A comparative study of bereavement between AIDS related and non-AIDS related deaths.

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Sherona Rawat

Submitted as the dissertation component in partial fulfilment of the requirements for the degree of Masters of Social Science (Clinical Psychology)in the

School of Psychologyat the University of Kwa-Zulu Natal,Pietermaritzburg.

June 2006

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- Bereavement, AIDS and non-AIDS related deaths 2

Abstract

This study investigated the differences and similarities in bereavementdue to HIV/AIDS and bereavement due to other forms of death. The participantscomprised of nine (9) mothers and two (2) fathers of deceased children,varying in age from eight (8) months to twenty (20) years.

A single, unstructured interview was used to collect the data. Grounded theory was utilised in the analysis of the qualitative data. Comparisons were drawn between HIV/AIDS and non- HIV/AIDS related bereavement.

The findings indicate a difference in the experience of HIV/AIDS related bereavement and non-HIV/AIDS related bereavement. Stigmaplayed a significant negative role in the experiences of those parents/caregiverswhose children had died from HIV/AIDS. In addition, parents/caregivers experienced significant feelings of responsibility for their child'sinfection although the child had not contracted the disease from the parent.

The implications and applications of this study are twofold. Firstly, a better understanding of the bereavement process can result in importantand innovative recommendations being implemented in order to refine existingHIV/AIDS

intervention programmes or develop new ones. And, secondly,it can result in a more refined approach to the care and comfort that is currently beingprovided for

HIV/AIDS patients and terminally ill patients and their families.

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ACKNOWLEDGEMENTS

Iwould like toexpress mygreatest gratitudeto my supervisor, Professor Graham Lindegger,for his patience, guidance,encouragement , supportand

compassion.Thank you for being not onlya great supervisorbut also a friend, and a mentor.

In addition,I am grateful to themoms and dads who sogenerouslyagreed to be interviewed . Theirwillingness to share,theircourage in broachingsucha painful experience and theirselflessness in wanting tohelp otherswho have suffered the same faith is deeplyand graciously appreciated.

Iwould like tothank my children, Nazeera, Waseem and Azeeza for their patienc e. support and faith. The sacrifices theyhavemade have not gone unnoticed. I

would like to thank my parents,Feriel and Ebrahim Rawat,for providing financi al, emotionaland practical support for my children and myself. In addition,I would like

tothank mybroth ers, Mohamed Rawatand Dr Shiraz Rawat, and their wives, Razeenaand Farzeen, and their childrenAzizuallah,Aaminahand Aadila for their support andassistance. Iwould also like to thank mycousin,Dr. Som ayya Coo vadia

for her underst anding, emotionaland financi al support .

Withoutmychildren, my family, friends and my supervisor's unfailing support and extraordinarygenerosity, the completionof this researchdissert ation

would not havebeen possible. May God bless youall.

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- Bereavement,AIDS and non-AIDS related deaths 4

DECLARATION

This thesis was undertaken at the Schoo lofPsychology, Unive rsityof Kwa- ZuluNatal, Pieterm aritzburg. Unless specifica lly indicated to thecontrary in thetext, thisthesis is a product of theauthor 's own work.

SheronaRawat Pietermaritzburg June 2006

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Tableof Conte nts Title page

Abstract

Acknowledgements Declarati on

Contents

Chapter I:Introdu cti on Chap ter 2: Literat ure review Introduction

2

4 5

11 IS IS

1. Mourn ing 16

a. Definit ion ofkeyterms

b. Psych oanal ytic perspect ive to mourn ing c. Tasks ofmourning

d. Stages of dyin g 2. Grief

a. Kinds of grief

b. Normalresponses to grief c. Resolution ofgrief

d. Unreso lved grief

16 16 18 20 23

'/'"' --' '/'"' --'

27 29

3. Factors that affectthe grievi ng process 32

a.

b.

c.

Nature of the death Attachment and grief.

Communication between role playersinthe

32 '"''"' -'-' 38

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bereavement process d.

e.

f.

Children 's understandin gof death

Religion and spiritua lity in the grieving process HIV/AIDS andbereavement

42 45 45

4. Conclusion 53

Chap ter 3: Methodology 55

1. Rati onalfor study 55

2. Aim 57

'" Design 57

-'.

4. The qualitat ive approach 57

5. Groun ded Theory 58

6. Method 61

a. Sampling method 61

7. Procedure 66

a. The interview 67

8. Data analysis 70

a. Constant comparison 72

9. Ethica lconsiderations 72

Chapter4: Resu lts 75

I. Introdu ct ion 75

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2.

Key demographics of participa nts

75

3. The mes

76

a. Griev ingas cop ing alone

76

I. Isolation

76

11. Misundersto od 77

b. Fluc tuations in grievin g 78

I. Shock!disbe lief

78

11. Guilt

79

lll. Hop e

80

IV. Anger

8 2

v. Deni al

84

VI. Expressio ns ofgrief

86

c. Anticipa tory grief

87

d. Role ofrel igiou s belie fin the griev ing process

88

e. Focuson the future 92

f. Soc ialenv ironment

9 4

I. Counse lling or help seeking behaviour

94

11. Altruistic beh aviou r

96

111. Cultural issu es

96

IV. Soci al attitudes,pressur es and restraints

98

v. Soc ialsupport

99

g. Fam ily relations hi ps lOO

I. Marita lrelationshipand the grievi ng experience

1 00

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- Bereavement,AIDS and non-AIDSrelated deaths 8

11. Enmes hedrelationship with deceased and the 103 gnevmg expenence

Ill. Routineand the grieving experience 107

h. Regrets expressed by participants 108

I. Ordina l positi on ingrievi ng 110

J. Expos ure to loss- Multipledeaths andearly death 110 expenences

k. Ability to converseadeq uate lyabout deceased 112 4. Comparisonof HIY/AIDS deaths andNon-H IV/AIDS death s lIS a. Socialsupportand stigma and its effects on HIV and 116

non-HfVrelateddeath s

b. Religi ous beliefandthe implic ation sforHIV and non- 118 HIV related death s

c. Respon sib ility andculpability inHIYinfection and 119 transmissi on

d. Cultura limp licationsfor loved ones afflicted byHIY and 121 non-Hl V related death s

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Chapter 5: Discus sion 123

1. Introdu ction p- j"

2. Majorfindings regarding mourning 124

I. Socialand relatio na laspects ofthe grievi ng process 124 a) Fam ilyrelat ions hips, attachmentandthe 124

gnevin gprocess

b) Birth orderand grievi ng 128

c) Exposureto multipledeath s 129

d) Loneliness and isolation 131

e) Grievin g as coping alone 1"j ')-

f) Conversing about the dead 134

I!. Fluct uations in griev ing 135

a) Stages⁰fbereavement 135

b) Norma land abno rma lgrief 137

c) Hope and focus on the future 138

d) Anticipatory grief 141

e) Regretsand guilt 143

f) Family reorganizationandadj ustme ntto loss 144

g) Anger 146

h) Denial 147

b. The comparison of death dueto HIVIAIDS and non- HlV/AID Sdeath in the SouthAfricancontex t

149

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l. HIVrelated stigma andgrief

14 9

Il. Gui ltat caus ing death

1 50

Ill. Religious belief and thegrievingprocess inHIV

1 50

and non- HIVdeaths

2. Conceptualoverview of results and implicationsof thestudy

1 55

3. Limitations ofthe study

1 57

4.

Concl usion

1 58

References

Appendix: Interview schedule

1 60

1 69

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Chapter 1.

Introduction.

The construct of society as awholehas neverbeen aschallen ged asit istodaybyHIVIAIDS. In relati on tosex andsex uality being inexistence from the beginningof time,HIV/AIDSis relati vely new. HIV/AIDS isspreadin g at anastounding rate.Ithasaffected thedevelopingcountriesratherthan the developedcountriesto agreater extent.Attempts tocurbor dissipate the consequ enc es,repercu ssion sand devastationthat it leaves in itstrail have failed. In relationtoHIVIAIDS,the situation in SouthAfrica is critical comparedto the rest of the world.

The impact ofAIDSonsociety iswell recogni sed and the

seroprevaIencerates speak forthemselves. At the end of2 002,29.4 million of the 42 millionadults and children living with HIVIAIDSwere locat ed inSub- Saharan Africa (Lovelife, 2001). South Africa is the epicentre of the AIDS epidemicin Africa . Approximately 23.1% of our 44.8 million peopl e in South Africaare infected with HIV/AIDS (Lovelife,2001).Hence,of these 29.4 million individual sin Sub-Sa haranAfrica infected with HIVIAIDS, 10.4 millionare SouthAfrican.

During theperiod 1994 to 200 1, there had beenan exponential growth of HIV infections in South Africa (Lovelife, 2001).Therateof infectionhad risen from less than 1% in 1990 to25% in2000(Anderson, 2000). This rate of growth

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far surpasses the average rate of growth worldwide. Not only has the infection rate increased but alsothe disease isprogressing from HIV into AIDS at a fasterrate.

In 2000,an estimated 600 000 children aged 14 years oryounger became infected with }-IIV(Lovelife,2001). Almost 9/10 of thesenew infections occurred in Sub-Saharan Africa. During 2002, of the total estimate of 2.4 million deaths due to HIVIAIDS in Sub-Saharan Africa, 550 000 were children under the age of 15 years. Most of these infected populationswho are not on antiretroviral treatments will die in the next 10years, joining the 13.7 million Africans already claimed by the epidemic (Lovelife,2001). Simply put, more children are being infected than adults and the infections are occurring earlier in the child's life.Consequently,thisstudytouches on this issue byanalysing the bereaved parents/caregiver'sresponses to their children dying asa result of HIVIAIDS. In order to gauge the difference between the bereavement process due to HIVIAIDS and the bereavement process in relation to other causes,the parents/caregivers in this study comprised of parents/caregiversof children who died due to HIVIAIDS related disease and children whosedeath was not HIV/AIDS related.

It is obvious from such statisticsthat not onlyare hundreds of

individualsbeing infected everyday, but also thousands of lives are being lost each year. Preventative educational programmes have not been very successful thusfar and are no doubt compounded by racial, cultural and gender issues (Population Council, 2001; Russel, 2000).

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To date the researcher has not come across any studies that focus on the bereavement process in relation to HIVIAIDS or ones that attempt to draw a distinction between bereavement due to HIV/AIDS and bereavement due to other causes. Studies of bereavement (e.g. Corless,Germino and Pittman, 1994) tend to focus on the description of the grieving process, books aimed at the Mental Health Professional like Worden (1982), the parent-child

relationship such as Rubin and Malkinson's study (Stroebe,Hansson,Stroebe and Schut,2001) or books that focus on cultural differences in the grieving process as documented by Rosenblatt (Stroebe et aI, 2001). Many booklets and pamphlets are available that describe the scope of the disease such as those published by Love Life or on HIVIAIDS and Gender published by the Norwegian Working Group based on the Living for Tomorrow Project on Youth,Gender and HIVIAIDS prevention (Lewis,2002).

Given the seroprevalence of HIV in South Africa,we can assume that there is a strong possibility that many members of the population have been, or will be,affected bybereavement due to an AIDS related death. Despite the extent of deaths related to HIVIAIDS,there is little evidence of studies that focus on the bereavement process in relation to HIVIAIDS or of studies that attempt to compare bereavement due to HIVIAIDS and bereavement due to other causes. An understanding of the bereavement process family and parents/caregiversof people who havedied from HIV/AIDS will lead to intervention processes and strategies being developed. These intervention

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strategi eswill take into considerationthe specifi cpsychological needsof this popul ation.

Investigatingthedifferenc ebetweenbereavem ent dueto HIV/AIDS and bereavementdue to othercausesis important in order to understand and facilitat egrieving in HIV related deaths.Itisimperativethat one

acknowled ges that while thereare likelyto be manycharacteri sticsthatare common across the grieving process, there is likelyto be many aspect sof grieving that are unique to I-IIVrelateddeaths.

The purpose of this study to investigate whether bereavement due to HIV/AIDS isdifferentfrom other forms of bereavem ent. The findings of this study arelikelyto result in deliveryof more appropri ateor tine tuned

interventionsspecifically targeted at thebereavedparents/caregi vers suffering from thelossof a loved one due to AIDS.

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Chapter 2 Review of Literature

Introduction

In life we are all forced to face two "existential dichotomies". The person going throughagrief experience has to face both.One is death and the other is the feeling that life is too short for a man to find his fullest self-realization (Erich Fromm, in Jackson,1985).Hence,manyadults may retain a fear,which could manifest as a wish to avoid both the dying and the bereaved. This discomfort maythen be

intensified whenthe death involves a child (Bertoia , 1993).

The death of any child represents a lossof future dreams, future relationships, future experiences, future fantasies which we have notyet enjoyed and are not even able to place within a context of rational discussion (Grollman, 1995; Knapp, 1986).

"Infant and child death can be viewed as moretragic and traumatic than the death of an older person because it appears to be accepted by society as less likely to occur"

(Knapp, 1986, p.14). Hence, Knapp (1986) is supported by Grollman (1995) and Kalish (1980) when he contends that it is because of these above mentioned social ideals which imply that death islikelyto occur in old age only that few normshave been developed or have survived in the past to guide loved ones,parents/caregivers in coping with the aftermath of the death of a child. In addition, he claimsthat this scenario has resulted in significant adjustmentproblems associated with the loss of infants and children for grieving parents/caregivers.

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Mournin g

Definition of keyterms

There is a distinction betweenbereavement and mourning.Inareview of the literature these terms are used interchangeably. Howe ver,for clarity it is necessary to examine theoreticaldefinitions.Kaplan andSaddoc k(1995) quotethe Committeeof Health ConsequencesoftheStressofBereavement,appointed bythe Institute of Medicine in 1982 as definin gbereave as "loss through death " and mourning asthe

"socialexpressions of grief, includingfunerals , visitations and rituals" (p. 1722).

Therefore, by defin itionhealin g fromthe loss of aloved one involves two separate but parallelprocesses,viz. coming to term s with feeling abando ned bythe loved one, whilesimultaneously rememb ering and acknowledgingthe extent and impact of the loss (Kavanaugh, 1974 ; Knapp, 1986).

Inaddition, thedictionarydefin escopin g as to strike backor fight (llson, Crystal, Wells, and Long, 1988).Hence, withreferenc eto the above -mentioned definitions of mourning,coping and grief: to mourn actively and willingly to work through thegrief istocope.To mourn is to fight back ;mourningis aprocessof purging oneselfoftheloss.It isan instancewherebywe workor fightto rid ourselves ofbitterness,anger, guilt, and sorrow. Hence, copingwithgrief meansallowing oneselfto mourn aloss active ly(Knapp, 1986).

Psychoan alyticpersp ective on mourning

From a psychoanal ytic point ofview (Freud, 1950& 1957 ), re-inves ting energy into another objecthelps in the resolution of grief.Whereas from a

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psychoanalytic perspective, it may well be that identification of the loss of an object is a general condition under which the ego will relinquish itsobject. "Apparently for a normal person it is easier to loosen the ties with an internal representation ofalost object than with an external object. Hence,the establishment of an internal

representationof the lost object is a means of facilitating the final loosening of attachment to the deceased individual. Consequently, mourning consistsof two acts, the first isan establi shmentof an internal representationof thelost object, while the second is the loosening of the binding to the internal representation of the lost object"

(Fenichel (1945),in Kalish, 1980, p. 74). Freud's (1950)notion on the looseningof the cathexis to the internal object differs from that of Fenichel (1945,in Kalish,

1980). While Freud views the internalization of a lost external object aspart of the mourning process,he contends that through the processof catharsis,the energyfrom the introjected object is transformed or transferred into another object rather than

"loosened" as in the case of Fernichel (1945). Hence, Freud takes the

psychoanalyticaldescription of the mourning process one step further in that he foretells the likelihood of the individual' sdevelopment of a new attachment.

"As the first involves the effort to destroy the pain of grief by a maneuverthat

internalized, incorporated and identified with alost loved object so the second seeks to destroy the pain ofgrief by an activeeffort to externalize,project and substitutean image or an object forthat,which has been lost" (Kalish, 1980,p. 75). Hence,

according to Kalish (1980), the grieving person may seek to invest his emotional capital insomething or somebody else, as well as form an internal representation of the lost external object.

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According to Freud (1957) being emotionallybound to someone means investing libido in that individual. Freud (1957) contendsthat the essence of grief work is to reclaim libido from the deceased person for subsequent relationships and commitments. "To the extent that a bereaved individual is ambivalent about the lost partner, he or she may have trouble accomplishing decathexis" (i.e. doing grief work) (Shaver,in Stroebe et aI,2001,p.71). In addition,anger may be contributing to the continuation of ambivalence and feelings of guilt toward the deceased person.

In regard to children, many theorists (Kaplan and Saddock, 1995;Nagera, 1970;Wolfenstein, 1966) maintain that children are unable to fully mourn major losses.The major reason for this argument rests on the psychological and emotional maturity of developing children. Nagera (1970) described how the child's proclivity to usedenial, his/her inabilityto tolerate the prolonged painful affects of grieving, their greater degree of ambivalence in object relations, and their frequently distorted concept of death because of concreteand egocentric thinking all prevent the

resolution of mourning in childhood losses.In order to mourn a person's death, a child must distinguish that person asa separateand unique individual and must recognize the permanenceof the loss. However,according to Bowlby the maturation required for this usually only achieved by age two to three (Bowlby, in Leon, 1990).

Tasks of mourning

Kalish (1980), Kaplin and Saddock (1995),Knapp (1986), Randoo (1993) and Wolfelt (1991) maintain that a broad distinction can and should be drawn between

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mourning as a self-limited, healing process in which a resumptionof prior functioning isachieved and the multiple forms of unresolved grief,either as an arrest at one of the phases of bereavement (for exampl e, inhibited grief or chronic mourning) or as a pathological variant (for example,hypochondriasis), in which serious impairment in functioning persists(Bowl by,in Leon, 1990). Consequently,while the manifestation of the mourning and bereavement can and does differ among individuals, it is

imperative that the individual progressesthrough the different stages of the grieving process in order to resolve their grief. Unresolved feelings stagnate the individual, causing him or her to fixate at the point of most dissonance. Inso doing, the individual may severeother relationships or adopt maladaptive behaviour patterns, which could have negative implications for other family members (Alexander and Alderstein, 1958; Brown, 1999; Fogarty,2000; Grollrnan, 1995; Kalish, 1980;

Kaplan, 1971;Knapp, 1986; Matinson, Gillis, and Colaizzo, 1990; Parkes, I972a, in Brown, 1999;Saukes, 1987; Spinetta, 1984).Hence,the maladaptive responses of the parents/caregivers can have far reaching consequences for the surviving offspring.

Worden (1982, 1991) suggests that there are four tasks of healthy mourning.

They are: - To accept the reality of the loss; to experience the pain of grief; to adjust to the environment in which the diseasedis missing; to withdraw emotional energy and to reinvest in another relationship and while the fifth task of grief taken from Wolfelt (1988) is to convert the relationship with a deceased from one of presence to a relationship of memory or according to Freud (1950& 1957) to re-investthe psychic energyin internal representations.

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Dane and Miller(1992), Kavanaugh (1974) and Worden(1982 & 1991) describe different stage sofgrief. Dane etal (1992) refer tothe first stage bein ga period ofshock,numbnessor disbeli efand stages 2- 8 dealingwith resolvingrelated emotionssuchas pining,dep ression ,guilt and anger.Kavanau gh (1974) identified sevenstages describ ed as shock,deni al,disorgani zation,violent emotions,guilt,loss and loneliness and relief and reestablishment. Dane (1992) claims that the above- mentioned stages are likelyto have run its course after approximatelyone year or moredo not have a fixed sequenceand noteveryonegoesthroughall the stages.

However,Kavanaugh (1974) claims in reference to theabove-mentionedstage of loss and lonelinessthat theresolution of this stage can last"froma year to a lifetime"

(p. 142).

Stage s of dying

Two aspects of thedyin g proce ss seem to be important in conceptuali sing individual griefprocesse sand responses. One is the stages that the individual passes throughwhile in theprocessof dyin g (Kalish, 1980;Kavanaugh, 1974; Knapp, 1986; Kubler-R oss , 1969; Randoo, 1993;Worden, 1991;Wolfelt, 1991) while the other is acknow ledg ing that the dyin g individual is not onlyinvolved with his own stageof grief but also those of his loved ones(Grollman, 1995;Kavanaugh, 1974;Fogart y, 2000).Hence,the dying individualcarries a dual burden. That is theyhave not only the burden of dealing with theirown grief but alsohave to endurethe unfolding of their dying lovedones acceptance of his impendingdeath (Brown, 1999; Kalish, 1980;Knapp, 1986).The stages of dyin gtheorized by Elizabeth Kubler-Ross(1969):

denial,anger,bargaining for life, acceptance,and detachment (Bracken, 1986)sheds

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some light on basic states that an individual mightpass through. Howev er, Kavan augh (1974). in discussinghis conceptionof agrieving processpointed out that the seven stages heenvisioned closelyparall eledthefive stages observed by Elizabeth Kubler- Rossin her workwith dying patients who were aware oftheir impendin gdeath.

However,unlikeKubler-Ro ss's stages,theKavanaugh stages seem more relevant to thegrieving experiences of thesurvivorsratherthan to those who were themse lves dyingin that theyallow for the surv ivor to resolvethegrief reaction and moveon to

"re-establish" anew,post bereavem entexistence. "Theseven Kavanau ghstages combine into six forthe purpose of thisdiscussion are defin ed as: 1.shockand denial 2. Disorganization3.Violent emotions 4.Guilt 5. Loss and loneliness and 6. The twin stages of relief andreestablishment" (Knapp, 1986,p.127).Thereishowever,

controversyoverthedifferent stages.

It isreported that term inal adults and children passthroughthe five (5) stages of acquisitionof factual information during thegrievingprocess (B1 uebond-Langner, in Bertoia. 1993). Thestages theypassthrougharedescribed by Bertoi a(1993)as:-

1. Recognition that it is aserious illness, 2. Interest in thenamesof drugsthat they would have administered and thepossible sideeffects.3. Purposes of treatment and procedure,4.Disease as a series of relapsesand remis sions (- death) and 5. Disease as aseries ofrelapses and remi ssions (+

death) (p. l l) .

Howe ver,notallchildren will passthrough all these stages or will compl ete the stages in the same order.

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According to Bluebond-Langner (1978 ) individu alsrequire achange in their personal perception oftheir individuallife circumstancesin order to resolve theirgrief reaction. Bluebond-Langner (1978)contends that hospit alized,terminallyill children progressthrough five stages of changing self-concepts, finally viewing themselvesas dying. Bluebond-Langerfound that what the children were able to communicate depended strongly on the perceptionsof adult expectations of themand on what any givenadult could tolerate (Blueblond-Langner, in Bertoia, 1993).The five (5)stages of change in concept he describes are"1.Recognition bythe child that s/he is

seriously ill,2. Recognitionbythe child that s/he isseriouslyill - but willget better, 3. Recognition by thechild that s/he isalways ill- but will get better,4.Recognition bythe child that s/he is always ill- and will neverget better, and 5.Recognition by the child that s/he is dyin g- hence,terminall yill" (Bluebond- Langner, in Bertoia, 1993, p. 11).

Kaplan and Saddock (1995) concur that different players in the scenario passing through different stagesof different cyclesat different times further complicatethe dying process resulting in parallel grief processes. Hence, in many instance s,due to anticipatorygriev ing,a surv ivor may emotionally detach from the dyingindividual at a time when heor she may most need them (Grollrnan, 1995;

Kalish, 1980 ;Knapp , 1986).

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Grief

Kinds ofgrief

Knapp (1986) contendsthat in relationto adying child,especi allyone whose death is slow and prolonged,parents/caregivers are forced intothe situationofgiving care andcomfort over theperiod ofseveral month sto achild theyknowhasno future.

This scenario maylead todifferent forms ofabnormalgrief reactions (Natterson and Knudson, 1960;in Kalish, 1980): anticipatorygrief(Kalish, 1980; Knapp, 1986);

compl icated grief(Wolfelt, 1991);delayed mourning andabsent mourn ing (Randoo, 1993);andwhat Kaplin and Saddoc k (1995) call pathological griefor impacted grief, Knapp (1986) calls shadow grief and Kavanau gh(1974) and Wolfelt (1991 )referto aschronicgrief.

Normal Responses to grief

Researchers suchas Knapp (1986),Grollm an (1995), Kalish (1980) and Kaplan (1971) expressthe opinionthat anoverwhelming characteristic of all parents/caregiversthey havecome acrosswho have suffered the lossofachild is likelyto be expressed in the form of aneedthat makesa lossofachild different from other kinds oflosses. Thedefining characteristic ofgriefdueto the loss ofa child isin thatthisneedisdescribed asaneed or desire toneverforget or always rem emberthe decea sed."They fearthatthey will forget thesight ofthe child'sface,the sound of his/her voice, thetextureofthechild'shair,theuniqueness ofthehands,even the child'scharacteristic sme ll. Parentsseverely missthese sensualexper iencesand eventually come towish to retain them in memori esaslong astheylive"(Knapp,

1986, p.29).

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G~jlt was one characteri stic that was commonly associatedwith the grieving process (Fogarty, 2000; Kalish , 1980;Kavanaugh, 1974;Knapp, 1986;Randoo,

1993). Knapp (1986 )found in his study ofbereavedparents/caregiversthat all parents/caregiversindicated that they felt and experienced guilt at some point during bereavem ent period. He goeson tosay that parents/caregiversare likelyto"feel guilt thatthey might again come to enj oy life that they might achieve some degre eof normalityin theirlife patterns.Many actua lly fear thiseventu alrecover ybelie ving that it may implythattheythought the death of theirchild didn't matter. Itwas as if theywere intentionally hanging on to these negative feeling as an assurance that their child wasimportant"(p. 144).Knapp issupported by Grollman (1995) when he goes on tosay that some parent s/caregi vers eventually do not fear death or dyingand contemplate theirowndeath as away of legitimi sing the loss.

Asmentioned earlier,experiencing feelings of guilt isa common reaction to the death ofa loved one(Fogarty, 2000;Kalish, 1980;Kavanaugh, 1974; Knapp,

1986;Randoo, 1993). However,Kalish(1980)contendsthat insome individu als,an individu alexperiencinguncertaint yand fearcan easilystimulate the feelingsof guilt.

This individual maythen become excess ivelyvulnerable to these feelings of loss.

This vulnerability to his or her own strong emotional reaction maythen result in a pathological response to thegrief experience (Kalish, 1980), rather than substitution of the deceasedlovedone asmenti oned previou sly.The grief experi ence maytrigger a variety ofsuppressedemotional respons es and feelingsrooted in preconsciousor unconscious levels of their mental life(Alexander and Adlersten e, 1958;Grollman,

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1995;Kalish, 1980;Knapp, 1986; Nattersonand Knudson, 1960;Parkes, 1972a,in Brown, 1999),insome cases,thismay includ etheassumption that the individual is incapable ofgrievingsuch aswith thevery young ,theelderly, the mentally retarded , and thementallydisturbed(Randoo, 1993). In theseindividuals,theemotion that is inarticulate may result inactions thatdo notserve the best interestof the person involved.Hence,in order to deal with theemptinessofthefutureproduced bythe death ofachild these parent s/caregiversfill the voidwith theimages of that child they oncehad, with thought,memories and opendiscussion,tothepreclusi on of all else.

Only in this way does such a lossbecome arealit y to them (Kna pp, 1986).

According to Knapp (1986)angerat the deathofachild manifestsitself differentl y with mothers and fathers.Heclaims that most fathers' often-direct anger outand mothersoften turn anger inward. Ineither case,the mani festation of the parents/caregiver' sangeroften takesthe form of sarcasms,silence,withdrawal, demanding loveand affection or at other times may be directed atother children. In addition, Knapp says that this anger canalso be transformed into g~iltor self-blame for not having paid adequateattention toearly warning signsor not having gone soo ner to seek medical advice(Knapp, 1986).The death ofachild can caus ealread y existing problems within themaritalrelation shiptobecome magnified (Kalish, 1980;

Kaplan, 1971;Knapp, 1986). According to Knapp (1986) on average 30-70% of marriages that suffer the death of the child end in divorce. The end of the relationship usually comesduringthe stageof loss and loneliness,thusdivorce is seen no asa cause of marriage dissolutionbutas symptom of the family' s inabilityto deal realisticall y with this painful phase in a grieving process (Knapp, 1986).

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In the terminal stage of the illnessparents/caregivers need to reorient themselvesto the changing needs of their dying child. Asis the case with adults, children needs to be given time to prepare for their approaching death. "It is important to offer emotional support and guidance and share emotional concerns with the dying child. Many parents/caregiversreveal that they allow the role reversal to take place, many begin to think of their child as theirmentor or teacher quite the reversal of the parents/caregiversto child relationship and theyallow the child to control life segments of their lives.These changes can occur even if they areyoung children"

(Knapp, 1986, p.49).

Children, likeadults,resort to familiar patterns when theyhear bad news or are anxious or afraid. Play is a familiar activityutilized by children when stressed.

Play may be a means of returning to an activity that is familiar in an attempt to seek some control over a situation that seems so far beyond their control (Grollman, 1995).

Leon (1990) claims that the guilt depression and rage resulting from the bereavementcan be perceived as being so crushing, unbearable and ultimately traumatizing that long-term coping with this loss appears to depend more on the opportunity to gradually accept this brutal reality through anticipatory grieving before the actual death than any other factor.

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Resolution of grief

According to Kalish (1980), an important component in the parents/caregivers psychological development in relation to the adequate resolution of grief is an

adequate attitude towards life and death.He contends that her behavior will manifest in the unconscious and preconscious levels of her mind and that these behaviors will impact on her day-to-day relations with the child. "Hence, the very nature of her biological relation to the child is a binding tie that is characterized by emotional content. Security in this relationship is basic to the development of emotional security.

Ultimately,emotional security is important for effectively doing the work of mourning" (Kalish, 1980, p.36).

It is because of the above that grief states, irrespective of the nature of the loss, are not ended by replacement of the lost person (Fogarty,2000; Randoo, 1993; Weiss, in Stroebe et al, 200 I; Wolfelt, 1989;Worden, 1982). Weiss's(2001) statement conflicts with the psychoanalytic view in that he believes that a replacement figure may reinforce the very mechanisms and maladaptive behaviours and thoughts that are causing the bereaved individual to remain stuck at a certain stage in the grieving process. Parkes (1972a, in Brown, 1999) agrees with Grollman' s (1995) statement

"...in response to a death children experience the same reaction that adults do but

these reactions are expressed in different ways" (p.66). Hence,in light of Goldman' s (1995) remark we can argue that although much of Fogarty's work is extracted from the experiences of children much of what he describes can be applied to adults as well. Fogarty (2000) disagrees with Weiss. He contends that the need to"recreate situations and experiences"(Fogarty,2000,p.13) that include the deceased individual

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have a purpose in that "the attempt to recreate isdesigned to fail" (Fogarty, 2000, p.15).Bereaved individual sneedtoexperience and then say goodbye to theirbeloved,

".

secure in theknowled gethatthere isno return , and nothingwill everreplace their lost loved one(Foga rty, 2000;Weiss,in Stroe be etal,200 1). Hence, Fogart y (2000) claimsthatthe failure to resurrect experiencesandsituations resultsin the

maximization ofdenial. The mostagonizing feature of thisproces sthat is,evoking visceral memori es of the decea sed isa keyelementin resolvin ggrief (Fogarty, 2000;

Grollman, 1995;Kaplan, 1971;Leon,1990). According to Knapp (1986) and Kavanau gh (1974)the refusal of parents/caregivers to talk about thedeceased child resultsin the extensi onof the grieving process overagreater period of time. In addition, the endeavour to avoid discussi onregardingthe death can also lead to the withdrawa l from physical contact with others (GrolIman, 1995)and to a tendency on the partof others to avoid the bereaved parents/caregivers(Kavanaugh, 1974), ultimatelyresult ing in isolation and the lossofsocial support.

Kaplan (1971)goes as far as saying that the refusaltoexpres sp~nful

emotionscan have detrim ental consequences forthemarital relationship.An individual' s inclinationto propagatethe falseassumption that one can continue the relationshipwith thedeceased as done previousl y,prevents theopportunitytoevoke , savour and then relinquish preciou smemorie sof the deceased (Stroebe et ai, 200 1).

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Unresolved grief

In normal grief reaction symptoms such as confusion, disorganization,

~.,

apprehension and fear are present. However,these reactions are temporary and are worked through asthe individual faces realityand deals with it even though the process of doing it is painful (Grollman, 1995;Kavanaugh, 1974; Knapp, 1986;

Natterson and Knudson, 1960, in Kalish, 1980). In abnormal grief the loss may serve as a precipitating factor that releasesunconscious fears related to unresolved early experience (Kalish, 1980). Then,the apprehension and dread refuses to be focused at the actual experience that precipitates it resulting in defused and disorganized

expression.Normal griefand anxiety are clearlydifferent from abnormal grief asthey relate to the reality factor. The reality of the loss maybe denied or the resulting emotions projected resulting in a grief response that further complicates the mourning process. Hence, abnormal grief and anxiety may turn into a chronic emotional state (Friedman et al, 1963, in Kalish, 1980; Kalish, 1980;Kaplan, 1971; Randoo, 1993;

Wolfelt, 1991).

The dynamics of the grief reaction maybe learnt in at least four ways, firstly by the personality structure of the individual in relation to conscious and unconscious processes within the psycheof the individual (Alexander and Adlerstene, 1958;

Grollman. 1995; Kalish, 1980;Knapp, 1986; Natterson and Knudson, 1960;Parkes, I972a, in Brown, 1999), secondly by the social factors that are at work about the individual such as social support (Grollman, 1995; Kalish, 1980; Knapp, 1986), qualityof marital relationship (Kaplan, 1971; Knapp, 1986),thirdly bythe importance of the deceased in the life system of the individual (Bowlby, 1969;Grollman, 1995;

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Kalish, 1980) and lastly by the value structure of the individual such as the setting of priorities and the altering of value systems (Kalish, 1980; Knapp, 1986).

Bereavement researchers such as Leon (1990) have identified three factors associated with unresolved mourning: ambivalence toward the deceased.. . extreme dependency on the deceased, and the sudden unexpected nature of the deceased. Karl Abraham comments in Freud (1950) that in a normal person the process of

interjection is set in motion by real loss to preserve relation with the loved object to compensate for the loss but is never unaware of the loss. When the process is unconscious and not understood then the result within the personality is likely to be abnormal and show up in specific problems in behaviour (Freud, 1950).

Therese Randoo (1993) describes six responses regarding complicated

mourning.They are absent mourning (as if the death has not occurred at all),delayed mourning (full or partial mourning is eventually triggered), inhibited mourning (the mourning process consciously or unconsciously becomes and remains restricted to various degrees),distorted mourning (extreme anger or extreme guilt), conflicted mourning (arisesafter a loss of highly trouble and conflicted relationships after brief absence of grief even relief the mourner experience severe guilt,self-reproach as well as mixed feelings that characterized the premorbid relationship, unanticipated

mourning (unexpected death or terminal illness including the main complicated issues associated with unanticipated loss) and chronic mourning (acute mourning that persistsand doesnot abate)(Fogarty,2000).

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Wolfelt (199 1) has offere d the following typol ogy ofcomp licated mourning.

1. Absen tgrief:defi nes abse ntgriefas, an absent grie f no appare nt feelin gs of griefareexpresse d.

2. DistOlied grief:AlanWolfelt(1988) defin es adistorted griefas distortion that occur sinoneabove the normal dimen sion sofgrief. This distortion mayprevent the grief processfrom unfo lding and the perso n oftenbecomes a distorted dimension ofthe grief.

3. Conve rtedgrief: The person demonstrate sbehaviour and symptoms thatresult in personaldistresshowever he orshe isunableto relate their presenceto the loss.

4. Chronicgrief, defin ed aschronic griefas aperson dem onstrates a persistent pattern of intense griefthat doesnot result inappropriate reconciliation. Essentially the mourner atte mpts to keep the perso nalive

. /

(Fogarty,2000).

Chronicgrief maybe likened insome ways to shadow grief(Fogarty,2000;

Knapp, 1986). "Shadowgriefwillvary inintensity depending on theperson and the unique factors invol ved, it ismore emotio nal forsome than for others .Ifthe shadow griefexists the individual canneverrememberthe loss without feeling some kind of emotionalreacti on regardlessofhow mild. The differencebetweennormal grief and shadowgrief is simi lar tothe difference pneumonia and the common cold. The latter is less seriousand lessdestru ctiveto lifemore often 'nuisance' than anything else"

(Knapp, 1986,p. 41).

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Another more recent category of grief reaction is referred to as

disenfranchised grief Disenfranchised grief is the grief thata person experiences when there occurs a lossthat is not or cannot be openlyacknowledged, publicly mourned or socially supported. (Fogarty,2000). Doka (1989) lists three types of disenfranchised grief:1) The relationship with the deceased is not recognized, for an example an extramarital lover or a homosexual partner, 2) The loss is not recognized, as the loss is not defined by the society as significant,example death due to

HIV/AIDS infection and 3) The griever is not recognized,a person may be socially defined as not able to grieve,and an example is the very young, the elderly,the mentally disturbed and the mentally retarded (p.79). This form of grief has become evident in recent years due to the stigma attached to deaths due to HIV/AIDS.

Factors that affect the grieving process Nature of the death

The grieving process appears to be affected by the nature of the death

(Grollman, 1995;Kavanaugh, 1974;Knapp, 1986). One of the most serious obstacles to the successful resolution of grief is the suddenness of object loss (Kavanaugh, 1974). Unexpected death has been described asmore traumatizing than anticipated bereavement (Kavanaugh,1974;Knapp, 1986;Parkes, 1986;Schoenberg, Carr, Kutscher, Peretz and Goldberg, 1974), much more likely to be experienced as over whelming loss, followed by potentially long-term maladaptive defences and pathological variantsof grief. These findings have been frequently reported by bereavement researchers (Parkes, 1986;Volkan, 1970,in Leon, 1990) and reveal a statistically significant increase in psychiatric morbidity among those who were

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suddenlybereavedcomp ared to those whoexpected thedeath (Lundin, 1984,in Leon, 1990).Anticipatorygrieving,mournin g anexpected death often results in less

devastatin g griefand a more benign outcome post-de aththan doesasudden loss (Bourke 1984, Rando 1986a,in Leon, 1990).

Attachment and grief

Attachment theory posits a human instinct to form strong, persistentaffect ional bonds (Kaplanand Saddock, 1995).John Bow1by's(1969) interestin attachment was originally sparkedbynoticin gtheeffects of maternal losson children' slater psychopathology and delinquency.Hence,attachmenttheory was designed to explainthe psychological impact of loss (Shaver et ai, in Stroebeet aI, 200 1). Consequently, Bowlb y's interestin the effects ofloss shown in

psychopathology is notsuch a far cry from the impact of losson maladapti ve beha viour.

Grief is a natural reaction to loss.Attachmentstyle ispivotal to the resolution ofgrief(Becvar,200 I). As griefisa social group experience, it involvesthe

relationship with anotherperson or persons(Jackson, 1985).Hence,before the impact oflossand grief can be fullyunderstoodthe meaning of attachment needs to be explored. Bowlby's (1969)attachment theory describes adrive to establish

affectionate bonds with othersand a grief(response) that occur swhenthesebonds are threatened or severed .Bowl byargues thatattachment comesfrom a human need for security andsafety,which is prevalent throughout life.However hesees attachment as aextending beyond the physical need of a young child,forexample for food warmth

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and comfort. The quality for attachm entdeterminesthecapacityofa child toestablish affectionate bondslater in life (Bow lby, 1969).

John Bowlb y' s (1969; in Parkes,Laungani and Youn g; 1997) attachme nt theor ypoints totherebeing different attachm ent styles thatleadtodifferent attachment behaviours. A natur alresponseto thelossofan attachment bond is separationanxiety,whichgenerates intense but predictabl e behaviour geared to recoup orrevivethelost relationship (Kaplan and Saddock, 1995).For instanc e,an insecurely attached child can either become very clingy or appear veryindependent.

Bowlb y(1969)describes bereavementin relation to stages and the amount of time frame. He states that the first stage,shock and denial lasts a number of weeks, yearningand protest, also lasting a number ofweeks, despair, which may be accompanied by somatic and emotional upset and social withdrawal, lasts seve ral months or even years and the last being gradual recovery which ismarked by increased well-being and acceptance of loss.

Accordingto Ainsworth,Blehar,Watersand Wall (1978),the three attachment styles ,referred to byBowlb y, aresecurely attached,avoid antand

ambivalent.Ainsworth delineatesfour patterns of attachment(Ainswo rthet aI, 1978) they are:

Secure- (Ainswo rth category B) parentswhose sensitivity and

respon sivenessto their infant'sneedsfor securityand asafe base from which to explore the world are adequat e,have children who tolerate brief separations

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withoutgreat distress,and respondrapidl yto their mother ' scomforting behaviour when she returns;insecure- (anxiousambivalent- Ainsworth categoryC)motherswho areoveranx ious andinsensitive to their infantsand discour age exploration have childrenwhoshow great distressduring periods ofseparation and who bothcling to and angrilycryat their mother when she returns;avoidant- (Ain sworth categoryA)children whose mothers cannot tolerat eclosenessand punish attachm ent behaviour learnto inhibit clinging and crying. When theirmotherleavestheroom theyappear detach ed and uncaring. When shereturns they often ignore or turn away from her. However, they show evidence of physiological arousal in a rapid heart ratethroughout theperiodof separation and disorganized/disorientated (Ainswort h' s categor y D) thesechildrenexhibit a wide varietyof disorganiz edbehaviour when separated.They often 'freeze' and may showstereotyped behaviour after motherreturns.

These styles of attachmenttend to persist over time. Unlesschallengedby a stronger bond or attachment it is likelyto aff ect ones respon se to loss over time.

Recentwork has shown thesepattern sof attachment in adultsas well.

Parkes (Parkes, 1986;Parkes, 1987,in Currer, 200 1) reiteratesthis thought by stating that as the bondsof attachment are broken ,there comes a reali zation thattheir basic assumptions about themselve sand about the world will haveto change and this leadsto a time ofsocial withdrawal for manypeople while their world isbeing assessed (inCurrer,2001).Parkes believesthis to beespecially true in regardto

"psycho-social transitions". Psychosoci altransitions refer to the kind of lossthat

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brings aboutprofound changes in the social environment of that individual such as the loss of a child. This scenario requires people to undertake a major revision of their assumptions about the world (Currer, 2001). Parkes further posits that these changes are lasting rather than transient,and takesplace over a relatively short time so that there isno time for preparation. The effect of this on the child is that indicated by Kaplari's (1971) study of families ofleukemia victims where effective coping by the useof open communication helps in the resolution of the grief reaction. Asthe family comes to accept the death their emotional involvement diminishes or become

intellectualized and defused whereasthe medical stuff may be caught up in the drama of the death and their emotional investmentin the patient mayincrease(Natterson and Knudson, 1960).The turning away of the family membersat this time in a

psychological as well as the physical sense can create a void for the patient at the time when he needs the support,comfort and reassurance of his family.Thephenomenon of anticipatorygrievecan serveto block such support. The absence of tearsor expressions of concern may compel the patient to grieve not only for his own death but alsofor the seeminglossof his family'slove(Kalish, 1980). Parkes resolutionto this phenomenon isthat preparation for the death and support isvital (1993, in Currer, 2001).

In addition, one is likely to prohibit and hinder the progressof the other surviving loved ones. Hence,one isalways bound bythe grief,alwayslooking for the lost loved one,and consequently,alwaystrying to replace the loved one by moulding othersto be like him or her or by trying to force others to conform to predetermined

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agendas.This phenomena iscalled the 'continuing bonds' theory- where the individual constructs continuing mental relationships with deceased attachment figures(Shaver, in Stroebe et al, 2001). The Dual ProcessModel (Stroebe,2001) isa simi lar model to the Continuing Bonds Model (Shaver. in Stroebe et aI,2001),in that it focuses on the nature and extent of the bond betweenthe surviving individual and the deceased. The Dual Process Model explores the parallel processes of resolving feelingsofabandonment and experiencingthe feelingsof loss while the Continuing Bonds Model explores the development of the emotional bond over time. Secure people are expected to be more likely and able than insecure individuals to solicit and benefit from social support following a loss, be more optimistic than insecure

individualsand to be better able to move between "loss orientated" and "restoration orientated" processes delineated in the dual-process model of copying with

bereavement(Shaver ,in Stroebe et al.200 1, p.80). Inorder to facilitate the grieving process,the attachment style of the bereaved individual needs to be identified and addressed (Bowlby, 1969). A halt in the grieving process can indicate a maladaptive attachment style (Shaver ,in Stroebe et al,2001).

The time frame governingall his or anyother researcher'sstages appear to be speculative and the presence of any particular stage subjective.Although all the given stages maynot be experiencedand the process can take from a few week s to any number ofyears to be completed,it isvital to acknowledge bereavement as a painful process and that acceptance of the loss, while not a cure-all, is a turning point.

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Communication between role plavers in thebereavementprocess

Copingwith emotionalstrain is dependentupon the individual's psychological reaction to the grief (Kalish, 1980) as well as social response that he or she receives or responds to (Brown, 1999; Fogarty, 2000;Grollman, 1995; Kalish, 1980; Knapp,

1986). In our society people are not prepared socially with respect to dying, as a result, the dying process is managed clinically and guided by policy and procedure is utilized in managing the death. These bureaucratic structure and goalsthat are

incompatible with the process of dying (Kalish, 1980).Due to the inadequacy of the above-mentioned socialization process, "parents who have difficulty responding to each others' needs will approach the death of a child with a sense of loneliness and isolation and they will findthemselvestotallyill prepared for this tragic event when it occurs"(Knapp, 1986, p.51).

"Even though on the averag etwo children die everyda yfrom parental abuse the consistent view is that most parents are preoccupied with child rearing. They pamper their children and take great pride in their development. Theytake the task of parenthood very seriously" (Knapp, 1986, p. 120). Following the death of a child the agony within the family is pervasiveand profound. For parents/caregivers a child's death representsa lossof their hopes,their dreams and their future.Theyare faced with emotions so intense as to be debilitating. For other children a lossof a sibling means a loss of playmate, a confident arrival,a role model,a friend but in case of a sibling lossa children'sexperience may be further complicated by the failure of those around him or her even to acknowledge that she/he has suffered a significant loss (Grollman, 1995).

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Reaction sdueto impending separationfrequently bring about awkward communicationand evenwithdrawals arepart of those emotionallyattached to a dying person (Nattersonand Knudson, 1960). Hence,grief, which isunexpressed or unshared, cutsoff an important lineof communication (Brow n, 1993; Fogarty, 2000;

Grollman, 1995;Kalish, 1980; Kavanaugh, 1974; Knapp, 1986;Parkes, I972a).

Childrencan even delaytheir own grief feelin gthat theyneed to support others (Grollman, 1995). Hence ,the expression of fearand concern is crucial for a dying person.These are means of sharing thenumberof importantfeelin gs that ease a process,tosomeextent helpin greplacefeelingsof isolati on and unexpressed grief (Kalish, 1980).

Bowlby(1969), Brown (1999), Fogarty (2000), Grollman(1995), Kalish (1986),Knapp (1980), andNatterson and Knudson (1960) concur that the impending death of a child hasaprofound effect on the relationship between the child and hisor herparent s/caregivers.For exampl e,in some instance s, when problems arisewith communication,the child maytrytoprotecttheparents/caregi vers by mutual pretense (Be rto ia, ]993)about the impendingdeath.Parent s/caregiversmay spend a large amount of time in thepresence of childrenconstantl yassuringthem that it'sall right to feelthewaythey do (Knapp, 1986)when faced with a crisis such as aterminal illness. "The crisis of life invite thistype of significantcommunication ,butwhen bereavement comes it often dislocates the process by removing the one with whom communication hasbeen most effective.So theproblem of restoringcommunication may be doubly difficult" (Jackson, 1985,p. 232). Hence,social support structures

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may become scarce or unavailable (Kalish, 1980). However, whenever childrenare suppressing or expressing their feelings they are neverthe lessgrievingand are

affected by their parents/caregiver'sexpression of their own sorrow (Grollman, 1995).

Kaplan (1971) in a study of coping patterns in 50 leukaemia families described effective coping as characterized by open communication and discrepant coping,in which communication between parents/caregivers isrestricted. Kaplan suggested when channels of communication remain between the parents/caregiver's feelings of grief,concerns ,fears etc.,when readyfor expression may be shared openly with a spouse. The prohibition or expression of grief then compromises the ability of the

family members to resolve important coping tasks and may have long-term

detrimental consequences for the marital relationship (Kalish, 1980;Kaplan, 1971;

Knapp, 1986). The erosion of the marital relationship may hinder the provision of social and emotional support between parents. Social support is an important component in the successful resolution of grief (Kalish, 1980).

In order to avoid a complicated or pathological grief reaction the family must have access to sufficient psychologicaland supportive resources in order to overcome the effects of the stressful event. Knapp (1986) cites that McCubbin and his colleague cite four kinds of resources available to a family, which are likely to moderate the personal effectsofstressful encounters, these are familymemberspersonal resources:

defined as financial, educational, health and psychological; the family system internal resources: defined asintegration and adaptability;the social support systems

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available; and coping techniquesor mechanism sthat may be availableand operational.

Glaser andStraus (1967)describe aset ofawarenes s-and-interaction types in relation to bereavement. These four basic awareness typesemerge from the possibl e combinations of awarene ssand communication patterns ,they are:

1) Closed awareness- dying person doesnot realizethat heorshe isdyingand will not betold,

2) Suspectedawareness- thepatient suspects that the truth isnot beingtold but will not betold,

3) Open awarene ss - both the patient and others are willingand able to share their knowledge and concerns and,

4) Mutualpretence - the patient and visitorknow about thedeath but both pretend that theydo not know ...others appearto be attributing theirown anxiety to the patient... manyterminally ill

people,conditioned bytheirexperiences with the illness and supported bytheirownmaturit y,aremoreprepared than their interactantsto face the facts ...the underlying reality is oftensufficiently unclear, uncertain and unstable,suggesting that nobod y'sversionof thetruth is beyond question (Kastenbaum, 1998, in Kastenbaum,2000).Itistherefore

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clear that theinteractions between those around the dying individual play a part in helping or hindering that individual's acceptance of his or her impending death.

Children's understanding of death

In order to foster communication and understanding between the

parents/caregivers and the dying child it isimperativethat we understanddeath from the perspectiveof the child. The findingsofNag y's(1936) classic research on children's conceptions of death provided evidence forthe three alternate modes of understanding bereavement in children. In the first stage between the ages of three and five years children do notdistinguishbetween death andseparation; in the second stage between five and nineyears, death is conceived as a permanent state;and in the third stage at 10years and over children understand that death is real,inevitabl eand irreversible. Although this research was criticized for not taking culture and previous experienceor loss into account, research conducted since this study appears to reiterate Nagy'spoint ofview (Bluebond-Langner, 1978).

According to Bluebond-Langner (1978), children as young as 18 months can understand that theyare dyingand that the process cannot be reversed. Bluebond- Langner contends that the child's self-concept affects the bereavement processof the child. He cites five stages in the child's understanding of his or her illness and the terminal nature of the illness.They are,seriously ill,seriously ill but will get better, always ill but will get better,always illand will neverget better and dying. Hence, Bluebond-Langner also subscribes to Nagy's notion of children being able to

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understand theinevitab ility and permanence of death .However, both the above- mentioned authors do not stipulatethe age at which this becomespossible for the child.

Otherresearch ersposit that children who are dyingoften know it without askin g(Bach, 1969;Bertoi a, 1993; Furth, 1981; Keipenheuer, 1980; Kubler-Ross, 1983 and Siege l,1989 ), without being told even if theyare young. Even before the children areconsciouslyaware of theirprognosisand revealin git in theirsymbolic verbal language,their art indicates apreconsciou sknowledge of their illnessand outcome (Susan Bach,in Bertoia, 1993 ).Theparents/caregivers maynot knowhow to respond tothisnewchild capableof thinkingand talkingabout his/her condition in a veryadult manner. Thechangesmay beso great that theymay disturb the

parent s/caregivers (Knapp, 1986).

Brown (1999), Fogarty (2000), Grollman (1995) and Kalish(1980)agree that dying children tend to display wisdomand understanding faradvanced from what we would normall yexpect. According to Knapp (1986) as death approaches there is usuall yno hysteric aloutbursts, no agitation, no hostility rathercalmnessseem sto overtake the dying individual along with the sense ofrevered wisdom and maturity.

Suchchanges have been noted in children as youngas three years ofage."Children belowfiveusually view deathasreversible, a departure or separation.Children from about six to nine or ten conceptualizedeath asan inevitable external process,which most often result s from theaction of theother individual sor purposesforcese.g. God and serves as punishm entfor evilthoughts or deeds.Children above ten begin to view

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as an internal process inherent and universal inall form s ofl ife including theself' (Kalish, 1980,p. 35).

Whileyoung childrenmaynot understand the permanenc e of death young children doreactto loss. Changes in theemotional atmosphere of the house and the respon seof significant other may upsettheir secureworld. Duringelementary years theybegin to understand thatdeath isfinal. Around theageof ten children usually begin to reco gnizethat as universal and inevitableexperiencethat will occur tothem (Grollman, 1995).

Bowlby(1969)proposesa preventativemeasure as well asa precursor to a child' sexperience oflo ss and itssuccessful resolution. Heposits that the proximity to the attachment figure provides the child with a safe haven from threat;the

accessibilityof the attachment figure providesasecure base from which a child might more confidently confront challenge,and separation from the attachment figure triggered separation anxiety. Henc e,it can bededuc ed from thisthat while the lossof amajorattachment figure in childhood canand usuall yisdevastatingthe presence of othersubstitute attachment figures or thepresence of the securely attachm ent primary attachment figure can facilitate the bereavementprocess in children .In the event of the child losinga sibling, surv ivorguilt isalsoan issue (Bigelow, in Infeld and Penn er, 1996).If the death followed a long illnessit could possibly mean that the deceased child'ssiblings are likelyto have endured months of neglect(Grollman, 1995).

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While adults are notcomfortable dealing with children's sadness especially when theyare grievingthemselves (Grollman, ] 995),it iscomforting to know that dying childrenare able to reach a sense of completeness prior to death ,even if it is not expressed in adult terms (Bertoia, 1993).

Religion and spirituality in the grieving process

Thedeath of child ultimatelytendsto changethe religious orientationof the parents/caregivers in a positive direction (Grollman, 1995; Kavanaugh, 1974;Knapp, 1986).A belief in a higher powerappearsto providecomfort for the grieving parent (Knapp, 1986), allowing the opportunity to entertain the notion of being re-united someday with their belovedchild. Consequently, no grieving situation can be

considered without taking into account the attitude of the bereaved person towards his or her own eventual death (Kalish, 1980) as wellas their individual repertoire of coping strategies(Grollman, 1995)."The more confused or ambivalenta parent is to the meaning of death, the good nature of God and the existenceof a life after death, the greater the delay,the longer grief work is delayed the more difficult it is to do it effectively" (Kalish , 1980,p.155).

HIV/AIDSand Bereavement

The exploration of HIVIAIDS on the bereavementprocess is a fundamental aspect of this study. The diagnosis of AIDS has profound implications for the patient.

The prediction of death that most make in conjunction with diagnosis, the chilling realisationthat no cure yet existsand that friends are dying of AIDS, and the widely unsympathetic response of the public to affected homosexuals,generatesa sense of

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entrapment for most patients,especi ally in the first few month sfollowin gthe news (Miller,WeberandGreen, 1986).

Most individuals view HIV infectionas adeath sentence.According to

Bartlettand Finkbeiner (200 1) most peoplereact to learning oftheirdiagnosis of HIV infectionwithconfusion,shockand disbelief. Peoplewith HIV infectionoften have

//'_.#

profound feelin gsof grief about the lossestheyhaveexperienc ed or areanticipating.

They grieve for themselv esand thosewho muststay behind and try to cope with life without them (Van Dyk, 200 1).Theybeginto have problems with eating and

sleeping; theyblame themselves,arefrightened,depressed,sad,agitated,and anxious and becom e entirelypreoccupied with thediagnosis.Inanticipation of rejecti onfrom others,theymayisolate themselves.Theserespon sescan last from afew weeks toa few monthsbut typically lasts around six weeks(Bartlett and Finkbeiner,200 I).

In relationto children, studies showthat vertical or perinatalinfection is the major routeby which children acquire the virus and the prevalence in children reflects the rising prevalence in women (Goldman, 1994). Children with HIV infectionmay develop a wide spectrumof signsand symptoms,including opportunisticinfection s, encephalopathy,failure tothrive,recurrent bacterial infection s,malignancy,and UP.

Most infected childrenhavea numberof coexistingillnesses and maybe receiving treatment for acute infections at the same time aproph ylaxis and treatment for persistent infections (Goldman, 1994).

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HIV/AIDS presents some special issues, different from other chronic life- threatening illnesses. Some of these are becauseof its nature,that is, it isan

unpredictable illness with a wide spectrum of clinical problems,some of which are very uncommon. Differences also occur because HIV is a familydiseasewith more than one familymember affected. Goldman (1994) claims that even paediatric staff used to working with the chronically ill have rarely had to deal with the possibility of concurrent illnessand the death of the child,and his mother,father, and siblings. Not surprisingly, AIDS increases the number of widows and widowers. When

parents/caregivers die, children are often left in the care of grandparents and/or other members of the extended family or community (Weiss,Adler and Rowland-Jones, 2001).

Children may be symptom-free for an unpredictable length of time.

Developmental delayand regression can be anticipated but not predicted. The child may be dying, then improve, and go on to live for weeks, months or even years. As a result,parents/caregivers may have to go through anticipatorymourning and come to accept the loss,only to have the child recover leaving the family bewildered

(Goldman, 1994). Hence,aanticipatory grief playsa large part in the grievingprocess of HIV/AIDS sufferers (Bartlett and Finkbeiner, 2001).

HIV/AIDS also posits the possibility of manyattachments being severed at the same time because of the means by which the virus is passed on from person to person and the consequences of infection.The entire family can be infected resulting in multiple deaths within the intimate family system. The needs of affected others are

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similar to thoseexperienced by the HIV -infectedperson. Theseneeds areacceptan ce, respect, certainty, affiliation, support, love andcaring(Van Dyk, 2001). Hence,the process of bereave ment isunderstan dably similar forthosewho aredyingand those whoare forced to witness death(Van Dyk, 2001).

The situationis compounded by feelings of isolation due tothe socialstigma of beingHIVpositive and facing thefear of ones own impendingdeath .The presence of a socialsupport networkhasbeen consideredto bean importantmoderatin g variable instress -illness relationship s (Kurstak,Lipows kiand Morozov, 1987 ).In light of HIV/AIDS, according to Milleretal(1986) patientssuggest that theyhave becomea'''social leper" andwillavoid discussingtheirdiagnosis withothers for fear ofthe anticipated response occurring. Thisfear ofrejection results in feelin gs of isolation which prevent s the formation of newattachments, which isthe point,in relation totheresolut ion of grief,where one is said to have accepted thedeath and 'moved-on' withoneslife(Warden , 1982; 1991). Sucha scenarioprolongs the bereaveme nt process.Hence, few AIDS sufferers reach a state ofverbalised acceptanceof death (Miller etai, 1986). These complications contribute to a

significantincreaseon the emotional burden placed upon the individu al.

AIDS appears to increasemortalityratesinadultage groups that typically have the lowest mortality rates (Weiss,Adlerand Rowland-Jones,2001).According to Weiss,Adlerand Rowland-J ones (200 I),by 1997theproporti on with one or both parentsdead had risento 7% in many Africancountries,and rose to 11% in some.

Mother-to-child transmis sion , which isestimated to occur,in theabsence of

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interventi on s,inabout 30%of birthsto infected mothers, acco unts for increased infant andchild mortalit y (We iss,Adlerand Rowland-J ones, 200 1). These research ers claim that in South Africa the numberofperinatally infected HIV positivecases in 200 1wereapprox imately 75000peryear.

Affected others suffer in manywaysasa result ofuntimelydeaths.People who die ofAIDS are usuall yyoung (between25 and 35 years), and this leadsto the

"unnatural" situation where parents/caregiversoutlive their children. Grandparents whoare contem plating a quiet and contentedold agenow often find themsel ves forced to nurse andcare forsick and dyingchildren aswellas grandchildren(Van Dyk ,200 I).Insome instances,the communityor extended familymay care for the orphaned children(Goldman, 1994).Weiss, Adlerand Rowland-Jones (200 1) in a studyof HIV positi vechildren aged 0-12 years, conducted at King Edwa rd VIII Hospital, cite that 40%of the children studied lived with their biological parents, 50%

with extended family,5% wereadopted and 5% were in foster care. Fear ofstigma may lead parents/caregiversto lie tofamilyand friendsabout the diagnosis.This may onceagain lead to isolation , lack ofsupport and sympathy and guilt if the child dies, possibl y resulting in depression and thought s of suicide forthe grieving

parents/caregi vers (Goldman, 1994).

An interestingdevelopment in theprocessin gof the diagnosisofHIV infection is the belief in witchcraft being responsiblefor HIV infection helps make sense of thehorrors and disruptionscaused by HIV/AIDS (Van Dyk ,200 1).

According to VanDyk (2001) witchcraft is believed to be the causal agent in HIV