Skip to main content

Advertisement

SpringerLink
Log in

Parenting experiences of cancer patients with minor children and their conversations about the possibility of death: a cross-sectional web-based survey for an online cancer community

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Many cancer patients with minor children experience difficulty talking about their illness with their children. This study aimed to investigate the parenting experiences of cancer patients with minor children and their conversations about the possibility of death.

Methods

A cross-sectional web-based survey was conducted between April and May 2019. Cancer patients with at least one child aged < 18 years were recruited from an online peer support group called “Cancer Parents.” The participants were asked to complete a questionnaire about their experiences of talking about their illnesses with their children. The participants were classified into those who disclosed their cancer to their children (“disclosing group”), and those who did not disclose (“non-disclosing group”). The association between whether they talked with their children about their cancer, and whether it included conversations about the possibility of death, was examined.

Results

A total of 370 parents participated (with 80.8% female parents, with a median age of 43.0 years). The disclosing group (n = 274, 74.1%) wanted to know what their child felt, more than the non-disclosing group did (p < 0.001). Members of the non-disclosing group had a greater tendency than those in the disclosing group to report that they did not want their children to see their suffering (p = 0.002) and did not know how to explain their disease status (p < 0.002). Some members of both the disclosing (42.1%) and non-disclosing (6.5%) groups told their children about the possibility of death.

Conclusion

This study showed that 74.1% of the patients with minor children disclosed their cancer to their children. The parents’ feelings when thinking about interacting with their children differed significantly between the disclosing and non-disclosing groups. It is important for healthcare professionals treating patients with cancer to provide appropriate multidisciplinary support for discussing their diagnosis and prognosis with their children.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

Not applicable.

Code availability

Not applicable.

Notes

  1. http://www.medi-l.com

References

  1. Minino AM (2013) Death in the United States. NCHS Data Brief 2011:1–8

    Google Scholar 

  2. Rauch PK, Muriel AC, Cassem NH (2002) Parents With Cancer: Who’s Looking After the Children? J Clin Oncol 20:4399–4402

    Article  Google Scholar 

  3. Semple CJ, McCance T (2010) Parents’ experience of cancer who have young children: a literature review. Cancer Nurs 33:110–118

    Article  Google Scholar 

  4. Kennedy VL, Lloyd-Williams M (2009) Information and communication when a parent has advanced cancer. J Affect Disord 114:149–155

    Article  Google Scholar 

  5. Barnes J, Kroll L, Burke O, Lee J, Jones A, Stein A (2000) Qualitative interview study of communication between parents and children about maternal breast cancer. BMJ (Clinical research ed) 321:479–482

    Article  CAS  Google Scholar 

  6. Bugge KE, Helseth S, Darbyshire P (2009) Parents’ experiences of a Family Support Program when a parent has incurable cancer. J Clin Nursing 18:3480–3488

    Article  Google Scholar 

  7. Rosenheim E, Reicher R (1985) Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Discip 26:995–998

    Article  CAS  Google Scholar 

  8. Nelson E, Sloper P, Charlton A, While D (1994) Children who have a parent with cancer: a pilot study Journal of cancer education : the official journal of the American Association for Cancer. Education 9:30–36

    CAS  Google Scholar 

  9. Kosugi K, Nishiguchi Y, Miura T, Fujisawa D, Kawaguchi T, Izumi K, Takehana J, Uehara Y, Usui Y, Terada T, Inoue Y, Natsume M, Yajima MY, Watanabe YS, Okizaki A, Matsushima E, Matsumoto Y (2021) Association between loneliness and the frequency of using online peer support groups among cancer patients with minor children: a Cross-Sectional Web-Based Study. J Pain Symptom Manage 61:955–962

    Article  Google Scholar 

  10. Hirooka K, Otani H, Morita T, Miura T, Fukahori H, Aoyama M (2018) End-of-life experiences of family caregivers of deceased patients with cancer: a nation-wide survey. Psychooncology 27:272–278

    Article  Google Scholar 

  11. Muriel AC, Moore CW, Baer L, Park ER, Kornblith AB, Pirl W, Prigerson H, Ing J, Rauch PK (2012) Measuring psychosocial distress and parenting concerns among adults with cancer: the Parenting Concerns Questionnaire. Cancer 118:5671–5678

    Article  Google Scholar 

  12. Pinquart M, Duberstein PR (2010) Associations of social networks with cancer mortality: a meta-analysis. Crit Rev Oncol Hematol 75:122–137

    Article  Google Scholar 

  13. Fearnley R, Boland JW (2017) Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: a systematic review. Palliat Med 31:212–222

    Article  Google Scholar 

  14. Helseth S, Ulfsaet N (2005) Parenting experiences during cancer. J Adv Nurs 52:38–46

    Article  Google Scholar 

  15. You JJ, Downar J, Fowler RA, Lamontagne F, Ma IWY, Jayaraman D, Kryworuchko J, Strachan PH, Ilan R, Nijjar AP, Neary J, Shik J, Brazil K, Patel A, Wiebe K, Albert M, Palepu A, Nouvet E, Ordons AR, Sharma N, Abdul-Razzak A, Jiang X, Day A, Heyland DK (2015) Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a Multicenter Survey of Clinicians JAMA. Int Med 175:549–556

    Google Scholar 

  16. Kennedy VL, Lloyd-Williams M (2009) How children cope when a parent has advanced cancer. Psychooncology 18:886–892

    Article  Google Scholar 

  17. Lundquist M (2017) Fathers facing advanced cancer: an Exploratory Study. J Soc Work End Life Palliat Care 13:266–283

    Article  Google Scholar 

  18. Alvariza A, Lövgren M, Bylund-Grenklo T, Hakola P, Fürst CJ, Kreicbergs U (2017) How to support teenagers who are losing a parent to cancer: Bereaved young adults’ advice to healthcare professionals—a nationwide survey. Palliat Support Care 15:313–319

    Article  Google Scholar 

  19. Macpherson C, Emeleus M (2007) Children’s needs when facing the death of a parent from cancer: part one. Int J Palliat Nurs 13:478–485

    Article  Google Scholar 

  20. Phillips F, Lewis FM (2015) The adolescent’s experience when a parent has advanced cancer: a qualitative inquiry. Palliat Med 29:851–858

    Article  Google Scholar 

  21. Buchwald D, Delmar C, Schantz-Laursen B (2012) How children handle life when their mother or father is seriously ill and dying. Scand J Caring Sci 26:228–235

    Article  Google Scholar 

  22. Wilson JM (2006) Child life services Pediatrics 118:1757–1763

    PubMed  Google Scholar 

  23. Shallcross AJ, Visvanathan PD, McCauley R, Clay A, van Dernoot PR (2016) The effects of the CLIMB® program on psychobehavioral functioning and emotion regulation in children with a parent or caregiver with cancer: a pilot study. J Psycho Oncol 34:259–273

    Article  Google Scholar 

  24. Ruddy KJ, Greaney ML, Sprunck-Harrild K, Meyer ME, Emmons KM, Partridge AH (2013) Young women with breast cancer: a Focus Group Study of Unmet Needs. J Adolesc Young Adult Oncol 2:153–160

    Article  Google Scholar 

  25. Inoue I, Higashi T, Iwamoto M, Heiney SP, Tamaki T, Osawa K, Inoue M, Shiraishi K, Kojima R, Matoba M (2015) A national profile of the impact of parental cancer on their children in Japan. Cancer Epidemiol 39:838–841

    Article  Google Scholar 

  26. Nilsson ME, Maciejewski PK, Zhang B, Wright AA, Trice ED, Muriel AC, Friedlander RJ, Fasciano KM, Block SD, Prigerson HG (2009) Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer 115:399–409

    Article  Google Scholar 

  27. Ernst JC, Beierlein V, Romer G, Möller B, Koch U, Bergelt C (2013) Use and need for psychosocial support in cancer patients: a population-based sample of patients with minor children. Cancer 119:2333–2341

    Article  Google Scholar 

  28. Park EM, Deal AM, Check DK, Hanson LC, Reeder-Hayes KE, Mayer DK, Yopp JM, Song MK, Muriel AC, Rosenstein DL (2016) Parenting concerns, quality of life, and psychological distress in patients with advanced cancer. Psycho-oncology 25:942–948

    Article  Google Scholar 

Download references

Funding

This study was funded by the Takeda Science Foundation.

Author information

Authors and Affiliations

  1. Department of Palliative Medicine, National Cancer Center Hospital East, Kashiwa, Japan

    Yuko Usui, Kazuhiro Kosugi, Tomofumi Miura, Yuko Uehara & Yoshihisa Matsumoto

  2. Department of Palliative Therapy, Cancer Institute Hospital of Japanese Foundation for Cancer Research, Tokyo, Japan

    Yuko Usui

  3. Department of Psychiatry and Behavioral Sciences, Graduate School of Medical and Dental Sciences, Tokyo Medical and Dental University, Tokyo, Japan

    Kazuhiro Kosugi

  4. General Incorporated Association Cancer Parents, Tokyo, Japan

    Yohei Nishiguchi

  5. Department of Neuropsychiatry, Keio University School of Medicine, Tokyo, Japan

    Daisuke Fujisawa

  6. Department of Palliative Medicine, Juntendo University Graduate School of Medicine, Tokyo, Japan

    Yuko Uehara

  7. Department of Practical Pharmacy, Tokyo University of Pharmacy and Life Sciences, Hachioji, Japan

    Takashi Kawaguchi

  8. Insight & Analytics Department, Medilead Inc, Tokyo, Japan

    Kayo Izumi & Jun Takehana

Authors
  1. Yuko Usui
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kazuhiro Kosugi
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Yohei Nishiguchi
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Tomofumi Miura
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Daisuke Fujisawa
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Yuko Uehara
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Takashi Kawaguchi
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Kayo Izumi
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Jun Takehana
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Yoshihisa Matsumoto
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

Yuko Usui: study design; development of questionnaire; analysis; writing manuscript; review; approval of manuscript. Kazuhiro Kosugi: study design; development of questionnaire; analysis; review; approval of manuscript. Yohei Nishiguchi: study design; development of questionnaire. Tomofumi Miura: study design; development of questionnaire; analysis; writing manuscript; review; approval of manuscript. Daisuke Fujisawa: review; approval of manuscript. Yuko Uehara: review; approval of manuscript. Takashi Kawaguchi: study design; analysis; review; approval of manuscript. Kayo Izumi: analysis. Jun Takehana: analysis; review; approval of manuscript. Yoshihisa Matsumoto: review; approval of manuscript.

Corresponding author

Correspondence to Tomofumi Miura.

Ethics declarations

Ethics approval

This study was conducted according to the Declaration of Helsinki and was approved by the Institutional Review Board of the National Cancer Center, Japan (approval number 2018–360).

Consent to participate

The questionnaire included a check box to declare disagreement with participation. Therefore, participants who answered and returned the questionnaire without filling the check box were considered to agree to their participation.

Consent for publication

A letter of request explained the publication of this study. Therefore, participants who answered and returned the questionnaire were considered to be in agreement with the publication.

Conflict of interest

The authors declare no conflict of interest.

Additional information

Dedicated to Yohei Nishiguchi passed away during the preparation of this study.

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Data sharing statement

Due to the sensitive nature of the questions asked in this study, the survey respondents were assured that raw data would remain confidential and would not be shared.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 31 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Usui, Y., Kosugi, K., Nishiguchi, Y. et al. Parenting experiences of cancer patients with minor children and their conversations about the possibility of death: a cross-sectional web-based survey for an online cancer community. Support Care Cancer 30, 7715–7720 (2022). https://doi.org/10.1007/s00520-022-07220-1

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-022-07220-1

Keywords

Search

Navigation