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Keywords:

  • neoplasm;
  • parental cancer;
  • children;
  • psychosocial needs;
  • psychosocial use

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES

BACKGROUND

Cancer patients and their minor children have been shown to experience psychological distress. The objectives of the current study were to 1) describe the need for and use of psychosocial support and 2) determine predictors of family-centered support use in patients with minor children.

METHODS

A population-based sample of 1809 patients was recruited via 2 cancer registries. The eligibility criteria were age 25 years to 55 years, an initial diagnosis received no longer than 6 years before this survey, and having at least 1 minor child. Medical characteristics and self-report measures were used.

RESULTS

Overall, approximately 38% cases were identified as being borderline or probable anxiety cases and 16% were identified as being borderline or probable depression cases. Since diagnosis, 44% of the patients had used psychosocial support and 9% had received family-focused and child-focused support. These patients perceived a lower quality of life and poorer family functioning. Approximately 73% of patients with children wanted information concerning or psychosocial services to support their children or parenting. Use of family-centered support was not found to be predicted by disease-related factors (eg, cancer staging) but rather by subjective needs (eg, mental health and having a distressed child in the family).

CONCLUSIONS

The results of the current study emphasize the importance of child and parenting concerns in psychosocial care in oncology. Screenings for children and appropriate training programs for health care may increase awareness of this issue. Cancer 2013;119:2333–2341. © 2013 American Cancer Society.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES

The diagnosis and treatment of cancer have a considerable impact on a patient and can cause an increased level of distress[1] and a higher prevalence of depression and anxiety.[2] Furthermore, close relatives, such as the patient's partner and minor children, have an increased risk of experiencing higher levels of distress in response to the disease.[3] Although a minority of patients are at a greater risk of developing psychopathological morbidity,[4] even subclinical levels of distress can have a negative impact on the quality of life of members of the patient's nuclear family.[5]

Compared with the general population, patients with minor children experience increased levels of depression and anxiety.[6] The finding that 14% of all cancer survivors in the United States have minor children[7] indicates that a significant part of this population struggles with cumulative burdens related to a severe disease and additional parenting concerns, such as what and how to tell their children about their illness.[5]

Psychosocial interventions have been proven to be effective in reducing the distress of both patients and their relatives and increasing their quality of life.[8] However, although the availability of psychooncological support for the patient and his/her relatives is a goal of integrated cancer care and has been acknowledged in recent guidelines,[9] it is not available everywhere (eg, rural areas).[10] Moreover, to the best of our knowledge, little is known about the use of child-focused and parenting-focused interventions that include minor children.[11]

Children affected by a parental cancer diagnosis were found to have used psychiatric services more frequently than their peers during a 21-year follow-up cohort study.[12] The use of low-threshold support services with short waiting times and accessibility without a physician's referral, such as psychosocial counseling services, have to the best of our knowledge not been investigated to date and the need of children for these interventions might be even higher.

The likelihood of cancer survivors participating in family-centered and child-centered psychosocial support can be understood in terms of the behavioral model of health service use by Andersen.[13] In this model, use of psychosocial support depends on 1) predisposing factors (eg, age and marital status); 2) enabling factors (having the available means for service use [eg, employment and social support]); and 3) need factors for the use of health services (eg, quality of life or other psychological factors).

In the current study, we describe the subjective need for and use of support services, specifically child-focused and parenting-focused psychosocial support, among cancer survivors with minor or young adult children. Furthermore, exploratory analyses were used to help to identify predictors of the use of child-focused and parenting-focused psychosocial support, including predisposing, enabling, and need factors.

MATERIALS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES

Procedure and Participants

In cooperation with 2 population-based German cancer registries, we conducted a cross-sectional survey. The first survey period (Hamburg Cancer Registry) took place in August 2010. The second survey period (Schleswig-Holstein Cancer Registry) took place in July 2011. Eligible participants were aged 25 years to 55 years old and were diagnosed with cancer no more than 6 years before our survey. Patients who were diagnosed with a cancer characterized by a high mortality rate (ICD-10-codes C15-C17 and C22-C26 [digestive organs]; C33-C39 [lower respiratory organs]; and C69-C72 [eyes, brain, and other parts of the central nervous system]) were excluded for ethical reasons to prevent distress in families in which a patient may have died recently. Participation was voluntary. However, according to the Schleswig-Holstein registry, patients were only contacted if they had previously agreed to be approached with research requests. This applied to approximately 40% of all cases. Ethical committee approval was received before the study began from both federal medical associations. Both cancer registries have a high epidemiological quality, with an estimated completeness for all cancers of > 95%.[14, 15]

In total, 8144 potential participants received a consent form, a self-report questionnaire, and a stamped return envelope via mail. A reminder letter was sent after 4 weeks. Among the potential participants, 969 (11.9%) individuals had moved to an unknown address, 118 (1.4%) had passed away, 126 (1.5%) refused participation, 76 (0.9%) returned incomplete documents, 28 (0.3%) gave no information about the number or age of their children, and 16 (0.2%) did not participate because of other reasons. Furthermore, 3441 individuals (42.3%) did not respond to the survey or the reminder notice for unknown reasons.

To determine the representativeness of the sample, a comparison of responders (n = 3370) and nonresponders (n = 4630 individuals with analyzable data and n = 116 with no data provided by the cancer registries) was conducted. Given the large sample size, there were, unsurprisingly, significant differences noted between the responders and the nonresponders (eg, age [mean, 50.2 years ± 6.8 years vs 49.1 years ± 7.5 years], gender [74.0% female vs 66.3% female], diagnosis [51.9% with breast cancer vs 37.9% with breast cancer], tumor stage [44.9% with stage I disease vs 41.4% with stage I disease], and time since diagnosis [mean,44.4 months ± 23.2 months vs 46.6 months ± 17.6 months]; all P ≤ .001). However, effect sizes were small (range, d = 0.11 to d = 0.15). With regard to our research question, the analyses that follow refer to cancer survivors with at least 1 minor or young adult child aged ≤ 21 years at the time of the initial diagnosis. Of the 3370 participants in the current survey, 1809 had at least 1 child and therefore were included in the analyses.

Measures

Sociodemographic characteristics and treatment-related information were obtained by self-report questions. Distress in children because of cancer was assessed with a single item on a 6-point Likert scale ranging from 0 (not at all) to 5 (very strong) for up to 3 children separately (item: “Did your child become distressed during the time from diagnosis to the end of treatment because of your cancer?”). Patients with > 3 minor children (n = 36) were asked to evaluate 3 of their children. If there was at least 1 distressed child in the family (cutoff ≥ 3 indicates moderately distressed), the patient was categorized as having at least 1 cancer-related distressed child in the family (binary coded).

Socioeconomic status (SES) was assessed using the Winkler-Stolzenberg index,[16] measured by self-reported information on education and occupational qualifications, job-related position, and income. The index is categorized into 3 SES levels (low, middle, and high).

The medical characteristics of the respondents were provided by the cancer registries and included tumor diagnosis, time since initial diagnosis, and TNM classification of malignant tumors.

To identify the caseness (possible and probable) of anxiety disorders and depression among somatic patients, the widely used Hospital Anxiety and Depression Scale (HADS) was used.[17] Each of the scale's 14 items is rated from 0 to 3. Patients can be assigned to one of the 3 following categories: normal (0-7), possible anxiety or depression disorder (borderline case; 8-10), and probable case (≥ 11). The reliability for both subscales is good, with Cronbach alphas of 0.80 for the anxiety and 0.81 for the depression subscale.

The Oslo Social Support Scale was used.[18, 19] In this scale, the 3 items ask, “How easily can you get practical help from neighbors if you should need it?”; “How many people are close enough to you that you can count on them if you have serious problems?” and “How much concern do people show for what you are doing?”. The total score is calculated by summing the z scores for each item. Higher scores indicate greater social support. The reliability for our data was 0.71 (Cronbach alpha).

Family functioning was measured with a modified and translated version of the Family Assessment Device,[20] which was forward-backward translated into German in a similar research context.[21] For our analyses, we only used the General Functioning scale, which is recommended as a global score for family functioning.[22] This scale consists of 6 negative and 6 positive items (eg, “we confide in each other”) and has good reliability, with a Cronbach alpha of 0.94.[21] Low scores reflect healthy functioning and high scores reflect unhealthy functioning.

Health-related quality of life was measured with the SF-8 Health Survey.[23] We used the 2 summary scales for physical health and mental health. The reliability was 0.88 and 0.82, respectively, for physical health and mental health.[23] Each scale ranges from 0 to 100, with higher scores representing a higher quality of life.

Items related to the use and need for psychosocial support were selected from a previous study that examined participation in, and needs for, support services.[24] These items were subsequently modified to assess family-focused and child-focused support. The items use categorized answer scales (multiple responses are possible) to address information about previous participation in psychosocial support (13 items; eg, “have you used 1 of the following support services? Self-help group, psychological counseling, etc”) and perceived need for psychosocial services (13 items; eg, “I wish information regarding the child's emotional reaction to parental cancer; I wish a professional assessment of the child's reaction; In case you needed any kind of psychosocial support for the family and child, when was that? During diagnostic phase, during medical treatment, etc”).

Furthermore, the respondent's general attitude toward participation in psychosocial support was assessed with a 7-point Likert scale (very negative to very positive).

Statistical Analyses

Statistical analyses were conducted using the Statistical Package for the Social Sciences (version 15.0; SPSS Inc, Chicago, Ill). Descriptive statistics were calculated to outline the patterns of participation and need for psychosocial support services. Group differences were computed using the chi-square test for categorical data and a univariate analysis of variance for metric data. Analysis of variance assumptions were examined, revealing violations regarding homogeneity of the variances in dependent variables. Given that heterogeneous variances in combination with large group sizes make the F statistic more conservative,[25] we decided to use parametric statistics.

To identify significant predictors for the use of child-focused and family-focused support, a multivariable logistic regression analysis was performed (Method: Enter). The predisposing and enabling variables were gender, age, employment, living together with a partner, number of persons aged ≤ 18 years in the household, age of children, tumor site ‘breast’, comorbidity, and attitude toward psychosocial support. The included variables measuring patients' needs were assessed by anxiety and depression (HADS), physical and mental health (SF-8), general family functioning, and at least 1 distressed child in the family. Variables were included if they had an univariable association (P ≤ .25) with the criterion.[26] Given the known clinical importance of cancer staging, we included this variable in the final model even though 3 categories failed for the screening criteria. Furthermore, variables were included in the multivariable logistic regression analysis if they had a high correlation with the criterion and a low correlation with other potential predictors (P < .8).[25] As an indicator for goodness of fit, we assessed the Hosmer-Lemeshow test[26] and examined a classification table.

To estimate the magnitude of effects, effect sizes were calculated by Cohen's d, partial eta-squared and Cramer's V.[27] Two-tailed significance was examined using a significance level of P < .05.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES

Sample Characteristics

In total, 74% of the sample was female, with a mean age of 49 years (Table 1). Patients using family-centered support were more frequently female and younger and were less frequently in a partnership. There was more often a distressed child in the family among those patients using family-centered support (Table 1).

Table 1. Sociodemographic and Medical Characteristics of NPS, IPS, FPS Users (n = 1809)
 Total (n = 1809), %NPS Users (n = 1005), %IPS Users (n = 643), %FPS Users (n = 161), %P1V/η2pa
  1. Abbreviations: ENT, ear, nose, throat; FPS, family-centered psychosocial support; IPS, individual psychosocial support; NPS, no psychosocial support; SD, standard deviation; UICC, International Union Against Cancer.

  2. Multiple use of psychosocial support is possible: the categories IPS and FPS can be overlapping, preferring the FPS group when individuals are participating in both kinds of support services. A total of 35 individuals used FPS exclusively, whereas 126 used IPS and FPS.

  3. P value determined using the chi-square test and analysis of variance. Bold type indicates statistical significance.

  4. a

    Effect sizes: η2p, partial eta square; V, Cramer's V.

  5. b

    Significant contrast, as compared for every group with the overall effect.

Total10055.635.58.9<.001 
Female sex73.567.580.782.0<.0010.15
Mean age (SD), y49.0 (6.1)49.4 (6.2)b48.9 (5.9)b46.2 (5.7)b<.001.02
Age, y    <.001.117
<352.42.42.23.1
35-404.03.44.27.5
40-4516.114.814.928.6
45-5028.426.429.935.4
50-5549.153.048.825.5
Partnership: yes88.090.785.879.4<.001.11
Living together92.593.392.188.3.117.052
Marital status
Unmarried/single5.25.33.99.9<.001.092
Married76.078.974.763.4
Married/separated4.73.26.18.7
Divorced11.910.712.815.5
Widowed2.21.92.52.5
Mean no. of children (SD)2 (0.9)2 (0.9)2 (0.8)2 (1).365.001
Distressed child in the family64.857.371.783.9<.001.188
Socioeconomic class    .011.06
Lower class22.024.917.721.7
Middle class50.749.952.149.7
Upper class27.325.230.228.6
Employed: yes75.079.169.572.0<.001.11
Mean time since diagnosis (SD), mo48.5 (33.1)47.6 (32.1)50.7 (36.6)45.3 (33.1)  
Diagnosis    <.001.14
Breast53.245.661.067.1
Female genital organs7.17.67.33.1
Urinary tract2.93.72.30.6
Digestive organs6.97.85.47.5
ENT2.93.22.61.9
Skin6.99.53.35.0
Soft tissue0.80.90.61.2
Prostate10.011.78.45.6
Hematological7.27.76.76.8
Others2.32.52.31.2
UICC disease stage    .650.04
I44.846.843.638.5
II33.331.734.237.7
III16.316.415.818.0
IV5.65.16.45.7
Treatment
Surgery93.992.795.893.8.038.060
Chemotherapy57.150.563.771.4<.001.154
Radiotherapy61.857.468.562.7<.001.107
Presence of a comorbidity24.219.330.329.6<.001.126

Psychological Distress, Social Support, Family Functioning, and Quality of Life

In this study, approximately 38% of patients were categorized as being borderline or probable cases of anxiety disorder. For depression, 17% were identified as borderline cases or probable cases.

Patients using individual psychosocial support or family-centered support reported higher levels of depression and anxiety and were more frequently classified as having an affective disorder. Furthermore, patients participating in psychosocial support perceived poorer family functioning, a lower health-related quality of life, and less social support (only individual support user) (Table 2).

Table 2. Anxiety and Depression, Social Support QOL, and Family Functioning Compared Between Different Psychosocial Support Users (NPS, IPS, and FPS) (n = 1775)
 Total (n = 1775)NPS (n = 980)IPS (n = 637)FPS (n = 158)  
 MeanSDMeanSDMeanSDMeanSDPV/η2p
  1. Abbreviations: FPS, family-centered psychosocial support; IPS, individual psychosocial support; NPS, no psychosocial support; QOL, quality of life; SD, standard deviation.

  2. a

    According to the Hospital Anxiety and Depression Scale (HADS) (range, 0-21).

  3. b

    Significant contrast between NPS vs IPS or FPS (simple contrast, NPS reference category).

  4. c

    P value determined according to analysis of variance. Effect size (η2p).

  5. d

    P value determined according to the chi-square test. Effect size (V).

  6. e

    According to the Oslo Social Support Scale (range, 3-14).

  7. f

    According to the SF-8 Health Survey (range, 0-100).

  8. g

    According to the General Family Functioning Scale of the Family Assessment Device (range, 1-4).

Anxietya6.74.15.83.98.0b4.17.6b3.9<.001c.053
Depressiona3.83.83.23.64.8b4.14.2b3.6<.001c.040
Anxiety, %
Normal62.1 72.3 49.0 51.3 <.001d.117
Borderline19.0 14.7 24.6 22.8 
Probable case18.9 13.0 26.4 25.9 
Depression, %
Normal83.4 88.3 75.3 85.4 <.001d.168
Borderline9.4 6.7 14.3 6.3 
Probable case7.2 5.0 10.4 8.2 
Social supporte11.02.211.22.110.7b2.311.02.4.016c.009
Health-related QOLf
Physical health49.19.450.29.047.8b9.747.6b10.2<.001c.018
Mental health49.610.552.09.146.7b11.045.9b11.9<.001c.049
General family functioningg1.60.51.60.51.7b0.51.7b0.6<.001c.013

Use of Psychosocial Support Services

Since their initial cancer diagnosis, 44% of the cancer survivors with minor or young adult children had used any kind of psychosocial support program (multiple answers possible); approximately 43% of respondents with children participated in individual psychosocial support services, such as professional psychological counseling (39%), spiritual counseling (7%), and psychotherapy or psychiatric treatment (32%). Of these patients, 6% used psychotherapy or psychiatric treatment before and after their diagnosis. Of those using individual psychosocial support, 82% rated professional psychological counseling as helpful. In comparison, 42% of cancer survivors without children used individual psychosocial support (chi-square test, 9.15; P = <.011). Moreover, 9% of the respondents with children used family-centered support, such as family-centered or child-centered psychosocial counseling (7%) or educational counseling (5%), which was evaluated as helpful in 74% of the cases.

Perceived Needs of Family-Centered Psychosocial Support Services

This study found that 68% of cancer survivors with children wanted information regarding parental cancer (eg, how to tell children about cancer, how children react emotionally to a diagnosis of parental cancer) and 66% wanted actual support concerning this issue. In total, 73% of cancer survivors with children wanted information or psychosocial support concerning parental cancer. Parents with younger children expressed a need for greater educational and emotional support for their children (Fig. 1). The need for talking about cancer within the family was found to be equally distributed by the childrens' age groups.

image

Figure 1. Frequencies of different needs for support regarding parental cancer are shown by childrens' age group (youngest child in the family) as a percentage (n = 1809). χ2 indicates chi-square test.

Download figure to PowerPoint

The time during medical treatment was the most frequently reported period of time during which cancer survivors experienced the greatest need for support for the family and child(64%). The most frequent reasons for nonparticipation in family-centered support indicated that patients felt well supported or assessed themselves and their children as not being in need of professional support (Table 3).

Table 3. Frequencies for Reasons Why Cancer Survivors Did Not Use Family-Centered Psychosocial Support (n = 1648)a
Reasons for NonparticipationNo.%
  1. Multiple responses were possible.

Sufficient support from social environment104978.5
In our family, no one needs/needed family-centered support87565.0
Lack of knowledge about support offers66048.7
Prefer to talk to physician about problems in the family51238.7
Psychosocial support is not useful for our family45435.7
No time for such an offer23017.5
Offers for psychosocial support are/were too far away21316.6
Psychosocial support stresses my family18113.5
Children not told about parental cancer1017.5

Prediction of Seeking Psychosocial Support Services

Multivariable logistic regression analysis revealed that family-centered support use can be predicted by the patient not living together with a partner, a greater number of persons aged <18 years living in the household, having at least 1 distressed child in the family, poorer mental health, having younger children at the time of the initial diagnosis, and a more positive attitude toward psychosocial services (Table 4). The Hosmer-Lemeshow test yielded a chi-square of 5.226 (P = .733), suggesting that the model fits well to the data. Classification was satisfying, with 89% of cases being correctly predicted.

Table 4. Final Multivariable Logistic Regression Model Containing Potential Predictors Found to Be Significant at the P ≤ 0.25 Level on Univariable Analyses (n = 1809)
Final Multivariable Logistic Regression Model
 BSEWaldPOR95% CI
  1. Abbreviations: 95% CI, 95% confidence interval; FAD, Family Assessment Device; HADS, Hospital Anxiety and Depression Scale; OR, odds ratio; SE, standard error; SF-8, SF-8 Health Survey; UICC, International Union Against Cancer.

  2. a

    Male/female (0/1).

  3. b

    No/yes (0/1).

  4. c

    Bold type indicates that the variable was significant at P<.05.

  5. d

    Single item (range, 0-4).

  6. e

    According to HADS (range, 0-21).

  7. f

    According to SF-8 (range. 0-100).

  8. g

    According to the General Family Functioning Scale of FAD (range, 1-4).

Predisposing Variables
Gendera0.30.60.3.5641.40.5-4.0
Age0.00.01.1.2851.00.9-1.0
Living together with partnerb−1.10.317.3<.001c0.30.2-0.6
No. of children0.00.10.0.9411.00.7-1.3
No. of persons aged <18 y in household0.40.24.8.028c1.51.0-2.2
Tumor site: breastb0.70.43.3.0711.90.9-4.0
Metastasisb2.31.52.6.10610.50.6-181.2
Comorbid conditionb0.40.31.4.2321.40.8-2.6
UICC stage
I  2.9.411  
II0.20.30.5.4601.20.7-2.0
III0.20.30.4.5221.20.6-2.3
IV−2.11.61.8.1790.10.0-2.7
Age of youngest child at time of initial diagnosis−0.10.05.7.017c0.90.9-1.0
Enabling Resources
Employedb0.30.31.5.2241.40.8-2.4
Attitude toward psychosocial servicesd0.40.25.5.019c1.51.1-2.1
Need
Anxiety (HADS)e−0.10.02.9.0890.90.9-1.0
Depression (HADS)e0.00.00.6.4451.00.9-1.1
At least 1 child distressed in the familyb0.80.35.5.019c2.31.1-4.5
Physical health (SF-8)f0.00.02.1.1471.01.0-1.0
Mental health (SF-8)f0.00.06.5.011c1.00.9-1.0
General family functioning (FAD)g0.30.21.8.1791.40.9-2.2

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES

This population-based study retrospectively investigated the use and need for psychosocial support services by cancer survivors (within 6 years since the time of the initial cancer diagnosis) with minor or young adult children and explored the perceived need for and use of child-focused and parenting-focused psychosocial support.

A relatively high percentage (44%) of patients with children had used any kind of professional psychosocial support since their initial cancer diagnosis, indicating the importance of these offers after diagnosis of a severe disease, especially for younger patients. Conversely, studies concerning psychosocial care use by older patients report lower rates of use.[28]

Although the expressed subjective psychosocial need for support or information concerning parental cancer was high for cancer survivors with children (73%), family-centered support was used by only 9% of these respondents. Common barriers to the use of these options by families and patients include a lack of knowledge and a preference for talking with a physician about problems. Thus, despite the finding that existing guidelines for psychosocial cancer care include the families and children of cancer patients,[9] the integration of family-centered support into oncology care is not systematic.[29] In addition, patients might prefer brief child-focused and family-focused interventions within the context of routine care. The step of seeking specific family-centered service exclusively might be too far. Because greater than one-half of the participants received sufficient support from their social environment, not every patient may require specific family-centered support. However, to assess children's burden, another perspective might be needed because parents often underestimate their children's distress regarding cancer.[30]

The finding that patients reported the highest need for support for their families and children during medical treatment indicates that patients should be screened for distress during this period and should be given brief emotional support on how to talk with children about cancer and its effects on the future. This confirms the need to educate health professionals about the psychological burden of patients' children.

Although predisposing factors such as SES, gender, and age appeared to influence access to professional psychosocial support in other studies,[28, 31] in this younger sample of cancer survivors with children, not living together with a partner, having a greater number of children aged < 18 years in the household, and having younger children at the time of the initial diagnosis were found to be relevant factors in predicting the use of family-centered support services. Furthermore, 2 needs (having a distressed child in the family and the mental health of the patient) were found to be relatively strong predictors of the use of family-centered support. These findings suggest that perceived need remains an important factor driving family-centered support use. Predisposing medical factors, such as disease stage and time since diagnosis, do not appear to be relevant.

There are some limitations to the current study. This was a registry-based study and patients were contacted without having had previous contact with our research institution. Thus, the response rate (41.3%) is similar to that of other cancer registry-based studies.[32] Nonetheless, there is uncertainty concerning the representativeness of the sample. Further research is needed to determine whether the findings apply to patients with cancers with a high mortality rate.

The findings suggest that parental cancer should be considered in adult health care planning. Further research is needed to develop clinically usable assessment tools to identify those families who are distressed and in need of support, and to gain more insight into what kind of service is suitable for patients with minor children. Patients with newly diagnosed cancer should be asked regularly whether they have minor children and should be informed about appropriate support services.

FUNDING SUPPORT

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES

This study is part of the German multisite research project “Psychosocial Services for Children of Parents with Cancer” and is supported by the German Cancer Aid (grant 108303). In this multisite project, the following institutions are collaborating: Department of Child and Adolescent Psychiatry and Psychotherapy, Hamburg-Eppendorf University Medical Center (Principal Investigator: Georg Romer, MD); Institute of Medical Psychology, Hamburg-Eppendorf University Medical Center (Principal Investigator: Uwe Koch-Gromus, MSc, PhD, MD); Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, Charite University Medical Center, Berlin (Principal Investigator: Ulrike Lehmkuhl, MSc, MD); Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics, University Medical Center, Leipzig (Principal Investigator: Kai v. Klitzing, MD); Institute of Medical Psychology, University Medical Center, Leipzig (Principal Investigator: Elmar Brähler, MSc, PhD); Department of Psychosomatic and General Clinical Medicine; University Medical Center, Heidelberg (Principal Investigator: Wolfgang Herzog, MD); Department of Child and Adolescent Psychiatry, University Medical Center, Heidelberg (Principal Investigator: Franz Resch, MD); and Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics, Otto-von-Guericke University, Magdeburg (Principal Investigator: Hans-Henning Flechtner, MD).

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SUPPORT
  8. CONFLICT OF INTEREST DISCLOSURES
  9. REFERENCES
  • 1
    Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology. 2001;10:1928.
  • 2
    Sellick SM, Crooks DL. Depression and cancer: an appraisal of the literature for prevalence, detection, and practice guideline development for psychological interventions. Psychooncology. 1999;8:315333.
  • 3
    Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psychooncology. 2007;16:101126.
  • 4
    Hagedoorn M, Kreicbergs U, Appel C. Coping with cancer: the perspective of patients' relatives. Acta Oncol. 2011;50:205211.
  • 5
    Romer G, Möller B, Haagen M, Quitmann J, Riedesser P. Psychological distress and coping of children with a parent having cancer. In: Koch U, Weis J, eds. Psycho-oncology - a discipline in development. [in German]. Gottingen: Hogrefe; 2009:4462.
  • 6
    Ernst J, Richter D, Leuteritz K, Klenert E, Schmid R, Brahler E. Psychological distress of parents of minor children having cancer. [in German]. Verhaltensther Psychosoz Praxis. 2011;43:5562.
  • 7
    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;116:43954401.
  • 8
    Regan TW, Lambert SD, Girgis A, Kelly B, Kayser K, Turner J. Do couple-based interventions make a difference for couples affected by cancer? A systematic review. BMC Cancer. 2012;12:279.
  • 9
    National Institute for Clinical Excellence. Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults With Cancer. Available from URL: http://guidance.nice.org.uk/CSGSP/Guidance/pdf/English [accessed June 15, 2012].
  • 10
    Ernst J, Zenger M, Schmidt R, Schwarz R, Brahler E. Medical and psychosocial care needs of cancer patients: a systematic review comparing urban and rural provisions [in German]. Dtsch Med Wochenschr. 2010;135:15311537.
  • 11
    Ernst JC, Beierlein V, Romer G, Moller B, Koch U, Bergelt C. Psychosocial care of children with a parent having cancer–an appraisal of specific care services in Germany [in German]. Psychother Psychosom Med Psychol. 2011;61:426434.
  • 12
    Niemela M, Paananen R, Hakko H, Merikukka M, Gissler M, Rasanen S. The prevalence of children affected by parental cancer and their use of specialized psychiatric services: the 1987 Finnish Birth Cohort study. Int J Cancer. 2012;131:21172125.
  • 13
    Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995;36:110.
  • 14
    Free and Hanseatic City of Hamburg, Public health authority and consumer protection. Cancer documentation of Hamburg 2007-2009. [in German] Available from URL: http://www.hamburg.de/contentblob/2157870/data/krebsdokumentation-2007-2009-teil1.pdf [accessed June 13, 2012].
  • 15
    Cancer registry of Schleswig-Holstein, Institute of Cancer Epidemiology of Schleswig-Holstein. Incidence and Mortality in 2008. [in German]. Available from URL: http://www.krebsregister-sh.de/berichte/kish2008.pdf [accessed June 1, 2012].
  • 16
    Winkler J. Measurement of social status with an index in health surveys of the DHP (Robert Koch-Institute papers). In: Ahrens W, Bellach BM, Jockel KH, eds. Measurement of sociodemographic characteristics in epidemiology. [in German]. Munich: MMV Medizinverlag; 1998:6974.
  • 17
    Herrmann-Lingen C, Buss U, Snaith RP. HADS-D: Hospital Anxiety and Depression Scale [German version]. Bern: Verlag Hans Huber; 1995.
  • 18
    Dowrick C, Casey P, Dalgard O, et al. Outcomes of Depression International Network (ODIN). Background, methods and field trials. ODIN Group. Br J Psychiatry. 1998;172:359363.
  • 19
    Meltzer H. Development of a common instrument for mental health. In: Nosikov A, Gudex C, eds. EUROHIS: Developing Common Instruments for Health Surveys. Amsterdam, the Netherlands. IOS Press; 2003.
  • 20
    Epstein NB, Baldwin LM, Bishop DS. The McMaster Family Assessment Device. J Marital Fam Ther. 1983;9:171180.
  • 21
    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;26:58775883.
  • 22
    Byles JA, Byrne C, Boyle MH, Offord DR. Ontario Child Health Study: reliability and validity of the general functioning subscale of the McMaster Family Assessment Device. Fam Process. 1988;27:97104.
  • 23
    Ware JE, Kosinski M, Dewey JE, Gandek B. How to Score and Interpret Single-Item Health Status Measures: A Manual for Users of the SF-8 Health Survey. Lincoln, RI: QualityMetric Inc; 1999.
  • 24
    Plass A, Koch U. Participation of oncological outpatients in psychosocial support. Psychooncology. 2001;10:511520.
  • 25
    Stevens JP. Applied Multivariate Statistics for the Social Sciences. 4th ed. Mahwah, NJ: Lawrence Erlbaum Associates; 2002.
  • 26
    Hosmer D, Lemeshow S. Applied Logistic Regression. 2nd ed. New York, NY: John Wiley & Sons; 2000.
  • 27
    Cohen J. Statistical Power Analysis for the Behavioral Science. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988.
  • 28
    Mehnert A, Koch U. Psychological comorbidity and health-related quality of life and its association with awareness, utilization, and need for psychosocial support in a cancer register-based sample of long-term breast cancer survivors. J Psychosom Res. 2008;64:383391.
  • 29
    Romer G, Saha R, Haagen M, Pott M, Baldus C, Bergelt C. Lessons learned in the implementation of an innovative consultation and liaison service for children of cancer patients in various hospital settings. Psychooncology. 2007;16:138148.
  • 30
    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;14:746758.
  • 31
    Krizek C, Roberts C, Ragan R, Ferrara JJ, Lord B. Gender and cancer support group participation. Cancer Pract. 1999;7:8692.
  • 32
    Bellizzi KM, Smith A, Schmidt S, et al.; Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study Collaborative Group. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012;118:51555162.