Fouche cited in Nash, Munford, and O’Donoghue (2005) postulate that being diagnosed with HIV/AIDS often highlights for the first time-associated behaviours such as homosexuality, sexual activity in children, adolescent pregnancy, or sex outside of marriage. These stereotype behaviours are seen as taboo in African societies. Further to this, the stigmatisation and discrimination that people affected with HIV often live with is passed onto their children, making their grieving, loss and change process complicated. If grief is not handled properly the affected people may continue to experience recurrent acute grief, helplessness, psychological instability and stress related physical sickness. One’s health is affected as a result of the disintegrated identity; loss of self, goals, purpose of living and future will diminish as intense pain is created. Although this pain of loss is unbearable, it is sad to see the spouse of the infected taking additional responsibilities of managing the house and caring for the children without enough resources. The above responsibilities and other critical issues such as change of roles, may result in the spouse experiencing extreme feelings of loneliness and lack of companionship as he or she goes through emotional adjustments from the initial onset of diagnosis, adaptation to the reality of impending death, through to the actual death.
Older people and loss experiences
Worden cited in Kissane and Bloch (2002) postulate that the elderly bereaved are one group at risk of particular difficulties because of the deep attachments that may have developed over many years, through marital interdependence, entrenchment in family roles, exposure to multiple losses, awareness of their own mortality and profound loneliness. Although AIDS is a common and well known killer disease in Africa, people react differently with some opting for suicide because of fear of the unknown. For example the infected will pause questions such as; what will happen to me, my spouse, my child, my parents? Who can I tell? Would they look at me differently? In some situations, the threat and fear can align with a personal feeling of chaos and one may feel lost from their old selves. According to Granich and Mermin (1999) the first feelings that people have after finding out they have HIV may include denial, anger, fear, sadness, hopelessness, guilt and some may talk about hurting themselves or other people. Granich and Mermin (1999) argues that family members may be surprised to find out about the situation that put their beloved one at risk and may feel betrayed if the person had sex outside the relationship. This brings more distress on older people as they mourn their failure to instil desirable values in their relative. As a result, they may be ashamed with the belief that HIV brings dishonour to the family and their contact with the community will be affected because they may fear rejection and isolation. According to Fouche cited in Nash et al. (2005) it is not surprising that discussion about HIV and AIDS in African communities is clouded by conspiracy, prejudice, fear or disbelief and the reaction to this are discrimination, blame and lack of responsibility. Kissane and Bloch (2002) see the experience of a life threatening illness as a source of considerable stress, not only to the patient but also to the carers, who share in the grief and associated psychological distress.
For the young, loss can be devastating and unshielded
According to Goldman (2001) today’s children experience grief differently because of their exposure to the media news, Internet, music and videos that constantly bombard them with images of school shootings, killings, violence and abuse. However their exposure to the said influences does not make them immune to loss, grief and change, as it is human nature to resist change and any sudden change will cause major distress to children as they try to understand what is happening to their father or mother and why he or she could not be available for them. Goldman (2001) further suggests that children who have close family members with HIV worry about getting it, worry about people they love and lie to their friends about the disease, but will regret not telling the truth as it makes them feel like they had a monkey on their back. All they really want is a reversal of the disease and they dream of past happy moments when the family was intact. They hurt to see their parents or siblings crying all the time and think about what will happen next. Indeed thinking about dying is hard hence many people don’t want to talk about it because it makes them sad. A 12 year old quoted by Goldman (2001) states that living with HIV and knowing that you can die from it is scary and the hardest part is not knowing when and where this will happen.
Masci (2001) sees depression, more frequent among HIV infected patients at all stages of the disease, this is accompanied by feelings of hopelessness and for those affected therapy may seem pointless. The whole family experiences loss and a vacuum is created as they are all forced to confront and deal with the uncertainties this disease brings.
When the first parent or caregiver becomes ill with HIV or AIDS, and is unable to work, the entire family feels the economic impact resulting in confusion, loss of motivation, depression and other related psychological effects. On top of the psychological impact of losing one’s parents, children who lose their parents to AIDS are often stigmatised or ostracised by their communities. These children are often much more at risk of becoming victims of violence, exploitative child labour, and discrimination or other abuses.
Social work role and partnership
Masci (2001) proposes that effective care of HIV infected individuals requires an extensive multidisciplinary approach composed of medical professionals, such as doctors and nurses, social workers and others including community health workers. Without professional intervention the impact of grief, loss and change may be prolonged and incapacitate the functioning of the family. People with HIV need emotional support, physical comfort and above all, someone to talk to. The Social worker’s aim is to help individuals to absorb and process information gradually rather than being overwhelmed or eclipsed by it. It is paramount that individuals are helped to understand the facts about HIV transmission and prevention in order to identify behaviours that may put individuals at risk. Social workers in Zimbabwe and other countries have been working in partnership with the infected and are valuable in aiding these patients and their families through their emotional changes by educating them on the disease, getting the family to talk about the disease and helping to establish networks and support from community service providers. Kissane and Bloch (2002) argue that a family centred model of care is an essential requisite of responsible services seeking to meet the needs of both the patient and family and to maintain support in bereavement. This approach involves creating a list of coping strategies with the family on what may help them and a list of issues that may appear to be of concern.
Talbot (2002) claims that coming to an acceptance of the reality of the loss takes time since it involves not only an intellectual acceptance but also an emotional one. However Bruce and Schultz (2001) suggests three primary objectives of therapy in working with life changing illness and trauma which are; preserve identity, restore control and facilitate adaptive reality testing and grieving. However there are unique individual ways of gaining control over the grieving process and these strategies include praying, keeping a journal, talking out their anger, fears and resentment or establishing scholarships and memorials. I believe that the social worker should be skilled and sensitive when proposing coping strategies as the client shouldn’t feel obligated to act on the social worker’s word. The affected people should also be encouraged to engage in reciprocal grieving with other bereaved families by sharing their own feelings, experiences and lear to take care of themselves.
As for children, Furmanek cited in Walsh-Burke (2006) believes that children need to grieve the loss of their parent even if the parent hasn’t passed away because they would have lost the ideal home environment, their neighbourhood if they were to come into foster care and their school relationships. These children need to be reassured that their fears of death are a normal part of grief and that these fears will eventually subside. They can also be invited to write about the person who has AIDS or who died and any worries, fears or longing they have toward their beloved one (Goldman, 2001). By allowing children to share, express and release their feelings in many ways, they will begin to release the trauma. It is also important to build the family relationship as individual’s self esteem may be affected and they may feel insecure. “Does my spouse still love me the way I am, am I a burden?, What are they thinking of my illness?” Granich and Mermin (1999) argue that people with HIV would want to talk about their health, their relationships with friends and family, and talking openly about these things will help them to accept the fact that their lives are changing. Bruce and Schultz (2001) suggest that individuals in this predicament are out of their comfort zone implicated in a state of emotional disequilibrium.
I have had an opportunity to witness social workers playing an important role to support and inform the affected individuals that they are not alone and help them to work on what is emerging in their new world. It is important to accept the reality of their new world and adjust so as to survive its challenges. Bruce and Schultz (2001) suggest that adapting and grieving involves the reworking of personal models of the world that has become redundant following a significant loss and change. This process can be well supported with the concept of support groups, as it is often useful for a group of people with the same problem to get together and talk about their lives. Granich and Mermin (1999) believes that Support groups of people with HIV give people a chance to talk about their problems and successes. However these support groups are not only useful to people with HIV, but to family and friends as they may have fear of losing their relative or fear of being infected or being shunned by their community.
Cultural considerations and spiritual dimensions.
According to Kissane and Bloch (2002) culture is a powerful influence on grief. The pattern of mourning in an ethnic group provides insight into the norms and customs of that group as its rituals strive to maintain its social order. However in the face of cultural change, as when families migrate to a new country, their familiar bereavement practices may be shaped by the host culture and this may potentially hinder the grieving process. Fouche cited in Nash et al. (2005) postulate that interwoven with the African cultural context are the wider social issues of stigma, attitudes of disgust and fear based on cultural views of right and wrong and what is acceptable and unacceptable. It is important to note that HIV infection alters the individual’s relationship with a number of significant other people in his or her life, which can be detrimental at a time of such crisis. Due to the stigma attached, the relationships with the support structures such as the church, schools, peers and extended family may be also seriously affected hindering healing and a smooth grieving process.
Granich and Mermin (1999) suggest that people have many ways of explaining health and illness and as for HIV/AIDS some people believe that it is a punishment for wrong doing, and is caused by bad spirits, magic or result of jealousy. It is therefore important for Social workers to respect the client’s beliefs and those of their community as this will impact on their reception to treatment and counselling. Social workers need to find out what people within the community of the infected believe about AIDS. For example, it will be difficult for someone to accept the use of condoms if they believe that AIDS is caused by magic or believe that traditional methods are as good as or better than western medicine. According to Fouche cited in Nash et al. (2005) many African cultures believe in ethno-medical practitioners, referred to as traditional healers or herbalists for health care and these traditional healers play an important role in South African townships. This is supported by Granich and Mermin (1999) who suggest that each traditional healer in South Africa has an average of 2 000 visits a year from people seeking health care. With this cultural consideration, an HIV prevention program was successfully launched with traditional healers discussing among themselves how to integrate western ideas with their own traditional ideas so as to prevent and treat people with HIV. These are some of the cultural considerations that need to be discussed with the family of the affected.
Religion should be considered as well since Christianity has been growing significantly in African communities. It is believed that as many families become painfully conscious of their own powerlessness to protect those they love, they cling to faith as a lifeline that offers hope and healing.
Availability of resources, policy and service delivery.
Fouche cited in Nash et al. (2005) argues that African countries lack resources in social provision and people living in impoverished areas often experience limited access to social services and medical resources. Several years ago the South African government staked its reputation on its belief that anti-retroviral drugs had serious side effects and therefore would not make them available to its people. Fouche cited in Nash et al. (2005) suggests that this kind of belief and social policy contributed to more deaths of people with HIV/AIDS as the circumstances complicated the problems of identifying, testing and treating people living with AIDS. Other resources such as counselling and provision of condoms in communities were strained, as there was an increase in prostitution, rape and the infected were unaware of their HIV status and would transmit the virus to many others unknowingly. Combating the spread of HIV, is a collective effort and Fouche cited in Nash et al. (2005) proposes that the ruling government, policy makers, professionals and the public at large must understand the ecological perspective when formulating public information, launching prevention campaigns, working with client groups and sharing community life. Fouche cited in Nash et al. (2005) argues that HIV interventions have operated on the assumption that conveying knowledge and information about the disease is central to the development of appropriate and effective preventative measures while it is the individual’s responsibility to focus on reducing the risk of transmission and behaviour change.
Conclusion
Grief and loss will affect each of us at some point in our lives and how it is managed will determine recovery and healing. The approach to facilitating and helping individuals to deal with grief, loss and change depends on a number of issues including age. While research indicates that older people experience more losses than any other age group, it must also be noted that such losses may be more devastating when experienced by young children whose lives may be permanently changed by loss. The impact of loss and change produces change in the family system and some families are able to cope and resume their prior level of functioning with a deeper appreciation of life while others are demoralised and suffer long-term psychological damage. Therefore social workers need to consider culture and spiritualism when dealing with people from different backgrounds as this may contribute to their healing process.
References
Bell, E. (2005) The A to Z of Loss: The handbook for healthcare, Oxon, Redcliffe Publishing Ltd,
Bruce, E.J., Schultz, C.L. (2001) Nonfinite Loss and Grief, Baltimore, Maryland, Brookes Publishers.
Goldman, L. (2001) 2nd edition Breaking the Silence, New York, Brunner Routledge.
Granich, R., Mermin, J. (1999) HIV, Health, and your community, A guide for Action, California, Stanford university Press,
Kissane, D.W., Bloch, S. (2002), Facing death, Family focused grief therapy, Buckingham, Open University Press.
Masci, J.R. (2001) 3rd Edition, Outpatient management of HIV infection, Florida, CRC Press LLC.
Nash, M., Munford, R., O’Donoghue, K. (2005) Social work theories in action, Philadelphia, Jessica Kingsley Publishers.
Talbot, K. (2002) What forever means after the death of a child, Transcending the trauma, living with the loss, New York, Brunner-Routledge
Walsh-Burke, K. (2006), Grief and Loss, Theories and Skills for Helping Professionals, Boston, Pearson Education.
