SECTION VI: DISCUSSION AND CONCLUSIONS Chapter 12: Discussion of Results
3.2. Illness, home-based care and witnessing physical debilitation
The prolonged period of illness with the associated vulnerability to opportunistic infections such as TB and pneumonia, creates an emotional roller-coaster for the children. As the parent/primary caregiver suffers from increasingly frequent bouts of illness, caring for the sick may absorb all of a family's emotional and physical energy over many years (Gilborn & Nyonyintono, 2000; Karlenza,
1998). Children may be neglected. They frequently shoulder the burden of caring for the sick and dying, as the adults in the household are too old, infirm, or committed to other activities, to manage without the assistance of the children (Ayieko, 2003; UNICEF, 1999). Simultaneously, much of the family's financial resources could be depleted with costs being incurred as people seek treatment from both western and traditional healers (Fox et al., 2002; Marcus, 2002).
During this stage, children are likely to develop various symptoms in reaction to the degree of emotional distress pervading the home (Fox et al., 2002). One New York City-based study showed that 40 percent of the children (ages 8-12) whose mothers had late-stage AIDS had elevated symptoms of mental health problems, regardless of the children's age or gender (Landman, 2003).
This study showed that high maternal distress, poor parent-child relationships and stage of illness were associated with behavioural problems.
As the illness progresses, ailing parents as well as other adults within a household (who are probably themselves in emotional turmoil or grieving) are likely to become progressively less able to discipline and supervise their children (Hudis, 1995; Wild, 2001). Children need routine and discipline to provide security and predictability about the world (Erikson, 1963; MSdQrin, 2000;
Refugee Studies Centre, 2002). Routines and their associated security are particularly upset when several family members are infected, become ill or die. The literature suggests that children are likely
to suffer with internalising disorders as they become anxious, depressed and socially alienated (Corr, 1996; Lutzke et al., 1997; Tremblay & Israel, 1998),
During this stage children experience social suspicion and increasing ostracism as rumours about the possible cause of the illness begin to spread around the village/community (Fox et al., 2002).
There will be financial deterioration as the economically-active members of the household divert energies to HBC and money is spent on seeking a cure. Family lives are thrown into turmoil as people begin to have differing views about when and where to seek help. The burden of caring for the ill can be particularly draining of emotional and other resources, since various additional household responsibilities arise. This in turn creates emotional distress in the children (Brown &
Lourie, 2000; Cook, 1998; MSdorin, 2000).
Experiencing the illness of a parent has a profound effect on a child. The HBC of the parent, immediately before the death, exacerbates the child's feelings of guilt, responsibility and fear, even though it also affords the child the opportunity to engage in active-coping strategies. It is physically and emotionally draining to care for someone who is seriously ill at home and when faced with a lack of resources all family members are likely to become fatigued, irritable and frustrated.
As the dying person realises that death is near, they may be placed in an emotional and cognitive quandary. Generally there is no social or cultural sanctioning for speaking about impending death (UNAIDS, 2001), as many African people still hold a superstitious belief that speaking about death, 'invites death in' and indicates that one wants the dying person/oneself to die (Personal communications, 2002). In many communities, speaking about death may also be perceived as being indicative of participation in witchcraft (Cook, 1998; Foster & Williamson, 2000). Even in the terminal stages of an illness, conversations usually revolve around finding cures (Marcus, 2002).
The custom of not speaking about death has various adverse consequences for children: (i) preparation for death is minimal and very little is done to prepare a child for the impending death of his/her parent/primary caregiver; (ii) succession planning is minimal - only 2% of Zimbabwean families wrote a will (Drew, Foster & Chitima, 1996, in Foster & Williamson, 2000); and (iii) it denies the dying individual the opportunity to prepare for his/her own death (Ayieko, 2003). Perhaps most importantly from the child's perspective, it leaves the child feeling confused, scared and anxious, as s/he realises that the parent is critically ill and yet no-one explains what is happening, or why it is happening, leaving the child at the mercy of his own immature cognitive and emotional processes. Not being able to speak about death also impedes the process of preparing for one's own death emotionally, socially and attending to post-death issues such as guardianship and inheritance (UNICEF 2000a).
33. Impact of parental death:
The death of a loved one is an ubiquitous human experience that everyone will face at some point in their lives (Bonann & Kaltzman, 1999). Grief consists of a set of individualised psychological and physiological reactions to the death, normally considered to include deep sadness, painful awareness of loss, physical distress, reminiscence, anger, anxiety, depression, risk-taking behaviours and despair (Killian & Perrott, 1994). On the other hand, mourning represents the conventional behaviour determined by the customs of a particular society and as such it is embedded in the cultural context (ibid.). Therefore, death of a family member is simultaneously a social and a private event (Marcus, 2002). The death of a parent from an AIDS-related illness is especially difficult because of the stigma and real-life consequences for the children (Lin, Rotheram-Borus & Stein, 2001; Reyland, McMahon & Higgins-D'Alessandro, 2002).
A family member's death can be the catalyst that propels children into escalating turmoil.
Irrespectively, the psychosocial needs of children generally receive lower priority than the pressing need to organise the funeral and follow customary practices in order to regain or maintain status in the community. Funerals tend to be lavish, costly ceremonies (Marcus, 2002), that fail to take into account the economic needs of the bereaved family. Despite extreme poverty, funeral expenditure is perceived to be essential in order to send the deceased to ancestors with goodwill and peace (de laHarpeetal., 1998).
Although in some areas, customs are beginning to change, it is highly unusual for children to be told of a parental death or to participate in the funeral or other grieving rituals (Akukuwe, 1999). The impact of excluding children from these rituals has particularly negative effects because the death and the vigil usually occur in the family home. The grave is usually within the homestead.
Nevertheless, in the mistaken attempt to protect children from the harshness of death, children are (i) told untruths about the whereabouts of the deceased (e.g., "Your mother has gone to Johannesburg"), (ii) told to stop asking questions (e.g., "Go and play", "Show respect"), or (iii) an elder will whisper into the sleeping child's ear that their loved one has died (Personal communications, 2002). Very young children are unlikely to be told of the death. Even in the long term, relatives are inclined to take in very young children and never directly reveal their orphan status to them (Mann, 2002).
Although there are tribal and community differences, children who are old enough to realise what is happening (culturally estimated to be 4 years and above) are not allowed to see the deceased, the coffin, or the grave and are prevented from participating in funeral or burial rites (Mann, 2002, p.
10). By force of circumstances, these customs are changing. Nowadays it is often only the children who have the strength to carry the coffin (ibid.). However, they are still infrequently told whose coffin they are carrying and they usually only learn of their orphan status from peers, other children in the household, neighbours, or at times, in fits of rage by exasperated caregivers. Once the child
has discovered their orphan status, they usually do not disclose this information to primary caregivers, for fear of seeming to be ungrateful to their new caregivers or disrespectful of the deceased (ibid.). Older children generally retain their family name, whereas younger children frequently informally adopt the name of the caregivers, leading to bureaucratic difficulties when they need to apply for birth, life, or death registration and certificates.
These customs have several consequences. Firstly, it could leave children feeling confused and unable to understand or participate in the grieving and mourning processes. Secondly, it may increase the child's frustration at not being able to understand and being denied any socially- approved mechanism through which clarity can be sought. Thirdly, it strongly demonstrates to the child that it is unacceptable to discuss or express feelings of grief and sadness. The absence and impossibility of dialogue may precipitate children feeling alienated and isolated, thereby contributing to the self-perception of being different and a burden on one's caregivers (Brown & Lourie, 2000;
Foster et al., 1997a; Schoeman et al., 2000).
The loss of a parent is of immense significance for a child (Corr, 1996; Lutzke et al., 1997; Tremblay
& Israel, 1998). With parental death, children lose the love and nurturance previously provided by their parent/s. The death of a mother is likely to have profound psychosocial consequences since it may signify the loss of the most secure attachment figure in a child's life. The loss of a father often means the loss of income and results in increased economic deprivation (Foster & Williamson, 2000;
Vladorin. 2000). Parental death is also frequently accompanied by other major changes in children's lives. The psychological impact of parental death can emerge at any time, even years later and can greatly reduce a child's ability to integrate into family and social activities (Fox et al., 2002, p. 12).
Households may fragment or re-organise. Siblings may be sent to live with different members of the extended family. Interestingly, sibling dispersal is a predictor of emotional distress in children (Nampanya-Serpell, 1998). Family roles may change with children taking on adult responsibilities (Reyland et al., 2002).
Individuals vary in their response to the death of a significant other (Fox et al., 2002). The bereavement response will be influenced by closeness of the relationship with the deceased, the personal concept of death and previous experience with death (Kandt, 1994). The psychosocial impact of losing a parent is no less significant on children and youth in developing countries than in the developed world. Nevertheless, the pressing needs for basic survival tend to dominate family concerns and priorities where the major focus is usually on meeting the basic survival and material needs of children.
Children live with extreme distress and uncertainty while they experience the full impact of death.
A qualitative study conducted in rural Zimbabwe with AIDS orphans revealed that the areas of concern for the children themselves included feeling different from other children, high levels of
stress, stigmatisation, exploitation, uncertainty about their education and lack of tangible support from relatives in the form of visits and expressed concern (Foster et al., 1997a). AIDS orphans reported that the social and self-imposed silence surrounding issues pertaining to death, reinforced feelings of grief, loss and failure since it prevented them from preparing for the inevitable death and left them feeling that they did not do enough to try to prevent the death (ibid.). AIDS orphans also report more disruptions to their education ( Ankrah, 1993; Foster et al., 1997; Fox et al., 2002;
Gilborn & Nyonyintono, 2000), more depression (Sengendo & Nambi, 1997) and higher levels of emotional distress than children orphaned through reasons other than AIDS (Foster et al., 1997a).
It seems that the loss of consistent nurturance is a critical predictor for developmental problems (Fox etal., 2002; Rutter, 1984).
Over and above these factors, AIDS orphans experience extreme poverty (Ntozi, 1997). They live in fear that they will be Hrv infected (Foster et al., 1997b) and will die in similar terrible and painful ways as they have observed family members die. Many do. The distress of losing a parent can leave children feeling stigmatised, more prone to dropping out of school, socially isolated and alienated from friends, exploited through increased work loads, hopeless, fearful and anxiety-ridden (ibid.).
They hold lower expectations for the future and are less likely to believe that they would be able to find employment (Foster & Williamson, 2000). In a Zambian study, 82% of primary caregivers noted that subsequent to the death of a parent, children became worried, sad, tried to help in the home, stopped playing with friends, became more solitary and fearful of new situations (Poulter, 1997), If orphaned children are to develop the resilience they need to deal with the challenges in their lives, their psychosocial needs must receive proper and prompt attention (Cook, 1998; MadQrin, 2000).Therefore, the way in which a parent's illness and death are handled within the family are critical to a child's future psychosocial functioning (Rutter, 1994). Psychosocial support is a mechanism through which the feelings and experiences of those children orphaned by AIDS could be ameliorated (Madorin, 2000).