Bereavement Support for Families Following the Death of a Child from Cancer: Experience of Bereaved Parents Natarlie deCinque, GradDipAdvSocWk, BSW Leanne Monterosso, BNursing (Hons), PhD, RN, RM, NNT, FRCNA Gaye Dadd, MNursing, BSc, RN Ranita Sidhu, BScOT Rosemary Macpherson, CN Samar Aoun, BSc, MPH, PhD

ABSTRACT. This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal grief, personal Natarlie deCinque (E-mail: [email protected]), Gaye Dadd, Ranita Sidhu, and Rosemary Macpherson are affiliated with Princess Margaret Hospital, GPO Box D184, Perth, Western Australia 6840. Leanne Monterosso is affiliated with both Princess Margaret Hospital for Children and Edith Cowan University, Pearson Street, Churchlands, Western Australia 6018 (E-mail: [email protected]). Samar Aoun is affiliated with the School of Nursing and Public Health, Edith Cowan University, Pearson Street, Churchlands, Western Australia 6018 (E-mail: [email protected]). The researchers extend a heartfelt thanks to the parents who participated in this study. The authors also acknowledge Dr. David Baker and the Oncology Total Care Unit at Princess Margaret Hospital for supporting this study, and Ms. Lynn Oldham, the research assistant, who carried out these sensitive interviews with compassion and understanding. Edith Cowan University, the Malcolm Sargent Cancer Fund for Children (WA), and Leanne O’Dea Funeral Directors are gratefully acknowledged for their financial contribution to this study. Journal of Psychosocial Oncology, Vol. 24(2) 2006 Available online at http://www.haworthpress.com/web/JPO  2006 by The Haworth Press, Inc. All rights reserved. doi:10.1300/J077v24n02_05 65

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coping, concern for siblings of the deceased child, hospital bereavement support, community supports and unmet needs. Parents identified the need for more supportive contact from hospital staff during the palliative phase and following the child’s death, early provision of information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents, and formal grief support for siblings. Areas for future research include exploration of parents’ wish to become involved in activities to help others, bereavement support for siblings, the level of contact with the hospital unit that may be therapeutically beneficial, and parental behaviors associated with accessing both hospital and community-based bereavement supports. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Website: © 2006 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Bereavement, parents, pediatric, oncology, hospital bereavement program, grief, palliation

INTRODUCTION The impact of childhood cancer on the patient and family is devastating (Brown, 1989) and may significantly affect their emotional and physical well-being (Sloper, 1996). Recognition by health care professionals of the overwhelming impact of the childhood cancer experience on families has resulted in the provision of psychosocial support in conjunction with medical intervention. Consequently, pediatric oncology unit staff work with families to provide support from the time of diagnosis, through palliation, and following the child’s death. It has been documented that provision of bereavement support can positively impact on a child’s death (Rando, 1983). Health care professionals are well positioned to facilitate positive family grief experiences because of the supportive relationships they develop with patients and their families (Heiney et al., 1996; Johnson et al., 1993; Stewart, 1995). Grief following the death of a significant person in one’s life is acknowledged to be a complex process (Parkes, 2001). Parental grief has been described as severe, intense, and prolonged in duration (Rando, 1985). Hospital-based bereavement support programs in the paediatric setting are a relatively recent development and reflect both an acknowledgment by health professionals of the complexity of parental grief, as well as the role they have in the provision of support for bereaved families.

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Current literature describing the development of pediatric hospitalbased bereavement support programs reflects limited use of the theoretical underpinnings of grief both in general, and those specifically relating to the death of a child (Buchanan et al., 1996; Burke & Gerraughty, 1994; Evans et al., 2002; Heiney et al., 1993; Johnson et al., 1993; McClelland, 1993; Ruden, 1996; Stewart, 1995). There appears to be little formal consideration of what parents themselves may identify as support needs, and how this information is integrated into conceptual frameworks used to develop hospital-based bereavement support programs. In addition, there is a paucity of literature that discusses evaluation of such bereavement programs. Together with the family and community, the hospital treatment unit shares the responsibility for provision of bereavement support. However, the extent of the role and relationship between each partner has not been well described in the literature. Specifically, the minimum or optimal level of hospital participation is unclear. Moreover, it is important to acknowledge that it is not possible from a practical perspective for the hospital treatment unit to be involved indefinitely in the provision of bereavement support. The bereavement program provided by the Oncology Total Care Unit (OTCU) at Princess Margaret Hospital (PMH) in Perth, Western Australia, has been evolving since the unit was established in 1984. Services in this program have included the coordination of palliative care management, supportive counseling to parents and siblings, a medical debriefing, a written bereavement package, an annual sibling camp, and referral to community agencies. In 1999, health care professionals currently working in the OTCU recognized the bereavement support program they provided was not evidence-based, and that support provided to individual families varied. In order to provide bereavement support that is evidence-based and modeled on best practice standards, a 3phase study was undertaken to determine the bereavement support needs of families whose child has died from cancer at PMH. Phase 1 determined current practice relating to hospital-based bereavement support programs. Phase 2 identified the experience and needs of parents who have received hospital-based bereavement support following the death of their child from cancer. Phase 3, yet to be undertaken, will develop, implement, and evaluate a hospital-based multidisciplinary model of care for families during their child’s palliation and following their child’s death. In Phase 1, a survey of all Australian and New Zealand pediatric oncology units (n = 10) was undertaken to determine the current prac-

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tice in hospital-based bereavement support programs (deCinque et al., 2004). Survey findings showed the majority of pediatric oncology units in Australia and New Zealand provided dedicated multidisciplinary bereavement support services. There was variation in services provided, however many hospitals offered bereavement groups, counselling, financial assistance with funerals, remembrance ceremonies, and staff support. Findings indicated a need to further develop bereavement programs, improve staff education and support, and increase the availability of resources in this area. This paper describes Phase 2. In 2001-2002, a qualitative study with bereaved parents was undertaken using a narrative approach to explore the experiences and needs of parents who had received hospital-based bereavement support following the death of their child from cancer. METHOD Design Narrative inquiry was adopted as the methodological approach for this study for a number of reasons. Individuals make sense of life and life’s events by telling the story of those events (Sandelowski, 1994). Lives can be understood, revealed, and transformed in stories and by the very act of storytelling (Polkinghorne, 1995). In-depth exploration of an individual’s experience through their stories allows researchers to gain insight into the way human beings understand and enact their lives about the phenomenon being explored, in this case, parents’ experience of bereavement and support following their child’s death from cancer (Sandelowski, 1994). Understanding the narrative context of parents’ experiences can provide a framework for approaching parents’ and families’ bereavement support needs holistically, as well as revealing options for bereavement support services. Whilst this is a sensitive area, it was anticipated that giving parents the opportunity to talk about the whole event of their child’s death and bereavement would be both beneficial and therapeutic (Dyregrove, 2004). Furthermore, narratives can provide a medium for the education of both parents and health carers, and may also expand and enrich the research agenda and our knowledge in this area. Ethical approval to conduct this study was obtained from the Committees for the Conduct of Ethical Research at Edith Cowan University and PMH.

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Sample As recommended for studies using this design, a small homogenous group of parents was used to elicit common shared meanings of parents’ experiences (Field & Morse, 1985). The researchers recruited parents whose child had died at the study setting during January 1997-December 1998. This time frame was chosen because it was felt by the researchers that parents would have had sufficient time to consider and recall the support they received during the bereavement period following their child’s death. Parent groups of 24 deceased children were approached to participate in the study. Parent groups included both biological parents, whether they lived together or were separated. Where both parents of a deceased child agreed to participate, individual interviews were conducted. Saturation of themes was achieved after completion of nine interviews, and no further interviews were undertaken. Procedure The OTCU database was used to identify potential participants. An introductory letter from the director of the OTCU and a study information sheet were sent to all eligible parents. Parents who wished to participate in the study were asked to return a signed study participation form indicating their permission to release their name and contact details to the research nurse. Parents were encouraged to contact the researchers, if they had questions or concerns about the study. The research nurse contacted parents who agreed to participate in the study by telephone to arrange a convenient time and venue for the interview. The research nurse was an experienced palliative care nurse who was sensitive to issues of loss and grief. An unstructured interview format incorporating four open-ended questions was used (Table 1). All parents chose to be interviewed in their home. Consent forms were signed by all parents prior to interview. Data Analysis Narrative analysis was used to understand the parents’ narratives of the loss of a child and the ensuing bereavement period, and how these events were interpreted and enacted in parents’ everyday lives. There are a number of different views regarding how narrative analysis should

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JOURNAL OF PSYCHOSOCIAL ONCOLOGY TABLE 1. Interview Guide

1. Tell me a little about (child’s name) illness.

Prompt What about the last few days of (child’s name) life? 2. Thinking back to the time after (child’s name) death, what was that like for you?

Prompt • What helped you and your family during the immediate period of your loss? • What wasn’t helpful during this time? 3. Reflecting back, what things were done by the ward and/or PMH in general, that helped you and your family at the time?

Prompt • What other things could have been done for you and your family that would have been helpful? • Was there anything the staff in the ward and /or PMH did at the time that wasn’t helpful? 4. Are there any other suggestions you can offer that may be of help in the future to other bereaved parents?

be conducted, however, there is no “binding theory” of narrative analysis, thus leaving this approach open to interpretation (Sandelowski, 1991). Polkinghorne’s method of analysis was selected as it was congruent with the philosophical approach to the inquiry (Polkinghorne, 1995, 1998). In this approach the researcher inductively identifies the core themes or categories from the data, recognizing that individuals interpret their lives through experience and, that meaning can, therefore, be revealed in their stories. This thematic analysis approach required interpretation of the stories. Data were analyzed by two of the study researchers (ND, LM). The nine interviews were transcribed, verbatim, as soon after the interview as possible by a professional transcriber. These interviews were checked for accuracy by the researchers against the original recordings. Each transcript was read in its entirety to gain an overall understanding of the data. The transcripts were subsequently read line by line looking for repeated themes; the search being guided by the research topic, by the interview protocol, and by “what” the participants said. When a theme was identified the passage was marked with a colored highlighter, labelled in the margin, and indexed on the front cover of the transcript. This process was continued until all the major themes had been identified and indexed.

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RESULTS Demographic Profile Nine parents (six mothers and three fathers) participated in this study. This number represented both parents of three children, and one parent only of another three children. All parents had at least one other living child. Parents resided in the metropolitan area of Perth (Western Australian), were aged over 18 years, and were able to understand and speak English. Demographic and clinical details of deceased children (e.g., diagnosis, treatment received, age at diagnosis, and time from diagnosis to death) varied. Four children died at home, and two children died in hospital. Main Themes from Interviews While the focus of this study was bereavement support, it was important that parents were given the opportunity to tell their child’s cancer story from the beginning and at their own pace. Parents’ stories encapsulated not only their perspective of their child’s cancer journey, but also their own experience as a parent of a child with cancer. This provided the context for exploring parent’s bereavement support needs. It was evident that parents’ experiences of their child’s cancer diagnosis, treatment, and death were still central to their world. As well, parent’s perspective of their child’s cancer journey appeared to be a factor in the parents’ grief process. Many parents went into significant detail about the diagnosis and treatment their child received. Their experiences were recounted in a seemingly factual and sequential manner. Their recollections were vivid, and in many cases it appeared that parents were still very immersed in the events of what many described as a traumatic experience. Six prominent themes emerged from parents’ accounts of their child’s palliative phase and subsequent bereavement. These included (1) personal grief, (2) personal coping, (3) concern for siblings of the deceased child, (4) hospital bereavement support, (5) use of community supports, and (6) unmet needs. Names used in the following thematic descriptions are fictitious. Personal Grief Throughout the interviews parents reflected on a wide variety of feelings they experienced as part of their grieving. These feelings included

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shock, pain, emptiness, guilt, anger, and intense loss. One mother described her sense of what her grief felt like in the following way: The degree of anguish for me in a picture form was like this umbilical cord, the black background and the umbilical cord just being cut off. And that sense of her being pulled away from me. All parents talked about how they continue to experience many of these feelings of grief in their present lives. For many parents the pain of their grief was intense and enduring as reflected in the following comment: They (friends) don’t understand, it’s not like you can take a Panadol that takes the pain away like for a broken arm or toothache. This is a pain that aches for a long, long time. Even now there will be a song or something and it will just bring it all up and bring it all back in front of your face. Many parents acknowledged that even after four years since the death of their child, their feelings remain intense and their grieving was central to their daily functioning: Even now four and a half years on, it’s very difficult. It’s hit me that Ryan’s friends are getting engaged and going to get married and have children and I am going to miss out on grandchildren. I’m missing out on a daughter-in-law. Some parents stated that friends and family members often did not understand they were still grieving and did not feel comfortable enough to talk about the deceased child. For example, one mother said: The hardest thing I find is we (immediate family) often talk about her but other family (extended) members never do. We say something about Kate and they try and skirt around it. I suppose they think that if we mention Kate it will upset us. I find it more upsetting if people don’t refer to Kate, as if she is not part of the family. Personal Coping Parents identified a number of strategies they used in their grieving. Almost all parents made some mention of how their personal faith and

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beliefs about death had assisted in their grieving. This is demonstrated by these two comments: And then her spirit left her body and came to me and asked me if it was alright for her to go. I honestly believe that life does not end when a person dies, if I did I don’t know how I’d cope. I really don’t know how I’d cope. Because I don’t believe that death is the end, it makes it easier to cope. Some parents identified their experiences of grief differed from that of their partner. One mother described how she felt lost and experienced difficulty in “doing anything,” while her husband “threw himself into sport and work.” Another mother described the difference between her personal coping, and that of her husband in the following statement: I often used to refer to her bedroom as ‘Oh that’s Kate’s room’ and he’d (husband) say its not Kate’s room any more it’s a spare room. I don’t think my husband realized what an effect it would have on me. I think it’s his way of coping I suppose, and saying well-she is not here, it is not her room any more. In the beginning it was more than hurtful, now I suppose I am getting used to it. A common coping strategy used by fathers was to keep busy by working and participating activities such as sport. Two fathers spoke of their own coping strategies of keeping themselves busy: Sometimes I think you are better off doing things than sitting at home crying. I went back to work. I think this helped tremendously. It was not easy for the first day or so, but after you have seen everybody and got back into the swing it does help. I think you are forced to take your mind off your own sorrow or your own problems. That’s really helpful too. I’ve taken all these jobs on. The jobs are keeping me motivated and I am learning the piano. I find that’s the only way I can keep myself going. If I sit here I will go nuts. Many parents described ways in which they have continued the bonds with their deceased child. Some parents described planning special activities on anniversaries, memorials such as a plaque in the garden. Some parents talked about how they felt it was important to maintain

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their child’s presence by acknowledging the life and existence of their child in conversation, thinking about their child and fondly remembering them. Some parents found comfort in continuing to talk to their child. Some parents felt it was helpful to be emotionally supportive to other bereaved families. They believed they had something significant to offer from their own personal experience. Other parents expressed a need to provide practical assistance to the oncology ward (e.g., equipment) to improve conditions for other families. Concern for Siblings of the Deceased Child All parents commented they had not provided the usual amount of attention to their other children during their deceased child’s treatment. Many parents expressed feelings of regret, however, they acknowledged they had to prioritize their sick child’s need for support and care. When discussing this issue, one mother said: You concentrate the majority of your effort and time on one child and you don’t mean to, but that’s the way it happens. And then the other child feels they have been neglected. Parents also commented they often continued to overlook the needs of their other children following their sick child’s death. It seemed that many parents were only able to focus on their own personal grief. Their ability to provide support to their grieving children was, therefore, limited. This is described in this mother’s comments: It’s very difficult as a parent to deal with your other children as well because they are hurting too, but you’re hurting so much that you don’t think of the other children. I thought I would grieve for so long that by the time I finished I was scared I was going to miss my other children growing up as well. I regret that because I did grieve very, very deeply. I can remember my younger son saying “Will you ever stop crying mum?.” This same mother stated that her other children were aware of their parent’s grief and distress, and adjusted their behavior so they did not further add to their mother’s distress. Parents acknowledged their other children grieved, sometimes without recognition and/or parental support. Some parents expressed appreciation for the bereavement support

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that was provided to their other children by the hospital and community agencies. Other parents commented there needs to be more support available for siblings of a deceased child, particularly as parents are often unable to meet their needs. Hospital Bereavement Support Most parents (n = 8) overwhelmingly conveyed the importance of the relationships they had established with the oncology unit staff. Many parents described staff members who had shared this traumatic experience with them as family. A striking feature was that the majority of parents felt a sense of abandonment by the hospital staff during the palliative stage and following their child’s death, demonstrated by these parents’ comments: It’s just at the end of the day I felt we all just got left . . . when my son died it was like “see you later.” I think the hardest thing is moving away from the hospital-that is difficult, that is just so difficult. It’s like a security blanket and then all of a sudden you’ve lost your child and you’ve lost your security, and you come home and you are at rock bottom. Some families felt let down that the oncology unit staff didn’t visit more frequently during their child’s palliation care. One mother also commented that no member attended her child’s funeral and found this very disappointing and hurtful. As shown in these two comments, many parents felt that contact from oncology unit staff both during palliation and bereavement was important, and were disappointed they were not contacted by hospital staff more often. But then it would have been nice if they (hospital staff) had said “Come for a check-up” or-just don’t drop her like that. I think that’s the biggest mistake you can do. I thought that I’d have the phone call and they’d (hospital staff) say “how are you coping?” and that sort of thing. So it was very different to what I expected. While a number of parents identified that supportive contact from oncology unit staff following their child’s death was important, parents acknowledged they had not initiated this contact.

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Some parents felt the hospital had not provided them with enough information about death and bereavement. Parents acknowledged that discussion about death during the child’s treatment and palliative phase was a difficult topic. Parents were not always open to discussion about this painful issue and in many ways wanted to maintain hope as seen in this comment by one father: The kids themselves would talk about dying. The parents didn’t want to accept that. We didn’t want to talk about it. In hindsight, many parents acknowledged they would have benefited from more information prior to the child’s death, as stated by this parent: I think if they (hospital staff) could get the parents on their own and explain to them the process of dying, the process of the actual cancer taking over and the reactions. I know it’s hard for them . . . I don’t know how they do it but I think I would have liked to have understood the process of the whole thing. Another striking theme was parent’s desire to have had more contact with other bereaved parents as shown here: Other parents from the bereavement group would come out and have a coffee or have a chat and reassure me. I found that was very, very helpful to know that I could talk to somebody else who had lost their child and had experienced losing a child. . . . You do hold back your feelings and you need somebody else that has been there. Some parents felt the oncology unit should link them with other bereaved parents who could offer support. This is reflected by this mother who stated: I think there should be someone tied up with the ward that has experienced it. I think at the end of the day it will help you cope with the situation better. There should be someone there who understands that it’s a terrible thing to lose a child. Community Supports In general, parents indicated they had only minimal contact with community bereavement support services. Three parents described how

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they sought grief counseling from private therapists. However, two parents were dissatisfied with their experience. And I also strongly recommend that they be very careful about the counsellors that they go to because there is a lot of counsellors out there but there’s very few, very few who can really assist. And I mean in a concrete way with skills and, and in a way that they can ask questions that go down deeper than just the bereavement because the bereavement is the top layer. One parent spoke of support from their parish church. Our parish priest was marvellous and Sister Margaret. They came down and helped organise the funeral and they knew what they were doing and that was a great help. Two parents commented on support they received during the palliative phase and following the death of their child from a community-based palliative care agency. Unmet Needs In addition to previously discussed unmet needs, some parents highlighted some further areas of unmet need including marital support regarding how to work through grief as a couple; grief support specifically targeted at fathers; I think my husband would have liked to be able to talk about it more to other people. Women talk a lot to each other. At work, he wouldn’t really share too much, just the bare outline. And I think that he might have liked to have gone to a support group. respite and practical support during the palliative phase; It would have given me a break, I could have done things. I could have been stronger for her, I could have fought the battles. and information to extended family and friends on loss and grief, including strategies for providing support to grieving parents and families.

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DISCUSSION This study explored the experience and needs of parents who have received hospital-based bereavement support following the death of their child from cancer. Findings were consistent with the proposition that grief is a personal and unique experience (Rando, 1993) that involves a range of emotions including pain, anger, guilt, loneliness, anxiety, and emptiness (Parkes, 1996; Worden, 1991). The work of early grief theorists identified grief as a linear process involving a number of stages that led to grief resolution (Freud, 1917; Kubler-Ross, 1969; Parkes, 1996; Raphael, 1984). Our findings concur with a more contemporary understanding of parental grief, demonstrating that parental grief is particularly intense and enduring (Rando, 1985, 1993; Sanders, 1995; Schwab, 1992; Spooren et al., 2000; Videka-Sherman & Lieberman, 1985). Many parents in this study spoke about a lack of understanding by their family and friends, as well as an associated sense of isolation or lack of support. These findings coincide with Worden (1991) who stated that family members and friends often do not know how to respond to the bereaved. As reflected in the literature (Rando, 1993; McKissock & McKissock, 2003), our study also revealed gender differences in grieving styles and coping strategies. Fathers were more inclined to focus on work and sporting activities. Mothers remained focused on the deceased child, and feelings surrounding their grief experience. Consistent with findings from studies where bereaved parents were interviewed (Rubin, 1996), our study revealed that it was important for parents to “continue the bond” and “keep their deceased child present.” Linked to this issue was parents’ desire to help other parents and families who had similar experiences through a number of activities (e.g., fundraising, support groups, and visiting newly bereaved parents). When helping other parents and families, bereaved parents felt they were continuing the bond with their own deceased child. A study of parents’ involvement and experiences in a grief support organization found it was important for parents to make their lives meaningful and keep their deceased child present, and concluded that parents could achieve this goal by helping other similarly bereaved parents (Klass, 1996). It is also possible that involvement in such activities provides both support, as well as some distraction for parents from their own grieving. Parents’ involvement in this area may pose a dilemma about whether they are emotionally ready to cope with the demands of the particular task or role they have chosen to undertake. This issue could be considered a future area for research.

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It is noteworthy that a number of parents stated that religious faith and “after death beliefs” helped them personally cope with their bereavement. This highlights the need for health professionals to develop an awareness and understanding of an individual’s personal belief system in order to provide more sensitive support. Parents expressed concern about their other children’s grieving process with their grieving. Some parents were aware their other children adjusted their behavior as a response to parents’ sadness and pain. However, parents expressed that as a result of their own personal grieving, they were not as available to support their other children. This finding is consistent with literature that proposes parental grief leading up to and after the death often leads to the needs of the surviving siblings being overlooked (Sloper, 1996; Heiney et al., 1990). Parental emotional status has been found to have an impact on behavioral problems demonstrated by overlooked siblings (Sloper, 1996; Heiney et al., 1990). Hence, provision of parental grief support can potentially contribute to the well-being of other children. There is a clear need to increase parental awareness of siblings’ grieving and to assist them in developing support strategies. Parents stated the hospital unit had a role in providing bereavement support to their other children. Hospitals surveyed in our previous study (deCinque et al., 2004) acknowledged this responsibility through provision of sibling bereavement support programs. Parents in this study identified the OTCU’s existing sibling bereavement program did not adequately meet their needs. There is a need, therefore, for future research to explore this area and to develop more comprehensive bereavement supports for this population. Consistent with the literature (Heiney et al., 1996; Johnson et al., 1993; Stewart, 1995), parents in this study confirmed the relationship with the hospital and the treatment unit staff as being important and a significant source of support. One parent described the hospital staff as family, which reflected the value of this bond. While all parents in this study would have been offered hospital-based bereavement support and contact following the death of their child, this was not acknowledged. In contrast, many parents spoke of the sense of “abandonment” by the treatment unit, and felt they did not receive enough contact from staff members. It would seem that existing bereavement supports provided in the study setting, though comparable with other hospital units (Buchanan et al., 1996; Burke & Gerraughty, 1994; Evans et al., 2002; Heiney et al., 1993; Johnson et al., 1993; McClelland, 1993; Ruden, 1996; Stewart, 1995), did not adequately meet the needs of some bereaved par-

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ents. The parental need for contact with health professionals should be considered in future program development. Parents in this study rarely sought hospital support and relied on the hospital unit to initiate contact and offer bereavement support services. This is an important insight that requires consideration in the future development of hospital-based bereavement support programs. Parents also felt it was important for the hospital unit to link them with other bereaved parents. They expressed the desire to have contact with other parents who have shared their experience, specifically the loss of a child to cancer. This possibly reflects that community agencies may not always be meaningful contacts. The current OTCU bereavement support program included a written package that provided information on death and grief for children and parents, a list of suggested readings, and also a list of community resources and agencies providing bereavement support. However, parents identified a need for information on death, grieving, and bereavement support. This would indicate that existing processes did not meet the needs of parents as perceived by them. Consideration of the type of information, mode of delivery, and timing is essential in further program development. There was limited discussion by parents regarding their use of OTCU bereavement support services. Parents also made little reference to use of community bereavement services. The aim of this study was to consider the needs of bereaved parents following the death of a child from cancer rather than an evaluation of existing services. However, it must be acknowledged that parents did not refer to supports that had been available to them and this finding was of concern. The reason for parent’s apparent lack of use of these services was not clear. Therefore, the hospital unit should be more proactive in linking families with support services offered both by the treatment unit, and the community. In addition, ongoing evaluation should be incorporated. A limitation of the study was the lack of representation of rural families. It is anticipated there would have been some similarities regarding their experiences, as well as differences such as the availability of hospital-based bereavement support. IMPLICATIONS FOR CLINICAL PRACTICE Findings from study Phases 1 and 2 have provided important insight for future program development. Phase 1 highlighted a professional acknowledgment that pediatric oncology units have an important role to

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play in palliation and bereavement support. However, service delivery gaps were identified as common, and these were seen to be related to limited resource availability. The findings from Phase 2 reflected four main areas of parental need and highlighted the importance of supportive contact with oncology unit staff during the palliative phase and following a child’s death. In light of these study findings, the essential components of a family bereavement program should include the early provision of information on how to practically and emotionally cope with the palliation, death, and the grief process; supportive contact from hospital staff during the palliation phase and following the child’s death; the opportunity to connect with other bereaved families who have already experienced the death of a child to provide information and support; and formal support services for siblings. Given that hospital resources are limited, there is a need to establish a greater understanding of the relationship between the family, community, and the hospital treatment unit to enhance collaboration in providing this support. As well, the optimal timeframe for maintenance of hospital support requires further investigation. Therefore, a number of areas for future research and clinical evaluation were identified. These included exploration of parents’ wish to become involved in activities to help other families, bereavement support for siblings, the optimal therapeutic timeframe for family contact with the hospital unit, and parental behaviors that may be associated with use of both hospital- and community-based bereavement supports. The next phase of this program of research will develop, implement, and evaluate a comprehensive hospital-based bereavement support program incorporating study findings. REFERENCES Brown, P.G. (1989). Families who have a child diagnosed with cancer: What the medical caregiver can do to help them and them and themselves. Issues in Comprehensive Pediatric Nursing, 12:247-260. Buchanan, H.L.K., Geubtner, M.D. & Snyder, C.K. (1996). Trauma bereavement program: Review of development and implementation. Critical Nursing Quarterly, 19(1):35-45. Burke, C., & Gerraughty, S.M. (1994). An oncology unit’s initiation of a bereavement support program. Oncology Nursing Forum, 21(10):1675-1680. deCinque, N., Monterosso, L., Dadd, G., Sidhu R. & Lucas R. (2004). Bereavement support for families following the death of a child from cancer: Practice characteris-

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