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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 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.
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)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
