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CYC-Online Issue 126 AUGUST 2009 / BACK
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Working with youth & families affected/infected by HIV/AIDS within the South African reality

Lesiba Molepo

SAPA (2003:27) stated that “one of the greatest threats to the realization of child rights in South Africa and in sub-Saharan Africa is the HIV/Aids pandemic ... the illness and death of adults as a result of HIV/Aids has a profound impact on the survival, development and protection of children in South Africa”. According to this report, all the sectors, including the social development sector under which child and youth care falls, will be challenged to review their strategies and approaches in order to deal with the impact of this pandemic.

HIV/Aids is still attached with a huge stigma in South Africa. Treatment Action Campaign has stated that “thus far, the openness and the reduction of stigma of HIV/Aids has been disproportionately carried by poor, marginalized and vulnerable communities” (SABC News, 3 May 2004). Working with HIV/Aids infected/affected people is an emotionally draining task for all, trained and untrained. It requires the worker to be emotionally and mentally prepared for this task.

The number of young persons that need care already far outweighs the number of people trained to work with them. SAPA (2003) stated that in 2002 alone, about 150, 000 children lost amother to Aids. Although these statistics are frightening, Allsopp and Thumbadoo (2002) warned that “the statistics at our disposal don’t in any way capture the bewilderment, heartache, pain and trauma experienced by South Africans as they face the impact of Aids in the faces of those they love, in the face of those they care for and in their own mirrors. These statistics don’t capture the loneliness, fear, rejection, pain and unimagined grief that the illness raises”.

Anglin (2002) has suggested that programmes should seek to provide “short, sharp” interventions into the lives of the client families in order to defuse a problem, often a crisis, without having to remove children from their homes. The dilemma though, is that households that previously supported one another, through the sharing of resources and responsibility for care, are now unable to do so as household members fall ill or die as a result of HIV/Aids (Sapa, 2003). Formal and informal support systems will have to be put into place to try and address the needs of the young persons. As Nightingale (2003) said “I feel the need to optimize the presence of whatever adults there are”.

It is against these hardships brought about by the HIV/Aids pandemic that I will explore some of the characteristics of a contemporary child and youth care approach as identified by Garfat (2004). I would like to start a journey, my personal journey, of exploring the applicability of these approaches within the family and Aids context of South Africa.

Engagement and connection as a foundation
The skills of connecting and engaging sound simple but not everybody can easily connect. Ward and McMahon (1998) realized this when they mentioned that what many residential child care teams seem to have found difficult is engagement with families of the young people. They further mentioned that: “staff may identify more with the children than with their families “perhaps they feel especially protective of the children, sometimes for reasons which may connect with their own childhood experiences and their motivation for doing this work.” (p.60)

In the South African context, factors such as gender, race, age, education, politics, religion, ethnic backgrounds can still contribute to making connecting difficult. When people meet for the first time, they are likely to feel anxious and therefore be careful or even resistant. Brendtro and Du Toit (2003) suggest that we are disposed to respond positively to those who treat us well and negatively to others who show hostility. The child and youth care worker, therefore, needs to be perceived as someone who would treat the young person and family members positively and to spend considerable time in this phase, connecting, in order to lay a solid foundation for future work. As Ward and McMahon (1998:26) advised we need to be genuine and authentic in our work and yet use certain professional skills and concepts which might otherwise be seen as “artificial”.

The child and youth care worker needs to explore the many avenues available to connect with the youth and family. One could, for example, use some frequently sensitive issue such as gender to connect. While this issue may not necessarily affect the young person and the family directly it may serve as a stepping stone to dealing with the real issues, their issues. In fact, if the child and youth care worker can connect at this, an emotionally sensitive level, s/he will find it easier to connect with other issues. I kept referring to sensitive issues because in South Africa, HIV/Aids is still regarded as a sensitive issue. Some people do not feel comfortable even to talk about it, let alone discuss their personal status. When connecting the child and youth care worker should not rush but move at the young person's pace so that the worker, the young person and the family reach a point of “we–-ness, a sense of “being in this together” not a time when I am me and you are you, but rather a time when we are “us”.

Intentionality of action
Before the child and youth care worker enters into the young person's family, s/he needs to ask him/herself the question “what am I going to do today?”

S/he needs to act with intentionality (Garfat, 2004). This does not mean over-planning and being rigid. It means being conscious about the reason for every interaction, no matter how insignificant it might seem. Ward and McMahon (1998:68) saw the importance of planning ahead when they said that “It is important that staff have some way of planning for and thinking about this aspect of their work, rather than leaving it entirely to chance or to their own intuition.” Lee Combrinck-Graham (1995) noted that whether the activity is structured or not, the conversation during each session must be focused on the specific theme(s) chosen by the therapist with the young person. This suggests that even conversations between the young person and the worker should be linked with the reasons why the child and youth care worker is in the life space of the young person. Acting with intentionality will also help the worker track progress made and assist in evaluating what has been achieved at the end of every interaction.

As McElwee (2004, n.p.) highlighted in discussing intentionality in daily interactions with children and youth: “... as I reflected on our conversation later in the day, I thought about the importance of planning in residential child care. I reflected on how much the children we work with believe in us ...” It is this level of intensive planning that is required when dealing with young persons and their families. Other approaches like “hanging-out” could not be used to justify lack of planning, after all that is not what they are meant for. There isn’t any moment to waste when dealing with people in pain. Given the time constraints, every moment needs to be thoroughly

Use of daily life events as a focus for intervention
It is through engagement and intentionality that the child and youth care worker can turn every event into a useful moment and so the child and youth care worker needs to be aware of the opportunities that come with everyday events. Beker and Eisikovits (1991) indicated that the worker needs to get to know people’s way of functioning, interests, friends, support structure, and the things that hold them back. In order to do so, s/he must be where the youngsters are. Being in their life space will give the child and youth care worker the opportunity to use their daily experiences within their own environment to face their own issues.

In some cases, when a stranger simply comes to visit with a family, it is likely that people in the neighbourhood will become curious and ask questions. When the child and youth care worker moves into the young person's life space, it is likely to be less threatening because people in the neighbourhood see nothing other than the youth and family going through their normal life with the child and youth care worker. It is through daily activities that the worker may access valuable information that will help him/her work effectively with the young persons. More people are likely to disclose their HIV/Aids status and other social issues during daily interactions.

In a community where people are dying and buried on a weekly basis, the child and youth care worker needs to use these kinds of moments to help the young person come into terms with their realities. S/he could use these moments to prepare the young person for death in a case where they are living with a terminally ill person, as well as for healing purposes in a case where they have already lost family members as a result of HIV/Aids. Attending a funeral of someone in the community, for example, assures the young person that the worker will be there should/when the family member passes away. These moments provide the opportunity to explore the young person's desires as well as fears and also give the worker an opportunity to familiarize him/herself with cultural practices which s/he can exploit for their potential restorative and healing value for the young people (Allsopp & Thumbadoo, 2002). Through daily events the child and youth worker could be able to identify support structures for young person and the family.

The presence of the child and youth care worker in the family might be treatment in itself for as Durrant (1993) noted, the day to day incidents provide the basic raw material for the treatment. The child and youth care worker will need to be on the look out for more immediate and more “real” incidents that could be used than those things that might occur in more formal therapy sessions. If people can notice those times things happen differently “more successfully “then they have something that might be built upon (Durrant, 1993). Just because the worker has moved into the family to intervene with HIV/Aids issues, for example, does not mean that the worker has to ignore other positive, health enhancing activities taking place within the family. Helping the family members concentrate on what they are already doing well may help them take the focus away from their HIV/Aids situation.

Most people find it easier to build on something they are already doing to start out something new. The child and youth care worker needs to be observant of the daily events, including the coping strategies of the young persons and their families, to see how they could be used to address their situation.

Although the use of daily life events is encouraged as a child and youth care approach, it should not be used to avoid dealing with the real issues. When the child and youth care worker moves into a family, s/he moves with the mandate to address painful issues. S/he is therefore expected to do other things with this mandate at the background of his/her mind all the times. Anglin (2002:108) warns that “the many activities of daily life seemed to disguise and cover over this ever-present and deep-seated pain to the point where one wondered if this “cover-up” was an intentional strategy of avoidance”. The child and youth care worker needs to make use of what the young person and the family is already doing to help them heal not to avoid dealing with their pain.

Just because the worker will be dealing with HIV/ Aids does not mean that everything has to always be serious. The HIV/Aids infected/affected people need fun too. Maier (1987) noted that while life proceeds smoothly, child and youth care workers may join the children's and youth’s activities to share their lives, their fun, and their joint opportunities to widen their experience.
It is in this context of having fun that the young person will feel less overwhelmed. This will also allow the young person to open up to the child and youth care worker in the time of distress.

The child and youth care worker also needs to be sensitive to the young person or other family member’s private space and show respect to their desire to have some moments alone or with family and friends. While respecting this private space and time, the child and youth care worker needs to assure the young person of his/her availability especially at the time of need. Nightingale (2003) mentioned that she is “being seen as an available and responsive adult and many children are looking for just that in their lives. They like to be noticed and greeted, they like to show somebody what they have done in school, they like someone to watch their game or listen to their song”. Being available creates the opportunity to take advantage of daily life events
as they occur.

Hanging out with people
Garfat (1999) mentioned that we tend to get “task orientated"; that we always have to be doing something with a specific and concrete objective to feel that our time is used valuably. This kind of approach takes away creativity and opportunities that might come with a new day. Talking about serious issues all the time must bring stress to the young person and the family. Hence, hanging out is a useful approach when dealing with pain. Garfat (1999), also stated that “hanging out is one of the most important – and sometimes most difficult – activities. Important, because it is one of the ways in which we connect with the young persons to a shared realm of experiencing with them, and let them know that we can be there, with them”. The benefits that come with hanging out include: (a) for youth to experience you as a person, not just as a worker, (b) for the worker to experience youth as the person, “) to model appropriate boundaries, (d) to use real daily life events as they arise, (e) to explore the world of these youth, (f), to be there, to connect and come to the understanding what is important. (Garfat, 1999, n.p.)

People infected/affected by HIV/Aids need to be experienced as people. They have their own strengths and weaknesses, dreams and desires, hopes and wishes. All these can be experienced and discovered when the child and youth care worker is prepared to hang out with them. At times, the young person or parent might have the need to share nothing related to his/her HIV/AIDS situation. In fact, some people are likely to be overwhelmed by having to deal with their issues every time the child and youth care worker is around. Hanging-out is a less threatening way of interacting. The worker will gain insight into the young person and the family’s world and during these moments the young person and other family members get to share valuable information that might not be regarded as valuable if people had to interact in formally, planned sessions. The young person and family will share their fears, desires and dreams. Hanging-out lays the foundation for hanging-in.

Doing with, not to, or for
As a result of living with and caring for sick adults, young persons are going to be burdened with tasks that are normally adults” tasks. They are going to be stretched physically, socially and emotionally. They are going to be deprived of the benefits of being children and may not experience playing and being with peers. “Doing for” may suggest promoting dependency, inadequacy and taking away responsibility from young people “and indeed, if not used consciously, it does. In child and youth care the main focus is the promotion of development together; of doing things with other, not “for” other. However, in the face of HIV/Aids, where people’s hopes are increasingly fading everyday, we should let our young persons and families experience what South Africans are teaching the world, Ubuntu. Ubuntu does not promote taking away one’s sense of worthiness. It promotes giving one the dignity one deserves, including receiving nurturing when one needs it. There are times when I believe we have to “do for”. We, as child and youth care workers can do for the young persons and their families without suggesting that they are inadequate. In the context of HIV/Aids pandemic, child and youth care workers can “do for” with the intention of alleviating stress.

Also, in some African cultures, there are times when some people are not allowed to do certain things for themselves. For example, when someone is seriously ill the community members are expected to do certain things for that family while the family members are being with the ill person or at least being in touch with their own emotions that were brought about by the illness.

The expectation is that all those who come to support the family should divide the responsibilities and duties among themselves to ensure that all that needs to be done is taken care of. The child and youth care worker needs to be aware and show sensitivity to this cultural practice. Once aware, the child and youth care worker will then need to feel comfortable and join the community in “doing for”. “Doing for” is not a generally used approach but can be used effectively to enhance relationships as well as bring about a sense of being cared for, and must be considered in the cultural context. For example, when my own father passed away I relied on my community and my neighbours. Even today I do not know who bought the cow that was slaughtered. I do not know who went to buy it. I did not have to worry about how and when it should be slaughtered. I just knew that it would be taken care of. In fact, I was not supposed to be anywhere near. I can say during that moment of grief, I was entitled to that kind of treatment where things were being done for me.

The child and youth care worker will need to know the family members well so that s/he can know when it is appropriate to “do for” them. In some communities, community members might even question the motives of the worker for being in the family if s/he does not get involved in “doing for” the young person during those moments. Allsopp and Thumbadoo (2002) highlighted some of the burdens carried by the young persons in the face of HIV/AIDS. They quoted one of the affected young person, Nywayo saying: “I am very worried because I can’t understand why, being so young, I have to carry the burden of elders. If there is no food at home these children look to me to do something” (The Cape Times, 2001).

Child and youth care workers need to be comfortable to do for these children those things that their parents would normally do for them. Not doing so can only serve as a reminder that their parents are ill or dead. This view is supported by Maier (1987:21) when he said “we need to be mindful that at the beginning of new experiences or at a point of crisis, a child's dependence upon physical support and nurturance is primary”.

In the light of the above challenges, how can we not at least “do for” under these circumstances? Could the child and youth care workers” role be to facilitate those who can do for? Are we perhaps afraid that being seen doing certain things for the young persons could be used to undermine our profession? Did we move into the families to maintain our professional status or to meet their needs? If our role is to facilitate those who can do for, who is the real “carer” in the young person's opinion? Does it really matter if the professional child and youth care worker is not perceived as the real carer?

Maier (1987) stated that care has not only to be delivered but to be experienced as caring and that effective care work necessitates a programme which provides countless opportunities and resources for rendering concrete care giving. He acknowledges that child care workers are constantly faced with this challenge “to provide children or youth with the experience of being cared for in the course of the daily activities “in the face of limited time, energy, and skills. We need to make use of what is already available to provide the necessary care that is needed.

Being in relationship
The foundation for any effective intervention lies in the relationship between the child care practitioner and the young person. As Beker (CYC-Net Discussion List) mentioned “it is precisely in the area of relationships with others that many of the youngsters with whom we work have been most deprived; therefore, they need to experience real, wholesome, deep relationships if they are to be able to learn about relationships and how to relate positively to other”. Krueger (CYC-Net Discussion List) emphasized the importance of relationship by equating child and youth care work with the relationship itself: “child and youth care work is a relationship”. Garfat supported this when he mentioned that “effective youth care practice is not just about “having relationships” but about “being in relationship” with youth; about entering into relationship, not just getting along with someone else but about being in the getting along” (CYC-Net Discussion List).

In the context of families where there are multiple deaths as a result of AIDS, the child and youth care worker needs to be aware that the relationship required might be a long lasting one. The child and youth care worker needs to be aware that s/he is getting into a relationship with someone whose loved ones might pass away leaving the young person with nobody except the child and youth care worker, who might then become the only person the child is “related to”. The question is whether the child and youth care worker will be able to maintain this level of emotional demand “bearing in mind that the worker will not only be working with one client but probably a number of them. Emotional boundaries needs to be kept in mind at all times for the child and youth care worker also needs to be aware that s/he may be in a relationship with someone who might pass away.

In working in the family, the child and youth care worker also needs to know when to be in a relationship. For in some cultures it would be inappropriate to be seen as being in a relationship with certain people, especially young children. Also, in some African cultures it is inappropriate for young people to be seen around adults during the time of grief when adults and young people do things separately. The worker needs to be able to know when to step back, especially in the presence of other family members, without giving the young person the impression that s/he is being abandoned. S/he also needs to guard against being seen as someone who is competing with other family members. Instead, the child and youth care worker needs to use his/her relationship to help family members relate together and to allow other family members to establish or re-establish a relationship with the young person.

Attention to meaning-making
Although I had been hearing about HIV/Aids for many years, I only came into contact with an openly self-confessed HIV/Aids infected person who was ill in 1999. Since then, my perceptions about HIV/Aids changed and I started seeing it as a reality in our country. I started to familiarize myself with the literature pertaining to HIV/Aids. Now, I do come across people who are sick, some with the symptoms of HIV/Aids. Some of these people tell different stories for their illness, the common one among Africans being that they are bewitched. One may conclude that some people just deny the fact that they are HIV/Aids infected, but the reality is that some people, even if they know that they are HIV positive, they may still genuinely link their status with witchcraft. When asked about the cause of their illnesses, they will tell you that the medical professionals say they are HIV positive but they themselves believe something else – something different. This is how they make meaning of their situation.

Ward and McMahon (1998) noted that each family has some sense of collective “inner world”: a common view of itself as a family with customs, habits and sayings almost like a small tribe with all the accompanying assumptions and world views. The challenge is whether the child and youth care worker will be prepared to accept these ways of making meaning, these interpretations that are different than the worker’s own. If s/he fails to go along with what the infected/affected people say, s/he will lose them and therefore chances that s/he will intervene effectively will be slim.

Only when we know how the young person and the family makes meaning can we really invite the young person and the family concerned to think about an event and its meaning (Durrant, 1993). As Ward and McMahon (1998) indicated, it is clearly the inner world that we need to reach if we are to communicate with unhappy children about whatever is troubling them.

Self awareness and the use of self
Anglin (2002) warned that child care workers should not allow their own experiences of pain to slide beneath their ongoing awareness. When I met my first HIV/Aids patient my perceptions changed. I started seeing HIV/Aids as a reality. The fact of the matter is that HIV/Aids had always been a reality but not to me. Now I treat it as a part of my reality. I treat it so because I have seen people die as a result of HIV/Aids. The question is had I not come across these people, would I be so serious about HIV/Aids issues?

When child and youth care workers move into this type of work, which is highly emotional, they need to do so with the full understanding that their self will be playing a significant role. Some of the pain they experience will be their own pain. Some of the sufferings they will witness will be their own suffering. Some of the wishes they hear will be their own wishes. Some of the frustrations they experience will be their own. Coolen (2002) noted that “no matter how “good” our intentions are, no matter how much we love, care and do, if we are not aware of our own needs we cannot be present or help others meet their needs”. It is impossible not to bring the self into this area of work. We need to constantly remind ourselves that working with troubled youngsters will bring us face to face with issues of our own, some of which we have not resolved.

In discussing “doing with, not for, or to” earlier, I strongly argued for the “doing for”. I have no doubt that my argument was influenced by my own experiences of things being done for me. Because these were positive experiences, I thought that others would experience them as such. I was fully aware of the role played by my self in the discussion. There is nothing wrong in bringing the self into a situation. What is important is that the child and youth care worker to be aware of self. Attempts to deny that self is playing a role can only disadvantage the young person and family. Ricks (2001) said, without the self there is no other. The “professional use of self” involves using one’s personal resources, including using one’s emotions as well as certain skills and techniques, to achieve real communication. This is what is called “being real with people” (Ward and McMahon, 1998:26)

Individuality of approach
Human beings are unique creatures. They have unique needs and unique ways of meeting those needs. When they are under stress, they have individual ways of dealing with their stresses. Although the child and youth care worker will be moving into the family with skills and knowledge, s/he needs to be willing to adapt these skills to suit the individual young person and the family. Failure to adapt any knowledge to suit the individual will result in the young person or family thinking that the worker does not understand him/her and even questioning the worker’s motives.

Some young persons, for example, will prefer the child and youth care worker to hang-in during the good and the bad times. Others might want the worker to hang-in only during the bad times. The child and youth care worker has to be guided by the individual preferences of the young persons for, as Maier (2004) noted, there are individuals who prefer to hold back and interact from a safe distance. Or imagine supporting a young person whose mother is terminally ill as a result of HIV\Aids. Some young persons might prefer the child and youth care worker to be there when the mother dies, whereas others might prefer the worker not to be around. It is therefore important for the child and youth care worker to establish the individual young person's preferences. This can often be done during the good times, during hanging out. Some of these preferences might be verbally expressed while others might be expressed through actions. The practitioner needs to strive to know the individual preferences of each young person s/he is working with and the family.

Hanging in, in good times and bad
Garfat (1999) describes hanging-in as staying the course, not giving up, or remaining committed. The child and youth care workers will need to be willing to be there, with the young persons, when they need them most. Garfat further reminded us that there are numerous stories with one common theme – a failure of child and youth care workers to hang-in when the going got tough. This kind of commitment needs to be established before one gets involved in the area of dealing with the HIV/Aids infected people, otherwise a lack of commitment may bring about even more distress to the young person and the family. An inability of the child and youth care worker to hang-in means that the young person and their family will have to start all over again, to connect with someone new, to go through their pain all over again. Hanging- in is one of the hardest of youth care competencies:

"It stretches us to the limits of our abilities. It threatens our sense of commitment. It demands professional greatness. And, above everything else, it challenges our self-talk about why we are in this business.” (Garfat, 1999)

Although some young people and their families may have the support they need during the time of distress, this support may vanish. Child and youth care workers may need to be on stand-by in case other people, including family members do not manage to hang-in during difficult times. The child and youth care worker needs to be aware that the young person might need him/her most during these moments. It would be easier for the child care worker to hang-in during bad times when s/he has been around during good times.

Friends tend to be fewer during dark moments therefore the young person needs to be assured that the child and youth care worker will be around during difficult times, but it is very crucial that the worker be sensitive to the cultural practices when hanging-in. For example, even if you are known to the family and have been around for a long time, during the time of death and grief the family may need to be alone. The worker should not take offence if asked to be excused. The matured professional child and youth care worker will view this as an attempt by the family to take control of its own situation “a strength indeed! Grief is present all the time. Child and youth care workers have nevertheless to be present and care for each other and the children who are grieving. Given the level of traumatic experiences, one wonders how many child and youth care workers will able to hang-in for longer periods.

Working with HIV/Aids infected/affected people brings about complex responsibilities. It demands flexibility and creativity in terms of applying any knowledge, skills and approaches. No one approach can claim to work more effectively than others. The characteristics I have discussed in this chapter are by no means more effective or better than those I did not include here. A combination of approaches might work better with some young persons and families but not with all. Child and youth care workers need to constantly review the approaches at their disposal, with the aim of finding those that will work with particular young persons at particular times.


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This chapter: Molepo, L. (2005). Working with youth and families affected/infected by HIV/AIDS within the South African reality. In Garfat, T. and Gannon, B. (Eds.). Aspects of Child and Youth Care Practice in the South African Context. Cape Town. Pretext. pp. 63-74.

*This is the seventh in a new series of chapters which the authors have permission to publish separately and which they have now contributed to CYC-Online. Read more about this program.

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