@article{ErnstBeierleinRomeretal.2013,
  author    = {Ernst, Johanna Christine and Beierlein, Volker and Romer, Georg and M{\"o}ller, Birgit and Koch, Uwe and Bergelt, Corinna},
  title     = {Use and need for psychosocial support in cancer patients: a population-based sample of patients with minor children},
  series = {Cancer},
  volume    = {119},
  journal   = {Cancer},
  doi       = {10.1002/cncr.28021},
  pages     = {2333 -- 2341},
  year      = {2013},
  abstract  = {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.},
  subject      = {Adult},
  language  = {en}
}
@article{InhesternBeierleinBultmannetal.2017,
  author    = {Inhestern, Laura and Beierlein, Volker and Bultmann, Johanna Christine and M{\"o}ller, Birgit and Romer, Georg and Koch, Uwe and Bergelt, Corinna},
  title     = {Anxiety and depression in working-age cancer survivors: a register-based study},
  series = {BMC cancer},
  volume    = {17},
  journal   = {BMC cancer},
  doi       = {10.1186/s12885-017-3347-9},
  pages     = {347},
  year      = {2017},
  abstract  = {BACKGROUND Anxiety and depression can be a long-term strain in cancer survivors. Little is known about the emotional situation of cancer survivors who have to deal with work- and family-related issues. The purpose of this study was to investigate anxiety and depression in working-age cancer survivors and associated factors. METHODS A register-based sample of 3370 cancer survivors (25 to 55 years at time of diagnosis) diagnosed up to six years prior to the survey was recruited from two German cancer registries. Demographic and medical characteristics as well as self-reported measures were used. RESULTS Overall, approximately 40\% of the survivors reported moderate to high anxiety scores and approximately 20\% reported moderate to high depression scores. Compared to the general population, working-age cancer survivors were more anxious but less depressed (p < .001). Subgroups with regard to time since diagnosis did not differ in anxiety or depression. Anxiety and depression in cancer survivors were associated with various variables. Better social support, family functioning and physical health were associated with lower anxiety and depression. CONCLUSIONS Overall, we found higher anxiety levels in cancer survivors of working-age than in the general population. A considerable portion of cancer survivors reported moderate to high levels of anxiety and depression. The results indicate the need for psychosocial screening and psycho-oncological support e.g. in survivorship programs for working-age cancer survivors. Assessing the physical health, social support and family background might help to identify survivors at risk for higher emotional distress.},
  subject      = {Adaptation},
  language  = {en}
}
@article{InhesternBultmannBeierleinetal.2016,
  author    = {Inhestern, Laura and Bultmann, Johanna C. and Beierlein, Volker and M{\"o}ller, Birgit and Romer, Georg and Muriel, Anna C. and Moore, Cynthia W. and Koch, Uwe and Bergelt, Corinna},
  title     = {Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children},
  series = {Psycho-oncology},
  volume    = {25},
  journal   = {Psycho-oncology},
  doi       = {10.1002/pon.4049},
  pages     = {1092 -- 1098},
  year      = {2016},
  abstract  = {OBJECTIVE Although cancer patients with minor children have become more of a focus of psycho-oncological research, little is known about specific parenting concerns. Instruments to assess the concerns and worries of parents with cancer are rare. The Parenting Concerns Questionnaire (PCQ) addresses this issue. We analyzed parenting concerns in cancer survivors and evaluated the German version of the PCQ. METHODS A total of 1416 cancer survivors with minor and young adult children (≤21 years) were recruited in a register-based study. Descriptive analyses as well as reliability and validity analyses were conducted. We performed a confirmatory factorial analysis of the factor structure proposed by the authors of the original version on the PCQ. RESULTS Seventy-three percent of the cancer survivors were women, average age was 47.5 years (SD 5.9). Mean time since diagnosis was 44 months (SD 23.4). Between 18 and 31\% of survivors reported that they were concerned about their children. The PCQ proved to be a reliable and valid instrument showing medium correlations with standardized measures in expected directions and discriminating between survivors with and without use of psychosocial support services. The factor structure was supported by the confirmatory factorial analysis. CONCLUSIONS Assessing parenting concerns gives an additional insight into the situation of parents with cancer. In our sample of cancer survivors, we identified one out of three survivors being concerned regarding the impact of their illness on their children. The PCQ can be considered as a valid and reliable instrument with regard to identifying concerned parents with cancer. Copyright © 2015 John Wiley \& Sons, Ltd.},
  subject      = {Adult},
  language  = {en}
}
@article{InhesternBultmannBeierleinetal.2016,
  author    = {Inhestern, Laura and Bultmann, Johanna Christine and Beierlein, Volker and M{\"o}ller, Birgit and Romer, Georg and Koch, Uwe and Bergelt, Corinna},
  title     = {Understanding parenting concerns in cancer survivors with minor and young-adult children},
  series = {Journal of psychosomatic research},
  volume    = {87},
  journal   = {Journal of psychosomatic research},
  doi       = {10.1016/j.jpsychores.2016.05.008},
  pages     = {1 -- 6},
  year      = {2016},
  abstract  = {OBJECTIVE Parents with cancer are concerned about the impact of their disease on their children. However, parenting concerns and associated factors in cancer survivors have not previously been analyzed. The purpose of this study is to examine parenting concerns and to test a path model for understanding parenting concerns in cancer survivors. METHODS In a cross-sectional study, a total of 1416 parents with cancer (mean age 47.5years, 74\% women) having minor or young-adult children were recruited through two cancer registries. Parenting concerns were assessed using the Parenting Concerns Questionnaire. Structural equation modeling (SEM) was used to analyze the associations between social support, parenting confidence, emotional distress, family functioning and parenting concerns. RESULTS Mothers reported higher total parenting concerns than fathers (p<0.001). We observed strong effects of emotional distress and parenting confidence on parenting concerns. Family dysfunctioning was associated with lower concerns. An indirect association between social support and parenting concerns was identified. CONCLUSION Parenting concerns in cancer survivors display the need for interventions and after care programs that focus on affected families with minor and young adult children. The results of the structural path model illustrate the associations between psychological and interactional factors. Supporting parents with cancer in their parenting confidence and strengthen social support and family functioning may not only reduce the long-term burden on the parents themselves but also the burden on the entire family.},
  subject      = {Adolescent},
  language  = {en}
}
@article{InhesternBultmannBeierleinetal.2017,
  author    = {Inhestern, Laura and Bultmann, Johanna Christine and Beierlein, Volker and M{\"o}ller, Birgit and Romer, Georg and Koch, Uwe and Bergelt, Corinna},
  title     = {Elterliche Sorgen und psychische Belastung bei krebskranken Eltern mit minderj{\"a}hrigen und jungerwachsenen Kindern},
  series = {Psychotherapie, Psychosomatik, medizinische Psychologie},
  volume    = {67},
  journal   = {Psychotherapie, Psychosomatik, medizinische Psychologie},
  doi       = {10.1055/s-0043-110139},
  pages     = {279 -- 287},
  year      = {2017},
  abstract  = {Background Aim of the study was to analyze parenting concerns in cancer survivors and to identify covariats for parenting concerns. Method In a cross-sectional epidemiological sample of cancer survivors with minor children (n=1416) demographic and disease-related variables and psychological distress (HADS) were assessed. Parenting concerns were assessed using the Parenting Concerns Questionnaire (PCQ). The instrument covers the 3 subscales concerns about the 'practical impact' of the disease on the children, about the 'emotional impact' and concerns about the 'co-parent'. Results 73\% of survivors were female; mean age was 47.5 years (SD 5.9). 24\% to 71\% of patients reporting parenting concerns showed normal levels of anxiety and depression. We identified living alone, younger age of the youngest child, higher tumor stage and suffering from a comorbidity as significantly associated with parenting concerns in all subscales of the PCQ. Low socio-economic status was found to be significantly associated with parenting concerns regarding the emotional and practical impact of the disease. Being a mother was associated with concerns in the subscale co-parent. Discussion Parents with cancer not only suffer from psychological distress but also from parenting concerns about the impact of their disease on their children. Psychological support services should broach the issue of parenting concerns. Families at risk should be identified to allocate tailored support. Hintergrund Ziel der dargestellten Untersuchung ist es, elterliche Sorgen von Krebs{\"u}berlebenden zu untersuchen und Kovariaten dieser spezifischen Belastungen zu identifizieren. Material \& Methoden In einer epidemiologischen Stichprobe von n=1416 an Krebs erkrankten Eltern wurden soziodemografische und medizinische Merkmale sowie die psychische Belastung der Eltern (HADS) erhoben. Elterliche Sorgen wurden mit dem Parenting Concerns Questionnaire (PCQ) erhoben, der die Subskalen Sorgen um die ‚praktischen Auswirkungen' der Erkrankung auf die Kinder, ‚emotionale Auswirkungen' auf die Kinder und Sorgen in Bezug auf den ‚Co-Elternteil' umfasst. Ergebnisse 73\% der Krebs{\"u}berlebenden sind Frauen, das durchschnittliche Alter liegt bei 47,5 Jahren (SD 5,9). Zwischen 24\% und 71\% der Patienten mit elterlichen Sorgen zeigen in den Skalen der HADS unauff{\"a}llige Werte. Alleinleben, j{\"u}ngeres Alter des j{\"u}ngsten Kindes, ein h{\"o}heres Tumorstadium und das Vorhandensein einer weiteren k{\"o}rperlichen Erkrankung sind mit Sorgen in allen 3 Subskalen des PCQ positiv assoziiert. Ein niedriger Sozialstatus konnte als Kovariate f{\"u}r elterliche Sorgen auf emotionaler Ebene und auf praktischer Ebene identifiziert werden. Weibliches Geschlecht ist assoziiert mit Sorgen auf der Subskala Co-Elternteil. Diskussion Betroffene Eltern sind neben der allgemeinen psychischen Belastung durch die Erkrankung auch durch Sorgen um ihre Kinder belastet. Psychologische Unterst{\"u}tzungsangebote f{\"u}r krebskranke Eltern sollten auch spezifische elterliche Sorgen thematisieren. Eltern mit Risikokonstellationen f{\"u}r eine erh{\"o}hte Belastung sollten besonders ber{\"u}cksichtigt werden, um bedarfsgerecht Unterst{\"u}tzung anbieten zu k{\"o}nnen.},
  subject      = {Adolescent},
  language  = {de}
}
@article{KrattenmacherKuehneFuehreretal.2013,
  author    = {Krattenmacher, Thomas and K{\"u}hne, Franziska and F{\"u}hrer, Daniel and Beierlein, Volker and Br{\"a}hler, Elmar and Resch, Franz and Klitzing, Kai V. and Flechtner, Hans-Henning and Bergelt, Corinna and Romer, Georg and M{\"o}ller, Birgit},
  title     = {Coping skills and mental health status in adolescents when a parent has cancer: a multicenter and multi-perspective study},
  series = {Journal of psychosomatic research},
  volume    = {74},
  journal   = {Journal of psychosomatic research},
  doi       = {10.1016/j.jpsychores.2012.10.003},
  pages     = {252 -- 259},
  year      = {2013},
  abstract  = {OBJECTIVE Parental cancer increases the risk of psychosocial problems in adolescents. We investigated the frequency and efficacy of adolescents' coping strategies and relationships between those strategies and mental health status. Age and gender differences regarding coping and mental health were also investigated. METHODS In total, 214 adolescents from 167 families participated in a cross-sectional, multicenter study. All participants were recruited from standard oncological care. Among the participants, 52\% utilized a child-centered intervention program. Adolescents' coping skills were measured using KIDCOPE. Mental health status was rated by adolescents and parents by the SDQ for symptomatology and the KIDSCREEN for well-being. RESULTS We found that 29\% of the adolescents showed emotional and behavioral problems. We found gender differences in mental health status but not in coping. Adolescents used a broad spectrum of coping strategies. Active problem-solving, distraction, acceptance, wishful thinking and seeking social support were the most frequently used coping strategies. The utilization of certain coping skills was mediated by their perceived efficacy. Problem-focused or approach-oriented coping strategies generally are associated with better mental health, while avoidance-oriented coping are associated with worse mental health. Emotion-focused coping was associated with both lower and higher mental health. CONCLUSION The strategies used by adolescents to cope with parental cancer are associated with their mental health. Problem-solving and approach-oriented coping strategies should be facilitated by psychological interventions regardless of age and gender. Age and gender differences in adolescents' mental health should be further investigated because these differences are not explained by differences in coping strategies.},
  subject      = {Adaptation},
  language  = {en}
}
@article{KrattenmacherKuehneFuehreretal.2012,
  author    = {Krattenmacher, Thomas and K{\"u}hne, Franziska and F{\"u}hrer, Daniel and Ernst, Johanna and Br{\"a}hler, Elmar and Herzog, Wolfgang and Klitzing, Kai and Flechtner, Hans-Henning and Bergelt, Corinna and Romer, Georg and M{\"o}ller, Birgit},
  title     = {Kinder krebskranker Eltern - elterliches Coping, famili{\"a}res Funktionsniveau und psychosoziale Anpassung der Kinder},
  series = {Praxis der Kinderpsychologie und Kinderpsychiatrie},
  volume    = {61},
  journal   = {Praxis der Kinderpsychologie und Kinderpsychiatrie},
  issn      = {0032-7034},
  doi       = {10.13109/prkk.2012.61.6.447},
  pages     = {447 -- 462},
  year      = {2012},
  abstract  = {Children exposed to parental cancer have an increased risk of mental health problems. However, the parental illness itself and its features do not predict children's psychological adjustment. Parent- and family-related factors are more predictive for children's well-being and the incidence of psychopathological symptoms, respectively. This study focuses on parental ways of coping with illness from both, the ill and healthy parent's perspective, and the relationship with family functioning and children's adjustment. Results show a significant impact of parental coping styles on children's health-related quality of life and psychopathological symptoms and, furthermore, that this relationship is mediated by aspects of family functioning. This study support the importance of family systems approaches. Implications for further studies and practical issues are discussed.},
  subject      = {Adaptation},
  language  = {de}
}
@article{BeierleinBultmannMoelleretal.2017,
  author    = {Beierlein, Volker and Bultmann, Johanna Christine and M{\"o}ller, Birgit and Klitzing, Kai and Flechtner, Hans-Henning and Resch, Franz and Herzog, Wolfgang and Br{\"a}hler, Elmar and F{\"u}hrer, Daniel and Romer, Georg and Koch, Uwe and Bergelt, Corinna},
  title     = {Measuring family functioning in families with parental cancer: Reliability and validity of the German adaptation of the Family Assessment Device (FAD)},
  series = {Journal of psychosomatic research},
  volume    = {93},
  journal   = {Journal of psychosomatic research},
  doi       = {10.1016/j.jpsychores.2016.11.007},
  pages     = {110 -- 117},
  year      = {2017},
  abstract  = {OBJECTIVE The concept of family functioning is gaining importance in psycho-oncology research and health care services. The Family Assessment Device (FAD) is a well-established measure of family functioning. Psychometric properties inherent in the German 51-item adaptation of the FAD are examined in different samples of families with parental cancer. METHODS Acceptance, reliability, and validity of FAD scales are analysed in samples from different study settings (N=1701 cancer patients, N=261 partners, N=158 dependent adolescent children 11 to 18years old). RESULTS Missing items in the FAD scales (acceptance) are rare for adults (<1.1\%) and adolescent children (<4.4\%). In samples of adults and older adolescents (15 to 18years), all FAD scales except for the Roles scale are significantly reliable (0.75≤Cronbach's α≤0.88). The scales correlate highly (0.46≤Pearson's r≤0.59) with the criterion satisfaction with family life (convergent validity), and have smaller correlations (0.16≤r≤0.49) with measures of emotional distress and subjective well-being (divergent validity). In most FAD scales, adults seeking family counselling report worse family functioning (0.24≤Cohen's d≤0.59) than adults in other samples with parental cancer (discriminative validity). CONCLUSION Overall, the German 51-item adaptation of the FAD reveals good acceptance, reliability, and validity for cancer patients and their relatives. Particularly the scale General Functioning shows excellent psychometric properties. The FAD is suitable in the assessment of families with parental cancer for adults and adolescents older than 11years.},
  subject      = {Adolescent},
  language  = {en}
}
@article{BergeltErnstBeierleinetal.2012,
  author    = {Bergelt, Corinna and Ernst, Johanna Christine and Beierlein, Volker and Inhestern, Laura and Holes, Sarah and M{\"o}ller, Birgit and Romer, Georg and Koch, Uwe},
  title     = {Reaktive Ver{\"a}nderungen in Befinden und Verhalten von Kindern bei elterlicher Krebserkrankung--Ergebnisse einer epidemiologischen Patientenbefragung},
  series = {Praxis der Kinderpsychologie und Kinderpsychiatrie},
  volume    = {61},
  journal   = {Praxis der Kinderpsychologie und Kinderpsychiatrie},
  issn      = {0032-7034},
  doi       = {10.13109/prkk.2012.61.6.378},
  pages     = {378 -- 395},
  year      = {2012},
  abstract  = {Children of cancer patients are at risk for developing psychological symptoms. The parental appraisal of the child's psychological condition is a key variable for the utilization of child-centred psychosocial services. This study aimed at the systematic analysis of parental appraisals of changes in the emotional condition or behaviour of their children. We conducted an epidemiologic survey with a sample size of 1,809 patients with different cancer diagnoses, giving information about 2,581 children aged 21 years or younger at time of diagnosis. Quantitative information on children's distress during the disease and on changes in psychological condition or behaviour and qualitative information on the kind of changes were analysed. About half of the children were considered to be psychologically strongly affected during the disease. For about 25 \% negative changes in psychological condition or behaviour are reported, positive changes are reported for 20 \% of the children. Negative changes are most frequently described in young children (up to five years), positive changes are most frequently described in young adults (18 to 21 years). The results indicate that from the cancer parent's view many children are substantially distressed. Thus, the implementation of additional preventive psychosocial services seems reasonable and necessary.},
  subject      = {Adolescent},
  language  = {de}
}
@article{BultmannBeierleinRomeretal.2014,
  author    = {Bultmann, Johanna Christine and Beierlein, Volker and Romer, Georg and M{\"o}ller, Birgit and Koch, Uwe and Bergelt, Corinna},
  title     = {Parental cancer: Health-related quality of life and current psychosocial support needs of cancer survivors and their children},
  series = {International journal of cancer},
  volume    = {135},
  journal   = {International journal of cancer},
  doi       = {10.1002/ijc.28905},
  pages     = {2668 -- 2677},
  year      = {2014},
  abstract  = {The presence of cancer and additional parental responsibilities can increase strain for individual patients as well as for their children. The construct of health-related quality of life (HRQL) is appropriate to measure a combination of physical, mental and social consequences as a result of disease. However, previous research has merely focused on symptom checklists. This study addresses the following questions: (i) does HRQL in children and their parents with cancer differ compared to the general population? (ii) Are there any variables that are associated with HRQL in children? (iii) What are current psychosocial support needs? A population-based survey of 976 survivors (<6 years post diagnosis) with minor children between 6 and 18 years (n = 1,449) was conducted with two German cancer registries. HRQL was assessed using SF-8 (survivors) and Kidscreen (children). The results were compared to normative populations, and predictors associated with HRQL in children were evaluated within a multilevel model. We found that the HRQL in children was better compared to the norm. Only children with support needs had worse HRQL. Older age, having a mother with cancer, having a parent not living together with a partner, and worse parental physical and mental health influenced HRQL in children. Illness characteristics were irrelevant. Even with a mean of 3.5 years after diagnosis, survivors had lower physical and mental health compared to the norm. Our findings reinforce the need for health professionals to pay attention to younger patients and their children. Even years after diagnosis, life might not have returned to normal.},
  subject      = {Adolescent},
  language  = {en}
}