Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Pediatrics | Research article

When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

Authors: Eline M. Kochen, Floor Jenken, Paul A. Boelen, Laura M. A. Deben, Jurrianne C. Fahner, Agnes van den Hoogen, Saskia C. C. M. Teunissen, Karin Geleijns, Marijke C. Kars

Published in: BMC Palliative Care | Issue 1/2020

Login to get access

Abstract

Background

The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base.

Method

A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds.

Results

Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child’s life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base.

Conclusions

In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality.

Trial registration

This systematic review was registered in Prospero (registration number: CRD42019119241).
Appendix
Available only for authorised users
Literature
1.
Cox SA. Pediatric bereavement: supporting the family and each other. J Trauma Nurs. 2004;11:117–21.PubMedCrossRef
2.
Decinque N, Monterosso L, Dadd G, et al. Bereavement support for families following the death of a child from cancer. J Psychosoc Oncol. 2006;24:65–83.PubMedCrossRef
3.
4.
Kars MC, Grypdonck MHF, De Korte-Verhoef MC, et al. Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss. Support Care Cancer. 2011;19:27–35.PubMedCrossRef
5.
Boelen PA, Smid GE. Disturbed grief: prolonged grief disorder and persistent complex bereavement disorder. BMJ. 2017;357:1–10.
6.
7.
Wiener L, Rosenberg AR, Lichtenthal WG. Personalized and yet standardized : an informed approach to the integration of bereavement care in pediatric oncology settings. Palliat Support Care. 2018;16:706–11.PubMedPubMedCentralCrossRef
8.
Jensen J, Weng C, Spraker-Perlman HL. A provider-based survey to assess bereavement care knowledge, attitudes, and practices in pediatric oncologists. J Palliat Med. 2017;20:266–72.PubMedPubMedCentralCrossRef
9.
Borasino S, Morrison W, Silberman J, et al. Physicians’ contact with families after the death of pediatric patients: a survey of pediatric critical care practitioners’ beliefs and self-reported practices. Pediatrics. 2008;122:e1174–8.PubMedCrossRef
10.
Donovan LA, Wakefield CE, Russell V, et al. Hospital-based bereavement services following the death of a child: a mixed study review. Palliat Med. 2015;29:193–210.PubMedCrossRef
11.
Currin-Mcculloch J, Pelletier W, Jones B, et al. Psychosocial standards of care for children with cancer and their families: a national survey of pediatric oncology social workers. Soc Work Health Care. 2018;57:221–49.PubMedPubMedCentralCrossRef
12.
Lisle-Porter DM, Podruchny AM. The dying neonate: Family-centered end of life care. Neonatal Netw. 2009;28:75–83.PubMedCrossRef
13.
Granek L, Barrera M, Scheinemann K, et al. When a child dies: pediatric oncologists’ follow-up practices with families after the death of their child. Psychooncology. 2015;24:1626–31.PubMedCrossRef
14.
Lichtenthal WG, Sweeney CR, Roberts KE, et al. Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S834–69.PubMedPubMedCentralCrossRef
15.
Endo K, Yonemoto N, Yamada M. Interventions for bereaved parents following a child’s death: a systematic review. Palliat Med. 2015;29:590–604.PubMedCrossRef
16.
Supiano KP. The role of theory in understanding grief. Death Stud. 2018;0:1–4.
17.
Rubin A, Babbie ER. Research methods for social work. 8th ed. Belmont: Brooks/Cole Cengage Learning; 2014.
18.
Boelen PA, Van Den Hout MA, Van Den Bout J, et al. A cognitive-behavioral conceptualization of complicated grief. Clin Psychol Sci Pract. 2006;13:109–28.CrossRef
19.
Bowlby J. Attachment and los, Volume 1: Attachment. New York: Basic Books; 1969.
20.
21.
Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud. 1999;23:197–224.PubMedCrossRef
22.
Stroebe M, Schut H, Stroebe W. Attachment in coping with bereavement: a theoretical integration. Rev Gen Psychol. 2005;9:48–66.CrossRef
23.
Bowlby J. Attachment and loss: volume 3, loss: sadness and depression. New York: Basic Books; 1980.
24.
Folkman S, Lazarus RS. An analysis of coping in a middle-aged community sample. J Heal Soc Behavriour. 1980;21:219–39.CrossRef
25.
Hebert RS, Prigerson HG, Schulz R, et al. Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research. J Palliat Med. 2006;9:1164–71.PubMedCrossRef
26.
Horowitz MJ, Bonanno GA, Holen ARE. Pathological grief: diagnosis and explanation. Psychosom Med. 1993;55:260–73.PubMedCrossRef
27.
Maccallum F, Bryant RA. A cognitive attachment model of prolonged grief: integrating attachments, memory, and identity. Clin Psychol Rev. 2013;33:713–27.PubMedCrossRef
28.
Neimeyer RA. Searching for the meaning of meaning: grief therapy and the process of reconstruction. Death Stud. 2000;24:541–58.PubMedCrossRef
29.
Neimeyer RA. Reconstructing meaning in bereavement: summary of a research program. Estud Psicol. 2011;28:421–6.
30.
Rando TA. Clinical Dimensions of Anticipatory Mourning. Champaign Ill: Research press; 2000.
31.
Zwakman M, Verberne LM, Kars MC, et al. Introducing PALETTE: an iterative method for conducting a literature search for a review in palliative care. BMC Palliat Care. 2018;17:1–9.CrossRef
32.
33.
34.
Schulz R, Czaja SJ, McKay JR, et al. Intervention taxonomy (ITAX): describing essential features of interventions. Am J Health Behav. 2010;34:811–21.PubMedPubMedCentralCrossRef
35.
36.
37.
Allison T, Peter S, Jonathan C. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Heal Care. 2007;19:349.CrossRef
38.
39.
Maes J, Modderman H. Handboek rouw, rouwbegeleiding, rouwtherapie: Tussen presentie en interventie 1st edit. S.I.: Witsand; 2014.
40.
Aho AL, Tarkka M-T, Åstedt-Kurki P, et al. Evaluating a bereavement follow-up intervention for grieving fathers and their experiences of support after the death of a child—a pilot study. Death Stud. 2011;35:879–904.PubMedCrossRef
41.
Meert KL, Eggly S, Berg RA, et al. Feasibility and perceived benefits of a framework for physician-parent follow-up meetings after a child’s death in the PICU. Crit Care Med. 2014;42:148–57.PubMedCrossRef
42.
Nikkola I, Kaunonen M, Aho AL. Mother’s experience of the support from a bereavement follow-up intervention after the death of a child. J Clin Nurs. 2013;22:1151–62.PubMedCrossRef
43.
Raitio K, Kaunonen M, Aho AL. Evaluating a bereavement follow-up intervention for grieving mothers after the death of a child. Scand J Caring Sci. 2015;29:510–20.PubMedCrossRef
44.
Aho AL, Tarkka M-T, Åstedt-Kurki P, et al. Health care personnel’s experiences of a bereavement follow-up intervention for grieving parents. Scand J Caring Sci. 2011;25:373–82.CrossRef
45.
Berrett-Abebe J, Levin-Russman E, Gioiella ME, et al. Parental experiences with a hospital-based bereavement program following the loss of a child to cancer. Palliat Support Care. 2017;15:348–58.PubMedCrossRef
46.
Brink HL, Thomsen AK, Laerkner E. Parents’ experience of a follow-up meeting after a child’s death in the paediatric intensive care unit. Intensive Crit Care Nurs. 2017;38:31–9.PubMedCrossRef
47.
Darbyshire P, Cleghorn A, Downes M, et al. Supporting bereaved parents: a phenomenological study of a telephone intervention programme in a paediatric oncology unit. J Clin Nurs. 2013;22:540–9.PubMedCrossRef
48.
Eggly S, Meert KL, Berger J, et al. A framework for conducting follow-up meetings with parents after a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med. 2011;12:147–52.PubMedPubMedCentralCrossRef
49.
Meert KL, Eggly S, Berger J, et al. Physiciansʼ experiences and perspectives regarding follow-up meetings with parents after a childʼs death in the pediatric intensive care unit. Pediatr Crit Care Med. 2011;12:e64–8.PubMedPubMedCentralCrossRef
50.
Michelson KN, Blehart K, Hochberg T, et al. Bereavement photography for children: program development and health care professionals’ response. Death Stud. 2013;37:513–28.PubMedPubMedCentralCrossRef
51.
Oliver RC, Sturtevant JP, Scheetz JP, et al. Beneficial effects of a hospital bereavement intervention program after traumatic childhood death. J Trauma. 2001;50:440–8.PubMedCrossRef
52.
Aho AL, Åstedt-Kurki P, Tarkka MT, et al. Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research. J Clin Nurs. 2010;20:408–19.PubMedCrossRef
53.
54.
Levick J, Fannon J, Bodemann J, et al. NICU bereavement care and follow-up support for families and staff. Adv Neonatal Care. 2017;17:451–60.PubMedCrossRef
55.
Morris SE, Dole OR, Joselow M, et al. The development of a hospital-wide bereavement program: ensuring bereavement care for all families of pediatric patients. J Pediatr Heal Care. 2016;31:88–95.CrossRef
56.
Reilly-Smorawski B, Armstrong AV, Catlin EA. Bereavement support for couples following death of a baby: program development and 14-year exit analysis. Death Stud. 2002;26:21–37.PubMedCrossRef
57.
Snaman JM, Kaye EC, Levine DR, et al. Empowering bereaved parents through the development of a comprehensive bereavement program. J Pain Symptom Manag. 2017;53:767–75.CrossRef
58.
Stastny PF, Keens TG, Alkon A. Supporting SIDS families: the public health nurse SIDS home visit. Public Health Nurs. 2016;33:242–8.PubMedCrossRef
59.
Edi-Osagie NE, Evans V. Bereavement support in neonatal intensive care. Infant. 2005;1:203–6.
60.
Gibson J, Finney S, Boilanger M. Developing a bereavement program in the newborn intensive care unit. J Perinat Neonatal Nurs. 2011;25:331–41.PubMedCrossRef
61.
Milstein J. A paradigm of integrative care: healing with curing throughout life, ‘being with’ and ‘doing to’. J Perinatol. 2005;25:563–8.PubMedCrossRef
62.
Bloomer MJ, Endacott R, Copnell B, et al. ‘Something normal in a very, very abnormal environment’ - nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia. Intensive Crit Care Nurs. 2016;33:5–11.PubMedCrossRef
63.
Kreicbergs UC, Lannen P, Onelov E, et al. Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol. 2007;25:3307–12.PubMedCrossRef
64.
Lockwood B, Humphrey L. Supporting children and families at a Child’s end of life: pediatric palliative care pearls of anticipatory guidance for families. Child Adolesc Psychiatr Clin N Am. 2018;27:527–37.PubMedCrossRef
65.
Valdimarsdóttir U, Kreicbergs U, Hauksdóttir A, et al. Parents’ intellectual and emotional awareness of their child’s impending death to cancer: a population-based long-term follow-up study. Lancet Oncol. 2007;8:706–14.PubMedCrossRef
66.
Gijzen S, L’Hoir MP, Boere-Boonekamp MM, et al. How do parents experience support after the death of their child? BMC Pediatr. 2016;16:1–10.CrossRef
67.
Laurent S, Samuel J, Dowling T. Fifteen-minute consultation: supporting bereaved parents at the time of a child’s death. Arch Dis Child. 2016;101:292–4.CrossRef
68.
Alves S, Teixeira L, Azevedo MJ, et al. Effectiveness of a psychoeducational programme for informal caregivers of older adults. Scand J Caring Sci. 2016;30:65–73.PubMedCrossRef
69.
Thompson AL, Young-Saleme TK. Anticipatory guidance and psychoeducation as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S684–93.PubMedCrossRef
70.
Durepos P, Kaasalainen S, Carroll S, et al. Perceptions of a psychoeducation program for caregivers of persons with dementia at end of life : a qualitative study at end of life : a qualitative study. Aging Ment Health. 2019;0:1–9.CrossRef
71.
Shelkowitz E, Vessella SL, O’Reilly P, et al. Counseling for personal care options at neonatal end of life: a quantitative and qualitative parent survey psychosocial. BMC Palliat Care. 2015;14:1–11.CrossRef
72.
Darlington ASE, Korones DN, Norton SA. Parental coping in the context of having a child who is facing death: a theoretical framework. Palliat Support Care. 2018;16:432–41.PubMedCrossRef
Metadata
Title
When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
Authors
Eline M. Kochen
Floor Jenken
Paul A. Boelen
Laura M. A. Deben
Jurrianne C. Fahner
Agnes van den Hoogen
Saskia C. C. M. Teunissen
Karin Geleijns
Marijke C. Kars
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Pediatrics
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-0529-z

Other articles of this Issue 1/2020

BMC Palliative Care 1/2020 Go to the issue

Research article

A pilot evaluation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program

Research article

Palliative care for nursing home patients with dementia: service evaluation and risk factors of mortality

Research article

Validation and cultural adaptation of the Integrated Palliative care Outcome Scale (IPOS) for the Portuguese population

Research article

Choosing and Doing wisely: triage level I resuscitation a possible new field for starting palliative care and avoiding low-value care – a nationwide matched-pair retrospective cohort study in Taiwan

Technical advance

Introducing the trajectory Touchpoint technique: a systematic methodology for capturing the service experiences of palliative care patients and their families

Research article

Determining the prevalence of palliative needs and exploring screening accuracy of depression and anxiety items of the integrated palliative care outcome scale – a multi-centre study