A Parent's Experience of the Couple Relationship After Bereavement
1 1 1\1 (C.1 MARI
A PARENT'S EXPERIENCE OF THE COUPLE RELATIONSHIP
AFTER CHILD BEREAVEMENT
JEANETTE ELIZABETH MARITZ
MINI-DISSERTATION
Submitted in partial fulfilment of the requirements for the degree
MAGISTER CURATIONIS
in
PSYCHIATRIC NURSING SCIENCE
in the
FACULTY OF EDUCATION AND NURSING
at the
RAND AFRIKAANS UNIVERSITY
Supervisor: Prof. M. Poggenpoel
Co-supervisor: Prof. C.P.H Myburgh
Co-supervisor: Dr. M. Oberholster
2003 This research is dedicated with love to the memory of our children. (The following names are printed with the permission from the parents)
Life matters, no matter how long or how short. K Katafiasz 2000
Roy Ryall Erbstoesser 18/04/1962 27/12/1989
Sean Peter Greaves 01/03/1987 01/03/1987
Robert Sean Greaves 05/05/1988 16/06/1992
Jacobus Marthinus Maritz 02/10/1985 04/10/1985
Petrus Johannes Maritz 26/03/1983 21/01/1988
Tshepo Sithole 15/07/1988 15/7/1988
Itumeleng Gregory Sithole 01/03/1990 08/08/1991
Desiree Smit 12/12/1989 13/04/2001
Zayn Clifford Chan Ton 08/11/1978 16/04/1995
Marcus Julius Van Platen 18/11/1982 25/11/1996 My daughters
Lindi and Anne - marie
A light in your own right SUMMARY
The death of a child is like none other. The impact shakes the world of parents in its entire being. This research tells the story of parents' experience of the couple relationship after child bereavement. The objectives of the research are to:
> explore and describe a parent's experience of the couple relationship after child bereavement; and
> describe guidelines for the advanced psychiatric nurse practitioner to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
The paradigmatic perspective of this study is guided by the Theory for Health Promotion in Nursing (Rand Afrikaans University, Department of Nursing Science, 2002:2-8). The focus is on the whole person.
A functional approach was followed based on Botes's model (Botes in Rand Afrikaans University: Department of Nursing, 2002:9-15) for nursing research. The researcher utilised a qualitative, descriptive, exploratory and contextual design (Mouton, 1996: 102). An authoethnographic strategy was implemented, & Bochner in Denzin & Lincoln, 2001:739, 747). In-depth, semi-structured, phenomenological interviews were held with parents meeting the sampling criteria. Consent for the research was obtained from the Rand Afrikaans University and informed consent was obtained from the parents volunteering to participate in the research.
Trustworthiness was maintained by using strategies of credibility, applicability, dependability and confirmability, as described by Lincoln and Guba (1985: 289- 331). Recorded interviews were transcribed and analysed using the descriptive analysis technique by Tesch (in Creswell, 1994:155 -156). The services of an independent coder were utilised and a consensus discussion held between the independent coder and the researcher highlighted the themes.
A literature control was undertaken to highlight similarities and differences between this research and other research.
The results were described in a narrative format that included the content as well as the processes of a parent's experience of the couple relationship after child bereavement. These included their stories of life before child bereavement, the extremity of the experience as they struggled for control, the confusion that it brought and the role conflict that ensued. Although individuals and relationships are unique, most of these parents experienced emotional responses of grief, anger, loneliness, guilt and blame. Parents attempted to alleviate their anxiety through the use of defensive coping mechanisms and responses such as repression, suppression and avoidance. Attempts were made to fill the vacuum that the loss created through substitution and replacement. The couple's communication is severely tested during the process. The permanence of the loss is acknowledged along with new meanings and values. The aftermath sees parents' relationships either strengthened, weakened or remaining in nominal relationships. No parent and relationship were untouched by the death of their child.
Conclusions were drawn and recommendations made concerning nursing practice, nursing education and nursing research. Guidelines were described for the advanced psychiatric nurse practitioner to provide support to parents who have experienced child bereavement, to assist them in mobilising their resources to facilitate the promotion of their mental health.
ii OPSOMMING
Die dood van 'n kind is soos geen ander dood nie. Die impak daarvan skud die wereld van hierdie ouers in die diepste wese daarvan. Hierdie studie vertel die verhaal van ouers se ervaring van die egpaar se verhouding na 'n kindersterfgeval. Die doelwitte van hierdie studie is om:
➢ 'n ouer se ondervinding van die egpaar se verhouding na 'n kindersterfgeval te verken en te beskryf; en
➢ riglyne te beskryf vir die gevorderde psigiatriese verpleegkundige praktisyn om ondersteuning te verskaf aan ouers wat 'n kindersterfgeval ondervind het ten einde hulle geestesgesondheid te bevorder deur die mobilisering van hulpbronne.
Die paradigmatiese perspektief van hierdie studie is gerig deur die Teorie vir Gesondheidsbevordering in Verpleegkunde (Randse Afrikaanse Universiteit, Departement van Verpleegkunde, 2002: 2-8). Die fokus is op die persoon as geheel.
'n Funksionele benadering is gevolg, gebaseer op Botes se model (Botes in Randse Afrikaanse Universiteit: Departement van Verpleegkunde, 2002: 9-15) vir verpleegkundige navorsing. Die navorser het 'n kwalitatiewe, beskrywende, verkennende en kontekstuele ontwerp gebruik (Mouton, 1996: 102). 'n Outo- etnografiese strategie is geImplementeer (Ellis & Bochner in Denzin & Lincoln, 2001: 739, 747). Indiepte, semi-gestruktureerde, fenomenologiese onderhoude is gevoer met ouers wat aan die steekproefkriteria beantwoord het. Toestemming vir die studie is van die Randse Afrikaanse Universiteit verkry en ingeligte toestemming is verkry van die ouers wat onderneem het om aan die studie deel te neem,
iii Vertrouenswaardigheid is gehandhaaf deur die strategiee van geloofwaardigheid, toepaslikheid, vertroubaarheid en bevestigbaarheid, soos beskryf deur Lincoln en Guba (1985: 289 — 331), te gebruik.
Onderhoude wat opgeneem is deur middel van Tesch in Creswell, 1994: 155 — 156) se tegniek van beskrywende analise getranskribeer en geanaliseer. Die dienste van 'n onafhanklike kodeerder is gebruik en in 'n konsensusbespreking wat tussen die onafhanklike kodeerder en die navorser plaasgevind het is die temas uitgelig.
'n Literatuurkontrole is onderneem om die ooreenkomste en verskille tussen hierdie studie en ander studies te belig.
Die resultate is in 'n verhalende formaat beskryf wat die inhoud asook die prosesse van 'n ouer se ervaring van die egpaar se verhouding na 'n kindersterfgeval ingesluit het. Dit het hulle lewensverhale voor die kindersterfgeval, die uiterste nood van die ondervinding terwyl hulle geworstel het om beheer te verkry, die verwarring wat dit meegebring het en die rollekonflik wat daaruit voortgevloei het, ingesluit. Alhoewel individue en verhoudings uniek is, ondervind die meeste van hierdie ouers emosionele reaksies van verdriet, woede, eensaamheid, skuld en blaam. Ouers poog om hulle angs te verlig deur die gebruik van verdedigende hanteringsmeganismes en reaksies soos verdringing, onderdrukking en vermyding. Daar word gepoog om die Ieemte wat die verlies gelaat het deur middel van substitusie en vervanging te vul. Die egpaar se kommunikasie tydens die proses word ernstig getoets. Die permanensie van die verlies word saam met nuwe betekenisse en waardes erken. Na so 'n ingrypende verlies word ouers se verhoudings versterk, verswak of dit bly slegs 'n verhouding in naam. Geen ouer of verhouding word onaangeraak deur die dood van hulle kind nie.
iv Daar is tot gevolgtrekkings geraak en aanbevelings gemaak in verband met die verpleegkundige praktyk, verpleegkundige opvoeding en verpleegkundige navorsing. Riglyne vir die gevorderde psigiatriese verpleegkundige navorser is daargestel om ouers wat 'n kindersterfgeval ervaar het te ondersteun, om hulle te help om hulle hulpbronne te mobiliseer ten einde die bevordering van hulle geestesgesondheid te fasiliteer.
v LIST OF CONTENTS
PAGE
CHAPTER 1
RATIONALE AND OVERVIEW OF THE STUDY
1.1 INTRODUCTION 1
1.2 RATIONALE 2
1.3 PROBLEM STATEMENT 4
1.4 OBJECTIVES OF RESEARCH 7
1.5 PARADIGMATIC PERSPECTIVE 7
1.5.1 Metatheoretical assumptions 7
1.5.2 Theoretical assumptions 8
1.5.2.1 Central Theoretical statement 10
1.5.2.2 Definitions 10
1.5.3 Methodological assumptions 11
1.6 RESEARCH DESIGN 12
1.7 RESEARCH STRATEGY 12
1.8 RESEARCH METHOD 12
1.8.1 Ethical measures 13
1.8.2 Measures to ensure trustworthiness 14
1.8.3 Data collection . 15
1.8.3.1 Population and sample 15
1.8.3.2 Data Collection 15
1.8.3.3 Data Analysis 15
vi 1.8.3.4 Literature control 16
1.9 DIVISION OF CHAPTERS 16
CHAPTER 1 Rationale and overview
CHAPTER 2 Research design and method
CHAPTER 3 Results of Phase 1
CHAPTER 4 Phase 2: Guidelines and literature control, conclusion,
limitations and recommendations
1.10 CONCLUSION 17
CHAPTER 2
RESEARCH DESIGN, STRATEGY AND METHOD
2.1 INTRODUCTION 18
2.2 OBJECTIVES OF THE RESEARCH 18
2.3 RESEARCH DESIGN, STRATEGY AND METHOD 19
2.3.1 Research design 19
2.3.1.1 Qualitative 19
2.3.1.2 Exploratory 20
2.3.1.3 Descriptive 20
2.3.1.4 Contextual 20
2.3.2 Autoethnographic strategy 21
2.3.3 Research method 21
2.3.3.1 Phase 1: Exploration and description of a parent's 21
experience of the couple relationship after
vii child bereavement
2.3.3.2 Phase 2: Description of guidelines for the advanced 30
psychiatric nurse practitioner to provide support
to parents who have experienced child
bereavement on order to promote their mental
health through the mobilisation of resources. 2.4 TRUSTWORTHINESS 30 2.5 ETHICAL CONSIDERATIONS 34
2.6 CONCLUSIONS, LIMITATIONS AND
RECOMMENDATIONS
2.7 CONCLUSION 34
CHAPTER 3
DISCUSSION OF RESULTS AND LITERATURE CONTROL
3.1 INTRODUCTION 35
3.2 DESCRIPTION OF SAMPLE 35
3.3 DESCRIPTION OF RESULTS AND LITERATURE CONTROL 37
3.4 CONCLUSION 55
CHAPTER 4
DESCRIPTION OF GUIDELINES, LITERATURE CONTROL,
LIMITATIONS, CONCLUSIONS AND RECOMMENDATIONS 4.1 INTRODUCTION 57
viii 4.2 GUIDELINES 57
4.3 CONCLUSIONS OF THE STUDY 66
4.4 LIMITATIONS 67
4.5 RECOMMENDATIONS 68
4.5.1 Nursing practice 68
4.5.2 Nursing education 68
4.5.3 Nursing research 69
4.6 CONCLUSION 69
BIBLIOGRAPHY 71
ANNEXURE A: Request for consent to conduct research 80
ANNEXURE B: Request for consent to participate in the 82
research
ANNEXURE C: Transcript of an audiotaped interview 85
ANNEXURE D: Certificate of acknowledgement of parent's 98
contribution
ANNEXURE E: Coming Home: Reflections on an 100
Autoeth nog raphic strategy
LIST OF TABLES:
Table 2.1 Strategies to ensure trustworthiness 31
LIST OF FIGURES:
Figure 3.1 A parent's experience of the couple relationship 56
after child bereavement
ix QUITE1.1 RATIONALE AND OVERVIEW
1.1 INTRODUCTION
The Order of Things
A nobleman once asked a Chinese philosopher to grant his family a blessing. The philosopher thought for a moment, then said,' Grandfather dies, father dies, son dies.' The nobleman was horrified, but the philosopher shrugged his shoulders.' What other way would you have it?'
McCracken d Semel (2001)
It is said that some write about bereavement in order to release their own grief, some see it as a valid object of scientific enquiry and for others it is a polemic (Worden, 1991:ix). After the death of two of my own children I felt compelled to know more about parents' experience of the couple relationship after child bereavement and felt a passion to support and guide parents during this process. This study therefore is not only a personal catharsis but also a scientific enquiry and a polemic for bereaved parents.
Due to changes in the disease spectrum, especially HIV/AIDS and the large number of children dying due to unnatural causes in South Africa, the number of bereaved parents are bound to increase rapidly.
Bereaved parents are faced with difficult and often-devastating physical and psychological trauma (Schultz, 1978:18,136). Sadly, however, they often face this journey alone and in isolation. This could have a significant impact on the parents and the couple relationship.
1 1.1 RATIONALE
As recently as three centuries ago families were large and the chances of a child dying due to rampant disease, was part of their everyday reality. Although tragic, it was expected, as children were vulnerable. Some reason that parents and families could therefore not allow themselves to become too attached to children whose hold on life was this delicate (Wilcox & Sutton, 1981:225; Arnold & Gemma, 1994:18).
During the twentieth century the infant and child mortality rates decreased globally as health conditions improved, immunisation and contraceptives became available and socio-economic progress was made. The rate of fertility also decreased, from 6-8 children in the pre-phase of demographic transition in the modern world, to less than two children in the post-phase of transition (Mostert, Hofmeyer, Oosthuizen & Van Zyl, 1998:14,64). South Africa's fertility rate has dropped to fewer than three births per woman (Mostert, et al. 1998:129). The loss of a child is like none other, whether born into a large or smaller family.
A child is deemed the centre of the family unit, the natural receiver of care and a significant symbol of the hopes and the dreams of those around him (Wilcox & Sutton, 1981:225). Life often does not meet our expectations. Nowhere else is it seen as strongly as in the case of the death of a child. It reverses the sequence of life events for the parents.
The death of a child has multiple effects on parents and couples. Research has shown that even after years, parents still experience significant loss and pain. Efforts are continuously made to fill the emptiness and to integrate the pain and loss into their lives (Lemming & Dickson, 1996:491).
Parents are at risk for serious physical and mental health problems. Risks include the development of complicated mourning (co-occurrence of unresolved grief and clinical complications), avoided grief, high levels of anxiety, depression, substance abuse, suicide, social, occupational and family
2 dysfunction (Davis, Wortman, Lehman & Cohen, 2000:19 & William, John, Hassan & Rene, 2001:1069).
The causes of death in children are numerous. The Human Immunodeficiency Virus (HIV)/Acquired Immune Deficiency Syndrome (AIDS) has in less than two decades become a global pandemic (Mostert, et al. 1998:97). An estimated 95 000 children are said to be infected with HIV in 1999 in South Africa (iafrica: 2001). The latest findings of the Human Science Research Council published in December 2002 found that the prevalence among children aged 2 — 14 years is unexpectedly high at 5,6% (GOVZA, 2002). As the HIV pandemic has progressed and moved into different populations, the risk of paediatric AIDS associated cancers have begun to emerge with increased frequency (Blakeslee, 2000; Biggar, Frisch & Goedert, 2000:205- 209). According to Masiphile (1997:4) the tuberculosis epidemic is also fuelled by HIV.
Children do not always die of natural causes. The incidence of violence in South Africa is extremely high. As many as 719 children under the age of 18 years were killed by guns alone in 1998 (Chetty: 2000). Almost 6 500 children from birth to age 14 die yearly due to unintentional injury (motor vehicle crashes, fires, drowning, poisoning and falls) (Kidsafe, 2003).
Parents facing child bereavement will increase as HIV/AIDS takes its toll, the disease spectrum continues to change and violence is not curbed.
Knowing the stages of grief will no longer be sufficient! "What use is theory unless related to, and is built on, the experience of mourners?" (Footman, 1998:4). Although a fairly substantial amount of literature deals with death, dying, mourning and grief, comparatively little is found on the parents' experience of the couple relationship after child bereavement.
3 1.3 PROBLEM STATEMENT
The problem statement is described in the following poem by Robert Frost (1916): He saw her from the bottom of the stairs Before she saw him. She was starting down, Looking back over her shoulder at some fear. She took a doubtful step and then undid it To raise herself and look again. He spoke Advancing toward her: 'What is it you see From up there always--for I want to know.' She turned and sank upon her skirts at that, And her face changed from terrified to dull. He said to gain time: 'What is it you see,' Mounting until she cowered under him. 'I will find out now--you must tell me, dear.' She, in her place, refused him any help With the least stiffening of her neck and silence. She let him look, sure that he wouldn't see, Blind creature; and awhile he didn't see. But at last he murmured, 'Oh,' and again, 'Oh.'
'What is it--what?' she said. 'Just that I see.'
'You don't,' she challenged. 'Tell me what it is.'
'The wonder is I didn't see at once. I never noticed it from here before. I must be wonted to it--that's the reason. The little graveyard where my people are! So small the window frames the whole of it. Not so much larger than a bedroom, is it? There are three stones of slate and one of marble, Broad-shouldered little slabs there in the sunlight On the sidehill. We haven't to mind those. But I understand: it is not the stones, But the child's mound--'
'Don't, don't, don't, don't,' she cried.
She withdrew shrinking from beneath his arm That rested on the banister, and slid downstairs; And turned on him with such a daunting look, He said twice over before he knew himself: 'Can't a man speak of his own child he's lost?'
'Not you! Oh, where's my hat? Oh, I don't need it! I must get out of here. I must get air. I don't know rightly whether any man can.'
'Amy! Don't go to someone else this time. Listen to me. I won't come down the stairs.' He sat and fixed his chin between his fists.
4 'There's something I should like to ask you, dear.'
'You don't know how to ask it.'
'Help me, then.'
Her fingers moved the latch for all reply.
'My words are nearly always an offence. I don't know how to speak of anything So as to please you. But I might be taught I should suppose. I can't say I see how. A man must partly give up being a man With women-folk. We could have some arrangement By which I'd bind myself to keep hands off Anything special you're a-mind to name. Though I don't like such things 'twixt those that love. Two that don't love can't live together without them. But two that do can't live together with them.' She moved the latch a little. 'Don't—don't go. Don't carry it to someone else this time. Tell me about it if it's something human. Let me into your grief. I'm not so much Unlike other folks as your standing there Apart would make me out. Give me my chance. I do think, though, you overdo it a little. What was it brought you up to think it the thing To take your mother—loss of a first child So inconsolably--in the face of love. You'd think his memory might be satisfied--'
'There you go sneering now!'
'I'm not, I'm not! You make me angry. I'll come down to you. God, what a woman! And it's come to this, A man can't speak of his own child that's dead.'
'You can't because you don't know how to speak. If you had any feelings, you that dug With your own hand--how could you?--his little grave; I saw you from that very window there, Making the gravel leap and leap in air, Leap up, like that, like that, and land so lightly And roll back down the mound beside the hole. I thought, Who is that man? I didn't know you. And I crept down the stairs and up the stairs To look again, and still your spade kept lifting. Then you came in. I heard your rumbling voice Out in the kitchen, and I don't know why, But I went near to see with my own eyes. You could sit there with the stains on your shoes Of the fresh earth from your own baby's grave And talk about your everyday concerns. You had stood the spade up against the wall
5 Outside there in the entry, for I saw it.'
'I shall laugh the worst laugh I ever laughed. I'm cursed. God, if I don't believe I'm cursed.'
'I can repeat the very words you were saying. 'Three foggy mornings and one rainy day Will rot the best birch fence a man can build." Think of it, talk like that at such a time! What had how long it takes a birch to rot To do with what was in the darkened parlor. You couldn't care! The nearest friends can go With anyone to death, comes so far short They might as well not try to go at all. No, from the time when one is sick to death, One is alone, and he dies more alone. Friends make pretence of following to the grave, But before one is in it, their minds are turned And making the best of their way back to life And living people, and things they understand. But the world's evil. I won't have grief so If I can change it. Oh, I won't, I won't!'
'There, you have said it all and you feel better. You won't go now. You're crying. Close the door. The heart's gone out of it: why keep it up. Amy! There's someone coming down the road!'
'You--oh, you think the talk is all. I must go-- Somewhere out of this house. How can I make you--'
'If—you--do!' She was opening the door wider. 'Where do you mean to go? First tell me that. I'll follow and bring you back by force. I will!--'
The literature indicates that a common grief is not the best possible adhesive to cement a marriage or relationship (Schiff, 1977: 58). Culture and society have conditioned us to believe that when a couple marry, two people are joined and become one. Although true in many aspects, this belief shatters with the death of a child. Instead of becoming a grieving couple, they become two bereaved parents.
The inability or even an unwillingness to communicate feelings, differences in the experience and adaptation to grief and subsequent isolation is quoted as the reason why 70 - 90% of all bereaved parents/couples are in serious marital and or relational difficulty within months after the death of a child (Walsh & McGoldrick, 1995:36; Martin & Doka, 2000:103; Lemming &
6 Dickson, 1996:80). The research questions that arise from this problem statement are:
➢ " How do parents experience the couple relationship after child bereavement" and
➢ 'What can be done to facilitate the mental health of bereaved parents?"
1.4 OBJECTIVES OF THE RESEARCH
The objectives of the study are two-fold:
➢ to explore and describe a parent's experience of the couple relationship after child bereavement; and
➢ to describe guidelines for the advanced psychiatric nurse to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
1.5 PARADIGMATIC PERSPECTIVE
The paradigmatic perspective of the Department of Nursing of the Rand Afrikaans University will be applied in this study (Rand Afrikaans University, Department of Nursing Science, 2002:4-16).
1.5.1 Meta-theoretical assumptions
In this research I accept the Theory for Health Promotion in Nursing of the Rand Afrikaans University. This theory is based on a Christian approach and aims to promote the health of the individual, family, group and community.
The bereaved parent is a whole person and functions in an integrated and interactive manner with his/her internal and external environment.
7 The bereaved parent's internal environment consists of three dimensions, namely body, mind and spirit. Body includes all physical structures and biological processes. Mind/psyche refers to all intellectual, emotional and volition processes of the bereaved parent. The intellect includes the competence and quality of psychological processes of thinking, association, analysis and understanding. The emotions of the bereaved parent are a complex state and include affection, desires and feelings. Volition refers to the process of decision-making in the carrying out of choices.
Spirit is the aspect of the bereaved parents that reflect his/her relationship with God and consists of two interrelated and integrated components namely relationships and conscience.
The external environment consists of physical, social and spiritual dimensions.
The physical environment of the bereaved parent includes physical and chemical structures. The social dimension refers to the human resources in the external environment of the bereaved parents. The spiritual dimension refers to the religious aspects of the environment. Religion is drawn into the lives of the bereaved parents through death rituals.
Bereaved parents are in constant interaction both with their internal and external environments. The different patterns of interaction between these environments determine the mental health of these parents.
1.5.2 Theoretical assumptions
The theoretical assumption of this study is firstly guided by the Theory for Health Promotion in. Nursing (Rand Afrikaans University, 2002:4).
Bereaved parents are a whole persons and function in an integrated, interactive manner with their internal and external environment.
8 The advanced psychiatric nurse is a sensitive therapeutic professional who demonstrates knowledge, skills and values to facilitate the promotion of health.
Health is an interactive dynamic process in the bereaved parent's environment. The relative status of health is reflected by the interaction in the parent's environment. This research focuses on mental health. Promotion of health implies the mobilisation of resources.
Secondly, the basic premise and practical application of Narrative Therapy (White & Denborough, 1998:1) is accepted.
Harvey in Rosenblatt, 2000:1) states that grieving involves the construction and voicing of narratives. Narratives serve as vehicles to carry intricacies and diversities of experiences, possibilities, dilemmas and choices. The more narratives we have, the richer the possibilities that could guide us (Kotze, Myburg & Roux, 2002: 20).
The word "narrative" refers to the emphasis that is placed upon the stories of people's lives and the differences that can be made through particular telling and retellings of these stories. People often offer dominant, problem-saturated stories, reflecting their sense of frustration, despair and powerlessness (White & Denborough, 1998:3).
The parents interviewed are experts on their own experiences and realities and there is value in taking what they have to say seriously.
Narrative therapy involves ways of understanding the stories of people's lives, and ways of re-authoring these stories in collaboration between the therapist and the people whose lives are being discussed.
Narrative therapy engages in externalising conversations. Externalisations are designed to help establish a context where the parents experience
9 themselves separate from the problem; it escapes blaming discourses, which tend to confuse the parent's identity with their experience and action (White, 1991:25).
1.5.2.1 Central theoretical statement
Exploring and describing a parents experience of the couples relationship after child bereavement forms the basis for describing guidelines for the advanced psychiatric nurse to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
1.5.2.2 Definitions
PARENT
"Parent" refers to a biological mother and/or father who has borne a human child (SA Concise Oxford Dictionary, 2002).
COUPLE
A "couple" is two people who are married or otherwise closely associated romantically or sexually (SA Concise Oxford Dictionary, 2002) For the purpose of this research parents can be, married, unmarried or divorced at the time of this study.
RELATIONSHIP
This refers to the connection between two or more people and their involvement with each other, especially with regard to how they behave and feel towards each other and communicate or co-operate (Encarta World English Dictionary, 1999: CD-ROM).
10 EXPERIENCE
"Experience" refers to the sum total of an individual's thoughts and feelings and the things that have happened to an individual. It includes the internal environment (body, mind and spirit) as well as the external environment (physical, social and spiritual dimensions).
CHILD
A child refers to a biological son or daughter of human parents (Encarta World English Dictionary, 1999: CD-ROM). For the purpose of this research the age of the child is of minor importance as it makes little difference with regard to the responses, emotions and grief (Schiff, 1977:4;Bowlby, 1980:122; Leick & Davidsen-Nielsen, 1991:77).
BEREAVEMENT
"Bereavement" is a constantly changing process after a beloved person has been taken away through death, the period in which mourning takes place. (Martin& Doka, 2000:14; Cochrane & Carroll, 1991:64; Fawcett, 1993:164 & Encarta World English Dictionary, 1999: CD-ROM).
1.5.3 Methodological assumptions
Botes's model (in Rand Afrikaans University: Department of Nursing, 2002: 9) for research in nursing will be utilised as methodological point of departure. The model presents the activities of nursing on three levels.
The first level is nursing practice, which includes all disciplines of nursing as well as nursing education and management. Nursing practice serves as the primary source of research themes.
The second level represents the theory of nursing and research methodology. The purpose of nursing and research can be stated as functional by nature in that knowledge, which is generated by research, is applied in nursing practice.
11 Therefore the knowledge generated by this study will be utilised in describing guidelines for the advanced psychiatric nurse in practice to provide support to bereaved parents through the mobilisation of resources in order to promote mental health.
The third level represents the paradigmatic perspective of nursing. The Department of Nursing of the Rand Afrikaans University accepts the Theory for Health Promotion in nursing as paradigmatic perspective.
1.6 RESEARCH DESIGN
A qualitative, descriptive, exploratory and contextual design will be utilized (Mouton, 1996:102). This research design will be discussed in greater depth in Chapter Two.
1.7 RESEARCH STRATEGY
An autoethnographic strategy is followed (Ellis & Bochner, in Denzin & Lincoln, 2001:739, 747). See Chapter Two for discussion.
1.8 RESEARCH METHOD
This research will be conducted in two phases. Phase 1: The exploration and description of a parent's experience of the couple relationship after child bereavement.
This phase involves the identification of bereaved parents meeting the sampling criteria and in-depth, semi-structured, phenomenological interviews, with these parents. Field notes and observations will be noted and data analysed. A literature control will be conducted in order to verify findings.
Phase 2: Description of guidelines for the advanced psychiatric nurse practitioner to provide support to parents who have experienced
12 child bereavement in order to promote their mental health through the mobilisation of resources.
Data generated in phase one will serve as the basis for describing guidelines for the advanced psychiatric nurse to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
1.8.1 Ethical measures
This research is guided by the ethical aspects according to Rand Afrikaans University Standards (2001:1-4). The following aspects will be adhered to:
The right to privacy, confidentiality and anonymity will be ensured through the following: The research will be communicated in such a way that data cannot be linked to a specific parent/s. All data and information obtained will be treated as confidential and parents will remain anonymous.
The right to equality, justice, human dignity/life and protection against harm. The research will be planned and executed in a way, which will as far as possible foster beneficience and exclude harm/exploitation of parents.
Debriefing sessions will be held after the research, during which the parents have the opportunity to work through their experience and its aftermath. It will also have the purpose of rectifying any misinterpretations, which may have arisen in the minds of the parents after the completion of the research. As this research involves a very sensitive and possibly painful experience, psychic discomfort may be created. Muller (1993:29) cautions that this could have repercussions for researchers in that they may feel morally obliged to make some form of intervention more suited to their clinical role than that of researchers. The guiding principle is the ethic of respect for personal autonomy of the individual. Should this be the case in this research, I will
13 account for the intervention in the course of data analysis. I will provide follow- up supportive referral source for each respondent who may wish to make use thereof. Termination and withdrawal will be handled with sensitivity (Strydom, 1998:34).
The right to freedom of choice, expression and access to information. Parents' involvement is voluntary; they may withdraw or terminate participation in the research at any stage without fear of prejudice. Parents will be informed of the purpose of the research, methods and procedures, recording of data, duration, nature of participation and the possible advantages and benefits.
The identity, affiliation and qualifications of the researcher will be made known. Parents will be informed of how confidentiality and privacy will be safeguarded.
The right of the community and the science community. Quality of research will be ensured through the following: adhering to the highest standards of research planning, implementation and reporting. Every effort will be made to remain neutral and unbiased through the 'bracketing' of my own views and experiences. The research will be done honestly; no evidence will be manipulated. Conclusions will be justified and findings will be reported fully. The input of parents will be acknowledged. Acceptable procedures and methods of science will be used.
1.8.2 Measures to ensure trustworthiness
Trustworthiness will be maintained by using strategies of credibility, applicability, dependability and confirmability as described by Lincoln and Guba (1985: 289-331). Strategies to ensure trustworthiness are fully discussed in Chapter Two.
14 1.8.3 Data collection
Phase 1: The exploration and description of a parent's experience of the couple relationship after child bereavement.
This phase involves the identification of bereaved parents meeting the sampling criteria and in-depth, semi-structured, phenomenological interviews, with these parents. Field notes and observations will be noted and data analysed. A literature control will be conducted in order to verify findings.
1.8.3.1 Population and sample
The target population is identified as parents who have experienced child bereavement, resident in the Greater Johannesburg Metropolitan region. Purposive sampling (Strydom & de Vos, 1998:198) will be used in order to ensure that specific elements are included in the sample. The approach employs a high degree of selectivity. Sampling criteria: These criteria will be discussed fully in Chapter Two.
1.8.3.2 Data Collection
Request for participants will be through a mediator, who is a specialist paediatric oncology nurse.
Data will be collected by means of in-depth, semi-structured, phenomenological interviews.
1.8.3.3 Data Analysis
Recorded interviews will be transcribed and analysed using the descriptive analysis technique by Tesch On Creswell, 1994:155 - 156).
15 1.&3.4 Literature control
Findings of this research will be verified through a literature control in order to highlight similarities and differences from other similar research.
Phase 2: Description of guidelines for the advanced psychiatric nurse practitioner to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
Data generated in phase one will serve as the basis for describing guidelines for the advanced psychiatric nurse to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
1.9 DIVISION OF CHAPTERS
CHAPTER I RATIONALE AND OVERVIEW OF THE STUDY
CHAPTER 2 RESEARCH DESIGN AND METHOD
CHAPTER 3 RESULTS OF INTERVIEWS AND LITERATURE CONTROL
CHAPTER 4 DESCRIPTION OF GUIDELINES, LITERATURE CONTROL, CONCLUSIONS AND RECOMMENDATIONS.
16 1.10 CONCLUSION
This chapter introduced the topic "A parent's experience of the couple relationship after child bereavement". The rationale and problem statement highlights the difficulties parents could face in the couple relationship and the difficulties to integrate their experience after child bereavement. This research aims to explore the experience of a parent of the couple relationship after child bereavement and to describe guidelines for the advanced psychiatric nurse practitioner in supporting these parents in order to facilitate their mental health. The paradigmatic perspective of the research is described as well as the research design, strategy and methods. Chapter Two will elaborate on the design, strategy and methods mentioned in Chapter One.
17 NM RESEARCH DESIGN, STATEGY AND METHOD
2.1 INTRODUCTION
This chapter presents a description of the research design and method.
This research aims to provide bereaved parents with the opportunity to voice their experience and their needs for support. This will form the basis for the description of guidelines for the advanced psychiatric nurse to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
This research will utilise a qualitative, descriptive, exploratory, contextual design and an autoethnographic strategy in order to meet the above mentioned objectives. Data will be gathered through in-depth, semi- structured and phenomenological interviews.
Data analysis and literature control will serve as the basis for describing guidelines in phase two.
2.2 OBJECTIVES OF THE RESEARCH
The objectives of the research are two-fold: > to explore and describe a parents experience of the couple relationship after child bereavement; and
> to describe guidelines for the advanced psychiatric nurse to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
18 2.3 RESEARCH DESIGN, STRATEGY AND METHOD
2.3.1 Research design
A research design is a plan for conducting research that maximises control over factors that could hinder the validity of the eventual results (Mouton, 1996:107; Burn& Grove, 1993:261). In this research a qualitative, descriptive, exploratory, contextual design will be utilized.
2.3.1.1 Qualitative
According to Creswell (1998:255) qualitative research refers to an inquiry process based on specific methods of inquiry that explores social or human problems and understanding how things occur (Creswell, 1994:162). Burns and Grove (1993:777) further elaborate that it explores life experiences and the meaning given to these experiences. It enables the researcher to build a complex and holistic picture through the analysis of words, reporting specific views of the informants and conducts the study in a natural setting, where human behaviour and events occur. Strauss and Corbin (1990:17) state that qualitative research can be used to gain fresh slants about which quite a lot is known. As mentioned in Chapter One, there is a lot known with regard to grief, bereavement and mourning.
In so far as the quantity of written material regarding "Parental grief and bereavement, a parent's experience of the couple relationship" is often only mentioned in passing, with little or no guidelines as to how to go about assisting these parents. This research aims to explore and describe a parent's experience of the couple relationship after child bereavement, which is both a social and human problem. I believe that there are multiple realities and a qualitative design attempts to understand multiple realities. A qualitative design will be best suited with its potential for revealing and understanding complexities, both in process and outcome of parents' experiences of the couple relationship after child bereavement (Creswell, 1994:162). The
19 qualitative design also allows for greater flexibility (Mouton 1996:108), which may be valuable as the actual operationalisation, although well-planned, may need to be adapted to the parent's reality and experience.
2.3.1.2 Exploratory
The aim of exploratory studies is to establish the 'facts', to gather new data, to determine whether there are new patterns in the data and to gain new insights into the phenomenon (Mouton, 1996:103 & De Vos, 1998:124). The aims of this research are exploratory in nature and attempt to describe the meaning parents ascribe to their experience.
2.3.1.3 Descriptive
Creswell (1994:145,162) states that the data that materialises from a qualitative study is descriptive in that the researcher is interested in process, meaning and understanding. "Descriptive" refers the accurate portrayal of particular individuals or real life situations (in words), for the purpose of discovering new meaning, detcribing what exists and categorising information (Burns & Grove, 1993:29).
(C-. This research attempts to describe parents' experience of the couple relationship after child bereavement, their real life situation and the way they make sense of their experience. Understanding their experiences will help in the writing of guidelines in the second stage of this study.
2.3.1.4 Contextual
The context involves situating the object of the study or phenomena of study within its immediate setting (Creswell, 199:62). It avoids the separation of components from the larger context (De Vos, 1998:281) and is uniquely descriptive in that differences and distinguishing characteristics are described, (Rand Afrikaans University, 2002:12). According to Mouton (1996:133) in a contextual strategy, a phenomenon is studied because of its intrinsic and
20 immediate contextual significance. It involves far more than the physical environment. The researcher will be required to understand interviewing data and observations obtained from parents, within the social meanings that form them. Words and behaviour cannot merely be described, but must be understood as to why they take place and under what circumstances (Morse, 1994:162).
2.3.2 Autoethnographic strategy
Ellis and Bochner (in Denzin & Lincoln 2001:739 - 748) describe autoethnography as a form of writing and research that displays multiple layers of consciousness, connecting personal with cultural. It is an attempt at practicing self-reflectivity on the part of the researcher by having a closer look at one's own longings and belongings, with the familiarity that — when viewed from a distance can change one's perspective considerably. The lens moves back and forth, a wide lens outward of a personal experience inward, thus exposing vulnerabilities, conflicts, choices and values. It shows change over time to make sense of experience. Text is used both as an agent of self- understanding and ethical discussion. Strategies include introspection, personal experience and interactive interviewing. According to these authors personal narrative is both moral work and ethical practice and ensures emotional reliability.
2.3.3 Research method
The study will be conducted in two Phases: 2.3.3.1 Phase 1: Exploration and description of a parent's experience of the couple relationship after child bereavement. This phase involves populaltion and sampling, data gathering through in- depth, semi-structured, phenomenological interviews, data analysis and literature control.
21 Population and sample
"Population" refers to all the individuals that meet sample criteria for inclusion in a study and"sample" refers to a subset of the populition thatli-ietected for a study (Burns & Grove, 1993: 776,779),_
The target population is identified as parents who have experienced child bereavement, resident in the Greater Johannesburg Metropolitan region.
Purposive sampling (De Vos, 1998: 198) will be used in order to ensure that specific elements are included in the sample.iThe approach employs a high 111, degree of selectivity. Rubin and Rubin (1995:68) state that in qualitative interviews interviewees are frequently chosen along social networks as was done in this research. It is also common to start with a personal acquaintance who has contact with the group being studied. Parents will be purposefully chosen by a mediator and the researcher for their knowledge and lived experience of the couple relationship after child bereavement.
Data will be collected until it is saturated, as evidenced by repeating themes, (Poggenpoel, in Rossouw,2000:157)._
Sampling criteria:
Sampling criteria list the characteristics essential for memberShip in the target population (Burns & Grove., 1993:236). The following characteristics are essential for inclusion in this study: The target population should involve the biological parents (mother and/ or father) of a deceased child who are/were married or otherwise closely associated romantically or sexually at the time of their child's death.
An attempt will be made to include parents representing different race and ethnic groups as found within the South African context.
22 At least one year should have passed since the death of the child. Bereavement is the period in which mourning takes place, frequently of one-year duration (Fawcett, 1993:164). The initial powerful emotions should be under some degree of control for data to be collected.
/-----)parents should have a good understanding and ability to express themselves in either English_or-Afrikaans-as-the-interviewer_and co-coder speak and understand English and Afrikaans.
c) Data Collection
Data collection is described under the following headings: i) Phenomenological interviews ii) Field notes Observational notes Theoretical notes Methodological notes Reflective notes iii) Role of the researcher.
i) Phenomenological interviews
The primary tool of data collection in a phenomenological study is the interview. Qualitative interviewing is_an_intentional way of finding out what people feel and think_about_their world-as -well-as.their experience of their
--o 1 In these interviews, specific topics are studied. During a semi- structured interview the researcher wants specific information and does not impose a set of categories. The researcher tries to understand the knowledge and insights of the interviewee's worldeubin & Rubin, 1995: 1-5).
Semi-structured interviews are well-suited for exploring phenomena and as the research topic is sensitive by nature, it provides the opportunity for probing for information and clarifying answers. It also lends itself to increasing
23 response rates by utilising both open and closed-ended questions (Parahoo, 1997:296). The phenomenological interview of this study's central question is as follows: "How was it for you, as a couple, when you lost your child?" The question is open-ended and allows the respondent the opportunity to structure an answer in any of several dimensions (Krueger, 1994:57). The word 'experience' has been replaced with 'Tell me how it was for you' as previous studies found the word 'experience' to be ambiguous (Maphorisa, Poggenpoel & Myburgh, 2002:28).
A pilot study will be undertaken with a bereaved parent who meets the sampling criteria to identify possible problems likely to occur and to plan strategies in order to avoid further problems. ii)) Field notes
Field notes are written as soon as possible after interviews and observations. Field notes are the backbone of collecting and analysing field data. They are utilised as a memory tool. Their construction is part of the investigative process. The researcher constantly and actively takes mental notes. Jotted notes are a memory cue for a mental note. Key phrases, quotes, easily forgotten details, ideas, impressions, personal feelings, emotional reactions, conclusions, reflections, analytical ideas and inferences are jotted down. These should not be censored (Bailey, 1996:80 - 85). Schatzman and Strauss's model in Schurink, 1998: 285) for note-taking consists of three elements: namely observational notes, theoretical notes and methodological notes. a) Observational notes
Observation and interviews go hand in hand (Parahoo, 1997:331) as it allows for more complete understanding of what is being studied. Multiple methods reveal different realities. Observational notes provide an account of what
24 happened. The researcher uses all his/her senses during observations. Cormier and Cormier (1991:66 — 70) note the following: physical surroundings verbal responses (including paralinguistics, for example voice level and pitch and fluency in speech) and non-verbal behaviours (these include kinetics such as eye contact, facial expression, mouth, shoulders, legs and feet and total body).
Schatzman and Strauss (1973:100) state: "The observational note is the Who, What, When, Where and How of human behaviour".
Theoretical notes
Theoretical notes are used to derive meaning from observational notes. The observer thinks about the behaviour, infers, interprets, hypothesises and relates observations to other ones. An attempt is made to identify patterns that were frequently found in the course of the study. In this study an emic approach is utilised in that the phenomenon is viewed from the parent's point of view (Schurink, 1998:286).
Methodological notes
Schatzman and Strauss (1973:101) explain that methodological notes might be considered as observational notes on researcher's themselves and upon the methodological process itself.
Reflective notes
Creswell (1994:152) describes reflective notes as an opportunity for the researcher to record personal thoughts for example suppositions, feelings, problems, ideas, intuition, impressions and biases. They provide both an opportunity for catharsis and maintaining contact with the researchers own internal environment.
25 iii) Role of the researcher
Researchers, in qualitative research, are the primary instruments for data collection (Creswell, 1994:145). In order to prepare themselves they have to prepare themselves through self-examination as well as mastering interpersonal and communication skills (Schurink, 1998:258). Phenomenological researchers try to bracket their own presuppositions about the phenomenon under study (Parahoo, 1997:152,391) in order to decrease the probability that these may influence the description and interpretation of the respondents' experiences. To this effect the researcher has done an autoethnographic interview with a supervisor.
According to Burns and Grove (1993:428) the quality of the data collected depends on the quality of the interviews and observation. Establishing rapport and trust is essential in collecting quality data. The researcher will endeavor to establish rapport with the parents through an attitude of unconditional acceptance, respect, empathy, honesty, openness and modesty (Poggenpoel, in Rossouw, 2000:154).
In order to validate the uniqueness of each parent's experience, the researcher accepts a not-knowing stance; thereby communicating a genuine curiosity, being open for and taking seriously anything the parents may say (Rober, 1999:212). Not knowing means that the researcher listens in such a way that she will be open to the full meaning of the parents' description of their experience. She acknowledges that her experiences may create a bond with the respondent but she will not and cannot assume that their grief is the same as hers.
Without communication there can be no interview. Communication skills required by the researcher include:
26 Responsive listening:
Responsive listening refers to the attending to verbal and non-verbal messages (for example eye contact, body language, gestures and posture) and the apparent and underlying thoughts and feelings of the interviewee. It implies genuine understanding (empathy), acceptance and concern (Okun, 2002: 69, 85) and is essential to establish rapport.
Okun (2002:81) elaborates on the following verbal responses:
Minimal verbal response
Minimal verbal response indicates that the researcher is listening and following what is being said. This could include head nodding or verbal cues such as "mm-mm", "yes" and "I see".
Probing
"Probing" is an open-ended attempt to obtain more information. The researcher will probe in a friendly, non-threatening and re-assuring way. No value judgments are expressed. Statements such as "tell me more" and "I'm wondering " can be used.
Reflecting
Reflecting refers to the researcher's understanding of the interviewee's concerns and perspectives. Reflecting could include feelings and non-verbal behaviour, what has been omitted and emphasised and specific content. Examples that could be used include" It sounds as if you are...", "you're feeling...because...".
27 Clarifying
"Clarifying" is an attempt to focus on or understand the basic nature of the interviewee's statement: "I'm confused about...". "Could you go over that again?"
Summarizing
By "summarizing", the researcher synthesizes what has been communicated and highlights major themes (cognitive and affective).
Silence
The researcher will use silence when applicable to give the respondents time to express emotions, to reflect on an issue or to slow down the pace of the interview (Cormier & Cormier, 1991:74). a) Data analysis
Qualitative data analysis focuses on the following: D understanding rather than the explaining of a phenomenon in a particular context or setting; D accurately keeping with the concepts the respondents use to describe and understand themselves; D constructing 'stories' and accounts that retain internal meaning and coherence of the phenomenon rather than breaking it into components; and D conceptualising valid accounts of social life and phenomena rather than generalising explanations (Mouton, 1996: 168).
Recorded interviews will be transcribed and analysed using the descriptive analysis technique by Tesch (in Poggenpoel, 1998:343). Tesch's approach proposes eight steps to engage a researcher in a systematic process of analysing textual data:
28 The researcher obtains a sense of the whole by reading through the transcriptions carefully. Ideas that come to mind may be jotted down. The researcher selects one interview, for example the shortest, top of the pile or most interesting and goes through it asking: 'What is this about?" thinking about the underlying meaning in the information. Again any thoughts coming to mind can be jotted down in the margin. When the researcher has completed this task for several respondents, a list is made of all the topics. Similar topics are clustered together and formed into columns that might be arranged into major topics, unique topics and leftovers. The researcher now takes the list and returns to the data. The topics are abbreviated as codes and the codes written next to the appropriate segments of the text. The researcher tries out this preliminary organising scheme to see whether new categories and codes emerge. The researcher finds the most descriptive wording for the topics and turns them into categories. The researcher endeavours to reduce the total list of categories by grouping together topics that related to each other. Lines are drawn between categories to show interrelationships. The researcher makes a final decision on the abbreviations for each category and alphabetises the codes. The data belonging to each category is assembled in one place and a preliminary analysis performed. If necessary, existing data is recoded by the researcher. A set of clean data is provided to an independent coder who has experience in qualitative data analysis. After the independent coder and the researcher have completed the data analysis they will meet for a consensus discussion. f) Literature control
The literature control will provide a framework as well as a benchmark for comparing and contrasting the results (or themes or categories) of this research with other findings (Creswell, 1994:23).
29 2.3.2.2 Phase 2: To describe guidelines for the advanced psychiatric nurse practitioner to provide support to parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
Data generated in phase one will serve as the basis for describing guidelines in phase two.
2.4 TRUSTWORTHINESS
In qualitative designs, validity and reliability are described through strategies for trustworthiness. This research operationalises the strategies of credibility, applicability, dependability and confirmability as described by Lincoln and Guba (1985: 289-331). These strategies are explained as follows:
2.4.1 Credibility
Credibility is about truth value and truth in reality (Miles & Huberman, 1994:278; Morse, 1994:105). According to Lincoln and Guba (1985:296) credibility refers to a two-fold task, namely to carry out the research in such a manner that the likelihood of the findings will be found to be credible is improved and secondly having the findings approved by the constructors of the multiple realities studied. Strategies for credibility for this research are described in Table 2.1.
2.4.2 Applicability
Applicability refers to the extent in which findings can be applied to other contexts and settings (Poggenpoel, 1998: 349). The ability to generalise is not relevant to qualitative research but rather describing the uniqueness of each situation, context or experience. Lincoln and Guba (1985:297) refer to fittingness or transferability, as the standard against which applicability of qualitative data is assessed. The research meets this standard when the
30 findings fit into contexts outside the research situation that are determined by the extent of goodness of fit between the two contexts (De Vos, 1998:349). Lincoln and Guba (1985:298) note that the responsibility of the original investigator ends in providing sufficient descriptive data to make comparisons; should this be the case, she has addressed the problem of applicability. Strategies for applicability for this research are described in Table 2.1.
2.4.3 Dependability
In addressing dependability the researcher attempts to account for changing conditions to the phenomenon and changes in design created by the increasingly refined understanding of the setting (Lincoln & Guba, 1985:299). Strategies for dependability for this research are described in Table 2.1.
2.4.4 Confirmability
Confirmability refers to the evaluation of the characteristics of the data and not the researcher. It focuses on whether the results of the research could be confirmed by another (Lincoln and Guba, 1985:300) and /or obtaining direct and repeated affirmations of what the researcher has heard, seen or experienced with respect to the phenomena (Morse, 1994:105). Strategies for confirmability for this research are described in Table 2.1.
Table 2.1 STRATEGIES FOR TRUSTWORTHINESS STRATEGY CRITERIA APPLICABILITY Credibility Prolonged engagement Building trust through honouring anonymity, honesty and openness. Establish rapport through spending time with respondents before the interview.
31 • Saturation of data.
Triangulation • Parents represent different race and ethnic groups. • Multiple methods of data collection are used: interviews, field notes and observation. • Multiple investigators include three supervisors and an independent external co-coder.
Peer debriefing • The services of a colleague who has 20 years experience in the field of pediatric oncology will be acquired to examine findings.
Member checking • Informal member checking is done with the respondents through clarifying and summarising during the interview. • Discussions with respondents will provide them with opportunities to add material, make changes and offer interpretations. • Literature control by using findings of similar studies
32 done on parental bereavement. Discussions with colleagues will take place as a form of member checking.
Reflectivity The researcher will make use of a reflective journal and field notes. Authority of the As the researcher, I have researcher completed a Masters degree course in Research Methodology. There are three supervisors of this study. Two have doctorates in psychiatric nursing. Transferability Dense description Purposeful sampling is used. The demographics of the respondents are described. The results are described in depth with direct quotations from the interviews. The results are recontextualised in the literature.
Dependability . Code-recoding All aspects of the research procedure are described fully. This includes the methodology, characteristics of the
33 sample and process and data analysis. Data quality checks. Peer reviews. Confirmability Triangulation As described
2.5 ETHICAL CONSIDERATIONS
This research is guided by the Ethical aspects according to the Rand Afrikaans University Standards (2001: 1-4). > Parents' right to privacy, confidentiality and anonymity will be ensured. Parents' right to equality, justice, human dignity and protection against harm will be ensured. Parents have the right to freedom of choice, expression and access to information. The right of the community and science community to quality research will be adhered to. For a full description refer to Chapter One.
2.6 CONCLUSIONS, LIMITATIONS AND RECOMMENDATIONS
Conclusions will be made at the end of the research as well as recommendations for nursing practice, education and further research. Limitations of the research will be identified and measures to overcome limitations will be discussed.
2.7 CONCLUSION
In Chapter Two a description of the research design, strategy and method was given. Measures to ensure trustworthiness and ethical aspects were addressed. In Chapter Three, the results of the phenomenological interviews and literature control will be described.
34 DISCUSSION OF RESULTS AND LITERATURE CONTROL
measure every grief! meet
With analytic eyes:
wonder i I it weighs like mine
Or has an easier size.
wonder if it hurts to live,
Or if they have to try,
And whether, could they choose between,
They would not rather die.
-Emily Dickinson(i996)
3.1 INTRODUCTION
Chapter Two gave a description of the research design, strategy and method. Chapter Three will present a narrative account and discussion of the results of the in-depth, semi-structured phenomenological interviews with parents of their experience of couple's relationship after child bereavement. The data of the interviews guide the literature control. It includes relevant information that will justify the results of the interview or emphasize its uniqueness (Poggenpoel, 2000:158).
3.2 DESCRIPTION OF SAMPLE
The sample of this study consisted of nine parents (one of whom was involved in the pilot study), two fathers and seven mothers. Data were found to be saturated through recurring themes in the in-depth, semi-structured phenomenological interviews with parents regarding their experience of the couple relationship after child bereavement.
35 Although I initially planned to interview both parents, the realities of the operationalisation proved to be problematic. Fathers were reluctant to be interviewed and the focus of the study moved to "A parent's experience of the couple relationship after child bereavement" rather than "Parents' experience as a couple of child bereavement".
Characteristics: Special note: although only two fathers of the nine parents agreed to the interview, this figure corresponds to Bernstein's study (1998: xix) in which forty-eight mothers participated and twelve fathers giving an average of twenty-two to twenty-eight percent of fathers participating. The 'children' who died ranged in age from a few hours to twenty-seven years with an average age of ten years. Nine children were male and one female. The interviews were an average of ten years after the death, with a range from two years to eighteen years. Three of the parents lost two children each. The parents' age at the time of their child/children's death ranged from twenty-two to fifty-two years. Eight parents/couples were married at the time of the interview; one parent was separated. The duration of the marriage at the time of the child/children's death ranged from two to thirty-one years. The causes of death were: Sudden — two: One automobile accident and one choking. Anticipated — six: Two congenital muscular myopathy. Four cancers Other — two. All the parents had surviving children, with an average of two siblings. Three of the interviews were conducted in Afrikaans and the remaining six in English. ➢ Seven of the parents were white, one Asian and one black.
36 As autoethnography connects the personal with the culture, both my own interview and that of my husband is included.
One parent was referred for professional support and as a trust relationship was established between the parent and myself, we still have contact.
3.3 DESCRIPTION OF RESULTS AND LITERATURE CONTROL
The description of the results and literature will be described in a narrative form. Grief does not lend itself to neatly numbered paragraphs and tables. Bernstein (1998:5) describes it as a time of craziness, when all rules that govern life are suspended. The results follow the parent's experience of the couple relationship after child bereavement. Themes are printed in bold.
Bereavement is a constantly changing process! Process is about how things happen. What happens before and after? What happens under stress? What are the interaction norms? (Peltier, 2001: 103). No parent reported being unmoved or unchanged personally or in a couple relationship by the experience of child bereavement. Herewith their experiences.
"And they lived happily ever after." So ends many a fairy tale or fiction. As with most couples, these parents enter the couple relationship with hopes and dreams of "living happily ever after". They talk of their life `before'....
" We married as fun, carefree people, you were open and honest about everything."
"our bond was very strong."
For other parents the beginning of their relationship was different.
"In die begin het ons nie eintlik 'n bale stewige huwelik gehad nie. Ons het bale probleme gehad."
37 (In the beginning we did not really have a strong marriage. We had many problems.)
Not only do the parents talk of the time "before" but also of their hopes and dreams from conception, for their child. The child holds multiple meanings for a parent, as an extension of the parent's hopes, dreams, needs and wishes.
"I mean you have, I've always said the minute you even conceive, you have planned 20 years down the line."
This sense of calm, though not always blissful, shatters when a child dies! The extremity of this traumatic and shocking event hits like a tornado. The tempest brings a path no one volunteers for. It is moves the boundaries of pain and agony as desperate attempts are made to gain control.
"Thinking about what it was like...it was very tough, I mean...I think one of the worst things you ever experienced, uhm...I think its, I think, I think the hardest thing is to feel so out of control. Uhm... And feel such pain, as you never felt before, uhm it's very difficult as a couple. It's such a uhm terrible stage of your life and you have no idea how to cope. Uhm...and feel such pain."
"No other words I can think of.. just a very agonizing, painful time."
"Dit is seker die 'ultimate' nagmerrie in enige ouer se lewe." "dis erge trauma... ." (It is surely the ultimate nightmare in any parent's life) (severe trauma...)
Wheeler (2001:2), Lemming and Dickson (1996:78) and Grout and Romanoff (2000:1) affirm the death of a child as a devastating, difficult and traumatic event. Wheeler (2001:54) in a study on parental bereavement found similar
38 emotional responses often described in extreme terms "Although sadness and sorrow were mentioned, they were not the prevailing initial response. The emotional responses were often described in extreme terms."
Even if death was expected it was a shock.
"it was a shock and I think it a bit uhm difficult as well cause you know we had, he's been, I've been living with it for ten years as he was ill...so we always, as parents you know, we always hoped that he would grow up, you know, be fine, etcetera, and it just took us by surprise. I guess and I suppose, it wasn't easy. "
According to Fawcett (1993:142) these feelings of being shocked and being stunned predominate during the first few weeks after the loss. During the interviews I observed that the parents' loss of, or attempt to control their internal as well as external environments, is a continuous process and not limited only to the initial time of the loss. It surfaced when painful feelings occurred and reoccurred and in supportive situations.
"...it's such a terrible stage of your life and you have no idea how to cope with it."
".you can't care for your child because it's taken out of your hands."
"...It's something that changes your relationship forever as a married couple."
" You appreciate all the help you get but uhm, ...it's like you're not even in control of yourself."
The immense pain and loss of control lead to confusion.
39 "It's a very complex situation and sometimes you find it hard to understand yourself. You can't even turn around and say to somebody what you need.. you're so confused by it all."
Confusion impacts on the role expectations of the parent and results in role conflict
" I think for the man it's very hard because he's the protector and he feels very... unworthy or...that he hasn't actually fulfilled his role and as the mother as well you're the caregiver, you can't care for your child because it's taken out of your hands ...and you have to trust the doctor' and nurses to do that for you, uhm... it's a very painful experience, it's...no other words 1 can think of...just a very agonizing, painful time ... uhm...1 think as a couple it impacts on you because...you are so thrown by what has happened, that you actually seem to lose perspective on uhm... what your role is again uhm...I think it just throws you so badly that you loose all sight of what you're actually doing... quite a heavy burden to carry...but I feel sure he's doing the same for me to uhm, but it, its...is suppose in a way it's tiring, it's emotionally tiring to carry it...."
Another parent also comments on the role conflicts and it resulting in emotional draining:
"It impacted on my relationship with my husband because 1 felt when they died that 1 needed to be there for him and 1 couldn't help him and feeling guilty because I couldn't. Marriage takes a lot of work — when 1 as a mother spent hours, days and months looking after a sick child and then after a sick child and other children or grieving the loss of my second child, there simply wasn't energy left to invest in a relationship."
40 Rosenblatt (2000:145) found similar couple narratives that dealt with the different perspectives of woman and man on "being there" for each other. It is Fawcett's (1993:324) view that there appears to be a movement to a set of stereotyped role behaviours for male and females. Because of the traditional cultural role men have as the provider and protector, they are often taught from an early age that 'boys don't cry'. Many men choose to show a stiff upper lip, or feel forced into this role by society (Warden, 1991:111). A woman is expected to provide emotional support and comfort through her so-called female traits (Peppers & Knapp, 1980:65). Assuming stereotyped or another's role can be burdensome and create anger, resentment and hostility:
"... voor horn het ek horn probeer troos weet jy, agter as by nie daar was nie was ek kwaad vir horn gewees." (In front of him I tried to console him, you know. When he wasn't there, I was angry with him).
Rosenblatt (2000:77,93) explains that this "draining" in turn saps the couple relationship and makes life less interesting and rewarding. Parents were limited in what they could do because they are drained and this in turn creates emotional unavailability.
Parents at times "took over" the responsibilities of their partner. This was usually done with little verbal disclosure or acknowledgement but with a great deal of surreptitious communication. In this time of grief and severe distress this tension and anxiety may serve as a basis for increasing conflict.
No one has a script; grief is highly individualised, as each parent is unique. Each couple is made up of a male and a female and two different personalities. This dual difference accounts for endless combinations of a parent's experience of the couple relationship after child bereavement:
"I think we grieve differently. I'm very spiritual, so I always turn back to my prayers or you know, I, I love being alone. Put it this way, if I'm in that mood I just go away to the room. I'll just do my own thing
41 and I leave him to do his thing as well, whatever he...cause he likes to do things, I suppose if he...when he grieves he likes to you know get out of the house, into the garage and do his thing."
Deranieri, Clements and Henry (2002:35) attest to this as they write: " It is important to understand the typical responses to grief. However, this is no simple task because grief is a unique and individual experience."
For some the realisation of these differences came years after the child/children's death:
"...hoe verder 'n ou van dit of weggaan, besef jy later, jy is werklik twee verskillende mense en elke ou pyn verskillend." (The further you move away, you realize later, you are really two different people and each one experiences the pain differently.)
Martin and Doka (2000:112) found that gender influences patterns of grief; but gender does not determine patterns of grief.
Parents' response to grief, distress, loss and anxiety are multiple. They responded emotionally, in defensive coping mechanisms and in processes of replacement. Emotional responses included grief, loneliness, anger, guilt and blame. Defensive coping mechanisms were mainly to repress, suppress and avoid these feelings, memories and events and thirdly attempting to fill the emptiness by replacement or substitution.
Grief is an intense emotional response that floods life when a person's inner security system is shattered by such a traumatic event. " Grief can only be described as a time of craziness, when all the rules that govern life are suspended, when coping mechanisms that used to work, no longer do" (Bernstein,1998:5).
Rosenblatt (2000:88) states that grief is a measure of how terrible a child's death was, how strong parent's feelings are and about how much was lost.
42 "I think when you lose a child you are actually robbed of that future you foresee... you lose that actual vision as where you were going to as a couple, that's taken from you and I think that impacts on a couple."
" You are not the same people you were when you got married, you've been robbed of that. You've lost that life that you had, you've lost a lot more than just a child."
Soricelli and Utech (1985:430) similarly found that multiple losses exist for the couple and the family.
Parents experience grief as a lonely process. Each individual feels isolated in his/her shroud of pain.
"It is very lonely. Sometimes the only support I have is my two daughters." And "All I know was that it was very lonely for me. I didn't think that I could handle it on my own and I didn't experience anyone that I thought could carry it with me... "
A father states his experience as:
"I'm right in the middle of nowhere, stok siel alleen." (I'm right in the middle of nowhere, quite alone.")
It is unfortunate that society often denies parents the right to express their pain (Peppers & Knapp, 1980:74); more so the fathers, with expressions such as "Cowboys don't cry". This leads to further isolation and loneliness. A wife expresses her concern for her husband:
43 "Hy het bale swaar gekry, by het uhm, ...omdat ons ons seuns en mans grootmaak met die gedagte 'cowboy's don't cry' was dit vir horn bale, bale moeilik gewees." (He had a hard time, he uhm... because we raise our sons and men with the idea that cowboys don't cry; it was very, very difficult for him.)
She tells about the support she found in clergy and a bereavement counselor at the hospital however her husband did not find this support:
"...maar daar was eintlik vir horn nie veel nie. Daar's nie 'n groot `support system' nie en uhm of ondersteuningsgroepe nie." (...but for him there was not much. There is not a large support system or ...uhm support groups)
Peppers and Knapp (1980:68) acknowledge this: "When the father does acknowledge his feelings of loss, he finds few outlets for expression and little social support."
Feelings of anger were often directed towards the self, the partner, and God as the parents felt powerless:
"Anger in the sense uhm I had no power, I was powerless, uhm that I didn't have a voice to say 'look at me', what I want, what I need, a lot of anger...that they took him away after he was born, I never got to hold him."
"The only thing I now have for him (husband), I don't know whether it is anger, hatred, but I have anger. With me I feel the relationship is dead, there's nothing. It tells me the same because really he doesn't love me. That spark has gone. I cannot, I use to pretend, but I don't pretend anymore because if I see him, instead I become angry... ."
44 "Where I was just bloody angry ...very cross. I felt I was been let down by the Maker and everything you know."
One mother however stated that:
" I never felt anger, never, ..." Many variables are present in order to fully understand loss (Fawcett, 1993:141). These could include individual coping styles, personality types, the type of death, religious and spiritual beliefs and the meaning the loss holds for each individual.
Bernstein (1998:12) agrees that anger in the bereaved is many-faceted and is often displaced. The need to explain the inexplicable sometimes leads to blaming oneself or others. This in turn leads parents to experience guilt. Conflict may be experienced as parents' experiences both grief and anger.
Parents spoke of feelings of guilt and blame as measures of loss and grief. The following quotes give a sense of their feelings:
"I would say maybe if I didn't have this child, life would be better, maybe if I was more careful and the child could still be alive it would be better but...."
" I would catch it that he was blaming me, to say that I was careless... "
"En ek voel my man moes daar gewees het om dit te doen...hy uhm het my in die steek gelaat." (I feel my husband should have been there to do it... he deserted me)."
"... my man het my verkwalik daarvoor want by het gedink ek glo nie dat M genees kan word nie, maar ek, dis nie wat dit is nie. Ek het te doene gehad met die feite, ek het te doene gehad
45 met die kind. Elke dag wat sy liggaam besig is om afgetakel to word — elke dag, meer en meer skade, en dit was nie ongeloof nie, dit was maar net 'n feit. Dit dink ek het ons nogal skade aangedoen, daai ding."
(...my husband blamed me for not believing that M could be healed, but me, that's not what it was. I was dealing with facts; I was dealing with the child. Every day that his body was destroyed, everyday more harm and that wasn't disbelief, it was just a fact. That, I think caused us harm, that thing")
Blaming someone else can be an antidote for guilt. Guilt often comes from swallowing hurt and anger (Viscott, 1992:231). It invariably hurts relationships and erodes loyalty and trust as it divides the couple during crises. In moderate measure however, self-blame, guilt, blame of others and anger are part and parcel of mourning (Bernstein, 1998: 39, 124,125).
Parents call upon a variety of defensive coping styles and mechanisms in order to feel more in control of feelings, experience and reality.
Repression, according to Hook, Watts and Cockroft (2002:66), is the cornerstone of defenses, with all other defenses arising out of its workings. It is the selective exclusion of painful experiences of the past from conscious awareness; a form of censorship used to block traumatic episodes. As this is an unconscious process, I found verification of this in the "what was not said'. One mother lost two sons, a son at birth and the other son at the age of four. The surviving sibling is a girl. She subsequently had another son, who at the time of the interview was four years old. She mentions her daughter on several occasions during the interview but never mentions her four-year-old son and only once her stillborn son. She also does not mention any emotions related to her surviving children.
My attention was drawn to how often parents used of the term "I think" to describe their experience. Rene Descartes, a French philosopher, stated as
46 early as 1637 "I think, therefore I am". Freud, in the 1920's, described the ego as the "I". This being the region of the mind that is in contact with reality, it is the source of communication with the external world, being partly conscious, preconscious and unconscious. The ego defends itself against anxiety through the use of repression and other defense mechanisms (Feist & Feist, 1998:25). Margot Waddell, a psychoanalyst, claims that man is a developing individual with a mind that grows through interjecting experiences (Waddell, 2002:198.) This impels a person to think in order to retain internally, relationships with needed and valued objects in their absence. To think about an experience, however catastrophic, is to potentially learn from it.
At times the thinking and experience create too great an anxiety and fear which leads to: "/ didn't want to think about it." Thus leading to suppressing.
Suppression refers to the voluntary, intentional putting of unacceptable feelings into the preconscious (Hook, et al. 2002:81).
Suppression took many forms. It included keeping the pain to themselves, trying not to hurt their partners, selective memory and in external sources such as watching television. In order to avoid these painful feelings and memories mothers often turned to physical activities such as housekeeping, minding other children and religion. For fathers work and hobbies were places that held their unexpressed or accepted. feelings. There appeared to be a constant oscillation between suppression and avoidance:
" ...you don't want to hurt each other, you keep the pain to yourself, it is actually just better to keep it somewhere, deep down inside, than confront it, ...remember it, in a way."
"I think it's a coping mechanism. I think it is... I call it selective memory. You, you uhm... it's your way of coping. I think you'd go crazy if you had to dwell on it all the time. You do, you just
47 cope by locking it away... Try not to dwell on it and uhm trying to just carry on living as normal a live as you can."
One father related his response:
"...clan het 'n ou maar weggeraak, 'n 'trailer 'begin bou, harder begin werk en meer...skool meer...uhm, ek weet nie.. ek dink ek het gaan wegkruip in die werk en die garage en gaan wegkruip in vliegtuie." (...Then I got lost in building a trailer, working harder and more... school, more... uhm, I don't know, I think I was hiding in work, the garage and airplanes.)
Fawcett (1993:143) explains that parents experiencing the loss of a child may suppress their feelings because it seems on the surface, to be more socially acceptable.
In my own experience of both the data collection and analysis I experienced a similar response. I would be able to engage with the parents and the presenting data for a period of time, and then needed to distance myself, to engage again later.
It was interesting to note how often the powerful emotions of anger, hate and bitterness were only mentioned much later in the interviews or just briefly, changing to another topic as soon as the emotion was expressed. The tone of voice when mentioning these emotions was raised.
The avoiding of a specific situation may alleviate emotional stress, (Znoj & Keller, 2002:547). Defenses typically act as a compromise between wish and reality (Hook, et.al. 2002:66).. For these parents their wish and reality is obvious. An internal defensive style may have the parent feeling more in control but also a sense of emptiness and having a vacuum to fill.
48 As stated in the description of the sample, all parents interviewed had other children/grandchildren following the death of their child. In the previous quotes of the parents' experiences, a sense is gained of not only the loss of the child but also other losses. Parents do attempt to deal with the intensity of the loss and the vacuum that it left. Bernstein (1998:157) warns: " A child born subsequent to the loss of an older child can either be an attempt to move forward or backward. Having subsequent children can be a restoring event. Having a replacement child is an avoidance...."
Most parents mention other siblings or subsequent children and mention is made of the role they played. All but one home I entered for the interviews had pictures of the child that died, prominently displayed; and in many instances along with those of the siblings.
"...we were also very fortunate that we had another child that we cared for as well and we didn't want to ruin her life."
" Ek het half-en half begin meer met L (dogter) gesels en hoe ek voel ehm... haar geliefie, as ek TLC (Tender Loving Care) gesoek het, het ek vir haar drukkies gegee. My vrou, het redelik...she pulled away, stay away...." (I started talking to L (daughter) more, how I feel, uhm, cuddled her when I was looking for TLC, I hugged her. My wife, fairly...she pulled away, stay away.)
An interesting observation of the sample was that of the seven parents who had dogs as pets, six had the same breed, namely Staffordshire Bull Terriers. Except for one parent these pets were obtained after their child's death. According to the International Stafford Magazine (2000:2) this breed is known to be family companions par excellence, content with living closely with their human families. They form close, lifelong emotional bonds with their owners and are extremely affectionate and loving.
49 As a result of the above-motioned experiences and responses, it is not surprising to find that they had an effect on couple communication. Mention is made of a loss of honesty and openness and also an attempt to protect the other parent from pain.
"I think, it's, as a couple, there's that underlying... thing that each of you carry and you're never quite, maybe honest. You don't ever go there with each other because it's to painful and uhm... ja, I think it... maybe it takes away the honesty you have with each other... uhm you're ...not quite as open about everything. If you're feeling, if you're feeling...down or if you're feeling sad for any reason and you see your partner's fine, there's no ways you're going to burden them, you're not going to want to bring them down as well , because they have their days when their feeling ...so you learn to be very respectful of each other, consider each other, but I think before you experience loss like that you were just so open and honest about everything."
Mention is made of the present communication patterns as opposed to the time of the child's death.
"I suppose we communicate more these days. Those days we tried but maybe I wasn't hearing him, he wasn't hearing me, you know those things, maybe also grown older, get mellow."
" ...as 'n ou oor P (seun) wil praat...ek weet reg in die begin...wou my vrou nie eintlik praat nie later het sy so begin...." (...when I wanted to talk about P (son)...I know in the beginning...my wife didn't really want to talk, Later she began....)
"We did find in the beginning, a little bit...it was hard to talk."
50 A mother states:
"hy praat ook nou vir die eerste keer in al die jare." (he now talks for the first time in all these years.)
During the interviews I found that even now, years later, there are certain aspects that are not spoken about. One parent comments the following during the interview:
" Daar's dinge waarvoor 'n mens net nie lus voel om oor to praat nie". Hy gaan nie weet wat ek virjou vertel nie ne?" (There are things that a person doesn't feel like talking about. He's not going to know what I told you?)
A father relates how it came about that they started talking about their son and the impact it had on their healing:
"You know, so we didn't say anything and then L, my daughter, actually said: 'You know, what the hell. R (son) was a fun loving guy; we mustn't be shy. Let's talk about R.' So we did. From then on that really accelerated the healing process. To talk about the person, I think that's a very significant thing...but that actually started the ball rolling, of the closure and the healing and all that. So I recommend it to anybody, to start as soon as they can. Obviously there's a time that you don't want to. You don't want to hurt the other person, but that, ja, that's actually come out now, that's very valid."
According to Parkes (1996:175) a personal and collective adjustment after loss in the family is dependent upon clear and appropriate communications amongst its members. When communication channels close between partners, other problems are perpetuated (Peppers & Knapp, 1980:68). Good communication can aid the bereavement process, whereas poor communication can result in maladaptive symptoms in the long-term.
51 These processes regarding the experiences, the uniqueness of the individual and couple, role conflict, responses and communication are dynamic and reactions and feelings are ever changing. This was evident not only in the narrative of the parents' experiences but also during the interview process. Movement was made in realising the permanence of the loss, values and perceptions were revisited and the need for support was realised. Often, however, this drew the parents back into a process of confusion, avoidance and suppression.
"...it is not something you ever put down or walk away from...it's something you carry with you permanently, ...and it's difficult. "
A few minutes later in the interview this mother tearfully expresses the following:
"I think you become better people for it. I think... you are...the good that comes out of it is that you are so aware of this, the trivial stuff in life doesn't matter... You are very respectful of life, the gift that you have of life and so you don't trouble yourself with little things. You are concerned about the welfare of others lives...and so I think it matures you. Basically you see life for what it is."
Rosenblatt (2000:17) says that because of the death, the parents/couple is no longer able to rely on major assumptions they made about themselves, relationships and the world. Wheeler (2001:56) found similar responses in the revisiting of values and the making of new meanings.
And so the aftermath...
Bereaved parents have crossed a threshold across which they can never return. "You suddenly have to grow up and change and face reality."
52 Fawcett (1993:149) asserts that after the death of a significant person, the mourner is a different person. Therefore in the relationship, the partners are not the same people they were.
For some it created greater distance between the couple, others remained nominally married, and for some couples, it brought them closer. Couples also drew comparisons with other bereaved couple's as a basis for their own experience.
In order to explain the distance felt in the relationship, a parent uses the metaphor of a "chasm."
"The problems we had before...the chasm just became bigger. I became more withdrawn; he came home less. The circle went on and on. Sometimes we would reach out to the other but it took to much energy to keep it up for any length of time. So the years passed and we stayed together, but the chasm was always there. Sometimes wider than other times. Just never really connecting again. "
Lack of energy is mentioned by another parent, which lead to the couple remaining together in a nominal relationship.
"...en ek dink wat ons bymekaar gehou het is die 25 jaar, en ag ek het nie , het nie die energie gehad om iets daaromtrent te doen nie, dit was makliker om net aan te ploeter, niks daaromtrent te doen nie...." (...I think what kept us together was the 25 years, oh I did not have the energy to do something about it, it was easier just to plod on, to do nothing about it.)
One couple found that they dealt with the experience quite well and their bond was closer than before as a result of a sound relationship prior to the loss of
53 their child. There was however a difference in intensity of the experience between them as individuals.
"I, we've got a hell of a strong bond, so it actually, from what I've experienced from other couples, we didn't have much hassle from it at all, you know, uhm... ah I think, I think It hit my wife much more than it hit me...I don't know why, but it did. The birth, my wife carried the baby and I mean it's a whole different ball game, not to say I loved him any less than my wife, uhm but uhm as a couple, we weathered it actually surprisingly well. Actually if anything it drew us together. We supported each other uhm... it made our, it proved our bond was very strong anyway...."
"you know of other people who have lost a child and I feel sorry for them when they never come right."
Peppers and Knapp (1980:66) similarly found that many couples do not experience discord but in fact find their relationship strengthened by this unfortunate event.
For another couple, who did not have a smooth relationship prior to their child's death, the experience brought them closer.
"..sal ek se het dit ons nader aan mekaar gebring. Bale mense het al vir ons gevra jy weet, uhm het dit ons nie uitmekaar gedryf nie. Hulle het dit al gesien met ander mense gebeur, maar uhm, in teendeel, dit het ons beter, nader aan mekaar gebring. Ons het regtig 'n moeilike huwelik gehad en ...Maar ons het net, ek weet nie, alles het net beter geword." (I would say that it brought us closer. Many people asked us if we didn't drift apart. They saw it happening to other people, but to the contrary, it brought us closer together. We really had a difficult marriage, but we, I don't know, everything got better.)
54 Laakso and Paunonen-Ilmonen (2001:73) support these finding by stating that the child's serious illness and death changed the partner relationship. The shared experience made the partner relationship closer permanently or at least temporality, but could also cause a couple to drift apart and separate. Bernstein (1998: xv) states that no one (couple) goes from any major event in their lives without having that event change them... in some way.
Rosenblatt (2000:139) states it as a "fact" that a couple's relationships are difficult following a child's death. According to Bernstein (1998:47) it takes mature partners with a strong measure of self-confidence to be able to accept and allow for these differences under the extreme pressure following the loss of a child.
3.4 CONCLUSION
A discussion of the result of the in-depth, semi-structured phenomenological interviews with parents and a literature control of the results were presented in this chapter.
At this point I believe it is important to mention that in the literature control no concluding evidence could be found that couples who experienced child bereavement had a higher than average divorce or separation rate. Reference is made to what authors, directors of university departments and coaches assert, without referring to research cited in publication. There are no statistics available within the South African context. At the time of data collection, one parent was separated (this was a traditional marriage). My own marriage of 22 years has subsequently ended in a divorce but the death of my children was not the cause. Bernstein (1998:102) also found a low level of divorce or separation amongst the parents she interviewed and states that "... the myth may be a particular compelling fiction." In the following figure a parent's experience of the couple relationship after child bereavement is illustrated.
55 A parent's experience of the couple relationship after child bereavement
( BEFORE AFTER
Nominal elationship
No/some difficulty V0 EXTREME EXPERIENCE 0
0 • CONTROL CONFUSIONDea th of a ROLE CONFLICTre lationship UNIQUhNESS RESPONSES 4 o 12k10 i IONA L Strong bond o DEIINSIVE --- 0 COPING CD o FILLING -VACUUM Stronger bond COMMUNICATION PERMANENCE CDiel+ FIGURE 31 CD 56 DESCRIPTION OF GUIDELINES, LITERATURE CONTROL, LIMITATIONS, CONCLUSIONS AND RECOMMENDATIONS.
4.1 INTRODUCTION
The results of this study have been discussed in Chapter Three and relevant literature was incorporated in order to re-contextualise the findings.
The extreme jolt of a child's death is a major crisis for parents. The bonds of the couple relationship are severely tested due to the extremity of their experiences, both as individuals and as a couple. The feelings of loss of control often lead to a state of confusion. The parents respond to the emotional turmoil by feelings of loneliness, anger, blaming and guilt. The psychological coping mechanisms most often used to deal with the anxiety are repression, suppression and avoidance. Parents often respond to the emptiness of the vacuum left by substitution or replacement. The parents experience the couple relationship as changed. Just as some relationships are torn apart, other parents find ways to cope and become stronger.
Guidelines for the advanced psychiatric nurse practitioner will be deducted from the above in order to provide support to parents who have experienced child bereavement, both as individuals or as couples, as well as assisting them in mobilising their resources to facilitate the promotion of their mental health.
4.2 GUIDELINES FOR THE ANDVANCED PSYCHIATRIC NURSE PRACTITIONER TO PROVIDE SUPPORT TO PARENTS AFTER CHILD BEREAVEMENT
Parents were very specific in their needs. They spoke of a need for support from someone who did not share their pain.
57 "I think it's having people to listen, I think uhm...the hardest part I think, when you are getting support from the family is that they experience the loss in their way and they don't quite hear what you say as a parent...uhm, so it's very hard because they can't really support you...."
Leick, Davidson-Nielsen (1991:79) explain that parents can only support each other with difficulty and it is therefore important that they do not solely rely on each other. They both need - separately- to talk to other people about their grief. This places the advanced psychiatric nurse in a position to support, assist and facilitate the promotion of their mental health. As there are multiple losses involved, a cumulative impact may lead to the parents' resources being totally overwhelmed (Davis, et al.2000: 511).
Support may be in the form of counseling or psychotherapy, as reaction to grief does not manifest itself only as part of a present crisis. Grief takes time to heal. Some take several months and others take several years (Fawcett, 1983:154). As one parent stated:
"It is a pain that you carry with you, you cope better as you go along, but it never leaves you...."
Counselling involves helping to facilitate uncomplicated, 'normal' grief, whereas therapy would be appropriate for those with a complicated grief reaction.
It is the variables, not necessarily the individual, couple or family, that make bereavement and mourning complicated or not. Fawcett (1993:141) and Davis, et al. (2000:507) describe these variables as the meaning of the loss to parents, the level of emotional distress, unresolved earlier losses and attachment history, coping and communication styles, type of death, beliefs, support systems and personality types. Availing oneself of counselling is an aid to promote and maintain one's own mental health and the psychological
58 health of relationships. This is not a tacit admission that there is some personal incapacity preventing parents from dealing with grief on their own.
Although death affects each individual differently it continues to influence all relationships, the couple as well as the family, with equal powers. The family is an interactional unit in which all members influence each other. A systemic view is proven to be effective even when individuals are interviewed alone (Gelcer, 1983:501).
Counselling/ therapy involves a relationship, whether it is with the individual or with the couple, that is caring, honest, accepting and open. It is multidimensional dealing with human feelings, thoughts and behaviours as well as the past, present and future (Kottler & Brown, 1996:13). No two griefs are the same and a solution that works for one may not work for another. Each relationship is unique as is the construction and maintenance of each relationship.
The self is the crucial, the indefinable and the most variable component of a relationship with another. It refers to the experiencing process of the practitioner and reflects him/her as a human being. This includes observations, emotions, images and associations evoked. It is therefore important that the advanced psychiatric nurse practitioner is aware of his/her own feelings and experiences and remains reflective.
The ability to accomplish the complex task of assisting bereaved parents requires empathy and honest communication on the part of the advanced psychiatric nurse practitioner. Regardless of the kinds of communication exchanged socially or therapeutically in a tear, a simple phrase or timeworn clichés, it will have prolonged consequences for the emotional and mental health of the parents (Peppers & Knapp, 1980:55).
It is generally agreed the first responsibility is to stabilize the parent and help him/her minimize the anxiety brought on by the loss of a child. During the initial weeks and months following the loss, the advanced nurse practitioner
59 functions as a 'container' for the bereaved parent's intense and painful feelings. Containing and caring is expressed through the act of 'being with' (Swanson-Kauffman, 1993:152). This includes helping and accepting the parent's expression of feelings, emotions and experience before, during and after the loss of a child. Yalom (1999: 147) states that it helps most by engaging, by not shrinking away from anything said or did. It gives the advance psychiatric nurse practitioner the opportunity to understand their grief and their perception of the experience and to facilitate the relationship that meets the parents at the point of their need.
Engaging according to Yalom (1999:147.149) is not simply listening well, or encouraging catharsis, or consoling. It means that the advanced psychiatric nurse practitioner would get as close as s/he could and focus on the "space between us", on the here-and-now. Rober (1999:212) refers to the practitioner as part of the system as 'self-in-system'.
The here-and-now imparts a sense of immediacy and provides more accurate data than relying on the parent's imperfect and ever-shifting views. Relating in the here-and-now is a social microcosm of one's mode of relating to others, both past and present. As the relationship with the advanced psychiatric nurse practitioner unfolds, so is ways of relating to others unfurled. It provides a safe arena for experiencing and experimenting and accelerates the development of intimacy.
Narrative or the opportunity to tell their story provides the parent the opportunity to define their needs as well as providing a window into parents' relationships. Soricelli, et al. (1985:433) affirms that storytelling is a significant part of the bereavement process. Harvey (1996:6) explains that grieving involves the construction and the voicing of stories/narratives. It brings forth tears as well as laughter. Narrative conversation are interactive and always in collaboration with the parents consulting the advanced psychiatric nurse practitioner (Morgan, 2000:3.) According to Rober (1999:211) it provides for a space for the not-yet-said, the stories that have not been told.
60 Unni Wikan in Doctor A Frank's Workshop on Narrative Research (2003: Rand Afrikaans University) says the following: "'Story' is a near experience, probably a universal concept, that taps a universal aspect of living: everyone can tell a story, whereas only academics can find narrative. In telling my story, I am not just giving a coherent account of events. I also claim that this is what truly happened (from my point of view). The coherence I depict is not an artifact of my story; it's the essence of my life. Things cohere, even when they maddening jar. I experience my life through my efforts to make sense of events." Waddell (2002: 41,78) states that experiences that make sense do so because they are underpinned by emotional authenticity.
Peppers and Knapp (1980:77) state that it is important for parents to know that their emotions are valid and they need to be expressed and communicated. Ignored emotions often psychologically 'hi-jack' people, no matter how they try to stop them through conscious or unconscious processes (Schwartz & Johnson, 2000:31). This is a time for emotion, whatever it might be; emotions need to be expressed. For fathers crying does not invalidate manliness rather it takes a man to let others see him cry. White and Denborough (1990:103) explain the law of grief as follows:" Crying on the outside means that you are no longer crying on the inside. And crying on the inside drowns your strength."
The advanced psychiatric nurse practitioner is able to divest feelings and return to the parents a "thought about" and meaningful version of their pain. In thinking about these intense emotional experiences, which faces the parent, allows the parents to 'have' the experience (Waddell, 2002:91). The therapeutic context provides an opportunity to think about ways to keep memories alive and to think about ways to remember. The end of grief is not about severing bonds with the deceased child, but about integrating the child into the parents lives as well as social networking in a different way than when the child was alive (Klass, 1997:147). A child's 'personhood' is not extinguished by physical death; rather that 'personhood' is a legacy. (See: re- membering further in the chapter).
61 Fawcett (1993:149) states that it is important for parents to be able to communicate with each other in even the most intimate matters in their relationship. They need to let each other know what they are feeling and what they need and expect from each other. Unrealistic expectations and faulty assumptions hobble a relationship. Parents need to recognise that they will grieve at different times and in different ways. Both parents need to mourn as individuals. Stanley, Howard and Whitton (2002:660) are of the opinion that partners with more positive communication create an environment that allows for deeper levels of self-disclosure and acceptance of vulnerabilities. Schwartz and Johnson (2000:31) reiterate the fact that the degree of emotional engagement, rather than the number or nature of conflicts, defines the stability of a relationship. The quality of the relationship between a couple also determines the quality of the children's environment. The parents' emotional stability could either allow children to flourish or languish (Hendrix, 1997:158). Sharing brings down protective walls and increases connectedness but this needs to be reciprocated by honoring responses, respect, sensitivity and freedom of normative descriptions (from either a partner or the advanced psychiatric nurse practitioner).
White (1998:29 - 36) raise his concern regarding the normative descriptions often found in societies and in therapy and explored the metaphor of "Saying hallo" and its application to grief work. He found that people were usually well-acquainted with the normative map for the grief process that is informed by the "Saying goodbye" metaphor. When people are not able to "say goodbye", it leads to further feelings of failure, loss of self as well as the loved one and loneliness. Such is the despair that these persons experience, that establishing a context in therapy for the incorporation of the lost relationship is far more strongly indicated than further efforts at encouraging the forfeiture of this relationship.
Questions that seem most helpful in assisting a parent to reclaim an important relationship are the ones that invite a recounting of what they perceive to be the deceased child's or partner's positive experience of them. This could be noted as the experience of experience. Lost or forgotten knowledge's of the
62 self becomes available for a parent/partner to express. The circulation of self- knowledge is incorporated in their experiences to provide a thicker description of themselves and their relationships. In the process the parent introduces alternative views of the self, as a person, to other family and social networks. Others are engaged in the re-authoring of a parent's life, and thus bring new possibilities for their relationships. Secondly, their attitude towards themselves becomes more accepting and embracing and they come to regard and treat themselves with greater kindness and compassion.
"Saying hallo' does not mean the metaphor of "Saying goodbye" is totally discarded. The process of grief is an experience of both "Saying goodbye and then saying hallo". These metaphors are only helpful in as far as they recognise and facilitate the expression of the uniqueness of each person and loss and do not subject parents to normative specifications.
Davis, et al. (2000: 512) express their belief that one needs to move beyond the well-intentioned but vague assumption that the sharing of feelings in a supportive environment will necessarily promote recovery. Schwartz and Johnson, 2000:30) refer to the research of Lewis and Bucher (1992) and suggest that catharsis or venting of emotions without cognitive processing is not clinically valuable. I would encourage finding a measure of balance and integration of approaches to suit the particular needs of the bereaved parents in the place they find themselves in their experience. Although I do believe that once their pain has been explored and acknowledged, parents may be able to solve problems, find solutions or have the resources to maintain their own mental health. There are instances when a problem-saturated story predominates and parents are repeatedly invited into disappointment and misery. It is in the light of exploring alternative stories and unique outcomes, and not as a means of leading parents away from their experience, that the externalising of conversations of narrative therapy could be of value.
White and Epston (1990:39) explain that narrative therapy is based upon the belief that there is a lived experience or story that challenges the dominant story. Therapy is about bringing forth these alternatives stories. Problems are
63 viewed as separate from people and assume people have skills, competencies, beliefs, values and abilities that assist them to change their relationship with problems in their lives.
Externalizing conversations, which occur in narrative therapy, are ways of speaking, which separate problems from people. In externalizing conversations parents are identifying previously neglected but vital parts of their lived experiences.
The advanced psychiatric nurse practitioner listens to these descriptions and is interested in engaging in a conversation to situate the problem away from the bereaved parent — to externalise it. In the course of conversation feelings, problems between people, cultural and social practices and metaphors can be externalised. The parent may use the word grief or loss to refer to the problem, so these words may be picked up and used differently. A question can be phrased as: "How has the loss convinced you that you are powerless?"
White and Epston (1990:38) comment that these conversations open up possibilities for the parents to describe themselves, each other and their relationships from a new perspective. It enables the development of an alternative story as well as a thick description of themselves and their relationships. Unproductive conflicts between parents are decreased. It undermines the sense of failure and guilt often experienced as seen in Chapter Three. The authors conclude that it paves the way for persons to co- operate with each other and open up new possibilities for parents to take action to retrieve their relationship. As it frees a person to take a lighter, more effective and less stressed approach to "deadly serious" problems and stories, options for dialogue opens the door for promoting parents' mental health.
White and Epston (1990: 63) caution: 'While practices associated with the externalisation of problems enables the people to separate themselves and their relationship from such problems, these practices do not separate the
64 person from responsibility for the extent to which they participate in the survival of the problem."
Given the reluctance of many parents to seek help, White and Epston's (1990:79,83) 'written means to therapeutic ends' provides an important contribution. As the narrative mode encourages polysemy and the use of ordinary, poetic, picturesque and written language in the description of experiences, it opens up other ways for the advanced psychiatric nurse practitioner to create a context for transformation and new possibilities. This can be introduced in the form of letter writing and alternative documents.
Letters of invitation can be used when it is believed that it is important to engage a parent in therapy who is reluctant to attend. Letters for special occasions provide acknowledgement of events and their meanings. Brief letters are helpful in cases where persons are relatively socially isolated.
Recruiting an audience contributes to the writing of new meanings as well as encouraging parents to recruit a wider audience to enter into an experience of the audience's experience of new meanings, thus alleviating the sense of loneliness. Self -stories in the form of video-, and audiotapes, letters, poems and journals are all means of creating and recruiting an audience, not only in relating a "sad tale" but also of "success" stories.
Alternative documents include awards, acknowledgement of special /expert knowledge, declarations and self-certification, to name but a few. The incorporation of narrative and written means is of great help in the introduction of new perspectives and to a range of possible worlds, to the privileging of vital aspects of lived experience, in the recreation of unfolding stories and the enlisting of persons in re-membering and re-authoring of their lives and relationships.
Re-membering is not just about recollecting or being reminded. The hyphen between re and membering is significant to its meaning and its use in narrative therapy (Morgan, 2000:77). The author states that when people are
65 faced with a problem, they often experience isolation and disconnectedness from important relationships. The re-membering conversation incorporates and elevates significant people's contribution in the parents' lives as well as exploring and privileging these persons. It is possible to re-connect with the re-membered person through questions that begin with Who, What, When, Where, How and Why. It invites speculation about what the significant person would be thinking, what would have led them to these ideas, what they would say or why they would say this. Personally I have found a creative avenue for keeping memories alive, re-membering and remembering. I refer to scrapbooking. Not only is this a hobby but also a very creative way to testify to a life worthy of recording (my own and those who are dear to me). This is a therapeutic experience and I have drawn inspiration and hope from scrapbooking. It has also provided me the opportunity to connect with other parents, friends and complete strangers through sharing. To find out more regarding scrapbooking, visit the numerous sites on the Internet, scrapbooking shops or group meetings.
Most importantly re-membering and re-authoring contributes to hope for parents against what otherwise may be a "long gray night" (White & Epston, 1990:217). Annexure D provides an example of a certificate presented to parents to acknowledging their expert knowledge and contribution to this study.
4.3 CONCLUSION OF THE STUDY
This research started out as my curiosity and need to explore and describe my own and other parents' experience of the couple relationship after child bereavement. My own experience of the couple relationship after child bereavement, as a difficult and lonely process, raised my concern that other parents may have similar experiences and may be in need of support. Much of the literature on child bereavement quoted alarming statistics of these parents' relationships ending or in great difficulty.
66 The research question that came to the fore was: "How do parents experience the couple relationship after child bereavement and what can be done to facilitate the mental health of bereaved parents?"
The objectives of the research were therefore two-fold: Firstly to explore and describe a parent's experience of the couple relationship after child bereavement. Secondly, to describe guidelines for the advanced psychiatric nurse practitioner to support parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
A qualitative, explorative, descriptive and contextual research design was used as well as an authoetnographic strategy to find answers to these questions. In-depth, semi-structured phenomenological interviews were conducted with parents who met the sampling criteria for this study. The result of these interviews, my observations and field notes suggested that parents and the couple relationship were affected after child bereavement. These findings were described and verified though a literature control.
Based on the results guidelines were deduced and described for the advanced psychiatric nurse practitioner to support parents who have experienced child bereavement in order to promote their mental health through the mobilisation of resources.
The research questions have therefore been answered and supported.
4.4 LIMITATIONS
A limitation of this study was the difficulty in eliciting the participation of the fathers to describe their experiences of the couple relationship after child bereavement. Therefore my continued concern regarding the mental health of this at risk group of parents.
67 4.5 RECOMMENDATIONS
4.5.1 Nursing Practice
According to Botes (2001:9), nursing practice presents the first level of activity. The basic skills of both communication and interpersonal skill should be reiterated! Not only for advanced psychiatric nurses but strongly at the level of everyday nursing practice, for every nurse having contact with bereaved parents, whether in the community, clinics, hospitals or relatives and friends. A passionate plea for caring, involvement and acknowledgement is extended to every nursing practitioner in order to promote and maintain these parents' mental health.
4.5.2 Nursing education
As in society, the pressure to place death and bereavement at the lowest scale of awareness and intervention is seen in the attention it receives in nursing curricula. Both in basic and post-basic courses, it at bests sees limited time allocated to this subject and then only KUbler-Ross's (1969) description of the process of death and dying. These parents are neither dead nor dying; they experience the extremity of child bereavement. Footman (1998:294) warns that theories have the capacity to validate, as well as to make invalid, the experience of mourners. They require to be treated with caution by academics and practitioners alike. The guidelines generated from the findings of this study can be considered in the training of psychiatric nurses at both under- and post-graduate level as well as in the design of in-service education programs for health workers.
68 4.5.3 Nursing research
Further research is needed with respect to:
the evaluation of the implementation of the guidelines proposed in this study and the impact it might have on bereaved parents; and
further exploration of the encumbrances faced by fathers after child bereavement.
4.6 CONCLUSION
For a story to end there needs to be a beginning. I believe that there is no end to a story, merely a conclusion to justify the point where you are at the present moment.
I extend my sincere gratitude to each person who is part of my story and to all parents who so bravely shared their experiences. Also, to all parents, who in the future, through no choice of their own, may have to tell their story - a listening heart.
I conclude with the following quote by T. S Elliot (1957):
"We shall not cease from exploration And the end of all our exploring Will be to arrive where we started And know the place for the first time"
To every parent:
"...and we ourselves shall be loved for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even
69 memory is not necessary for love. There is a land for the living and a land of the dead, and the bridge is love..."
-Thornton Wilder (1927)
Salom.
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79 ANNEXURE A
REQUEST FOR CONSENT TO CONDUCT RESEARCH
80 RANDSE AFRIKAANSE UNIVERSITEIT RAND AFRIKAANS UNIVERSITY Posbus 524, Auckland Park 2006 PO Bin( 524, Auckland Park 2006 Republiek van Suid-Afrika Republic of South Africa Tel (011) 489 2911 Fax (011) 489 2191 +27-11 -4892911 + 27 - 11 -489 2191
DEPARTMENT OF NURSING SCIENCE Telephone : (011) 489-2649 Fax : (011) 489-2257 2003-06-04
Reference Number: 15/05/03 TO WHOM IT MAY CONCERN
TITLE OF RESEARCH PROJECT: "Patients; experience as a couple of child bereavement."
RESEARCHER: Ms. J.E. Maritz
SUPERVISORS: Prof. M. Poggenpoel
The Committee for Academic Ethics of the Faculty of Education and Nursing of the Rand Afrikaans University evaluated the research proposal and consent letters of the above research project and confirms that it complies with the approved Research Ethical Standards of the Rand Afrikaans University.
The study supervisor and researcher demonstrated their intent to comply with the approved Ethical Research Standards during conduct of the research project. •
Yours sincerely
Po% MARIE POGGENPOEL (PROF) CHAIRPERSON: FACULTY'S COMMITTEE FOR ACADEMIC ETHICS
81 RANDSE AFRIKAANSE UNIVERSITEIT RAND AFRIKAANS UNIVERSITY Posbus 524, Auckland Park 2006 PO Box 524, Auckland Park 2006 Republiek van Suid-Afrika Republic of South Africa Tel (011) 489 2911 Fax (011) 489 2191 + 27 - 11 - 489 2911 + 27 - 11 - 489 2191
FAKULTEIT OPVOEDKUNDE EN VERPLEEGKUNDE Navrae: J.A. Vermeulen : (011) 489-2550 Verw.: 9903172 Faks: (011) 489-2781 Datum: 2003-12-09
Mev. J.E. Maritz Platkroonlaan 10 Roodekrans ROODEPOORT 1724
Geagte Mev. Maritz
GOEDKEURING VAN TITEL
Graag deel ek u mee dat die titel van u skripsie soos volg goedgekeur is:
"A parent's experience of the couple relationship after child bereavement".
Studieleier Prof M Poggenpoel Mede-studieleier Prof CPH Myburgh Mede-studieleier Dr M Oberholster
Sal u asseblief toesien dat hierdie titel op die voorblad van u skripsie verskyn.
U aandag word op hierdie stadium op die toepaslike Universiteitsregulasies gevestig, waarvan 'n uittreksel aangeheg is.
Die uwe
J. ERMEULEN HOOF : FAKULTEITSADMINISTRASIE ANNEXURE B
REQUEST FOR CONSENT TO PARTICIPATE IN THE RESEARCH
82
RANDSE AFRIKAANSE UNIVERSITEIT RAND AFRIKAANS UNIVERSITY Posbus 524, Auckland Park 2006 PO Box 524, Auckland Park 2006 Republiek van Suid-Afrika Republic of South Africa Tel (011) 489 2911 Fax (011) 489 2191 + 27 - 11 - 489 2911 +27 - 11 -4892191
DEPARTMENT OF NURSING SCIENCE Telephone : (011) 489-2860 15 April 2003
Dear Parent
PARTICIPATION IN A RESEARCH PROJECT
I, Jeanette Maritz, am a M.Cur (Psychiatric Nursing Science) student at the Rand Afrikaans University. I wish to conduct a research project entitled " Parents experience as a couple of Child bereavement'. My supervisor's are Prof M Poggenpoel, Prof CPH Myburgh and Dr M Oberholster. The aim is to describe guidelines for the advanced psychiatric nurse to support bereaved parents. Your contribution will be highly valued as you are the expert on your lived experienced.
You are hereby invited to participate in the above-mentiohed research.
An interview will be held with you, as a parent, where you would describe your experience as a couple with regard to child bereavement. With your permission, a tape recorder will be used for purposes of facilitating data analysis. Strict measures will be taken in order to protect your anonymity and confidentiality. The tapes will be destroyed after completion of the research. Your participation in this study is voluntary, and you have the right to withdraw your participation at any stage of the research should you wish to do so. Your human rights will be respected at all times. The benefits are that you will have the 'opportunity to share your experience and in so doing help to support other bereaved parents. Should you require debriefing after the session, facilities will be made available to you. The research results will be made available to you on request.
Should you agree, you herby give consent to the participation in the research.
Signed at on the day of 2003.
SIGNATURE: PARTICIPANT
Mrs y E Maritz (Tel. No: 082 788 8703) MCur (Psychiatric Nursing Science) Student Researcher
83 Curtl. ciCt Ckt."0041-1" Prof. M Poggenpoel (Prof) Study leader P. Prof. CPH MyVg71 Co-Study leader
JA' Dr. M Oberholster Co-Study Leader Lecturer: Department of Nursing Science
84 ANN EXU RE C
TRANSCRIPT OF AN AUDIO TAPED INTERVIEW
85 TRANSCRIPT 26/03/03 45 minutes
Key: R Researcher P Parent
Speaker Dialogue Non-verbal response R J, you know that everything we discuss is confidential. The question I'm going to ask you is: How was it for you as a couple, when you lost your child? P In which way in particular? R ...If you could just reflect on your general experience...of the loss of your children and the effect that it had, or your experience as a couple of how it was for you then. P OK ..Uhm...trying to remember, uhm...it's.. shoe... J seems to Can I close the door?...ls it OK if I think? be thrown by the question. She closes the door. R Umm Nod P Thinking about what it was like...it was very tough, I mean...I think one of the worst things you ever experienced, uhm...I think its, I think, I think the hardest thing is to feel so out of control. Uhm.. and feel such pain, as you never felt before, uhm it's very difficult as a couple. I think for the man it's very hard because he's the protector and he feels very... unworthy or...that he hasn't actually fulfilled his role and as the mother as well you're the caregiver, you can't care for your child because it's taken out of your hands ...and you have to trust the doctors and nurses to do that for you, uhm... it's a very painful experience, it's ..no other words I can think of...just a very agonising, painful time .... R So, what I hear you saying is that it's painful for one because you are out of control, very powerless. P Yes. R There are certain role expectations both from the husband and from the wife. P That's right. R I was wondering of you could tell me a bit more about how it was for you having different role expectations and how that has impacted on you as
86 a couple when you lost your child. _ P ...Uhm...I think as a couple it impacts on you because...you are so thrown by what has happened, that you actually seem to lose perspective on uhm... what your role is again uhm...I think it just throws you so badly that you loose all sight of what you're actually doing. I think the future is suddenly taken from you, you looses that actual vision as where you are going to as a couple and uhm that's taken from you and I think that impacts on you as a couple... R Loosing you vision as a couple for the future, could you tell me more about that? P I mean you have, I've always said the minute you even conceive, you have planned 20 years down the line and I think when you loose a child you actually are robbed of that future that you foresee and uhm... you have no more... the future suddenly seems bleak, blank and uhm that the vision I'm talking about... the vision, the hopes, the dreams that you have for that child...gone and I think that you loose, that's the vision that I'm talking about, that you loose when you loose your child. R In terms of the vision for the couple? P Ja, look I think it must be very different for each couple uhm, for our experience you sort of... loose Sigh your way with each other because you are both in so much pain and it's a pain you don't want to bring out in each other, you don't want to hurt each other, so you kind ...of skirt around that issue. You don't face it. You just ...in a way make in a way like it hasn't happened. Try not to hurt each other, uhm... Starts crying Ja, no, I think... . Uhm...sorry, I forgotten what I was saying... . Long silence Silence, cries R You were saying:" try not to hurt each other..." P Ja, you try not to hurt each other and I think you, I think, so you tend to start to avoid talking about it as often as what you should, you actually try and just carry on very much and you do your own thing, you keep your pain to yourself and you tend not share Increase the pain with each other. You may find that your voice tone partner isn't at that point where they want to discuss it, so you don't; you keep it ... inside and then there's times when you do come together and talk about it, but you don't want to hurt each other unnecessary, you kind of keep it inside... . R Keeping the pain locked inside, what effect has that had on you as a couple?
87 P ...uhm ... Long silence I think it seems to,... it takes away that ... That light..not light heartedness, but that way of living that you had before, that carefree way of living, it takes that away...and uhm, it robs you of that, that's gone, so you are very cautious the all the time, you're careful of what you say, uhm... you have to be there for each other... it's not that same carefree, just ...enjoying life... . R Robbed of spontaneously just engaging in each other and in life, the spontaneity is gone? P Yes, ja very much so. You don't just get up in the morning and enjoy the day as it comes... you get up and you're faced with the pain...uhm...you have to carry that through the day...and it's very hard to bear... ja ... . Crying R It's very hard for you recalling. P ... It's easier to keep it locked up....and you think, you think that so many years that it's gone but it Increase actually hasn't... it actually is... it's actually just better voice tone to keep it somewhere, deep down inside, than Crying confront it, ...remember it ...in a way. I almost feel like it's two separate lives that you have lead. You get to that part where...you loose your child and you think then you start on another journey, you try and cut that part of your life away, not reflect on it, just carry on... . Long silence R I'm wondering what it has meant for you to keep certain parts locked away, ...kept it apart? P I think it's a coping mechanism. I think it is... I call it selective memory. You, you uhm... it's your way of coping. I think you'd go crazy if you had to dwell on it all the time. You do, you just cope by locking it away.... Try not to dwell on it and uhm trying to just Sniff carry on living as normal a life as you can... it's very much a coping mechanism, ja... R What effect has this coping mechanism have on you as a couple? P I think, it's, as a couple, there's that underlying... Very sad thing that each of you carry and you're never quite, maybe honest. You don't ever go there with each other because it's to painful and uhm... ja, I think it... maybe it takes away the honesty you have with each other... uhm you're ...not quite as open about everything. If you're feeling, if you're feeling...down or if you're feeling sad for any reason and you see your partner's fine, there's no ways you're going to burden them, you're not going to want to bring them down as well , because they have their days when
88 their feeling ...so you learn to be very respectful of each other, consider each other, but I think before you experience loss like that you were just so open and honest about everything so, I think that's the difference... . R What I hear you saying is that in some sense... uhm you also becoming the protector, where your husband was the protector . Where your husband was the protector of the family, you as the wife now, try to protect him from pain as well. P Yes, ja. R In a sense maybe taking over another role...not just of nurturer and carer anymore but also protector. P I think, I think you are the caregiver, I think you care for them, for their emotions, you try to bolster them up and not bring them down, so I think it's just a normal thing a woman does by caring, not just physically but emotionally...for everybody in her family you know...so I think that pretty normal...in that respect, ja... . R So protecting and caring for him, emotionally... . J is crying softly P Yes, ja... . Long silence R I'm wondering what effect it has had on you to protect and care for your husbands and be respectful of his pain.
P I think it can get, it does take it's toll... quite a heavy Very sad burden to carry... but I feel sure he's doing the same for me to uhm, but it, its... is suppose in a way it's tiring, it's emotionally tiring to carry it... . R You spoke about a burden, a heavy burden, can you tell me more about this burden? P Maybe a burden isn't the right word, it's just....the Sigh loss that you carry never leaves. Somebody once said that to me after R died that it can strike you, 5,10,20 years along. Uhm it's true... it's a pain that you carry with you, cope better as you go along, but Increase it never leaves you, so it's not a burden in that it's a voice tone bad thing, it's just the pain is for ever with you and sometimes the key gets turned and it unlocks that door and the pain comes out again but I think generally you keep it locked inside... but it... you ... people always say after you've lost, that it get „ easier...and uhm, it gets easier to cope but the pain doesn't ever go away. So I think the word burden probably is the wrong terminology. It's actually the pain that you carry that you lock away... Silence
89 R I am curious about the pain you as a couple, have experienced, where has it lead you as a couple? P Uhm, I think u become better people for it. I think You are... the good thing that comes out of it is that you are so... more aware of this, ...the trivial stuff in Sigh life doesn't matter... uhm... the major issues are the ones that are cause for concern and worry, uhm and you don't, you don't, you actually are more Sniff mature as parents, as a couple.... And uhm you are very respectful of life, the gift that you have of life and so you don't trouble yourself with little things, little irritants in life. You are concerned about the welfare of other's lives.. and so I think it matures you and I often felt afterward the kids died that I felt Sniff on a different level to other people in my age group and I think it's a thing, almost a maturing thing, that you go through and I think you basically see life for what it is, you see that to many people worry about minor incidents on the way, but you are always focused on the major, that is life, the gift that it is... . Long silence R If I hear you correctly there's been a lot of pain and it's been really difficult and it remains within you, the pain... uhm but that their has been some good. P Yes. R It has matured you and has given you a sense of what's important. P Yes. R And that's about life. P Ja, that's right, ja 20 second silence R Anything else that you would like to add? P Uhm... trying to think, it's a very complicated, complex experience and it changes all the time, it's the most amazing thing... uhm... Tongue click I think as I have said before it's just one of the hardest things that you ever deal with in you entire life... . R You mentioned changes, that it changes all the time. Tell me more about these changes. P I think as you learn as you go along you deal with it differently, and you ...it changes you know, it could be in the beginning what sparks it of is seeing children the same age and then.. you can change and it's something completely different that will spark of memories or spark of hurts...and uhm...that's why I say it changes. Uhm... You go through different stages. You go through stages where you want people around you, then you need to talk about it, then you don't want to talk about it...
90 uhm...and that constantly changes. There's times when you need to be around the grave, and then times where you don't go near the grave and uhm, I think that why, what I mean, it changes, the emotions change all the time and you're never quite sure 100% what you really need...it's a very complex situation and sometimes you find it hard to understand yourself. You don't even understand what to do with yourself. You can't even turn around and say to somebody what you need... you're so confused by it all... and that's what I mean it changes all the time, but it's not something you ever put down or walk away from... it's something that you carry with you permanently. There's not a morning that you don't wake up that you don't think of those children... not a day... it's with you all the time...and it's difficult... . Even now, I didn't think I'll get upset by talking about it...you think you're long past that, and yet it's there... . Long silence R Anything else you might want to add? P ...uhm...ls this going to be in connection with how Sigh nurses treat people, nursing staff? R The guidelines would be for the advanced psychiatric nurse, so people who have one their basic training, but there are recommendations for nursing practice, education and research, so it could... P I'm just trying to think, it must be very hard to actually nurse a child that's dying, and to deal with the parents, but I think it's, when you're around people who's in the process of losing a child, I think you have to be so respectful of those people, and you have to understand- when there's anger, that it's not directed at them and sometimes they really need the nursing staff, but other times they, they can't even stand the sight of nursing staff, it's everything they don't want to face and uhm, I think as nurses, to nurse these children... is a very difficult job to do, but I think at the end of the day you've got to be so respectful, so understanding, that whatever they find that day when they're nursing and caring for the child and for the parents to, that they can't take it personally because at that stage in your life you don't care who's feet you stand on and uhm, that it must be very hard for nursing staff to deal with that, but the pain is so great that you're not even aware of the things you are saying to...and uhm the only thing you can think
91 of....nurses have to be aware that that don't take it personally. You appreciate all the help you get but uhm,... it's like you're not even in control of yourself and uhm, sometimes you may hurt people and sometimes you may despise them being around you ....but it's not a personal thing it's the way Sniff you're feeling. The anger is so amazingly great .they are unfortunately on the front line, firing line of the anger so all I can say is that they understand Crying where it comes from, not take offence... .
R Do you have any suggestions for the advanced psychiatric nurse in dealing with a couple after they have lost a child or children? P Again, I think it's so different for each couple, it's again as I've said before, it must be very difficult because I know from other bereaved parents that some..., we didn't want to be bereaved parents and uhm, it must be very hard because each case is individual, no two I think are alike because each death is so different, each child's death is so different, it has it's own set of feelings. Guilt, anger, wanting to take revenge maybe if someone was involved in the death of your child. I wouldn't • actually know how to advise, how to advice on a thing like that. I just know from my part....we didn't Sniff want to really, uhm so soon after our child died, we didn't want to have people talking to us about it, because uhm just very painful to deal with uhm, we didn't want to go bearing our souls, laying ourselves open, people to talk to and uhm, but yet there may be bereaved parents that do want to, as the best medicine for them. They might want to talk as much as they can and get help. I think that as a parent you know when you need help and that you then approach somebody, I think maybe the one thing I can say is that advanced nurses that you would take into consideration, that just let that person know this is the help available, when you are ready, If you ever want to, it's there for you, uhm, not to push yourself on people... uhm... . R So in a sense I'm hearing the same request of respect. P Yes. R and understanding. P Ja. R for the unique situation. P Yes. R each couple may be in. P Ja that is different for everybody. There's
92 unfortunately no guidelines...there's certain stages definitely stages, differently that everybody goes through, but everybody's different. A lot of people love to talk about things and like you are saying that's where the respect comes in R I was just wondering if you refer to a lot of people want to talk and a lot of people don't. In your relationship as a couple, was it the choice of both yours and your husband not to want to talk? P Yes, immediately after we didn't, both of us didn't want to, we didn't want to be, we felt it was finished and we wanted to try and in out minds make some Increase sense of it and move forward for our daughter. We tone of felt we owed her a life and and we just wanted to, voice how can I say....concentrate on her and just carry on moving forward and uhm, but then there was a time that I needed to ...eventually get somebody to help me...but I had to be ready to do that. As much as people wanted me, told me about different places to go to,...I had to be ready to do it myself, ja...it's very difficult.... I am trying to remember just after you've lost your child what it's like...I think as Sniff parents in a way you're actually trying to escape the pain in some ways. For my husband was probably most probably throwing himself in his work and uhm, you use different ways to escape the reality of the situation and that must be very hard. Maybe some people go a bit to far to escape that reality and uhm, so depression is very hard to figure out, because when depression does set in you are so confused by everything it's very difficult time that is, very hard to, when you, when you, walk away, you don't want anybody to be involved in anything. You want to just walk away completely, yet you are left pretty much dangling and uhm not recognising your own symptoms of maybe going through depression and uhm if you don't having caring friends or family around you, you could actually fall through the cracks and that must be dangerous as well.. I don't know how they would deal with something like that, that must be very difficult, I mean that is a reality that can happen. R So in one sense you are asking people to stay away and let you be. P Yes Increase tone of voice R Respect it, but a sense of fear that you are left dangling. Maybe your own uhm problems occurring and not realizing.
93 P Ja. I think there's a lot of danger of... uhm I remember the big things you go through is uhm and again I, I was, have, I think I was experiencing depression, that feeling of you don't care if some motorbike comes from some side of....you actually get to a stage where you don't care if that happens to you uhm, that quite a dangerous time and if nobody recognises the symptoms in you, uhm that you could do something silly, you could maybe people do take their lives, but I do think it's very difficult because at the time you don't want people take any notice of you, there's a fine line... It doesn't matter how much literature people give you, you don't want to read it. It doesn't matter how many people tell you things, you don't want to hear it. Yet, it's such a uhm terrible stage of your life and you have no idea how to cope with it....so that's a very hard one, how do you cross that,... I don't know how people must do that...like I must say I was fortunate that I had people that recognised symptoms but uhm, I don't know how you do it if there's nobody to recognise it... . R So support is very important. P Support is important. Lowering voice But it's the right support, the right support. R Could you tell me more about what kind of support is right? P I think it's having people to listen, I think uhm...the hardest part I think, when you are getting support from your family is that they are experiencing the loss in their way and they don't quite hear what you say as a parent uhm, so it's very hard because they can't really support you because they're feeling the pain as grand parents or as uncles or aunts. They are dealing with their own pain and so... it's very difficult for them to support you. I think it's having people that can listen to you... and not say "0 yes I'm feeling that to". You want people to just listen...very much so, uhm,...you don't want to hear that they're feeling that to because they have to respect the fact, the fact that you are ...that child's Increase in parent. It is a different loss, you, you, as it is for voice tone them and yet you also want to respect that they are Cries feeling this as a grandparent or what ever...it is very hard. You need the support from your family, you need to know that they're there for you and yet they're experiencing their pain to. So as a family it can be very hard....and that's most probably where friends come in and they need to support you
94 because they are standing more on the outside. They see things more clearly that the family members do, but support is very important. It's funny how the times that we didn't want to see anybody and if nobody came, then we got hurt because nobody came. It's what I talk about, it being confusing, it...and don't really know what on earth you want, you're not sure what you want half the time and it changes. When I say about changing. Bereavement changes. Even in those first few days as well, one minute you need people, the next you don't want to see them and uhm... it changes all the time there as well...so I think it's knowing that there's people for you, that the minute you pick up the phone, they can phone you and listen and let you be able to pour your heart out and not give any..."0 yes, I understand". None of those sort of remarks like that because they don't, that hurts you that.. and I think even the different between different bereaved parents, I often think...I often feel in my capacity, I could never be there for somebody else that have lost a child, because my experience is so totally different from their experience... I don't know what they're going through...I have to be respectful of again, that again that they have a completely different experience...it hurts them in ways that it doesn't hurt me and uhm, ja.. I think it must be one of the most complex Increase situations to be able to counsel or be there for voice tone people, parent who have lost their children.... Silence
R You spoke about maybe your way of coping ...to some extent withdrawing from people and not really wanting them there, at a stage you experienced depression.. P Yes R You also mentioned you husband turned to work. P Ja. R Is there anything you can think of uh, that maybe your husband uses to cope or you to cope, that you haven't mentioned? That was the same or different? P For me my coping was TV; sounds weird but I became, I couldn't go to sleep. Nights were the worst...You can't sleep at nights, you dread nights and the only thing that could keep me going was TV because in the day you were busy, you had things to do, but nights were the worst and so you cope, I coped by using TV. That was my crutch to get through it. It removed me from reality, I didn't have
95 to think...because your mind is the worst thing that you have after you've lost a child uhm, because u think of everything you go through every bit...could I have done something differently, did you do something wrong...so ja, that was my means of Sniff coping was TV and being involved with my daughter . I was lucky enough that I had a child still uhm...with...Sean it was completely different; I had to fall pregnant pretty soon afterwards. I was busy, I had to go back to work, which was good and then I fell pregnant again and so I was busy... and like I say with Robert, I had Justine uh, I'm trying to think. Neil's was definitely work. It was his saving grace to be busy and I think everybody is escaping from letting their mind work. Everybody is trying to shut that off, uhm... so that it doesn't dwell on everything. ...I dunno what other people would use but this was things that we definitely used, ja.... Long silence
R Anything else you would like to add? P ...Can't think.... Crying Tape stopped R J, you've had a bit of a break to compose yourself and you said that certain things are coming back in flashes. Would you like to tell me about it? P It's just remembering how difficult it was as a married couple after you have lost a child — how difficult it is to share with each other...the grief that you are experiencing and you actually don't, you Increase tend to just go your own separate ways. How hard it voice tone is for a man...to.. Maybe even be around his wife,...and his home...that uhm, maybe his way of coping is to rather be away from it that to face it but it's something that changes your relationship forever as a married couple. I think it...it comes to a point where you actually don't want to carry on, you actually couldn't care less if you were married or not...but you either, you get to that stage where you make a choice, are you prepared to carry on pushing through even though it's very very hard to carry on and try and make a go of the marriage or Sniff just give up and I think that is, that is very difficult and it's something that we were lucky enough to plod on and carry on trying even though ...it's very hard and at times we didn't want to, but then again we were also very fortunate that we had another child that we cared for as well and we didn't want to Sad ruin her life, but uhm it's very difficult on your
96 marriage. It hurts, you're both hurting, you can't be there for each other and uhm... Tongue click Uhm.... Sniff, crying You have to really make a go of it; the marriage becomes very difficult because it's not the same carefree, ...happy go lucky couple that you knew before. You suddenly have to grow up and change and face reality....and I think you both change and that's hard as well. Maybe you married as fun, carefree people and these carefree people are now suddenly, you married to somebody who's very mature and maybe...very on edge, very Tongue click Maybe angry, have to deal with all the pain and you're not the same people you were when you got married. It makes it harder. You've both changed. You're not the same people again....and I think in a way you're both very bitter, you've been robbed of that... that's gone... Silence So we were just lucky that we carried on, but it, it never stops. Marriage is very difficult for most couples but I think even more so for bereaved couple... it's hard to make a go of it, very hard ...but like I say I think that we were lucky that we were married, it was for better or for worse and we decided to....carry on for better or for worse.... R So in a sense, not only did you lose your children but also the couple that you were once. P Ja, ja. You've lost that life. You've lost the life that Increase you had and it's a very different life. It's not the life tone of that you choose or dreamt about... uhm so you've voice uhm definitely, you've lost a lot more than just a child...uhm...ja.... Silence R Thank you, J.
97 AN N EXU RE D
CERTIFICATE OF ACKNOWLEDGEMENT OF PARENTS CONTRIBUTION
98 file matters
9A me/mow of dtetet and ogaco etatitz
oqoAan eatitz 9s state fulls acknowledged fot ALS conitibu.tion to the teseatch titled Patents' expetience ofa couple telationship aftet child beteavemeAt'
27/9103 ANNEXURE E
COMING HOME- Reflections on an autoethnographic approach
99 Please note: The following is printed unedited, as all errors, fonds and spacing has meaning.
CHAPTER 1
SELF is an ever-changing expression of my story, of being and becoming through language and story telling, as I continuously attempt to make sense of my world and myself (Rober, 1999).
This is my personal narrative of m y journey home. It includes my journey through research, therap y and my life as it is for me now. These strands are to interwoven for me to ever t ry and separate them. I believe it would do an injustice to even tr y .
Every action has meaning, even choosing the font in which I am t y ping. It is called
Papy rus and herewith m y story starts.
At the end of 2002,1 was asked what the price was that I was pa y ing for how my life was then. I could not give a verbal answer but a picture flashed through m y mind. A picture that I had seen in a midwifer y textbook ma y be seven y ears ago. It was a picture of a pap y rus fetus. This is a s y ndrome where one of a twin becomes a thin, papy rus-like fetus through not receiving blood. That is how I felt. I was a papy rus fetus. starved of nutrients and in man y respects dead!
The choice to go back into therap y was fraught with anguish! M y first experience in therapy was not a good one. I however realized that the person who posed the
9uestion cared enough to challenge me, the least I could do was to except the challenge — or emotionally die (could y ou be more dead than dead?).
Are you by any chance struck b y the repetition of the word "dead"? Well then m y research topic shouldn't come as to muck of a surprise: Parents' experience as a couple of child bereavement. Two of m y children died ; 1 8 and 15 y ears ago. I was ignorant and naive then. My family stories had me believe that the women in our family were strong. And that was what I thought I had to be — strong and fine!
After Jaco died I was successfull y sedated for the next 1 8 y ears. The time had come to wake up and face what I had been avoiding for y ears. The pain and hurt had turned into anger; the anger had depleted all m y energy . I could or would no
100 longer pretend. The price was too high. M y self-esteem had been eroded to an all time low.
I had for a long time realised that m y children's death was not all I had to mourn. I had my childhood to mourn — the loss of a voice and of acceptance. by choosing my topic of my research, I never intended to feed on other parents' grief. It was the last thing I wanted to do. I did know that death did no longer scare me and neither (Aid other people's pain. but m y own did. I hoped that through facing my children's death and other losses in m y life and m y ability to engage with those in pain, I could make sense and meaning of m y life.
Chapter one of my research had taken two y ears to write. I had a prett y clear picture where I wanted to go, but putting it into words was hard. To put it into an y logical format was even worse. I reall y had a problem to write the introduction.
Eventually I wrote it backwards and did the introduction last. Now that I think about it, I have done most things in m y life backwards. first having children and then study ing, first marry ing and then growing up, are but a few.
I am suffering from recurrent throat infections. It feels like the sadness is stuck in
one huge lump in my throat.
In order to bracket my own experience, I was re 9 uired to do an auto ethnographic
interview. I was asked my research cl uestion: how was it for you when y our child
died? This was taped, transcribed and anal yzed. It was one of the steps in facing
my pain. The following are m y reflections after the interview:
Personal, process and theoretical reflection: This was very hard, not that I expected it to be easy. In the past I could tell the story and that was all it was. What possibly made this time different is that I am more in touch with my experience and it therefore hurts more. My first thought after the interview was that I felt I didn't answer the question — I still don't know why. It was hard to talk at first — hence the uhm's, it seemed as if there was I block in my thoughts, just to get the words out. Immediately after the interview I made the comment that I didn't make eye contact at all during the interview. Reflecting on it, I possibly feared what the interviewer might see if she had to see my eyes, the depth of my pain and emotions. Although my conscious mind said I could trust her, maybe I feared that my pain was to great for her to contain. Also if she saw the extent of my
101 feelings that maybe I wouldn't be allowed to continue with this study. So maybe, once again I tried to be strong and do it the right way (sic). This possibly also explains the absence of tears. I have also become aware of contradictions. On the one hand I said that their death shaped who and what I am, yet not being able to answer who and what am I. This would however be in line with previous research finding that parent s find their identity severely shaken by their child's death. I have subsequently come to the following conclusion: Who I am not: I am not my children's death, that is not what constitutes me, my identity. They are a part of me, of my experiences, but not all and who I am. Yes I am a bereaved mother, but I am Jeanette. In transcribing I have come to realise how hard I am on myself.
Letter to my children Dear Pieter and Jaco I miss you both dearly! In doing this interview I feel I have at last given voice to who and what you stood for. I have also realized how I have punished myself in the years after your death for not holding you and for denying my pain. I know and I know that you know that there were more times that I did hold you, Pieter, than the once I couldn't hold you. Jaco, that I tried with all that I had to my disposal then. The once that you did open you eyes when I was there we shared a lifetime. You have taught my more about life and death than any book could ever teach me. I need to pass this knowledge on. If I can make a journey for one other person a bit lighter than what mine was, your death was not in vain. Your sisters know about you and also miss you. They often wonder what life with two brothers might have been like. Please know that you will never be forgotten (I think you know) maybe I am saying it to myself. Maybe I am scared that I may be forgotten or that my life will end up being meaningless. I honor you with each tear. Rest in peace. Always your mother.
I was now able to write the introduction to m y research.
I realised that the cl uestion did not focus on a couple's experience and was then changed to: Now was it for y ou as a couple when y ou lost y our child? I did not do a
102 one-to-one interview again but answered the c l ues-bon for m y self in writing. I realised that m y own marriage had died a long time ago. This was y et another loss would have to come to accept and decide what to do about, but not for now. M y husband agreed to have an interview. I asked him the same q uestion. Not muck came as a surprise. Much I have expected for a long, long time. At least it was now verbalised.
5ometking about the research 9 uestion still bothered me. It irritated me endlessl y using the term "lost y our child". To me my children were dead. They weren't something I had misplaced or lost in the supermarket. The literature I consulted mostly advocated for the use of the word 'dead' to assist in accepting realit y, to increase affective awareness and to pave the wa y for emotions. I was careful that it couldjust be m y 'issue'. I discussed it with m y husband, colleagues and with an expert who has worked with bereaved parents for 20 y ears. Most felt that it would be better to keep the wording as it was.
The pilot study interview was conducted on rieter's 20t k birthday. It was difficult but also had significance in that the stud y would be dedicated to my children.
After the interview I asked the respondent how would she prefer the 9 uestion worded and she also felt that the wording should sta y as it is. Reflections after the interview: I felt immense guilt for having opened up such intense and painful emotions. I kept on asking myself if I had any right to do so. It was difficult for me as it was Pieter's 20th birthday the day I did the interview. There were a lot of similarities between my experience and J's regarding the age of our children and our age. I could relate to some aspects but in others I felt worlds apart from her. Possibly because our histories (childhood, marriage) are different as well as personalities and how we chose to spend our lives after our children died.
I felt that no words could describe the pain and anguish that, had felt during the interview. If words were the building blocks for theories and models, and there were none to describe a parent's pain, then I could never develop a model on/for parental bereavement. If I continued with m y studies next y ear, this would not be m y topic. A model to assist may be....
103 0-1AFTER 2
The research methods are a pain and no fun. In the beginning it was hard to find a way of making it my own, but it's getting a bit better.
I get so frustrated when I have read something and then can't for the life of me find it when I want to use it.
MY buttons are being pressed severel y when people, in meaning well q uote theories and philosophers in order to help/ pacif y me. In a strange wa y I am reliving
5o many emotions that I should have when m y children died. My sadness is overwhelming at times. both for others and m yself. Some can engage but others
run like hell or try to shut me up because the y cannot handle m y sadness. In some respect I feel I can push because I know I have a safety net both from the University's side and from a therapeutic side. It is however hard and ver y painful
most of the time. I feel guilty because I can't cry as much as I feel others expect me to cry . I have found a vent for m y emotions in writing poems. They flow easy and with little effort and sometimes are fun. The y come to mind anywhere and are often written on serviettes or on the back of till slips.
I am apprehensive every time I have to contact a prospective participant for the
research. Some are eager at first but when y ou press for a date the y seem to back
pedal. As a bereaved mother can understand but as a researcher it is ver y frustrating. The fact that few men are willing to be interviewed concerns me greatly . am wondering at what price their silence comes. It got me thinking along the lines of may be Internet counseling for bereaved fathers as this might not be as
intimidating as a face to face interview (for next y ear).
I feel out of step with most people around me (also felt this wa y when my children died). Other people's conversations seem superficial and shallow. The topics for
conversation often feel trivial to me. I am delving so deep and I am busy with such a serious topic, that m y seriousness must also anno y them (my husband verbalises this).
104 C1-1APTER 5
The second interview was not as hard as the first one, although still emotionall y tiring. With each interview the sense of a great need out there becomes stronger and stronger. Also m y concern for the fathers is growing. The research is painful but I am enjoy ing it immensely .
I am thinking to include a list of names of the deceased children in the beginning of my dissertation ; to acknowledge not onl y the parents who were so brave to tell their story , but also to acknowledge our children. The first mother I asked if she would want this, was delighted. And so were the others.
measure every grief/ meet
With analytic eyes:
wonder,- weWis like mine
Or has an easier size.
wonder ifit hurts to live,
Or if they have to try,
And whether, could they choose between,
They would not rather die.
-Emily Dickinson
I sometimes feel that I let the interviews drift because of the above. The parents often voice aspects that I have thought but not expressed, or simpl y needing to hear what they have to sa y that resonates within me.
This week has probabl y been my lowest since starting with the research. I have done three interviews in this week. M y energy levels are at an all time low and I am very depressed and hurting badl y . The interviews plus the fact that Ka y na will be away for some time, has me in desperation. am craz y (excuse the pun) with fear of becoming clinically depressed again. If Prof. M y burgh had to see me now, he would definitely fall asleep. On the other hand, it might be one of m y dear friend, Kubler-
Koss's stages and that would be cause for celebration because it means movement. I don't have the energy to write observation notes after the interviews.
105 "We laugh, we cry
We live, we die
And when we're gone
The work/ goes on.
We love, we hate
We learn to late
How small we are
How little we know.
We hear, we touch
We talk, too much
Of things we have
No knowledge of
We see, we feel
Yet can't conceal
How small we are
'low little we know.
See how the time
Goes swiftly by
We don't know how
We don't know why
We reach to high
Yet fall so low
The more we learn.
The less we know?' Forgot who wrote and sang this son& the
worclsjust wrings so true.
It feels that I have more 9 uestions and fewer answers as each cla y passes.
I am feeling more energetic after the last (#) interview. The couple was more or less my parents' age and i their son's age had he not been killed. It was weird. The gentleman started cry ing during the interview and it felt natural to place m y hand on kis knee, he didn't seem to mind (I wish m y father would allow me to console him when he's hurting, but I guess that's wishful thinking). The lad y was a lovely , warm person and I felt privileged and grateful to have met them. I feel different when I
106 interview parents and they have not cried- can't S uite explain it for now. I was becoming fearful that it was something that I have been doing during the interviews, when the parents don't cry. I now realize that am not omnipotent — their feelin gs and tears are theirs, I don't own, orgistrate or have control over them.
I'm thinking of having a 'thanks giving' breakfast after the research is completed to thank every one involved -?-4-t k October. If I don't live until then and someone reads this please tell every one how grateful I am- to the parents, prof's, m y family and
Kay na. (No I'm not suicidal just realistic — death makes y ou that way).
# might have the answer to wh y I felt different with this interview. The couple was older. Throughout m y childhood and sulDse 9 uently my life, I have introjected
`older' people as good objects that could take care of me and contain me. Also after this interview I couldn't wait to get home to m y children, to hug them and tell them how much I love them.
OK, can't deny it any longer- I am depressed. I am not sleeping, m y ey es burn, it is harder to get up in the morning and it takes all the will power I can muster to get through the cla y . I have panic attacks, I do not contact an y one and I am scared
shitless. I feel that I am falling and picking up so much momentum, that the safet y
net is in shreds. I see Ka y na holding her hands out to catch me, but the impact kills
us both. This is worse than death. I tried so hard ; I'm so sorry, so sorry ...
In transcribing the interviews, have a sense of missing so muck more information
that is given in other forms, such as not completing sentences, thought blocking,
ect. It frustrates me that I do not have ade 9 uate knowledge and skills to really
harvest all that is there. k e May 2005: Deja vu: This is no illusion ; have been here before. I have felt before hurting so muck that y ou would surely die. It is a pain so deep and it hurts
so much — there simpl y are no words. It feels with every heartbeat that y ou cannot
possibly live through the next beat. If I could I would rather rip my heart out and
have it pulsating next to me, until it stops. I feel desperatel y alone because I don't
feel others can/could understand. I can't explain to others because it is too painful
to try and put words to something that hurts so deep. I feel overwhelmed and
107 depleted by what is surfacesing in therap y, my research, my work and my marriage. but be damned if i give up on therap y or my research.
16/5/O3 - Yalom (1980:354) put's in words how I feel toda y when he describes intrapersonal isolation as resulting whenever one stifles one's own feelings or desires, accepts 'aught' and 'should' as one's own wishes, distrusts one's own j udgement or buries one's own potential. Me in a nutshell.
Vasgevang in die kokon van nag is ek Toegespinde papie.steeds met U in gesprek. Lk probeer u wiL in die donker uitpluis. Cod, maar U hou my gevange in die dodehuis Van my verLies. My opsteiering in die lug Teen u afwesighied het my verslae terug Laat keer na die goue uitgespeeLde tuig \Vaarin U my inknieL en tot afsondering buig. hier voed ek op herinneringe. Voorsiener. Ingekrimp binne u beskikking. kleiner As 'n wurm, efemeer. Tot rou sy gesekreer. 6yspoor Tom Couws
Rabbi aphorism: "If I am not for m y self, who will be? And if I am onl y for myself, what am I?"
26/5/0) Reflections of my last interview: I sometimes wonder if I disclosed too much of myself in class. Sometimes I don't want to relate m y own story , but the fact that I did, helped one person to tell kers and break her y ears of silent suffering. It was worth it. The guilt that I felt with the first interview now seemed pale b y the sense of helping another through my research. This research has cost me in certain aspects, but I am not sorr y for it. Rose's story took me the full circle and I salute each bereaved parent — the y are very special people. My gratitude.
108 I/7/03 It has been longer than a month. I have not written in this time although I have been drawing and painting. have decided to divorce. It has been ver y, very hard. Not just the decision but keeping to it. It has been agon y to watch the people closest to me hurt, to live with m y guilt and keep a brave heart despite feeling so utterl y confused and bewildered at times. It is been difficult to see another counselor in Ka y na's absence. I am not sorry for it though. It's just that say ing goodby e every time is still not eas y for me. I have had the delight of three day s awa y in absolute luxury and pampering. The experience has been wonderful and a source of muck needed rest, tranc l uility and hope. It was about and still is of developing a mind of my own, trusting m y instincts. "It is learning from other s without merel y becoming like them, and imparting to others without seeking to bind them. It involves conflict but also limitless possibilities." Waddell (2002:250).
"for life need not be a vale of tears but rather a vale of Soul-making, the process on which is founded the growth of the mind, the development of personalit y "
(Wadde11,2002:250).
20/7/03 There has been many changes in m y life the past few weeks. All of them hard but not bad. I have however a sincere wish for closure and moving on regarding relationships and m y children's death. They have all been and will be a very integral part of me but I need to go forward. It has given me increased levels of energy and hope, for which I am grateful. I have decided not to continue m y studies next y ear. I would like to invest more time in m y self, my children, developing
109 creatively and in growth. 0 yes, and watching the grass grow. I am hoping to find a
home.
27/8/05 On the academic side, this chapter is driving me nuts. It is too painful to
engage with the data anal y sis for an extended period of time. This is causing m y work to proceed very slowly and I am growing fearful that I made not complete in time.
My divorce is a painful and agonising experience. At this stage too painful to
express in words. I have bought a house and am looking forward to making it a
home.
"Things cohere, even when they maddeningjar, I experience my life through the m y efforts to make sense of events." ((Jnni Wikan).
1 9/9/05 — My divorce became final toda y . No words as y et. A jumble of relief, loss, anger and pain. I have however been able to write the conclusion of my study.
"Corn pletion of a process, whether a relationship or grief, is in itself a kind of loss.
110 CHAPTER+
put chapter 5 aside for a while. I simply became too stuck and confused. It is hard to keep at it. I am tired and the stamina to continue is just not there ....Mercy!
back and forth between the chapters....
nd 50/9/05 The stud y is complete. I had to complete it before the 2 of October
(taco's birthda y) and the 3 rd October (would have been m y wedding anniversary).
I have done it!
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