TY - JOUR A1 - Bultmann, Johanna Christine A1 - Beierlein, Volker A1 - Romer, Georg A1 - Möller, Birgit A1 - Koch, Uwe A1 - Bergelt, Corinna T1 - Parental cancer: Health-related quality of life and current psychosocial support needs of cancer survivors and their children JF - International journal of cancer N2 - 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. KW - Adolescent KW - Adult KW - Child KW - Child Health Services KW - Cross-Sectional Studies KW - Female KW - Follow-Up Studies KW - Health Services Needs and Demand KW - Health Status KW - Humans KW - Male KW - Middle Aged KW - Needs Assessment KW - Neoplasms/psychology KW - Parents/psychology KW - Prognosis KW - Psychology KW - Quality of Life KW - Social Support KW - Stress KW - Psychological KW - Surveys and Questionnaires KW - Survivors/psychology Y1 - 2014 U6 - http://dx.doi.org/10.1002/ijc.28905 VL - 135 SP - 2668 EP - 2677 ER - TY - JOUR A1 - Bergelt, Corinna A1 - Ernst, Johanna Christine A1 - Beierlein, Volker A1 - Inhestern, Laura A1 - Holes, Sarah A1 - Möller, Birgit A1 - Romer, Georg A1 - Koch, Uwe T1 - Reaktive Veränderungen in Befinden und Verhalten von Kindern bei elterlicher Krebserkrankung--Ergebnisse einer epidemiologischen Patientenbefragung JF - Praxis der Kinderpsychologie und Kinderpsychiatrie N2 - 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. KW - Adolescent KW - Adult KW - Child KW - Child Behavior Disorders/diagnosis/epidemiology/psychology KW - Child of Impaired Parents/psychology KW - Child Reactive Disorders/diagnosis/epidemiology/psychology KW - Preschool KW - Cross-Sectional Studies KW - Female KW - Germany KW - Health Surveys KW - Humans KW - Infant KW - Male KW - Middle Aged KW - Neoplasms/epidemiology/psychology KW - Personality Assessment KW - Resilience KW - Psychological KW - Young Adult Y1 - 2012 U6 - http://dx.doi.org/10.13109/prkk.2012.61.6.378 SN - 0032-7034 VL - 61 SP - 378 EP - 395 ER - TY - JOUR A1 - Becker, Inga A1 - Auer, Matthias A1 - Barkmann, Claus A1 - Fuss, Johannes A1 - Möller, Birgit A1 - Nieder, Timo O. A1 - Fahrenkrug, Saskia A1 - Hildebrandt, Thomas A1 - Richter-Appelt, Hertha T1 - A Cross-Sectional Multicenter Study of Multidimensional Body Image in Adolescents and Adults with Gender Dysphoria Before and After Transition-Related Medical Interventions JF - Archives of sexual behavior N2 - 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. KW - Adolescent KW - Adult KW - Aged KW - Body Image/psychology KW - Cross-Sectional Studies KW - Female KW - Gender Dysphoria/psychology/therapy KW - Gender Identity KW - Germany KW - Hormones KW - Humans KW - Male KW - Middle Aged KW - Psychology KW - Sexual Maturation KW - Surveys and Questionnaires KW - Transgender Persons/psychology KW - Transsexualism/psychology/therapy KW - Young Adult Y1 - 2018 U6 - http://dx.doi.org/10.1007/s10508-018-1278-4 VL - 47 SP - 2335 EP - 2347 ER -