SECTION II Literature Review
4.4. Risk factors relevant for children in high prevalence HIV/AIDs communities
4.4.4. Children's understanding of illness and death
The psychosocial impact of chronic terminal illness in children is relevant to this dissertation, especially for those children who are HTV+. Kubler-Ross (1983) asserts that terminally ill and dying children mature more quickly through their powerful experiential and environmental learning. Dying children not only understand that they are dying but also develop mature concepts of illness and death (ibid.). Although the cross-cultural applicability of this theory has not yet been ascertained, it may be relevant in dealing with the psychosocial needs of children who are terminally-ill with an AIDS-related condition or who are witnessing the death of loved ones.
The acquisition of any concept is attributable to a variety of developmental and contextual variables such as biological readiness/maturation, life experiences, intelligence, family attitudes and values (Orbach, Gross, Blaubman & Berman, 1986). A mature concept of death can be considered to incorporate three essential elements: (i) irreversibility - an awareness that once someone is dead, they are not going to come back to life; (ii) non-functionality - an understanding that all life defining functions have stopped, e.g. the heart no longer beats and the person can no longer feel pain; and (iii) universality - an awareness that everyone will die and that it is not only the old who die (Ayyash-
Abdo, 2001; Speece & Brent, 1984). The understanding of universality that most cultures implicitly hold concepts of "good death" where the deceased is old or has been suffering for a long time and
"bad death" where it is unexpected, self-inflicted and/or the deceased is young. AIDS related deaths are usually regarded as "bad deaths", and much money will be spent on trying to cure a terminally ill person and ward off the pending "bad death" (Marcus, 2002).
Little is known about the way in which children acquire an understanding of illness and death in the midst of a pandemic. Logically emotional and experiential factors would be critical in the child's understanding of these concepts, as well as in determining the degree of sophistication of a child's view of illness and death. Previous experiences of serious illness and death facilitates a better understanding of all aspects of illness and death and a different order of acquisition of the concepts (Ayyash-Abdo, 2001; Orbach, Gross, Blaubman & Herman. 1986; Kane, 1979). There are also a number of social and contextual variables that are likely to significantly impact on the way in which children understand illness and death. Methodological variations in the studies on the acquisition of the illness and death concept have contributed to some of theoretical diversity: some have used healthy children as their subjects (Kane, 1979; Kastenbaum, 1972; Anthony, 1940), whilst others have considered the experience of the dying child's awareness of death (Kubler-Ross, 1983).
There are various theoretical schools that have attempted to understand how children developmentally grasp the concepts of illness, death and dying. Perhaps those that confine themselves to description are the most relevant in the current research context. Anthony's (1940, in Aldwin, 1994) classic studies on British children found that children frequently think about death.
He identified five stages in the process of understanding death, with the most pivotal stage occurring at around 7 or 8 years. The child moves from apparent ignorance to a clear and logical grasp of biologically essential terms of death. Using child subjects who had considerable experience of death and the horrors of war, Nagy (1948, in Aldwin, 1994) identified three stages in the development of the death concept: (i) the separation stage (3-5 year olds) when the child is capable only of grasping that a significant person is separated from them and such separation is presumed to be temporary in nature - they look or wait for the deceased; (ii) One personification stage (5-9 years) is marked by the child assigning the qualities of a person/spirit to death and perceives it as something that should not be happening - 'someone' comes, often in an aggressive way, and takes away the deceased; and (iii) a realisation that death is universal, inevitable and is a lawful process (age 9 years onwards). Kubler- Ross (1983) contends that terminally ill and dying children grow up and mature more quickly
through their powerful experiential and environmental learning. Dying children not only understand that they are dying but also develop a mature concept of death at a more rapid rate to those children who have little exposure to terminal illness and death.
Studying children suffering with leukaemia, Bluebond-Langner (1978, in Killian & Perrott, 1994) distinguished five successive stages in the acquisition of disease information, with concomitant changes in the self concept: (i) The child realises that s/he has a serious illness and his/her self concept accommodates the notion of being seriously ill. (ii) The child begins to be aware of the drugs and side effects and the self concept responds by acknowledging the serious illness although s/he maintains a belief that s/he will get better, (iii) The child begins to understand the purpose of treatments and procedures and accepts that s/he will always be ill, but there will be times when s/he will feel better, (iv) Gradually the child becomes aware that the disease consists of a series of relapses and remissions but /he denies the terminal nature of the illness. The self concept incorporates the idea that s/he will always be ill and will never get better, (v) In the final stage, the child is able to acknowledge that death is probable and the self concept adjusts to the reality that s/he is dying. Progression through these stages is dependent upon significant cumulative events occurring throughout the course of the illness. In HIV+ children, stages two and three may not be possible in the absence of treatment regimens being available for the vast majority of sufferers. It seems that the role of experience is more pertinent to the child's understanding than age or intellectual ability. For example, 3 and 4 year old terminally ill children knew more about illness than very intelligent nine year olds. Thus, experiential learning is a significant factor for terminally ill children. It is significant that children seem to acquire much of their information about the nature of their illness indirectly by observing the subtle changes in their significant caregivers' reactions after the diagnosis and prognosis had been given and eventually accepted (Black, 1996; Wachhter, 1979, in Stillion & Wass,
1979). The significance of experiential learning may be especially detrimental since the prognosis is bleak and treatment unavailable. Children observe their family members' profound suffering, physical deterioration and eventual death. The impact of this observational learning may need serious consideration in terms of media campaigns, government health policies and the families own cognitive framing of HIV/AIDS.
Children's understanding of and ability to cope with illness and death seems to be mediated by cognitive factors (Christ, 2001; Dowdney, 2000; Killian & Perrott, 1994). The cognitive theorists argue that complex interrelationships between disease, personal, familial, social and medical
variables (Shute & Paton, 1992; O'Dougherty & Brown, 1990) are predicated on the child's perception of and response to illness and death (Lazarus & Launier, 1978; Moos & Tsu, 1977). For example, Piaget's theory of cognitive development has been used as a basis for understanding the developmental sequence of the child's understanding of illness and death (Killian & Perrott, 1994).
Among the axiomatic principles of Piaget's theory is the belief that children are active scientists who set out to develop an understanding of their world in sequential stages, each stage being qualitatively different from the previous one (Shaffer, 2002). During the first stage, there is no conscious thought and limited language, so the child in this sensorimotor stage knows and discovers through doing. The pre-operational stage (2- 7 years) is characterised by (i) egocentric thinking in which the child is capable of seeing his/her own perspective and is not able to consider another's perspective; (ii) magical thinking in which fact and fantasy are blurred and the child may believe that they can cause something to happen just by thinking about it.; and (iii) over-generalisation -if one person becomes ill or dies, then others will soon follow this same pattern and die (O'Dougherty & Brown, 1990).
During the concrete operational stage (7-12 years), children develop the capacity for deductive reasoning and are able to 'decentre' i.e. simultaneously focus on and understand, the relation between several attributes of an object or event. The formal operational stage extends from adolescence into adulthood. It is at this stage that the individual becomes capable of inductive reasoning and abstract thought.
Working from within the Piagetian cognitive framework, Bibace and Walsh (1980) describe the developmental acquisition of understanding the aetiology of illness and disease. Killian and Perrott (1994) found support for this theory when they worked with a sample of hospitalised Zulu children.
At the pre-operational stage children have a rudimentary understanding of body parts (O'Dougherty
& Brown, 1990) and understand illness in terms of phenomenism - they attribute the cause of illness to be an external concrete phenomenon that may co-occur with the illness, but which is spatially and/or temporally remote (Killian & Perrott, 1994); and contagion - the cause of illness is located in objects or people that are proximate to, but not touching the child, an example of magical thinking (Bibace & Walsh, 1980, p. 36). The combination of ego-centric and magical thinking combined with over-generalisations, makes children in the pre-operational stage of cognitive development are particularly vulnerable to feelings of guilt for having 'caused* a death to occur (Killian & Perrott, 1994) and are especially fearful of subsequent deaths of significant attachment figures in their lives.
Their conceptualisation of illness and the death may make them especially clingy and dependent, anxious and guilt-ridden.
At the concrete operational stage, children attribute the aetiology of illness to contamination in which they consider an external person, object or action that was harmful to, or bad for, the body (O'Dougherty & Brown, 1990), or internalisation that occurs when the child realises that the cause of illness is either an external contaminant that was internalised (through breathing or ingestion), or an unhealthy internal state such as old age or high blood pressure (Bibace & Walsh, 1980). At the stage of formal operations, the child's rapid cognitive advances facilitate an understanding of illness, the body and body systems (Crider, 1981, in O'Dougherty & Brown, 1990). Adolescents come to realise that illness is triggered by internal bodily dysfunction. They begin to differentiate between various aetiological factors, speculating and hypothesising about cause-and-effect relationships (O'Dougherty & Brown, 1990, p. 243). Therefore, illness is perceived to be caused by external events, but the source and nature of the illness lies in specific internal structures and functions.
Psychophysiological explanations are considered to represent the most mature explanations of illness as the child is now able to describe an illness in terms of internal physiological processes and also suggest that thoughts and feelings can affect bodily functioning and be related to the onset of illness (Bibace & Walsh, 1980).
These western theories are based on the assumption of opportunities to acquire both formal and informal knowledge about illness and death. For example, adolescents who attend biology classes are likely to develop more mature concepts of illness and death. When one experiences a linear process of symptoms, diagnosis, treatment, amelioration of symptoms, one internalises the meaning of medical intervention (Saler & Skolnick, 1992; Siegel & Gorey, 1994; Siegel, Mesagno, Karus, Christ, Banks & Moynihan, 1992). In the absence of these opportunities an entirely different process may occur in terms of children's understanding of illness and death.