Parenting while living with advanced cancer: A qualitative study

Abstract

Background:

Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs.

Aim:

To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status.

Design:

We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis.

Setting and participants:

A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0–1) and 17 with low functional status (ECOG=2–4).

Results:

We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) “missing out” and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns.

Conclusion:

Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

Keywords

Parents parenting cancer neoplasm

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References

Miniño

. Death in the United States, 2011. NCHS Data Brief, No. 115, 2013, pp. 1–8, https://www.cdc.gov/nchs/data/databriefs/db115.pdf

Weaver

Rowland

Alfano

. Parental cancer and the family: a population-based estimate of the number of US cancer survivors residing with their minor children. Cancer 2010; 116: 4395–4401.

Semple

McCance

. Parents’ experience of cancer who have young children: a literature review. Cancer Nurs 2010; 33: 110–118.

Lewis

Brandt

Cochrane

. The enhancing connections program: a six-state randomized clinical trial of a cancer parenting program. J Consult Clin Psychol 2015; 83: 12–23.

Aamotsmo

Bugge

. Balance artistry: the healthy parent’s role in the family when the other parent is in the palliative phase of cancer—challenges and coping in parenting young children. Palliat Support Care 2013; 12: 317–329.

Moore

Rauch

Baer

. Parenting changes in adults with cancer. Cancer 2015; 121: 3551–3557.

Bell

Ristovski-Slijepcevic

. Metastatic cancer and mothering: being a mother in the face of a contracted future. Med Anthropol 2011; 30: 629–649.

Nilsson

Maciejewski

Zhang

. Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer 2009; 115: 399–409.

Zaider

Salley

Terry

. Parenting challenges in the setting of terminal illness: a family-focused perspective. Curr Opin Support Palliat Care 2015; 9: 52–57.

10.

Park

Deal

Check

. Parenting concerns, quality of life, and psychological distress in patients with advanced cancer. Psychooncology. Epub ahead of print 17 August 2015. DOI: 10.1002/pon.3935.

11.

Zaider

Kissane

. The assessment and management of family distress during palliative care. Curr Opin Support Palliat Care 2009; 3: 67–71.

12.

Rauch

Muriel

. The importance of parenting concerns among patients with cancer. Crit Rev Oncol Hematol 2004; 49: 37–42.

13.

Visser

Huizinga

van der Graaf

. The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev 2004; 30: 683–694.

14.

Helseth

Ulfsaet

. Parenting experiences during cancer. J Adv Nurs 2005; 52: 38–46.

15.

Lewis

Casey

Brandt

. The enhancing connections program: pilot study of a cognitive-behavioral intervention for mothers and children affected by breast cancer. Psychooncology 2006; 15: 486–497.

16.

Siegel

Karus

Raveis

. Adjustment of children facing the death of a parent due to cancer. J Am Acad Child Adolesc Psychiatry 1996; 35: 442–450.

17.

Swick

Rauch

. Children facing the death of a parent: the experiences of a parent guidance program at the Massachusetts General Hospital Cancer Center. Child Adolesc Psychiatr Clin N Am 2006; 15: 779–794.

18.

Kennedy

Lloyd-Williams

. How children cope when a parent has advanced cancer. Psychooncology 2009; 18: 886–892.

19.

Beale

Sivesind

Bruera

. Parents dying of cancer and their children. Palliat Support Care 2004; 2: 387–393.

20.

Denzin

Lincoln

. The SAGE handbook of qualitative research, 4th ed. Thousand Oaks, CA: SAGE, 2011.

21.

Teddlie

. Mixed methods sampling a typology with examples. J Mix Method Res 2007; 1: 77–100.

22.

Sandelowski

. Sample size in qualitative research. Res Nurs Health 1995; 18: 179–183.

23.

Hewitt-Taylor

. Use of constant comparative analysis in qualitative research. Nurs Stand 2001; 15: 39–42.

24.

Hsieh

Shannon

. Three approaches to qualitative content analysis. Qual Health Res 2005; 15: 1277–1288.

25.

Sandelowski

. Qualitative analysis: what it is and how to begin. Res Nurs Health 1995; 18: 371–375.

26.

Turner

Clavarino

Yates

. Development of a resource for parents with advanced cancer: what do parents want? Palliat Support Care 2007; 5: 135–145.

27.

Turner

Kelly

Swanson

. Psychosocial impact of newly diagnosed advanced breast cancer. Psychooncology 2005; 14: 396–407.

28.

Elmberger

Bolund

Lutzen

. Transforming the exhausting to energizing process of being a good parent in the face of cancer. Health Care Women Int 2000; 21: 485–499.

29.

Bugge

Helseth

Darbyshire

. Parents’ experiences of a Family Support Program when a parent has incurable cancer. J Clin Nurs 2009; 18: 3480–3488.

30.

Cella

Tulsky

Gray

. The Functional Assessment of Cancer Therapy Scale: development and validation of the general measure. J Clin Oncol 1993; 11: 570–579.

31.

Jacobsen

Donovan

Trask

. Screening for psychologic distress in ambulatory cancer patients. Cancer 2005; 103: 1494–1502.

32.

Turner

Clavarino

Yates

. Oncology nurses’ perceptions of their supportive care for parents with advanced cancer: challenges and educational needs. Psychooncology 2007; 16: 149–157.

33.

Cahn

. Planning options for the daily care of a minor in the event of an adult’s incapacity or death. In: D’Aversa

(ed.) Tax, estate, and lifetime planning for minors. Chicago: ABA Publishing, 2006, p. 125.

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