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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.
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.
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.
In Germany, the situation of health care services for children and adolescents with gender dysphoria is insufficient. In 2006 a specialized multiprofessional outpatient clinic was founded at the University Medical Center Hamburg-Eppendorf. Goals were improvement of health services for gender dysphoric children, development of treatment concepts, and gain of knowledge through research. After finishing a thorough interdisciplinary assessment an individualized, case-by-case treatment starts. Besides psychotherapy an interdisciplinary treatment (e. g. puberty suppression and cross-sex hormones) is provided if indicated. During childhood a watchful waiting and carefully observing attitude is necessary. If a marked increase of gender dysphoria occurs during the first phases of puberty development, puberty suppression and later cross sex-hormones might be indicated.
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.
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.
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.
Parental cancer: factors associated with children's psychosocial adjustment - a systematic review
(2012)
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.
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.
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.
Merkmale von Kindern und Jugendlichen mit Geschlechtsdysphorie in der Hamburger Spezialsprechstunde
(2014)
Given the increasing demand for counselling in gender dysphoria in childhood in Germany, there is a definite need for empirical data on characteristics and developmental trajectories of this clinical group. This study aimed to provide a first overview by assessing demographic characteristics and developmental trajectories of a group of gender variant boys and girls referred to the specialised Gender Identity Clinic in Hamburg. Data were extracted from medical charts, transcribed and analysed using qualitative content analysis methods. Categories were set up by inductive-deductive reasoning based on the patients' parents' and clinicians' information in the files. Between 2006 and 2010, 45 gender variant children and adolescents were seen by clinicians; 88.9% (n = 40) of these were diagnosed with gender identity disorder (ICD-10). Within this group, the referral rates for girls were higher than for boys (1:1.5). Gender dysphoric girls were on average older than the boys and a higher percentage of girls was referred to the clinic at the beginning of adolescence (> 12 years of age). At the same time, more girls reported an early onset age. More girls made statements about their (same-sex) sexual orientation during adolescence and wishes for gender confirming medical interventions. More girls than boys revealed self-mutilation in the past or present as well as suicidal thoughts and/or attempts. Results indicate that the presentation of clinically referred gender dysphoric girls differs from the characteristics boys present in Germany; especially with respect to the most salient age differences. Therefore, these two groups require different awareness and individual treatment approaches.
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.
UNLABELLED BACKGROUND Parental palliative disease is a family affair, however adolescent's well-being and coping are still rarely considered. The objectives of this paper were a) to identify differences in psychosocial adjustment and health-related quality of life (HRQoL) among adolescents and young adults with parents suffering from palliative cancer or cancers in other disease stages, b) to relate psychosocial adjustment and health-related quality of life to adolescent coping, and c) to explore significant mediator and predictor variables. METHODS Cross-sectional data were derived from a multi-site research study of families before child-centered counselling. N=86 adolescents and young adults were included, their mean age 13.78 years (sd 2.45), 56% being female. Performed analyses included ANCOVA, multiple linear regression, and mediation analysis. RESULTS Adolescents with parents suffering from palliative cancers reported significantly less total psychosocial problems, and better overall HRQoL. There were no significant group differences regarding coping frequency and efficacy. Our set of coping items significantly mediated the effect of parental disease stage on psychosocial problems and HRQoL. Further, parental disease status and general family functioning predicted psychosocial problems (R2adj =.390) and HRQoL (R2adj =.239) best. CONCLUSION The study indicates distress among adolescents throughout the entire parental disease process. Our analysis suggests that counselling services could offer supportive interventions which focus particularly on adolescent coping as well as family functioning.
There is still so much ahead of us - Family functioning in families of palliative cancer patients
(2013)
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.
The purpose of this study was the analysis of psychological distress and health-related quality of life (HRQoL) of parents with minor children during curative resp. palliative treatment.Cross-sectional design with a sample of N=89 parent dyads. Dyadic analysis of demographic, illness and family variables via mixed linear models.Patients and healthy partners indicated psychological distress on different subscales. Intradyadic correlations were small-moderate. Most important predictors of psychological distress and HRQoL were treatment stadium, gender, family functioning, and employment status.Dependent on demographic variables, psychooncological support was evident mainly for parents in palliative care and for families with dysfunctional functioning.
Irrespective of their well-known increased risk for mental health problems, children of somatically ill parents are a clinically underserved as well as under-researched group. In this article, the authors introduce the epidemiologic and clinical relevance of this topic and present a theoretical framework for understanding the sequelae of a serious parental illness on minor-age children, based on family dynamics and developmental concepts. This is followed by a comprehensive review of current empirical studies in this field, with a special emphasis on results from a transnational European collaborative study (COSIP = Children of Somatically Ill Parents), which was coordinated by the last author. The most important recommendations from intervention concepts published to date are summarized. Some outlooks for clinical practice as well as future research are presented.