No wrong decisions in an all-wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma.
DIPG
coping strategies
death
decision-making
lived experiences
regret
Journal
Pediatric blood & cancer
ISSN: 1545-5017
Titre abrégé: Pediatr Blood Cancer
Pays: United States
ID NLM: 101186624
Informations de publication
Date de publication:
09 2022
09 2022
Historique:
revised:
29
04
2022
received:
12
12
2021
accepted:
02
05
2022
pubmed:
3
6
2022
medline:
27
7
2022
entrez:
2
6
2022
Statut:
ppublish
Résumé
Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.
Sections du résumé
BACKGROUND
Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking.
PROCEDURE
The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis.
RESULTS
For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed.
CONCLUSION
The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e29792Informations de copyright
© 2022 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.
Références
Rashed WM, Maher E, Adel M, Saber O, Zaghloul MS. Pediatric diffuse intrinsic pontine glioma: where do we stand? Cancer Metastasis Rev. 2019;38(4):759-770.
Soleman J, Dvir R, Ben-Sira L, et al. MRI-based diagnosis and treatment of pediatric brain tumors: is tissue sample always needed? Childs Nerv Syst. 2021;37(5):1449-1459.
Chiang J, Diaz AK, Makepeace L, et al. Clinical, imaging, and molecular analysis of pediatric pontine tumors lacking characteristic imaging features of DIPG. Acta Neuropathol Commun. 2020;8(1):57.
Lazow MA, Fuller C, DeWire M, et al. Accuracy of central neuro-imaging review of DIPG compared with histopathology in the International DIPG Registry. Neuro Oncol. 2022;24(5):821-833. https://doi.org/10.1093/neuonc/noab245
Williams JR, Young CC, Vitanza NA, et al. Progress in diffuse intrinsic pontine glioma: advocating for stereotactic biopsy in the standard of care. Neurosurg Focus. 2020;48(1):E4.
Lassaletta A, Strother D, Laperriere N, et al. Reirradiation in patients with diffuse intrinsic pontine gliomas: the Canadian experience. Pediatr Blood Cancer. 2018;65(6):e26988.
Gwak H, Hyeon JP. Developing chemotherapy for diffuse pontine intrinsic gliomas (DIPG). Crit Rev Oncol Hematol. 2017;120:111-119.
Souweidane MM, Kramer K, Pandit-Taskar N, et al. Convection-enhanced delivery for diffuse intrinsic pontine glioma: a single-centre, dose-escalation, phase 1 trial. Lancet Oncol. 2018;19(8):1040-1050.
Schuelke MR, Wongthida P, Thompson J, et al. Diverse immunotherapies can effectively treat syngeneic brainstem tumors in the absence of overt toxicity. J Immunother Cancer. 2019;7:188. https://doi.org/10.1186/s40425-019-0673-2
Shortman RI, Beringer A, Penn A, Malson H, Lowis SP, Sharples PM. The experience of mothers caring for a child with a brain tumour. Child Care Health Dev. 2013;39:743-749.
Lou HL, Mu PF, Wong TT, Mao HC. A retrospective study of mothers’ perspectives of the lived experience of anticipatory loss of a child from a terminal brain tumor. Cancer Nurs. 2015;38:298-304.
Robinson JE, Huskey D, Schwartz J, Weaver MS. The many roles of the rock: a qualitative inquiry into the roles and responsibilities of fathers of children with brain tumors. Children. 2019;6(10):113. https://doi.org/10.3390/children6100113
Rocque BG, Cutillo A, Zimmerman K, et al. Distress and psychosocial risk in families with newly diagnosed pediatric brain tumors. J Neurosurg Pediatr. 2018;23:40-47.
Zelcer S, Cataudella D, Cairney AEL, Bannister SL. Palliative care of children with brain tumors: a parental perspective. Arch Pediatr Adolesc Med. 2010;164(3):225-230.
Young K, Bowers A, Bradford N. Families' experiences of child and adolescent brain tumor: a systematic review and synthesis of qualitative research. Psychooncology. 2021;30(10):1643-1662.
VERBI Software. MAXQDA 2020 [computer software]. VERBI Software; 2019. Sept 2020 https://www.maxqda.com/
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589-597.
Björk M, Wiebe T, Hallström I. Striving to survive: families’ lived experiences when a child is diagnosed with cancer. J Pediatr Oncol Nurs. 2005;22:265-275.
Björk M, Wiebe T, Hallström I. An everyday struggle. Swedish families’ lived experiences during a child's cancer treatment. J Pediatr Nurs. 2009;24(5):423-432.
Björk M, Nordström B, Wiebe T, Hallström I. Returning to a changed ordinary life - families’ lived experience after completing a child's cancer treatment. Eur J Cancer Care (Engl). 2011;20:163-169.
Woodgate RL. Life is never the same: childhood cancer narratives. Eur J Cancer Care (Engl). 2006;15(1):8-18.
De Clercq E, Elger BS, Wangmo T. Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology. Eur J Cancer Care (Engl). 2017;26(6):e12651.
Bruce A, Sheilds L, Molzahn A, Beuthin R, Schick-Makaroff K, Shermak S. Stories of liminality: living with life-threatening illness. J Holist Nurs. 2014;32(1):35-43.
Whitney SN, Ethier AM, Frugé E, Berg S, McCullough LB, Hockenberry M. Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncol. 2006;24(1):160-165.
Valdez-Martinez E, Noyes J, Bedolla M. When to stop? Decision-making when children's cancer treatment is no longer curative: a mixed-method systematic review. BMC Pediatr. 2015;14:124. https://doi.org/10.1186/1471-2431-14-124
Coyne I, Amory A, Kiernan G, Gibson F. Children's participation in shared decision-making: children, adolescents, parents and healthcare professionals' perspectives and experiences. Eur J Oncol Nurs. 2014;18(3):273-280.
Badarau DO, Ruhe KM, Kühne T, et al. Decision making in pediatric oncology: views of parents and physicians in two European countries. AJOB Empir Bioeth. 2016;8(1):21-31.
Sim CW, Heuse S, Weigel D, Kendel F. If only I could turn back time - regret in bereaved parents. Pediatr Blood Cancer. 2020;67:e28265.
Lichtenthal WG, Roberts KE, Catarozoli C, et al. Regret and unfinished business in parents bereaved by cancer: a mixed methods study. Palliat Med. 2020;34(3):367-377.
Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. J Am Med Assoc. 2000;284(19):2469-2475.
Mack JW, Joffe S, Hilden JM, et al. Parents’ views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol. 2008;26:4759-4764.
Holmberg C, Brinkhaus B, Witt C. Experts’ opinions on terminology for complementary and integrative medicine - a qualitative study with leading experts. BMC Complement Altern Med. 2012;12:218. https://doi.org/10.1186/1472-6882-12-218
Huber BM, von Schoen-Angerer T, Hasselmann O, Wildhaber J, Wolf U. Swiss paediatrician survey on complementary medicine. Swiss Med Wkly. 2019;149:w20091.
Stub T, Kristoffersen AE, Overvåg G. An integrative review on the information and communication needs of parents of children with cancer regarding the use of complementary and alternative medicine. BMC Complement Med Ther. 2020;20(1):90. https://doi.org/10.1186/s12906-020-02882-y
Bishop FL, Prescott P, Chan YK, Saville J, von Elm E, Lewith GT. Prevalence of complementary medicine use in pediatric cancer: a systematic review. Pediatrics. 2010;125:768-776.
Magi T, Kuehni CE, Torchetti L, Wengenroth L, Lüer S, Frei-Erb M. Use of complementary and alternative medicine in children with cancer: a study at a Swiss University Hospital. PLoS One. 2015;10(12):e0145787.
United Nations. Convention on the Rights of the Child, 1577 U.N.T.S. 3 (1989). Treaty Series. United Nations; 1989.
Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr. 2016;105(9):1094-1099.
Streuli JC, Anderson J, Alef-Defoe S, et al. Combining the best interest standard with shared decision-making in paediatrics-introducing the shared optimum approach based on a qualitative study. Eur J Pediatr. 2021;180(3):759-766.
Jonas D, Scanlon C, Bogetz JF. Parental decision-making for children with medical complexity: an integrated literature review. J Pain Symptom Manage. 2022;63(1):e111-e123.
Renjilian CB, Womer JW, Carroll KW, Kang TI, Feudtner C. Parental explicit heuristics in decision-making for children with life-threatening illnesses. Pediatrics. 2013;131:e566-e572.
Macauley R. To trach or not to trach, that is the question. Paediatr Respir Rev. 2019 Feb;29:9-13. https://doi.org/10.1016/j.prrv.2018.05.004. Epub 2018 May 17.PMID: 30665734.
Madrigal VN, Patterson Kelly K. Supporting family decision-making for a child who is seriously ill: creating synchrony and connection. Pediatrics. 2018;142(3):S170-S177.
Lin JL, Clark CL, Halpern-Felsher B, et al. Parent perspectives in shared decision-making for children with medical complexity. Acad Pediatr. 2020;20:1101-1108.
Ruch C. Wer ist eigentlich Palliative Care? Palliative Ch. 2013;2:45-47. https://documen.site/download/trauer-deuil-lutto_pdf
Weaver MS, Heinze KE, Kelly KP, et al. Palliative care as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S829-S833.
Rost M, De Clercq E, Rakic M, Wangmo T, Elger B. Barriers to palliative care in pediatric oncology in Switzerland: a focus group study. J Pediatr Oncol Nurs. 2020;37(1):35-45.
De Clercq E, Rost M, Rakic M, et al. The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective. BMC Palliat Care. 2019;18(1):55.
Bergstraesser E, Inglin S, Hornung R, Landolt MA. Dyadic coping of parents after the death of a child. Death Stud. 2015;39(3):128-138.
Pohlkamp L, Kreicbergs U, Sveen J. Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss-a nationwide study. Psychooncology. 2019;28(7):1530-1536.
Snaman J, Morris SE, Rosenberg AR, Holder R, Baker J, Wolfe J. Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support. Support Care Cancer. 2020;28(9):4131-4139.
Rensen N, Steur LM, Schepers SA, et al. Gender-specific differences in parental health-related quality of life in childhood cancer. Pediatr Blood Cancer. 2019;66:e27728. https://doi.org/10.1002/pbc.27728
Leemann T, Bergstraesser E, Cignacco E, Zimmermann K. Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the “Paediatric end-of-life care needs” (PELICAN) study. BMC Palliat Care. 2020;19(1):118. https://doi.org/10.1186/s12904-020-00621-1