TY - JOUR A1 - Storck, Michael A1 - Christians, Gundula A1 - Möller, Birgit A1 - Dugas, Martin A1 - Soto-Rey, Iñaki T1 - Conducting a Multilingual Study Researching Traumatised Refugees Utilizing a Patient-Reported Outcome System JF - Studies in health technology and informatics N2 - 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. KW - Child KW - Electronic Health Records KW - Europe KW - Humans KW - Language KW - Multilingualism KW - Patient Reported Outcome Measures KW - Refugees/psychology Y1 - 2018 SN - 0926-9630 VL - 253 SP - 109 EP - 113 ER - TY - JOUR A1 - Ernst, Johanna Christine A1 - Beierlein, Volker A1 - Romer, Georg A1 - Möller, Birgit A1 - Koch, Uwe A1 - Bergelt, Corinna T1 - Use and need for psychosocial support in cancer patients: a population-based sample of patients with minor children JF - Cancer N2 - 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. KW - Adult KW - Anxiety Disorders/psychology KW - Child KW - Depressive Disorder/psychology KW - Family/psychology KW - Female KW - Germany KW - Health Services Needs and Demand KW - Humans KW - Male KW - Middle Aged KW - Neoplasms/psychology KW - Parenting/psychology KW - Registries KW - Social Support KW - Socioeconomic Factors Y1 - 2013 U6 - http://dx.doi.org/10.1002/cncr.28021 VL - 119 SP - 2333 EP - 2341 ER - TY - JOUR A1 - Inhestern, Laura A1 - Beierlein, Volker A1 - Bultmann, Johanna Christine A1 - Möller, Birgit A1 - Romer, Georg A1 - Koch, Uwe A1 - Bergelt, Corinna T1 - Anxiety and depression in working-age cancer survivors: a register-based study JF - BMC cancer N2 - 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. KW - Adaptation KW - Psychological KW - Adult KW - Anxiety/epidemiology/etiology/pathology/psychology KW - Cancer Survivors/psychology KW - Depression/epidemiology/etiology/pathology/psychology KW - Female KW - Humans KW - Male KW - Middle Aged KW - Neoplasms/complications/epidemiology/pathology/psychology KW - Quality of Life KW - Registries KW - Social Support Y1 - 2017 U6 - http://dx.doi.org/10.1186/s12885-017-3347-9 VL - 17 SP - 347 ER - TY - JOUR A1 - Inhestern, Laura A1 - Bultmann, Johanna C. A1 - Beierlein, Volker A1 - Möller, Birgit A1 - Romer, Georg A1 - Muriel, Anna C. A1 - Moore, Cynthia W. A1 - Koch, Uwe A1 - Bergelt, Corinna T1 - Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children JF - Psycho-oncology N2 - 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. KW - Adult KW - Adult Children/psychology KW - Anxiety/epidemiology/psychology KW - Child KW - Cross-Sectional Studies KW - Female KW - Germany/epidemiology KW - Humans KW - Male KW - Middle Aged KW - Neoplasms/epidemiology/psychology KW - Parent-Child Relations KW - Parenting KW - Parents/psychology KW - Psychometrics KW - Reproducibility of Results KW - Social Support KW - Surveys and Questionnaires KW - Survivors/psychology KW - Young Adult Y1 - 2016 U6 - http://dx.doi.org/10.1002/pon.4049 VL - 25 SP - 1092 EP - 1098 ER - TY - JOUR A1 - Inhestern, Laura A1 - Bultmann, Johanna Christine A1 - Beierlein, Volker A1 - Möller, Birgit A1 - Romer, Georg A1 - Koch, Uwe A1 - Bergelt, Corinna T1 - Understanding parenting concerns in cancer survivors with minor and young-adult children JF - Journal of psychosomatic research N2 - 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. KW - Adolescent KW - Adult KW - Adult Children/psychology KW - Child KW - Preschool KW - Comprehension KW - Cross-Sectional Studies KW - Female KW - Humans KW - Infant KW - Newborn KW - Male KW - Middle Aged KW - Neoplasms/epidemiology/psychology KW - Parent-Child Relations KW - Parenting/psychology KW - Social Support KW - Surveys and Questionnaires KW - Survivors/psychology KW - Young Adult Y1 - 2016 U6 - http://dx.doi.org/10.1016/j.jpsychores.2016.05.008 VL - 87 SP - 1 EP - 6 ER - TY - JOUR A1 - Inhestern, Laura A1 - Bultmann, Johanna Christine A1 - Beierlein, Volker A1 - Möller, Birgit A1 - Romer, Georg A1 - Koch, Uwe A1 - Bergelt, Corinna T1 - Elterliche Sorgen und psychische Belastung bei krebskranken Eltern mit minderjährigen und jungerwachsenen Kindern JF - Psychotherapie, Psychosomatik, medizinische Psychologie N2 - 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 Krebsüberlebenden 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 Krebsüberlebenden 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 unauffällige Werte. Alleinleben, jüngeres Alter des jüngsten Kindes, ein höheres Tumorstadium und das Vorhandensein einer weiteren körperlichen Erkrankung sind mit Sorgen in allen 3 Subskalen des PCQ positiv assoziiert. Ein niedriger Sozialstatus konnte als Kovariate für 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 Unterstützungsangebote für krebskranke Eltern sollten auch spezifische elterliche Sorgen thematisieren. Eltern mit Risikokonstellationen für eine erhöhte Belastung sollten besonders berücksichtigt werden, um bedarfsgerecht Unterstützung anbieten zu können. KW - Adolescent KW - Adult KW - Child KW - Preschool KW - Cost of Illness KW - Cross-Sectional Studies KW - Female KW - Humans KW - Male KW - Middle Aged KW - Neoplasms/psychology KW - Parenting KW - Parents/psychology KW - Social Support KW - Survivors KW - Young Adult Y1 - 2017 U6 - http://dx.doi.org/10.1055/s-0043-110139 VL - 67 SP - 279 EP - 287 ER - TY - JOUR A1 - Krattenmacher, Thomas A1 - Kühne, Franziska A1 - Ernst, Johanna A1 - Bergelt, Corinna A1 - Romer, Georg A1 - Möller, Birgit T1 - Parental cancer: factors associated with children's psychosocial adjustment - a systematic review JF - Journal of psychosomatic research N2 - 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. KW - Adaptation KW - Psychological KW - Child KW - Humans KW - Neoplasms/psychology KW - Parents/psychology KW - Social Adjustment Y1 - 2012 U6 - http://dx.doi.org/10.1016/j.jpsychores.2012.01.011 VL - 72 SP - 344 EP - 356 ER - TY - JOUR A1 - Krattenmacher, Thomas A1 - Kühne, Franziska A1 - Führer, Daniel A1 - Beierlein, Volker A1 - Brähler, Elmar A1 - Resch, Franz A1 - Klitzing, Kai V. A1 - Flechtner, Hans-Henning A1 - Bergelt, Corinna A1 - Romer, Georg A1 - Möller, Birgit T1 - Coping skills and mental health status in adolescents when a parent has cancer: a multicenter and multi-perspective study JF - Journal of psychosomatic research N2 - 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. KW - Adaptation KW - Psychological/classification/physiology KW - Adolescent KW - Adult KW - Age Factors KW - Aged KW - Child KW - Cross-Sectional Studies KW - Female KW - Humans KW - Male KW - Mental Disorders/epidemiology/etiology KW - Middle Aged KW - Neoplasms/psychology KW - Parents KW - Psychiatric Status Rating Scales Y1 - 2013 U6 - http://dx.doi.org/10.1016/j.jpsychores.2012.10.003 VL - 74 SP - 252 EP - 259 ER - TY - JOUR A1 - Kühne, Franziska A1 - Haagen, Miriam A1 - Baldus, Christiane A1 - Diareme, Stavroula A1 - Grether, Andrea A1 - Schmitt, Florence A1 - Stanescu, Dan A1 - Stöckl, Margit A1 - Thastum, Mikael A1 - Möller, Birgit A1 - Romer, Georg T1 - Implementation of preventive mental health services for children of physically ill parents: experiences in seven European countries and health care systems JF - General hospital psychiatry N2 - 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. KW - Adolescent KW - Child KW - Child Health Services KW - Child of Impaired Parents/psychology KW - Preschool KW - Counseling KW - Europe KW - Humans KW - Mental Health Services KW - Patient Satisfaction KW - Pilot Projects KW - Preventive Health Services/organization {\&} administration KW - Program Development KW - Qualitative Research KW - Surveys and Questionnaires Y1 - 2013 U6 - http://dx.doi.org/10.1016/j.genhosppsych.2012.10.005 VL - 35 SP - 147 EP - 153 ER - TY - JOUR A1 - Kuhlmann, Anna-Lena A1 - Romer, Georg A1 - Möller, Birgit T1 - „Wenn man sich so besser fühlt …“ JF - Praxis der Kinderpsychologie und Kinderpsychiatrie N2 - If One Feels Better Like That …. Adolescent Sibling Relationship in the Context of Transgender Development A transgender development in youth can influence the relationship of concerned youth and their siblings. While in most surveys, the focus lies on transgender adolescents, both sides shall be interviewed here to capture the situation of siblings and to relate the results. For this purpose, guide interviews with ten transgender adolescents and twelve of their siblings were analysed in accordance to Grounded Theory. In most cases, participants were satisfied with the sibling relationship. After the coming-out of the transgender adolescent they showed both positive and negative reactions that, however, changed to respect and acceptance by time without exception. Doubt, compassion and grief were short lived and often replaced by joy for the transgender adolescent. Transgender youth were mostly satisfied with the reaction of their sibling though the amount of support varied. The time of coming-out and transition often led to an improvement in sibling relationship, more closeness and family cohesion. In general, siblings seem to be immediately concerned by transgenderism in adolescence. In clinical practice, they should thus be included from the beginning. By taking into account their situation, negative developments can be prevented, and the sibling relationship become usable as a resource. Zusammenfassung Eine transidente Entwicklung im Jugendalter kann die Beziehung der Betroffenen und ihrer Geschwister beeinflussen. Während in den meisten Untersuchungen der Fokus eher auf den transidenten Jugendlichen liegt, wurden hier beide Seiten befragt, um die Situation der Geschwister zu erfassen und die Ergebnisse zueinander in Beziehung setzen zu können. Hierzu wurden Leitfaden-gestützte Interviews mit zehn transidenten Jugendlichen sowie zwölf ihrer Geschwister nach den Regeln der Grounded Theory ausgewertet. In den meisten Fällen zeigten sich die Teilnehmenden mit der Geschwisterbeziehung zufrieden. Auf das Coming-out des transidenten Jugendlichen zeigten die Geschwister positive wie negativen Reaktionen, die sich jedoch im Laufe der Zeit ausnahmslos zu Respekt und Akzeptanz wandelten. Zweifel, Mitleid und Trauer waren nur von kurzer Dauer und wurden oft durch Freude für den transidenten Adoleszenten ersetzt. Die transidenten Jugendlichen zeigten sich mit der Reaktion des Geschwisters grundsätzlich zufrieden, obwohl das Maß an Unterstützung unterschiedlich war. Die Zeit des Coming-out und der Transition führte häufig zu einer Verbesserung der Geschwisterbeziehung, mehr Nähe und familiärem Zusammenhalt. Insgesamt zeigte sich, dass die Geschwister bei einer Transidentität im Jugendalter unmittelbar mitbetroffen sind und daher im klinischen Alltag von Anfang an mit einbezogen werden sollten. Durch Berücksichtigung ihrer Situation kann negativen Entwicklungen vorgebeugt und die Geschwisterbeziehung als Ressource nutzbar werden. KW - Adolescent KW - Grief KW - Humans KW - Sibling Relations KW - Siblings/psychology KW - Surveys and Questionnaires KW - Transgender Persons/psychology Y1 - 2020 U6 - http://dx.doi.org/10.13109/prkk.2020.69.6.524 SN - 0032-7034 VL - 69 SP - 524 EP - 540 ER -