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Understanding the Psychosocial Well-being of Orphans and Vulnerable Children (OVC): The Intersection of Research and Policy

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This paper identifies the demographic and behavioral predictors that influence the psychosocial health of orphans. A study was conducted using data from 1,851 children across six sites in Cambodia, Ethiopia, India, Kenya, and Tanzania, who are enrolled in the Positive Outcomes for Orphans Study (POFO). The quantitative analysis found that maternal orphans, double orphans, and children who engage in labor outside of the home were particularly vulnerable to psychosocial distress. In addition, the multivariate models showed that variations in site and living arrangements were significantly associated with the subjects’ psychosocial outcomes. By synthesizing these findings with literature on orphans and vulnerable children (OVC), this paper recommends forging an international framework for psychosocial programming and tailoring country-level programs to address the individual, social, and cultural predictors of psychosocial distress.

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Zhou, Grace (2012). Understanding the Psychosocial Well-being of Orphans and Vulnerable Children (OVC): The Intersection of Research and Policy . Honors thesis, Duke University. Retrieved from https://hdl.handle.net/10161/5386 .

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Dukes student scholarship is made available to the public using a Creative Commons Attribution / Non-commercial / No derivative (CC-BY-NC-ND) license .

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Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences

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Maureen C. Kelley, Tracy Brazg, Benjamin S. Wilfond, Liliana J. Lengua, Beth E. Rivin, Susanne P. Martin-Herz, Douglas S. Diekema, Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences, International Health , Volume 8, Issue 3, May 2016, Pages 187–196, https://doi.org/10.1093/inthealth/ihw020

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Orphans and vulnerable children (OVCs) represent a significant population worldwide, enduring poor health and living conditions. Evidence-based interventions are needed. However, without parents, ethical concerns about including OVCs in research persist. The aim of our study was to better understand the ethical challenges facing researchers who work with OVCs.

We conducted semi-structured interviews with 12 international pediatric researchers working with OVCs in seven countries. We used descriptive content analysis to characterize the ethical rationale for inclusion and associated challenges.

Researchers believed research was justified as a necessary means for informing evidence-based interventions to benefit OVCs directly or as a population. Ethical challenges included difficulty identifying OVCs given variation among children living without parents; difficulty identifying guardians among a range of caregivers; concerns about meaningfulness of guardian consent; difficulty assessing risk; and responding to children's many needs.

A range of caregivers bear responsibility to protect OVC's interests in place of parents in research but are often not prepared to do so. This places greater burden on researchers to assess risks and respond to children's needs. Findings suggest that we should improve support and rethink the roles of guardians, researchers and older children in research participation and protection.

Orphaned, homeless and other unaccompanied children and young people—often referred to internationally as orphans and vulnerable children, or OVCs—represent a significant but poorly represented global population. UNICEF estimates that there are approximately 153 million orphans worldwide. 1 , 2 Sub-Saharan Africa and Southeast Asia continue to have the highest number of orphaned children due to parental loss from HIV/AIDS, with 17.9 million children estimated to have lost one or both parents to the disease. 1 , 2 In high-income countries, the numbers of unaccompanied children living without parents are still significant relative to available resources and child welfare institutions. For example, the US government estimates that approximately 380 000 children are living without families—that is, living in transient residence, on the street, or in transitional institutions. 3 Thousands of unaccompanied children and young people in Europe have lost or been separated from parents following war and political conflicts in Afghanistan, Iraq and Syria. 2 That we see such varied estimates of unaccompanied children and young people reflects the challenges of mapping and reaching a still largely invisible and transient population.

The health and social impact of living on one's own as a child or teen is significant. These children endure dangerous living conditions, sexual exploitation, violence and exposure to the elements. Equally devastating is the under-reported impact of undiagnosed and untreated childhood illnesses: high rates of preventable infections, lack of access to vaccinations and dental care, treatment and prevention of sexually transmitted diseases, malnutrition, and the long-term psychological impact of stress. 4–8 Innovative, effective solutions to address the social, economic and health conditions in which these children live and struggle are needed. There are many well-meaning humanitarian and governmental organizations, large and small, offering aid to vulnerable children; however, the programs and interventions are varied and often not sufficiently evidence-based. While research can improve the evidence-base, without parents to advocate for their protection and best interests these children are highly vulnerable to exploitation and harm, raising ethical concerns about their inclusion in research. 9–12

For this reason research including OVCs as a target population remains relatively limited when compared to research with general pediatric populations. Whereas inclusion of OVCs in clinical pediatric research with prospects of direct therapeutic benefit to the child is increasingly permitted with the presence of a legal guardian to consent on behalf of the child. Ethical guidance varies between two approaches. The most common approach is to apply the same ethical criteria for the inclusion of all children in research, with no child permitted in research who does not have a parent or guardian to consent on his or her behalf; in this case OVCs might be ruled out for lacking a guardian or in case-by-base, context-specific judgments about the risk-benefit balance for especially vulnerable children. 13–19 This reflects the longstanding view that research protections ought to assume that all children are vulnerable by virtue of their social dependence on parents or guardians and their underdeveloped capacity to understand and appreciate harms and risks. 20 , 21 An emerging approach, taken by countries such as South Africa and the United States, names the population of OVCs as a special vulnerable population and includes additional protections—such as the use of study advocates—that extend beyond general protections designed to safeguard all children. 13 , 14 These tailored protections arose partly in response to concerns about unjustly excluding OVCs from potentially beneficial research in settings with a very high burden of childhood diseases, while recognizing the practical and ethical challenges of inclusion without parents to protect the child’s interests in research.

One concern with the inclusive approach to protection for all children is that it places significant ethical weight on the role of parents, caregivers and guardians to protect a child's interests through the consent process and during ongoing participation in a study. For children living in institutions, temporary foster homes, or other transient social settings, guardians are expected to act in place of parents to ensure that the interests of the child are protected, concerns about participation in the study are expressed, symptoms are reported and so on. In addition, taking the approach that all children are vulnerable and developing ethical guidance and regulation accordingly might potentially overlook special, context-dependent vulnerabilities or ethical challenges that only arise for some children. Other studies on research including OVCs have revealed a number of culturally specific challenges related to assent/consent, the need for allowing direct consent of unaccompanied but independent adolescents, and varying understandings of what constitutes an orphan, guardian or family. 22–26

Given the substantial pediatric research supported by US funding agencies but conducted with populations of vulnerable children internationally, we designed a qualitative interview study with a purposive sample of US, European and South African pediatric researchers who have conducted research with children living as wards of the state or OVCs in compliance with the US Federal Regulations that govern research with this vulnerable group. The objective was to identify and characterize the ethical challenges arising following Ethics Review Board approval and to identify gaps in guidance and regulation, particularly for US investigators working internationally. Our group of experts included pediatric researchers engaged in medical, public health or social science research with children living as wards of the state, orphans, and homeless children and adolescents in seven countries (Table  1 ). Our aims were to gain a contextual understanding of the ethical issues that researchers encounter in practice and to better appreciate the ethical rationale for including OVCs in research from the perspective of those investigating the health and social challenges facing unaccompanied children.

Participant and study demographics

*Several investigators enrolled different ages of children in their studies.

Study design and sampling

We conducted semi-structured qualitative interviews with a purposive sampling of pediatric investigators who have conducted research that enrolled orphans or wards of the state. We relied on literature reviews to characterize the types of studies involving OVCs and to identify a population of investigators for recruitment. The US is one of a few countries that has special government ethics guidance for including OVCs in research (‘wards of the state’) and conducts extensive international pediatric research; therefore, we conducted a literature review to identify US-federally funded grants and other published studies that enrolled children classified as wards of the state or OVCs under the 45 CFR 46.409 protections in the US and internationally (Table  2 and Box 1 ).

Results of literature review

Note: These do not include general pediatric clinical trials that might enroll orphans in addition to children with parents, since this number is not tracked.

OVC: Orphans and vulnerable children.

To inform the conceptual design of the interview study guide, we conducted a conceptual analysis of the literature on pediatric research ethics, international research ethics, and the history of research ethics involving orphans and vulnerable children. We conducted preliminary interviews with four pediatric institutional review board chairs regarding the experience of reviewing research protocols involving wards of the state and OVCs. This informed our interview guide for researchers, but these data are not included here given that only one had sufficient experience reviewing such studies. The interview guide domains included: beliefs and values regarding the ethical rationale for inclusion/exclusion of OVCs in research; experience with study design/enrollment; experience with assent/consent and decision making with guardians; judgments and values on risk/benefit, ancillary care, and compensation. At the end of each interview participants were given the opportunity to share additional thoughts about any issues not covered.

Data collection

We recruited researchers representing a variety of public health, non-profit and academic institutions. We identified pediatric clinical investigators who received US federal funding or were published in the top medical, pediatric and social science journals from 2000–2010. Investigators were identified via the PubMed and RePORT databases ( Box 1 ). A total of 12 investigators were recruited for inclusion in telephone interviews.

Data analysis

TB conducted the interviews. All interviews were transcribed and imported to ATLAS.ti qualitative software to facilitate data analysis. TB and MK were responsible for coding the transcripts, which included an iterative process involving several reviews of the transcripts. Analysis began with organizing the data by concept, then by theme, and eventually by constructing theoretic relationships between concepts and themes present in the data. 27 , 28 A codebook was designed based on a review of a subset of the transcripts and revised iteratively. Codes included the a priori ethical concepts that informed our interview guide as well as emergent concepts and themes from the data. Analytic memos were used to create an audit trail and document the evolution of code definitions, including impressions about the themes emerging from the data. A second round of coding identified themes in the narrative text. Themes included ethical concerns, values, perspectives, conflicts or barriers, and processes for addressing conflicts or barriers in conducting research with OVCs. Coded results were then shared with the expert advisory panel (BW, LL, BR, SMH) for in depth discussion about interpretation of findings. The panel discussed impressions of the results from a multidisciplinary perspective, revised themes, and together decided on the most salient themes vis-à-vis understanding researchers' experience of ethical challenges in research with OVCs.

Ethical considerations

Ethics approval for the study was obtained from the Seattle Children's Research Institute's IRB. Potential participants were contacted by e-mail with a letter explaining the study and asking for permission to schedule a telephone interview. Upon agreement, participants were contacted by follow-up e-mail to arrange a time for the interview. Before the interview portion of our study, all participants were given pre-interview demographic questions to complete, and a consent form to be discussed at the time of the interview. Oral consent was obtained at the beginning of each audio-recorded telephone interview. Detailed participant demographics and mention of specific study details have been omitted to protect researcher confidentiality.

Data are organized by the cross-cutting ethical themes that emerged from researchers' own descriptions of the rationale for including OVCs in research and ethical challenges encountered in the field, following ethics approval.

Ethical rationale for including OVCs in research

I firmly believe that it's important for us to include orphans and other vulnerable children in our research. Otherwise, how else would we know how to conduct interventions that address their circumstances? We need to make sure that they are represented. (Participant 9)

Kids who are the most disenfranchised won't have the opportunity to participate in potentially helpful interventions, and interventions won't be able to be developed that are tailored to their unique needs. (Participant 2)

If there's a direct benefit to the child in participating, then I think they should have access to it. [C]hemotherapy trials, etc. I mean, if the kid needs treatment and didn't get something, I think it's not right to say they shouldn't get it because they're orphans. (Participant 10)

I think they are a vulnerable population for a lot of reasons, and I think, as you would say for any particularly vulnerable population it isn't probably ethical to conduct high risk research on a vulnerable population, if it could be just as well conducted on another population . (Participant 5)

I think what people were trying to get away from is the fact that you just use orphans because it's convenient. And that they're coerced in some way from doing things they wouldn't normally do.… You wouldn't want to make the assumption that just because it's easy to enroll the orphans that you should. (Participant 10)

This group faces, oftentimes, significantly poor outcomes in whatever you might be looking at—education or health—mental and physical health. So, I would argue for inclusion of this group. And, part of that is because I think they are vulnerable on a number of levels, and that excluding them from research would basically prevent us from trying to address these issues, and to support them in a way that is evidence-based. (Participant 8)

The issue for me would be: what's the level of benefit to the participant in research? And if the research offers the only option, or the potential of direct benefit and there's no other way to get it, then I think it's unethical to exclude orphans, just because they're orphans. Because then they don't have access to something that other kids would. (Participant 10)

If you had a child who had, maybe, a serious mental or physical ailment that was not the focus of the study, that the study itself could be harmful to the child, or the information from the child in that study would not really be useful because of the situation of the child, particularly on disability grounds. … we would never want to continue trying to recruit a child if there was any harm that could come to the child. (Participant 1)

I think my biggest worry is that people won't do this kind of research because they're fearful and they don't have the knowledge to be able to know what can and can't be done. … I think doing research [in my case] with homeless kids—you can count the number of people who do intervention research on one hand. That's a big problem! And I think it's because many people are fearful because they don't understand the regulations or know them, or they don't know what protections they have, and the protections for the kids. I think it's systemic. I think the IRB/REC almost doesn't want people to do this research, because it puts the university, at what they consider to be more risk. (Participant 2)

Who is an orphan? Challenges defining the population of vulnerable children

If a child loses their parents, they've still got parents in the form of uncles or the grandparents. Our notion of orphans, in social terms, doesn't really apply in many parts of Africa. (Participant 3)

My definition of orphan is different from a child that's fostered. [Orphaned means] either one or both parents are no longer alive. Any orphan could live with a surviving parent; and a non-orphan may not live with either surviving parent, [and be fostered]. So, fostering and orphanhood, at least in, let's say, a setting like South Africa, are very different things. (Participant 1)

In addition, for the researchers working in low-income settings the social and economic situation for most children was one of vulnerability and was attended by complex and fluid social support structures. Therefore, these conditions were not unique to orphans.

Who is a guardian and who is fit to be a guardian?

Most fosterage in this area is informal. So one of my challenges was to decide that I didn't need to use that legal definition of fosterage, or needing to have a legal caregiver appointed for a child for informed consent, because it doesn't make sense ethically in this context. That's not the way the system works. It's not the structure of foster care, here. The area where I work there is a huge amount of informal fostering, even of children whose parents are both alive. It's probably the most common scenario here for children, is that they are living with a relative and their parents are migrant laborers. So, it's very, very common for children not to be living with a legal guardian, or a parent even when their parents are alive and working and everything, so it definitely took a little bit of thinking and talking through with the ethics board, here. (Participant 5)

There wasn't an explicit process. I think for all children, regardless of whether they had a parent or guardian present to sign the consent form, these issues are taken into account. We didn't specifically delineate having different sorts of guardians. (Participant 9)

The gatekeepers like the head of the clinic or the head of the shelters I do think that they do a good job, for the most part, of, obviously, knowing the kids and having their best interests at heart. (Participant 12)

Asking a parent for permission … That's different than an orphanage director who's responsible for 500 kids, who may not have the same level of investment in those kids. So they might just say ‘Sure, it's fine with me.’ Then, the burden is on us to make sure we're not taking advantage of the situation. (Participant 6)

Assessing research risk for OVCs

I think it's a question of study aim. Clearly, I could imagine studies in which asking these kinds of questions about orphans, particularly, would provide us with this research that would be of benefit to orphans and vulnerable children, themselves. In which case I do think it's ok to enroll them. Especially because I could imagine that play behavior would be something that would potentially be affected by orphan status. That would be something that would deserve study, in the aim of intervention. (Participant 5)

Doing a study directly targeting orphans, or doing a study where you're just sampling from a general child population, you're going to have the same sort of challenges, how do you deal with the parents who aren't present, you know? (Participant 5)

Several investigators working in low-resource settings said they do not perceive significant differences between orphans and non-orphans in this socioeconomic context. In part it is difficult to classify orphans differently since so many children are living away from their birth parents. And in part all children and many adults in low-resource settings were viewed as equally vulnerable to the risk of exploitation or harms in research given such extreme social and economic needs and, at times, lack of adequate social support.

Limitations of assent and guardian consent

What happens in the case when the child doesn't have a clear legal guardian? [I]n the case of a lot of the children that we work with, maybe their guardian is a bit more informal, and maybe, for example, they've been placed with their grandmother, after their parent has died. And that hasn't been legally formalized, so, one ethical issue that we come across is who, as an adult, is allowed to give consent? And that, I think, is quite a grey area in working with this population. (Participant 8)

It's important to make sure that the inclusion procedures include, especially informed consent, have sufficient flexibility within them, to make sure that the needs of children who have been orphaned can be recognized. [S]ome of the children may well have had guardians who were able to answer for them and to indicate their consent. Other children, the individual to whom informed consent ought to be directed was not entirely clear. There may not have been an obvious parent or guardian immediately available. The issues around informed consent were very touchy and tricky. (Participant 9)

If they aren't an orphan, they at least nominally have someone, an adult person who we would hope would have some judgment in the young person's best interests at heart to help protect them from being exploited with research, and to help to have them understand. […] I always contract myself about [informed consent with homeless youth] because obviously, as researchers, we want to get the research done, and get funding and results, so, it's stepping back and realizing where that young person is, and making sure that we're not taking advantage of them. … I mean the reality of the street life is such that there's a lot of substance use. And there's also a lot of coexisting mental illness issues, problems with education, reading level … So, it's trying to figure out ways of assessing that, and whether they are at a place right then that they can understand, even, what they're consenting to. (Participant 12)

I feel like the kids who don't have a parent; they don't have the natural protections that kids who have parents or guardians do, and so, I think it's something that we have to take on. Being the extra protection for those kids. (Participant 2)

Benefits, ancillary care and compensation

The interviews were being done at school, after hours, so it was, ‘Well it's going to take up your time. We'll arrange to provide food.’ There was a discussion with the children, ‘We're happy to provide food, what would you like?’ And the kids said they all wanted Kentucky Fried … Now, it's a nice idea […] a form of compensation that's not really excessive. Except … it's a poor township, so most of them have never had this. Kentucky Fried's a real treat. […] There was a point at which other kids came around and saw that these kids were getting Kentucky Fried. There was almost going to be a riot. It was fairly tense. Other kids were wanting it, other teachers were wanting it, demanding it. They handled it by basically barricading themselves in a room and handing Kentucky Fried out the window to avoid being mobbed. […] Look, we made a basic error, I mean, I'm just glad the kids weren't hurt, that the caterer wasn't hurt. (Participant 3)

I work with homeless kids and these kids need housing. But my project can't provide housing. What we do is, we try to link up the kids to other housing programs in the city. They won't go to the runaway shelter because the runaway shelter has requirements that their parents be contacted, or child protection services. So the younger kids won't go there. So what was happening is that the kids would sleep on our research porch, outside in the summer. And the neighbors would complain, and they would say, ‘You've got homeless kids sleeping on your porch. You need to house them.’ (Participant 2)

I make sure that they're already tied into resources, and I feel like that's kind of an ethical obligation. So, that they're getting the help that I think that they need and that they're willing to accept. […]You know, for instance, if we are talking about some pretty deep depression, even if it's not active suicide ideations, of working with them, getting their consent first, but actually taking them, walking them to somebody who can help with that. (Participant 12)

Researchers reported resourceful ways of responding to children's basic needs, often at personal expense, but most were done without institutional or sponsor support. Researchers recognized the limits of sustainability in this approach but all wrestled with the emotional pull to respond. As one researcher said, ‘if not me, then who?’

Researchers in this study made a strong ethical case for the importance of designing research aimed at improving the lives of orphans and other especially vulnerable children. This idea that better evidence is needed to inform innovative social programs and targeted health interventions was important in thinking about the potential role for research as a tool for helping vulnerable populations of children. There was also a shared sense that in cases where directly beneficial medical interventions could only be obtained through research—as is often the case in low-resource settings with high childhood disease burden—it would be unjust to exclude OVCs by default. Rather, careful consideration should be made to find ways to ensure access to research with prospect of direct benefit. This echoes others who have cautioned against the unjust exclusion of vulnerable populations in research, especially children, pregnant women and pregnant adolescents. 29–31

At the same time researchers expressed concern about the risks facing these children in their daily lives and worried about introducing added harm or psychological stress in research. Several researchers raised concerns about adolescents' psychological capacity to participate meaningfully in consent given the common attendant problems of life on the street, such as substance abuse and high levels of stress. For this reason they were sometimes inclined to exclude younger OVCs from research not offering reasonable prospect of direct benefit. Even in studies with direct benefits, several were inclined to exclude a child who was distressed or had significant attendant sociobehavioral challenges, but the latter seemed to reflect a broader concern for any child who experiences added stress by participating in research. Others have raised concerns about the meaningfulness of direct consent by orphans who may agree to participate in research because they want to show respect to adult caretakers or researchers. 24 These concerns would seem to speak against recent calls for granting permission for older unaccompanied children and adolescents to directly consent for participation in research, at least without other means of improved support. 22 , 23 , 31 A middle way to avoid unjust exclusion while acknowledging a need to mitigate such concerns would be to use study advocates, peer networks or social workers to improve social support to safely enable direct research participation, as has been recommended in some international guidelines. 14 , 15 , 18

Our findings do raise questions about prioritizing the role of guardians in consent and ongoing support of vulnerable children enrolled in research. Results suggest substantial weight is being placed on the responsibility of guardians without reflecting the limitations and variations of that role. Researchers in our study reported that any adult available is providing consent, and most did not view evaluation of a guardian as practical. While researchers reported many very caring and attentive guardian caregivers, they also raised significant concerns about the real constraints on the head of a busy orphanage, or new foster parent, or temporary caregiver to know a child well and advocate in the way parents do in the clinical and research decision making contexts. In countries devastated by conflict, the HIV/AIDS pandemic or the Ebola crisis, centuries old social nets of kinship-based care for orphans have either unraveled through severe stress or evolved to include institutional support provided by churches and NGOs. 33 Because the largest population of OVCs are in low-income, high disease burden regions, the specific vulnerabilities of children in this setting are more complex and exist in a context with absent or limited child protection institutions. Others have called for a more flexible and creative approach to social support coupled with child-centered participatory methods of research that better recognize the complex social reality of children living without parents, acknowledging both their vulnerability and their agency. 22–25 , 34–36 In countries like Zimbabwe where traditional culture views children without parents as the responsibility of the community, we have seen that waiving strict legal guardianship as a condition of enrollment can make a significant difference in improving access for orphaned children to potential benefits of research. 36

In cases where adult caregivers were not consistently present during research or did not know the child well, researchers felt that much of the onus of protection fell to the research team. All reported difficult situations surrounding ancillary care duties—e.g. how to respond to basic needs for food and shelter, school supplies, other health needs, or reports of neglect or abuse in a foster home. Researchers reported creative ways of responding to children's needs, often at personal expense, but most were ad hoc and done without institutional support or an eye to what is sustainable in context. 26 , 37 , 38 While the need to anticipate and plan for meeting ancillary care obligations and reasonable compensation have become more routine in international research studies in low resource settings these researchers shared many stories about the practical challenges in the field of managing such decisions. 38–41 All reported a sense of personal obligation to respond to vulnerable children's needs and spent considerable time connecting children or teens to resources and care outside the research context. At the same time, many shared examples of well meaning efforts gone awry, with unintended consequences associated with offering food or other benefits in a low-resource context. 26 This can be a great deal to expect of researchers, particularly research staff and trainees, and raises genuine concerns about conflicts of interest. Yet the strong sense of personal obligation and involvement resonates with calls to consider the more relational aspects of ethical obligations among researchers, participants and communities. 42–44

These researchers also confirmed the persistent challenges of determining fair research benefits and avoiding unintended harms or misunderstanding within the broader community. 24 , 25 , 38 For this group, the needs of the dependent child clearly took precedence and concerns about sustainability were secondary to responding to immediate needs. As mentioned, researchers expressed a strong sense of personal responsibility to respond to the children's basic needs and were aware of potential conflicts of interest but did not discuss clear solutions to the question of balancing these considerations. Nor did they speak to the broader moral expectations of the community for researchers to aid and ‘take in’ orphans, as others have reported. 24 , 25 This finding is consistent with other studies involving fieldworkers' sense of personal obligation and lack of systematic processes for managing the often overwhelming needs of participants. 24–26 , 37 , 38

The insights offered by researchers working with OVCs in low-resource settings confirmed that vulnerability is varied, highly contextual, and does not necessarily undermine autonomy and other abilities to engage meaningfully in research decisions, although this group clearly thought additional support was needed during research participation. These researchers confirmed the need for additional empirical work to characterize specific vulnerabilities of unaccompanied children as well as clarify their role as social actors and identify creative strategies for improving social support. 24 , 34 , 43 , 45

The results also highlight the limitations of research regulations based on vague definitions of special vulnerable populations, and yet largely inflexible guidelines for procedures, such as consent/assent. In the case of wards of the state or OVCs researchers described situations where those categories clearly do not fit local social or legal contexts. Researchers described current international definitions of wards, OVCs and guardians as ‘legalistic’, failing to fit more complex definitions of family, parenting, and fluid networks of social support, including peer support. Although this is not merely a disconnect between international research regulation and country-level regulation. As others have argued, the laws on human subjects protection pertaining to children within countries like Thailand, South Africa and Zimbabwe are often in tension with the social reality in which unaccompanied children and adolescents live. 22 , 23 , 31 , 36 Because research ethics guidance often relies on strict legal definitions of unaccompanied children, a wide range of vulnerable children who appear with an adult declared as the child's caregiver might mean that vulnerable children are being recruited into research without adequate protection and advocacy from a responsible adult. Similarly, adolescents who are independent, self-supporting and making clinical decisions for themselves but have no legal caregiver, might be unnecessarily excluded from research designed to exclude ‘OVCs’. 31 , 36 , 46

This was an in-depth study with a specific and small population of investigators conducting research under US Federal regulations permitting research with ‘wards of the state’, orphans and other vulnerable children. This creates obvious limitations regarding the ability to generalize to ethical issues facing the majority of researchers working with vulnerable children. However, as described above, our findings largely echo those of the few qualitative studies conducted at the country level in low-resource settings. 22–26 More work is needed to identify practical solutions and systematic approaches to the contextual challenges within communities, as they continue to be largely handled on an ad hoc basis and often at personal cost to individual researchers. The most important moral question is how to think of researchers' obligations, not merely to aid but to engage with vulnerable young people when the boundaries between daily survival and research are blurred and the need for trusting adult relationships is so pressing.

A range of caregivers bear responsibility to protect OVC's interests in research in place of parents but are often not prepared to do so. This places greater burden on researchers to assess risks and respond to children's needs. Our findings suggest that we improve support and possibly rethink the roles of guardians, researchers, and older children in research participation and protection to ensure that children living without parents have fair access to potentially beneficial research and that research aimed at addressing their health and social needs is encouraged.

Authors' contributions: MK conceived and designed the study, developed draft interview instruments with input from DD, TB and BW, contributed to creation of coding scheme, conducted normative analysis on the findings, co-wrote the first draft of the paper with TB and wrote the second full draft of the paper. TB helped revise interview instruments, conducted interviews, conducted first phase of coding and qualitative analysis, participated in the team discussion of data, and with MK wrote the first paper draft. BW contributed to the study design, team discussion of initial qualitative analysis and final draft of paper. LL, BR and SMH contributed to the team discussion of initial qualitative analysis and final draft of paper. DD contributed to study design, instrument design, team analysis and final draft of paper. All authors read and approved the final version of the paper. MK is the guarantor of the paper.

Acknowledgements: We would like to thank the study participants for taking valuable time to offer thoughtful reflections on these issues. MK would like to acknowledge the support offered by the Ethox Centre's Caroline Miles Scholarship at the University of Oxford. We are also grateful to Professor Anna Mastroianni at the University of Washington School of Law who provided helpful legal expertise and review of existing international guidance on research involving OVCs, which we have relied on in the background preparation of this study.

Funding: This study was supported by a project grant from The Greenwall Foundation (PI, MK) and with additional staff support from the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute.

Competing interests: None declared.

Ethical approval: Ethical approval was obtained by the Seattle Children's Research Institute's Institutional Review Board. Seattle, Washington, United States.

UNAIDS, UNICEF, USAID . Children on the brink: A joint report of new orphan estimates and a framework for action, 2004 . New York : United Nations Children's Fund ; 2006 .

Google Scholar

UNICEF . State of the World's Children Report . Geneva : United Nations ; 2015 .

US Department of Housing and Urban Development . 2014 Annual Homelessness Assessment Report [AHAR] . Washington, DC : US Department of Housing and Urban Development ; 2015 .

American Academy of Pediatrics . Developmental issues for young children in foster care . Pediatrics 2000 ; 106 : 1145 – 50 .

Frank DA , Klass PE , Earls F , Eisenberg L . Infants and young children in orphanages . Pediatrics 1996 ; 97 : 569 – 78 .

DiGiuseppe DL , Christakis DA . Continuity of care for children in foster care . Pediatrics 2003 ; 111 : e208 – 13 .

DuPlessis HM , Cora-Bramble D . Providing care for immigrant, homeless, and migrant children . Pediatrics 2005 ; 115 : 1095 – 100 .

Ensign J , Panke A . Barriers and bridges to care: voices of homeless female adolescent youth in Seattle, Washington, USA . J Adv Nurs 2002 ; 37 : 166 – 72 .

Meade MA , Slesnick N . Ethical considerations for research and treatment with runaway and homeless adolescents . J Psychol 2002 ; 136 : 449 – 63 .

Lederer SE . Subjected to Science: human experimentation in America before the Second World War . Baltimore : Johns Hopkins University Press ; 1995 .

Blustein J , Levine C , Dubler N (eds). The adolescent alone: decision making in health care in the United States . Cambridge : Cambridge University Press ; 1999 .

Kottow MH . The vulnerable and the susceptible . Bioethics 2003 ; 17 : 460 – 71 .

Office for Human Research Protections (OHRP) . International compilation of human research standards . Washington, DC : US Department of Health and Human Services ; 2016 . http://www.hhs.gov/ohrp/international/intlcompilation/internationalcomp2016.doc [accessed 14 April 2016].

US Code of Federal Regulations . Protection of Human Subjects (Subpart D 45 CFR 46.409) . Washington, DC : US Department of Health and Human Services ; 2009 . http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html [accessed 14 April 2016].

Population Council . Ethical approaches to gathering information from children and adolescents in international settings: guidelines and resources . Washington DC : Population Council ; 2005 .

Council for International Organizations of Medical Sciences (CIOMS) . International ethical guidelines for biomedical research involving human subjects . Geneva : World Health Organization ; 2002 .

World Medical Association . Declaration of Helsinki, Edinburgh 2013 . Edinburgh : Fifty second WMA General Assembly ; 2013 . http://www.wma.net/en/30publications/10policies/b3/index.html . [accessed 14 April 2016] .

Nuffield Council on Bioethics . Children and clinical research: ethical issues . London : Nuffield Council on Bioethics ; 2015 .

Zion D , Gillam L , Loff B . The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations . Nat Med 2000 ; 6 : 615 – 7 .

Diekema DS . Conducting ethical research in pediatrics: a brief historical overview and review of pediatric regulations . J Pediatr 2006 ; 149 ( 1 Suppl ): S3 – 11 .

Ross LR . Children in medical research . Oxford : Oxford University Press ; 2006 .

Cheah PY , Parker M . Consent and assent in paediatric research in low-income settings . BMC Med Ethics 2014 ; 15 : 1 – 10 .

Cheah PY , Parker M . Research consent from young people in resource-poor settings . Arch Dis Child 2015 ; 100 : 438 – 40 .

Nyambedha EO . Ethical dilemmas of social science research on AIDS and orphanhood in western Kenya . Soc Sci Med 2008 ; 67 : 771 – 9 .

Vakaoti P . Researching street-frequenting young people in Suva: ethical considerations and their impacts . Children's Geographies 2009 ; 7 : 435 – 50 .

Kingori P . Experiencing everyday ethics in context: frontline data collectors perspectives and practices of bioethics . Soc Science Med 2013 ; 98 : 361 – 70 .

Attride-Stirling J . Thematic networks: an analytic tool for qualitative research . Qual Res 2001 ; 1 : 385 – 405 .

Hsieh HF , Shannon SE . Three approaches to qualitative content analysis . Qual Health Res 2005 ; 15 : 1277 – 88 .

Millum J , Emmanuel EJ . The ethics of international research with abandoned children . Science 2007 ; 318 : 1874 – 5 .

Lyerly AD , Little MO , Faden R . The second wave: toward responsible inclusion of pregnant women in research . Int J Fem Bioethics 2008 ; 1 : 5 – 22 .

Singh JA , Karim SA , Karim QA et al.  . Enrolling adolescents in research on HIV and other sensitive issues: lessons from South Africa . PLoS Med 2006 ; 3 : e180 .

Schenk KD , Michaelis A , Sapiano TN et al.  . Improving the lives of vulnerable children: implications of horizons research among orphans and other children affected by AIDS . Pub Health Rep 2010 ; 125 : 325 .

Nyambedha EO . Change and continuity in kin-based support systems for widows and orphans among the Luo in western Kenya . African Soc Rev 2005 ; 8 : 139 – 53 .

Morrow V . Invisible children? Toward a reconceptualization of childhood dependency and responsibility . In Jenks C. , ed. Childhood: critical concepts in sociology . London : Rutledge ; 2005 .

Google Preview

Young L , Barrett H . Ethics and participation: reflections on research with street children . Ethics, Place and the Environment 2001 ; 4 : 130 – 4 .

Bwakura-Dangarembizi M , Musesengwa R , Nathoo KJ et al.  . Ethical and legal constraints to children's participation in research in Zimbabwe: experiences from the multicenter pediatric HIV ARROW trial . BMC Med Ethics 2012 ; 13 : 1 – 5 .

Kamuya DM , Theobald SJT , Munywoki P et al.  . Evolving friendships and shifting ethical dilemmas: Fieldworkers' experiences in a short term community based intensive household study . Dev World Bioethics. 2013 ; 13 : 1 – 9 .

Molyneux S , Mulupi S , Mbaabu L , Marsh V . Benefits and payments for research participants: experiences and views from a research centre on the Kenyan coast . BMC Med Ethics 2012 ; 13 : 1 – 15 .

Nuffield Council on Bioethics . The ethics of research related to health care in developing countries . London : Nuffield Council on Bioethics ; 2002 .

Pratt B , Zion D , Lwin KM et al.  . Ancillary care: from theory to practice in international clinical research . Pub Health Ethics 2013 ; 6 : 154 – 69 .

Merritt MW , Taylor HA , Mullany LC . Ancillary Care in Community-Based Public Health Intervention Research . Am J Pub Health. 2010 ; 100 : 211 – 6 .

Fisher CB . A relational perspective on ethics-in-science decision-making for research with vulnerable populations . IRB 1997 ; 19 : 1 – 4 .

Lange MM , Rogers W , Dodds S . Vulnerability in research ethics: a way forward . Bioethics 2013 ; 27 : 333 – 40 .

Rogers W , MacKenzie C , Dodds S . Why bioethics needs a concept of vulnerability . Int J Fem App Bioethics 2012 ; 5 : 11 – 38 .

Luna F . Elucidating the Concept of Vulnerability: Layers not Labels . International Journal of Feminist Approaches to Bioethics 2009 ; 2 : 121 – 39 .

Donald D , Clacherty G . Developmental vulnerabilities and strengths of children living in child-headed households: a comparison with children in adult-headed households in equivalent impoverished communities . African J AIDS Res 2005 ; 4 : 21 – 8 .

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Peer-reviewed

Research Article

Factors affecting the psychosocial well-being of orphan and separated children in five low- and middle-income countries: Which is more important, quality of care or care setting?

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Visualization, Writing – original draft

* E-mail: [email protected]

Affiliation Center for Health Policy & Inequalities Research, Duke Global Health Institute, Duke University, Durham, North Carolina, United States of America

Roles Supervision, Writing – review & editing

Affiliation Department of Youth, Family & Community Studies, Clemson University, Clemson, South Carolina, United States of America

Roles Methodology, Visualization, Writing – review & editing

Roles Methodology, Supervision, Writing – review & editing

Roles Supervision

Affiliation Ace Africa Kenya, Bungoma, Kenya

Affiliation Development for Cambodian Children (DCC), Battambang, Cambodia

Affiliation Tanzania Women Research Foundation (TAWREF), Moshi, Tanzania

Affiliation Stand for Vulnerable Organization (SVO), Addis Ababa, Ethiopia

Affiliation Sahara Centre for Residential Care & Rehabilitation, New Delhi, India

Roles Funding acquisition, Supervision, Writing – review & editing

• Hy V. Huynh, 
• Susan P. Limber, 
• Christine L. Gray, 
• Martie P. Thompson, 
• Augustine I. Wasonga, 
• Vanroth Vann, 
• Dafrosa Itemba, 
• Misganaw Eticha, 
• Ira Madan, 
• Kathryn Whetten

• Published: June 13, 2019
• https://doi.org/10.1371/journal.pone.0218100
• Reader Comments

As millions of children continue to live without parental care in under-resourced societies in low- and middle-income countries (LMICs), it is important for policymakers and practitioners to understand the specific characteristics within different care settings and the extent to which they are associated with outcomes of orphan and separated children (OSC). This study was designed to (1) examine if the psychosocial well-being of OSC in under-resourced societies in LMICs is more dependent on the availability of certain components of quality of care rather than the care setting itself (i.e. the residential care-based or community family-based setting), and (2) identify the relative significance of certain components of quality of care that are associated with a child’s psychosocial well-being across different OSC care settings. This study drew from 36-month follow-up data from the Positive Outcomes for Orphans (POFO) Study and used a sample population of 2,013 (923 institution- and 1,090 community-based) OSC among six diverse study sites across five LMICs: Cambodia, India (Hyderabad and Nagaland), Kenya, Tanzania, and Ethiopia. Analyses showed that all four components of quality of care significantly predicted child psychosocial well-being. Child psychosocial well-being across “high” and “low” levels of quality of care showed negligible differences between residential- and community-based care settings, suggesting the important factor in child well-being is quality of care rather than setting of care. Practical and policy implications and future research are discussed.

Citation: Huynh HV, Limber SP, Gray CL, Thompson MP, Wasonga AI, Vann V, et al. (2019) Factors affecting the psychosocial well-being of orphan and separated children in five low- and middle-income countries: Which is more important, quality of care or care setting? PLoS ONE 14(6): e0218100. https://doi.org/10.1371/journal.pone.0218100

Editor: Kannan Navaneetham, University of Botswana, BOTSWANA

Received: November 14, 2018; Accepted: May 25, 2019; Published: June 13, 2019

Copyright: © 2019 Huynh et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Data cannot be shared publicly because of the Duke University Human Subjects Research IRB. Data are available for researchers who can meet the criteria for access to confidential data (requests may be sent to Kimberly Walker, Associate Director of the Center of Health Policy & Inequalities Research at Duke University, [email protected] ).

Funding: Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R01HD046345. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Global, national, and local leaders are struggling to find care solutions for the estimated 140,000,000 children worldwide who have lost one or both parents and millions more who have been separated from both parents (hereafter defined as orphan and separated children [OSC]).[ 1 ] High mortality among young adults from conditions such as malaria, tuberculosis, HIV/AIDS, pregnancy complications, accidents and natural disasters are responsible for the increasing number of orphans in low- and middle-income countries (LMICs).[ 2 ] Millions of non-orphaned children are separated from their biological parents either permanently or semi-permanently and are in need of supportive living environments. This separation often occurs because biological parents are: (a) unable to provide food, shelter, and safety; (b) forced to leave their children to seek employment elsewhere; or (c) physically or mentally unable to care for their children.[ 2 ]

The majority of OSC live in sub-Saharan Africa and Southern and Southeastern Asia, with Southern and Southeastern Asia having the largest number of orphans (61 million) while estimates for sub-Saharan Africa indicate that over 52 million children have been orphaned.[ 1 ] In other words, the countries with the highest rates of OSC are also among the economically poorest and most under-resourced.[ 2 ] Additionally, research suggests there are numerous negative outcomes associated with being an OSC in an under-resourced society, including traumatic grief, compromised cognitive and emotional development, less access to education, and a greater probability of being exploited for child labor.[ 3 – 10 ] Poverty extends into all areas of children’s lives and prevents children from having the security and structures required to grow, thrive, and develop.[ 9 , 11 – 14 ] OSC are in need of living environments that protect and promote their well-being.

Given the high rates of OSC and the extensive evidence on the negative outcomes associated with being an OSC in an under-resourced society, local and international communities have responded to this challenge by putting in place various alternative care options, including residential care (e.g. residential care centers [RCCs], group homes, “orphanages), and community-based family care (e.g. extended family member’s homes, adoption, foster care) in support of the affected children and their households. For children without adequate parental care, the international consensus is that there is a public responsibility to ensure alternative care is provided.[ 15 ]

As previously described in detail[ 16 , 17 ], the extent to which alternative residential care settings negatively affect children’s physical, cognitive, and psychosocial well-being has become a central debate for international aid policy affecting low- and middle-income countries (LMICs) with large numbers of OSC. Several oft-cited studies of infant children who lived in socially and emotionally deprived institutions in Europe[ 18 – 24 ] have concluded that institutional care is damaging to the development of young children relative to community-based foster care. Indeed, some studies demonstrated powerful negative effects of deprivation on infant development, and positive development when the infants were moved to live with well-trained and paid foster parents.[ 18 , 24 ] These studies of infants in a very specific and negative caregiving environment have been generalized to a belief that all residential care settings across the world must have the same poor caregiving characteristics: high child-to-caregiver ratios, shift work, low compensation for caregivers, regimented and non-individualized care, and a lack of psychological investment in the children.[ 25 ]

Accordingly, there is widespread belief and a plausible logic to support the premise that adequate care for OSC can be most effectively provided in community-based “family environments”; that is, settings that appear on their face to be similar to biological families (primary kin), and that may be especially well suited to meet the psychological needs associated with child development. Currently, global development guidelines and policies[ 26 – 29 ] recommend family-based care settings be considered first and “institutional <residential> care should only be used as a last resort”.[ 27 ]

However, studies that were designed to compare residential care centers to community-based family environments, and which include data from a broader array of cultural and situational contexts find more nuanced results. In several of these studies, children in residential care centers were found to fare as well as or better than those in community-based settings.[ 30 – 36 ] In addition, Whetten et al.[ 37 ] found that children in residential care centers across five LMICs (Cambodia, India, Kenya, Tanzania, and Ethiopia) fared better than those in community settings on several outcomes, including physical health, behavioral and emotional health, intellectual functioning, and memory. They also reported great variability between individuals within care settings (larger than variability between sites or variability between care settings within a site), and after adjusting for sites, age, and gender, discovered that residential care vs. community-based care settings explained only 0.3–7% of the variability in child outcomes.[ 37 ]

Certainly, when searching for the best alternative care option for orphan or separated children, most would agree that opportunities within the extended family or in other community- based settings should be seriously considered. However, as previously discussed[ 38 ], there is an important distinction between examining care options for OSC based on a priority scale, and carefully evaluating all options equally to determine the best fit for a child and their current needs. In practice, there has been movement from residential care centers to community family-based care without careful consideration of whether community family-based care settings better meet the needs of all children. The wide variety of reasons for which children find themselves living outside their family environment and in alternative residential care, as well as the numerous models and structures of alternative residential care available, motivates questions about how quality of care is defined and what features of care relate to child well-being, especially in under-resourced parts of the world.

Consequently, it is reasonable to believe that in under-resourced societies in LMICs with high and increasing rates of OSC, the principal functions of families for children may be more focused on the most basic needs.[ 39 ] Meeting these needs help children move toward more complex needs and develop positive child outcomes such as psychosocial well-being. Thus, the development of positive child outcomes (such as psychosocial well-being) may not be heavily dependent on membership in a community-based setting like a Western-style nuclear family. It may instead be dependent primarily on the availability of certain components of quality of care rather than the living environment itself where OSC receive care.

This study was designed to: (1) examine if the psychosocial well-being of OSC in under-resourced societies in LMICs is more dependent on the availability of certain components of quality of care rather than the care setting itself (i.e. residential care-based or community family-based setting), and (2) identify the relative importance of certain components of quality of care that are associated with a child’s psychosocial well-being across different OSC care settings.

While a small body of research suggests there may be certain components of quality of care that are linked to positive child outcomes[ 25 , 40 , 41 ], the current body of applicable research is limited in both quantity and scope, with no research that explores the relationship between components of quality of care, such as food security, quality of shelter, quality of caregiving, and access to health care services and child psychosocial well-being by different OSC care settings. Currently, these gaps in knowledge diminish our ability to understand the specific needs and effectiveness of current OSC care settings and intervention programs.

Materials and methods

Study description.

Positive Outcomes for Orphans (POFO) is an ongoing longitudinal study following a cohort of children who were age 6 to 12 at baseline, living in residential care or family-based care settings in six sites in five low- and middle-income countries: Battambang District, Cambodia; Nagaland and Hyderabad, India; Bungoma District, Kenya; Kilimanjaro Region, Tanzania; and Addis Ababa, Ethiopia. Children were enrolled between 2006 and 2008 and followed biannually. Using the 36-month follow-up data, a total of 2,013 (923 residential care-based and 1,090 community-based) OSC study participants from all six sites were available for analysis.

Study sample

The POFO study employed a two-stage random sampling methodology to identify a representative sample of 1,357 OSC living in residential care settings and 1,480 OSC living in community-based settings. To sample children in community-based settings, geographic or administrative boundaries were used to define sampling areas (clusters) within each site, and 50 clusters in each site were randomly selected. From these clusters, up to five eligible children ages 6–12 years were randomly selected. Eligible children were orphans, defined as children with one or both parents deceased, and separated children, defined as children who had been separated from their parents with no expectation of return. To sample children from residential care settings, defined as having at least five children from at least two different biological families not related to the caregivers and not in a family home, up to 20 centers per site were randomly selected from lists of all residential care centers in the region. Residential care centers provided lists of all children aged 6 to 12, and were approached sequentially until 250 children were enrolled, with up to 20 children randomly selected from each center. The full sampling strategy and characteristics of the sample have been reported elsewhere.[ 16 ]

Data collection

Research ethics approvals for data collected in this study were provided by the Duke University Health System IRB as well as the following ethics review committees in the participating countries: the National Ethics Committee for Health Research (NECHR) in Cambodia; the Sharan IRB in India; the Indian Council of Medical Research (ICMR); the Kenya Medical Research Institute (KEMRI); the Kilimanjaro Christian Medical College Research Ethics and Review Committee (CRERC) in Tanzania; the National Institute for Medical Research (NIMR) in Tanzania; the Save Lives Ethiopia IRB in Ethiopia; the Stand for Vulnerable Organization IRB in Ethiopia; and the National Health Research Ethics Review Committee (NERC) in Ethiopia. Written and verbal consent was obtained from all children’s primary caregivers and assent was obtained from each participating child. More details regarding the interviewer training and data collection methods can be found in Whetten et al.’s previous study.[ 16 ]

Research measures

Assessment of components of quality of care: the child status index (csi)..

The Child Status Index (CSI) was developed as an easy-to-use tool to assess children’s current needs, monitor improvements in specific dimensions of child well-being, and identify areas of concern that can be served by program interventions.[ 42 ] The development of the CSI tool began in Kenya and Tanzania and involved a community participatory process with key stakeholders to derive the different domains and factors. After implementing feedback from several other countries, the tool was successfully field tested in Kenya and Tanzania for inter-rater reliability and construct validity.[ 42 ]

The tool is based on several child-centered and broader environmental factors and was organized under six domains: Food and Nutrition; Shelter and Care; Protection; Health; Psychosocial; and Education and Skills Training. For each domain, there are two different factors that represent potential areas of concern, and which may be modifiable with additional resources. Each of the 12 factors was rated on four levels of well-being, where higher scores indicated better child and care setting status in that area (i.e. 1 = very high risk; 2 = moderately high risk; 3 = moderately low risk; 4 = no risk).

Components of quality of care (CSI factors).

Among the twelve different factors of the CSI, the following four factors were used for analysis based on their relevance to the “components of quality of care” construct, the expert recommendation of the CSI creator, as well as empirical evidence that suggests their potential effects on OSC care settings.

CSI factor 1: Food security.

The goal of this factor was for the child to have sufficient and nutritious food at all times of the year to grow well and to have an active and healthy life. “Food Security” was defined as: “the ability of the household or institution to obtain and provide enough food for the child. This food should be obtained through socially acceptable ways, without resorting to emergency food supplies, scavenging, begging, stealing, or other coping strategies”.[ 42 ]

CSI factor 3: Shelter.

The goal of this factor was for the child to have a stable shelter that is adequate, dry, and safe. “Shelter” describes “the physical place or structure of the home or institution where the child lives and the extent to which the structure provides security, comfort and protection from weather. Stability is defined in terms of living in the same place for at least the past six months”.[ 42 ]

CSI factor 4: Caregiving.

The goal of this factor was for the child to have at least one adult (age 18 or over) who provides consistent care, attention, and support. Caregiving was “seen as good when there is an identified adult (parent or guardian) who provides the child with a stable, nurturing, and emotionally secure environment. The relationship between the child and the caregiver should provide physical and psychological security for the child. This factor captured how committed the caregiver was to the child and to his/her involvement with the child”.[ 42 ]

CSI factor 8: Health care services.

The goal of this factor was for the child to have access to health care services, including preventive care and medical treatment when ill. Adequate “health care services” was defined as “a child’s access to basic health care services that were age-appropriate, including immunizations (for children under five), bed nets, health education (e.g., HIV prevention for youth), other preventive measures, and appropriate medical care and medicines when sick”.[ 42 ]

Child psychosocial well-being.

The Strengths and Difficulties Questionnaire (SDQ) [ 43 ] self-report was administered to children aged 10 and older. This brief behavioral screening tool (applicable for children 3–16 years old) was used to assess behavioral and emotional difficulties.

The four difficulties subscales of the SDQ (emotional symptoms, conduct problems, hyperactivity/inattention; peer relationship) can be summed to create a total difficulties score. There were 5 items in each subscale, and each item was scored from 0–2.

The SDQ was selected because of the dimensions of behavior assessed, its brevity, and its frequent use in studies of children in international contexts.[ 44 – 46 ] Although the SDQ has no published data regarding its psychometric properties or standardization in the five countries of this study, its validity is supported by translation and use in over 80 languages and the attention with which translations were conducted with native language speakers in each of the study sites. The current study used the Total Difficulties scale (20 items; α = .78) from the child self-report version [ 43 ] as a measure of psychosocial difficulties, with higher scores signifying more behavioral and emotional difficulties (ranging from 0–40).

Using data from the 36-month follow-up of the POFO study, a series of hierarchical linear regression analyses were used to test the main effects of the components of quality of care on child psychosocial well-being, while controlling for demographic factors. Age, gender, and orphan status (either “single” or “double” orphan or “separated”) were entered as the independent variables in the first model (Step 1) to control for available demographic factors. In the second model (Step 2), each of the variables of interest (care setting and each of the components of quality of care) was added separately as an independent variable to the analysis. R 2 was used to assess explained variance as a way of understanding important predictors of SDQ.

Next, each of the CSI variables measuring quality of care were dichotomized to “high” and “low” categories, where CSI values of 4 were labeled “high” and CSI values of 1–3 were labeled “low.” Mean SDQ Total Difficulties scores were computed for both “high” and “low” CSI values for each care setting type (residential care and community-based settings). This process was done with each of the four CSI factors.

Table 1 describes the demographic characteristics of the 2,013 orphan and separated children (923 residential care-based and 1,090 community-based) included in the 36-month follow-up of the POFO study ( Table 1 ). The mean age of the sample was 9.19 years old and there was a higher proportion of males (n = 1120, 55.6%) than females (n = 893, 44.4%). Of the four categories of orphans, the greatest number of children were paternal orphans (n = 920, 45.7%), followed by double orphans (n = 549, 27.3%), separated or abandoned children with no dead parent (n = 288, 14.3%), and finally, maternal orphans (n = 256, 12.7%). Table 1 also displays the sample sizes and means for key demographic factors across OSC care settings.

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https://doi.org/10.1371/journal.pone.0218100.t001

Table 2 shows the results of each regression model that tested the main effect of the components on quality of care on child psychosocial well-being, while controlling demographic factors (“β” reflects the beta coefficient on the variable of interest, “SE” is the Standard Error on the coefficient of interest, and “Change in R 2” reflects the change in explained variance when the main exposure of interest (e.g. food security) is added to the model with all the other control variables). Findings suggested that greater levels of components of quality of care, including food security, quality of shelter, quality of caregiving, and access to health care services, significantly predicted better psychosocial well-being after controlling for demographic factors. Compared to the 0% variance in psychosocial well-being explained by care setting in this model, food security explained 13.4%, quality of shelter explained 10%, quality of caregiving explained 8.9%, and access to health care services explained 7.3% of the variance in psychosocial well-being. When we controlled for orphan status, age, and gender, we again found that components of quality of care predicted SDQ Total Difficulties better than care setting.

https://doi.org/10.1371/journal.pone.0218100.t002

After adjusting for demographic factors, mean SDQ Total Difficulties scores across “high” and “low” quality of care show differences between care settings to be minimal ( Fig 1 ).

https://doi.org/10.1371/journal.pone.0218100.g001

When levels of food security, quality of shelter, and quality of caregiving were “low” and “high”, there were no meaningful differences in SDQ total difficulties across care settings. When access to health care services was low, OSC in residential care-based settings had slightly higher SDQ total difficulties scores than OSC in community-based settings. However, when access to health care services was high, OSC in residential care-based settings had slightly lower SDQ total difficulties scores and therefore better psychosocial well-being than OSC in community-based settings.

Generally, findings suggest that when there are higher and lower levels of food security, quality of shelter, quality of caregiving, and access to health care services, the care setting was unrelated to psychosocial well-being. The mean SDQ total difficulties scores across “high” and “low” quality of care show differences between care settings to be minimal, and therefore are considered null results.

Findings from this study underscore the role of key components of quality care on child psychosocial well-being. Importantly, child psychosocial well-being did not vary by residential vs. family-based care within levels of high- and low-quality care. This study supported the hypothesis that, specifically in under-resourced societies in LMICs, psychosocial well-being for OSC may heavily depend on the quality of care provided within a setting rather than the care setting itself. Findings suggested that higher levels of all four components of quality of care (food security, quality of shelter, quality of caregiving, and access to health care services) significantly predicted more positive psychosocial well-being. Compared to the 0% variance explained by care setting in this current model, food security explained 13.4% of the variance in psychosocial well-being, while quality of shelter explained 10%, quality of caregiving explained 8.9%, and access to health care services explained 7.3%. Moreover, mean SDQ total difficulties scores across “high” and “low” levels of quality of care showed differences between care settings to be minimal, and are therefore considered null results.

It is reasonable to hypothesize that in LMICs with high and increasing rates of OSC, the principal functions of families for children may be more focused on their most basic and essential needs. Meeting these basic, survival needs help children move toward more complex needs and develop positive child outcomes such as better psychosocial well-being. Moreover, the delivery of such basic needs may not be heavily dependent on membership in a community-based setting like a Western-style nuclear family. It may instead be dependent primarily on the availability of certain components of quality of care rather than the structure or nature of the living environment where OSC receive care.

Thus, these findings cast doubt on conclusions from past studies indicating that residential care (institution-based) settings are systematically associated with poor child outcomes such as psychosocial well-being.[ 18 – 24 ] Instead, this study supports studies from a broad array of cultural and situational contexts suggesting that children in residential care centers may fare as well as or better than those in community-based settings.[ 30 – 36 ] Moreover, findings from this study suggest that in this study’s population across five LMICs, the psychosocial well-being of OSC in residential care settings (as measured by the SDQ) is no different from that of their community-based counterparts, and it is the availability of certain components of quality of care within the settings that make a difference. These findings should not be taken to mean that residential care settings are the better care setting for OSC, but rather that community-based care settings may perhaps not be all that different when it comes to predicting child psychosocial well-being. Given this, it is crucial that stakeholders create policies and practices that effectively support the improvement of quality of care across all OSC care settings.

This study has many important strengths, including the inclusion of six culturally diverse sites from LMICs, the rigorous sampling methodology that yielded statistically representative samples of residential care- and community-based OSC from each site, the longitudinal study design, and the high retention rate.[ 16 ] Several limitations should also be noted. Although the study included diverse LMICs, there is no representation from South America or Eastern Europe, where much of the earlier research on residential care originated. Recognizing that contexts are not necessarily interchangeable, continued study should focus on inclusion of other cultural contexts not represented in this study. Another limitation of this analysis involves the range of variables examined. Research suggests that there are other possible factors and characteristics that are significantly associated with OSC psychosocial well-being that were not included in this analysis, such as prevalence and incidence of trauma[ 47 ], school attendance[ 48 , 49 ], experience of HIV/AIDS stigma[ 50 ], socioeconomic status[ 51 ], caregiver health[ 52 ], or socio-cultural settings. Accordingly, it is possible that components of quality of care may act in tandem with other factors which influence psychosocial well-being, and further research is needed to tease out these relationships.

Although several limitations were identified, this analysis was innovative in its design. No previous studies have used a study sample of OSC across both residential- and community-based care settings to examine the extent to which certain components of quality of care predict child psychosocial well-being and how that varies across care setting. Findings suggest the potential of tools, such as the Child Status Index (CSI), to monitor and evaluate the quality of care within all care settings. Additionally, these findings offer a better understanding of where to intervene to improve orphan psychosocial well-being and suggest a focus on certain components of quality of care, such as food security, quality of shelter, quality of caregiving, and access to health care services. However, to truly understand how to improve these components of quality of care, more research is needed to identify and measure aspects of care that are specifically associated with high quality care and good child outcomes. Research to determine what high quality care and good child outcomes look like for specific demographics and socioeconomic and cultural contexts could elucidate intervention points that stakeholders need to effectively support the well-being of orphaned and separated children. Such research is essential as millions of children continue to live without parental care across both residential- and community-based care settings in under-resourced societies.

Acknowledgments

Gary Melton, University of Colorado, Denver, CO, USA;

Mark Small, Clemson University, Clemson, SC, USA;

Amy Hobbie, Andrew Weinhold, and Charles Belden, Duke University, Durham, NC, USA;

Chris Bernard Agala, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA;

Mao Lang, Homeland (Meatho Phum Ko’mah), Battambang, Cambodia;

Dean Lewis, Venkata Gopala Krishna Kaza, Sahara Centre for Residential Care & Rehabilitation, New Delhi, India;

Cyrilla Amanya, Ace Africa Kenya, Bungoma, Kenya;

Kilimanjaro Women Against AIDS (KIWAKKUKI), Moshi, Tanzania;

Stephen Sikumbili, Tanzania Women Research Foundation, Moshi, Tanzania;

SaveLives Ethiopia, Addis Ababa, Ethiopia;

Stand for Vulnerable Organization, Addis Ababa, Ethiopia.

Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R01HD046345. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

• 1. UNICEF. Press Centre: Orphans [Internet]. 2017 Jun. https://www.unicef.org/media/media_45279.html
• View Article
• PubMed/NCBI
• Google Scholar
• 3. WHO, The World Health Report 2007—A safer future: global public health security in the 21st century. 2007, Geneva: World Health Organization. [cited 2018 Jun 20]. https://www.who.int/whr/2007/whr07_en.pdf?ua=1
• 8. UNICEF. Progress for children: a world fit for children statistical review. Unicef; 2007.
• 12. International H. Forgotten Families: Older people as carers of orphans and vulnerable children. HelpAge International London; 2003.
• 13. UNICEF. Children in residential care: The Zimbabwean experience. UNICEF; 2004.
• 15. Assembly UG. Convention on the Rights of the Child, 20 November 1989, United Nations, Treaty Series, vol. 1577. 1989.
• 26. Transforming Institutional Care | Better Care Network [Internet]. [cited 20 Jun 2018]. https://bettercarenetwork.org/library/principles-of-good-care-practices/transforming-institutional-care
• 27. Keeping Children Out of Harmful Institutions: Why We Should be Investing in Family-based Care. Save the Children; 2009.
• 29. Roby J. Children in informal alternative care. N Y UNICEF Child Prot Sect. 2011;
• 41. Whole Child International. Publications & Further Resources [Internet]. [cited 20 Jun 2018]. https://www.wholechild.org/en/publications/
• 42. O’Donnell K, Nyangara F, Murphy R, Cannon M, Nyberg B. Child Status Index: a tool for assessment the well-being of orphans and vulnerable children–manual. Chap Hill NC Meas Eval. 2009;

• Open access
• Published: 30 September 2021

Psychosocial support conditions in the orphanage: case study of Wolisso project

• Getachew Abeshu Disassa   ORCID: orcid.org/0000-0002-5929-6112 1 &
• Dabala Lamessa 2  

International Journal of Child Care and Education Policy volume  15 , Article number:  12 ( 2021 ) Cite this article

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This study was conducted to assess the psychosocial and material services provision of Wolisso Kalehiwot Church project/center. Qualitative research design employing phenomenological approach was conducted as to reach on identifying the strengths and challenges practiced in the center. Purposive sampling techniques was used to draw ten respondents from the center (8 from orphans, 2 from staff) to respond to interview questions. The result of this study indicated that the effort made by the project is so effective in addressing the immediate need of the orphans including survival and wellbeing of these children. Consequently, the weakness in the project observed was initial recruitment problem of the orphans and unskilled staffs involving in the project and the inability to be proactive for the sustainability request for the project were seen as major. The challenges faced were identified as characteristics of the staff to handle the growing needs of the orphans, emotional instability of the children, limited access to social integration, negative attitude of the community towards institutionalization and segregation were observed as critical. Hence, institutional capacity building from both external and internal funders to maintain the projects sustainability with clear goal and policy direction is mandatory.

Introduction

Today the concept of orphan is creating some degree of confusion with regard to defining who is an orphan; how many are there; what are their characteristics; where are they found; what are the trends in orphan hood; and most importantly, what are the specific needs of orphans as distinct from other children in their communities.

Myovela indicated that orphans in industrialized countries are referred as a child who has lost both parents. However, in the context of the AIDS pandemic, orphan is defined as those who have lost both parents (double orphan) but also those who have lost a father but have a surviving mother or have lost their mother but have a surviving father (single orphan).By this definition there were over 132 million orphans in sub Saharan Africa, Asia, Latin America and the Caribbean in 2005. Sub-Saharan Africa is home to 12.3 million orphans and the number has increased rapidly in a short few years to a point in which the entire African continent appears to be overwhelmed by the “orphan crisis” Myovela ( 2012 ).

In addition, other study also indicated that, definition on “orphans” have caused some confusion, because most international organizations have used the term to refer to children who have lost one or both parents, but many people understand the term to refer to children with no parents, and the reality is that the vast majority of orphaned and vulnerable children worldwide are being care for by their surviving parents and extended family members, not in orphanages. For example, in Zimbabwe, which has had one of the highest HIV rates in the world, a UNICEF study found that over 98 percent of children who have lost one or both parents are living with families (UNICEF, 2009 ).

According to UNICEF (2010), the definition of an orphan for statistical purposes is that a child under 18 years who has lost one or both parents. A single orphan is a child who has lost one parent; a double orphan is a child who lost both parents. A maternal orphan is a child whose mother died, while a paternal orphan has lost the father. Crises such as disease or famine that affect children increase the rate of growth of orphans in the population. For statistical purposes, children are no longer considered orphans after they reach 18 years of age. Therefore, the number of orphans in a population group increases if the number of children losing their parents exceeds the number of orphans turning 18, causing the percentage of orphans in that population to rise also.

As of the updated evidence by UNICEF in 2012, UNICEF and numerous international organizations adopted the broader definition of orphan in the mid-1990s as the AIDS pandemic began leading to the death of millions of parents worldwide, leaving an ever increasing number of children growing up without one or more parents. Therefore, the terminology of a ‘single orphan’—the loss of one parent—and a ‘double orphan’—the loss of both parents—was born to convey this growing crisis. However, this difference in terminology can have concrete implications for policies and programming for children. For example, UNICEF’s ‘orphan’ statistic might be interpreted to mean that globally there are 132 million children in need of a new family, shelter, or care. This misunderstanding may then lead to responses that focus on providing care for individual children rather than supporting the families and communities that care for orphans and are in need of support.

As Global facts about orphanages prepared by: Better Care Network Secretariat, updated August, 2009 shown, poverty, seek for education access, disability, minority in ethnics, violence within the family are the common factors for children to be admitted into the orphanages in addition to loss of their parents due to leading cause of death, AIDS (Powel, 2004 ).

Although HIV/AIDS has reached almost every part of the world, no other region has been harder hit than sub-Saharan Africa, home to nearly three quarters of the world’s people living with HIV/AIDS. The figures for Africa shown that in the benchmark years of 1990 the percentage of children orphaned in sub-Saharan African countries as a result of AIDS rose sharply from (1%) to (7%) 1995, (17%) in 2000 and 25% in 2005, and is projected to reach 30% of all orphans by 2010. Among them are over 10 million children who have lost both parents. AIDS is the leading cause of death among adults ages 15–59, and it has produced 12 million orphans in the region. The rates of HIV deaths are not uniform across Sub-Saharan Africa, but are much higher in southern Africa, where as many as 15% of all children are orphans. Behind these figures is a tremendous toll of human suffering. Older children may act as caregivers for their parents or siblings who are ill, or grandparents may have to raise their grandchildren. Furthermore, poor nutrition, inability to attend school, inability to concentrate, emotional trauma and depression are among the most serious effects, and children whose families have been touched by AIDS may also be stigmatized by others, further worsening these effects (Thurman et al., 2007 ).

In connection with the mental health, children who are deprived of the parental care and a secure family environment often become vulnerable to a host of psychological problems and psychiatric disorders. Since these children are then usually reared in institutional homes set up by the government or private agencies, which provide some semblance of order into their lives, they feel discomfort of missing something. In these homes also, the problems of overcrowding, inadequate personal attention, poor academic environment, and frequent moves may affect the psychological health of these children (Kaur et al., 2018 ).

In a certain situation, then a residential childcare facility that is intended to care for children from the time of their admission until their maturity and which holds comprehensive professional treatment services for children to address their emotional, behavioral, or other problems is preferable. This is way different authorized childcare centers including wolisso kalehiwot church; orphans rehabilitation center are providing the care services. Based on this premise, the researcher intended to visit and assess the basic needs and psychosocial supports this rehabilitation center providing and the challenges encountered.

Statement of the problem

Children are one part of population group and as a population group, it has no doubt that they are increasingly major victims of the consequences of becoming destitute and orphans as parents lose their lives to AIDS and other factors. This may also put Orphaned children at disadvantaged in numerous and often devastating ways. One of the major impacts of being orphaned is lack of access and possibility of involving in schooling. Chityo et al. ( 2016 ) as cited from Gunderson, Kelly, and Jemison ( 2004 ) indicated that Children orphaned by HIV/AIDS may miss out on school, have their schooling disrupted, or perform poorly in school. They farther narrated that a number of issues affect the children's school attendance. First, children may have to take care of their sick parents and perform household chores, and often drop out of school to meet these responsibilities. Second, limited financial resources mean it is difficult to pay school fees or buy school uniforms and textbooks. Some children may be forced to drop out of school so they can work to generate income to sustain the household. Zeenat et al. ( 2018 ) further described HIV-related stigma inhibited the psychosocial functioning and well-being of children orphaned by AIDS.

It is common knowledge that the HIV/AIDS prevalence rate differ in different continents and regions within same continents. Among these different continents, the prevalence rate is high in sub-Saharan countries including Ethiopia in the world. According to the 2011 EDHS, HIV prevalence is 1.9% for women and 1.0% for men with an overall prevalence of 1.5%. This is essentially unchanged from the HIV prevalence reported in 2005 (1.4%). HIV prevalence is six and a half times higher among women living in urban areas (5.2%) than among women living in rural areas (0.8%). HIV estimates vary by age, with HIV prevalence highest among women age 30–34 and men age 35–39. HIV prevalence also varies by region, ranging from a low of 0.9% in SNNPR to 6.5% in Gambela. HIV prevalence is highest among employed women and men and those living in the wealthiest households (Ethiopia Demographic and Health Survey (EDHS, 2011 ). According to UNICEF, Ethiopia, the second-most populous nation in Africa with about 102 million people, has one of the largest orphan populations in the world. Nearly 13 percent of the children live without one or both parents (UNICEF, 2018 report).

As of UNICEF (2010) for instance, in addition to the trauma of witnessing the sickness and death of one or both parents, children are likely to be poorer and less healthy than non-orphans are and they are more likely to suffer damage to their cognitive and emotional development, less likely to go to school, more likely to be subjected to the worst forms of child labor.

The social and emotional effects of this diseases are numerous and profound. When a parent dies of AIDS, his or her child is three times more likely to die—even when that child is HIV negative. Besides, facing an increased risk of death, children whose parents have died due to HIV/AIDS also confront stigmatization, rejection and a lack of love and care. They often suffer from emotional distress, malnutrition, a lack of health care, and poor or no access to education. They are also at high risk for labor exploitation, sex trafficking, homelessness, and exposure to HIV. Increasingly, extended families and communities in highly affected areas find that their resources are inadequate to provide the basics for all needy children. In communities hard hit by the double hammer of HIV/AIDS and poverty, there are millions of children who may be orphans, or who have been made more vulnerable by HIV/AIDS (PEPFAR, 2006 ).

As a result many children left alone and being orphaned especially in respect to countries those more affected by this disease. For instance, the proportion of orphans defined as children who have lost one or both parents is greatest in Sub-Saharan Africa, with 12.3 million orphans. By 2015, the epidemic is expected to peak, and orphans will make up 9% to 12% of the total population in the sub-Saharan Africa, this data suggest a population rate of double orphans of 2.1% in sub-Saharan Africa (Myovela, 2012 ).

Therefore, it shows that HIV/AIDS is very complex issue that put children at risk of being left alone and this needs provision of different comprehensive orphans care in institution and out of institution. In this regard the contribution of different organizations including religious institution is very great to reduce the spread of HIV/AIDS and caring for orphaned. That is why different rehabilitation centers are needed to care for children who lost their parents whether both or one parents.

However, different general problems can be associated with institutional care. For example, as stated by Tsegaye Chernet ( 2001 ), many problems were challenged orphan institutions such as; inadequate funding to support programs designed for the children, shortage of trained personnel, inadequate skills training that resulted in long care in orphanages, lack of psychosocial services, and lack of long-term strategic planning. As a result of these and other problems, the children in the orphanages often elicit unwanted behavior; such as: feelings of loneliness and hopelessness, dependency on the adult population for all their needs, low self-esteem and feeling of inferiority and etc.

As different research finding also indicates, the key issues and observations in Children recruited into institutions are that: institution recruit in line with a 'vision' rather than the needs of the community; most children in the institutions assessed have families and sometimes visited them; poor child record keeping, policies and procedures are very limited; caregivers are often ill-equipped and unskilled to deliver quality child care services; social work efforts were not taken seriously in most institutions; limited awareness of the legal requirements to Children's Act or home regulations, and limited 'formal' engagement between different officials and institutions.

Thus here, the researchers intended to visit Wolisso Kalehiwot Church; orphans rehabilitation center/project and the holistic activities/services given within and out of this rehabilitation center regarding the orphans.

At the end of the study, the researcher is highly concerned to answer the following basic research questions:

What are the mission, vision, and core values of the rehabilitation center in relation to the orphanage care and services?

What procedures are in use to conduct need assessment, monitoring and evaluation in the rehabilitation center?

What are the services basically this institution providing?

What are the major problematic issues in this center in relation to service provision for orphans?

Objective of the study

The general objective of the study is to find out the holistic activities of this rehabilitation center along with its provision of services for orphans in line with regional context.

Along with this general objective, the following are specific objectives of this study:

To identify the employment of activities stated in the vision, mission and core values of the center

To examine the procedures in use during needs assessment, monitoring and evaluation

To assess the services provision and activities effectiveness in the institution in supporting emotional and personal needs of the children

To explore challenges faced and prospects related to the institution/center.

Delimitation of the study

This study was conducted in Oromia Region, South West Shewa Zone, Wolisso Town on wolisso Kalehiwot Church orphans rehabilitation center/project. The researchers intended to study basically the overall activities performed in the center in view of rehabilitation counseling.

Significance of this study

This study is so imperative; because, once problems are investigated, the findings of the research are beneficial for all the members of this center as to understand the nature of the problem and find helpful solution with professional support. The findings may also help the project coordinator, social workers/counselor, childcare givers and the orphaned themselves in general in and out of the institution by extending similar experiences to others. This study also can give an insight on the major problems under consideration with problem classification leading to analogous elucidation. In addition, the results of the study can be used as a foundation tip for further investigation on the orphan’s problems.

Operational definition of terms

Child : Person under the age of 18.

Orphan : The definition in this instance is a child who has lost one or both of his/her parent (s).

Vulnerable children : In the context of HIV/AIDS, vulnerability refers to children living in a household where the duty bearer and bread winner is ill AIDS or died of it. It also refers to children living in a household that takes in orphaned children.

Double orphans : child who has lost both of his/her parent (s).

Single orphans : child who has lost one of his/her parent (s).

Neglected orphans : child who ignored by his/her parent (s).

Care-giver : the individual, usually the mother, but in this study, social workers, care providers and other facilitators who takes responsibility for the physical, mental and emotional needs and well-being of a child in the orphanage.

Research methods

Design of the study: Brink ( 2009 ) described research design as the set of logical steps taken by the researcher to answer the research questions. It forms the ‘blue print’ of the study and determines the methodology used by the researcher to obtain sources of information. Polit and Beck (2008) as cited by Sendagala ( 2010 ), defined research design as the overall plan for addressing a research question, including specifications for enhancing the study’s integrity. Hence a qualitative research paradigm which is explorative, descriptive and contextual was used to explore and describe the issues related to orphans in the rehabilitation center.

Based on the aforementioned statements, the researcher used the phenomenological approach of the qualitative paradigm. Phenomenology is defined as a science whose purpose is to describe particular phenomena or the appearance of things, as lived experiences (Streubert & Carpenter, 2007 ). Burns and Grove ( 2009 ) also state that the purpose of phenomenological research is to describe and capture the experiences as they are lived. It is this lived experience that gives meaning to each individual’s perception of a particular phenomenon and is influenced by everything internal and external to the individual.

Population: The research had been conducted in Wolisso Town on Wolisso Kalehiwot Church, orphans rehabilitation center. Wolisso is one of the moderate towns of South Western Oromia Regional State found around 115 km away from the metropolitan. To conduct a research on all orphans, appear difficult and even complex, since their involvement and responding with intended age limit are discretionary. For this reason, a researcher attempted to consider key informants and able to respond population group in the center with limited number of orphans. Adolescents of the center in grade eight were nineteen in number presumed as able bodied to react to interview questions were selected from this population.

Sample and sampling techniques: Purposive sampling technique is a type of nonprobability sampling where the researcher consciously selected particular elements or subjects so as to make sure that the elements will have certain characteristics pertinent to the study. It normally targets particular group of people. It is a technique also called judgment sampling with deliberate choice of an informant due to the qualities the informant possesses. It is a nonrandom technique that does not need underlying theories or a set number of informants. Simply put, the researcher decides what needs to be known and sets out to find people who can and are willing to provide the information by virtue of knowledge or experience (Bernard, 2002 ; Lewis & Shepard 2006 ). Based on this suggestion, the researcher purposively selected a total of ten (10) participants. From these, 2 project facilitators and 8 orphans of the project/rehabilitation were included in the study.

Instrument : An interview guide was used to collect data. The participants were asked about their experiences regarding the rehabilitation center, service providing and assessment, monitoring and evaluation systems they are employing. In addition, observation of the participants/orphans also used to assess their emotional and behavioral feeling using observation checklist prepared by a researcher and commented by advisor. Finally, document accessible on the topic of the orphans and the rehabilitation center were used.

Procedures of data collection: Data collection is defined as the precise, systematic gathering of information relevant to the research purpose or the specific objectives and questions of a study (Burns & Grove, 2009 ) as cited by Susan Rugari ( 2012 ). The researcher initially communicated church administration and manager/coordinator of the project. After securing acceptance, the researchers determined number of facilitators involved in the interview. The identified ten respondents were communicated and appointments for participation were set. Finally, participants were interviewed based on their consent and observation was conducted at the orphanage center accordingly.

Methods of data analysis: The researcher employed qualitative method of study involving narrative data analysis techniques which was specifically description of statements (describing responses of participants in words through categorizing into different categories, and use of percentage, and tabulation of respondent’s biography). Respondents’ interview documents were put for final reference until manuscript will be published.

Ethical considerations: The following ethical deliberations have been emphasized throughout this study. Accordingly, the researcher followed a standard and scientific procedure of doing research in such a very sensitive topic. Accordingly, the subjects and study population were introduced first about the purpose of the study, keeping confidentiality of the information gathered from them. Then informed consent from respondents and relevant officials of the institutions covered in the study was obtained to discuss with and interview them. The participants were also informed that they have full right to discontinue or refuse to participate in the study.

Results and discussion

In this chapter the researcher has discussed the research findings, which include the setting location, vision, mission, values, orphans demographic characteristics, assessment mechanisms, services the center executing, presence of counseling service, monitoring and evaluation mechanisms, demographic data of the participants and themes that emerged from data analysis.

The geographical location of the center

Wolisso Kalehiwot Church, orphans project/rehabilitation center is the newly established center before 12 years and located in Wolisso Town, the capital of South West Shewa Zone, Oromia Regional State. It began services by providing basic needs services such as food, water, shelter, clothing etc. for orphans including other social services such as health and educational supports. 85% of the institutions fund is originated from external body donor, world orphans chair foundation, USA and 15% is generated from internal source, specifically by the church itself. This center has one project coordinator, two chefs, two caregivers and one cleaner.

In general, under vision, mission and core values, though they did not state in written form, verbally they expressed the following issues during interview time.

Vision—To witness that children of both sexes equally enjoy their basic needs, meet their needs spiritually, physically, academically and emotionally preparing them for a brighter future, so that they become good citizens with outstanding personality.

Mission—Their mission is to love, care; create hope and better aspirations for orphans and vulnerable children. The view is comparatively similar globally.

Governing values

We alleviate the suffering of children.

We restore and demonstrate dignity and respect for orphaned and vulnerable children.

We follow the biblical directive and standards to love and care for orphans.

We prevent the exploitation of the vulnerable, abandoned, neglected, rejected and suffering child.

We develop and maintain an approach to rescuing and caring for orphaned children that meets their needs spiritually, physically, academically and emotionally (Table 1 ).

As the above table indicates, the majorities 52.6% (10) of the orphans are male followed by 47.4% (9) female orphans children. The ages of these orphans ranges from the minimum 6 to the maximum 14. In the same table, the majority 42.1% (8) referred to different grade levels of the orphans where as 26.3% (equal numbers referred to KG-2 and KG-3) educational level followed by the least 5.3% KG-1 level orphans. Finally, the same table shown that the highest 68.42% (13) are double orphans followed by 21.05% (4) neglected orphans with the least 10.53% (2) single types of orphans.

Needs assessment mechanisms—The interview result indicated that orphans needs assessment mechanism employed during screening was not appropriate to address all children (orphaned) to be included in the institution. Formal selection procedures were not employed directly by the professionals, but the authority was gave the decision for 12 woreda children and women affair offices of South Western Zones experts being with woreda finance and economic development office to bring orphan children they identified during their work with children under their offices. The institution hoped that the woreda/district children and women affair office basically work with children and presumed that these offices easily identify orphaned children in their catchments.

Participants’ demographic data—This study involved a total of ten (10) participants. From these, two (2) were working as project facilitators in the center, while eight (8) of them were orphans from Wolisso Kalehiwot Church, orphan project/rehabilitation center. The participant ages ranged between 26 and 34 for facilitators and 6–14 for orphans. The study gave attention to gender mix where almost equivalent numbers of gender involved to provide information. Children participated in the study were from grade eight only, since they are appropriate to give consent and reliable information compared to the KG ones.

Presence of rehabilitation counseling services—Respondents underlined that except for advice, discussion and guiding services all activities are provided by nonprofessional workers; no professional rehabilitation counselor or social worker provide counseling services for these orphans in general. The entire workers in the center are engaged on activities related to educational, material and basic needs provision than focusing on emotional and psychological support for the orphan in the institution/center.

Withregard to mechanisms of monitoring and evaluation, one of the respondents indicated that monthly report, supervision of the committee statement, supervision narrations of external body such as funding body and other governmental bodies are the mechanisms they employ to monitor and evaluate their work performances.

Analysis regarding problems of service delivery

Four main themes were emerged from data analysis of this center coordinators responses. These are:

Characteristics of caregivers in the institution

Characteristics of orphans in the institution

Needs assessment, monitoring of the centers progress and evaluation of their performance, comprising statement of institutional vision, mission and core values.

Capacity related to work related problems (Table 2 ).

As of the result from interview conducted with the two people, coordinator of the project and administrator of the church indicates, a researcher identified four themes as indicated in the table above. The major issues under each themes crop up different conditions as teething troubles. Accordingly, characteristics of caregivers in the institution, characteristics of orphans themselves in the institution, inefficient needs assessment, monitoring the progress and evaluation of their performance and capacity related problems are the main themes. The respondents retorted that the leading causes of being orphaned are the epidemic of HIV/AIDS, followed by neglect from some family members due to confounding factors like poor economic capability to assist the children, instability of family structure, number of children in the family and early loss of parents before children become able to support themselves. Project workers identified that there is lack of appropriate professional or expert in rehabilitation counseling as to assist children in the orphanage project where most of the children needs emotional comfort to ease loss of one or both parents at this age. During its establishment, the project of orphan children didn’t rely on clear needs assessment tools of screening and identifying to select the orphaned children where many children lost access of involving in the rehabilitation project due to the distance of their home, lack of information and supporting agents from government offices. One of the respondents stated that these children are lucky since included in the project, even if some of the facilities and support from experts are limited. Because, many of the children who didn’t get access of inclusion to this project are left behind of education, material support for schooling, food and sheltering shortages which made them join the streets of small and moderate towns of the districts. Hence, I prefer stay here with all the shortcomings than facing street challenges for the orphaned children.

From the view point of this respondent, we can deduce that the project is better preferred than outer conditions which orphaned street children facing in the towns of the country. Many lacks food to eat, clothing, care and support, feeling of parental warmth and even right to live on the streets with all its challenges and poverty. Orphaned children included in the project are kept from harmful assaults on the street, since they are provided advice, materials for schooling and living, sheltering and guidance for future life.

Consequently, as coordinators explained, the orphaned children in the center show unhappy moods and emotions, dissatisfied in the projects activities, longing for relatives and one their family and siblings, inaptness and withdrawal behaviors. These all needs professional counselor as to assist them relieve from the challenges they face than nonprofessional advice in daily communications as indicated by respondents. Another respondent explained that the children in eighth grade feel so bad and seems difficult for project workers to manage since they ask us challenging questions like ‘for how long we stay here; what is our fate; who is responsible after graduation; what if we are not successful in schooling; … which we couldn’t answer? Actually, I sympathize their feelings even if I have nothing to bring than giving advice and sharing my experience. This explanation explicitly indicates that there is lack of professional competency to calm challenges the children raise with age difference and maturity. The worry and hesitation put them tactless as to assist the children in their future career and plan of life even though, they share the burden as human beings. The coordinators also are uncertain about future of the orphans in the project than guiding, counseling and directing the children in showing them positive future after completion of their schooling and graduation form the project. Similarly, they are doubtful of when to graduate and how to proceed, since there were no written vision, mission and core values documented than oral communications.

Responses of the orphans

The orphans included in the project appreciate the center for all the supports delivered for them. No one takes care for them, since most of them come from low income and destitute family background. They are giving thank for project founders and coordinators even though they underlined that comparing their life with their counterparts made them less involved. Analysis of interview result from the orphans was identified as of the following:

Fear of each other or fearing of being kicked by other orphans, since they share dormitory with the one who they are not accustomed with

Fear of their caregivers while she/he at times become emotional and aggressive in communicating

Sometimes their caregivers do not comfort them in motherly and fatherly manner

Bad feeling about their parental loss, especially when their caregivers not consistently show same characteristics.

The Recreational time is very limited and the belief of confinement in the center.

This result shows that they have still fear towards their roommate after 10 years of living together. They are also uncertain towards their caregivers emotional instability and attachment to children due to either personal characteristics, unsatisfied behavior towards the institution and/mood fluctuation of caregivers. The treatment some caregivers provide for the children also show variance when compared to the motherly relaxation they received before, from their actual mothers. Moreover, the loss of significant family members in life, be defeated when recognizing the children who have intact family in the schools, around their center and surrounding community.

The result obtained from orphan’s observation in the center using observational check lists shown that even though many positive behavioral and emotional characteristics observed during short time of observation, there were some adverse characteristics such as anger, verbal abuse to one another, feeling of sadness on few children and lack of involving opposite sex in group playing.

As of the response from interviewed participants regarding challenges they faced in institution, respondents indicated the following major problems. From these, the negative attitude society has towards institutionalization is the leading one., During the start period, few relatives of the orphans t request as to take back the orphans from the institution which disappointed the ones who lost both parents and have no relatives. The other problem was the commitment and support from expected from governmental bodies were challenging ones. The orphans and observation result showed that characteristics of few caregivers and orphans themselves is sometimes challenging for others. Finally, fear of the sustainability of this project due to lack of funding, since the project has contract life of 5 years with the former funding body.

This chapter presents the discussion of findings in relation to prior studies, and limitations of the study. It is basically intended in visiting, assessing, and describing the basic needs and psychosocial support given to the children at Wolisso Kalehiwot Church orphans rehabilitation center and came up with stating findings of this study. The emphasis given was on the provision of services in terms of basic needs and psychosocial supports for the orphans in regional framework.

Wolisso Kalehiwot Rehabilitation Center is religion based institution established to support children who had lost either or both of their parents due to HIV/AIDS pandemic in the zone. Orphaned children are living and supported by workers in the center, where some of the orphaned children who have/had mothers and relatives may be visited in a given period. In support of this establishment and its purpose, Jayashankar ( 2012 ) defined that ‘Orphanage is a residential institution devoted to the care of orphans—children whose parents are deceased or otherwise unable to care for them.’ Almost all of the orphans provided services in the orphanage secure care and support, since they come from poor/poorest home and streets of the zone (Wolisso). Most of the children were happy about the opportunity when they join the center. Afterwards, with the passage of time and level of maturity they reached upon today, the orphans developed emotional disturbances and instability which made them to be isolated, aggression, bad feeling and mood vacillations. Even though this research undertaking didn’t consider underlying causes or difference between different rehabilitation centers, existence of emotional trouble was inevitable. Diverse study done in India comparing institutionalized orphan and non-orphan children, Jayashankar ( 2012 ) shown that emotional problems are higher among orphan children in the institution when compared to the non-orphan children. In support to this finding, Chitiyo stated that orphans and the other vulnerable children and adolescents (OVCA) living in institutional homes are more prone to behavioral and emotional problems than others as they are deprived of a family's love and care (Chitiyo et al., 2016 ).

Tsegaye Chernet ( 2001 ) also identified that many problems associated with institutional care and challenged orphan institutions such as inadequate funding to support programs designed for the children, shortage of trained personnel, inadequate skills training that resulted in long care in orphanages, lack of psychosocial services, and lack of long-term strategic planning. In similar context, the result of this study identified correlated problems on the children in the orphanage (Wolisso Kalehiwot Church), where the children often elicit unwanted behaviors among which the following are the central ones: feelings of loneliness and hopelessness, dependency on the adult population for all their needs, and low self-esteem and feeling of inferiority.

Likewise, in the present study the researcher found that characteristics of caregiver in the institution was so difficult to alleviate existing problem of the orphaned children in the institution due to lack of professional skills incompatibility, peculiar behavior of the children, low salary that didn’t commensurate with the existing inflation of market in the country and fear of sustainability of the project. In support of this finding, a study done in Europe indicated that orphaned children in an institution needs a surrogate parents in which support is given for small number of orphans by paid adults to feed and care in the center. Browne further narrated about inadequacy of expertise knowledge and preparedness that often the staff are inadequately trained and poorly supervised, making basic mistakes such as feeding a child (who should be able feed himself) on his back in a sleeping position (Browne, 2009 ).

In addition to the poor needs assessment in the selection of orphan children to the institution, inadequate monitoring and evaluation of institutional performance was a challenge as to maintain or envisage on the progress and future of the center/project. This was one of the hectic practices the workers faced as indicated by the two respondents representing the project workers matching with the capacity related problems in provision of caring orphans in rehabilitation center. This finding, augmented by work of Barnett, signifying that ‘this is compounded by the lack of training and support of social workers themselves to help them develop alternatives for children. They are often reluctant to place children back with their families or to develop alternative family and community-based care arrangements, because they do not have the skills or adequate support to provide them (Barnett, 2021 ).

The result obtained from this study, moreover, shown that though many positive behavioral and emotional characteristics observed among orphans in the institution; there were also negative characteristics such as anger, verbal abuse, sadness, and lack of involving opposite sex in group playing. By the same analogy, prior study shown that children who live in the orphanage, unfortunately, suffering from multi-problems. For instance, malnutrition and environmental deprivation of varying degrees are common. Furthermore, orphan children do not receive proper physical and emotional care, because they are unaccompanied, displaced, and lacking family support. If this phenomenon is continued unchecked, it still highly affects the country’s development as cited by (Shukla & Shukla, 2012 ). In this regard, the author believed that poor handling of the orphan children and the mistrust arising from poor management can lead to different forms of disturbances which need further investigation.

Children assigned to the project develop behavioral problems mainly due to the isolation they faced in the institution and or their aspiration as to notice real family among the surrounding community. Besides, lack of professional competence to handle existing problems of the orphans was another barrier which could aggravate the problem. In support of this finding, Fawzy and Fouad shown that although the basic material needs could be met, orphans in orphanages were almost totally separated from the outside world and could not access normal families and society relations and this would very likely harm their personality in adulthood and social skills (Fawzy & Fouad, 2007 ). Finally, the finding in this study identified that there is high skill gap between the institution under study and others, where in the normal circumstance, which assigns counselors and social workers as to address emotional and behavioral problems of children in rehabilitation centers. Availability of trained human power as to assist and being surrogate parent is critical, since the institution is working on developing children who can take responsibility of their own and country in the future career. But, it was recognized that there is huge shortage of skilled human power and professional assignment in the institution.

Conclusion and recommendations

Conclusions.

This qualitative study was intended at visiting, assessing, and describing the basic needs and psychosocial support given for children in Wolisso Kalehiwot Church, orphanage center/project. The emphasis was on the provision of services in terms of basic needs and psychosocial supports. As information gathered from project coordinator, church administration, orphans themselves and professional observation of the services, the most commonly identified issues leading to ineffective work performance were, characteristics of caregivers in the institution, characteristics of orphans themselves in the institution, poor monitoring and evaluation of their performance progress and capacity related problems. It is evident that all the efforts made to save life of the orphaned and maintaining wellbeing of these children is blessing effort so far done in the town and the zone. This view was supported by all members of the project, since it opened bread winning center for workers and a paradise for the children with all its limitations.

External challenges the researcher identified as major problems were, negative attitude of the society towards institutionalizing this orphans, especially at initial stage; intrusion of relatives of the orphans to take away the orphans from the institution; failures observed during selection of these orphans; the insufficient commitment and restraint to support this project by governmental bodies were some of the challenging issues. Fear of sustainability of this project owing to lack of external funding bodies to run the program was another foremost challenge for the workers and orphanages in the center, since only about 5 years contractual agreement was left.

The institution is one of the leading rehabilitation centers in the zone and town, where the poor, specifically orphaned children either living with extended family in the route or supported by interested groups or taken from streets of Wolisso and surrounding small towns benefit of the services rendered. The center lost or missed its predestined goal from clients (orphaned children) selection to recruitment of staff members working in the institution. Even though the center has certain drawbacks, it is the shelters that assign surrogate family as to assist the wellbeing and all life needed resources for the children which they never get outside the campus. But, emotional assistance and psychosocial support to be rendered in the center is missing due to the hiring of unskilled and uncertified employee to support children which made life of the orphans in the center more intricate and challenging.

Recommendations

Based on the results of the study recommendations were drawn. The researcher suggested that it was better if the organization used assessment tools like interview, set of questions that include physical, psychological, and social aspects to identify clearly which orphan must be included in the support system. Even though this institution is on fulfilling the basic needs of these orphans, it lacks technical operations like vision, mission and goals determination which has to be stated clearly as to show its destiny. There is a need for professional counselor/social worker who figure out on physical, psychological and social development of a child and assist in problem solving of these orphans. There is also a need for proper monitoring and evaluation experts as to see whether the organizational objectives were/are achieved. The institution must record and document, the activities exercised in the organization for the purpose of performance observation/evaluation and putting action plan to act on predicted challenges. Finally, the institution is further expected to provide training for assigned social workers and/or caregivers to ensure proper paraprofessional oriented service delivery.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.

Barett T (2021). What is an orphanage? Wikibuy review: A free tool that saves you time and money

Bernard, H. (2002). Research methods in anthropology: Qualitative and quantitative approaches (3rd ed.). Altamira Press.

Google Scholar  

Brink, H. (2009). Fundamentals of research methodology for health care professionals . Juta & Company.

Browne, A. (2009). Developing Language and Literacy . SAGE publications India Pvt.

Burns, N., & Grove, S. (2009). The practice of nursing research: Appraisal, synthesis and generation of evidence (6th ed.). Saunders Elsevier.

Chitiyo, J., Chityo, A., & Chityo, M. (2016). Psychosocial Support for Children Orphaned by HIV/AIDS in Zimbabwe. Journal of Childhood Education., 92 (6), 465–9.

Article   Google Scholar  

EDHS – the 2011 Ethiopian Demographic and Health Survey.

Fawzy, N., & Fouady, A. A. (2007). Prevalence and relationship of religiosity level and suicidal ideation in depressed patients. Egyptian Journal of Psychology, 35 (3), 138.

Gunderson, J. (2004). Trustworthiness appraisal deficits in borderline personality disorder are associated with prefrontal cortex, not amygdala, impairment. NeuroImage 8 (3).

Jayashankar, K. (2012). Racial and ethnic differences in receipt of immediate breast reconstruction surgery: Do hospital characteristics matter? Motilal Banarsidas publishers private limited.

Kaur, R., Vinnakota, A., Panigrahi, S., & Manasa, R. (2018). A descriptive study on behavioral and emotional problems in orphans and other vulnerable children staying in institutional homes. Indian Journal of Psychological Medicine., 40 (2), 161.

Lewis, J. L., & Shepherd, S. R. (2006). Culture and communication: Can landscape visualization improve forest management consultation with indigenous communities? Landscape and Urban Planning, 77 (5), 291–313.

Myovela B. (2012).The Prevalence of Posttraumatic Stress Disorder and Associated Mental Health Problems among Institutionalized Orphans in Dar es salaam, Tanzania. Journal of clinical child and adolescent psychology.

PEPFAR (2006). An overview of HIV prevention research from the 2006 Implementers Meeting Theo Smart 2 August

Powell, G., et al. (2004). ‘Children in residential care: The Zimbabwean Experience’, UNICEF & the Ministry of Public Service, Labour & Social Welfare. Retrieved August., 24 , 2008.

Sendagala S. (2010). Factors affecting the adherence to antiretroviral therapy by HIV positive patients treated in a community based HIV/AIDS care programme in rural Uganda: a case in Tororo district. http://hdl.handle.net/10500/5356

Shukla, B., & Shukla, D. (2012). Microstructural abnormalities of short-distance white matter tracts in autism spectrum disorder. Neuropsychologia, 49 (5), 1378–1382.

Susan Rugari, M., Cannon-Diehl, M. R., & Terri, S. (2012). High-fidelity simulation for continuing education in nurse anesthesia. A ANA Journal, 80 (3), 191-6.

Streubert, H., & Carpenter, D. (2007). Qualitative Research in Nursing: Advancing the humanistic imperative . Wolters Kruwel/Lippincot Williams & Wilkins.

Thurman, T., Hoffman, A., Chettersi, M., & Brownell, C. (2007). Triggers of inflammation after renal ischemia/reperfusion. Journal of clinical immunology., 123 (1), 7–13.

Tsegaye Cherinet (2001). The Orphanages and its practical application in life changing of children. The Ethiopian journal of Health Development 7(5).

UNICEF (2009). The State of the World’s Children. Celebrating 20 Years of the Convention on the Rights of the Child, Brodock Press

UNICEF (2018). Ethiopia: AIDS Orphans live, grow in uncertain future (Annual report)

Zeenat, Y., Charlene, E., & José, F. (2018). HIV-related stigma and the psychosocial well-being of children orphaned by AIDS: a systematic review. Vulnerable Children and Youth Studies., 13 (3), 247–258.

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Acknowledgements

The first and foremost appreciation goes to the elder counselors and Gadaa leaders involved in this study who keenly gave me rewarding information. My grateful appreciation also goes to Jimma University for their financial assistance

Jimma University is government institution supporting its academic staff conduct community based research that will contribute to nation building, development and change life of the community in its application.

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Getachew Abeshu Disassa

Department of Psychology, Ambo University, Wolisso CampusWaliso, Ethiopia

Dabala Lamessa

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Both Authors contributed a lot for the successful completion of the manuscript where the corresponding author plays significant role of supervisory position, and search for journals while the co-author developed proposal, data collection and organization of final draft. Both authors read and approved the final manuscript.

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The corresponding Author, Getachew Abeshu is a Ph.D. holder and Associate professor of counseling psychology at Jimma University, Ethiopia. He has numerous publications on local and International journals on psychosocial support, indigenous counseling and disability areas.

Mr. Dabala Lamessa is a Ph.D. candidate at Addis Ababa University in the area of mental health. His research interest is psychosocial support and has a number of publications in the area.

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Disassa, G.A., Lamessa, D. Psychosocial support conditions in the orphanage: case study of Wolisso project. ICEP 15 , 12 (2021). https://doi.org/10.1186/s40723-021-00089-3

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The Vulnerabilities of Orphaned Children Participating in Research: A Critical Review and Factors for Consideration for Participation in Biomedical and Behavioral Research

Rachel t. thompson.

Indiana University (USA)

Eric M. Meslin

Paula k. a. braitstein, winstone m. nyandiko.

Moi University (Kenya)

Samuel O. Ayaya

Rachel c. vreeman.

Orphans are a subpopulation with a unique set of additional vulnerabilities. Increasing focus on children’s rights, pediatric global health, and pediatric research makes it imperative to recognize and address unique vulnerabilities of orphaned children. This paper describes the unique vulnerabilities of the orphaned pediatric population and offers a structured set of factors that require consideration when including orphans in biomedical research. Pediatric orphans are particularly vulnerable due to decreased economic resources, psychosocial instability, increased risk of abuse, and delayed/decreased access to healthcare. These vulnerabilities are significant. By carefully considering each issue in a population in a culturally specific and study-specific manner, researchers can make valuable contributions to the overall health and well-being of this uniquely vulnerable population.

Populations can be defined as “vulnerable” using various parameters ( Levine et al., 2004 ). Participants may be vulnerable due to socioeconomic status, age, gender, or simply the timing of the particular study as may occur in times of catastrophic illness, natural disasters, and political upheaval. Most regulatory and oversight documents for research involving human subjects obligate researchers to provide additional protections to vulnerable populations. For example, in the United States additional protections are specifically described for prisoners, pregnant women and fetuses, and children (US Department of Health and Human Services, n.d.). The ethical and legal obligation to provide additional protections to vulnerable subjects is derived from recognized principles of bioethics, including those three initially described in the Belmont Report: respect for persons, justice, and beneficence ( US Department of Health and Human Services, 1979 ). Refinements to these principles, for example by Beauchamp and Childress, have enjoyed support, and are also reflected in major international guidance documents including the Declaration of Helsinki ( Beauchamp, 2009 ). The common ethical commitment found in all protections of vulnerable research subjects is to protect those incapable of protecting themselves against harm or exploitation.

But context and geography matter. Despite the emphasis on these protections, challenges arise as researchers begin to include increasingly vulnerable populations, such as African children, in their studies. Even though ethical principles may enjoy support, their local interpretation matters. Basic definitions of who comprises a population such as “orphaned children” may be a source of contention, while other definitions such as children as a vulnerable population may not be universally accepted.

Kipnis (2003) has described seven specific vulnerabilities of the pediatric population, including the possible undervaluing of their rights and interests in society and the subjugation of their authority to others ( Figure 1 ). The ethical obligation to protect vulnerable pediatric research participants from harm is met largely through two mechanisms: (1) the additional protections that institutional review boards may impose on researchers, and (2) the involvement of legally authorized representatives—most often a parent or guardian to act in the participant’s best interests. But what should happen when parents or guardians do not exist? Orphaned children have no such advocates, and therefore no one to act in their best interests.

Kipnis’s seven vulnerabilities.

It is unclear how to ensure adequate protection for this vulnerable population, and raises the question of whether orphans should be included in health research at all. The necessity requirement dictates that vulnerable individuals should be included only if one could not do the research using less vulnerable populations. Additionally, the subject requirement demands that the research addresses a question that is unique to the vulnerable population. Following these requirements might result in the exclusion of children from research, to the detriment of the pediatric population. Although this may seem protective, there are many important reasons to include children in research. For example, across the developmental spectrum from infancy through adolescence, children have different physiologic and metabolic profiles that influence the effects of a medication, making it imperative to evaluate medications in children and not just in adults. Similarly, the orphan population should not be summarily dismissed from biomedical research. Orphans face particular physical, social, and emotional challenges, for which the effects and solutions may only be illuminated if research is conducted in this particular population. Both the necessity and the subject requirements should be carefully considered and applied to each new protocol involving orphans. As orphans are subject to a substantial share of health burdens, researchers may also find that the principle of justice directs us to answer important questions to improve the health and care of the 132 million orphans in sub-Saharan Africa, Asia, Latin America, and the Caribbean ( UNICEF, 2009 ).

A Theoretical Case Study in the Vulnerabilities of Orphans in Research Ethics

Consider a theoretical case of a proposed HIV vaccine trial in rural Kenya. Consideration of this case will serve as a springboard to conduct a critical review of the participation of orphans in health research, and then yield a series of distinct factors that must be considered for the participation of orphans in biomedical and behavioral research.

Prevalence of Orphanhood Demands Consideration for Health Research

HIV vaccine research has, to date, excluded children from clinical trials. If researchers were to pursue a clinical trial including children in Kenya, the involvement or exclusion of orphaned or vulnerable children would be critical to the study design. As the HIV epidemic continues in Africa, mortality rates from HIV/AIDS are expected to continue to rise, and the number of children orphaned will continue to increase exponentially ( Subbarao & Coury, 2004 ). In sub-Saharan Africa, there are an estimated 53 million orphans, with over a quarter orphaned by HIV/AIDS ( UNICEF, 2006 ). Kenya has an estimated population of greater than 39 million people, including an estimated 2.5 million orphans, almost half of whom have been orphaned by the HIV/AIDS epidemic ( UNICEF, 2006 ; Kenya National Bureau of Statistics, 2010 ). The sizeable population of children orphaned from HIV and other causes argues for the inclusion of this population in biomedical and behavioral research. In addition to the general size of this population, the large number of orphans whose lives have been affected by HIV and who may be at higher risk for HIV positions them as relevant subjects. Guidelines do suggest that individuals, such as wards of the state, identified as vulnerable should not be eligible to participate in research that represents more than greater than minimal risk (US Department of Health and Human Services, n.d.). While it is imperative to ensure the safety of the study population, it is also irresponsible to summarily dismiss a group of individuals without consideration of potential benefit/harm ratios. The definition of minimal risk may vary based on the risks inherent in the group’s everyday life. And even the identification of a group as vulnerable or the definition of the term “vulnerable” may require reconsideration. Levine et al. (2004) argue that vulnerability can be both too broadly and too narrowly defined and propose that contextual interpretation of vulnerability should be applied to individuals and groups. Similarly, Shivas (2004) argues that almost all humans can be considered vulnerable in research; however, it is the context of each study by which we should assess potential harm. Analysis protocol by protocol for vulnerability and risk, as opposed to blanket groupings of “vulnerability,” ensures that individual and contextual elements are considered. Although minimal risk may be present, it is important to consider the broader context of the procedure to assess for individual vulnerabilities and potential benefits. In order to safely include orphans in research, their unique population vulnerabilities must be directly addressed in a thoughtful and comprehensive manner. Examining three categories of vulnerability—socioeconomic, psychosocial, and medical—experienced by orphaned children in Kenya participating in an HIV vaccine trial will provide a lens through which to consider the ethical considerations when involving orphans in bio-medical research.

We will consider an HIV vaccine trial that would consist of a nonviral vaccination that is given in a two-part series. The trial seeks to enroll Kenyan participants of ages 18 months to 18 years. The study would be conducted in the north Rift Valley and western Kenyan provinces in a large/moderate-sized city with a large hospital and surrounding satellite clinics. Participants will be recruited from schools, health centers, the Moi Teaching and Referral Hospital, and local organizations. A small financial incentive covering the cost of travel to clinic visits will be provided for all participants. Any participant who comes to a recruitment session will also be reimbursed for travel costs (no more than 400 Ksh/visit). During the study, participants would be required to provide a list of all members of the household and proof of custody of that child. Orphans are defined as any child under the age of 18 where either parent or both parents are deceased ( UNICEF, 2009 ). Each participant’s status as to orphan, double orphan, or custody arrangement would be noted. Prior to enrollment in the study, participants would be invited to discuss the study and consent in a private environment.

Complete physical exam and mental health screening will be conducted upon enrollment in the study. In addition, each participant will have preliminary testing for HIV and will be retested to ensure seronegative status in accordance with age-appropriate guidelines. Participants enrolled in the study will be followed by a local clinic in Kenya for the duration of the vaccine series and for five years after the vaccinations, with six-month testing for HIV infection and three-month follow-up visits during the intervals between vaccinations to assess the children’s general health status. Parents and guardians will be reminded of each visit with cards and phone calls prior to each visit. Two copies of color-blocked cards with medication schedules and visits will be provided to each participant. Case participants will receive the vaccine, and a matched control cohort will be followed prospectively from the same clinic.

Socio-economic Vulnerabilities of Orphaned Children in Health Research

There are three central socioeconomic vulnerabilities of orphaned children: their baseline socioeconomic status, educational status of caregivers, and particular economic deprivations for subpopulations that vary by location ( Table 1 ).

socioeconomic vulnerabilities of orphans.

Socio-Economic Status

First, the baseline economic status of the orphan population should be assessed. Most orphans in sub-Saharan Africa live in poorer households than non-orphans, and their care tends to fall on poorer homes headed by the elderly or by women ( Case, Paxson, & Ableidinger, 2002 ). A lack of material wealth places orphaned children at increased risk of poorer health and well-being, but also at increased risk in terms of participation in biomedical research. Their increased poverty may make them more susceptible to pressure to participate in studies because of the incentives or perceived benefits they may receive. Orphaned children, or their caregivers, may feel compelled to participate in research in order for their caregivers to receive even small monetary incentives that are not compelling for families with more resources. Researchers must investigate the baseline status for their population and give special consideration to providing appropriate incentives for study participation without inadvertent economic coercion of orphans or their family units. Community expectations and perceptions are significant in evaluating an approach to study recruitment and participation. If research has been conducted in the community before, preconceived ideas about compensation, care, or level of involvement may already exist. While the lower socioeconomic status might render these families more vulnerable to being influenced by financial incentives, it also creates health vulnerabilities for the orphans. These children’s increased health risks are an important reason to include them in biomedical research with the potential to benefit their health, yet they might also be susceptible to participation in research to gain access to healthcare and other services.

Case Ethics

A potential first strategy for investigators would be to conduct online research using worldwide databases to investigate the economic status of the countries of interest. To contextualize this economic information for a particular setting, the researcher could then have conversations with key community members to verify that the study is appropriate for the given community and that proposed incentives are appropriate in accordance with the local economic climate. Community leaders would be a valuable resource for discussions of possible complications and provide introductions to facilitate a discussion with the whole community. Researchers should consider community discussions as a form of community assent for study participation ( Naanyu et al., 2011 ).

Frequently, the caregivers responsible for protecting the interests of orphaned children may themselves have only a rudimentary education, speak primarily in local dialect, or be unable to read and write. Delineation of the scope of the research study can be a frustrating communication challenge. Limited education may make it difficult for participants to understand and weigh the concepts of risks and benefits. Lack of numeracy makes it more difficult to decide whether a risk is significant. Perceived or real increased access to healthcare as part of research participation can often act as an independent benefit in the caretaker or child’s rationalization process. In economically limited countries where numerous NGOs and other charitable organizations exist, caretakers may have the expectation that the child will be “taken,” and this needs to be clarified in the context of the study. In Kenya, many caregivers may believe that participation with a research study or nonprofit organization means that the child will also be “taken,” meaning a charitable organization will house, provide food for, and/or educate orphans, sometimes in conjunction with research studies providing healthcare ( Nyambedha, 2008 ). The possibility of an orphan being taken is often an implied benefit in the mind of the caretaker, and so researchers must carefully delineate the scope of care to be provided before and after study participation (ibid.). A study involving orphaned children in this population should take specific steps to address these expectations, including a special emphasis on describing what type of healthcare will be included and the duration of this healthcare for each patient and parent.

Potential strategies to convey information about study procedures, risks, and benefits would include using simplified handouts with a basic timeline for literate guardians and children. For less literate persons, a verbal explanation should be provided, the guardian and child can be asked to repeat back the information to clarify comprehension, and studies could also provide a pictorial schedule of clinic visits, the timeline of the study, and associated benefits such as aid with transportation fees. All case materials should be translated into both the common language and local vernacular, and translators should be available at all clinic visits, consents, and procedures.

Subpopulation Economics

Particular attention should be paid to identifying any increased risks for subpopulations within this already vulnerable group. In Kenya, recent surveys demonstrated that total orphans, children who have had both parents die, were more often found in the poorest households, indicating that particular types of orphans may be at increased economic disadvantage and thus increased vulnerability ( UNICEF, 2006 ). Within a particular culture, the rights to monetary inheritance and property inheritance can also alter the child’s economic status significantly. For example, in sub-Saharan Africa, there exists a practice of property snatching or stealing property rights from female-headed or child-headed households, and this is more likely to affect orphans’ households ( Wakhweya, 2003 ; Chipfakacha, 2002 ). In locations where property snatching is prevalent, women can be forced out of their home by their deceased husband’s family. If both parents are dead, the father’s family may claim the property and forcibly expel the children, leaving them destitute and on the street. These children in turn have significantly decreased resources, increased familial stress, and are, as a result, increasingly vulnerable to financial pressures or the incentives offered by research groups as part of standard practice ( Subbarao & Coury, 2004 ).

Researchers can address the economic vulnerabilities of orphaned children in multiple ways. First, they need to be aware of the particular cultural context of the study, including social stressors that may not be apparent to outside observers. Qualitative inquiry within the community may be a crucial first step to an understanding of the specific context. By increasing awareness of culturally biased socioeconomic stressors, the research team can guard themselves against unintentional population bias. In areas where problems have been identified, for example in areas where property snatching is a known occurrence, it would be unwise to recruit patients for the vaccine study solely using locally established aid centers, since the majority of displaced persons in this community are women and children. Thus, a thorough understanding of the particular economic vulnerabilities of orphans in a particular setting can guide appropriate, protective research methods. The precautions needed may vary based on the type of research. One could argue that, in a case of a simple survey data collection study, neither the risks nor the incentives would be of great enough import to exclude orphans from the study. However, in the case of an HIV vaccine trial, the risks would likely be greater, and the financial incentives used may induce economically deprived, orphaned children to be overly represented and overly exposed to these risks. Examining a community framework with regard to cultural and legal characteristics can provide insight into local economic policy that influences the study population.

Psychosocial Vulnerabilities of Orphaned Children in Health Research

An orphan’s economic vulnerability is significantly related to the psychosocial construct of daily life. Psychosocial vulnerabilities of orphans can be classified into three main areas of focus: caregiver instability, accessibility, and stigma ( Table 2 ).

Psychosocial vulnerabilities of orphans.

Caregiver Instability

Orphanhood shapes the cultural structure around the child in key ways, most notably in terms of which adults are present in the lives of the child, the socioeconomic ramifications of altered family structure, and how the child receives care. Orphans frequently have to move following the death of one or both parents, creating an unstable living environment as they change caregivers ( Young & Ansell, 2003 ).

The social ramifications from altered family structure, unstable living arrangements, and uncertain social frameworks increase orphans’ vulnerability. As caregivers change, the child must adjust to a new home, family, rules, and expectations (ibid.). The cultural heritage of the child may play a significant role in determining if maternal or paternal relatives gain custody of the child. Orphans may have a tenuous place within a household where their relatives are already under significant financial or social strains. Orphans also may feel more strongly the need to obey the authority figure in charge of their living situation, such as the director of a children’s home, out of fear and uncertainty of possible displacement, or because it is cultural to obey those in authority. Orphans may have few if any options to sustain a living if they are kicked out of their adoptive home. These pressures could make a child unlikely to voice any disagreement with a guardian, even if the guardian’s decisions place them at risk or discomfort. All these sources of stress within a shifting societal framework can create a situation where children or the families may seek out alternatives means of supporting the family that would not have been previously considered. This could create a pressure to participate in research, discounting potential risks and seeking perceived benefits.

Research across 26 sub-Saharan countries, including Kenya, found that care for double orphans varies by gender, with boys more likely to be cared for by grandparents and girls more likely to live with other relatives ( UNICEF, 2006 ). In Kenya, 51% of double orphans and single orphans not living with a surviving parent are being raised by grandparents (ibid.). The role of grandparents, extended family, or institutions in which orphans may live can have a significant effect on children’s ability, willingness, and desire to participate in current research. Having more elderly or female caretakers not only means that orphans live in households with fewer financial resources, but they also may be households that lack status within the community ( Case, Paxson, & Ableidinger, 2002 ). The combined financial impoverishment and lack of social standing may make orphan caretakers particularly prone to involving their young charges in more risky research if either financial gain or healthcare options are seen as benefits or if involvement is perceived to increase the chance of the child being provided for in other ways. Researchers should be aware of potential complications in custodial arrangements and should require proof of guardianship.

Accessibility

Orphans in sub-Saharan Africa bear an increased workload within both child-headed households and foster families ( Subbarao & Coury, 2004 ). The increased workload borne by orphans could alter their participation in health research in several ways. Orphans may feel increased responsibility to provide for themselves or their family, and this could exclude them from research participation because they need to work. An increased sense of responsibility to provide for themselves and their family also may increase the risk of influence by potential monetary benefits. Alternatively, as the orphan is required to shoulder a larger portion of the family’s responsibilities, caregivers may be less inclined to allow him or her to participate in a study that would remove the child from the workplace for significant amounts of time. There may also be a social desirability bias whereby guardians may not want a child to participate, or be known to researchers, if they are concerned they will get in trouble for not taking care of the child or be perceived to not be providing adequate care.

As increased workload can lead to exclusion from studies due to workforce demands, increased workload can also decrease school participation, decreasing orphaned children’s exposure to studies and decreasing the likelihood of literacy and educational development necessary to understand and participate in a study. Lack of participation in school places these children at risk for exclusion from studies through simple geography. The easiest way to survey a population of children and have a consistent way of finding the enrolled children for follow-up or further treatment is through school enrollment. Orphans are at risk of exclusion from such studies as they have higher rates of absence from school and lower enrollment ( UNICEF, 2006 ). This is consistent with studies which have demonstrated that a parent’s financial situation is directly related to children’s educational outcomes, and as previously discussed, orphans tend to live in poorer households ( Ntanda et al., 2009 ). Studies that solely recruit from schools in a population with a significant number of orphans would have a considerable bias toward under-representation of orphans. These selection biases might threaten the scientific validity of a study if the sickest, poorest, or most at-risk subpopulation of children are not evaluated along with others of their age.

In addition to this selection bias, the orphans are also vulnerable due to altered educational experience and health literacy. For example, investigators may need to evaluate the educational resources available and utilized when considering a child’s ability to assent. The American Academy of Pediatrics guidelines (1995) state that seven years is the age at which assent can be obtained, based on developmental milestones in children. Children who are socially and educationally deprived may reach these milestones much later in life. Children who are not in enrolled in school will fall behind their peers in their ability to read and write. If orphans are to be included in a research study, not only must there be consideration for assent procedures with regard to educational and developmental level, but lack of participation in schooling must be acknowledged as a potential selection bias. In addition, the culture of children not questioning decisions made by the guardians may influence the ability of a child to assent.

In our HIV vaccine trial, for example, frequent laboratory monitoring would be required and may be inconvenient for a family who relies on the orphan’s work. Attempting to work with families to arrange for convenient testing sites within local communities and flexible hours of clinic offices based on community needs and work schedules may help to improve this outcome. An agricultural-based community, for example, would likely have a better response rate if clinic hours were held after prime working hours or if the vaccination schedule could be targeted to fall outside of peak harvest times.

While alternative methods for explaining projects and signing documents can be designed, it is important to consider the educational limitations of the study protocol when including orphans. The explanation of a complicated scientific concept through pictures or movies may be done, as in the case of an HIV vaccine, but it requires extra investment from the research team. If orphans are to be included in a research study, not only must there be consideration for assent procedures with regard to educational and developmental level, but lack of participation in schooling must be acknowledged as a potential selection bias with orphans underrepresented in a sample drawn from schools.

Orphans’ exposure to abuse, increased stress, and stigma attached to certain subpopulations of orphans are additional psychosocial vulnerabilities that must be considered for ethical health research participation. The increased isolation that accompanies orphans’ shifting social framework and stigmatization can lead to increased risk of exploitation and abuse. Studies from Malawi indicate an increased risk of abuse with orphanhood ( Muhwezi, Muhangi, & Mugumya, 2009 ). Certain orphan populations may face additional burdens. In South Africa and Namibia, orphans who live on the streets have increased exposure to prostitution, drug abuse, HIV, and crime, compounding their traumatic experiences ( American Academy of Pediatrics, 1995 ; Subbarao & Coury, 2004 ). While the subpopulation of street children in research requires additional considerations for research inclusions that are beyond the scope of this paper, exposure to high-risk activities and settings are significant vulnerabilities in orphans. While these increased risks contribute to orphans’ vulnerabilities, they also provide an argument for their inclusion in health research. Orphans’ increased risk for contracting HIV is precisely why orphans should be included in research related to HIV, particularly research related to vaccine prevention strategies from which this population could greatly benefit. While the risks of vaccine trial participation are typically considered greater than minimal risks, the risk for HIV infection in orphans’ daily life is significantly higher. Thus, the argument could be made that adolescents approaching majority age should be able to assent to participation in such a study.

The psychological status of orphans, and the associated vulnerabilities, are also influenced by how they became orphans. In Kenya, large numbers of children are orphaned by AIDS every year. Children orphaned by AIDS may be singled out at school, experiencing stigma and bullying more than other orphans and non-orphans, both of which directly correlate with their mental health ( Subbarao & Coury, 2004 ; Boris et al., 2006 ). Children orphaned by AIDS are also more likely to suffer from post-traumatic stress disorder, recurrent trauma, anxiety, and depression, to perform more poorly in school, and to lack self-esteem compared to other orphans ( Pelton & Forehand, 2005 ; Bhargava, 2005 ). Studies from Rwanda and Mozambique have cited orphanhood as an independent risk factor for increased depression and social isolation ( Boris et al., 2006 ). Thus, the psychological well-being of the child and the mental health of the population involved should be closely examined and plans enacted to either exclude at-risk participants or provide support to ensure that no further harm is caused. Support provided may include psychological counseling, social services support, or care extended to psychiatric medicine. Studies from Zimbabwe have associated orphanhood with increased stress directly related to decreased social support ( Gilborn et al., 2006 ).

The stigma associated with HIV/AIDS is significant, which also impacts how recruiting, confidentiality, and maintenance of records within the study are handled. Even for a prevention trial for a vaccine, it is critical to consider any possible social ramifications for these children in being associated with such a controversial disease. The stigma that could be associated with participating in an HIV-related trial requires extra protections for their confidentiality. In a population with an already elevated risk of isolation and accompanying mental health issues, the stigma attached to being associated with an HIV trial could be significant and detrimental.

As a researcher, it is crucial to be aware of such comorbidities in a study population, as they render the children more vulnerable. To adhere to the principle of nonmaleficence, a researcher needs to be aware of how orphaned subjects might be at more risk from psychological trauma or from being further stigmatized. Depression scales or other mental health screening tools may be of great use to researchers to identify orphans who may be particularly vulnerable and subsequently provide additional support, such as additional counseling or community resources, for participants. In considering the orphan population for inclusion in a vaccine trial, for example, depression or social isolation might make orphaned children more willing to discount risks to themselves or to overvalue a perceived social benefit from study participation.

Physical Vulnerabilities of Orphaned Children in Health Research

Physical health, as well as mental health, plays a significant role in the vulnerabilities of orphans related to their developmental stage, differential access to healthcare, and adherence to healthcare routines ( Table 3 ).

medical vulnerabilities of orphans.

Development

Children are rendered vulnerable because of their developmental process. Because of their developmental immaturity, in most settings, young children cannot provide legally authorized informed consent for their own treatment or for participation in research. Moreover, children lack resources such as money or property that would give them more socioeconomic power. Medically, children have unique parameters for physiologic and psychological development that change constantly with age and growth, creating an additional set of vulnerabilities. Infants can be at greater risk of harm from particular medications or treatments due to physiologic immaturity in how they metabolize medicines or respond to a given therapy, altering the risks and benefits balance they would experience in clinical research. School-age children begin to develop a sense of the permanence of death, influencing their ability to weigh the risks and benefits of a particular course of action. Adolescents are transitioning to physical maturity while still displaying a risk-taking profile that varies significantly from adults. While these are not unique vulnerabilities of orphans, the real versus presumed developmental stage of each orphan must be taken into consideration. Physiologically, nutritionally deprived bodies will not metabolize medications or tolerate treatments in the same manner as healthy organ systems. Thus, evaluation of children for both psychological and physiological development is crucial prior to initiation of a study.

Diagnosis and Treatment

Orphans may be less likely to access healthcare services. The orphans’ role in the family and relationship with their caregiver have been associated with differential presentation to health clinics, government-run institutions, and traditional healers. Orphanhood in Uganda and Kenya has been shown to predict delayed access to healthcare, with orphans with HIV receiving antiretroviral therapy at an older age and, in Ugandan studies, with more advanced disease ( Ntanda et al., 2009 ; Nyandiko, Ayaya, & Nabakwe, 2006 ). In addition, Deininger et al. (2003) have shown that children in foster care have significantly less access to healthcare services, and a significant increase in the number of days of being sick prior to seeking treatment for orphans. Delays in seeking healthcare also have a significant effect on the health status of children presenting for research studies. Sicker children and their families may be more likely to agree to participation in research out of desperation, but they also may be more vulnerable to any health risks from research participation.

Clear inclusion and exclusion criteria for the proposed study are vital, as well as to consider recruiting strategies that will reach children who may not have regular access to the healthcare system. In addition, it would be beneficial to outline how the study will address the varying presentations of orphans at the time of enrollment, as well as plans to meet the health needs of any study participants. In the HIV vaccine trial, it would be important to consider the time delay with seroconversion post-exposure and how to minimize delays in diagnosis among children who might be less likely to return to the clinic.

Not only are orphans sicker at presentation, but issues of adherence to treatment can become a significant issue without parental involvement. Relationship dynamics play a crucial role in adherence to treatment protocols and follow-up healthcare visits. In other work by Vreeman et al. (2009) , the presence of “an enabling cultural-social fabric” was the key to the care of children, including pediatric medication adherence, in a setting such as Kenya. The caregiving structures for orphans may play very distinct roles for issues such as taking medicines or bringing a child to clinic; in previous work in Kenya, being an orphan was associated with worse medication adherence among HIV-infected children, but with more consistent clinic attendance ( Vreeman et al., 2008 ). Considering an intervention with long-term outcomes, such as an HIV vaccine trial, the ability to continue to participate in follow-up care and continued health monitoring should be carefully considered.

The social support that orphans do or do not receive over time can have a critical impact on their health and well-being when participating in biomedical research. Providing these children with additional resources such as transportation reimbursement for clinic visits may help to improve clinic visit show rates. Concordantly, medication adherence could be increased by simplifying dosing regimens and using packaging appropriate for children and people who may be illiterate.

Pediatric orphans are a vulnerable population due to decreased economic resources, psychosocial instability, increased risk of abuse, and delayed/decreased access to healthcare. These vulnerabilities are significant, and they have the potential to affect the orphans’ ability, willingness, and likelihood to participate in biomedical research. For researchers, these vulnerabilities are an additional set of concerns that must be addressed in a population-specific manner to ethically include or exclude participation. Precautions need to be taken to protect orphans and to address these vulnerabilities when developing protocols for health research in settings with large orphan populations. By carefully considering each issue in a population- and study-specific manner, researchers can make valuable contributions to the overall health and well-being of this uniquely vulnerable population.

Acknowledgments

This project was supported in part by an award to Dr. Braitstein from the Eunice Kennedy Shriver National Institute of Child Health & Human Development (R01HD060478), by an award to Dr. Vreeman from the National Institute for Mental Health (1K23MH087225), and by a grant to the Academic Model Providing Access to Healthcare (AMPATH) Partnership from the United States Agency for International Development. The content is solely the responsibility of the authors and does not necessarily represent the official views of any of these institutions.

Biographies

Rachel Thompson is a general pediatrician and fellow in Children’s Health Services Research at Indiana University School of Medicine. She is actively pursuing a career in health services research and has an interest in international research. She led the conception, design, drafting, and critical revision of the manuscript.

Eric Meslin is Director of the Indiana University Center for Bioethics; Associate Dean for Bioethics in the Indiana University School of Medicine; and Professor of Medicine, Medical and Molecular Genetics, Public Health and Philosophy. He co-directs the IU Center for Law, Ethics and Applied Research in Health Information (CLEAR), and the IU-Moi Academic Research Ethics Partnership, an innovative bioethics research training program in Eldoret, Kenya. He participated extensively in the development of this analysis, with significant contributions to the conception, design, writing, and revisions of the final manuscript.

Paula Braitstein is Associate Research Professor of Medicine at Indiana University School of Medicine, Co-Field Director for Research for AMPATH, and Co-Principal Investigator for the OSCAR research study in western Kenya. Her research expertise lies in evaluating care outcomes including for HIV-infected patients, orphans, separated children, and other vulnerable populations. She contributed to the data interpretation and to critical revision of the manuscript.

Winstone Nyandiko is Associate Professor and the Head of the Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences in Eldoret, Kenya, and Associate Program Manager for the AMPATH partnership. His expertise lies in evaluating the clinical management of HIV-exposed and HIV-infected children and implementation research in Kenya. He contributed to the data interpretation and critical revision of the manuscript.

Samuel Ayaya is Professor in the Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences in Eldoret, Kenya, and Co-Chair of the Kenya Pediatric Research Working Group. His research interests include children’s nutrition, growth, and development, the progression of HIV in children, and child abuse and neglect. He contributed to the data interpretation and critical revision of the manuscript.

Rachel Vreeman is Assistant Professor of Pediatrics at Indiana University School of Medicine and Co-Director for Pediatric Research for the Indiana University–Kenya Partnership and Academic Model Providing Access to Healthcare (AMPATH). She has extensive research experience in western Kenya that focuses on improving the provision of healthcare to children in resource-limited settings, with particular expertise in children’s adherence to HIV treatment. She participated extensively in the development of this analysis, with significant contributions to the conception, design, drafting, and critical revisions of the final manuscript.

Contributor Information

Rachel T. Thompson, Indiana University (USA)

Eric M. Meslin, Indiana University (USA)

Paula K. A. Braitstein, Indiana University (USA)

Winstone M. Nyandiko, Moi University (Kenya)

Samuel O. Ayaya, Moi University (Kenya)

Rachel C. Vreeman, Indiana University (USA)

• American Academy of Pediatrics. Guidelines for the ethical conduct of studies to evaluate drugs in pediatric populations (Committee on Drugs, American Academy of Pediatrics) Pediatrics. 1995; 95 (2):286–294. [ PubMed ] [ Google Scholar ]
• Beauchamp J. Principles of biomedical ethics. New York: Oxford University Press; 2009. [ Google Scholar ]
• Bhargava A. AIDS epidemic and the psychological well-being and school participation of Ethiopian orphans. Psychology, Health, and Medicine. 2005; 10 (3):263–275. [ Google Scholar ]
• Boris N, Thurman T, Snider L, Spencer E, Brown L. Infants and young children living in youth-headed households in Rwanda: Implications of emerging data. Infant Mental Health Journal. 2006; 27 (6):584–602. [ PubMed ] [ Google Scholar ]
• Case A, Paxson C, Ableidinger J. Orphans in Africa: Center for Health and Well-being, Research Program in Development Studies. Princeton, NJ: Princeton University; 2002. [ Google Scholar ]
• Chipfakacha V. Comparison of orphan coping mechanisms in the old (pre- colonial) and new (post-colonial) Shona (Zimbabwe), Ndebele (Zimbabwe, South Africa), Kalanga (Botswana, Zimbabwe), and Tswana (Botswana, South Africa) cultures. Botswana: World Health Organization; 2002. [ Google Scholar ]
• Deininger K, Garcia M, Subbarao K. AIDS-induced orphans as systemic shock Magnitude, impact and program interventions in Africa. World Development. 2003; 31 (7):1201–1220. [ Google Scholar ]
• Gilborn L, Apicella L, Brakarsh J, Dube L, Jemison K, Kluckow M, Smith T, Snider L. Orphans and vulnerable youth in Bulawayo, Zimbabwe: An exploratory study of psychological well-being and psychosocial support programs. New York: Population Council; 2006. [ Google Scholar ]
• Kenya National Bureau of Statistics. Kenya 2009 population and housing census highlights. 2010 Retrieved from http://www.knbs.or.ke/Census%20Results/KNBS%20Brochure.pdf .
• Kipnis K. Seven vulnerabilities in the pediatric research subject. Theoretical Medicine and Bioethics. 2003; 24 (2):107–120. [ PubMed ] [ Google Scholar ]
• Levine C, Faden R, Grady C, Hammerschmidt D, Eckenwiler L, Sugarman J, et al. The limitations of “vulnerability” as a protection for human research participants. American Journal of Bioethics. 2004; 4 (3):44–49. [ PubMed ] [ Google Scholar ]
• Muhwezi W, Muhangi D, Mugumya F. Intra-household differences in health seeking behavior for orphans and non-orphans in an NGO-supported and non-supported sub-county of Luwero, Uganda. African Health Sciences. 2009; 9 (2):109–117. [ PMC free article ] [ PubMed ] [ Google Scholar ]
• Naanyu V, Sidle J, Frankel RM, Ayuku D, Nyandiko WM, Inui TS. Rooting inquiry in tradition: The health baraza as a tool for social research in Kenya. Qualitative Health Research. 2011; 21 (1):14–26. [ PubMed ] [ Google Scholar ]
• Ntanda H, Olupot-Olupot P, Mugyenyi P, Kityo C, Lowes R, Cooper C, et al. Orphanhood predicts delayed access to care in Ugandan children. Pediatric Infectious Disease Journal. 2009; 28 (2):153–155. [ PubMed ] [ Google Scholar ]
• Nyambedha E. Ethical dilemmas of social science research on AIDS and orphanhood in Western Kenya. Social Science and Medicine. 2008; 67 (5):771–779. [ PubMed ] [ Google Scholar ]
• Nyandiko W, Ayaya S, Nabakwe E. Outcomes of HIV-infected orphaned and non-orphaned children on anti-retroviral therapy in Western Kenya. Journal of Acquired Immune Deficiency Syndrome. 2006; 43 (4):418–425. [ PubMed ] [ Google Scholar ]
• Pelton J, Forehand R. Orphans of the AIDS epidemic: An examination of clinical level problems of children. Journal of the American Academy of Child and Adolescent Psychiatry. 2005; 44 (6):585–591. [ PubMed ] [ Google Scholar ]
• Shivas T. Contextualizing the vulnerability standard. American Journal of Bioethics. 2004; 4 (3):84–86. [ PubMed ] [ Google Scholar ]
• Subbarao K, Coury D. Reaching out to Africa’s orphans: A framework for public action. Washington, DC: World Bank Publications; 2004. [ Google Scholar ]
• UNICEE. UNICEF Africa’s orphaned and vulnerable generations: Children affected by HIV/AIDS. 2006 Retrieved from http://www.unicef.org/publications/files/Africas_Orphaned_Generation_Executive_Summary_Eng.pdf .
• UNICEF. Orphans. 2009 Retrieved from http://www.unicef.org/media/media45279.html .
• US Department of Health and Human Services. The Belmont Report. 1979 Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html .
• US Department of Health and Human Services, (n.d.) US Department of Health and Human Services Code of Federal Regulations: Protection of human subjects. Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html .
• Vreeman R, Nyandiko WA, Walumbe E, Marrero D, Inui TS. Factors sustaining pediatric adherence to antiretroviral therapy in western Kenya. Qualitative Health Research. 2009; 19 (12):1716–1729. [ PubMed ] [ Google Scholar ]
• Vreeman R, Wiehe S, Ayaya S, Musick B, Nyandiko W. Association of antiretroviral and clinic adherence with orphan status among HIV-infected children in western Kenya. Journal of Acquired Immune Deficiency Syndromes. 2008; 49 (2):163–170. [ PubMed ] [ Google Scholar ]
• Wakhweya A. Health strategies to mitigate the impact of orphanhood; Presentation at the OVC Workshop, World Bank; Washington, DC. 2003. [ Google Scholar ]
• Young L, Ansell N. Young AIDS migrants in South Africa: Policy implications for empowering children. AIDS Care. 2003; 15 (3):337–345. [ PubMed ] [ Google Scholar ]

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Title: leave no context behind: efficient infinite context transformers with infini-attention.

Abstract: This work introduces an efficient method to scale Transformer-based Large Language Models (LLMs) to infinitely long inputs with bounded memory and computation. A key component in our proposed approach is a new attention technique dubbed Infini-attention. The Infini-attention incorporates a compressive memory into the vanilla attention mechanism and builds in both masked local attention and long-term linear attention mechanisms in a single Transformer block. We demonstrate the effectiveness of our approach on long-context language modeling benchmarks, 1M sequence length passkey context block retrieval and 500K length book summarization tasks with 1B and 8B LLMs. Our approach introduces minimal bounded memory parameters and enables fast streaming inference for LLMs.

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