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Received: 11 February 2019 Revised: 23 April 2019 Accepted: 27 May 2019

DOI: 10.1002/pon.5138

PAPER

Parenting in the face of serious illness: Childhood cancer


survivors remember different rearing behavior than the general
population

Mareike Ernst1 | Elmar Brähler1 | Eva M. Klein1 | Claus Jünger2 | Philipp S. Wild2,3,4 |

Jörg Faber5 | Astrid Schneider6 | Manfred E. Beutel1

1
Department of Psychosomatic Medicine and
Psychotherapy, University Medical Center of Abstract
the Johannes Gutenberg‐University Mainz,
Objective: A child's cancer diagnosis and treatment affect the whole family. While
Mainz, Germany
2 it has been recognized that parents are an important resource for their children, little
Preventive Cardiology and Preventive
Medicine, Center for Cardiology, University is known about the specifics of parenting in the face of serious illness.
Medical Center of the Johannes Gutenberg‐
University Mainz, Mainz, Germany Methods: We used the Recalled Parental Rearing Behavior Questionnaire in a
3
Center for Thrombosis and Hemostasis register‐based cohort of adult childhood cancer survivors (CCS) (N = 951) and a rep-
(CTH), University Medical Center of the
resentative population sample of the same age range (N = 2042). The questionnaire
Johannes Gutenberg‐University Mainz, Mainz,
Germany assesses behavior of mothers and fathers with three scales (emotional warmth,
4
German Center for Cardiovascular Research rejection/punishment, and control/overprotection) by querying the (former) child.
(DZHK), Mainz, Germany
5
We compared the two groups using general linear models. With a hierarchical linear
Department of Pediatric
Hematology/Oncology/Hemostaseology, regression analysis, we tested associations of recalled rearing behavior with
Center for Pediatric and Adolescent Medicine, disease‐ and treatment‐related factors.
University Medical Center of the Johannes
Gutenberg‐University Mainz, Mainz, Germany Results: Compared with the general population, CCS remembered both parents as
6
Institute for Medical Biostatistics, emotionally warmer, more overprotective, and less punishing/rejecting and less ambi-
Epidemiology and Informatics, University
Medical Center of the Johannes Gutenberg‐
tious. The regression analysis showed that having received radiotherapy (β = 0.092;
University Mainz, Mainz, Germany P = .009) and chemotherapy (β = 0.077; P = .027) was positively related to memories

Correspondence
of maternal emotional warmth.
Mareike Ernst, Department of Psychosomatic Conclusions: CCS remembered parenting styles which are generally deemed more
Medicine and Psychotherapy, University
Medical Center Johannes Gutenberg, positive. The extent of recalled control and overprotection deviated from the popula-
University Mainz, Untere Zahlbacher Str. 8, tion in different directions, suggesting that parenting in childhood cancer entails
55131 Mainz, Germany.
Email: mareike.ernst@unimedizin‐mainz.de more complex adaptations than being affectionate and giving comfort. The results
suggest an adaptation of parental behavior to particularly challenging treatments.
Funding information
Federal Ministry of Education and Research, They highlight potential vulnerability and resilience factors, some of which were
Grant/Award Number: BMBF01EO1503; Ger- sex‐dependent.
man Cancer Aid, Grant/Award Number:
70112165; German Research Foundation,
Grant/Award Numbers: FA1038/2‐1&2, K E Y W OR D S
SP1381/2‐1&2 and WI3881/2‐1&2 adaptation, cancer, childhood cancer survivors, family relations, oncology, parenting, pediatric,
survivorship

Psycho‐Oncology. 2019;28:1663–1670. wileyonlinelibrary.com/journal/pon © 2019 John Wiley & Sons, Ltd. 1663
1664 ERNST ET AL.

1 | I N T RO D U CT I O N We aim to build upon the research discussed above by quantita-


tively examining parental behavior within a large sample of long‐term
After a diagnosis of childhood cancer, families go through processes of CCS using the Recalled Parental Rearing Behavior Questionnaire,
disruption and adaptation. Although medical advances have signifi- examining the control/overprotection scale as a whole and as
cantly increased survival rates,1 meeting the demands of complex separate items, comparing CCS with a representative sample from
treatment protocols, managing side and late effects, and uncertainty the population, investigating sex differences, and exploring whether
about the course of treatment exert considerable strains on patients, disease‐related variables are linked to rearing behavior.
2-4
siblings, and parents. Parents act as stewards of their children
regarding care decisions while they struggle to meet other responsibil-
ities at home and at work.5-7 2 | METHODS
Thus, parent‐child relationships can be affected by childhood
cancer in different ways: For instance, the wish to avoid negative 2.1 | Participants
8
emotions and phantasies (eg, that their child might not survive ) can
limit parents' capacity to attend to children's emotional needs in a The German Childhood Cancer Registry (GCCR) systematically docu-
well‐attuned way. During separations because of hospital treatments, ments former patients treated for childhood cancer residing in
children might even feel they have lost the relationship with their par- Germany.20 To comprehensively assess their physical and psychoso-
ents.9 On the other hand, parents who wish to protect their children cial health status, they were invited to take part in the projects Cardiac
as best they can might also undermine the children's needs for auton- and Vascular Late Sequelae in Long‐Term Survivors of Childhood
omy and individual development. This was indicated by quantitative Cancer (CVSS; clinicaltrials.gov‐nr. NCT02181049) and its add‐on
and qualitative studies 10-12
which reported higher levels of overpro- Psycho‐Social Long‐Term Effects, Health Behavior and Prevention
tection and concern among parents of children with cancer, irrespec- Among Long‐Term Survivors of Cancer in Childhood and Adolescence
tive of treatment status. These behaviors include, eg, the limitation (PSYNA). CCS eligible for participation were diagnosed with a neopla-
of the child's free‐time activities such as playing outside. Shortly after sia according to the International Classification of Childhood Cancer
treatment, children and parents alike identified overprotection as a (ICCC3) between the years 1980 and 1990 when they were less than
source of family conflict. 13
On the other hand, parents have placed 15 years old and had been treated at 1 of the 34 participating pediatric
fewer demands on children with cancer, spoiled them, and favored cancer centers. Survivors of Hodgkin lymphoma and a small propor-
them over siblings.10,13,14 This behavior was especially pronounced tion of former nephroblastoma patients were not considered as they
in the first year after diagnosis. 10
Parents have also reported deeper took part in other investigations. Of 2894 invited CCS, 1002 took part
bonds with the acutely afflicted child, 15 9
especially mothers. in the study's examinations carried out between October 2013 and
To date, only few research endeavors have investigated different February 2016. After excluding 51 CCS due to subsequent malignant
facets of parenting in the context of cancer in a systematic way by neoplasms, the final sample consisted of 951 individuals. The largest
questioning survivors with an established questionnaire: The Recalled diagnosis groups were leukemias (43.5%), CNS tumors (12.8%), and
Parental Rearing Behavior Questionnaire reliably assesses the (former) lymphomas (9.9%).21 CVSS/PSYNA is carried out in accordance with
child's mental representations of paternal and maternal emotional the ethics standards of the institutional research committee (approved
warmth, rejection/punishment, and control/overprotection.16,17 Using by ethics review committee of Rhineland‐Palatinate Chamber of
this questionnaire, a recent Korean study found relations of recalled Physicians, nr. 837.453.13(9138‐F)) and with the Declaration of
emotional warmth and quality of life in adolescents affected by leuke- Helsinki. All participants gave written informed consent for study
mia.18
Further, compared with age‐matched controls, young adult participation and data retrieval.
long‐term cancer survivors were found to remember both their A representative community sample from the German population
parents as emotionally warmer and their mothers as less rejecting. 19 was surveyed by the Berlin‐based independent institute USUMA
Surprisingly, this investigation reported no differences between can- (independent service for surveys, methods, and analyses). Participants
cer survivors and controls concerning the control/overprotection were selected via random‐route procedure.22 Previous research used
scale, contrasting reports of the predominantly qualitative studies information from the Federal Statistical Office to attest to the sam-
which had investigated these aspects separately and attested to ple's representativity for the German residential population.17 All
higher levels of overprotective parental behavior.10 Thus, there might 5036 participants took part voluntarily. They were informed about
be differences between the families' reports a short time after the data usage and data protection in agreement with the Helsinki
acute treatment phase and retrospective survivor reports. However, Declaration. The study was approved according to the ethical guide-
the respective scale of the questionnaire also contains aspects of lines of the German Professional Institutions for Social Research.
performance/success motivation which was previously diminished
among cancer survivors' parents.14 Hence, there is a need to investi- 2.2 | Assessment and measurements
gate these subjective experiences separated from each other to clarify
which types of behavior were perceived as more or less present by At the study center in Mainz, CVSS/PSYNA participants completed a
long‐term survivors. standardized 5.5‐hour examination program including cardiovascular
ERNST ET AL. 1665

and clinical phenotyping, self‐administered questionnaires, and a of the dependent variable's variance in a statistically significant way
computer‐assisted personal interview (CAPI).21,23 after accounting for all other variables. We did this separately for
CCS and the representative sample completed the German ultra- maternal and paternal rearing behavior. Missing values were not
short screening version of the Recalled Parental Rearing Behavior imputed and are reported in the table legends. Sensitivity analysis
Questionnaire.16 It was derived from the Swedish scale Egna Minnen was performed using the calculator provided by Soper.27 As we are
av Barndoms Uppfostran (EMBU; my memories of upbringing). Previ- not aware of comparable investigations, we tested the sample size
ous studies using the short version have attested to its satisfactory required to observe a small effect ( f 2 = 0.02) on recalled rearing
to good psychometric properties and measurement invariance with behavior taking all five predictors of the final model into account,
respect to sex and age.17,24 The selected items had previously shown yielding a minimum number of 91 participants. Regression models
the highest factor loadings and had a high, positive correlation were checked for multicollinearity using the variance inflation factor
with the total value. Its subscales had relevant associations with (VIF). No observed VIF was larger than 4 (10 being the critical thresh-
relationship status, resilience, and depression and anxiety symptoms old28), indicating no concerning levels of multicollinearity. Effect sizes
17,24,25
in representative samples from the German population and (d) and regression coefficients are interpreted after Cohen.29 P values
26
with resilience in a clinical Korean sample. correspond to two‐tailed tests. Statistical analyses were performed
The scale consists of 12 items (3 dimensions with 2 questions per using SPSS 23 for Windows.
parent) referring to parenting style and behavior: “Did your
mother/father comfort you when you were sad?” and “Was your
mother/father able to smooch with you?” assessing emotional 3 | RESULTS
warmth, “Did your mother/father spur you to become the best?” (in
the following called ambition) and “Do you think that your
3.1 | Sample description
mother's/father's anxiety that something might happen to you was
exaggerated?” (in the following called overprotection), assessing Table 1 gives an overview of the CCS' and the population sample's
control/overprotection, “Have you been punished hard by your demographic characteristics and mean values for the different facets
mother/father, even for trifles (small offenses)?” and “Did it happen of parental rearing behavior. The most common treatment exposure
that your mother/father gave you corporal punishment without rea- among CCS was the combination of radiotherapy and chemotherapy.
son?”, and assessing rejection/punishment. Participants judge the The population sample was less likely to have a high level of educa-
respective frequency of occurrence on a Likert scale ranging from tion. This was true for men (d = 0.47) and women (d = 0.42). Cancer
0 = no, never to 3 = yes, always. In the present study, reliability esti- survivors were less likely to be married (men: d = 0.26; women:
mates of the scales were ω = 0.82 (emotional warmth), ω = 0.76 d = 0.50) (see Table SS1 for univariate comparisons).
(rejection/punishment), and ω = 0.71 (control/overprotection).

3.2 | Comparison of the two samples' recalled


2.3 | Statistical analysis parental rearing behavior

The representative sample's age (initial age range 14‐92 years) was We observed consistent, but small group effects (Table 2): CCS
aligned to CCS by excluding younger (<23 years) and older (>48 years) recalled their fathers and mother as emotionally warmer and less
participants. This reduced the initial sample of 5036 participants to rejecting/punishing. Regarding the control/overprotection scale,
2042. To robustly compare means, we conducted a general linear group affiliation had no impact on the maternal sum score; the
model (GLM). We modeled group (CCS vs population) and sex as fixed paternal sum score was lower in CCS. The single items were differ-
effects and age as a covariate. Criterion variables were the three ently affected by group affiliation: Maternal and paternal ambition
dimensions per parent (emotional warmth, rejection/punishment, and was reported as weaker by CCS, and overprotection as more
control/overprotection). Items of the control/overprotection scale pronounced. Age effects pertained to emotional warmth and
were investigated separately to offer more insight into the inconclu- control/overprotection (sum score and ambition item): Older
19
sive results of previous research. As this resulted in three GLMs participants remembered their parents as less warm, and less
investigating the dependent variable(s) control/overprotection (per controlling/overprotecting, in particular as less ambitious. There were
parent), for these analyses, the threshold for P values considered sig- also effects of the participants' sex: Women remembered mothers and
nificant was lowered to P = .017 (in all other instances, it was fathers as emotionally warmer. Women also remembered mothers as
P = .05). To investigate the relevance of disease‐related characteris- more rejecting, whereas men remembered fathers as more rejecting.
tics, we tested them as factors in separate hierarchical linear There was one interaction effect between group and sex: Male CCS
regression models (one per each scale of the Recalled Parental reported fathers as less rejecting than men of the general population.
Rearing Behavior Questionnaire and one per item of the control/ This effect was not present in women. There were different effects of
overprotection scale). Hierarchical linear regression allows for testing sex regarding the separate items of the control/overprotection scale.
whether the introduction of new predictors adds to the explanation Men remembered both parents as more ambitious than female
1666 ERNST ET AL.

TABLE 1 Demographic, disease‐, and treatment‐related information and recalled rearing behavior

Childhood Cancer Survivors Population Sample

Women Women
All N = 951 Men N = 526 N = 425 All N = 2042 Men N = 880 N = 1162

M SD M SD M SD M SD M SD M SD

Age 34.05 5.56 34.50 5.50 33.48 5.58 36.50 7.26 36.40 7.52 36.59 7.05
Age at diagnosis 6.14 4.28 6.56 4.32 5.63 4.18
Parental rearing behavior
Emotional warmth (mother)b 3.92 1.45 3.77 1.33 4.12 1.58 3.46 1.42 3.30 1.38 3.58 1.44
Emotional warmth (father)b 3.05 1.61 2.82 1.52 3.35 1.66 2.42 1.57 2.15 1.48 2.61 1.61
b
Rejection/punishment (mother) 0.34 0.73 0.31 0.63 0.38 0.83 0.47 0.89 0.42 0.80 0.51 0.94
b
Rejection/punishment (father) 0.37 0.76 0.37 0.72 0.36 0.82 0.65 1.03 0.76 1.09 0.56 0.97
Control/overprotection (mother)b 1.57 1.34 1.59 1.30 1.54 1.39 1.61 1.30 1.59 1.25 1.64 1.34
c
Overprotection 1.07 0.99 1.06 0.94 1.10 1.05 0.87 0.85 0.83 0.83 0.91 0.87
Ambitionc 0.50 0.75 0.54 0.77 0.45 0.71 0.74 0.81 0.76 0.78 0.73 0.83
b
Control/overprotection (father) 1.15 1.15 1.16 1.11 1.14 1.19 1.32 1.17 1.38 1.16 1.28 1.18
c
Overprotection 0.65 0.77 0.61 0.73 0.70 0.81 0.52 0.68 0.46 0.65 0.57 0.71
Ambitionc 0.50 0.75 0.54 0.76 0.44 0.73 0.80 0.84 0.91 0.86 0.71 0.82

n % n % n % n % n % n %

Demographics
High educationa 390 41.01 223 42.4 167 39.3 406 19.89 183 20.8 223 19.2
Married 354 37.23 200 38.0 154 36.2 1,188 58.18 453 51.5 735 64.8
Treatment‐related variables
Chemotherapy and radiation 444 46.7 248 47.1 196 46.1
Chemotherapy only 325 34.2 179 34.0 146 34.4
Radiation only 27 2.8 17 3.2 10 2.4
None of the two 74 7.8 41 7.8 33 7.8

Note. Missing values: marital status: 1 female CCS, educational level: 2 female CCS.
a
German Abitur/equivalent qualification ranked 4 in the European Qualifications Framework (EQF), required for postsecondary education at universities.
b
Range 0‐6.
c
Range 0‐3.

participants. However, women reported their fathers as more parents, corroborating the results of the previously reported GLM.
overprotective than men. Disease‐related variables associated with maternal warmth were che-
motherapy and radiotherapy: Participants who had undergone these
treatments remembered their mothers as emotionally warmer. Female
3.3 | Relations of disease characteristics and rearing sex was also positively related to the recalled paternal warmth.
behavior However, neither age at diagnoses nor therapy variables added
predictive power to the model.
We conducted hierarchical linear regressions to test whether disease‐
related characteristics (age at diagnosis, chemotherapy, and radiation)
were related to recalled parental rearing behavior (Table 3). Only the 4 | DISCUSSION
regression models with the dependent variables maternal warmth
(final model: R2 = 0.053, F (5, 820) = 10.236, P < .001) and paternal Drawing from a large, register‐based sample of long‐term CCS and a
warmth (final model: R2 = 0.036, F (2, 785) = 6.978, P < .001) representative sample from the community, the present study con-
explained statistically relevant proportions of variation in recalled rear- firmed differences between CCS and the general population in
ing behavior. This suggests that the predictors were not related to recalled rearing behavior using a validated questionnaire. The results
recalled rejection/punishment and control/overprotection. Female speak to an adaptation of parents' rearing behavior to the special,
sex was positively associated with recalled emotional warmth of both taxing situation of caring for a child afflicted by a serious illness. Our
ERNST ET AL. 1667

TABLE 2 Results of the general linear models on parental rearing results corroborate previous research showing that CCS recalled both
behavior their parents as emotionally warmer and less rejecting.19 They are in

Maternal Paternal line with other surveys and interviews of CCS9,15 and mirror parents'
statements about what they perceive as helpful parenting styles in
F P η2 F P η2
the face of childhood cancer.30
Emotional warmth
We add to previous research by showing that the subjective mem-
Sex 28.169 <.001 0.009 58.124 <.001 0.020 ories of ambition and overprotection were affected in different ways.
Group 60.173 <.001 0.020 103.236 <.001 0.034 Ours is the first study using the EMBU in a large CCS sample with this
Age 25.578 <.001 0.009 15.397 <.001 0.005 approach. However, as CCS remembered less maternal ambition and
Sex × group 0.143 .706 0.000 0.122 .727 0.000 more maternal overprotection than the general population, the single

Rejection/punishment items' mean scores might cancel each other out when calculating the
sum score. With regard to maternal control/overprotection, this was
Sex 6.448 .011 0.002 6.886 .009 0.002
the case in our investigation. Concerning this scale's sum score, there
Group 10.238 .001 0.003 52.139 <.001 0.018
were no differences between CCS and the general population,
Age 3.772 .052 0.001 3.260 .071 0.001
mirroring results reported by Lehmann, Hagedoorn.19
Sex × group 0.132 .716 0.000 6.305 .012 0.002 Regarding fathers' control/overprotection, however, the whole
Control/overprotection sum score differed between CCS and the population. This finding con-
Sex 0.011 .917 0.000 1.915 .167 0.001 trasts previous research19 using a longer version of the same question-
Group 1.500 .221 0.001 17.826 <.001 0.006 naire. Thus, possible differences might be attributed to the different
Age 5.883 .015 0.002 9.548 .002 0.003 questionnaire version or sample characteristics (such as older age at

Sex × group 1.235 .267 0.000 0.470 .493 0.000


diagnosis, younger current age, or other nationality/sociocultural
environment).
Control (separately)
Further, we provide evidence that disease‐related variables, ie,
Sex 3.929 .048 0.001 23.855 <.001 0.008
radiotherapy and chemotherapy, are associated with recalled rearing
Group 66.991 <.001 0.022 104.317 <.001 0.034
behavior, ie, emotional warmth. Possibly, the most taxing treatment
Age 8.579 .003 0.003 11.342 .001 0.004 protocols gave rise to especially caring and loving parental behavior.
Sex × group 1.467 .226 0.000 1.801 .180 0.001 They might also have led to more situations in which the respective
Ambition (separately) parental behavior could be displayed. Thus, the findings suggest a
Sex 2.189 .139 0.001 11.124 .001 0.004 way in which parents might have tried to ameliorate their children's
Group 30.045 <.001 0.010 21.028 <.001 0.007 situation. The connection of therapy variables and emotional warmth
was only found for memories of maternal behavior, perhaps because
Age 1.064 .302 0.000 1.640 .200 0.001
mothers were more likely to be the ones staying at home/hospital
Sex × group 0.467 .494 0.000 0.119 .730 0.000
tending to the child whereas fathers were more likely to act as bread-
Note. Sex: men = 0, women = 1. Group: CCS = 0, population = 1. winners, although gender role behavior might slowly be changing.31,32

TABLE 3 Hierarchical regression analyses of recalled emotional warmth in childhood cancer survivors

Maternal Warmth Paternal Warmth

Final β B 95% CI B Final P ΔR2 R2 Final β B 95% CI B Final P ΔR2 R2

Block 1 0.043*** 0.041 0.039*** 0.037


Sex 0.094 0.285 0.089/0.481 .001 0.136 0.444 0.220/0.667 <.001
Age −0.094 −0.047 −0.065/−0.029 <.001 −0.102 −0.039 −0.060/−0.019 <.001
Block 2 0.004 0.044 0.000 0.036
Age at diagnosis −0.113 −0.040 −0.080/0.001 .057 −0.038 −0.014 −0.061/0.033 .554
Block 3 0.011** 0.053 0.003 0.036
Chemotherapy 0.077 0.339 −0.039/0.639 .027 0.049 0.239 −0.102/0.580 .169
Radiation 0.092 0.267 0.067/0.468 .009 0.032 0.102 −0.127/0.331 .381

Note. Sex: men = 0, women = 1. Chemotherapy: no = 0, yes = 1. Radiation: no = 0, yes = 1. Values for B and 95% CI B are taken from the model in which the
respective predictor was introduced.
1668 ERNST ET AL.

Similarly, differences between men and women regarding ambitious one item each) and to the specificity of our CCS sample. Due to the
and overprotective behavior might be traced back to gendered expec- long follow‐up times in our study, its results might not reflect the
tations of a child's individual capacities and vulnerabilities. Along these experiences of childhood cancer patients with shorter survival times.
lines, the experiences of childhood cancer survivors today might be Furthermore, they might not reflect the experiences of those long‐
different—on the one hand because of improved survival rates1 and term cancer survivors who did not respond to the study invitation.
on the other hand due to more liberal parenting styles.33 The absence of data assessed at the time of cancer diagnosis and
Lastly, the results caution against a reductionist categorization of treatment is another limitation. Retrospectively assessing parental
recalled parental rearing behavior as “positive” or “negative”: On the rearing behavior by querying the former child entails a number of
one hand, emotional warmth has been implicated as a powerful pro- caveats. Most likely, these internal conceptions have been shaped by
tective force, fostering resilience and adaptation. However, in combi- recurring experiences throughout development. As they depend on
nation with fearful overprotection, and more forgiving parenting the individual's subjective appraisal, they might be influenced by mood
behavior, CCS might encounter conflicts in navigating developmental or recent events. However, memories of parenting styles have shown
tasks.34 More longitudinal research is needed which links variables of to be stable across mood changes.38,39 Lastly, a limitation is the
the context of the experience of childhood cancer to well‐being later absence of data on the family constellation, eg, growing up in a one‐
in life in a meaningful way to test the clinical relevance of the small parent household or experiencing a divorce/separation.
group differences observed in the present study. The aim should be
to advance the understanding of resilience factors, to detect those
CCS who are at risk for unfavorable outcomes, and to offer 5 | CO NC LUSIO NS
adequate interventions to pediatric cancer patients, survivors, and
their families. The present study details particularities of parenting as recalled by
survivors of childhood cancer. It expands previous research by using
a quantitative approach to compare a large sample of adult long‐term
4.1 | Clinical implications survivors with a representative population sample. CCS remembered
more affectionate parenting than participants from the general popu-
The present results suggest that parenting in the context of childhood
lation. They also remembered more overprotection and less ambition.
cancer is more complex than just giving solace as cancer modulated
Our results speak to an adaptation of parents' rearing behavior in the
other parental behaviors as well. This finding can be helpful in guiding
face of an extremely taxing situation and shine a light on powerful
supportive care efforts during and after treatment. There is abundant
predictors of vulnerability and resilience over the life span.
evidence that parental behavior has far‐reaching mental health conse-
quences, so it should also be explored in the context of childhood can-
cer survivors' long‐term adaptation and coping. Especially discussing ACKNOWLEDGEMENTS
experiences of parents' overprotective behaviors could give insight We thank all former childhood cancer patients who underwent clinical
into survivors' individual struggles and decisions revolving around examination for this study, all participating and supporting medical
autonomy. Along these lines, more research is needed to link parent- centers, the study centers of the GPOH, the staff of the GHS,
ing styles with long‐term survivors' quality of life and other relevant and the staff of the treatment data retrieval team. The CVSS is
lived outcomes. funded by the German Research Foundation (DFG) (SP1381/2‐1&2,
Importantly, changes in parental behavior can indicate a way in FA1038/2‐1&2, WI3881/2‐1&2). PSYNA is funded by the German
which parents' troubles affect the child. Bearing in mind the high levels Cancer Aid (DKH) (70112165). P.S. Wild is funded by the Federal
of psychological distress among parents caring for childhood cancer Ministry of Education and Research (BMBF01EO1503).
patients, especially those undergoing intensive treatments,3,35 not
every parent might be able to offer their child the needed emotional
support. For example, depressed mothers have previously shown less CONFLIC T OF INT E RE ST
36
sensitivity towards their children and less observant caregiving. None. This work is part of the dissertation of the first author.
Routine screening and targeted interventions should be available in
order to detect and alleviate parents' distress. Ultimately, this will also
benefit pediatric cancer patients or long‐term survivors (who previ- DATA AVAILABILITY STATEMENT
ously showed increased susceptibility towards mental distress37).
The written informed consent of the study participants is not suitable
for public access to the data, and this concept was not approved by
4.2 | Study limitations the local data protection officer and ethics committee. Access to data
at the local database in accordance with the ethics vote is offered
Limitations pertain to the limited information available regarding pre- upon request at any time. Interested researchers make their requests
vious treatment, the brevity of the Recalled Parental Rearing Behavior to the principal investigators of the CVSS/PSYNA study (philipp.
Questionnaire (ie, that overprotection/ambition were assessed using wild@unimedizin‐mainz.de).
ERNST ET AL. 1669

ORCID 19. Lehmann V, Hagedoorn M, Gerhardt CA, et al. Memories of parent


behaviors and adult attachment in childhood cancer survivors. J Adol
Mareike Ernst https://orcid.org/0000-0003-4952-9717
Young Adult Oncol. 2017;6(1):134‐141.
20. Kaatsch P, Grabow D, Spix C. German Childhood Cancer Registry—
RE FE R ENC E S Annual Report 2016 (1980–2015). Mainz, Germany: Institute of
1. Smith MA, Altekruse SF, Adamson PC, Reaman GH, Seibel NL. Medical Biostatistics, Epidemiology and Informatics (IMBEI) at the
Declining childhood and adolescent cancer mortality. Cancer. University Medical Center of the Johannes Gutenberg University
2014;120(16):2497‐2506. Mainz; 2016.
2. Long KA, Marsland AL, Alderfer MA. Cumulative family risk predicts 21. Faber J, Wingerter A, Neu MA, et al. Burden of cardiovascular risk fac-
sibling adjustment to childhood cancer. Cancer. 2013;119 tors and cardiovascular disease in childhood cancer survivors: data
(13):2503‐2510. from the German CVSS‐study. Eur Heart J. 2018;39(17):1555‐1562.
3. Schepers SA, Sint Nicolaas SM, Maurice‐Stam H, Haverman L, Verhaak 22. Arbeitsgemeinschaft ADM‐Stichproben und Bureau Wendt. Das
CM, Grootenhuis MA. Parental distress 6 months after a pediatric can- ADM‐Stichprobensystem (Stand 1993). In: Gabler S, Hoffmeyer‐
cer diagnosis in relation to family psychosocial risk at diagnosis. Cancer. Zlotnik JHP, Krebs D, eds. Gewichtung in der Umfragepraxis. Opladen:
2018;124(2):381‐390. Westdeutscher Verlag; 1994:188‐202.
4. Greenzang KA, Cronin AM, Kang TI, Mack JW. Parental distress and 23. Wild PS, Zeller T, Beutel M, et al. The Gutenberg Health Study.
desire for information regarding long‐term implications of pediatric Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz.
cancer treatment. Cancer. 2018;124(23):4529‐4537. 2012;55(6‐7):824‐829.
5. Long KA, Marsland AL. Family adjustment to childhood cancer: a sys- 24. Petrowski K, Brähler E, Zenger M. The relationship of parental rearing
tematic review. Clin Child Fam Psychol Rev. 2011;14(1):57‐88. behavior and resilience as well as psychological symptoms in a repre-
6. Hiyoshi A, Montgomery S, Bottai M, Hoven EI. Trajectories of income sentative sample. Health Qual Life Outcomes. 2014;12(1):95.
and social benefits for mothers and fathers of children with cancer: a 25. Petrowski K, Schurig S, Schmutzer G, Brähler E. Parental rearing style
national cohort study in Sweden. Cancer. 2018;124(7):1492‐1500. and socio‐demography of married and cohabiting individuals in a rep-
7. Sisk BA, Kang TI, Goldstein R, DuBois JM, Mack JW. Decisional burden resentative German sample. J Fam Stud. 2016;25(2):116‐132.
among parents of children with cancer. Cancer. 2019;125(8): 26. Moon JR, Song J, Huh J, et al. The relationship between parental rear-
1365‐1372. ing behavior, resilience, and depressive symptoms in adolescents with
8. Theunissen JM, Hoogerbrugge PM, van Achterberg T, Prins JB, congenital heart disease. Frontiers Cardio Med. 2017;4:55.
Vernooij‐Dassen MJ, van den Ende CH. Symptoms in the palliative 27. Soper D. Free Statistics Calculators 2019 [Available from: https://
phase of children with cancer. Pediatr Blood Cancer. 2007;49(2): www.danielsoper.com/statcalc/default.aspx.
160‐165.
28. Myers R. Classical and modern regression with applications. 2nd ed. Bos-
9. Woodgate RL. Life is never the same: childhood cancer narratives. Eur J ton, MA: Duxbury; 1990.
Cancer Care (Engl). 2006;15(1):8‐18.
29. Cohen J. A power primer. Psychol Bull. 1992;112(1):155‐159.
10. Hillman KA. Comparing child‐rearing practices in parents of children
with cancer and parents of healthy children. J Pediatr Oncol Nurs. 30. Hinds PS, Oakes LL, Hicks J, et al. “Trying to be a good parent” as
1997;14(2):53‐67. defined by interviews with parents who made phase I, terminal care,
and resuscitation decisions for their children. J Clin Oncol.
11. Pelcovitz D, Libov BG, Mandel F, Kaplan S, Weinblatt M, Septimus A.
2009;27(35):5979‐5985.
Posttraumatic stress disorder and family functioning in adolescent can-
cer. J Trauma Stress. 1998;11(2):205‐221. 31. Yogman M, Garfield CF. Committee on psychosocial aspects of child
and family health. fathers' roles in the care and development of their
12. Norberg AL, Steneby S. Experiences of parents of children surviving
children: the role of pediatricians. Pediatrics. 2016;138(1).
brain tumour: a happy ending and a rough beginning. Eur J Cancer Care
(Engl). 2009;18(4):371‐380. 32. Clarke NE, McCarthy MC, Downie P, Ashley DM, Anderson VA.
Gender differences in the psychosocial experience of parents of
13. Patterson JM, Holm KE, Gurney JG. The impact of childhood cancer on
children with cancer: a review of the literature. Psychooncology.
the family: a qualitative analysis of strains, resources, and coping
2009;18(9):907‐915.
behaviors. Psychooncology. 2004;13(6):390‐407.
33. Meyer T. Der Wandel der Familie und anderer privater Lebensformen.
14. Chao CC, Chen SH, Wang CY, Wu YC, Yeh CH. Psychosocial adjust-
In: Geißler R, ed. Die Sozialstruktur Deutschlands. Springer: VS Verlag
ment among pediatric cancer patients and their parents. Psychiatry
für Sozialwissenschaften; 2014.
Clin Neurosci. 2003;57(1):75‐81.
34. Zebrack BJ. Psychological, social, and behavioral issues for young
15. Kars MC, Duijnstee MS, Pool A, van Delden JJ, Grypdonck MH. Being
adults with cancer. Cancer. 2011;117(10 Suppl):2289‐2294.
there: parenting the child with acute lymphoblastic leukaemia. J Clin
Nurs. 2008;17(12):1553‐1562. 35. Klassen AF, Klaassen R, Dix D, et al. Impact of caring for a child with
cancer on parents' health‐related quality of life. J Clin Oncol.
16. Schumacher J, Eisemann M, Brähler E. Rückblick auf die Eltern: Der
2008;26(36):5884‐5889.
Fragebogen zum erinnerten elterlichen Erziehungsverhalten (FEE).
Diagnostica. 1999;45(4):194‐204. 36. Field T. Postpartum depression effects on early interactions, parenting,
and safety practices: a review. Infant Behav Dev. 2010;33(1):1‐6.
17. Petrowski K, Paul S, Zenger M, Brähler E. An ultra‐short screening ver-
sion of the Recalled Parental Rearing Behavior questionnaire (FEE‐US) 37. Burghardt J, Klein E, Brahler E, et al. Prevalence of mental distress
and its factor structure in a representative German sample. BMC Med among adult survivors of childhood cancer in Germany—compared to
Res Methodol. 2012;12(1):169. the general population. Cancer Med. 2019;8(4):1865‐1874.
18. Kim DH, Chung NG, Lee S. The effect of perceived parental rearing 38. Gerlsma C, Das J, Emmelkamp PMG. Depressed patients' parental rep-
behaviors on health‐related quality of life in adolescents with leukemia. resentations: stability across changes in depressed mood and
J Pediatr Oncol Nurs. 2015;32(5):295‐303. specificity across diagnoses. J Affect Disord. 1993;27(3):173‐181.
1670 ERNST ET AL.

39. Richter J, Eisemann M. Stability of memories of parental rearing among


psychiatric inpatients: a replication based on EMBU subscales. Psycho- How to cite this article: Ernst M, Brähler E, Klein EM, et al.
pathology. 2001;34(6):318‐325.
Parenting in the face of serious illness: Childhood cancer
survivors remember different rearing behavior than the
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