Hiv & Multiple Bereavement Syndrome HIV/AIDS and Multiple Bereavement: Is the psychological impact of multiple loss intensified by social factors? “The advent of AIDS has created a new population of people who suffer multiple bereavements as well as threats to their own lives.” (Murray-Parkes, 1998, p. xii) The populations most affected by HIV/AIDS live in two geographical locations: the USA and Africa (WHO, 1998) . In 1997 four million people in the Sub-Saharan Africa were newly reported as having seropositive status (WHO, 1998). In North America this figure was 44 thousand (WHO, 1998). Seropositive rates among Gay men in New York City are reported at 36 to 67% (Dean L, 1995).
Infection rates amongst young, urban males in Uganda range from 20 to 30% (Seeley & Kajura, 1995). With these high figures and similar infection rates among males in mind, this essay will discuss the relationship between social factors and the psychological impact of multiple loss in an international context. The evidence I have considered principally comes from Uganda and the USA which will allow me to evaluate the commonality of experience and the usefulness of theories on multiple loss in differing cultural and economic situations. The impact of the HIV virus is such that it creates ‘..a cycle of never ending perpetual grieving for individuals affected by HIV/AIDS and the professionals who care for them.’ (Cho & Cassidy, 1994, p.274). Yet, there seems to be no significant relationship between the number of individual losses and the intensity of the grief experienced (Cherney & Verney, 1996; Cho & Cassidy, 1994).
Cherney & Verney (1996) also found that there was no correlation between age and intensity of grief. This is unexpected since younger individuals are expected to show a higher intensity of reaction to grief (Sherr L, 1995). Discussing this issue Ankrah (1991) and Seeley & Kajura (1995) suggest that young people may have become habituated to multiple loss because there is no cure for AIDS, ‘ .. the people to become immoderately tolerant of death.’ Cho and Cassidy (1994) offer a different explanation. They believe that habituation might reflect a state of protracted grief rather than a tolerance of death. This argument implies that people may have become habituated to multiple loss, and made adaptive emotional responses. This suggests that multiple losses influence the grief process.
Cho & Cassidy (1994) found that those affected by HIV/AIDS showed common characteristics: Chronic Bereavement and Truant Grief, i.e., prolonged or delayed grieving. The effects of this are compounded if more than one loss occurred. They argue that this creates a Multiple Loss Syndrome which is characterised by Truant Grief; a delayed grief response where grief is postponed until it can be coped with without the additional demands of the outside world. In this process, multiple loss influences the grief process in such a way as to create a threshold of intensity of grief which becomes established during early losses and then is not surpassed. In order to discuss this explanation further, I will use two distinctive but comparable models of the stages of grieving (adapted from Cho & Cassidy, 1994 and Cherney and Verney, 1996).
Cho and Cassidy (1994) describe a model based on the psychosocial tasks of grieving. Cherney and Verney (1996) use a model of the psychological processes of grieving based on the work of Sanders (1989). In these models, process and task mirror one another over five stages. The grieving process for people living with HIV/AIDS can begin when diagnosis is made (e.g., Anticipatory Grief: Sherr, 1995; Cho and Cassidy, 1994). The first stage of this process is characterised by shock and denial (Cherney & Verney, 1996). Social issues may come to the fore. Being diagnosed as seropositive may force everyone involved to make reality adjustments to accommodate the lifestyle changes that the infection demands (Cho and Cassidy, 1994).
At this stage the HIV positive person will often ‘be abandoned on disclosure of the diagnosis (Peterson, 1995). Crucially, the loss of social support means that care can then be limited or denied (Lupton, 1999; Seeley & Kajura, 1995). One the shock has subsided there may be an emotional release, as an awareness of the (future) loss is realised (Cherney and Verney, 1996). There may be a great deal of blame and anger at this time (Cho & Cassidy, 1994). Victims can be held responsible for their own illness (Lupton, 1999), especially if the lifestyle choices made led to the infection, and were contrary to medical & public health advice.
The intense anger which caregivers show at this time is exclusive to HIV/AIDS and is partially ‘a direct result of the intense stigma which surrounds AIDS’ (Sosnowitz & Kovacs, 1992, p. 137). Cherney and Verney (1996) describe the next stage of grieving as one of conservation and withdrawal. Once the PLA acknowledges their seropositive status, they feel depression, guilt, and fear (Cho & Cassidy, 1994). Family and carers feel guilty about their anger, and depressed at the events which might lead to death (Sosnowitz & Kovacs, 1992).
This is a period characterised by loneliness and isolation imposed by society (Cho and Cassidy, 1994; Sosnowitz & Kovacs, 1992). In the USA, PLA who were not in a committed relationship showed an increase in despair and social isolation (Cherney & Verney, 1996). Carers in Uganda describe a life of social isolation (Seeley & Kajura, 1995). Yet, providing support and care seems to be as important to the friends and family of PLA as it is to the sufferer. Cherney & Verney (1996) found that carers working with PLA scored lower on intensity of grief and despair sub scales than subjects who were non caregivers. Cherney Verney (1996) and Cho & Cassidy (1994), conclude that individuals experiencing multiple loss may not enter the final two phases of grief.
They argue that multiple loss creates an emotional overload which forces the individual to remain fixed in the third stage of grieving. According to this theory, the final stage of grieving is deliberately postponed until it can be concluded without interference from outside pressures (Cho & Cassidy, 1994). However, Cherney & Verney (1996) present evidence to suggest that the impact of multiple loss is further compounded through external mediators. The influence and strength of these mediators would affect the length of this forced to postponement. Their evidence suggests that social factors influence the grieving process as much as emotional factors. This makes it unlikely that an adaptive response is the sole reason for a non-linear relationship between the intensity of grieving and the number of losses.
The evidence does however, reveal that social pressures are at least as important as emotional overload when grief is postponed. One of the most important of these social pressures is stigma (Seeley & Kajura, 1995; Sosnowitz & Kovacs, 1992). HIV/AIDS is a stigmatised condition and stigma is present from the moment of initial diagnosis and contributes to the bereavement process before the PLA has died (Peterson, 1995). ‘Dying from AIDS is like reliving every past epidemic all at once.’ (Nikiforuk A, 1993, p157), and although the experience of death remains individual, the HIV/AIDS epidemic is also a social experience. Strong (1990) proposes that the HIV/AIDS epidemic conforms to a psycho-social epidemic psychology. In this model, the psychological response of society to the epidemic, influences individual behaviour and beliefs. This affects the response of society and individuals to those people, things and activities which are perceived to put the individual at risk of infection.
The logic of this argument suggests that the initial fear and panic caused by the HIV/AIDS epidemic resulted in the stigmatisation of the infection. Consequently, those who are infected, and/or behaviour which is perceived to lead to infection is also stigmatised . Moral judgements are also made and these seem to be based on behaviour once diagnosis has been made. Concerns are expressed over the victim’s self control, health behaviours, and willingness to reveal their status (Lupton, 1999, Peterson, 1995). However, the social pressure of stigmatisation means that there is a reluctance to let others know their seropositive status. (Lupton, 1999).
Such pressures may lead the bereaved to deny the cause of death (Seeley J & Kajura EB, 1995 et al, 1994). Those involved may be ‘cut off from their grieving process by the hurdles created by the stigma’ (Sherr l, 1995, p.20). This is, in effect, disenfranchised grief, a common feature of grieving for those bereaved through AIDS. ‘Social stigma remains a serious burden for HIV-positive persons and their families studied in Uganda.’ (Seeley & Kajura, 1995, p.80). Stigmatisation, as it is acted out in the social world, creates a reality where PLA/HIV suffer discrimination, unemployment, and loss of friends and family (Lupton, 1999; Peterson, 1995; Seeley & Kajura, 1995). It can lead to an abrupt withdrawal of social support networks (Lupton, 1999; Sosnowitz & Kovacs, 1992).
The repurcussions of this are emotional and financial. In Uganda, networks of friends and relatives become less willing to provide support: other family members may have already died having depleted the available resources (Seeley & Kajura, 1995). This hardship can frustrate tradition. It is customary for those who are kin, friends, and neighbours of the deceased to stop work for the mourning period. The sheer number of deaths could mean that no work would get done at all, threatening the economic viability of the village. This threat could compromise the future of the living and so mourning rituals can be impossible to follow (Seeley & Kajura, 1995).
Again, the grieving process is disturbed. In the USA, the cost of caring for PLA is high and financial resources ‘are often strained to breaking point’ and for many, any hope they might have of receiving support from their friends and family is never realised (Sosnowitz & Kovacs, 1992). Cherney and Verney (1996) found that those in full time employment fare better emotionally than those who are unemployed or working part time. Regardless of the number of bereavements suffered, unemployed subjects scored significantly higher on anger / hostility and sleep disturbance sub scales than those in part time and full employment. Of course, stigmatisation makes it difficult for PLA/HIV and their families to find work and may lead to them being fired (Lupton, 1999).
Economic hardship exacerbates grief (Cherney & Verney, 1996) and in this essay, I have shown that several social factors have an influence on the grieving process, regardless of differences in culture and economy. The financial and social effects of the stigmatisation of HIV/AIDS and the burden of caring have traumatic and stressful repercussions which last beyond the length of the illness itself. Murray-Parkes (1998) points out that the epidemic has provoked research into how the functioning of the Immune Response System, is affected by bereavements and other stresses. These studies should not be restricted to bio-chemical interactions. The findings of sociologists and psychologists working in this field should inform such studies to uncover further correlation between stigmatisation and psychological processes. The issues Strong (1990) raises on the issue of the psycho-social response to epidemics raises real issues for those involved in health promotion and health education.
The psychological effects of stigmatism alone mean that more research is required to ensure that health promotion strategies and health education material does not serve to heighten the panic and suspicion. Bibliography REFERENCES Cherney PM & Verhey MP (1996), Grief Among Gay Men Associated With Multiple Loss From AIDS, Death Studies, 20, pp 115:132 Cho C & Cassidy DF (1994), Parallel Processes For Workers & Their Clients In Chronic Bereavement Resulting From HIV, Death Studies, 18, pp 273:292 Lupton, D (1999), Archetypes Of Infection: People With HIV/AIDS In The Australian Press In The Mid 1990s, Sociology of Health & Illness, Vol. 21:1, pp 37:53 Murray- Parkes C, (1998) Bereavement. Studies of Grief in Adult Life, 3rd Ed., Penguin: England Nikiforuk A, The Fourth Horseman, Phoenix: 1991, pp 155:178 Peterson, KE (1995), AIDS: The Second Decade, in Wass H & Neimeyer RA, Dying; Facing the Facts, Taylor & Francis: 1995, pp 325:324 Seeley J & Kajura EB (1995), Grief and Community, in Sherr, L (ed.), Grief & AIDS, J Wiley & Sons: 1995, pp 73:86 Sherr, L (1995), The Experience of Grief: Psychological Aspects of Grief in AIDS & HIV Infection, in Sherr, L (ed.), Grief & AIDS, J Wiley & Sons; 1995, pp 1:28 Sosnowitz BG & Kovacs DR (1992), From Burying to Caring: Family AIDS Support Groups, in Huber J & Schneider BE (Eds), The Social Context of AIDS, Sage:1992, pp 131:143 Strong, P (1990), Epidemic Psychology: a model, in Mackay L, Soothill K & Mela K (Eds.), cited Classic Texts in Health Care, Butterworth-Heinemann: 1998, pp 35:40 UNAIDS/WHO Web site: http:/www.who.int/emc-hiv/global Psychology.