Hostname: page-component-848d4c4894-5nwft Total loading time: 0 Render date: 2024-06-09T19:19:27.449Z Has data issue: false hasContentIssue false

Advanced parental cancer and adolescents: Parenting issues and challenges

Published online by Cambridge University Press:  13 May 2024

Thepthara N. Pholsena
Affiliation:
UW Virology Research Clinic, Allergy and Infectious Disease Department, University of Washington, Seattle, WA, USA
Frances Marcus Lewis
Affiliation:
School of Nursing, University of Washington, Seattle, WA, USA Affiliate, Public Health Sciences Division, Seattle, WA, USA Member, Clinical Sciences Division, Fred Hutchinson Cancer Center, Seattle, WA, USA
Farya Phillips
Affiliation:
Steve Hicks School of Social Work, Dell Medical School, Department of Health Social Work, University of Texas at Austin, Austin, TX, USA
Elizabeth T. Loggers
Affiliation:
Division of Oncology, School of Medicine, University of Washington, Seattle, WA, USA Clinical Sciences Division, Fred Hutchinson Cancer Center, Seattle, WA, USA
Mary Rose Yockel
Affiliation:
Lombardi Comprehensive Cancer Center, Cancer Prevention and Control Program, Georgetown University, Washington, DC, USA
Ellen H. Zahlis*
Affiliation:
School of Nursing, University of Washington, Seattle, WA, USA
Mary Ellen Shands
Affiliation:
School of Nursing, University of Washington, Seattle, WA, USA
*
Corresponding author: Ellen H. Zahlis; Email: zahlis@uw.edu

Abstract

Background

An estimated 609,820 child-rearing adults in 2023 died from advanced cancer, affecting 153,675 dependent children. Although children are known to suffer significant distress when a parent is diagnosed with cancer, few studies have described parents’ views of their adolescent’s behavioral response to their advanced cancer or what the parent did to interpret or manage that response.

Objectives

To describe patient-reported concerns about their adolescent and how they responded to their adolescent’s behavior.

Methods

Single occasion interviews were administered to 6 adolescent-rearing parents with Stage IV cancer. Interviews were analyzed using inductive content analysis by trained coders. Trustworthiness of results was protected through peer debriefing, coding to consensus, and maintaining an audit trail.

Results

The core construct that explained study data was Being There without Taking Over, comprised of 4 domains: Struggling to Read My Child, Attempting to Talk with My Child about My Cancer, Trying to Maintain Optimism, and Understanding My Child.

Conclusions

Parents were deeply concerned about the impact of their advanced cancer on their adolescent but were unable to distinguish between cancer-related distress and adolescent angst. They feared initiating cancer-related discussions and struggled with their own feelings of guilt and parental inadequacy but did not turn to professionals for help.

Significance of results

Adolescent-rearing patients with advanced disease need to be triaged into services that offer a framework from which parents can interpret their child’s behavior and learn ways to have adolescent-appropriate conversations about the cancer. Such services should also help parents gain skills to manage feelings of parental inadequacy and guilt. In the absence of services, parents struggle and do not know how to interpret and respond to their adolescent’s cancer-related behavior.

Type
Original Article
Copyright
© The Author(s), 2024. Published by Cambridge University Press.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Armsden, GC and Lewis, FM (1993) The child’s adaptation to parental medical illness: Theory and clinical implications. Patient Education and Counseling 22(3), 153165. doi:10.1016/0738-3991(93)90095-ECrossRefGoogle 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(27), 31363142. doi:10.1200/jco.2017.72.9814CrossRefGoogle ScholarPubMed
Christ, GH, Siegel, K and Sperber, D (1994) Impact of parental terminal cancer on adolescents. American Journal of Orthopsychiatry 64(4), 604613. doi:10.1037/h0079569CrossRefGoogle ScholarPubMed
Compas, BE, Worsham, NL, Epping-Jordan, JE, et al. (1994) When mom or dad has cancer: Markers of psychological distress in cancer patients, spouses, and children. Health Psychology 13(6), 507515. doi:10.1037/0278-6133.13.6.507CrossRefGoogle ScholarPubMed
Compas, BE, Worsham, NL, Ey, S, et al. (1996) When mom or dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients. Health Psychology 15(3), 167175. doi:10.1037/0278-6133.15.3.167CrossRefGoogle ScholarPubMed
Corbin, J and Strauss, AL (2008) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 3rd edn. Thousand Oaks, CA: Sage.CrossRefGoogle Scholar
Ernst, J, Götze, H, Brähler, E, et al. (2012) Quality of life of parents diagnosed with cancer: Change over time and influencing factors. European Journal of Cancer Care 21(4), 535541. doi:10.1111/j.1365-2354.2012.01330.xCrossRefGoogle ScholarPubMed
Glaser, BG and Strauss, AL (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine Publishing Company.Google Scholar
Grabiak, BR, Bender, CM and Puskar, KR (2007) The impact of parental cancer on the adolescent: An analysis of the literature. Psychooncology 16(2), 127137. doi:10.1002/pon.1083CrossRefGoogle ScholarPubMed
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 in Cancer 26(1), 287295. doi:10.1007/s00520-017-3847-9CrossRefGoogle ScholarPubMed
Houldin, AD and Lewis, FM (2006) Salvaging their normal lives: A qualitative study of patients with recently diagnosed advanced colorectal cancer. Oncology Nursing Forum 33(4), 719725. doi:10.1188/06.onf.719-725CrossRefGoogle ScholarPubMed
Howell, DC (2015) Children facing parental cancer versus parental death: The buffering effects of positive parenting and emotional expression. Journal of Child and Family Studies 25, 152164. doi:10.1007/s10826-015-0198-3CrossRefGoogle 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(6), 943953.Google ScholarPubMed
Lewis, FM, Griffith, KA, Walker, A, et al. (2017) The Enhancing Connections-Telephone study: A pilot feasibility test of a cancer parenting program. Supportive Care in Cancer 25(2), 615623. doi:10.1007/s00520-016-3448-zCrossRefGoogle ScholarPubMed
Lewis, FM, Loggers, ET, Phillips, F, et al. (2020) Enhancing connections-palliative care: A quasi-experimental pilot feasibility 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. (2021) A pilot feasibility study of a group-delivered cancer parenting program: Enhancing Connections-Group. Journal of Psychosocial Oncology 39(1), 116. doi:10.1080/07347332.2020.1745987CrossRefGoogle ScholarPubMed
O’Callaghan, C, O’Brien, E, Magill, L, et al. (2009) Resounding attachment: Cancer inpatients’ song lyrics for their children in music therapy. Supportive Care in Cancer 17(9), 11491157. doi:10.1007/s00520-008-0555-5CrossRefGoogle ScholarPubMed
Park, EM, Check, DK, Song, M-K, 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 and Supportive Care 13(4), 10571069. doi:10.1017/s1478951514001023CrossRefGoogle Scholar
Phillips, F and Prezio, EA (2017) Wonders & Worries: Evaluation of a child centered psychosocial intervention for families who have a parent/primary caregiver with cancer. Psychooncology 26(7), 10061012. doi:10.1002/pon.4120CrossRefGoogle 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
Shands, ME and Lewis, FM (2021) Parents with advanced cancer: Worries about their children’s unspoken concerns. American Journal of Hospice and Palliative Medicine® 38(8), 920926. doi:10.1177/1049909120969120CrossRefGoogle ScholarPubMed
Sheehan, DK and Draucker, CB (2011) Interaction patterns between parents with advanced cancer and their adolescent children. Psychooncology 20(10), 11081115. doi:10.1002/pon.1831CrossRefGoogle ScholarPubMed
Shenton, KA (2004) Strategies for ensuring trustworthiness in qualitative research projects. Education for Information 22(2), 6375. doi:10.3233/EFI-2004-22201CrossRefGoogle Scholar
Siegel, K, Karus, D and Raveis, VH (1996) Adjustment of children facing the death of a parent due to cancer. Journal of the American Academy of Child & Adolescent Psychiatry 35(4), 442450. doi:10.1097/00004583-199604000-00010CrossRefGoogle 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 & Adolescent Psychiatry 31(2), 327333. doi:10.1097/00004583-199203000-00022CrossRefGoogle ScholarPubMed
Siegel, RL, Miller, KD, Wagle, NS, et al. (2023) Cancer Statistics, 2023. CA: A Cancer Journal for Clinicians 73(1), 1748. doi:10.3322/caac.21763Google Scholar
Turner, J, Clavarino, A, Yates, P, et al. (2007) Development of a resource for parents with advanced cancer: What do parents want? Palliative and Supportive Care 5(2), 135145. doi:10.1017/S1478951507070204CrossRefGoogle ScholarPubMed
Turner, J, Kelly, B, Swanson, C, et al. (2005) Psychosocial impact of newly diagnosed advanced breast cancer. Psychooncology 14(5), 396407. doi:10.1002/pon.856CrossRefGoogle 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 Scholar
Welch, AS, Wadsworth, ME and Compas, BE (1996) Adjustment of children and adolescents to parental cancer. Parents’ and children’s perspectives. Cancer 77(7), 14091418. doi:10.1002/(sici)1097-0142(19960401)77:7<1409::aid-cncr28>3.0.co;2-43.0.CO;2-4>CrossRefGoogle ScholarPubMed
Zahlis, EH (2001) The child’s worries about the mother’s breast cancer: Sources of distress in school-age children. Oncology Nursing Forum 28(6), 10191025.Google 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. doi:10.1300/J077V16N02_02CrossRefGoogle 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
Zahlis, EH, Shands, ME and Lewis, FM (2020) Upping my game as a parent: Attributed gains in participating in a cancer parenting program for child-rearing parents with advanced cancer. Palliative and Supportive Care 18(3), 339345. doi:10.1017/S1478951520000103CrossRefGoogle Scholar