@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{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} } @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{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{KrattenmacherKuehneErnstetal.2012, author = {Krattenmacher, Thomas and K{\"u}hne, Franziska and Ernst, Johanna and Bergelt, Corinna and Romer, Georg and M{\"o}ller, Birgit}, title = {Parental cancer: factors associated with children's psychosocial adjustment - a systematic review}, series = {Journal of psychosomatic research}, volume = {72}, journal = {Journal of psychosomatic research}, doi = {10.1016/j.jpsychores.2012.01.011}, pages = {344 -- 356}, year = {2012}, abstract = {OBJECTIVE Children of cancer patients have an increased risk of developing psychosocial problems. But not all children are alike vulnerable to this stressful event. Thus, knowledge of risk and protective factors is required to design specific diagnostic tools and interventions for this vulnerable population. This study aims to provide a review and methodological evaluation of current studies examining factors associated with children's psychosocial adjustment when a parent has cancer. METHODS Four databases were systematically searched for quantitative research articles examining associative factors of children's adjustment. Study characteristics were analyzed and methodological quality was assessed by two independent reviewers. RESULTS 28 studies examining associative factors in 2896 families were identified. The included studies used a broad range of instruments assessing children's adjustment. Most patients were female breast cancer patients with middle to high socio-economic status. The majority of included studies used correlational approaches and cross-sectional designs. None of the studies examined toddlers or assessed children's quality of life. Across studies with low to high quality, we found no evidence of illness-related factors, except worse disease status that was related to lower adjustment. Evidence from moderate to high quality studies suggest that better family functioning indicates better adjustment, whereas parent's depressive mood indicates worse adjustment of the children. Child-related factors were inconsistent. CONCLUSION Health professionals should pay attention to cancer patients' dependent children. In order to identify this at-risk population, parent's depressive mood and poor family functioning should be considered. Future studies should also assess children's quality of life and child-related factors.}, subject = {Adaptation}, language = {en} } @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{KrattenmacherKuehneHalverscheidetal.2014, author = {Krattenmacher, Thomas and K{\"u}hne, Franziska and Halverscheid, Susanne and Wiegand-Grefe, Silke and Bergelt, Corinna and Romer, Georg and M{\"o}ller, Birgit}, title = {A comparison of the emotional and behavioral problems of children of patients with cancer or a mental disorder and their association with parental quality of life}, series = {Journal of psychosomatic research}, volume = {76}, journal = {Journal of psychosomatic research}, doi = {10.1016/j.jpsychores.2013.11.020}, pages = {213 -- 220}, year = {2014}, abstract = {OBJECTIVE To compare the emotional and behavioral problems of children of patients suffering from cancer or a mental disorder and their association with parental quality of life. METHODS A total of 223 children from 136 families and their 160 parents were investigated from multiple perspectives in a cross-sectional study. The consistency of different adjustment reports between family members was examined. Through mixed models, the differences between parental HRQoL and the children's symptomatology were studied with regard to the type of parental illness. The prediction of children's adjustment through parental HRQoL was further examined. Additionally, gender and age of the children were considered. RESULTS Half of the children exhibited psychosocial problems. Gender and age differences were independent of the type of parental disease. In families with parental cancer, the reports of children's adjustment were more consistent between family members than in families where a parental mental disorder was present. We found differences in HRQoL between families with mentally ill parents and those with parental cancer patients. Specifically, the healthy partners of mentally ill parents showed worse HRQoL compared with healthy partners of cancer patients. Healthy parents' reduced HRQoL was associated with worse adjustment in their children, regardless of the type of parental illness, but this result was not found for ill parents. CONCLUSION Family members confronted with parental cancer or mental disorders are more burdened compared with those from the normal population, independently of the type of disease. Our results indicate that the type of a parental disease has no direct effect on children's adjustment. However, there are disease-specific effects on parental HRQoL, which are associated with children's adjustment.}, subject = {Adolescent}, language = {en} } @article{KuehneHaagenBaldusetal.2013, author = {K{\"u}hne, Franziska and Haagen, Miriam and Baldus, Christiane and Diareme, Stavroula and Grether, Andrea and Schmitt, Florence and Stanescu, Dan and St{\"o}ckl, Margit and Thastum, Mikael and M{\"o}ller, Birgit and Romer, Georg}, title = {Implementation of preventive mental health services for children of physically ill parents: experiences in seven European countries and health care systems}, series = {General hospital psychiatry}, volume = {35}, journal = {General hospital psychiatry}, doi = {10.1016/j.genhosppsych.2012.10.005}, pages = {147 -- 153}, year = {2013}, abstract = {OBJECTIVE Parental physical disease is a family issue, but families' minor children are seldom considered. The current study analyzed experiences with implementation of counseling for families with physically ill parents and minor children during a European multisite pilot project. METHOD Implementation protocols of seven European partner centers collaborating in a joint research project were analyzed by Mayring's qualitative content analysis. Both an inductive approach and a deductive approach were chosen. Satisfaction of families and therapists was considered based on information from three partner centers. RESULTS Satisfaction with counseling was rather high. Mentioned problems referred to aspects related to liaison partners, family-related aspects and physicians' concerns. Recommendations related to contacting families, liaising with other professions, implementing counseling together with a research project, and training. Results are integrated in the current dissemination literature. CONCLUSION Successful implementation was mostly determined by aspects of interdisciplinary cooperation and communication, perceived relative advantage and organizational premises. With regard to this kind of innovative child-centered family mental health services, top-down and bottom-up implementation strategies should be combined, and strategies of maintenance and sustainability should be considered from the very beginning.}, subject = {Adolescent}, language = {en} } @article{KuehneKrattenmacherBergeltetal.2013, author = {K{\"u}hne, Franziska and Krattenmacher, Thomas and Bergelt, Corinna and Beierlein, Volker and Herzog, Wolfgang and V Klitzing, Kai and Weschenfelder-Stachwitz, Heike and Romer, Georg and M{\"o}ller, Birgit}, title = {There is still so much ahead of us - Family functioning in families of palliative cancer patients}, series = {Families, systems \& health : the journal of collaborative family healthcare}, volume = {31}, journal = {Families, systems \& health : the journal of collaborative family healthcare}, doi = {10.1037/a0032274}, pages = {181 -- 193}, year = {2013}, abstract = {Adopting a systems approach, parental cancer has its impact on patients, spouses, and dependent children. The purpose of the current study was to examine family functioning dependent on parental disease stage and on family member perspective in families of cancer patients with adolescent children. The cross-sectional study was conducted within a German multisite research project of families before their first child-centered counseling encounter. The sample comprised individuals nested within N = 169 families. Analyses performed included analysis of covariance (ANCOVA) and intraclass correlation. Open answers were analyzed following quantitative content analysis procedures. Between 15\% and 36\% of family members reported dysfunctional general functioning scores. Parents indicated more dysfunctional scores on the Family Assessment Device scale Roles, and adolescents more dysfunctional Communication scores. Regarding assessment of family functioning, there was higher agreement in families with parents in a palliative situation. For adolescents with parents in palliation, incidents because of the disease tend to become more dominant, and spending time with the family tends to become even more important. As our study pointed out, parental cancer, and especially parental palliative disease, is associated with both perceived critical and positive aspects in family functioning. Supporting families in these concerns as well as encouraging perceptions of positive aspects are important components of psycho-oncological interventions for families with dependent children.}, subject = {Adolescent}, language = {en} } @article{MoellerBarkmannKrattenmacheretal.2014, author = {M{\"o}ller, Birgit and Barkmann, Claus and Krattenmacher, Thomas and K{\"u}hne, Franziska and Bergelt, Corinna and Beierlein, Volker and Ernst, Johanna and Br{\"a}hler, Elmar and Flechtner, Hans-Henning and Herzog, Wolfgang and Klitzing, Kai and F{\"u}hrer, Daniel and Resch, Franz and Romer, Georg}, title = {Children of cancer patients: prevalence and predictors of emotional and behavioral problems}, series = {Cancer}, volume = {120}, journal = {Cancer}, doi = {10.1002/cncr.28644}, pages = {2361 -- 2370}, year = {2014}, abstract = {BACKGROUND Children of patients with cancer are at increased risk for developing emotional and behavioral problems. This study explored the prevalence and predictors of emotional and behavioral problems in Children of cancer patients in a multisite research project. METHODS A cross-sectional sample of N = 235 families was recruited simultaneously in 5 university medical centers. The participants, including parents (N = 402) and children (N = 324; ages 11-21 years) completed standardized questionnaires. Emotional and behavioral problems in children were measured by the Strengths and Difficulties Questionnaire (SDQ). On the basis of previous research and using a mixed-model approach, child-, parent-, family- and cancer-related variables were examined in addition to socioeconomic status as potential predictors. Descriptive statistics and a multiple random coefficient model were used in the analyses. RESULTS Compared to norms, Children of cancer patients show increased mean levels of emotional and behavioral symptoms. The best predictor of emotional and behavioral problems from the perspectives of the child, the healthy parent, and the ill parent was general family dysfunction. Although family dysfunction was identified as the main predictor, the analysis revealed that the main part of variance was related to the individual child's level. CONCLUSIONS The results indicate that screening for child mental health problems and family dysfunction in oncological and psychosocial treatment units can identify the families most in need of psychosocial support. Psychological services need to be both family-oriented and child-centered and focus on family dysfunction to prevent mental health problems in children.}, subject = {Adolescent}, language = {en} } @article{MoellerSchreierLietal.2009, author = {M{\"o}ller, Birgit and Schreier, Herbert and Li, Alice and Romer, Georg}, title = {Gender identity disorder in children and adolescents}, series = {Current problems in pediatric and adolescent health care}, volume = {39}, journal = {Current problems in pediatric and adolescent health care}, doi = {10.1016/j.cppeds.2009.02.001}, pages = {117 -- 143}, year = {2009}, subject = {Adolescent}, language = {en} } @article{StorckChristiansMoelleretal.2018, author = {Storck, Michael and Christians, Gundula and M{\"o}ller, Birgit and Dugas, Martin and Soto-Rey, I{\~n}aki}, title = {Conducting a Multilingual Study Researching Traumatised Refugees Utilizing a Patient-Reported Outcome System}, series = {Studies in health technology and informatics}, volume = {253}, journal = {Studies in health technology and informatics}, issn = {0926-9630}, pages = {109 -- 113}, year = {2018}, abstract = {Approximately 300,000 asylum-seeking children arrived in Europe in 2015. The chance of experiencing a traumatic event is very high for fleeing children. Since the origin of the refugees is widespread, the languages spoken are diverse. Multilingual electronic patient-reported outcome systems (ePROs) can be used to gather medical data in a foreign language and display the results in the health professionals' language, which helps overcoming the language barrier. Utilizing such a system, a two-phase study aiming to screen refugee minors for potential mental health issues has started. Potential eligible participants are examined using questionnaires with good psychometric properties and cross-cultural applicability. To date, 75 minors and 21 of their relatives participated in the study, being German and Arabic the most desired languages for the electronic survey. Developing a system that provides multilingual questionnaires entails several drawbacks like a cumbersome translation process and dealing with writing directions. The proposed translation process and the ePRO can be re-used in similar studies.}, subject = {Child}, language = {en} }