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End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families

Published online by Cambridge University Press:  01 March 2021

Ansley E. Kenney Open the ORCID record for Ansley E. Kenney [Opens in a new window] ,
Sima Zadeh Bedoya ,
Cynthia A. Gerhardt ,
Tammi Young-Saleme  and
Lori Wiener Open the ORCID record for Lori Wiener [Opens in a new window]
Ansley E. Kenney*
Affiliation:
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH
Sima Zadeh Bedoya
Affiliation:
Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD
Cynthia A. Gerhardt
Affiliation:
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH
Tammi Young-Saleme
Affiliation:
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH
Lori Wiener
Affiliation:
Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD
*
Author for correspondence: Ansley Kenney, Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA. E-mail: [email protected]
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Abstract

Objectives

Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.

Methods

Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis.

Results

Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.

Significance of results

Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

Keywords

CaregiverCommunicationEnd of lifeOncologyPediatric
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 6 , December 2021 , pp. 715 - 722
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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References

REFERENCES

Adams, G, Green, A, Towe, S, et al. (2013) Bereaved caregivers as educators in pediatric palliative care: Their experiences and impact. Journal of Palliative Medicine 16(6), 609–615. doi:10.1089/jpm.2012.0475CrossRefGoogle ScholarPubMed
Aldridge, J, Shimmon, K, Miller, M, et al. (2017) 'I can't tell my child they are dying'. Helping parents have conversations with their child. Archives of Disease in Childhood. Education and Practice Edition 102, 182–187. doi:10.1136/archdischild-2016-311974CrossRefGoogle ScholarPubMed
Bates, AT and Kearney, JA (2015) Understanding death with limited experience in life: Dying children's and adolescents’ understanding of their own terminal illness and death. Current Opinion in Supportive and Palliative Care 9(1), 40–45. doi:10.1097/SPC.0000000000000118CrossRefGoogle ScholarPubMed
Beale, EA, Baile, WF and Aaron, J (2005) Silence is not golden: Communicating with children dying from cancer. Journal of Clinical Oncology 23, 3629–3631. doi:10.1200/JCO.2005.11.015CrossRefGoogle ScholarPubMed
Bluebond-Langner, M (1980) The Private Worlds of Dying Children. Princeton: Princeton University Press.Google Scholar
Chesler, MA, Paris, J and Barbarin, OA (1986) “Telling” the child with cancer: Parental choices to share information with ill children. Journal of Pediatric Psychology 11(4), 497–516. doi:10.1093/jpepsy/11.4.497CrossRefGoogle ScholarPubMed
Coyne, I and Gallagher, P (2011) Participation in communication and decision-making: Children and young people's experiences in a hospital setting. Journal of Clinical Nursing 20, 2334–2343.CrossRefGoogle Scholar
Ekberg, S, Danby, S, Rendle-Short, J, et al. (2018) Discussing death: Making end of life implicit or explicit in paediatric palliative care consultations. Patient Education and Counseling, in press. doi:10.1016/j.pec.2018.08.014Google ScholarPubMed
Ellis, R and Leventhal, B (1993) Information needs and decision-making preferences of children with cancer. Psycho-Oncology 2, 277–284.CrossRefGoogle Scholar
Goldman, A and Christie, D (1993) Children with cancer talk about their own death with their families. Pediatric Hematology and Oncology 10, 223–231. doi:10.3109/08880019309029488CrossRefGoogle ScholarPubMed
Granek, L, Krzyzanowska, MK, Tozer, R, et al. (2013) Oncologists’ strategies and barriers to effective communication about the end of life. Journal of Oncology Practice 9(4), e129–e135. doi:10.1200/JOP.2012.000800CrossRefGoogle ScholarPubMed
Himelstein, BP, Hilden, JM, Boldt, AM, et al. (2004) Pediatric palliative care. New England Journal of Medicine 350, 1752–1762. doi:10.1056=NEJMra030334CrossRefGoogle ScholarPubMed
Jalmsell, L, Kontio, T, Stein, M, et al. (2015) On the child's own initiative: Parents communicate with their dying child about death. Death Studies 39, 111–117. doi:10.1080/07481187.2014.913086CrossRefGoogle ScholarPubMed
Jankovic, M, Spinetta, JJ, Masera, G, et al. (2008) Communicating with the dying child: An invitation to listening—a report of the SIOP working committee on psychosocial issues in pediatric oncology. Pediatric Blood & Cancer 50(5), 1087–1088. doi:10.1002/pbc.21533CrossRefGoogle Scholar
Keim, MC, Lehmann, V, Shultz, EL, et al. (2017) Parent–child communication and adjustment among children with advanced and non-advanced cancer in the first year following diagnosis or relapse. Journal of Pediatric Psychology 42, 871–881. doi:10.1093/jpepsy/jsx058CrossRefGoogle ScholarPubMed
Kreicbergs, U, Valdimarsdóttir, U, Onelöv, E, et al. (2004) Talking about death with children who have severe malignant disease. New England Journal of Medicine 351(12), 1175–1186. doi:10.1056/NEJMoa040366CrossRefGoogle ScholarPubMed
LoBiondo-Wood, G and Haber, J (2006) Nursing Research: Methods and Critical Appraisal for Evidence-Based Practice, 6th ed. St. Louis, MO: Mosby.Google Scholar
Mack, JW and Joffe, S (2014) Communicating about prognosis: Ethical responsibilities of pediatricians and parents. Pediatrics 133(suppl 1), S24–S30. doi:1542/peds.2013-3608ECrossRefGoogle ScholarPubMed
Mack, JW and Wolfe, J (2006) Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Current Opinion in Pediatrics 18(1), 10–14. doi:10.1097/01.mop.0000193266.86129.47CrossRefGoogle ScholarPubMed
Mack, JW, Fasciano, KM and Block, SD (2018) Communication about prognosis with adolescent and young adult patients With cancer: Information needs, prognostic awareness, and outcomes of disclosure. Journal of Clinical Oncology 36(18), 1861–1867. doi:10.1200/JCO.2018.78.2128CrossRefGoogle Scholar
Marsac, ML, Kindler, C, Weiss, DJ, et al. (2018) Let's talk about it: Supporting family communication during end-of-life care of pediatric patients. Journal of Palliative Medicine 21, 862–878. doi:10.1089/jpm.2017.0307CrossRefGoogle ScholarPubMed
Pao, M and Mahoney, MR (2018) “Will you remember me?” Talking with adolescents about death and dying. Child and Adolescent Psychiatric Clinics of North America 27, 511–526. doi:10.1016/j.chc.2018.05.001CrossRefGoogle ScholarPubMed
Pew Research Center (2019) Internet/Broadband Fact Sheet. Retrieved from: https://www.pewinternet.org/fact-sheet/internet-broadband/Google Scholar
Rosenberg, AR, Wolfe, J, Wiener, L, et al. (2016) Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Pediatrics 170(12), 1216–1223. doi:10.1001/jamapediatrics.2016.2142CrossRefGoogle ScholarPubMed
Sahler, OJ, Frager, G, Levetown, M, et al. (2000) Medical education about end-of-life care in the pediatric setting: Principles, challenges, and opportunities. Pediatrics 105(3), 575–584. doi:10.1542/peds.105.3.575CrossRefGoogle ScholarPubMed
Siegel, RL, Miller, KD and Jemal, A (2018) Cancer statistics, 2018. CA: A Cancer Journal for Clinicians 68(1), 7–30. doi:10.3322/caac.21442Google ScholarPubMed
Sisk, BA, Bluebond-Langner, M, Wiener, L, et al. (2016) Prognostic disclosures to children: A historical perspective. Pediatrics 138(3), e20161278. doi:10.1542/peds.2016-1278CrossRefGoogle ScholarPubMed
Sisk, BA, Mack, JW, Ashworth, R, et al. (2018) Communication in pediatric oncology: State of the field and research agenda. Pediatric Blood & Cancer 65, e26727. doi:10.1002/pbc.26727.CrossRefGoogle ScholarPubMed
Snaman, JM, Kaye, EC, Spraker-Perlman, H, et al. (2018) Incorporating bereaved parents as faculty facilitators and educators in teaching principles of palliative and end-of-life care. American Journal of Hospice & Palliative Medicine 35(12), 1518–1525. doi:10.1177/1049909118786875CrossRefGoogle ScholarPubMed
Sourkes, BM (2018) Children's artwork: Its value in psychotherapy in pediatric palliative care. Child and Adolescent Psychiatric Clinics of North America 27(4), 551–565. doi:10.1016/j.chc.2018.05.004CrossRefGoogle ScholarPubMed
Spinetta, JJ, Jankovic, M, Masera, G, et al. (2009) Optimal care for the child with cancer: A summary statement from the SIOP working committee on psychosocial issues in pediatric oncology. Pediatric Blood & Cancer 52(7), 904–907. doi:10.1002/pbc.21863CrossRefGoogle ScholarPubMed
Stein, A, Dalton, L, Rapa, E, et al. (2019) Communication with children and adolescents about the diagnosis of their own life-threatening condition. Lancet 393(10176), 1150–1163. doi:10.1016/S0140-6736(18)33201-XCrossRefGoogle Scholar
Tager, J, Battles, H, Bedoya, SZ, et al. (2019) Participation in online research examining end-of-life experiences: Is it beneficial, burdensome, or both for parents bereaved by childhood cancer? Journal of Pediatric Oncology Nursing 36, 170–177. doi:10.1177/1043454219836963CrossRefGoogle ScholarPubMed
Theunissen, JM, Hoogerbrugge, PM, van Achterberg, T, et al. (2007) Symptoms in the palliative phase of children with cancer. Pediatric Blood & Cancer 49, 160–165.CrossRefGoogle ScholarPubMed
Weaver, MS, Heinze, KE, Kelly, KP, et al. (2015) Palliative care as a standard of care in pediatric oncology. Pediatric Blood & Cancer 62(suppl 5), S829–S833. doi:10.1002/pbc.25695CrossRefGoogle ScholarPubMed
Weaver, MS, Heinze, KE, Bell, CJ, et al. (2016) Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliative Medicine 30, 212–223. doi:10.1177/0269216315583446CrossRefGoogle ScholarPubMed
Wiener, L, McConnell, DG, Latella, L, et al. (2013) Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care 11(1), 47–67. doi:10.1017/S1478951511001027CrossRefGoogle ScholarPubMed
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 & Cancer 62, S419–S424. doi:10.1002/pbc.25675CrossRefGoogle ScholarPubMed
Wiener, L, Tager, J, Mack, J, et al. (2020) Helping parents prepare for their child's end-of-life: A retrospective survey of cancer-bereaved parents. Pediatric Blood & Cancer 67(2), e27993. doi:10.1002/pbc.27993CrossRefGoogle ScholarPubMed
Wolfe, J, Klar, N, Grier, HE, et al. (2000) Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. JAMA 284(19), 2469–2475.CrossRefGoogle ScholarPubMed
Young, B, Dixon-Woods, M, Windridge, KC, et al. (2003) Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. BMJ 326(7384), 305. doi:10.1136/bmj.326.7384.305CrossRefGoogle ScholarPubMed
Young, B, Ward, J, Salmon, P, et al. (2011) Parents’ experiences of their children's presence in discussions with physicians about leukemia. Pediatrics 127(5), e1230–e1238. doi:10.1542/peds.2010-2402CrossRefGoogle ScholarPubMed
Zadeh, S, Pao, M and Wiener, L (2015) Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults. Palliative & Supportive Care 13, 591–599. doi:10.1017/S1478951514000054CrossRefGoogle ScholarPubMed