Hostname: page-component-cd9895bd7-dzt6s Total loading time: 0 Render date: 2024-12-26T16:10:09.286Z Has data issue: false hasContentIssue false
  • English
  • Français

Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings

Published online by Cambridge University Press:  01 February 2018

Lori Wiener ,
Abby R. Rosenberg ,
Wendy G. Lichtenthal ,
Julia Tager  and
Meaghann S. Weaver
Lori Wiener*
Affiliation:
National Institutes of Health, National Cancer Institute, Center for Cancer Research, Bethesda, MD
Abby R. Rosenberg
Affiliation:
Seattle Children's Research Institute, Center for Clinical and Translational Research and Treuman Katz Centre for Pediatric Bioethics, Seattle, WA
Wendy G. Lichtenthal
Affiliation:
Memorial Sloan Kettering Cancer Center, Department of Psychiatry & Behavioral Sciences, New York, New York
Julia Tager
Affiliation:
National Institutes of Health, National Cancer Institute, Center for Cancer Research, Bethesda, MD
Meaghann S. Weaver
Affiliation:
Children's Hospital and Medical Center, Hand in Hand/Pediatric Palliative Care, Pediatric Oncology, Omaha, NE
*
Author for correspondence: Lori Wiener, Ph.D., Center for Cancer Research, National Cancer Institute, Building 10- Hatfield CRC Room 1-6466, Bethesda, MD 20892. E-mail: wienerl@mail.nih.gov
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.

Method

Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.

Result

The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.

Significance of results

Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

Keywords

Pediatric oncologypediatric palliative carepediatric cancerbereavement
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 6 , December 2018 , pp. 706 - 711
Copyright
Copyright © Cambridge University Press 2018 

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

Cancer in Children and Adolescents (2014) National Cancer Institute. Available from https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheetGoogle Scholar
Chau, NG, Zimmerman, C, Ma, C, et al. (2009) Bereavement practices of physicians in oncology and palliative care. Archives of Internal Medicine 169(10), 963–971.Google Scholar
Contro, N, Larson, J, Scofield, S, et al. (2002) Family perspectives on the quality of pediatric palliative care. Archives of Pediatrics & Adolescent Medicine 156, 14–19.Google Scholar
Croney, T and Clark, K (2015). Palliative care certification: New and revised standards overview and review process. Available from https://www.jointcommission.org/assets/1/6/PalliativeCare_2015_teleconference_slides.pdfGoogle Scholar
D'Agostino, NM, Berlin-Romalis, D, Jovcevska, V, et al. (2008) Bereaved parents’ perspectives on their needs. Palliative and Support Care 6, 33–41.Google Scholar
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, 65–83.Google Scholar
deJong-Berg, MA and Kane, L (2006) Bereavement care for families part 2: Evaluation of a paediatric follow-up programme. International Journal of Palliative Nursing 12, 484–494.Google Scholar
Dillman, D, Smyth, J, and Christian, L (2009) Internet, mail, and mixed-mode surveys: The tailored design method, 3rd ed. Hoboken, NJ: John Wiley & Sons, Inc.Google 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, 1626–1631.Google Scholar
Granek, L, Mazzotta, P, Tozer, R, et al. (2013) Oncologists’ protocol and coping strategies in dealing with patient loss. Death Studies 37(10), 937–952.Google Scholar
Heller, K and Solomon, M (2005) Continuity of care and caring: What matters most to parents of children with life-threatening conditions. Journal of Pediatric Nursing 20, 335–346.Google Scholar
Jensen, J, Weng, C, and Spraker-Perlman, HL (2017) A Provider-based survey to assess bereavement care knowledge, attitudes, and practices in pediatric oncologists. Journal of Palliative Medicine 20(3), 266–272.Google Scholar
Kearney, J (2017) Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions. Psycho-Oncology 26(S1), 5.Google Scholar
Kutner, JS (2009) Bereavement: Addressing challenges faced by advanced cancer patients, their cargivers. Primary Care 36, 825–844.Google Scholar
Lichtenthal, WG (2011) Using mixed methods data to adapt meaning centered psychotherapy for bereaved parents and breast cancer survivors. Psycho-Oncology 20(Suppl. 20), 15.Google Scholar
Lichtenthal, WG, Corner, GW, Sweeney, CR, et al. (2015) 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.Google Scholar
Macdonald, ME, Liben, S, Carnevale, FA, et al. (2005) Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child's death. Pediatrics 116, 884–890.Google Scholar
Roberts, K, Holland, J, Prigerson, HG, et al. (2017) Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback. Palliative and Supportive Care 15, 57–66.Google Scholar
Rosenberg, A, Baker, K, Syrjala, K, et al. (2012) Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatric Blood and Cancer 58, 503–512.Google Scholar
Snaman, JM, Kaye, EC, Cunningham, MJ, et al. (2017) Going straight to the source: A pilot study of bereaved parent-facilitated communication training for pediatric subspecialty fellows. Pediatric Blood and Cancer 64(1), 156–162.Google Scholar
Snaman, JM, Kaye, EC, Torres, C, et al. (2016) Helping parents live with the hole in their heart: The role of healthcare providers and institutions in the bereaved parents’ grief journeys. Cancer 122(17), 2757–2765.Google Scholar
Sullivan, R, Kowalczyk, JR, Agarwal, B, et al. (2013) New policies to address the global burden of childhood cancers. The Lancet Oncology 14:3, e125–e135.Google Scholar
Wiener, L, Kazak, AE, Noll, RB, et al. (2015) Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatric Blood and Cancer 62(S5), S419–S424.Google Scholar