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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.
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.
Children exposed to parental cancer have an increased risk of mental health problems. However, the parental illness itself and its features do not predict children's psychological adjustment. Parent- and family-related factors are more predictive for children's well-being and the incidence of psychopathological symptoms, respectively. This study focuses on parental ways of coping with illness from both, the ill and healthy parent's perspective, and the relationship with family functioning and children's adjustment. Results show a significant impact of parental coping styles on children's health-related quality of life and psychopathological symptoms and, furthermore, that this relationship is mediated by aspects of family functioning. This study support the importance of family systems approaches. Implications for further studies and practical issues are discussed.
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.
Minor Children of Palliative Patients: A Systematic Review of Psychosocial Family Interventions
(2012)
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.
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.
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.
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.
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.
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.
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.