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Ziel der Studie ist es, die Erfahrungen von Kindern mit Geschlechtsdysphorie/Geschlechtsinkongruenz (GD/GI) und ihrer Eltern mit dem Gesundheitswesen in Deutschland zu beschreiben. Die Erkenntnisse sollen die Versorgung und das Beratungsangebot für Betroffene verbessern und sind in die Erstellung neuer S3-Leitlinien „Geschlechtsinkongruenz und Geschlechtsdysphorie im Kindes- und Jugendalter: Diagnostik und Behandlung“¹ eingeflossen. Insgesamt wurden 78 Betroffene, 35 Kinder, Jugendliche und junge Erwachsene (6-21 Jahre) mit GD/GI sowie 33 Mütter und 10 Väter befragt. Ausgewertet wurden 17 semistrukturierte Einzelinterviews und fünf Gruppeninterviews. Viele der Befragten erlebten fachlich unzureichend ausgebildete Ärzt/innen undTherapeut/innen und monate- oder jahrelangeWartezeiten. Eine trans* Identität, insbesondere bei kleineren Kindern und ihren Eltern, wurde von Behandelnden oft als vorübergehende Idee des Kindes abgetan oder den Eltern unterstellt, sich diese nur einzubilden. Als Expert/innen in eigener Sache fanden trans*idente Kinder, Jugendliche junge Erwachsene und ihre Eltern nur selten Gehör. Empfehlungen für eine affirmative Versorgung von trans* Kindern und Jugendlichen werden formuliert.
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.
Persistent feelings of gender dysphoria (GD) are accompanied by distress and body dissatisfaction in most clinically referred adolescents and adults. Transition-related medical interventions (e.g., puberty suppression, hormones, or surgery) may alleviate body dissatisfaction. The aim of the present cross-sectional study was to compare multidimensional body image across clinically referred adolescents and adults undergoing different transition-related medical interventions. Two clinical samples of adolescents (n = 82) and adults (n = 120) referred to specialized departments of four different transgender health services in Germany participated in the study. In total, 202 individuals from the female-to-male (FtM individuals) and male-to-female (MtF individuals) spectrum aged 14-74 years were included at different stages of their transition. Four scales assessing multidimensional aspects of body image (measured by the Body Image Assessment Questionnaire, FBeK) were compared across three groups: sample, gender, and medical interventions (while controlling for age and treatment duration). The results indicated less favorable body image scores compared with the norm in both adolescents and adults with GD. Individuals who had undergone transition-related medical interventions presented a significantly better body image on two of the four scales. Differences according to gender and age were also present. These findings suggest that medical interventions, especially gender-affirming hormones and surgery, are generally beneficial to the body image in individuals with GD. However, not all of the less favorable outcomes in multidimensional body image were positively influenced by the treatment conditions and may thus benefit from additional integrative counseling before and during transition.
Minor Children of Palliative Patients: A Systematic Review of Psychosocial Family Interventions
(2012)
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.
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.
Children of a parent having cancer are at greater risk to develop mental health problems. Aim is to investigate specific psychosocial care for children having a parent with cancer, as well as to characterize and assess utilization and needs of affected minor children. Employees of institutions in Germany supplying psychosocial care to families with a parent having cancer were surveyed, using a semi-structured interview (n = 29). Specific psychosocial care for affected children is limited and heterogeneous in Germany. Regarding different distress stages of those families, the situation could be interpreted as eligible. However, this primarily reflects the low quality assurance of care. Results suggest that in addition to preventive care needs of children having a parent with cancer, increased needs exist in specific risk constellations, like in single parent families.
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.
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.