Social Support Networks for Adolescents Orphaned by HIV: Definitions, Barriers, Challenges and Lessons from Uganda

Abstract

Social support is a key element to the health wellbeing of individuals, especially those experiencing major life transitions and crises. Prior evidence has demonstrated that orphaned adolescents are socially isolated with limited supportive networks. This study focused on how orphaned adolescents define social support, the nature of relationships with non-kin ties, barriers and challenges to seeking support. In-depth interviews from 38 orphaned adolescents (14–19 years) were analyzed using thematic analysis. Findings demonstrated that 1) orphaned adolescents define support in terms of “giving and receiving material and non-material assistance”, and “helping individuals overcome problems”, 2) relationships are initiated by family members, 3) economic hardships, stigma, and lack of trust deter adolescents from seeking support outside of the family unit. Study findings point to the need to integrate social support strengthening components within programming for orphaned adolescents living in HIV impacted communities.

Introduction

Globally, an estimated 15 million children below 18 years have lost one or both parents to an AIDS-related cause. Over 75% of these live in sub-Saharan Africa (SSA) (UNICEF, 2022). In Uganda, an estimated 1.2 million children were orphaned as a result of AIDS (UNICEF, 2016). In Uganda, orphans are either cared for by institutions (orphanages), or families – with a surviving parent or extended family members (Karimli, Ssewamala & Ismayilova, 2012; Ssewamala & Ismayilova 2009). Children who are not absorbed into these two care options end up living on their own –in child headed households or on the streets where they are exposed to sexual risk behaviors, increasing their risk of acquiring HIV (Lindblade et al., 2003; Meghdadpour et al., 2012). Taken together, without parental support and with extended families overwhelmed by the increasing number of orphans and poverty, supportive systems outside of the extended family unit –where they exist, may be a viable option to ensure children’s survival and wellbeing following parental death.

Social support has been documented as one of the key elements to the health wellbeing of individuals, especially those experiencing major life transitions and crises, such as orphanhood (Cooke et al., 1988; Reblin & Mchino, 2008). In HIV-impacted communities, poverty hinders the ability of extended family systems to provide sufficient support to orphans (Karimli et al., 2012; Kasedde et al., 2014; Kidman & Thurman, 2014). Thus, non-kin support networks – defined as relationship ties not based on blood and marriage (Ellwardt, et al., 2017; Nabunya, 2019), may be a viable option to ensure children’s survival and wellbeing. However, very few studies have focused on non-kin support networks (Nabunya et al, 2019). Moreover, the way orphaned adolescents define social support, as well as the challenges and barriers to seeking support outside of the extended family unit are rarely investigated. To address some of these gaps, this study focused on orphaned adolescents’ definitions of social support, the nature of relationships with supportive non-kin ties, barriers to seeking support outside of the extended family unit, and challenges associated with these relationships.

This study is guided by the social network theory, suggesting that individuals are embedded within informal social networks – defined as “units of social structure that includes persons or groups and ties of emotional support, which connects individuals or groups” (Cooke et al., 1988; Rodgers et al., 2019). Social networks (family members, relatives, friends, community members), consist of resources that individuals draw on to “get ahead” by increasing their access to information and financial resources to achieve upward mobility, or “get by” by providing tangible and material support to reduce economic hardships and buffer the stressors of everyday life or coping (Briggs, 1998). Therefore, it is critical to explore the social support networks for orphaned adolescents as they transition into young adulthood, as these have the potential to enhance resilience and promote future health behaviors.

Methods

Study participants

The sample for the qualitative study was drawn from a longitudinal randomized clinical trial for adolescents orphaned by AIDS in Uganda. The study sought to evaluate the efficacy and cost-effectiveness of a family-based economic empowerment for orphaned adolescents. The study was implemented in 4 political districts of Rakai, Masaka, Lwengo and Kalungu in Southern Uganda. The region has one of the highest HIV prevalence in Uganda (11.7%) compared to 5.4% of the national average (Uganda AIDS Commission, 2021). A total of 1,410 orphaned adolescents were identified and recruited from 48 geographically separate public primary schools with similar socioeconomic status of the students’ body. Adolescents were eligible to participate if they: 1) had lost one or both biological parents to HIV/AIDS; 2) were between 10–16 years at study initiation; 3) were living within a family and not in an institution; and 4) enrolled in primary 5 and 6 (an equivalent of 6^th or 7^th grades in the U.S.). Details of the larger study including participant recruitment and the intervention are provided elsewhere (Nabunya et al., 2019; Ssewamala et al., 2018).

Sample selection

The qualitative sample was selected following assessments at 12-months follow-up of the larger clinical trial. During these assessments, participants were asked to identify the non-kin ties available to them, using the name generator technique (Burt, 1984; Marsden, 1987). Specifically, participants were asked to name up to 5 individuals other than their caregiver and relatives that provided them with any kind of support. For each individual identified, additional questions related to the type of relationship, length of relationship, frequency of contact per month and kinds of support received were asked (Nabunya et al., 2019).

Utilizing purposive sampling (Patton, 2002), participants from both the control and treatment conditions of the clinical trial were selected based on types of non-kin ties identified. Four categories of participants were generated. Those who identified: 1) project staff as part of their non-kin ties, 2) both project staff and other non-kin ties, 3) other non-kin ties -other than project staff and 4) no non-kin ties at all. After generating a list of participants within the above categories, potential participants from each category were selected using a systematic random sampling technique. Research assistants contacted potential participants to obtain their availability and interest in participating in qualitative study. Adolescents who expressed interest met with research assistants to learn more about the study and to provide verbal consent. Potential participants who were unavailable (n=4) were replaced. Participant selection and data collection continued until data saturation was achieved. A total of 38 adolescents were interviewed. Sample characteristics are provided in Table 1.

Table 1:

Sample Characteristics

	Total (N=38)	Females (n=19)	Males (n=19)
Study condition
Control	19	11	8
Treatment	19	8	11
Participants’ age
14	7	4	3
15	13	6	7
16	10	5	5
17+	8	4	4
Non-kin ties identified
Project Staff only	14	6	8
Both Project Staff and Other non-kin ties	10	5	5
Other non-kin ties	9	4	5
No non-kin ties	5	4	1
School enrollment
In school	30	16	14
Out of school	8	3	5

Ethical Considerations

The study received approval from the Columbia University Institutional Review Board (IRB-AAA11950) and the Uganda National Council of Science and Technology (SS2586). The larger study is registered in the Clinical Trials database (NCT01447615). The qualitative component received approval from the University of Chicago SSA/Chapin Hall IRB (IRB15–0090). All interviewers completed good clinical practice (CGP) training and had to obtain the collaborative institutional training initiative (CITI) certificate before interacting with study participants. All participants’ caregivers provided voluntary written consent allowing their children to participate in the study. Each adolescent provided voluntary written assent to participate in the larger study. Additional verbal assent was obtained from adolescents to participate in in-depth interviews.

Data collection

In-depth interviews were conducted between June and August 2015. Data were collected via audio-recorded in-depth interviews conducted by two trained Ugandan interviewers. All study related materials, including the consent/assent forms and interview guide were translated into Luganda and then back translated into English to ensure accuracy. A semi-structured interview guide was developed and pretested prior to interviews. In-depth interviews were conducted in Luganda, the language widely spoken in the study area. Topics explored during interviews include: meaning of social support, sources and types of support received, nature of relationships with non-kin ties, reasons for lack of non-kin ties, and relationship challenges. Interviews were conducted at a location convenient to the participant (home or school), lasting between 20–35 minutes.

Data analysis procedures

Audio recordings were transcribed verbatim in Luganda and the transcripts were translated into English. Data transcripts were exported to MAXQDA12 software for qualitative analysis. Given the exploratory nature of the study, thematic analysis was utilized to analyze the data. A codebook was generated guided by the six steps described by Braun and Clarke (2006), i.e., getting familiar with the data, creating initial codes, looking for themes, reviewing and refining themes, defining and naming themes, and producing the report. Transcripts were coded by two research team members independently. Disagreements were resolved through discussions. To assess rigor, peer debriefing was used where the codes and corresponding excerpts were presented to a research team member not involved in data analysis to discuss plausibility of the themes and related findings. To preserve authenticity, all passages presented in the text are direct quotes from participants without alterations. In order to protect participants’ identities and privacy, the names were not reported.

Results

1. Sample Characteristics

Sample characteristics are presented in Table 1 below. A total of 38 participants between 14–19 years (females =19 and males =19) participated in in-depth interviews. Participants were selected based on types of non-kin ties identified, from both the treatment and control conditions of the larger clinical trial (n=19 participants per condition). At interview time, 30 participants were currently enrolled in school.

2. Adolescents’ understanding of social support and perceptions of supportive individuals

Social support defined as “giving and receiving both material and non-material assistance.”

Adolescents defined social support in terms of giving and receiving material assistance, such as basic needs, school needs and financial support during times of need, as illustrated below:

“The way I understand support is that, for example, as an orphaned child, if someone gives me something that I don’t have or something I need like paying for my school fees and taking care of all my basic needs, that’s support.”

[Female adolescent, 17, Other non-kin]

Another participant reported that:

“Support means helping someone with the things they can’t afford financially… [for example], someone giving us money to take care of our household needs especially when my mother has no money. I work but sometimes I don’t have enough money, someone would help me with money to take care of our household, or buying me something nice like a bicycle, a house and taking care of me and my household.”

[Male adolescent, 15, Other non-kin]

In addition, participants acknowledged that social support involves giving and receiving non-material support, such as emotional support. This kind of support involves the provision of encouragement, empathy, caring and acceptance to help adolescents build their self-esteem, provision of guidance on issues related to the importance of education and staying in school, as illustrated below:

“Advising me on how to behave, the benefits of staying in school, how to treat other people around me, how to overcome challenges in life, and training me in household chores so that I am able to do those things by myself in the future.”

[Female adolescent, 15, No non-kin]

Social support as “helping individuals overcome problems”

In addition to giving and receiving both material and non-material support, adolescents defined social support as helping individuals to overcome problems. For example: “Support means helping someone get out of a bad situation or a problem and helping them get into a better place and be like you.” [Female adolescent, 16, Project Staff].

In-depth interviews revealed a range of adolescents’ perceptions regarding whom they consider supportive. The most popular responses indicate that a supportive person should be “kindhearted,” “trustworthy,” “generous,” “provides support willingly without expectations, and able to maintain privacy of issues discussed or the support given.

For example:

“That person should be trustworthy and approachable anytime I have a problem. They should be able to follow-up and find out how I have used the things they gave me. If they gave me money, they should try to find out how I spent it. A supportive person should be able to give me financial advice, like if you get money, open up a bank account or buy an asset or buy something you don’t have. A supportive person should be able to tell me their principles on how they expect me to behave and use whatever they give me.”

[Female adolescent, 15, No non-kin]

Adolescents also talked about a supportive person as one who is able to maintain privacy of issues discussed or the support given, as illustrated below.

“Someone who does not talk about the things they have given me or tell other people about it, especially when we have a problem…someone who does not show off or brag about the things they have done for me.”

[Male adolescent, 18, Both Project Staff and Other non-kin].

Overall, the way adolescents understand and define social support, and their perceptions of who a supportive individual should be is indicative of their real-life experiences regarding their support networks. Indeed, given the poor communities in which these adolescents live, financial stability could be a major predictor for adolescents when choosing an individual to approach for support during times of need.

3. Nature of adolescents’ relationships with non-kin ties

To understand the nature of relationships between adolescents and non-kin ties, participants were asked to talk about how these relationships were initiated. In-depth interviews revealed that relationships between the majority of adolescents and non-kin ties developed mainly through introductions made by caregivers, prior relationships, childhood friendships, through mutual friends, and through introductions made by community members –for relationships with community-based organizations (CBOs) and non-governmental organizations (NGOs), as illustrated below:

“They came to our village looking for orphaned children and we got registered. They have been supporting me since I was in primary three. They were visiting each home and registering children who had lost one or both parents. They also registered non-orphans without support or living with their grandparents in big families. The chairman of the group introduced them…”

[Female adolescent, 17, Other non-kin].

Another participant talked about a prior relationship with the caregiver, as follows:

“She [family friend] went to school with my mother and they became friends. They were four friends. Before my mother died, she asked her [her friend] to take care of me and provide whatever I need including paying for my education. She is doing exactly what my mother asked her to do.”

[Female adolescent, 17, Other non-kin]

Others reported that relationships with non-kin ties developed as a result of their good behaviors and excellent performance in school:

“I am very attentive in class, so my teachers noticed that, and they started giving me extra support where I have difficulties. Sometimes I approach them asking for their help.”

[Female adolescent, 15, Both Project Staff and Other non-kin]

Another participant reported that:

“We are not relatives at all. I was very bright in school, but I didn’t have money for school fees. My parents died and the person I was staying with did not care about my education. My aunt [fictive kin] took me in to be part of her family. She has been very kind to me.”

[Male adolescent, 15, Both Project Staff and Other non-kin]

4. Barriers to seeking support from non-kin ties

In-depth interviews explored the reasons as to why some adolescents did not report any supportive non-kin ties. The reasons identified include feeling uncomfortable asking for support from other individuals, lack of support [approval] from the current guardian, stigma associated with seeking support, and the lack of trust in community members. For example, “The feeling that I will be perceived as a beggar, it is very hard, and I don’t like it.” [Female adolescent, 17, No non-kin].

Another participant talked about feeling uncomfortable asking for help from others:

“…I have lived with my mother most of the time. She is the only person who has been helping me. I am scared of asking for help from other people, including my neighbors. I am used to my mother, so I don’t feel comfortable asking for things from other people.”

[Female adolescent, 15, No non-kin]

As mentioned earlier, caregivers play an important role in the relationships their children build outside of the home. One participant reported that she is unable to have supportive non-kin relationships because the caregiver would not approve:

“Some people may be hesitant to help me because they are scared of my guardian. They may think that if they give me anything, she [my guardian] may question their intentions. She may think that they are questioning her ability to take care of me. For instance, when I try to talk to my father, she [my guardian] asks why I called him and what I talked to him about. I think that is the reason why most people are hesitant to help me.”

[Female adolescent, 15, No non-kin]

However, this participant also reported that the guardian would approve if support came from an organization other than an individual, indicating that the source of support is important to some caregivers in determining whether their children should be supported or not. In addition, participants also talked about the lack of trust in their communities, which makes it hard to have supportive relationships:

“No one [to support me] because everyone seems difficult. Sometimes I may share information with the people outside our home and then they end up telling my aunt exactly what I told them. Sometimes you may just want clarification…I don’t trust anybody in my community, and I don’t think anybody can help me.”

[Female adolescent,15, No non-kin]

5. Relationship challenges with kin and non-kin ties

Adolescents identified financial constraints as the major source of challenges affecting their relationships with supportive individuals (both kin and non-kin). As a result, supportive non-kin, especially those supporting adolescents in multiple households are forced to cut down on the amount of support they provide, as illustrated below:

“Some things have changed because sister [nun] supports other children from several other families. She no longer has enough money. She actually told me that she couldn’t afford to buy me books any longer. She will be paying my school fees and the school uniform only.”

[Female adolescent, 17, Other non-kin]

Another participant talked about financial difficulties in the following way:

“…I am not related to my “aunt” at all, but she takes good care of me. It is important that I don’t do anything to make her angry or jeopardize my relationship with her. I know that sometimes she struggles financially because I may ask her for something, and she tells me I don’t have that money; I have to pay school fees for other children. I give you only the things I can afford. Sometimes it hurts me especially when I see other students with the things I want or go tour places in the city without me.”

[Male adolescent, 15, Both Project Staff and Other non-kin]

In addition to financial struggles, one participant reported that the person supporting her sometimes acts cold and unfriendly especially when she does not perform well in school. As a result, support is not provided on time:

“She doesn’t like it when I get poor grades in school because she pays a lot of money for me to live in a boarding section…she gets angry and sometimes does not give me what I ask for or gives me part of what I asked for.”

[Female adolescent, 17, Other non-kin]

Financial difficulties are also associated with communication breakdown between adolescents and their caregivers and missing school, as illustrated below:

“It is a tough time now. My aunt does not have money. Sometimes she doesn’t pay school fees on time like she used to. Sometimes I don’t ask for what I need because I know she doesn’t have the money. Even when I am aware that she has some money, I am hesitant to ask because her reaction is always why is she asking for things, yet she knows no one is helping me financially? That’s why I don’t ask her.”

[Female adolescent, 15, No non-kin]

Other relationship challenges identified include performing too many household chores and family conflicts. To overcome or cope with some of these relationship challenges, especially financial difficulties, participants reported that they might sell off their personal property in order to raise money for school needs, ask other family members for support, borrow from friends, use personal funds-if available, and others work for money outside of the home, which requires missing school for a few days.

Discussion

This study focused on orphaned adolescents’ definitions of social support, the nature of relationships between adolescents and non-kin ties, barriers to seeking support outside of the extended family unit, as well as challenges associated with both kin and non-kin relationships. Study findings demonstrate the following. The way adolescents define social support point to the need for coping support. More specifically, adolescents report receiving material, financial and non-material support, including emotional and in-kind support intended to buffer the day-to-day stressors, with few opportunities to get a head. This finding is consistent with previous studies documenting that people living in poverty (including study participants), are embedded in homogenous social networks that are poor, limiting the flow of information and opportunities for upward mobility (McPherson et al., 2001; Swartz, 2009).

Seeking support is associated with interpersonal trust, and in turn, the likelihood of sharing personal experiences (Mortenson, 2009). Adolescents value the most trustable and reliable person when seeking for help (Barker, et al., 2005; Camara et al., 2014). Indeed, adolescents in the study identified a supportive person as someone who is kindhearted, trustworthy and provides support willingly without expectations. Thus, as long as orphaned adolescents feel that members in the community cannot be trusted, they will be less likely to pursue social relationships or seek support outside the family unit, even during times of need. The lack of trust, therefore, potentially explains why some adolescents identified no supportive non-kin at all. Trust and confidentiality concerns have been reported in studies that investigated perceived barriers to mental health help-seeking among young people (Radez et al., 2021).

In addition, caregivers serve as a bridge between the family and the social world of their children (Ladd & Pettit, 2002). Study findings demonstrate that caregivers play an important role in influencing the relationships that orphaned children under their caregivers engage in. For example, a number of adolescents’ relationships with non-kin ties developed as a result of prior relationships with the caregiver and/or introductions made by caregivers or other family members. Moreover, some caregivers directly controlled who their children interacted with, and some did not approve relationships their children had with particular individuals. This is consistent with previous literature documenting that parents not only introduce their children to social relationships, but also control and influence various aspects of their social lives (Ladd et al., 1992).

Adolescents identified several factors contributing to the lack of supportive non-kin ties, including feeling uncomfortable asking for help outside of the extended family unit, stigma attached to seeking support, confidentiality/privacy concerns, community mistrust, and lack of approval from current caregiver. These findings are similar to barriers to help-seeking among young people (Radez et al., 2021). Within the study context however, cultural norms emphasize individual self-reliance, as such, seeking support outside of the family unit is often considered a sign of weakness or not being able to take care of one’s family. In addition, the lack of caregiver approval may stem from mistrust regarding the intentions of “outsiders”. However, it may also be a way to protect orphaned adolescents against stigmatized support. Indeed, one participant reported that the caregiver would approve of the relationship if support came from an organization rather than individuals in the community. While such preferences may be protective, they may also hinder the development of important family and community-based safety nets in the absence of such organizations. Indeed, over reliance on this kind of support may leave orphaned adolescents and their families more vulnerable to agency policies, budget cuts and social isolation (Dominguez & Watkins, 2003).

Finally, although most research in the field of social support has focused on its positive nature, a few studies have investigated the negative aspects and costs associated with social relationships, including financial constraints, time demands and negative interactions (Lincoln, 2000). Negative interactions may include discouraging expression of feelings, making critical remarks, invading one’s privacy, interfering in one’s affairs and failing to provide the promised support, which may increase psychological distress to the individual (Lincoln, 2000). Indeed, study participants reported financial constraints, untimely support, breakdown in communication, caregivers acting cold and unfriendly, as well as increase in household responsibilities. Given these reports, it is possible that orphaned children may be at a higher risk of experiencing negative support, which may hinder health seeking behaviors.

A few limitations worth noting. First, findings are limited only to orphaned adolescents living within a family system in rural communities in Uganda. Findings should not be generalized to non-orphans, including those not orphaned by HIV/AIDS, as well as those in institutional-based care. Second, the conceptualization of “non kin” in the Uganda culture may be limiting given that fictive kin may be considered family. As such, the support they provide may have gone unidentified. Third, findings are limited by the lack of depth in participants’ responses to facilitate a true thematic analysis. Specifically, while they possess a wealth of information, interviewing them is problematic due to challenges related to cognitive and social development and unequal power relationships (Weber, Miracle & Skehan, 1994).

Even with a forementioned limitations, study findings contribute to the limited literature focused on the supportive systems of orphaned children and adolescents living in HIV-impacted communities. In addition, findings address the gap that large clinical trials, such as the one from with participants in the qualitative study were drawn, that tend to be limited in their explanatory power to certain intervention outcomes (Grypdonck, 2006; Turner et al., 2019).

Implications and Conclusion

Given the well-documented relationship between supportive relationships and individual health outcomes, study findings demonstrate the need to integrate social support strengthening components within in the care and support programs for orphans and vulnerable adolescents living in HIV impacted communities. While families caring for orphans need help in acquiring economic resources, the value of strengthening relationships between families and the larger community should not be neglected. Finally, findings may inform future design of health trials, especially those involving social support components, to increase trial participation, uptake and engagement. Future research should focus on how non-kin supportive relationships impact the health outcomes of orphaned adolescents, including psychosocial functioning, mental health functioning, as well as health seeking behaviors. In addition, studies should engage caregivers of orphaned adolescents to ascertain how relationships with non-kin could be strengthened.

Brief Biographical Statement

Proscovia Nabunya is an Assistant Professor at the Brown School at Washington University in St. Louis. Her global research focus on HIV-stigma reduction interventions, mental health, and family and community-based support systems as protective factors for the development and wellbeing of children and youth in low resource settings, specifically, in sub-Saharan Africa.

Data Availability Statement

The datasets analyzed during the current study are available from the corresponding author on reasonable request.