AIDS and economic decline are straining society's ability to care for orphans within their extended families. Lack of stable care is putting thousands of children at heightened risk of malnourishment, emotional underdevelopment, illiteracy, poverty, sexual exploitation, and HIV infection, endangering the future health of the society they are expected to sustain. METHODS: To explore barriers and possible incentives to orphan care, a quantitative cross-sectional survey in rural eastern Zimbabwe asked 371 adults caring for children, including 212 caring for double orphans, about their well-being, needs, resources, and perceptions and experiences of orphan care. RESULTS: Survey responses indicate that: 1) foster caregivers are disproportionately female, older, poor, and without a spouse; 2) 98% of non-foster caregivers are willing to foster orphans, many from outside their kinship network; 3) poverty is the primary barrier to fostering; 4) financial, physical, and emotional stress levels are high among current and potential fosterers; 5) financial need may be greatest in single-orphan AIDS-impoverished households; and 6) struggling families lack external support. CONCLUSION: Incentives for sustainable orphan care should focus on financial assistance, starting with free schooling, and development of community mechanisms to identify and support children in need, to evaluate and strengthen families' capacity to provide orphan care, and to initiate and support placement outside the family when necessary.

Acquired Immunodeficiency Syndrome↗
PubMed2001

Policy implications of the inadequate support systems for orphans in western Kenya.

This paper describes the support systems available for orphans in a rural Luo community in Nyang'oma sub-location in Bondo District of Western Kenya. Qualitative data were collected through in-depth interviews with orphaned children and their caretakers as well as key informants, and through focus group discussions with orphaned children, widows and community elders. Quantitative data were obtained by questionnaires administered to 100 caretakers of orphaned children. The most serious problem was inability of the orphan households to afford school fees, although lack of food, medicare and clothing were also prominent. The traditional, kinship-based support systems made a major contribution to catering for the orphans though the resources were far from enough. Various community-based groups in the area did not contribute significantly. The problem is getting desperate due to a combination of an exponentially increasing prevalence of orphans, poor socio-economic conditions and decline of the traditional support systems. For health planners and policy makers there are two major concerns. In the short term, a big and rapidly growing group of children are without adequate access to health services, while in the long term, the negative consequences for (in particular the girl) orphans' schooling pose a serious threat to the health of their future children. Based on the study findings, two recommendations are made: that the responsible parties address the issue of education for orphans rapidly and sufficiently and with due consideration of their food security and medicare; and that potential community resources such as kinship networks and community groups are mobilised in order to assist in achieving the goal.

Child↗
PubMed2006

Epidemiology of health and vulnerability among children orphaned and made vulnerable by HIV/AIDS in sub-Saharan Africa.

The HIV/AIDS epidemic in sub-Saharan Africa has already orphaned a generation of children, and it is projected that by 2010, 18 million African children under the age of 18 are likely to be orphans from this single cause (UNICEF, 2005, The state of the Worlds Children: Childhood under threat. New York: UNICEF). Results from a Kellogg funded OVC project (Skinner et al., 2004, Definition of orphaned and vulnerable children. Cape Town: HSRC) supported the construct that the loss of either or both parents would indicate a situation of likely vulnerability of children. A key problem in the literature on the impact of orphanhood on the well-being of children, families and communities, is that the focus of assertions and predictions is often on the negative impact on 'AIDS orphans', or households. There are hardly any studies that compare the experiences of orphans with non-orphans. This paper thus attempts to fill that gap. It uses epidemiological data to explore the epidemiology of health and vulnerability of children within the context of AIDS in sub-Saharan Africa. Because of data limitations, only the following aspects are examined: (i) orphan status; (ii) household structure (in particular, grandparent headedness and female-headedness); (iii) illness of parents; (iv) poverty; and (v) access to services, especially schooling, health, social services. While recognizing the limitations of the analysis, data presented in this paper indicates that orphans in sub-Saharan Africa are more vulnerable than non-orphans. The authors conclude with some suggestions for policy makers and programme implementers, highlighting the importance of focusing on interventions that will have maximum impact on the health and well-being of children.

Adolescent↗
PubMed2005

Role of traditional healers in psychosocial support in caring for the orphans: a case of Dar-es Salaam City, Tanzania.

Orphans are an increasing problem in developing countries particularly in Africa; due to the HIV/AIDS pandemic; and needs collective effort in intervention processes by including all stakeholders right from the grass roots level. This paper attempts to present the role of traditional healers in psychosocial support for orphan children in Dar-es-Salaam City with special focus on those whose parents have died because of HIV/AIDS. Six traditional healers who were involved in taking care of orphans were visited at their "vilinge" (traditional clinics). In total they had 72 orphans, 31 being boys and 41 being girls with age range from 3 years to 19. It was learned that traditional healers, besides providing remedies for illnesses/diseases of orphans, they also provided other basic needs. Further, they even provided psychosocial support allowing children to cope with orphan hood life with ease. Traditional healers are living within communities at the grass roots level; and appear unnoticed hidden forces, which are involved in taking care of orphans. This role of traditional healers in taking care of orphans needs to be recognised and even scaling it up by empowering them both in financial terms and training in basic skills of psychosocial techniques in how to handle orphans, in order to reduce discrimination and stigmatisation in the communities where they live.

Adolescent↗
PubMed1998

Strategies for providing care and support to children orphaned by AIDS.

As a result of the severe HIV/AIDS epidemic in sub-Saharan countries such as Zimbabwe, where between 25-30% of the adult population are estimated to be infected, there are a growing number of orphans requiring care and support. Traditionally, orphans have been absorbed within the extended family but this is becoming more difficult because of the large number of young adults dying. The burden of care and support is falling on the very young and the very old. A number of strategies have been introduced to provide this care and support. Institutions, though popular, are very expensive to run, have limited capacity and only really cater for physical needs. Interventions which simply react to those who present to them may not reach the most needy and may encourage dependency. Community-based orphan care has been identified as the best and most cost-effective way of caring for orphans. An example of a community-based orphan visiting programme is presented. In the last six months of 1996, the FOCUS programme's 88 volunteers made a total of 9,634 visits to 3,192 orphans in 798 families at an average cost of US+1.55 per visit. The key elements of such programmes have been identified. They need to be implemented by a community-based organization (CBO) within a defined community. Volunteers should be selected from within the community. They need to be trained and supported as they enumerate orphans, identify the most needy and carry out regular visits. The volunteers should keep records of all their activities. These records can then be used as a basis for monitoring the programme. In order to cope with the increasing number of orphans in resource-poor settings like Zimbabwe, it is essential that such programmes be replicated and scaled up. This not only an economic necessity but is also a way of providing appropriate and effective services to those who need them.

Child↗
PubMed2001

Physiological function of the orphans GCNF and COUP-TF.

Orphan nuclear receptors are members of the nuclear receptor superfamily of ligand-activated transcription factors for which ligands and functions have not been identified. Since the cloning of the original orphans, ligands have been identified for several orphan receptors that heterodimerize with the retinoid X receptor and are no longer classified as orphan receptors. Considering the central role that nuclear receptors play in differentiation, development, metabolic regulation, homeostasis and disease, it is crucial that we understand the roles of the remaining orphans. However, the identification of ligands for those orphans that form homodimers has proven more difficult. Thus, to gain greater insight into the functions of orphan receptors, gene targeting has been used to knock out these factors and study mouse development in their absence. Here we will review the progress made in understanding the roles of the orphans GCNF and the COUP-TFs with the use of gene knockouts.

Animals↗
PubMed1998

The genomic structure and chromosomal location of the human TR2 orphan receptor, a member of the steroid receptor superfamily.

Human TR2 orphan receptor, isolated from the testis and prostate, is a member of the steroid/thyroid hormone receptor superfamily. With the screening of a human genomic library and the combination of primer walking and PCR sequencing, we found that the entire TR2 orphan receptor gene coding region and 5'-untranslated region feature 13 introns and 14 exons, and that the consensus splice sequences (GT-AG) are present in all intron-exon boundaries. Within the region that codes for the DNA binding domain, TR2 orphan receptor gene has a distinct intron-exon junction. Whereas all other known steroid receptors have one splice site that separates their first and second zinc fingers in the DNA binding domain, TR2 orphan receptor has a rare splice site located in the middle of its first zinc finger. The identification of specific junction sequences for potential alternative splicing sites helps to explain the existence of multiple forms of TR2 orphan receptor cDNA (TR2-5, 7, 9, 11). The S1 nuclease protection assay for TR2 message revealed that there are multiple transcription initiations, and that the major cap site surrounded by an initiator-like sequence is located at the 104th nucleotide upstream from the translation start codon. Sequence analysis of a 2.7-kb DNA fragment upstream of the TR2 orphan receptor translation start codon unveiled several potential cis-acting elements, such as AP-1, HNF-5, GATA1 binding sites, and GC boxes. Using fluorescence in situ hybridization combined with a high-resolution G-banding technique, we found that the TR2 orphan receptor gene was mapped to human chromosome 12 at band q22, whereas the structurally closely related TR4 orphan receptor gene was mapped to human chromosome 3 at band q24.3.

Amino Acid Sequence↗
PubMed1995

Multiple functions of the TR2-11 orphan receptor in modulating activation of two key cis-acting elements involved in the retinoic acid signal transduction system.

The testicular receptor 2 (TR2) orphan receptor binds to hormone response elements (HREs) consisting of two AGGTCA half-site direct repeat consensus sequences (DR) with various spacing in the following order: DR1 > DR2 > DR5 DR4 DR6 > DR3. When binding to natural HREs, TR2 orphan receptor remains flexible with higher binding affinities to (a) cellular retinol-binding protein II promoter region (CRBPIIp) (DR1), SV40 +55 region (DR2), and retinoic acid response element beta (RARE beta) (DR5) than to (b) NGFI-B response element (NBRE) and also to (c) the palindromic thyroid hormone response element (TREpal). This wide spectrum of HRE recognition sequences suggests possible versatility of the TR2 orphan receptor in cross-talking with other signal transduction systems. Chloramphenicol acetyltransferase (CAT) assay demonstrates that the TR2 orphan receptor competes with CRBPIIp- and RARE beta-CAT gene expression activated by retinoid X receptor alpha (RXR alpha) and retinoic acid receptor alpha (RAR alpha)/RXR alpha heterodimers, respectively. In addition, this suppression may not be mediated by the formation of heterodimers between TR2 orphan receptor and either RXR alpha or RAR alpha. Instead, a minimum of 100-fold higher affinity of the TR2 orphan receptor for CRBPIIp than RXR alpha may explain why the TR2 orphan receptor dominates RXR alpha in CRBPIIp-CAT activation. Together, our data suggest that the TR2 orphan receptor may be a master regulator in modulating the activation of two key HREs, RARE beta and CRBPIIp, involved in the retinoic acid signal transduction pathway.

Animals↗
PubMed1995

The economics of orphan drug policy in the US. Can the legislation be improved?

This review of the US Orphan Drug Act (ODA) 1983 outlines how the ODA is intended to stimulate orphan drug research and development of drugs for rare diseases. We also evaluate the effectiveness of the ODA in the past decade and provide recommendations for ODA improvements in the future. The economic incentives embedded in the ODA are presented in a simple economic model, in which a guarantee of market exclusivity plays a central role in encouraging firms to pursue the development of orphan products. Some evidence suggests that this provision has been a major impetus for the rise in orphan drug applications and designations in the last decade. Market exclusivity is the key incentive for orphan drug research, and should be retained. Concerns about a limited number of highly successful 'blockbuster' orphan drugs should be evaluated in terms of the useful economic incentives. In the future, exceptionally high profits could be limited by more precise evaluation of disease prevalence, elasticity of demand, and the other uses of orphan compounds. We further recommend an expansion of the ODA tax credits and research grants programme and targeting of 'priority' diseases. We conclude that the ODA has been a valuable legislative initiative, but it can be strengthened with some simple extensions of the current incentives that it contains.

Drug Industry↗
PubMed1991

The Orphan Drug Act. The first 7 years.

The 1983 Orphan Drug Act sought to increase market incentives and decrease regulatory barriers for products used to treat rare ("orphan") diseases. Major provisions included market exclusivity, tax credits, and regulatory process clarifications. This analysis compares pre- and post-Act industry and government data to examine changes associated with the law. While industry sponsored 34 marketed and 24 experimental orphan drugs in the 17 years prior to the Act, it has sponsored 39 of 42 marketed orphan products in the 7 years since the Act. An additional 301 experimental products have orphan designation. While 25 of 40 marketed orphan products reportedly had annual sales of less than $1 million, product sales for three conditions are more than $100 million annually. This prompted changes in the law, passed by Congress in 1990, but vetoed. Overall, the law has been associated with an increase in orphan product development. The law's costs and benefits to companies, patients, and the public should be examined if future changes are proposed.

Drug Industry↗
PubMed1993

Anxiety and autonomy in adolescence among father-orphaned kibbutz children.

The aim of the study was to measure levels of anxiety and autonomy in non-clinically referred kibbutz orphaned and non-orphaned adolescents. The performance of 28 kibbutz adolescents orphaned when aged 2-10 was compared to 42 non-orphaned kibbutz adolescents on the Manifest Anxiety Scale for Israeli Children, the Autonomy of the Child Test and on a general data questionnaire. Results showed that when total populations were considered, no significant differences were found on levels of manifest anxiety and levels of autonomy. When the groups were further broken down according to gender and age, it was found that older orphan girls manifested significantly greater anxiety than any group and significantly lower autonomy than older non-orphan girls. A rationale linking the vulnerability of older orphan girls to adolescent developmental theory is suggested.

Adolescent↗
PubMed2005

Psychological distress among AIDS orphans in rural Uganda.

More than 11 million children under 15 years in sub-Saharan Africa have lost at least one parent to AIDS. In Uganda, about 2 million children are orphans, with one or both parents dead. The objective of this study was to investigate the psychosocial consequences of AIDS orphanhood in a rural district in Uganda and to identify potential areas for future interventions. The study was conducted in a randomly selected sub-county in Bushenyi District in Uganda. The study population consisted of 123 children aged 11-15 years whose parents (one or both) were reported to have died from AIDS and 110 children of similar age and gender living in intact households in the same neighbourhood. Symptoms of psychological distress were assessed using the Beck Youth Inventories of Emotional and Social Impairment (BYI). The standardized interview also included questions concerning current and past living conditions. A multivariate analysis of factors with possible relevance for BYI outcome showed that orphan status was the only significant outcome predictor. Orphans had greater risk (vs. non-orphans) for higher levels of anxiety (odds ratios (OR)=6.4), depression (OR=6.6), and anger (OR=5.1). Furthermore, orphans had significantly higher scores than non-orphans on individual items in the Beck Youth Depression Inventory that are regarded as particularly "sensitive" to the possible presence of a depressive disorder, i.e. vegetative symptoms, feelings of hopelessness, and suicidal ideation. High levels of psychological distress found in AIDS orphans suggest that material support alone is not sufficient for these children.

Acquired Immunodeficiency Syndrome↗