Children and young adults with parents with cancer: a population-based study

Astri Syse, Gjøril B Aas, Jon H Loge, Astri Syse, Gjøril B Aas, Jon H Loge

Abstract

Background: Today many people are choosing to have children later in life. Additionally, the use of sophisticated diagnostic tools and screening modalities has increased over recent years. Because of these factors, cancer is being diagnosed more frequently during the child-rearing years. Sociodemographic and cancer-related information on families and minor (0-18 years) and young adult (YA) (19-25 years) children experiencing parental cancer is scarce, but this information is vital for healthcare initiatives aimed toward those potentially adversely affected. Therefore, the aim of this study was to describe features of families and minor and YA children affected by parental cancer in a nationwide population.

Methods: Complete Norwegian birth cohort data were obtained from national registries. Descriptive prevalence and incidence statistics were collected for parents and minor and YA children. Logistic regression models were used to assess factors likely to influence parental death.

Results: Every year around 0.3% of all families with children under the age of 18 years encounter parental cancer, and 3.1% of minors and 8.4% of YAs have a parent who has been diagnosed with cancer. This study found skin, breast, testicular, and colorectal cancers were the most common forms of cancer diagnosed. The sociodemographic features of those affected were fairly similar to those of the general population. One in five children experienced parental death from cancer; parental death was more often paternal than maternal and was most common in parents diagnosed with leukemia or brain, colorectal, and lung tumors. Deaths are uncommon among parents without cancer.

Conclusion: Adequate assistance for minor and YA children affected by parental cancer requires knowledge of their number and characteristics. Parental cancer is more common than previously suggested: the annual incidence of parental cancer for children under 18 years of age is 0.3%, whereas approximately 4% of children aged 0-25 years have or have had parents diagnosed with cancer, corresponding to a population prevalence of 1.4%. Around 20% of these children experience parental death, and surveys of live respondents should account for this.

Keywords: Norway; incidence; neoplasm; parental cancer; prevalence.

References

    1. Hewitt M, Stovall E, Greenfield S. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006.
    1. Ferlay J, Shin HR, Bray F, Foreman D, Mathers C, Parkin DM. GLOBOCAN 2008, Cancer Incidence and Mortality Worldwide: IARC CancerBase No 10 [Internet] Lyon, France: International Agency for Research on Cancer; 2010. [Accessed September 9, 2010]. Available from: .
    1. Schmitt F, Santalahti P, Saarelainen S, Savonlahti E, Romer G, Piha J. Cancer families with children: factors associated with family functioning: a comparative study in Finland. Psychooncology. 2008;17(4):363–372.
    1. Vannatta K, Ramsey RR, Noll RB, Gerhardt CA. Associations of child adjustment with parent and family functioning: comparison of families of women with and without breast cancer. J Dev Behav Pediatr. 2010;31(1):9–16.
    1. Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psychooncology. 2007;16(2):101–126.
    1. Thastum M, Watson M, Kienbacher C, et al. Prevalence and predictors of emotional and behavioural functioning of children where a parent has cancer: a multinational study. Cancer. 2009;115(17):4030–4039.
    1. Moore CW, Rauch PK. Addressing the needs of children when a parent has cancer. In: Holland JC, editor. Psycho-Oncology. 2nd ed. Oxford; Oxford University Press; 2010. pp. 527–531.
    1. Visser A, Huizinga GA, Hoekstra HJ, van der Graaf WT, Hoekstra-Weebers JE. Parental cancer: characteristics of parents as predictors for child functioning. Cancer. 2006;106(5):1178–1187.
    1. Visser A, Huizinga GA, Hoekstra HJ, et al. Emotional and behavioural functioning of children of a parent diagnosed with cancer: a cross-informant perspective. Psychooncology. 2005;14(9):746–758.
    1. Rauch PK, Muriel AC, Cassem NH. Parents with cancer: who’s looking after the children? J Clin Oncol. 2003;21(9 Suppl):S117–S121.
    1. Visser A, Huizinga GA, van der Graaf WT, Hoekstra HJ, Hoekstra-Weebers JE. The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev. 2004;30(8):683–694.
    1. Semple CJ, McCance T. Parents’ experience of cancer who have young children: a literature review. Cancer Nurs. 2010;33(2):110–118.
    1. Welch AS, Wadsworth ME, Compas BE. Adjustment of children and adolescents to parental cancer: parents’ and children’s perspectives. Cancer. 1996;77(7):1409–1418.
    1. Pearce NJ, Sanson-Fisher R, Campbell HS. Measuring quality of life in cancer survivors: a methodological review of existing scales. Psychooncology. 2008;17(7):629–640.
    1. Lewis FM. Parental cancer and dependent children: selected issues for future research. Psychooncology. 2007;16(2):97–98.
    1. Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population-based estimate of the number of US cancer survivors residing with their minor children. Cancer. 2010;116(18):4395–4401.
    1. Larsen IK, Småstuen M, Johannesen TB, et al. Data quality at the Cancer Registry of Norway: an overview of comparability, completeness, validity and timeliness. Eur J Cancer. 2009;45(7):1218–1231.
    1. Statistics Norway. Population. Oslo: Statistics Norway; [Accessed April 5, 2011]. [updated 2009]. Available from:
    1. Organization for Economic Cooperation and Development (OECD) Child poverty. Paris: OECD; [Accessed July 6, 2011]. [updated 2010]. Available from: .
    1. Grabiak BR, Bender CM, Puskar KR. The impact of parental cancer on the adolescent: an analysis of the literature. Psychooncology. 2007;16(2):127–137.
    1. Syse A. Does cancer affect marriage rates? J Cancer Surviv. 2008;2(3):205–214.
    1. Syse A, Kravdal O. Does cancer affect the divorce rate? Demographic Res. 2007;16(15):469–492.
    1. Syse A, Kravdal O, Tretli S. Parenthood after cancer: a population-based study. Psychooncology. 2007;16(10):920–927.
    1. Garcia SF, Hahn EA, Jacobs EA. Addressing low literacy and health literacy in clinical oncology practice. J Support Oncol. 2010;8(2):64–69.
    1. Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA Cancer J Clin. 2002;52(3):134–149.
    1. Health literacy: report of the Council on Scientific Affairs; Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. JAMA. 1999;281(6):552–557.
    1. Mehnert A. Employment and work-related issues in cancer survivors. Crit Rev Oncol Hematol. 2011;77(2):109–130.
    1. Syse A, Tretli S, Kravdal O. Cancer’s impact on employment and earnings: a population-based study from Norway. J Cancer Surviv. 2008;2(3):149–158.
    1. Annunziato RA, Rakotomihamina V, Rubacka J. Examining the effects of maternal chronic illness on child well-being in single parent families. J Dev Behav Pediatr. 2007;28(5):386–391.
    1. Lindqvist B, Schmitt F, Santalahti P, Romer G, Piha J. Factors associated with the mental health of adolescents when a parent has cancer. Scand J Psychol. 2007;48(4):345–351.
    1. Turner J. Children’s and family needs of young women with advanced breast cancer: a review. Palliat Support Care. 2004;2(1):55–64.
    1. Christ GH, Siegel K, Sperber D. Impact of parental terminal cancer on adolescents. Am J Orthopsychiatry. 1994;64(4):604–613.
    1. Kennedy VL, Lloyd-Williams M. How children cope when a parent has advanced cancer. Psychooncology. 2009;18(8):886–892.
    1. Schmitt F, Piha J, Helenius H, et al. Multinational study of cancer patients and their children: factors associated with family functioning. J Clin Oncol. 2008;26(36):5877–5883.
    1. Compas BE, Worsham NL, Epping-Jordan JE, et al. When mom or dad has cancer: markers of psychological distress in cancer patients, spouses, and children. Health Psychol. 1994;13(6):507–515.
    1. Goodman A, Gatward R. Who are we missing? Area deprivation and survey participation. Eur J Epidemiol. 2008;23(6):379–387.
    1. Nord C, Mykletun A, Fosså SD. Cancer patients’ awareness about their diagnosis: a population-based study. J Public Health Med. 2003;25(4):313–317.
    1. Nord-Trøndelag Health Study (HUNT) Response rates in HUNT. Trondheim: HUNT, Norwegian University of Science and Technology; [Accessed April 3, 2011]. [updated 2010]. [Norwegian]. Available from: .
    1. PRBorg [homepage on the Internet] Washington, DC: Population Reference Bureau; [Accessed July 3, 2011]. [updated 2010]. Available from:
    1. Lovdata. Norwegian law re. health workers. Oslo: Lovdata, Norwegian laws; [Accessed August 8, 2011]. [updated 2010]. [Norwegian]. Available from: .
    1. Norwegian Directorate of Health. Rundskriv IS-5/2010: Barn som pårørende [Children as significant others] Norwegian Department of Health; [Accessed September 7, 2011]. [updated 2010]. [Norwegian]. Available from: .
    1. Norwegian Department of Health. Ot.prp. nr.85 2008, 2009 Re. changes in the law re. health practitioners: follow-up of children as significant others. Oslo: Lovdata, Norwegian Laws; [Accessed August 9, 2011]. [updated 2010]
    1. Clark W. Delayed transitions of young adults. Statistics Canada [serial on the Internet] Sep, 2007. [Accessed August 5, 2011]. pp. 13–21. [updated 2008]; Available from: .
    1. Raveis VH, Pretter S. Existential plight of adult daughters following their mother’s breast cancer diagnosis. Psychooncology. 2005;14(1):49–60.
    1. Lackey NR, Gates MF. Adults’ recollections of their experiences as young caregivers of family members with chronic physical illnesses. J Adv Nurs. 2001;34(3):320–328.
    1. Gates MF, Lackey NR. Youngsters caring for adults with cancer. Image J Nurs Sch. 1998;30(1):11–15.

Source: PubMed

赞助者和合作者

医疗条件

药物干预

3
订阅