An Exploration of Community-Based Services and Resources Available to Boost the Capabilities of AIDS-Orphaned Adolescents and Primary Caregivers to Achieve Emotional and Psychosocial Wellbeing ()
1. Introduction
Children and families affected by Acquired Immune Deficiency Syndrome (AIDS) often struggle to achieve their valuable goals due to experiences of stigma and discrimination, lack of socioeconomic support, and unattended grief among others. Studies that have focused on the psychological health of children and adults affected by the mentioned pandemic reveals that most of these individuals suffer anxiety, depression and posttraumatic stress to mention the few (Basaraba et al., 2023; Mohamud, Ahmed, Mohamud, & Dirie, 2023; Tang, Goldsamt, Yu, Zhao, & Wang, 2023). After a period of three decades, AIDS stigma still remains a problem in many communities, and one of the main stressors in the lives of people affected by the pandemic (Chama & Ramirez, 2015; Zhang, 2023; Zolfali Fam, Mo’aghar, & Samadnezhad Azar, 2021). Research worldwide shows that, in many occasions AIDS-affected families experience low or lack of socio-economic support from relatives, friends and local community services. It has been reported that, these families often live in poverty. Kuo, Fitzgerald, Operario and Casale (2012) conducted a cross-sectional survey in Umlazi township in South Africa, using a representative sample of primary caregivers of AIDS-orphaned children, children orphaned by other causes and nonorphaned children. The study investigated whether perceived social support varied among the mentioned caregivers. The findings indicated that caregivers of children orphaned due to AIDS reported lower levels of social support as compared to caregivers of children orphaned by other causes and nonorphaned children. Recently, a literature review on caregiving relationships of adolescents orphaned due to AIDS and primary caregivers revealed that these caregivers undergo financial hardships, food scarcity and psychosocial distress (Tsweleng, 2022). As Manderson, Block and Mkhwanazi (2016) puts it, “HIV and AIDS have impacted on social relations in many ways, eroding personal networks, contributing to household poverty, and rupturing intimate relations”, (p. 1). In the absence of relevant interventions the development of children and adolescents in these households face poor psychological outcomes. For example, Mason and Sultzman’ (2019) narrative review study shows that the stigma, discrimination and poor social support experienced by families affected by AIDS had direct effects on adolescent children’ school adjustment, self-esteem and optism among others. The challenges faced by children and caregivers affected by AIDS, as well as the fear of (or difficulties in) seeking help in terms of food, financial assistance, emotional and physical health care have added more weight to the burden of loss and unresolved grief in their lives (Mwangala et al., 2022; Ntuli, Mokgatle, & Madiba, 2020). The current study explores community-based services and resources available to assist AIDS-orphaned adolescents and primary caregivers to achieve emotional and psychosocial wellbeing.
2. Method
2.1. Study Setting and Participants
The study took place in Khayelitsha, one of the biggest townships in the City of Cape Town, situated in the Western Cape Province of South Africa. People residing in this township are mainly isiXhosa-speaking Africans from formerly cohesive communities which were removed, as a result of the Group Areas Act of 1950, from the city centre and more affluent suburbs (Stevens & Lockhat, 1997). Furthermore, Khayelitsha was found to have a “high prevalence of HIV infection, and has consequently become a centre for clinical research initiatives” in the Western Cape (MacGregor, 2009: p. 86). The high rate of HIV infections and AIDS-related deaths have been linked to high numbers of orphans and vulnerable children (OVC) (Burton, Giddy, & Stinson, 2015). In addition, Khayelitsha community is further characterised by poverty (Tsweleng & Roman, 2013), lack of resources, and high levels of public violence (Clark, 2012). The study involved 6 stakeholder participants who were recruited from various local non- governmental organisations (NGOs) and governmental departments. These purposefully selected stakeholders were in the age range of 27 - 67. 4 were females and 2 males. The stakeholders provided services within the Health, Social, Education, and Community and Youth Development Work sectors to meet the needs of orphans and vulnerable children and their primary caregivers.
2.2. Data Collection
Using an interview guide with open-ended questions, the researcher conducted in-depth face-to-face interviews with stakeholders―mostly at their offices. Few others stakeholders opted to meet the researcher at the university campus and were interviewed in an empty and quiet tutorial room. The collection of data took place between 6th of June to 15th of October, 2022. The interviews were conducted in English as per stakeholders’ preference. Interviews lasted between 35 minutes and 1 hour 10 minutes. All interviews were audio recorded and transcribed verbatim.
2.3. Data Interpretation and Analysis
The information was coded and adequately organised into main themes and sub-themes, and thematically examined.
3. Results
Results are categorised into the following three headlines themes: services for adolescents orphaned due to AIDS, services for primary caregivers, and the “missing” intervention. Under services for orphans the following subthemes are discussed: psychosocial support, educational support, and life skills. Under services for primary caregivers, parent-child communication stimulation workshops, Self-actualisation stimulation, and support groups subthemes are discussed. And in the “missing” intervention category, the following two subthemes are discussed: lack of clinical psychological component and the scarcity of primary caregiver-focused interventions.
3.1. Services for Adolescents Orphaned due to AIDS
3.1.1. Psychosocial Support
Research shows that, psychosocial support interventions can make meaningful difference in the wellbeing of families and individuals that are experiencing distress due to health, social or/and economic issues (Okonji, Mukumbang, Orth, Vickerman-Delport, & Van Wyk, 2020). Sitienei and Pillay (2019a)’s qualitative study provides profound evidence of how the psycho-educational and social interventions in a vulnerable low-income community improved AIDS orphaned adolescents’ quality of life. In the current findings, stakeholders also describe their psychosocial programmes and the positive impact the mentioned programmes have been making in Khayelitsha.
“The Homestead [an NGO offering psychosocial support] is the excellent one! They came here, took the kids, and became part of the kids, helping and teaching them. We could see the children that were going there, how it changed their lives, you know. The facilitator sis Khanyisa, she was dealing with these kids daily. She’s the one who will notice a kid [that is in need of specific assistance] and she will do a follow-up for us, visiting their homes and finding out what is the situation there.” (The Teacher-Stakeholder)
In the above-quoted extract the teacher explains and praises the work of the Homestead, an NGO sourced out to provide the psychosocial support services to the learners that are orphaned through HIV and AIDS and other vulnerable children at their primary school. The teacher state that the positive impact the mentioned programme made has been vividly visible.
“The child attended the counselling activities. The main thing was that he lost his mother. So it was eh… grieving sessions.” (The Social Auxiliary Worker-Stakeholder)
The Social Auxiliary Worker provides insight into the component of their psychosocial support programme which offers orphans grievance counselling after the parent’s death. This is a programme that is implemented by the local Prevention and Early Intervention Centre.
“Ahm… We have a beautiful programme that I must call personal development and leadership skills. We take kids out to the wilderness for what we call experiential learning. Ahm… one of the questions that we ask on the first day that kids arrive on the mountain is that; ‘what is it that you need to let go of so that you can be fully present on this whole programme that is here?’. Sometimes some of these kids will mention how they’ve lost their parents to HIV and AIDS. So, and then also you would ask these kids; ‘what type of support do you need?’.” (The Community and Youth Development Work Practitioner-Stakeholder)
In the above extract, we see how the programme allows orphans and vulnerable children a moment to share their individual difficult issues. This may be viewed as a group therapeutic activity that provides safe space to unwind―an activity that has been reported by many studies as effective (Straub et al., 2013)
“We… we also buy school uniform for them. Because the child that does not have school uniform can drop out of school because other children are laughing that―this child has broken shoes and whatsoever. So we work hand in hand with the schools. We have 3… 3 schools now. You see. You see.” (The Social Auxiliary Worker-Stakeholder)
Another way of protecting the orphan’s self-esteem and social wellbeing is well explained in an extract quoted above. This is indeed significant as during early adolescence, children’s self-esteem may be highly fragile and in need of support and protection. The extract below shows that it is not only NGOs that offers this kind of intervention, but some teachers too do often go extra mile to protect the child’s socio-emotional wellbeing. So that the child may focus on learning.
“Even the teachers here at school. The teachers when they see a child that needs something they pop out from their pockets and they buy shoes here, they buy clothes, everything!” (The Teacher-Stakeholder)
Furthermore, children are also served meals in most of the programmes. This is done to avoid engaging a hungry child in extramural activities after school.
“…there’s an organisation in my neighbourhood called Iyabonga. Ahm… they have like these community mothers, they have this programme of community mothers ah… a person who offers their own house, and they get trained on skills on how to deal with young people. For instance, they’ll be helping them out ahm… in the after-school programmes. They help with homeworks and other challenging issues. And also they provide meals, they provide meals like ahm… like nutritious meals like soup and bread. Just in case the kid doesn’t have something to eat after school…” (The Community and Youth Development Work Practitioner-Stakeholder)
The healthcare of orphans and primary caregivers is also reported to be well looked after.
“….we do have a… a [mobile] clinic that comes every Friday. So we encourage the children to go to that clinic, and we also encourage their primary caregivers.” (The Social Auxiliary Worker-Stakeholder)
As indicated, orphans and caregivers are also encouraged to use healthcare services to treat or to prevent illnesses, and also to seek healthcare related information whenever needed. It is worth noting that the mobile clinic is being brought to the people. This is an act of being considerate and mindful as opposed to having community members walking long distances to access healthcare facilities.
3.1.2. Educational Support
It has been stated that education empowers and liberates (Alan & Ertac, 2018). Below, stakeholders describes the educational activities they do with orphans to enable them to learn about issues that affects them. And moreover, to enable them to perform well cognitively and emotionally and achieve their goals.
“And from our side, in terms of supporting the school, we do have …eh… we assist them with school work, on Wednesdays. Wednesdays are for school work. As a result, it’s been 3 years now and children that are attending our programme we have a 100 percent pass rate. Because we are helping them. Yes.” (The Social Auxiliary Worker-Stakeholder)
“Let them read books. Let them go to the library―because a book can take you where you’ve never been. Tell them about programmes on TV that they can watch to boost their self-esteem.” (The Teacher-Stakeholder)
The public libraries have been repeatedly identified by most stakeholders as accessible resources that also contributes to the cognitive development of vulnerable children and adolescents. Stakeholders report that they often refer adolescents orphaned due to HIV and AIDS to the libraries as these are free to use and allows free usage of internet. The extract below further describes the availability and accessibility of the libraries within the community.
“We also have public libraries, we have in my neighbourhood we have about two public libraries, whereby these kids can use the internet for 45 minutes, for which provided by the city of Cape Town. Yeah the kid can use about 45 minutes for free internet, just to, you know… surf the net. And also there’s books that one can read. And there’s programmes that are being done there.” (The Community and Youth Development Work Practitioner-Stakeholder).
3.1.3. Life Skills
The development of life skills is highly vital during adolescent stage. Adolescence is a challenging period where children face physical, social, cognitive, and emotional changes as they transition to adulthood (Jones et al., 2014; Levine & Munsch, 2016). Acquiring life skills equips adolescents to achieve positive personal and social identification, and also enables them to positively decide how they want to best fit-in in this world (Erikson, 1968; Hermans et al., 2022). In an extract below, the stakeholder describes a practical activity through which orphans learn life skills.
“I also do gardening now. We do have a piece of land where we plant some vegetables because, at the end of the day they have to eat healthy. So I’m teaching them to do things on their own―because they own that garden you know.” (The Social Auxiliary Worker-Stakeholder)
The above-quoted extract shows that adolescents are taught how to work together, how to take responsibility and ownership, and how to invest in growing food for healthy eating lifestyle―among others. And all these are skills essential for the development of social, cognitive and psychological competence. In the extract below the stakeholder emphasise the importance of making adolescents aware of the right ways to achieving valuable goals as well as the wrong ways of possessing things, particularly material things such as cars and houses.
“Young children see gangsters as ahmm.. as successful people in the community because of the fact that they have money, they have cars, they have all that ahmm you know what I mean. And they [children] need to understand that yes they [gangsters] have those things, but they didn’t get it in a proper way―they’ve hurt people in the process of getting it.” (The NGO Manager-Stakeholder)
Indeed, the life skills programmes offered by schools and local NGOs do play a vital role in the development of adolescents as they teach valuable lessons of life. As Lee et al. (2017) and his associates affirms, these life skills programme enable children to dream well and to have a better sense of purpose (Lee, Park, Jang, & Park, 2017).
3.2. Services for Primary Caregivers
3.2.1. Parent-Child Communication Stimulation Workshops
“We run workshops about reading … or not really reading, but ahm… for them [grandmothers] to encourage communication with their grandchildren. So we give them books that don’t have words, just got pictures. And they can use the book for any level of any age group. But the book is purely to stimulate communication between the child and the grandparent―especially.”
“…Ahmm, yeah I mean if they can be talking about things like if you look at the book and you start talking about emotions and you say that child is happy, why do you think the child is happy? Ahmm… you know, and then you can take this conversation further: ‘are you happy? Why are you not happy? What can we do to make you happy?’. You know, so ahmm… it certainly strengthens that relationship between the grandmother and the grandfather and the children in the family.”
“And I think, for the child, once they know that they have a voice and that they are being heard, then they become more secure in their life at home.” (The NGO Manager-Stakeholder)
In the above extract the NGO Manager from Grandmothers Against Poverty & AIDS (GAPA) describes the programme they implement to stimulate communication between the orphans and primary caregivers in order to strengthen the orphan-caregiver relationship, and to enhance the child’s self-esteem and emotional wellbeing. This is an NGO that supports grandmothers who are providing caregiving to children and adolescents orphaned through HIV and AIDS.
3.2.2. Self-Actualisation Stimulation
Self-actualisation refers to the human need to explore, pursue and fulfil their individual and unique potential (Maslow, 1943). In this section, stakeholders describe the self-actualisation projects that their programmes offer to help primary caregivers to be less dependent on the organisation’s aid, but to also do profitable activities on their own and develop sense of self-satisfaction in the end.
“…we also ahmm… do sewing lessons for the grandmothers so that they can in turn go home and sew, and make things that they can sell in their communities or give it to us to sell on their behalf. So that they can have an additional income. We do educational programmes around gardening where we can teach them how to garden. And that they can do, the grannies can do but they can also get the grandchildren to do. So that everybody can benefit from the garden. And some of them come up with magnificent things that they have grown in the garden. Ahmm… we also get lots of donations of fabric for example and we give it to them. And sometimes is scrab fabrics, and they come and show us the most beautiful things that they’ve made with that.” (The NGO Manager-Stakeholder)
3.2.3. Support Groups
The grandmother caregivers at GAPA also attends support groups which they have formed through the facilitation of the stakeholders. These support groups are platforms for supporting and looking after each other. In these support groups grandmothers also enjoy the benefits of sharing their caregiving and other challenges and learning from each other. However, the most favourite sessions to many grandmothers are the “Khupha” sessions. “Khupha” is isiXhosa terminology which means “vent out”. The “Khupha” sessions are, as indicated, for venting out negative emotions and becoming enabled to find inner strength.
“…the grannies love it when we have what we call a ‘khupha’ session where they can just sit around and say; ‘these are my problems’. And then the other grannies can say but this is what I do to conquer that problem.” (The NGO Manager-Stakeholder)
The stakeholder also explained that another strategy the NGO use to reduce possibilities of anxiety and enhance state of psychosocial wellbeing is that of inviting other specialising NGOs to have educational sessions with the support groups on heart, stroke, sugar diabetes and high blood pressure diseases―among others. Support groups members are also taught how to avoid or to manage such diseases.
“So, yes we… and we work closely with the day hospital in Khayelitsha. Ahmm… and our plan is to eventually get all our grandmothers to be able to come here to get their medication. So that they don’t have to go and wait for the whole day just to get medication at the clinics. So ahmm… yeah, we tend to specialise in education. But there are other organisations around like the Heart and Stroke organisation they come to us on a monthly basis. They besides doing testing for the grannies they also teach them about healthy living.” (The NGO Manager-Stakeholder)
3.3. The “Missing” Intervention
3.3.1. Lack of Clinical Psychological Component
In the previous sections, stakeholders spoke sufficiently about the psychosocial support programmes and the positive impact these have been making. And impressively, they were also able to identify the “missing” clinical psychological component within their community programmes. This identification was gradually confirmed following the stakeholders’ long-term observation of externalised behaviour problems which were presented by both the orphans and primary caregivers.
“I think another big thing now in the neighbourhood is the boxing sport. And now these kids you’re taking these kids who lost their parents, and they’ve never went to a process whereby they can deal with the internal issues that they are currently facing. And now, you’re giving him the skill of boxing, and this kid is still sitting with this heavy burden that’s inside him or or her. And now you’re giving him the skill of boxing. And now these kids, instead of just talking about their issues, they they’re punching their issues out.” (The Community and Youth Development Work Practitioner-Stakeholder)
“And they [grandmother caregivers] didn’t even get counselling because when when we speak about their challenges I ask them ‘did you ever get counselling after your loss so that the children, you and the children together can be healed, did you ever get counselling? No, we didn’t get any counselling’. So there won’t be a hundred percent guidance there because they they never expected that they [grandchildren] will lose their parents at that age. Secondly, they never have somebody to have guts to come to them and say let’s gather and then we can we can speak about this. But only HIV people [HIV positive people] they used to gather and advise each other. But there’s something there they forgot, that the very first people should be the parents who lost their children, they have to be taken care of because they need to be healed so that they can be able to guide their grandchildren. That failed. I think the government failed to do that―because the government is supposed to come up with all those support interventions, that all the parents who lost their children we can gather, make groups, then we can talk about it. Then we get a professional person who can speak to them and teach them how to look after these children. Sometimes we can blame the children that, they now, they got no respect to them [grandmothers]― maybe, it’s because they never got any counselling. That’s why now they are drank, they are getting drugs and everything like that. It is that―the children, they needed a foundation after they lost their parents.” (The Fieldworker-Stakeholder)
During the interview, the teacher was asked if she knew of any specific psychological counselling programmes for adolescents orphaned due to HIV and AIDS and their primary caregivers within the community. Her response was as follows:
“Eish… I think that’s another one [component] that needs to happen because ahm… I don’t know of any around.” (The Teacher-Stakeholder)
According to the Community and Youth Development Work Practitioner, often a vulnerable child receives attention only when their acting out (due to an externalised issue) becomes a problem.
“I think the mental health issue is just a very big issue right now. Ahm… just a case not well acknowledged―because now for us [people who are providing support services to adolescents and families affected by AIDS], for the kids to be able to be acknowledged or to be seen that they are going through something, they need to do something really drastic, you know. It could be like like to smoke, smoke drugs. And then now―now, everybody gives everybody gives that kid some attention.” (The Community and Youth Development Work Practitioner-Stakeholder).
This therefore, may imply that the stakeholders tend to focus on the outcomes of the externalised problem than the externalised problem itself. This further highlights the lack of clinical intervention services in the community.
3.3.2. The Scarcity of Primary Caregiver-Focused Interventions
Most stakeholders reported that the support of AIDS-orphaned adolescents and primary caregivers within the community at large is often more focused on the orphans, and less on primary caregivers. The extracts below provide a clear highlight of the gap.
“Eh I don’t think they [primary caregivers] are trained. I don’t think they are trained. Because, I think, the time they lost their children, that was the time they needed somebody to train them on how to look after those children who doesn’t have parents.” (The Fieldworker-Stakeholder)
“But what I know is that ah… the government is supporting the children. Yes the government is. Because whoever who got no parents, they’re getting that that foster care [grant].” (The Fieldworker-Stakeholder)
“We’re always looking at the kids, but what about the caregivers? Who is taking care of them, so that they can have strength to carry on taking care of these kids? Remember we want to produce citizens that are gonna be positive about life. So even the caregivers they need to go and have fun, be taken out and just have a day of their own. Somebody who’s gonna take care of them physically just to to take their minds away from that―so that even the care is serviced, so that it can function. So you have to take them out. There should be a day where it says this is your day, where they go to massages, restaurants, wherever and like, have an exercise―whatever that can help to build them. So that when they go back to these kids, they don’t see it as a burden, they see it as something that they can carry with their lives. Financially, financially they should be taken care of. We know things are expensive. Kids eat. Kids get dressed. So SASSA [South African Social Security Agency] can also do something. Eh. Food parcels must be taken to their homes. They should lack nothing because we applaud them for taking this responsibility. Not everybody is capable of doing that. But if there are people that are opening their homes, their hearts and their life and say bring it [the responsibility], I will take care of this child because this child has lost the parents because of HIV and AIDS, ―they need the support.” (The Teacher-Stakeholder)
As indicated in the quoted extract, the mentioned primary caregivers indeed need to be taken care of and adequately supported for the enhancement of their overall wellbeing. This way, they would thus be enabled to provide a much- needed quality caregiving to these vulnerable orphan adolescents. SASSA is the South African government’s national agency that assists with the distribution of various social grants including (but not limited to) child support grants, disability grants, old-age pension funds and social relief of distress grants (Kinsman, 2019).
4. Discussion
As presented, stakeholders provided profound information regarding the services they render to adolescents orphaned due to HIV and AIDS and primary caregivers, and other resources that are available to benefit these vulnerable individuals. The information begin with the psychosocial support services the stakeholders provides to meet the needs of the orphans and primary caregivers. The teacher explain that the primary school does have the School-Based Support Team (SBST) committee. This is where all the psychosocial issues of the learners are adequately dealt with. The teacher further states that, the school also sourced out a fulltime psychosocial support programme from the local NGO which provides socio-emotional and educational support to vulnerable children, including adolescents orphaned by AIDS, on a daily basis. Whenever it is needed, the facilitator of the mentioned programme visits the homes of these children for a thorough assessment of their individual challenging issues. The teacher praise the programme for its outstanding impact, particularly on adolescents orphaned by AIDS. She explains that teachers have been highly satisfied with the difference the programme has made on the developmental outcomes of these vulnerable children. The teacher also emphasises that, other teachers at school do offer additional assistance whenever it is needed. For example, some teachers do buy school uniform for the orphans who are in high need of such. The Social Auxiliary Worker from the local Prevention and Early Intervention Centre explains that the centre offers psychosocial and cognitive support programmes to orphans and vulnerable children and adolescents from both the community and primary schools. This centre is owned by a local NGO, thus―its programmes are not for profit. She further explains that the centre provides bereavement counselling, assistance with homework and other educational projects, does home visits, buys school uniform based on special need, and also offers nutritional food to the children who attends the programme. Thus, the children’s overall wellbeing is taken care of. The Social Auxiliary Worker also explains that their programme has been producing 100% academic pass for a while. According to the information provided by both the teacher and the Social Auxiliary Worker, the psychosocial support offered to orphans and vulnerable children also protects these children’s self-esteem―which is of high importance. According to Banstola, Ogino and Inoue (2020), “self-esteem is an important aspect of mental health and it is believed to be one of the predictive factors for the psychological well-being of adolescents in their unique period of identity development” (p. 1). Indeed, many other previous studies have also found that, adequate psychosocial and educational support services offered to children and adolescents orphaned due to HIV and AIDS enabled them to fare well emotionally, socially, psychologically and academically (Muriuki, Andoh, Newth, Blackett-Dibinga, & Biti, 2016; Sitienei & Pillay, 2019b; Thomas, Ahmed, Tan, & Grigorenko, 2021; Visser, Zungu, & Ndala-Magoro, 2015). The Community and Youth Development Worker describes the psychosocial support programme offered through his sector as the one that provides group therapy activities for adolescents orphaned due to AIDS and other vulnerable children within the community. According to Bo et al.’s (2017) adolescents are often found to be more at ease in therapeutic group activities, than in individual-focused activities. Furthermore, the children are also served nutritious meals in most of the mentioned programmes. Kaur (2021) study shows that, a feeding programme enhance the child’s participation―both physically and cognitively. Stakeholders also provided information regarding life skills programmes they implemented. These included engaging orphans in a gardening project to teach them how to grow vegetables and eat healthily. The project also played a role of developing children’s responsibility-taking, teamwork, goal-setting and self-discipline skills. Kail, Pardasani and Chazin’ (2021) research have found that, involving orphans in a positive and self- rewarding programme, enhanced their self-esteem, sense of community, feelings of being trusted and sense of empowerment. A qualitative study that was conducted in western Kenya whereby AIDS-orphaned adolescents were involved in goat caretaking and ownership project also showed that, such an initiative had great impact on the orphans’ psychosocial wellbeing (Winsor & Skovdal, 2011). Furthermore, other services were aimed at supporting mainly the caregivers, but included orphans as required. For example, parent-child communication-stimulation workshops involved both parties. It was reported that, the purpose of these activities was to stimulate and strengthen communication between the orphans and primary caregivers who, as indicated, were mostly grandmothers. It was further stated that the activities tightened the bond between the mentioned individuals and strengthened their caregiving relationships. These findings are consistent with findings from “Let’s Talk”―a community-based orphan-primary caregiver intervention that was investigated by Thurman, Nice, Luckett and Visser (2018). Thurman and colleagues have also reported that, the intervention strengthened adolescent-caregiver communication and connection (Thurman, Nice, Luckett, & Visser, 2018). As indicated by Franz and McKinney (2018), positive parent-child relationship is indeed the main source of the child’s overall wellbeing and positive developmental outcomes. Furthermore, other activities focused on the primary caregiver’s wellbeing. For example, the grandmothers support groups were mentioned as activities where participants often found strength and comfort from each other, and in sharing the day-to-day challenges they faced in their care provision roles. It was reported that, often, the grannies walked away feeling less burdened from the support group sessions. And that being the case, the support group sessions may thus be viewed as therapeutic. Another indicated important aspect of support services for primary caregivers was the self-actualisation component. Stakeholders spoke about how they did not encourage caregivers to depend entirely on the organisation’s aid or support and therefore, they also engaged them in self-actualisation activities such as producing food for themselves through adequate maintenance of vegetable gardens and through sewing garments that they can sell for profit. Self-actualisation has often been reported as a protective factor that contributes tremendously on the psychosocial wellbeing of the person (Naderi, Akbari, Abbasi-Asl, & Amraee, 2021). People who successfully engage in self-actualisation activities on a regular basis, develop high sense of self-worth. Other previous studies on self-actualisation and profitable programmes for primary caregivers have also highlighted that, indeed, such programmes strengthened caregivers’ psychosocial and economic resilience (Cappiccie, Wanjiku, Mengo, 2017; Rosen et al., 2021). The mentioned programmes enable the caregivers to feed themselves and the orphans. Local hospitals, clinics and libraries were also mentioned as resources available to meet the needs of orphans and primary caregivers. Most of the stakeholders also mentioned a significant aspect of their programmes whereby health care services are brought down to the beneficiaries to avoid situations where important health care appointments are missed. The school invites nurses to assess the health of the learners and to provide health care, the Prevention and Early Intervention Centre has a mobile clinic that comes every Friday for orphans and vulnerable children to be tested and cared for healthwise, GAPA invites other organisations such as Heart and Stroke to perform necessary health tests on grandmother caregivers and also educate them about how to live healthy―in general, and also in the presence of certain chronic illnesses. All stakeholders indicated that wherever their services fall short, they refer their beneficiaries to relevant and accessible resources within the community for further assistance. And often, the referral system works effectively as other needs of orphans and primary caregivers are met through other available resources. Beidler, Razon, Lang and Fraze (2022) view referral platforms as tools that are capable to improve population health. Physical exercising has also been reported as another crucial component of the discussed interventions. Most orphans are reported to be playing football while the caregivers, engage in a regular physical exercising routine. Boxing was another sport that was reported as currently popular. The Community and Youth Development Worker explained that most orphans have been opting for this sport. However, in the process of partaking in this sport, the mentioned stakeholder identified an externalised behaviour that was presented during training sessions. He explained that some orphans punched the punching bag with such anger and physical aggression. And when he made a follow-up on the matter, he discovered that those orphans were indeed suffering from aggressive behaviour as they never received psychological counselling after the AIDS-resultant deaths of their parents. Other stakeholders have also been able to identify the orphans’ externalised behaviours through their (orphans) alcohol drinking and drugs taking tendencies. These have led stakeholders to conclude that, there was a missing intervention, the clinical psychological services that can adequately deal with the orphans and caregivers’ loss and grief, and prevent (or attend to) post-traumatic stress and unresolved grief disorders. Furthermore on the point of services, stakeholders have also identified that more interventions have been directed to orphans, and not so much on the side of primary caregivers. The only specific intervention reported to have been directed to the primary caregivers of children and adolescents orphaned due to HIV and AIDS, was the one offered by GAPA organisation for grandmothers. And although the said intervention has been missing the psychological counselling component which appeared to be needed, the organisation has reportedly been making a major impact on the lives of the grannies. The educational, health care, support groups (unwinding group sessions) and self-actualisation programmes offered―have been visibly effective. Sufficient evidence has been provided to show that the grandmothers have been able to cope with their individual challenges, through these programmes. However, the need for more caregiver-focused interventions remains high.
5. Study Limitations
The findings of this study should be interpreted with consideration of the following identified limitations in mind. First, the study did not include private sector organisations and practices that are offering similar services but for profit. It is expected that such organisations and practices would have more established clinical psychological component―which hardly exists within community public services. And in that case, the private sector would most probably perform better than community-based services that are also often deal with higher workloads. Second, the study did not include beneficiaries―the orphans and their primary caregivers. It would be interesting to hear their self-reported experiences. That said, it is recommended that future studies consider exploring the identified gaps. Findings thereof may possibly bring about comprehensiveness to the current study.
6. Conclusion
Majority of stakeholders provided psychosocial and educational services―mainly to orphans. These services included bereavement counselling, regular assistance with homework and other school projects, home visits, provision of school uniform as per need, group therapy, and life skills activities. As reported, the services seemed to have made a positive impact on the socio-emotional and cognitive functioning of the orphans. Some stakeholders’ services were aimed at providing relevant support to the primary caregivers―who were mostly grandmothers. The caregiver support services included support groups where grandmothers shared their challenges and learned from each other (through the facilitation of stakeholder), parent-child communication stimulation workshops, self-actualisation activities such as sewing and gardening. The self-actualisation activities enhanced caregivers’ self-confidence and promoted their sense of self-significance. It was reported that through good maintenance of vegetable gardens, caregivers were able to feed themselves and the orphans, and that through sewing they were able to create beautiful garments to sell and earn a much needed cash. It was stated that, these activities enabled primary caregivers to cope well with caregiving responsibilities and other challenges. Other resources that were reported to be accessible to orphans and primary caregivers to further boost their health and educational capabilities were clinics, hospitals and libraries. The referral system also appeared to have been contributing positively to the effectiveness of most of these community-based services. The system kept services and resources interconnected for successful execution of roles. However, although the mentioned services were commendable for promoting stronger wellbeing among adolescents orphaned due to AIDS and their primary caregivers, there has been an identification of cases where clinical psychological interventions were needed to adequately assist with issues related to unresolved grief and posttraumatic stress. The stakeholders reported that such interventions have been missing within community programmes. The absence of the mentioned interventions meant that, orphans and caregivers who presented externalised behaviours could not receive qualified support and that the much needed positive caregiving relationships could not be achieved. That said, there is a need for the government to initiate relevant clinical interventions that can provide opportunities for adolescent orphans and their caregivers to achieve optimal psychosocial functioning and overall wellbeing. Furthermore, caregiver-focused interventions need to be expanded as findings shows that, most of the programmes were aimed at working with orphans―and only few dealt with primary caregivers. There should be more programmes to reach and boost the emotional wellbeing, socioeconomic and caregiving capabilities of many more primary caregivers affected by AIDS, particularly in low-income communities.
Acknowledgements
The work reported herein was made possible through funding by the South African Medical Research Council through its Division of Research Capacity Development under the Bongani Mayosi National Health Scholars Programme from funding received from the Public Health Enhancement Fund/South African National Department of Health. The overall study was also partly funded by National Research Foundation and Research and Innovation Support and Advancement (NRF-RISA). The content hereof is the sole responsibility of the author and does not necessarily represent the official views of the SAMRC and NRF-RISA. The author would also like to extend gratitude to all community-based stakeholders who generously participated in this study. Special thanks to Grandmothers Against Poverty and AIDS (GAPA) organisation for hosting the current research. The author is deeply grateful.