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Bereaved parents' perspectives on their needs

Published online by Cambridge University Press:  19 February 2008

Norma Mammone D'Agostino ,
Deborah Berlin-Romalis ,
Vesna Jovcevska  and
Maru Barrera
Norma Mammone D'Agostino
Affiliation:
Princess Margaret Hospital, Psychosocial Oncology and Palliative Care Program, Department of Psychiatry, University of Toronto, Toronto, Canada
Deborah Berlin-Romalis
Affiliation:
The Hospital for Sick Children: Hematology/Oncology Program, Bone Marrow Transplant Program, Pediatric Brain Tumor Program; Social Work Department, University of Toronto, Toronto, Canada
Vesna Jovcevska
Affiliation:
The Hospital for Sick Children, Department of Psychology, Toronto, Canada
Maru Barrera*
Affiliation:
The Hospital for Sick Children: Department of Psychology, Hematology/Oncology Program, Child Health Evaluative Sciences, Research Institute; Department of Public Health Sciences, University of Toronto, Toronto, Canada
*
Address correspondence and reprint requests to: Maru Barerra, Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada. E-mail: maru.barrera@sickkids.ca
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Abstract

Objective:

The loss of a child can be traumatic for parents, given the profound bond established with the deceased child. Parental bereavement and the need for bereavement services are not well understood. This study examined parental perspectives regarding bereavement services from a pediatric oncology treating center.

Methods:

A 2-h focus group of seven parents, audiotaped and transcribed verbatim, was conducted by two facilitators using open-ended questions to generate discussion regarding their views of what services were or would be helpful during early bereavement.

Results:

Parents perceived flexible and continuous bereavement services from the treating hospital as a necessary transition to community services. Talking to other parents with similar experiences and maintaining contact with staff at the treating hospital were considered critical in their healing after the loss.

Significance of results:

Transitional multimodality bereavement services offered by the treating hospital will improve the quality of life of bereaved families.

Keywords

Parental perspectiveBereavement servicesTransition
Type
Original Articles
Information
Palliative & Supportive Care , Volume 6 , Issue 1 , March 2008 , pp. 33 - 41
Copyright
Copyright © Cambridge University Press 2008

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References

REFERENCES

Arnold, J., Buschman Gemma, P., & Cushman, L.F. (2005). Exploring parental grief: Combining quantiative and qualitative measures. Archives of Psychiatric Nursing, 19, 245–255.Google Scholar
Barrera, M., Mammone D'Agostino, N., Schneiderman, G., Tallett, S., Spencer, L., & Jovcevska, V. (2007). Patterns of parental bereavement following the death of a child and related factors. Omega: The Journal of Death and Dying, 55, 145–167.Google Scholar
Barrera, M., D'Agostino, N., Spencer, L., et al. (2006, September). Bereaved parents' continuing relationship with their deceased child at six months post loss. Presentation made at the 16th International Congress of the Terminally Ill, Montreal, Canada.Google Scholar
Barrera, M., & Jovcevska, V. (2006, June). Changes in bereaved parents' relationships and parenting role after loss. Presentation made at the 3rd International Cardiff Conference—Progress in palliation: Intervention or interference, Cardiff, UK.Google Scholar
Beardsmore, S. & Fitzmaurice, N. (2002). Palliative care in paediatric oncology. European Journal of Cancer, 38, 1908–1910.CrossRefGoogle ScholarPubMed
Bradshaw, G., Hinds, P.S., Lensing, S., et al. (2005). Cancer-related deaths in children and adolescents. Journal of Palliative Medicine, 8, 86–95.CrossRefGoogle ScholarPubMed
Clarke, M. & Williams, A.J. (1979). Depression in women after perinatal death. Lancet, 1, 916–917.CrossRefGoogle ScholarPubMed
Cleiren, M. (1993). Bereavement and Adaptation: A Comparative Study of the aftermath of Death. Washington, DC: Hemisphere.Google Scholar
Contro, N., Larson, J., Scofield, S., et al. (2002). Family perspectives on the quality of pediatric palliative care. Archives of Pediatric and Adolescent Medicine, 156, 14–19.Google Scholar
D'Agostino, N., Berlin, D., & Barrera, M. (2004, November). A needs assessment of what bereaved parents want. Poster presented at the Annual Symposium of the Pediatric Oncology Group of Ontario, Toronto, Canada.Google Scholar
Forrest, G.C., Standish, E., & Baum, J.D. (1982). Support after perinatal death: A study of support and counseling after perinatal bereavement. British Medical Journal, 285, 1475–1479.Google Scholar
Freeman, K., O'Dell, C., & Meola, C. (2001). Focus group methodology for patients, parents, and siblings. Journal of Pediatric Oncology Nursing, 18, 276–286.Google Scholar
Goodenough, B., Drew, D., Higgins, S., et al. (2003). Bereavement outcomes for parents who lose a child to cancer: Are place of death and sex of parent associated with differences in psychological functioning? Psychooncology, 13, 779–791.Google Scholar
Hazzard, A., Weston, J., & Gutterres, C. (1992). After a child's death: Factors related to parental bereavement. Journal of Developmental and Behavioral Pediatrics, 13, 24–30.Google Scholar
Heary, C.M. & Hennessy, E. (2002). The use of focus group interviews in pediatric health care research. Journal of Pediatric Psychology, 27, 47–57.CrossRefGoogle ScholarPubMed
James, L. & Johnson, B. (1997). The needs of parents of pediatric oncology during the palliative care phase. Journal of Pediatric Oncology Nursing, 14, 83–95.Google Scholar
Kitzinger, J. (1995). Qualitative research: Introducing focus groups. British Medical Journal, 311, 299–302.Google Scholar
Klass, D. (1993). The inner representation of the dead child and the worldviews of bereaved parents. Omega: Journal of Death and Dying, 26, 255–272.Google Scholar
Klass, D. (1999). The Spiritual Lives of Bereaved Parents. Philadelphia, PA: Brunner/Mazel.Google Scholar
Klich, B. (1994). In My Thoughts: A Handbook for Families Who Have Lost a Child in Death. Toronto, ON: Bereaved Families of Ontario.Google Scholar
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., et al. (2004). Anxiety and depression in parents 4–9 years after the loss of a child owing to a malignancy: A population based follow-up. Psychological Medicine, 34, 1431–1441.Google Scholar
Li, J., Hansen, D., Mortensen, P.B., et al. (2002a). Myocardial infarction in parents who lost a child: A nationwide prospective cohort study in Denmark. Circulation, 106, 1634–1639.Google Scholar
Li, J., Johansen, C., Bronnum-Hansen, H., et al. (2004). The risk of multiple sclerosis in bereaved parents: A nationwide study in Denmark. Neurology, 62, 726–728.CrossRefGoogle ScholarPubMed
Li, J., Johansen, C., Hansen, D., et al. (2002 b). Cancer incidence in parents who lost a child. Cancer, 95, 2237–2242.CrossRefGoogle ScholarPubMed
Li, J., Laursen, T.M., Precht, D.H., et al. (2005). Hospitalization for mental illness among parents after the death of a child. New England Journal of Medicine, 352, 1190–1196.CrossRefGoogle ScholarPubMed
Li, J., Precht, D.H., Mortensen, P.B., et al. (2003). Mortality in parents after death of a child in Denmark: A nationwide follow-up study. Lancet, 361, 363–367.Google Scholar
Macdonald, M.A., Liben, S., Carnevale, F.A., et al. (2005). Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death. Pediatrics, 116, 884–890.CrossRefGoogle ScholarPubMed
Malkinson, R. & Bar-Tur, L. (1999). The aging of grief in Israel: A perspective of bereaved parents. Death Studies, 23, 413–431.Google Scholar
Meert, K.L., Thurston, C.S., & Briller, S.H. (2005). The spiritual needs of parents at the time of their child's death in the pediatric intensive care unit and during bereavement: A qualitative study. Pediatric Critical Care, 6, 420–427.CrossRefGoogle ScholarPubMed
Miles, M.S., & Crandall, E.K.B. (1983). The search for meaning and its potential for affecting growth in bereaved parents. Health Values: Achieving High Level Wellness, 7, 19–23.Google ScholarPubMed
Murphy, S.A., Braun, T., Tillery, L., et al. (1999). PTSD among bereaved parents following the violent deaths of their 12 to 28 year-old children: A longitudinal prospective analysis. Journal of Traumatic Stress, 12, 273–291.CrossRefGoogle ScholarPubMed
Murphy, S.A., Johnson, C., Cain, K.C., et al. (1998). Broad spectrum group treatment for parents bereaved by the violent deaths of their 12 to 28 year-old children. Death Studies, 22, 209–236.Google ScholarPubMed
Murphy, S.A., Johnson, L.C., Chung, I.J., et al. (2003). The prevalence of PTSD following the violent death of a child and predictors of change 5 years later. Journal of Traumatic Stress, 16, 17–25.CrossRefGoogle ScholarPubMed
Neidig, J.R. & Dalgas-Pelish, P. (1991). Parental grieving and perceptions regarding health care professionals' interventions. Issues in Comprehensive Pediatric Nursing, 14, 179–191.CrossRefGoogle ScholarPubMed
Osterweis, M., Soloman, F., & Green, M. (1984). Bereavement: Reactions, consequences, and care. Washington, DC: National Academy Press.Google Scholar
Piper, W.E., Ogrodniczuk, J.S., Azim, H.F., et al. (2001). Prevalence of loss and complicated grief among psychiatric outpatients. Psychiatric Services, 52, 1069–1074.Google Scholar
Prigerson, H.G. & Jacobs, S.C. (2001). Traumatic grief as a distinct disorder: A rationale, consensus criteria, and a preliminary empirical test. In Handbook of Bereavement Research: Consequences, Coping, and Cure, Stroebe, M.S., Hansson, R.O., Stroebe, W., et al. (eds.), pp. 145–167. Washington, DC: American Psychological Association.Google Scholar
Prigerson, H.G., Shear, M.K., Jacobs, S.C., et al. (1999). Consensus criteria for traumatic grief. British Journal of Psychiatry, 174, 67–73.CrossRefGoogle ScholarPubMed
Rando, T.A. (1983). An investigation of grief and adaptation in parents whose children have died of cancer. Journal of Pediatric Psychology, 8, 3–20.CrossRefGoogle Scholar
Rubin, S.S. & Malkinson, R. (2001). Parental response to child loss across the life cycle: Clinical and research perspectives. In Handbook of Bereavement Research: Consequences, Coping, and Cure, Stroebe, M.S., Hansson, R.O., Stroebe, W., et al. (eds.), pp. 145–167. Washington, DC: American Psychological Association.Google Scholar
Russo, C. & Wong, A.F. (2005). The bereaved parent. Journal of Clinical Oncology, 23, 8109–8111.CrossRefGoogle ScholarPubMed
Schaefer, J.A., & Moos, R.H. (2001). Bereavement experiences and personal growth. In Handbook of Bereavement Research: Consequences, Coping, and Cure, Stroebe, M.S. Hansson, R.O., Stroebe, W., & Schut, H. (eds.), pp. 145–167. Washington, DC: American Psychological Association.Google Scholar
Schneiderman, G., Winders, P., Tallet, S., et al. (1994). Do child and/or parent bereavement programs work? Canadian Journal of Psychiatry, 39, 215–218.CrossRefGoogle ScholarPubMed
Schut, H., Stroebe, M.S., Van den Bout, J., et al. (2001). The efficacy of bereavement interventions: determining who benefits. In Handbook of Bereavement Research: Consequences, Coping and Cure, Stroebe, M.S., Hansson, R.O., Stroebe, W., & Schut, H., (eds.), pp. 705–737. Washington, DC: American Psychological Association.Google Scholar
Sirkia, K., Saarinen-Pihkala, , & Hovi, L. (2000). Coping of parents and siblings with the death of a child with cancer: Death after terminal care compared with death during active anticancer therapy. Acta Paediatrica, 89, 717–721.Google Scholar
Smith, M.A. & Gloekler Ries, L.A. (2002). Childhood cancer: Incidence, survival, and morality. In Principles and Practice of Pediatric Oncology, 4th ed., Pizzo, P.A. & Poplack, D.G. (eds.), pp. 1–12. Baltimore, MD: Lippincott Williams & Wilkins.Google Scholar
Strauss, A. & Corbin, J. (1990). Basics of Qualitative Research: Grounded Theory Procedures and Techniques. London: Sage Publications.Google Scholar
Talbot, K. (2002). What Forever Means after the Death of a Child: Transcending the Trauma, Living with the Loss. New York: Brunner-Routledge.Google Scholar
Uren, T.H. & Wastell, C.A. (2002). Attachment and meaning-making in perinatal bereavement. Death Studies, 26, 279–308.Google Scholar
Vance, J.C., Boyle, F.M., Najman, J.M., et al. (1995). Gender differences in parental psychological distress following perinatal death or sudden infant death syndrome. British Journal of Psychiatry, 167, 806–811.Google Scholar
Vance, J.C., Foster, W.J., Najman, J.M., et al. (1991). Early parental responses to suden infant death, stillbirth or neonatal death. Medical Journal of Australia, 155, 292–297.Google Scholar
Widger, K.A. & Wilkins, K. (2004). What are the key components of quality perinatal and pediatric end-of-life care? A literature review. Journal of Palliative Care, 20, 105–112.Google Scholar
Wilson, D. (1988). The ultimate loss: The dying child. Loss, Grief, Care, 2, 125–130.Google Scholar
Wolfe, J., Grier, H.E., Klar, N., et al. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342, 326–333.Google Scholar