Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Multicenter Study
. 2013 Jun;167(6):537-43.
doi: 10.1001/jamapediatrics.2013.628.

Psychological distress in parents of children with advanced cancer

Abby R Rosenberg  1 , Veronica Dussel, Tammy Kang, J Russel Geyer, Cynthia A Gerhardt, Chris Feudtner, Joanne Wolfe
Affiliations
Multicenter Study

Psychological distress in parents of children with advanced cancer

Abby R Rosenberg et al. JAMA Pediatr. 2013 Jun.

Abstract

Importance: Parent psychological distress can impact the well-being of childhood cancer patients and other children in the home. Recognizing and alleviating factors of parent distress may improve overall family survivorship experiences following childhood cancer.

Objectives: To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer.

Design: Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study).

Setting: Multicenter study conducted at 3 children's hospitals (Boston Children's Hospital, Children's Hospital of Philadelphia, and Seattle Children's Hospital).

Participants: Parents of children with advanced (progressive, recurrent, or refractory) cancer.

Main outcome measure: Parental PD, as measured by the Kessler-6 Psychological Distress Scale.

Results: Eighty-six of 104 parents completed the Survey About Caring for Children With Cancer (83% participation); 81 parents had complete Kessler-6 Psychological Distress Scale data. More than 50% of parents reported high PD and 16% met criteria for serious PD (compared with US prevalence of 2%-3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent Kessler-6 Psychological Distress Scale scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care.

Conclusions and relevance: Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals and easing child suffering and financial hardship may mitigate parental PD.

PubMed Disclaimer

Conflict of interest statement

AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author(s) indicated no potential conflict of interests.

Figures

Figure 1
Figure 1. Parent Kessler-6 scores stratified by “the degree to which child’s health affects distress.”
Distribution of parental distress scores as defined by the Kessler-6 (K6) scale among the 79 parents with complete K6 data who also answered the question: “During the last 30 days, to what extent has your child’s health contributed to these feelings?” with options “a great deal,” “a lot,” “somewhat,” “a little,” or “not at all” (p<0.001 based on Kruskal-Wallis test).
Figure 2
Figure 2. Parent Kessler-6 scores associated with perceptions of cure likelihood and corresponding goals of therapy
Distribution of parents’ treatment goals according to their understanding of prognosis of their child, with their corresponding mean K6 scores (SD) are presented. a Goals that were concrete and aligned with prognostic understanding. Parents who reported concrete and aligned treatment goals reported lower K6 scores, i.e. less distress, than parents who reported other treatment goals. †: 2 of 33 parents in “likely” or “very likely” group did not report overall goal of medical care. ‡: SD could not be estimated.
See this image and copyright information in PMC

References

    1. Grootenhuis MA, Last BF. Adjustment and coping by parents of children with cancer: a review of the literature. Support Care Cancer. 1997 Nov;5(6):466–484. - PubMed
    1. Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O’Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Support Care Cancer. 2007 Jul;15(7):807–818. - PubMed
    1. Perrin EC, Ayoub CC, Willett JB. In the eyes of the beholder: family and maternal influences on perceptions of adjustment of children with a chronic illness. J Dev Behav Pediatr. 1993 Apr;14(2):94–105. - PubMed
    1. Phipps S, Mulhern RK. Family cohesion and expressiveness promote resilience to the stress of pediatric bone marrow transplant: a preliminary report. J Dev Behav Pediatr. 1995 Aug;16(4):257–263. - PubMed
    1. Fuemmeler BF, B R, Williams L, et al. Adjustment of children with cancer and their caregivers: moderating influences of family functioning. Family Systems and Health. 2003;21(3):13.

Publication types