0
We're unable to sign you in at this time. Please try again in a few minutes.
Retry
We were able to sign you in, but your subscription(s) could not be found. Please try again in a few minutes.
Retry
There may be a problem with your account. Please contact the AMA Service Center to resolve this issue.
Contact the AMA Service Center:
Telephone: 1 (800) 262-2350 or 1 (312) 670-7827  *   Email: subscriptions@jamanetwork.com
Error Message ......
Article |

Psychological Distress in Parents of Children With Advanced Cancer FREE

Abby R. Rosenberg, MD, MS; Veronica Dussel, MD, MPH; Tammy Kang, MD; J. Russel Geyer, MD; Cynthia A. Gerhardt, PhD; Chris Feudtner, MD, PhD, MPH; Joanne Wolfe, MD, MPH
[+] Author Affiliations

Author Affiliations: Division of Pediatric Hematology/Oncology, Seattle Children's Hospital (Drs Rosenberg and Geyer), Fred Hutchinson Cancer Research Center (Drs Rosenberg and Geyer), and University of Washington (Drs Rosenberg and Geyer), Seattle; Department of Psychosocial Oncology and Palliative Care (Drs Dussel and Wolfe) and Center for Outcomes and Policy Research (Dr Wolfe), Dana-Farber Cancer Institute, Harvard Medical School (Dr Wolfe), and Department of Medicine, Boston Children's Hospital (Dr Wolfe), Boston, Massachusetts; Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina (Dr Dussel); The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania (Drs Kang and Feudtner); and The Ohio State University (Dr Gerhardt) and The Research Institute at Nationwide Children's Hospital (Dr Gerhardt), Columbus.


JAMA Pediatr. 2013;167(6):537-543. doi:10.1001/jamapediatrics.2013.628.
Text Size: A A A
Published online

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.

Figures in this Article

Caring for a child with cancer can be profoundly distressing to parents,1,2 and in turn, parental psychological distress (PD) can affect child39 and sibling well-being.10,11 Caring for a child with advanced cancer is likely to be even more distressing, yet very few prospective studies have evaluated parent PD among these families. Not only do parents witness their child's protracted physical and emotional suffering,1214 they also must contend with the ultimate threat to their child's life,15 which is heightened among children with more advanced stages of disease. Prolonged changes in employment and financial challenges1,2,12,13,16,17 may also exacerbate parental PD.

We have previously reviewed the psychosocial morbidities of bereaved parents of children with cancer18; however, only 2 studies have been conducted among parents of children with advanced or progressive cancer.19,20 One study assessed parent emotional adjustment19 and the other, global levels of parent health during the end-of-life period.20 Neither study used standardized instruments nor did they report on factors contributing to PD, such as degree of prognosis acceptance, goals of therapy, child suffering, or financial hardship.

Understanding the degree of PD and contributing factors among parents with children with advanced cancer has the potential to better enable clinicians to identify higher-risk families and optimize outcomes. In addition, better insight may enable the design and implementation of parental supportive interventions. Accordingly, in this report, we describe the prevalence of PD among parents of children with advanced cancer and explore whether parental PD is associated with known “medical,” “child,” and “parent” factors, including parent perceptions about the child's experience.

Data were collected within the context of the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, a pilot randomized trial of a supportive care intervention in children with advanced cancer. The primary goal of the PediQUEST study was to assess the PediQUEST system, a software that allows electronic collection of patient-reported outcomes and generation of feedback reports for providers and families. After their parents provided informed consent, consecutive children were enrolled if they were at least 2 years of age; they had at least a 2-week history of progressive, recurrent, or nonresponsive cancer; they received cancer care at 1 of the 3 participating sites (Dana-Farber Children's Hospital Cancer Center, Children's Hospital of Philadelphia, or Seattle Children's Hospital); and their parents or legal guardians had written command of English and were able to understand and complete self-administered surveys. As part of the study, we also surveyed parents or legal guardians of patients at the time of enrollment to assess their views on their child's illness. Parents were mailed or handed the Survey About Caring for Children With Cancer (SCCC) along with a self-addressed, stamped return envelope and a $5 coffee-card incentive. Two biweekly reminders were done (by telephone or face to face if the patient came to the clinic) for parents who did not respond. Families selected 1 parent per enrolled child to complete the survey. One hundred four children were enrolled from December 2004 to June 2009.

STUDY INSTRUMENT

The SCCC was previously developed by our team based on expert interviews and parent focus groups.21 This comprehensive paper-and-pencil, self-administered survey evaluates parents' perceptions about the child's illness (current treatment, prognosis, treatment goals, and suffering from treatment or the illness) and financial impact of the illness. In addition, the SCCC includes validated measures of PD and social support and collects parent-reported sociodemographic information. Child's age, sex, diagnosis, and dates of disease progression were abstracted from the medical records.

MAIN DEPENDENT VARIABLE

Parent PD was the main dependent variable and was measured by the Kessler-6 Psychological Distress Scale (K6).22 This 6-item screening tool was developed for the US National Health Interview Survey and is used by the World Health Organization World Mental Health Survey Initiative to assess population-level mental health. The K6 was selected for this study because it is relatively quick and has been widely validated showing high discriminative properties, including among parents of ill children.22,23 The instrument asks: “During the past 30 days, how often did you feel (a) nervous? (b) hopeless? (c) restless or fidgety? (d) so depressed that nothing could cheer you up? (e) that everything was an effort? (f) worthless?” Possible responses are “none of the time,” “a little of the time,” “some of the time,” “most of the time,” and “all of the time.” Responses are scored on a 5-point Likert scale and summed to generate a total symptom score between 0 and 24; scores of 7 or more are indicative of high PD and scores of 13 or greater meet the criteria of serious psychological distress (SPD).24 In the United States, mean K6 scores are approximately 2.5 for well adults.25 Serious, debilitating PD is rare, with an estimated prevalence of 2% to 3% among well adults26 and higher prevalence among adults with chronic or life-threatening illness.27 Parental PD is reported as mean K6 scores and proportion of parents with SPD.

INDEPENDENT VARIABLES
Child and Medical Factors

Child-related variables included the child's sex, age, cancer type, current or ongoing receipt of cancer-directed therapy, time from first disease progression to survey date, and child suffering during past month due to symptoms and treatment. Child age was stratified into 3 groups: preschool aged (ages 2-6 years), school aged (ages 7-12 years), and adolescent (≥13 years). Whether the child was receiving cancer-directed therapy at the time of PediQUEST enrollment was reported by parents on the SCCC. All other variables were abstracted from the medical record.

Parent Factors

All parent factors were obtained from the SCCC. Sociodemographic variables included parents' sex, age, race/ethnicity, marital status, level of education, annual income, and social support. Parent age and social support scores were dichotomized at the 25th percentile because we postulated a priori that younger or less supported parents would have greater distress. Social support was assessed using an adapted, 9-item, validated version of the social support subscale of the Medical Outcomes Study, which measures self-reported available support.28 Medical Outcomes Study social support subscale raw scores (ie, simple algebraic sums) were transformed into a 0- to 100-point scale; the higher the score, the better the perception of social support. Parents were also asked to share: (1) their understanding of their child's current prognosis, (2) primary goal pursued by providing the current medical therapy to their child, (3) degree of child suffering, and (4) degree of family economic hardship due to their child's cancer. Responses were elicited using 4- and 5-point Likert-type scales and then collapsed for analysis as delineated in the text and tables. Parent perception of prognosis was collapsed into 2 categories: likely to be cured (cure likely/very likely) and unlikely to be cured (unlikely/very unlikely).

Primary goal of current medical treatment held 5 response options (to cure, to keep hoping, to make sure everything has been done, to extend life without hope of cure, and to lessen suffering) developed and validated through qualitative research and used in prior studies.21 Parents were asked to select only 1 goal. Prognostic understanding was considered aligned with a concrete goal if parents reported the child was likely to be cured and endorsed the goal of cure or if parents reported the child was unlikely to be cured and endorsed the goal of extending life or lessening suffering.

STATISTICAL METHODS

Analyses were performed using Stata statistical software version 10.1 (StataCorp). A complete case analysis was performed; missing data were not imputed. Frequencies and means were used to characterize parent, medical, and child variables. To evaluate the association of parental PD and child and parent factors, we ran univariate linear and logistic regression analyses where PD was modeled both as a continuous (increase in mean K6 scores) and dichotomous (likelihood of presenting with SPD) outcome. We ran exploratory multivariate analysis to analyze the independent effect of each of these factors. Variables with a P value <.10 in the univariate analyses were added in a forward, stepwise fashion into multiple linear regression models.

Seventy-one percent of eligible, approached families enrolled in the PediQUEST study. Of the 104 enrolled families, 86 parents (83%) returned the SCCC. This analysis reports on the 81 parents (78% of the total sample) with complete K6 data. Child's age, type of cancer, and duration of progressive disease were comparable among SCCC respondents, nonrespondents, and respondents with complete and incomplete K6 data.

The mean (SD) parental PD (K6) score was 7.9 (4.4) and 50% of parents had a score of 8 or higher (interquartile range, 5-11). Thirteen parents (16%; 95% CI, 8%-24%) met criteria for serious PD. Fifty-five parents (69%) reported that they felt more distressed than usual, 14 (18%) said they were as distressed as usual, and 10 (13%) reported less distress than usual. Seventy parents (89%) reported that their child's health contributed “a lot or a great deal” to their distress and these parents tended to have higher K6 scores than parents who reported their child's health contributed less to their distress (Figure 1).

Place holder to copy figure label and caption
Graphic Jump Location

Figure 1. Parent Kessler-6 Psychological Distress Scale (K6) scores stratified by the degree to which child's health affects distress. Distribution of parental distress scores as defined by the K6 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 < .001 based on Kruskal-Wallis test).

At the time of enrollment, most children were receiving cancer-directed therapy and 85% had been diagnosed with progressive disease for at least 2 months (Table 1). The median duration of progressive disease was 195 days (interquartile range, 86-353 days). Only 3 children (4%) died within 3 months of enrollment. Respondents were predominantly white women who were older than 38 years of age and married. Parents reported high levels of social support (standardized median score, 83%). No child or parental demographic factors were associated with mean K6 scores or risk of parent SPD at the .05 level.

Table Graphic Jump LocationTable 1. Main Child and Parent Characteristics and Mean Parental K6 Scores

Forty-seven percent of parents believed that cure for their child was likely (Figure 2) and the vast majority of these parents endorsed the concrete primary goal of cure (90%). Among the 53% of parents who reported cure was unlikely for their child, 30% endorsed the concrete primary goals to “extend life without hope of cure” (27%) or “lessen suffering” (3%). Parents who believed their child to be curable had lower distress scores (Table 2) and parents whose prognostic understanding was aligned with concrete primary goals also had lower distress scores as well as a lower likelihood of SPD. Further, parents who believed their child benefited from current cancer-directed therapy tended to have lower distress and those who felt their child was suffering from therapy had greater distress. While somatic symptom–related suffering was not related to parental distress, child emotional suffering was. For example, parents who believed their child was sad or anxious had higher distress scores and higher risks of SPD, whereas those who believed their child suffered from pain did not report consistently elevated distress. Parents who perceived that their child was suffering “a lot” overall, however, tended to have higher average distress scores and a higher likelihood of SPD.

Place holder to copy figure label and caption
Graphic Jump Location

Figure 2. Parent Kessler-6 Psychological Distress Scale (K6) 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 (SD) K6 scores are presented. *Goals that were concrete and aligned with prognostic understanding. Parents who reported concrete and aligned treatment goals reported lower K6 scores, ie, less distress, than parents who reported other treatment goals. †Two of 33 parents in “likely” or “very likely” group did not report overall goal of medical care. ‡Standard deviation could not be estimated.

Table Graphic Jump LocationTable 2. Parent Perceptions of Child's Illness Associated With PD and SPD,a Univariate Analysis

Twenty-four families (30%) perceived “great” economic hardship due to their child's cancer and this perception was associated with increased average K6 scores and increased risk of SPD. These trends remained when analyses were adjusted by annual income category.

In multivariate models, average parent K6 scores were 4 points lower among parents whose prognostic understanding was aligned with concrete goals of care, independent of suffering or financial hardship (Table 3). Conversely, distress was 3 or more points higher among those who believed their child was suffering highly and who reported great economic hardship. Sensitivity analyses that included adjustments for study site, parent sex, child's age, and the use of 3 categories of alignment of prognostic understanding with concrete goals (cure likely with goal of cure, cure unlikely with palliative goals, and cure unlikely with nonpalliative goals) did not significantly affect these results.

Table Graphic Jump LocationTable 3. Parent Perceptions of Child's Illness Associated with Increasing Psychological Distress, Multivariate Analysisa

Screening for PD is a critical element of comprehensive, psychosocial care of patients with cancer and their families.29 Prior studies have suggested that such screening may improve communication between patients and clinicians and may ultimately improve patient well-being.30 We sought to evaluate PD among parents of children with advanced cancer and found the experience of PD to be highly prevalent. More than half of parents report high levels of PD and approximately 1 in 7 experience SPD. In comparison, parents of children with progressive cancer are 4 times more likely to develop SPD than parents of well children31 and more than 2 times more likely to develop SPD than adults with cancer or other serious medical conditions.27,32 These findings imply that parenting a child with progressive cancer can profoundly affect mental health.

High PD, as determined by the K6 screen, is highly predictive of serious mental illness (area under the curve, 0.87).22 Adults with high PD have increased risks of poor health outcomes,33 workplace productivity loss,34 and mortality.35 In addition, PD among parents of well children has been associated with lower attainment of child developmental milestones.36 Among children with cancer, parent PD can ultimately affect patient39 and sibling10,11 psychosocial outcomes. Alleviating parent PD may lead to more optimal patient and family health.

Our findings confirm that parental PD is associated with perception of cure likelihood. In this study of patients with advanced cancer, we found strikingly wide variability in the duration of progressive disease duration. However, nearly half of parents still believed cure was likely for their child, and those who did also had lower distress scores.

Our results also demonstrate that goals of therapy further define PD and that the relationship between these goals and prognostic understanding is key. For example, we found that when prognostic understanding is aligned with concrete treatment goals parents experience lower levels of distress, even if parents understand the child's illness to be incurable. These findings are akin to theories of cognitive dissonance, which explain the psychological effects of conflicting beliefs and behaviors (ie, understanding of prognosis and goals of therapy).37 Studies have shown that the dissonant state may be resolved by changing individual beliefs; however, cognitive dissonance may have lasting, psychologically detrimental effects if the inconsistencies endure.38 Because a cancer diagnosis represents the potential death of a child and challenges a parent's basic assumptions, the level of cognitive dissonance, and consequent PD, may be greater in this population.39 These results support the notion that early integration of palliative care strategies as a means of facilitating the alignment of parents' prognostic understanding with concrete goals of care may ease their distress.

Parent perception of child suffering was also related to their experience of PD. Perceived child psychological, but not somatic, symptoms were associated with parental distress, regardless of perceived prognosis. Parents may have greater emotional struggles when they feel that their child is unhappy or afraid. They may feel less knowledgeable or more helpless in the face of their child's emotional symptoms than they would with other cancer-related somatic complaints and may feel more responsible for addressing psychological concerns. Likewise, a child's emotional suffering may more strongly impair parental coping. Family functioning and parenting styles also may relate to the development of parent distress. Others have described a relationship between child emotional distress and parent distress40 but have been challenged to determine causality.41 Indeed, parents with their own histories of PD may be more likely to report child psychological symptoms. The nature of our study design precludes inference regarding the direction of any influential relationship between parent mental health and child suffering.

Our findings suggest that younger parents, or those of younger children, tend to have higher levels of PD. This may reflect lower levels of maturity or fewer economic and social resources. Unlike prior studies, however, we did not find a relationship between income and parent distress. Rather, perceived financial hardship was an important factor of parent distress. We have previously described financial hardship among parents of children with cancer and have shown that poor families have greater hardship.17 The present findings suggest that families who perceive economic stressors are more likely to be psychologically distressed, regardless of their baseline financial resources.

The study has several limitations. First, while our data were collected during the child's illness and not retrospectively, they are not longitudinal. We cannot infer trends in parental distress over time nor can we estimate potential causality in the described associations. For example, there may be a process of adjustment where parents first understand their child has no likely chance for cure and later realign their goals; however, we found no association between duration of progressive disease and PD. Second, since we do not report concurrent child-reported distress or physician opinions of prognosis, we cannot validate parent-reported child experience or perspectives of cure likelihood. Future studies should focus on concordance of perceptions among patients, parents, and physicians and how this relates to parent PD.

In addition, while we had a comparatively large sample in relation to other studies conducted among parents, the absolute number of subjects was not large, and so, even moderate relationships could not be assessed reliably. For example, despite notable trends, we could not confirm with confidence that child or parent age or parent sex was associated with parent PD. Though our study is multi-institutional, the characteristics of our sample are somewhat narrowly distributed to white women with annual incomes above the poverty level and mainly represent families cared for at large tertiary-level cancer centers, and so, our findings may not be generalizable to families of varying backgrounds cared for in other settings. Finally, the K6 instrument is an excellent screening tool that has been used in parents of other ill children; however, the depth of information regarding PD is limited. To gain a better understanding about parental PD and even about the use of K6 as a screening tool in this population, a study using more specific PD tools would provide valuable data.

This is one of the first studies to describe the experience of distress in parents of children with advanced cancer. Distress levels in this population are high and are associated with parent experiences during their child's cancer care. Importantly, our findings suggest ways in which providers may ease parental PD by exploring their views on prognosis and treatment goals, perceived child suffering, and economic hardship. Future research should focus on family interventions aimed at easing distress among parents of children with advanced cancer.

Correspondence: Joanne Wolfe, MD, MPH, Center for Outcomes and Policy Research and Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215 (joanne_wolfe@dfci.harvard.edu).

Accepted for Publication: August 28, 2012.

Published Online: April 1, 2013. doi:10.1001/jamapediatrics.2013.628

Author Contributions:Study concept and design: Rosenberg, Dussel, Kang, Feudtner, and Wolfe. Acquisition of data: Dussel, Kang, and Feudtner. Analysis and interpretation of data: Rosenberg, Dussel, Geyer, Gerhardt, Feudtner, and Wolfe. Drafting of the manuscript: Rosenberg and Dussel. Critical revision of the manuscript for important intellectual content: Rosenberg, Dussel, Kang, Geyer, Gerhardt, Feudtner, and Wolfe. Statistical analysis: Rosenberg and Dussel. Obtained funding: Wolfe. Administrative, technical, and material support: Kang, Gerhardt, and Feudtner. Study supervision: Dussel, Kang, Geyer, and Wolfe.

Conflict of Interest Disclosures: None reported.

Funding/Support: This project was part of the PediQUEST study and funded by National Institutes of Health/National Cancer Institute grant 1K07 CA096746-01, a Charles H. Hood Foundation Child Health Research Award, and an American Cancer Society Pilot and Exploratory Project Award in Palliative Care of Cancer Patients and Their Families. Dr Rosenberg was supported by Ruth L. Kirschstein National Research Service Award T32CA009351.

Additional Contributions: We thank the families for their willingness to participate in the study and Sarah H. Aldridge, CPNP-AC, CPHON, Lindsay Teittinen, ARNP, Janis Rice, MPH, Karen Carroll, BS, and Karina Bloom, BS, for work on enrollment and data collection. We thank Noel Weiss, MD, DrPH, for thoughtful reviews and perspectives of our analyses and findings.

Grootenhuis MA, Last BF. Adjustment and coping by parents of children with cancer: a review of the literature.  Support Care Cancer. 1997;5(6):466-484
PubMed   |  Link to Article
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;15(7):807-818
PubMed   |  Link to Article
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;14(2):94-105
PubMed   |  Link to Article
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;16(4):257-263
PubMed   |  Link to Article
Fuemmeler BF, Brown RT, Williams L, Barredo J. Adjustment of children with cancer and their caregivers: moderating influences of family functioning.  Fam Syst Health. 2003;21(3):263-276Link to Article
Link to Article
Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children.  J Pediatr Psychol. 1997;22(6):843-859
PubMed   |  Link to Article
Robinson KE, Gerhardt CA, Vannatta K, Noll RB. Parent and family factors associated with child adjustment to pediatric cancer.  J Pediatr Psychol. 2007;32(4):400-410
PubMed   |  Link to Article
Kazak AE, Alderfer M, Rourke MT, Simms S, Streisand R, Grossman JR. Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors.  J Pediatr Psychol. 2004;29(3):211-219
PubMed   |  Link to Article
Phipps S, Long A, Hudson M, Rai SN. Symptoms of post-traumatic stress in children with cancer and their parents: effects of informant and time from diagnosis.  Pediatr Blood Cancer. 2005;45(7):952-959
PubMed   |  Link to Article
Patterson JM, Holm KE, Gurney JG. The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors.  Psychooncology. 2004;13(6):390-407
PubMed   |  Link to Article
Packman W, Weber S, Wallace J, Bugescu N. Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review.  Bone Marrow Transplant. 2010;45(7):1134-1146
PubMed   |  Link to Article
Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ. Parental adjustment to the completion of their child's cancer treatment.  Pediatr Blood Cancer. 2011;56(4):524-531
PubMed   |  Link to Article
Vrijmoet-Wiersma CM, van Klink JM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: a review.  J Pediatr Psychol. 2008;33(7):694-706
PubMed   |  Link to Article
Wolfe J, Grier HE, Klar N,  et al.  Symptoms and suffering at the end of life in children with cancer.  N Engl J Med. 2000;342(5):326-333
PubMed   |  Link to Article
Valdimarsdóttir U, Kreicbergs U, Hauksdóttir A,  et al.  Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study.  Lancet Oncol. 2007;8(8):706-714
PubMed   |  Link to Article
Maurice-Stam H, Oort FJ, Last BF, Grootenhuis MA. Emotional functioning of parents of children with cancer: the first five years of continuous remission after the end of treatment.  Psychooncology. 2008;17(5):448-459
PubMed   |  Link to Article
Dussel V, Bona K, Heath JA, Hilden JM, Weeks JC, Wolfe J. Unmeasured costs of a child's death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer.  J Clin Oncol. 2011;29(8):1007-1013
PubMed   |  Link to Article
Rosenberg AR, Baker KS, Syrjala K, Wolfe J. Systematic review of psychosocial morbidities among bereaved parents of children with cancer.  Pediatr Blood Cancer. 2012;58(4):503-512
PubMed   |  Link to Article
Grootenhuis MA, Last BF. Predictors of parental emotional adjustment to childhood cancer.  Psychooncology. 1997;6(2):115-128
PubMed   |  Link to Article
Birenbaum LK, Stewart BJ, Phillips DS. Health status of bereaved parents.  Nurs Res. 1996;45(2):105-109
PubMed   |  Link to Article
Wolfe J, Klar N, Grier HE,  et al.  Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care.  JAMA. 2000;284(19):2469-2475
PubMed   |  Link to Article
Kessler RC, Andrews G, Colpe LJ,  et al.  Short screening scales to monitor population prevalences and trends in non-specific psychological distress.  Psychol Med. 2002;32(6):959-976
PubMed   |  Link to Article
Furukawa TA, Kessler RC, Slade T, Andrews G. The performance of the K6 and K10 screening scales for psychological distress in the Australian National Survey of Mental Health and Well-Being.  Psychol Med. 2003;33(2):357-362
PubMed   |  Link to Article
Kessler RC, Barker PR, Colpe LJ,  et al.  Screening for serious mental illness in the general population.  Arch Gen Psychiatry. 2003;60(2):184-189
PubMed   |  Link to Article
Bratter JL, Eschbach K. Race/Ethnic Differences in Non-Specific Psychological Distress: Non-specific findings from the National Health Interview Survey.  Soc Sci Q. 2005;86(3):620-644http://www.echt.chm.msu.edu/blockiii/Docs/RecRead /RaceEthnicDiff.pdf
Link to Article
Ward BW, Barnes PM, Freeman G, Schiller JS. Early release of selected estimates based on data from the 2010 National Health Interview Survey. http://www.cdc.gov/nchs/nhis.htm. Published June 2011. Accessed May 21, 2012. Pages 91-95
Kaiser NC, Hartoonian N, Owen JE. Toward a cancer-specific model of psychological distress: population data from the 2003-2005 National Health Interview Surveys.  J Cancer Surviv. 2010;4(4):291-302
PubMed   |  Link to Article
Sherbourne CD, Stewart AL. The MOS social support survey.  Soc Sci Med. 1991;32(6):705-714
PubMed   |  Link to Article
Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations.  J Clin Oncol. 2012;30(11):1160-1177
PubMed   |  Link to Article
Velikova G, Booth L, Smith AB,  et al.  Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial.  J Clin Oncol. 2004;22(4):714-724
PubMed   |  Link to Article
Martin J, Hiscock H, Hardy P, Davey B, Wake M. Adverse associations of infant and child sleep problems and parent health: an Australian population study.  Pediatrics. 2007;119(5):947-955
PubMed   |  Link to Article
Li CFE, Ford ES, Zhao G,  et al.  Association between diagnosed diabetes and serious psychological distress among U.S. adults: the Behavioral Risk Factor Surveillance System, 2007.  Int J Public Health. 2009;54:(suppl 1)  43-51
PubMed   |  Link to Article
Fortin M, Bravo G, Hudon C, Lapointe L, Dubois MF, Almirall J. Psychological distress and multimorbidity in primary care.  Ann Fam Med. 2006;4(5):417-422
PubMed   |  Link to Article
Stansfeld S, Feeney A, Head J, Canner R, North F, Marmot M. Sickness absence for psychiatric illness: the Whitehall II Study.  Soc Sci Med. 1995;40(2):189-197
PubMed   |  Link to Article
Robinson KL, McBeth J, Macfarlane GJ. Psychological distress and premature mortality in the general population: a prospective study.  Ann Epidemiol. 2004;14(7):467-472
PubMed   |  Link to Article
Mensah FK, Kiernan KE. Parents' mental health and children's cognitive and social development: families in England in the Millennium Cohort Study.  Soc Psychiatry Psychiatr Epidemiol. 2010;45(11):1023-1035
PubMed   |  Link to Article
Festinger L. A Theory of Cognitive Dissonance. Stanford, CA: Stanford University Press; 1957
Draycott S, Dabbs A. Cognitive dissonance, 1: an overview of the literature and its integration into theory and practice in clinical psychology.  Br J Clin Psychol. 1998;37(pt 3):341-353
PubMed   |  Link to Article
Danforth MM, Glass JC Jr. Listen to my words, give meaning to my sorrow: a study in cognitive constructs in middle-age bereaved widows.  Death Stud. 2001;25(6):513-548
PubMed   |  Link to Article
Jalmsell L, Kreicbergs U, Onelöv E, Steineck G, Henter JI. Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents.  Pediatr Blood Cancer. 2010;54(5):751-757
PubMed
Phipps S, Noll RB. Do symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents?  Pediatr Blood Cancer. 2010;55(6):1245
PubMed   |  Link to Article

Figures

Place holder to copy figure label and caption
Graphic Jump Location

Figure 1. Parent Kessler-6 Psychological Distress Scale (K6) scores stratified by the degree to which child's health affects distress. Distribution of parental distress scores as defined by the K6 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 < .001 based on Kruskal-Wallis test).

Place holder to copy figure label and caption
Graphic Jump Location

Figure 2. Parent Kessler-6 Psychological Distress Scale (K6) 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 (SD) K6 scores are presented. *Goals that were concrete and aligned with prognostic understanding. Parents who reported concrete and aligned treatment goals reported lower K6 scores, ie, less distress, than parents who reported other treatment goals. †Two of 33 parents in “likely” or “very likely” group did not report overall goal of medical care. ‡Standard deviation could not be estimated.

Tables

Table Graphic Jump LocationTable 1. Main Child and Parent Characteristics and Mean Parental K6 Scores
Table Graphic Jump LocationTable 2. Parent Perceptions of Child's Illness Associated With PD and SPD,a Univariate Analysis
Table Graphic Jump LocationTable 3. Parent Perceptions of Child's Illness Associated with Increasing Psychological Distress, Multivariate Analysisa

References

Grootenhuis MA, Last BF. Adjustment and coping by parents of children with cancer: a review of the literature.  Support Care Cancer. 1997;5(6):466-484
PubMed   |  Link to Article
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;15(7):807-818
PubMed   |  Link to Article
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;14(2):94-105
PubMed   |  Link to Article
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;16(4):257-263
PubMed   |  Link to Article
Fuemmeler BF, Brown RT, Williams L, Barredo J. Adjustment of children with cancer and their caregivers: moderating influences of family functioning.  Fam Syst Health. 2003;21(3):263-276Link to Article
Link to Article
Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children.  J Pediatr Psychol. 1997;22(6):843-859
PubMed   |  Link to Article
Robinson KE, Gerhardt CA, Vannatta K, Noll RB. Parent and family factors associated with child adjustment to pediatric cancer.  J Pediatr Psychol. 2007;32(4):400-410
PubMed   |  Link to Article
Kazak AE, Alderfer M, Rourke MT, Simms S, Streisand R, Grossman JR. Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors.  J Pediatr Psychol. 2004;29(3):211-219
PubMed   |  Link to Article
Phipps S, Long A, Hudson M, Rai SN. Symptoms of post-traumatic stress in children with cancer and their parents: effects of informant and time from diagnosis.  Pediatr Blood Cancer. 2005;45(7):952-959
PubMed   |  Link to Article
Patterson JM, Holm KE, Gurney JG. The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors.  Psychooncology. 2004;13(6):390-407
PubMed   |  Link to Article
Packman W, Weber S, Wallace J, Bugescu N. Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review.  Bone Marrow Transplant. 2010;45(7):1134-1146
PubMed   |  Link to Article
Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ. Parental adjustment to the completion of their child's cancer treatment.  Pediatr Blood Cancer. 2011;56(4):524-531
PubMed   |  Link to Article
Vrijmoet-Wiersma CM, van Klink JM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: a review.  J Pediatr Psychol. 2008;33(7):694-706
PubMed   |  Link to Article
Wolfe J, Grier HE, Klar N,  et al.  Symptoms and suffering at the end of life in children with cancer.  N Engl J Med. 2000;342(5):326-333
PubMed   |  Link to Article
Valdimarsdóttir U, Kreicbergs U, Hauksdóttir A,  et al.  Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study.  Lancet Oncol. 2007;8(8):706-714
PubMed   |  Link to Article
Maurice-Stam H, Oort FJ, Last BF, Grootenhuis MA. Emotional functioning of parents of children with cancer: the first five years of continuous remission after the end of treatment.  Psychooncology. 2008;17(5):448-459
PubMed   |  Link to Article
Dussel V, Bona K, Heath JA, Hilden JM, Weeks JC, Wolfe J. Unmeasured costs of a child's death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer.  J Clin Oncol. 2011;29(8):1007-1013
PubMed   |  Link to Article
Rosenberg AR, Baker KS, Syrjala K, Wolfe J. Systematic review of psychosocial morbidities among bereaved parents of children with cancer.  Pediatr Blood Cancer. 2012;58(4):503-512
PubMed   |  Link to Article
Grootenhuis MA, Last BF. Predictors of parental emotional adjustment to childhood cancer.  Psychooncology. 1997;6(2):115-128
PubMed   |  Link to Article
Birenbaum LK, Stewart BJ, Phillips DS. Health status of bereaved parents.  Nurs Res. 1996;45(2):105-109
PubMed   |  Link to Article
Wolfe J, Klar N, Grier HE,  et al.  Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care.  JAMA. 2000;284(19):2469-2475
PubMed   |  Link to Article
Kessler RC, Andrews G, Colpe LJ,  et al.  Short screening scales to monitor population prevalences and trends in non-specific psychological distress.  Psychol Med. 2002;32(6):959-976
PubMed   |  Link to Article
Furukawa TA, Kessler RC, Slade T, Andrews G. The performance of the K6 and K10 screening scales for psychological distress in the Australian National Survey of Mental Health and Well-Being.  Psychol Med. 2003;33(2):357-362
PubMed   |  Link to Article
Kessler RC, Barker PR, Colpe LJ,  et al.  Screening for serious mental illness in the general population.  Arch Gen Psychiatry. 2003;60(2):184-189
PubMed   |  Link to Article
Bratter JL, Eschbach K. Race/Ethnic Differences in Non-Specific Psychological Distress: Non-specific findings from the National Health Interview Survey.  Soc Sci Q. 2005;86(3):620-644http://www.echt.chm.msu.edu/blockiii/Docs/RecRead /RaceEthnicDiff.pdf
Link to Article
Ward BW, Barnes PM, Freeman G, Schiller JS. Early release of selected estimates based on data from the 2010 National Health Interview Survey. http://www.cdc.gov/nchs/nhis.htm. Published June 2011. Accessed May 21, 2012. Pages 91-95
Kaiser NC, Hartoonian N, Owen JE. Toward a cancer-specific model of psychological distress: population data from the 2003-2005 National Health Interview Surveys.  J Cancer Surviv. 2010;4(4):291-302
PubMed   |  Link to Article
Sherbourne CD, Stewart AL. The MOS social support survey.  Soc Sci Med. 1991;32(6):705-714
PubMed   |  Link to Article
Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations.  J Clin Oncol. 2012;30(11):1160-1177
PubMed   |  Link to Article
Velikova G, Booth L, Smith AB,  et al.  Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial.  J Clin Oncol. 2004;22(4):714-724
PubMed   |  Link to Article
Martin J, Hiscock H, Hardy P, Davey B, Wake M. Adverse associations of infant and child sleep problems and parent health: an Australian population study.  Pediatrics. 2007;119(5):947-955
PubMed   |  Link to Article
Li CFE, Ford ES, Zhao G,  et al.  Association between diagnosed diabetes and serious psychological distress among U.S. adults: the Behavioral Risk Factor Surveillance System, 2007.  Int J Public Health. 2009;54:(suppl 1)  43-51
PubMed   |  Link to Article
Fortin M, Bravo G, Hudon C, Lapointe L, Dubois MF, Almirall J. Psychological distress and multimorbidity in primary care.  Ann Fam Med. 2006;4(5):417-422
PubMed   |  Link to Article
Stansfeld S, Feeney A, Head J, Canner R, North F, Marmot M. Sickness absence for psychiatric illness: the Whitehall II Study.  Soc Sci Med. 1995;40(2):189-197
PubMed   |  Link to Article
Robinson KL, McBeth J, Macfarlane GJ. Psychological distress and premature mortality in the general population: a prospective study.  Ann Epidemiol. 2004;14(7):467-472
PubMed   |  Link to Article
Mensah FK, Kiernan KE. Parents' mental health and children's cognitive and social development: families in England in the Millennium Cohort Study.  Soc Psychiatry Psychiatr Epidemiol. 2010;45(11):1023-1035
PubMed   |  Link to Article
Festinger L. A Theory of Cognitive Dissonance. Stanford, CA: Stanford University Press; 1957
Draycott S, Dabbs A. Cognitive dissonance, 1: an overview of the literature and its integration into theory and practice in clinical psychology.  Br J Clin Psychol. 1998;37(pt 3):341-353
PubMed   |  Link to Article
Danforth MM, Glass JC Jr. Listen to my words, give meaning to my sorrow: a study in cognitive constructs in middle-age bereaved widows.  Death Stud. 2001;25(6):513-548
PubMed   |  Link to Article
Jalmsell L, Kreicbergs U, Onelöv E, Steineck G, Henter JI. Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents.  Pediatr Blood Cancer. 2010;54(5):751-757
PubMed
Phipps S, Noll RB. Do symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents?  Pediatr Blood Cancer. 2010;55(6):1245
PubMed   |  Link to Article

Correspondence

CME
Meets CME requirements for:
Browse CME for all U.S. States
Accreditation Information
The American Medical Association is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The AMA designates this journal-based CME activity for a maximum of 1 AMA PRA Category 1 CreditTM per course. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Physicians who complete the CME course and score at least 80% correct on the quiz are eligible for AMA PRA Category 1 CreditTM.
Note: You must get at least of the answers correct to pass this quiz.
You have not filled in all the answers to complete this quiz
The following questions were not answered:
Sorry, you have unsuccessfully completed this CME quiz with a score of
The following questions were not answered correctly:
Commitment to Change (optional):
Indicate what change(s) you will implement in your practice, if any, based on this CME course.
Your quiz results:
The filled radio buttons indicate your responses. The preferred responses are highlighted
For CME Course: A Proposed Model for Initial Assessment and Management of Acute Heart Failure Syndromes
Indicate what changes(s) you will implement in your practice, if any, based on this CME course.
Submit a Comment

Multimedia

Some tools below are only available to our subscribers or users with an online account.

Web of Science® Times Cited: 3

Related Content

Customize your page view by dragging & repositioning the boxes below.

Articles Related By Topic
Related Collections