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Children’s understanding of dying and death: A multinational grounded theory study

Published online by Cambridge University Press:  24 March 2023

Paula McPoland ,
Daniel H. Grossoehme Open the ORCID record for Daniel H. Grossoehme [Opens in a new window] ,
Denice C. Sheehan ,
Pamela Stephenson ,
Julia Downing ,
Theony Deshommes ,
Pascale Y.H. Gassant  and
Sarah Friebert
Paula McPoland
Affiliation:
Department of Anesthesiology and Pain Medicine, University of Washington, Seattle, WA, USA
Daniel H. Grossoehme*
Affiliation:
Rebecca D. Considine Research Institute, Akron Children’s Hospital, Akron, OH, USA Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital, Akron, OH, USA College of Public Health, Kent State University, Kent, OH, USA
Denice C. Sheehan
Affiliation:
College of Nursing, Kent State University, Kent, OH, USA
Pamela Stephenson
Affiliation:
College of Nursing, Kent State University, Kent, OH, USA
Julia Downing
Affiliation:
International Children’s Palliative Care Network, Assagay, South Africa Makerere/Mulago Palliative Care Unit, Kampala, Uganda
Theony Deshommes
Affiliation:
Department of Pediatrics, Alpert Medical School of Brown University, Providence, RI, USA
Pascale Y.H. Gassant
Affiliation:
Department of Pediatric Oncology, Saint-Damien Pediatric Hospital, Tabarre, Haiti
Sarah Friebert
Affiliation:
Rebecca D. Considine Research Institute, Akron Children’s Hospital, Akron, OH, USA Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital, Akron, OH, USA Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH, USA
*
Author for correspondence: Daniel H. Grossoehme, Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital, 215 West Bowery Street, Akron, OH 44308, USA. Email: dgrossoehme@akronchildrens.org
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Abstract

Objectives

The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death.

Methods

This qualitative study obtained interview data from N = 44 5–18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology.

Results

Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country.

Significance of results

This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

Keywords

ChildrenDeathQualitativeGrounded theoryCross-cultural
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 2 , April 2024 , pp. 213 - 220
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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References

American Academy of Pediatircs (n.d.) EQIPP: Talking about serious illness. https://shop.aap.org/eqipp-talking-about-serious-illness/ (accessed 20  May 2022).Google Scholar
Bjork, M, Norstrom, B and Hallstrom, I (2006) Needs of young children with cancer during their initial hospitalization: An observational study. Journal of Pediatric Oncology Nursing 23(4), 210–219. doi:10.1177/1043454206289737CrossRefGoogle ScholarPubMed
Charmaz, K (2014) Constructing Grounded Theory, 2nd edn. Thousand Oaks, CA: Sage.Google Scholar
Coles, R (1991) The Spiritual Life of Children. Boston, MA: Houghton Mifflin Company.Google Scholar
Connor, SR, Downing, J and Marston, J (2017) Estimating the global need for palliative care for children: A cross-sectional analysis. Journal of Pain and Symptom Management 53(2), 171–177. doi:10.1016/j.jpainsymman.2016.08.020CrossRefGoogle ScholarPubMed
Cotton, S, Grossoehme, DH, Bignall, WR, et al. (2014) Should my provider pray with me? Perspectives of urban adolescents with asthma on addressing religious and spiritual issues in hypothetical clinical settings. Journal of Religion and Health 53(2), 604–613. doi:10.1007/s10943-013-9790-2CrossRefGoogle ScholarPubMed
Cotton, S, Grossoehme, DH and McGrady, ME (2012) Religious coping and the use of prayer in children with sickle cell disease. Pediatric Blood & Cance 58(2), 244–249. doi:10.1002/pbc.23038CrossRefGoogle ScholarPubMed
Cotton, S, Pargament, KI, Grossoehme, DH, et al. (2013) Spiritual struggles, health-related quality of life, and mental health outcomes in Urban adolescents with asthma. In Piedmont, R and Village, A (eds), RSSSR, Vol 24. 259–280.Google Scholar
Dalton, L, Rapa, E, Ziebland, S, et al. (2019) Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent. The Lancet 393(10176), 1164–1176. doi:10.1016/S0140-6736(18)33202-1CrossRefGoogle ScholarPubMed
Downing, J, Knapp, C, Muckaden, MA, et al. (2015) Priorities for global research into children’s palliative care: Results of an International Delphi Study. BMC Palliative Care 14, . doi:10.1186/s12904-015-0031-1CrossRefGoogle ScholarPubMed
Friebert, S, Grossoehme, DH, Baker, JN, et al. (2020) Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care. JAMA Network Open 3(5), . doi:10.1001/jamanetworkopen.2020.5424CrossRefGoogle ScholarPubMed
Glaser, BG (1978) Advances in the Methodology of Grounded Theory: Theoretical Sensitivity. San Francisco, CA: University of California.Google Scholar
Grossoehme, DH, Teeters, A, Jelinek, S, et al. (2016) Screening for spiritual struggle in an adolescent transgender clinic: Feasibility and acceptability. Journal of Health Care Chaplaincy 22(2), 54–66. doi:10.1080/08854726.2015.1123004CrossRefGoogle Scholar
Kennedy, B, Chen, R, Valdimarsdóttir, U, et al. (2018) Childhood bereavement and lower stress resilience in late adolescence. Journal of Adolescent Health 63(1), 108–114. doi:10.1016/j.jadohealth.2018.02.002CrossRefGoogle ScholarPubMed
Lincoln, YS and Guba, EG (1985) Naturalistic Inquiry. Neweberry Park, CA: Sage Publications.CrossRefGoogle Scholar
National Consensus Project for Quality Palliative Care (2018) Clinical Practice Guidelines for Quality Palliative Care, 4th edn. Richmond, VA: National Coalition for Hospice and Palliative Care.Google Scholar
Panagiotaki, G, Hopkins, M, Nobes, G, et al. (2018) Children’s and adults’ understanding of death: Cognitive, parental, and experiential influences. Journal of Experimental Child Psychology 166, 96–115. doi:10.1016/j.jecp.2017.07.014CrossRefGoogle ScholarPubMed
Pendleton, SM, Cavalli, KS, Pargament, KI, et al. (2002) Religious/spiritual coping in childhood cystic fibrosis: A qualitative study. Pediatrics 109(1), . doi:10.1542/peds.109.1.e8CrossRefGoogle ScholarPubMed
Rutter, M (2012) Resilience as a dynamic concept. Development and Psychopathology 24(2), 335–344. doi:10.1017/S0954579412000028CrossRefGoogle ScholarPubMed
Schreiner, K, Grossoehme, DH, Friebert, S, et al. (2020) “Living as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer. Pediatric Blood Cancer 67(10), . doi:10.1002/pbc.28599CrossRefGoogle Scholar
Sheehan, DK, Burke Draucker, C, Christ, GH, et al. (2014) Telling adolescents a parent is dying. Journal of Palliative Medicine 17(5), 512–520. doi:10.1089/jpm.2013.0344CrossRefGoogle Scholar
Sheehan, DK, Hansen, D, Stephenson, P, et al. (2019) Telling adolescents that a parent has died. Journal of Hospice & Palliative Nursing 21(2), 152–159. doi:10.1097/NJH.0000000000000506CrossRefGoogle ScholarPubMed
Sheehan, DK, Mayo, MM, Christ, GH, et al. (2016) Two worlds: Adolescents’ strategies for managing life with a parent in hospice. Palliative & Supportive Care 14(3), 177–186. doi:10.1017/S1478951515000735CrossRefGoogle ScholarPubMed
Singh, RK, Raj, A, Paschal, S, et al. (2015) Role of communication for pediatric cancer patients and their family. Indian Journal of Palliative Care 21(3), . doi:10.4103/0973-1075.164888CrossRefGoogle ScholarPubMed
Spruit, JL, Bell, CJ, Toly, VB, et al. (2018) Knowledge, beliefs, and behaviors related to palliative care delivery among pediatric oncology health care providers. Journal of Pediatric Oncology Nursing 35(4), 247–256. doi:10.1177/1043454218764885CrossRefGoogle ScholarPubMed
Stein, A, Dalton, L, Rapa, E, et al. (2019) Communication with children and adolescents about the diagnosis of their own life-threatening condition. The Lancet 393(10176), 1150–1163. doi:10.1016/S0140-6736(18)33201-XCrossRefGoogle ScholarPubMed
Stephenson, P and Berry, D (2015) Describing spirituality at the end of life. Western Journal of Nursing Research 37(9), 1229–1247. doi:10.1177/0193945914535509CrossRefGoogle ScholarPubMed
Strauss, A and Corbin, J (1990) Basics of Qualitative Research. Thousand Oaks, CA: Sage Publications.Google Scholar
Vázquez-Sánchez, JM, Fernández-Alcántara, M, García-Caro, MP, et al. (2019) The concept of death in children aged from 9 to 11 years: Evidence through inductive and deductive analysis of drawings. Death Studies 43(8), 467–477. doi:10.1080/07481187.2018.1480545CrossRefGoogle ScholarPubMed
Vindrola‐Padros, C (2012) The everyday lives of children with cancer in Argentina: Going beyond the disease and treatment. Children & Society 26(6), 430–442. doi:10.1111/j.1099-0860.2011.00369.xCrossRefGoogle Scholar
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