Hostname: page-component-cd9895bd7-gvvz8 Total loading time: 0 Render date: 2024-12-22T22:05:37.607Z Has data issue: false hasContentIssue false
  • English
  • Français

Parental experiences with a hospital-based bereavement program following the loss of a child to cancer

Published online by Cambridge University Press:  07 November 2016

Julie Berrett-Abebe ,
Elyse Levin-Russman ,
Marie Elena Gioiella  and
Jeffrey M. Adams
Julie Berrett-Abebe*
Affiliation:
Simmons College School of Social Work, Boston, Massachusetts Massachusetts General Hospital, Boston, Massachusetts
Elyse Levin-Russman
Affiliation:
Massachusetts General Hospital, Boston, Massachusetts
Marie Elena Gioiella
Affiliation:
Social Service Department, Massachusetts General Hospital, Boston, Massachusetts
Jeffrey M. Adams
Affiliation:
Workforce Outcomes Research and Leadership Development (WORLD-Institute) founded by Arizona Sate University College of Nursing and Health Innovation, Phoenix, AZ Brigham and Women's Hospital, Dana-Farber Cancer Institute, Boston, Massachusetts
*
Address correspondence and reprint requests to: Julie Berrett-Abebe, Simmons College School of Social Work, 300 The Fenway, Boston, Massachusetts 02115. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings. The aim of the present qualitative phenomenological study was to understand how parents experienced participating in this bereavement program.

Method:

A total of eight parents from six families participated in a focus-group evaluation of the two-year hospital-based bereavement program. Two social work clinicians/researchers independently analyzed the transcript of the focus group to define themes.

Results:

Four themes were identified: (1) lived experience of grief, (2) importance of relationships with the hospital-based team, (3) bereavement support from hospital-based providers, and (4) extending bereavement care.

Significance of Results:

Participants indicated the value of ongoing communication and connection with members of the healthcare team, who were often central to a family's life for years during their child's cancer treatment. Parents also provided suggestions for extending bereavement support through continued contact with providers and informal annual gatherings, as well as through a peer (parent-to-parent) support program.

Keywords

BereavementPediatric oncologyHospital-based bereavement programQualitative researchPatient- and family-centered care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 3 , June 2017 , pp. 348 - 358
Copyright
Copyright © Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Agnew, A., Manktelow, R., Haynes, T., et al. (2011). Bereavement assessment practice in hospice settings: Challenges for palliative care social workers. The British Journal of Social Work, 41(1), 111–130.CrossRefGoogle Scholar
Billings, J.A. & Kolton, E. (1999). Family satisfaction and bereavement care following death in the hospital. Journal of Palliative Medicine, 2(1), 33–49.CrossRefGoogle ScholarPubMed
Borasino, S., Morrison, W., Silberman, J., et al. (2008). Physicians' contact with families after the death of pediatric patients: A survey of pediatric critical care practitioners' beliefs and self-reported practices. Pediatrics, 122(6), 1174–1178. Epub ahead of print Nov 17.CrossRefGoogle ScholarPubMed
Briller, S.H., Meert, K.L., Schim, S.M., et al. (2008). Implementing a triangulation protocol in bereavement research: A methodological discussion. Omega, 57(3), 245–260.CrossRefGoogle ScholarPubMed
CureSearch (2015). Childhood cancer statistics. Available from http://curesearch.org/Childhood-Cancer-Statistics.Google Scholar
D'Agostino, N.M., Berlin-Romalis, D., Jovcevska, V., et al. (2008). Bereaved parents' perspectives on their needs. Palliative & Supportive Care, 6(1), 33–41.CrossRefGoogle ScholarPubMed
Darbyshire, P., Cleghorn, A., Downes, M., et al. (2013). Supporting bereaved parents: A phenomenological study of a telephone intervention programme in a paediatric oncology unit. Journal of Clinical Nursing, 22(3–4), 540–549. Epub ahead of print Oct 22, 2012.CrossRefGoogle Scholar
deCinque, N., Monterosso, L., Dadd, G., et al. (2004). Bereavement support for families following the death of a child from cancer: Practice characteristics of Australian and New Zealand paediatric oncology units. Journal of Paediatrics and Child Health, 40(3), 131–135.CrossRefGoogle ScholarPubMed
deCinque, N., Monterosso, L., Dadd, G., et al. (2006). Bereavement support for families following the death of a child from cancer: Experience of bereaved parents. Journal of Psychosocial Oncology, 24(2), 65–83.CrossRefGoogle ScholarPubMed
Dowling, M. (2007). From Husserl to van Maren: A review of different phenomenological approaches. International Journal of Nursing Studies, 44(1), 131–142. Epub ahead of print Jan 18, 2006.CrossRefGoogle Scholar
Folkman, S. & Moskowitz, J.T. (2004). Coping: Pitfalls and promise. Annual Review of Psychology, 55, 745–774.CrossRefGoogle ScholarPubMed
Garstang, J., Griffiths, F. & Sidebotham, P. (2014). What do bereaved parents want from professionals after the sudden death of their child: A systematic review of the literature. BMC Pediatrics, 14, 269. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4287432/.CrossRefGoogle Scholar
Gear, R. (2014). Bereaved parents' perspectives on informal social support: “What worked for you?” Journal of Loss and Trauma, 19(2), 173–188.CrossRefGoogle Scholar
Granek, L., Barrera, M., Scheinemann, K., et al. (2015). When a child dies: Pediatric oncologists' follow-up practices with families after the death of their child. Psycho-Oncology. 24(12), 1626–1631. Epub ahead of print Feb 23.CrossRefGoogle Scholar
Grinyer, A. (2012). A bereavement group for parents whose son or daughter died from cancer: How shared experience can lessen isolation. Mortality, 17(4), 338–354.CrossRefGoogle Scholar
Holt-Lunstad, J., Smith, T.B. & Layton, J.B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), e1000316. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910600/.CrossRefGoogle Scholar
Institute of Medicine (IOM) (2001). Crossing the quality chasm: A new health system for the 21st century. Available from https://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf.Google Scholar
Institute for Patient and Family Centered Care (IPFCC) (2015). What is patient- and family-centered health care? Available from http://www.ipfcc.org/faq.html.Google Scholar
Johnson, L.C., Rincon, B., Gober, C., et al. (1993). The development of a comprehensive bereavement program to assist families experiencing pediatric loss. Journal of Pediatric Nursing, S(3), 142–146.Google ScholarPubMed
Johnston, D., Nagel, K., Friedman, D., et al. (2008). Availability and use of palliative care and end of life services for pediatric oncology patients. Journal of Clinical Oncology 26(28), 4646–4650. Available from http://jco.ascopubs.org/content/26/28/4646.full.pdf+html.CrossRefGoogle ScholarPubMed
Kazak, A.E. & Noll, R.B. (2004). Child death from pediatric illness: Conceptualizing intervention from a family/systems and public health perspective. Professional Psychology: Research and Practice, 35(3), 219–226.CrossRefGoogle 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(8), 1431–1441.CrossRefGoogle ScholarPubMed
Lazarus, R.S. & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer Science.Google Scholar
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(9355), 363–367.CrossRefGoogle Scholar
Li, J., Laursen, T.M., Precht, D.H., et al. (2005). Hospitalization for mental illness among parents after the death of a child. The New England Journal of Medicine, 352(12), 1190–1196. Available from http://www.nejm.org/doi/pdf/10.1056/NEJMoa033160.CrossRefGoogle ScholarPubMed
Lichtenthal, W.G., Corner, G.W., Sweeney, C.R., et al. (2015 a). Mental health services for parents who lost a child to cancer: If we build them, will they come? Journal of Clinical Oncology, 33(20), 2246–2253. Epub ahead of print Jun 1. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4486343/.CrossRefGoogle ScholarPubMed
Lichtenthal, W.G., Sweeney, C., Roberts, K.E., et al. (2015 b). Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatric Blood and Cancer, 62(Suppl. 5), S834–S869. Available from http://onlinelibrary.wiley.com/doi/10.1002/pbc.25700/full.CrossRefGoogle ScholarPubMed
Ljungman, L., Hovén, E., Ljungman, G., et al. (2015). Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents. Psycho-Oncology, 24(12), 1792–1798. Epub ahead of print Jun 4. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5033007/.CrossRefGoogle ScholarPubMed
Martinson, I.M., McClowry, S.G., Davies, B., et al. (1994). Changes over time: A study of family bereavement following childhood cancer. Journal of Palliative Care, 10(1), 19–25.CrossRefGoogle Scholar
Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage Publications.CrossRefGoogle Scholar
National Cancer Institute (NCI) (2014). Cancer in children and adolescents. Available from http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet.Google Scholar
Nikkola, I., Kaunonen, M. & Aho, A.L. (2013). Mother's experience of the support from a bereavement follow-up intervention after the death of a child. Journal of Clinical Nursing, 22(7–8), 1151–1162. Available from http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2702.2012.04247.x/full.CrossRefGoogle ScholarPubMed
Rando, T.A. (1985). Bereaved parents: Particular difficulties, unique factors, and treatment issues. Social Work, 30(1), 19–23.CrossRefGoogle ScholarPubMed
Rogers, C.H., Floyd, F.J., Seltzer, M.M., et al. (2008). Long-term effects of the death of a child on parents' adjustment in midlife. Journal of Family Psychology, 22(2), 203–211. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841012/.CrossRefGoogle ScholarPubMed
Russo, C. & Wong, A. (2005). The bereaved parent. Journal of Clinical Oncology, 23(31), 8109–8111. Available from http://jco.ascopubs.org/content/23/31/8109.full.pdf+html.CrossRefGoogle ScholarPubMed
Song, J., Floyd, F.J., Seltzer, M.M., et al. (2010). Long-term effects of child death on parents' health-related quality of life: A dyadic analysis. Family Relations, 59(3), 269–282. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910450/.CrossRefGoogle ScholarPubMed
Stein, J., Peles-Borz, A., Buchval, I., et al. (2006). The bereavement visit in pediatric oncology. Journal of Clinical Oncology, 24(22), 3705–3707. Available from http://jco.ascopubs.org/content/24/22/3705.full.pdf+html.CrossRefGoogle ScholarPubMed
Thompson, A.L, Miller, K.S., Barrera, M., et al. (2011). A qualitative study of advice from bereaved parents and siblings. Journal of Social Work in End-of-Life & Palliative Care, 7(2–3), 153–172. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3230284/.CrossRefGoogle ScholarPubMed
Thrane, S. & Jones, B. (2012). Communication with families after the death of a child: A pilot study. Journal of Hospice and Palliative Nursing, 14(1), 6–10.CrossRefGoogle Scholar
Umphrey, L.R. & Cacciatore, J. (2011). Coping with the ultimate deprivation: Narrative themes in a parental bereavement support group. Omega, 63(2), 141–160.CrossRefGoogle Scholar
Van der Zalm, J.E. & Bergum, V. (2000). Hermeneutic-phenomenology: Providing living knowledge for nursing practice. Journal of Advanced Nursing, 31(1), 211–218.CrossRefGoogle ScholarPubMed
Villacieros, M., Serrano, I., Bermejo, J.C., et al. (2014). Social support and psychological well-being as possible predictors of complicated grief in a cross-section of people in mourning [in Spanish]. Anales de Psicología, 30(3), 944–951.CrossRefGoogle Scholar
Welch, J.G., Mannix, M.M., Boergers, J., et al. (2012). Parental interest in a bereavement support visit when a child dies from cancer. Omega, 65(4), 335–346.CrossRefGoogle Scholar
Wolfe, J., Holcombe, E.G., Klar, N., et al. (2000). Symptoms and suffering at the end of life in children with cancer. The New England Journal of Medicine, 342(5), 326–333. Available from http://www.nejm.org/doi/pdf/10.1056/NEJM200002033420506.CrossRefGoogle ScholarPubMed