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Upping my game as a parent: Attributed gains in participating in a cancer parenting program for child-rearing parents with advanced cancer

Published online by Cambridge University Press:  09 March 2020

Ellen H. Zahlis*
Affiliation:
Child, Family & Population Health Nursing, University of Washington, Seattle Campus, 1959 Pacific Street, Box 357262, Seattle, WA
Mary Ellen Shands
Affiliation:
Child, Family & Population Health Nursing, University of Washington, Seattle Campus, 1959 Pacific Street, Box 357262, Seattle, WA
Frances Marcus Lewis
Affiliation:
Child, Family & Population Health Nursing, University of Washington, Seattle Campus, 1959 Pacific Street, Box 357262, Seattle, WA
*
Author for correspondence: Ellen H. Zahlis, Child, Family & Population Health, University of Washington Seattle Campus, 1959 Pacific Street, Box 357262, Seattle, WA98195-0005, USA. E-mail: zahlis@uw.edu

Abstract

Objectives

The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered psycho-educational parenting intervention, the Enhancing Connections Program in Palliative Care.

Methods

A total of 26 parents completed the program. Parents’ responses were audio-recorded and transcribed verbatim and verified for accuracy. The analysis proceeded through four steps: unitizing, coding into categories, defining categories, and formation of a core construct that explained parents’ attributed gains. Trustworthiness of study results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail.

Results

Although 50% reached or exceeded clinical cutoff scores on anxiety and 42% reached or exceeded clinical cutoff scores on depressed mood, parents extensively elaborated what they gained. Results revealed six categories of competencies they attributed to their participation in the program: (1) being ready for a conversation about my cancer, (2) bringing things out in the open, (3) listening better to my child, (4) getting my child to open up, (5) not getting in my child's way, and (6) changing my parenting.

Conclusions

Despite an extensive symptom burden, parents with incurable cancer attributed major gains from a brief, fully scripted, cancer parenting communication intervention. A manualized telephone-delivered educational counseling program for symptomatic parents with incurable cancer has the potential to augment competencies for parents as they assist their children manage the cancer experience.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2020

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References

Barnes, J, Kroll, L, Burke, O, et al. (2000) Qualitative interview study of communication between parents and children about maternal breast cancer. British Medical Journal 173, 479481.CrossRefGoogle ScholarPubMed
Beernaert, K, Kreicbergs, U, Furst, CJ, et al. (2017) Distrust in the end-of-life care provided to a parent and long-term negative outcomes among bereaved adolescents: A population-based survey study. Journal of Clinical Oncology 35, 31363142. doi:10.1200/jco.2017.72.9814CrossRefGoogle ScholarPubMed
Bell, K and Ristovski-Slijepcevic, S (2011) Metastatic cancer and mothering: Being a mother in the face of a contracted future. Medical Anthropology 30, 629649.CrossRefGoogle ScholarPubMed
Bugge, KE, Helseth, S and Darbyshire, P (2009) Parents’ experiences of a family support program when a parent has incurable cancer. Journal of Clinical Nursing 18, 34803488. doi:10.1111/j.1365-2702.2009.02871.xCrossRefGoogle ScholarPubMed
Bylund-Grenklo, T, Kreicbergs, U, Uggla, C, et al. (2015) Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths’ opinions and experiences. Acta Oncologica 54(6), 944950. doi:10.3109/0284186x.2014.978891CrossRefGoogle ScholarPubMed
Ellis, SJ, Wakefield, CS, Antill, Gl, et al. (2017) Supporting children facing a parent's cancer diagnosis: A systematic review of children's psychosocial needs and existing interventions. European Journal of Cancer Care 26, 122. doi:10.1111/ecc.12432CrossRefGoogle ScholarPubMed
Ernst, J, Gotze, H, Krauel, K, et al. (2013) Psychological distress in cancer patients with underage children: Gender-specific differences. Psychooncology 2, 823828.CrossRefGoogle Scholar
Hailey, CE, Yopp, JM, Deal, AM, et al. (2018) Communication with children about a parent's advanced cancer and measures of parental anxiety and depression: A cross-sectional mixed-methods study. Supportive Care Cancer 26(10), 287295. doi:10.1007/s00520-017-3847-9CrossRefGoogle ScholarPubMed
Kennedy, V and Lloyd-Williams, M (2009) Information and communication when a parent has advanced cancer. Journal of Affective Disorders 114, 149155.CrossRefGoogle ScholarPubMed
Kennedy, C, McIntyre, R, Worth, A, et al. (2008) Supporting children and families facing the death of a parent: Part 2. International Journal of Palliative Nursing 14, 230237. doi:10.12968/ijpn.2008.14.5.29490CrossRefGoogle ScholarPubMed
Krippendorff, K (1980) Content Analysis: An Introduction to Its Methodology. Beverly Hills: SAGE.Google Scholar
Lewis, FM and Deal, LW (1995) Balancing our lives: A study of the married couple's experience with breast cancer recurrence. Oncology Nursing Forum 22, 943953.Google ScholarPubMed
Lewis, FM, Loggers, ET, Phillips, F, et al. (2020) Enhancing connections-palliative care: A quasi-experimental pilot feasiblity study of a cancer parenting program. Journal of Palliative Medicine 23(2), 211219. doi:10.1089/jpm.2019.0163CrossRefGoogle Scholar
Lewis, FM, Zahlis, EH, Shands, ME, et al. (1996) The functioning of single women with breast cancer and their school-aged children. Cancer Practice 4, 1524.Google ScholarPubMed
Loveys, B and Klaich, K (1991) Breast cancer: Demands of illness. Oncology Nursing Forum 18(1), 7580.Google ScholarPubMed
Nelson, E and While, D (2002) Children's of adjustment during the first year of a parent's cancer diagnosis. Journal of Psychosocial Oncology 20(1), 1536.CrossRefGoogle Scholar
Nilsson, ME, Maciejewski, PK, Zhang, B, et al. (2009) Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer 115, 399409.CrossRefGoogle ScholarPubMed
Park, EM, Check, DK, Song, M, et al. (2017) Parenting while living with advanced cancer: A qualitative study. Palliative Medicine 31(3), 231238. doi:10.1177/0269216316661686CrossRefGoogle ScholarPubMed
Phillips, F (2015) The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry. Palliative Supportive Care 13, 10571069. doi:10.1017/s1478951514001023CrossRefGoogle ScholarPubMed
Phillips, F and Lewis, FM (2015) The adolescent's experience when a parent has advanced cancer: A qualitative inquiry. Palliative Medicine 29(9), 851858. doi:10.1177/0269216315578989CrossRefGoogle ScholarPubMed
Rainville, F, Dumont, S, Simard, S, et al. (2012) Psychological distress among adolescents living with a parent with advanced cancer. Journal of Psychosocial Oncology 30(5), 519534. doi:10.1080/07347332.2012.703765CrossRefGoogle ScholarPubMed
Saldinger, A, Cain, AC, Porterfield, K, et al. (2004) Facilitating attachment between school-aged children and a dying parent. Death Studies 28(10), 915940. doi:10.1080/07481180490511993CrossRefGoogle Scholar
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), 177186. doi:10.1017/s1478951515000735CrossRefGoogle ScholarPubMed
Siegel, K, Mesagno, FP, Karus, D, et al. (1992) Psychosocial adjustment of children with a terminally ill parent. Journal of the American Academy of Child and Adolescent Psychiatry 31(2), 327333. doi:10.1097/00004583-199203000-00022CrossRefGoogle ScholarPubMed
Spradley, JP (1980) Participant Observations. New York, London: Holt Rinehart and Winston.Google Scholar
Stoppelbein, LA, Greening, L and Elkin, TD (2006) Risk of posttraumatic stress symptoms: A comparison of child survivors of pediatric cancer and parental bereavement. Journal of Pediatric Psychology 31(4), 367376. doi:10.1093/jpepsy/jsj055CrossRefGoogle ScholarPubMed
Turner, J, Kelly, B, Swanson, C, et al. (2005) Psychosocial impact of newly diagnosed advanced breast cancer. Psycho-Oncology 14, 396407.CrossRefGoogle ScholarPubMed
Weaver, KE, Rowland, JH, Alfano, CM, et al. (2010) Parental cancer and the family: A population-based estimate of the number of US cancer survivors residing with their minor children. Cancer 116(18), 43954401. doi:10.1002/cncr.25368CrossRefGoogle ScholarPubMed
Zahlis, EH and Lewis, FM (1998) Mothers’ stories of the school-age child's experience with the mother's breast cancer. Journal of Psychosocial Oncology 16(2), 2543.CrossRefGoogle Scholar
Zahlis, EH and Lewis, FM (2010) Coming to grips with breast cancer: The spouse's experience with his wife's first six months. Journal of Psychosocial Oncology 28(1), 7997. doi:10.1080/07347330903438974CrossRefGoogle ScholarPubMed