Sozialwesen (SW)
OBJECTIVES Children of cancer patients have an increased risk for developing emotional problems. While psychosocial cancer counselling services are available all over the country, it is unclear if parents seek for help and if specific approaches for families are offered. METHODS A survey was made of outpatient cancer counselling services in Germany (n=228). The response rate was 56%. Descriptive and content analyses of the data have been used. RESULTS Providers estimate that 55% of their patients are between 18 and 55 years with 18% of them having minor children. However, only 53% do regularly ask their patients if they have minor children. Family- or child-settings are not provided regularly. Over 60% of providers would welcome special courses on this subject. CONCLUSION Although psychosocial care of minor children is mentioned in outpatient psychosocial cancer counselling guidelines, children are not included regularly. A stronger emphasis on this topic in further education has to be made.
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.
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.
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.
Mental Stress and Health-Related Quality of Life in Adolescents with Gender Dysphoria Although the level of mental stress in adolescents with gender dysphoria is found to be generally high in many studies, differences have been shown between samples of gender dysphoria clinics for adolescents in different countries. However, a comparison within the German speaking area is lacking. In this article we compared samples of gender dysphoria clinics from Munster (Germany) and Zurich (Switzerland) and tested potential correlates of mental stress using quantitative methods. Subsequently, we interviewed clients from both clinics regarding mental stressors and protective factors. There were no quantitative differences in the level of mental stress of clients between Munster and Zurich, whereas health-related quality of life was significantly higher in Munster. Problems in physical well-being and school environment were the strongest correlates of mental stress. This reflects in the interviews, too, in addition to further related factors reported. We conclude that physical well-being and inclusion at school should be addressed with special emphasis in counseling or treatment of adolescents with gender dysphoria to counter the in average high levels of mental stress. Zusammenfassung Das Ausmaß psychischer Auffälligkeiten bei Jugendlichen mit Geschlechtsdysphorie wird in vielen Studien als hoch beschrieben, unterscheidet sich jedoch in den Inanspruchnahmepopulationen verschiedener Spezialambulanzen für Jugendliche mit Geschlechtsdysphorie. Bislang hat kein Vergleich innerhalb des deutschsprachigen Raums stattgefunden. In diesem Beitrag werden die Inanspruchnahmestichproben der Spezialzentren in Münster und Zürich mit quantitativen Methoden verglichen sowie Korrelate von psychischen Auffälligkeiten geprüft. Anschließend führten wir Interviews mit Klient/innen1 der Spezialambulanzen hinsichtlich psychischer Belastungen und Schutzfaktoren durch. Es zeigten sich im quantitativen Vergleich der Zentren keine Unterschiede in den psychischen Auffälligkeiten zwischen Münster und Zürich, während sich die gesundheitsbezogene Lebensqualität in Münster als signifikant höher erwies als in Zürich. Als stärkste Korrelate psychischer Belastung konnten Probleme im körperlichen Wohlbefinden sowie im schulischen Umfeld identifiziert werden. Dies spiegelte sich auch in den qualitativen Interviews wider, in denen weitere assoziierte Faktoren benannt wurden. Wir schlussfolgern, dass das körperliche Wohlbefinden und die schulische Integration in der Beratung bzw. Behandlung von Jugendlichen mit Geschlechtsdysphorie besonders berücksichtigt werden sollten, um der im Schnitt hohen psychischen Auffälligkeiten entgegenzuwirken.
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.
Children of cancer patients are at risk for developing psychological symptoms. The parental appraisal of the child's psychological condition is a key variable for the utilization of child-centred psychosocial services. This study aimed at the systematic analysis of parental appraisals of changes in the emotional condition or behaviour of their children. We conducted an epidemiologic survey with a sample size of 1,809 patients with different cancer diagnoses, giving information about 2,581 children aged 21 years or younger at time of diagnosis. Quantitative information on children's distress during the disease and on changes in psychological condition or behaviour and qualitative information on the kind of changes were analysed. About half of the children were considered to be psychologically strongly affected during the disease. For about 25 % negative changes in psychological condition or behaviour are reported, positive changes are reported for 20 % of the children. Negative changes are most frequently described in young children (up to five years), positive changes are most frequently described in young adults (18 to 21 years). The results indicate that from the cancer parent's view many children are substantially distressed. Thus, the implementation of additional preventive psychosocial services seems reasonable and necessary.
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.
Air strikes on Hamburg in 1943 (Operation Gomorrha) were a historical turning point and had a deep impact on both cityscape and history of Hamburg. Little is known about intraindividual and transgenerational consequences as well as its interaction with societal and historical processes. Aiming at closing this gap interviews with witnesses, their children and grandchildren, as well as the whole family, were conducted in the context of an interdisciplinary research project. Based on the example of an interview with a at the time of the Operation Gomorrha eleven years old witness, her daughter, and grandson the biographical localisation of war experiences and transgenerational transmission will be explained and discussed.
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.