Addressing gaps and enhancing experiences in support services for families of pediatric cancer survivors.

BACKGROUND: Childhood cancer's enduring challenges extend beyond primary therapy. Diverse medical and psychosocial services are available to assist families in follow-up care. This interview study sought to gain a thorough understanding of family motives, satisfaction levels, and barriers to utilization. METHODS: The design of this cross-sectional study involves a qualitative content analysis of semi-structured interviews. We interviewed parents of minor cancer survivors within the first 5 years after primary treatment. RESULTS: Survivors readily accessed medical support services when necessary. While parents expressed overall satisfaction with the available services, there was a notable gap in their knowledge regarding appropriate psychosocial and family-orientated services. Barriers to access included geographical distances, time constraints, and the absence of childcare options. CONCLUSION: There are familial challenges and burdens that fall outside the scope of conventional care services. Tailoring services to family-centered needs, providing more information and easier access to interventions might help to reduce barriers. IMPACT: Existing need notwithstanding, families did not frequently utilize psychosocial services as they did medical ones. Identified barriers included lack of awareness, limited availability, long distances, and scheduling conflicts. While many studies primarily focus on adult patients or young adults, the present study examines the gaps and strengths in follow-up care for pediatric cancer survivors and their families. By acknowledging and addressing the unique challenges and strengths of families with pediatric cancer survivors, we can lead to a more tailored and effective follow-up approach that can enhance their overall well-being by minimizing barriers and providing targeted support.

Child-centredness in paediatric magnetic resonance imaging: Information needs and experiences of children requiring magnetic resonance imaging and their parents.

BACKGROUND: Assessing patient experiences is essential to provide high quality health-care. The objectives of this study were to examine (1) child- and parent-reported information status before magnetic resonance imaging (MRI), (2) experiences during an MRI and (3) needs and suggestions for improvement. METHODS: Children (≥8 years) and parents answered questionnaires (before and after planned MRI examination) covering mental condition, information status/needs, preparation for MRI, and potential stressors. Before MRI n = 132 accompanying parents and n = 91 children provided data (after MRI: n = 93 parents; n = 71 children). The mean age of the children undergoing MRI was 10.5 years (SD = 4.9). Children had on average seven previous MRIs before our survey (Range: 1-33). Twenty-three percent of the children were to be sedated during the examination. RESULTS: Parents and children reported low to medium levels of burden, high knowledge and high information status. For the children, most stressful factors during the MRI were boredom and noise. Main information resources were the radiologists or self-searches. Parents of children with their first MRI reported higher anxiety levels in their children and stated a worse information status (main information source: self-searches/internet). Parents reported needs regarding organization of the MRI (e.g., reduction of waiting times), age-appropriate information and communication during the MRI. Children wished to visit the MRI room prior the examination (44%) and to get more information (44%). Children suggested improvements such as better sound quality of films/music, more transparency about the procedure, being in contact with a parent and shorter examinations. CONCLUSION: Results suggest that preparation, information provision and care is perceived positively by families. Needs and suggestions for improvement were, for example, higher transparency of procedures, better communication and reduction of stress. Findings indicate that preparation in routine-care should follow an individualized child-focused approach, should focus on families without previous MRIs and should address children with high anxiety levels.

And what about today? Burden and support needs of adolescent childhood cancer survivors in long-term follow-up care-A qualitative content analysis.

PURPOSE: Childhood cancer affects approximately 2000 children annually in Germany, and there is an increasing number of long-term childhood cancer survivors. Due to developmental tasks, adolescent survivors in long-term follow-up (LTFU) care may face specific challenges and perceive different burden due to their disease. The current study explored (a) the impact of cancer and burden regarding survivorship and (b) supportive needs of adolescent childhood cancer survivors in LTFU care. METHODS: Semistructured qualitative interviews were conducted with 18 adolescent childhood cancer survivors in LTFU care aged 14-18 years (average age 16.4 years). Interviews were transcribed verbatim and analysed using content analysis. RESULTS: Based on the exploratory research questions, two key categories were generated: (1) The impact and burden on survivors' lives during LTFU care and (2) support needs of adolescent childhood cancer survivors in LTFU care. The four subcategories that emerged regarding the impact and burden on survivors' lives during LTFU care were (1) physical consequences, (2) cognitive impairments, (3) difficulties in social interactions, and (4) psychosocial burden. Additionally, two subcategories, (1) practical and (2) emotional support needs of adolescent childhood cancer survivors were identified. CONCLUSIONS: Our results indicate that childhood cancer influences adolescent survivors' life in a negative way even many years after the end of treatment. Furthermore, parents seem to play a crucial role in the survivorship experience of childhood cancer survivors, as they remain keep responsible for most cancer-related concerns even during LTFU care, causing adolescents to persist in the child role. A family systemic approach to care is suggested to facilitate development-specific tasks and to enable adolescents to become autonomous adults. Still, the question remains as to who in the health care system could take over the family systemic tasks.

[Consequences of a pandemic for people living with rare diseases and recommendations for maintaining healthcare and participation]. / Auswirkungen einer Pandemie auf Menschen mit Seltenen Erkrankungen und Empfehlungen zur Aufrechterhaltung von Versorgung und Teilhabe.

BACKGROUND: Rare diseases are often characterized by complex symptoms and usually require coordination of multiprofessional treatment during the diagnostic and healthcare processes. In the wake of the COVID-19 pandemic, the healthcare situation and daily life of people with rare diseases and the caregivers of children with rare diseases changed drastically. The aim of the research project RESILIENT-SE-PAN was to assess the situation of people with rare diseases and caregivers during COVID-19 and to develop recommendations based on the findings. METHODS: We conducted a mixed methods study including the perspective of people with rare diseases, caregivers and representatives from patient organizations and conducted a concluding workshop. RESULTS: The findings indicate an impact on healthcare and daily life of participants. Moreover, mental burden, supportive needs, COVID-19-specific aspects but also positive aspects were mentioned. Based on the findings from our mixed methods study, we developed 21 recommendations referring to the following topics: medical diagnostics and healthcare of the rare diseases, additional therapies and aids, access to COVID-19 information and vaccination, psychosocial support, participation and activities, patient organisations and others. DISCUSSION: The recommendations can provide an orientation for the organisation of healthcare in future crises or pandemics in order to adequately take the situations of people with rare diseases into account and consider the needs of this patient group.

Effectiveness of a training program for healthcare professionals on parental cancer: Results of a randomized controlled pilot-study.

OBJECTIVE: Cancer patients parenting minor children face specific burden and supportive needs, which are often not adequately addressed by their healthcare professionals (HCPs), due to a lack of knowledge, self-efficacy and competencies. Therefore, we developed a 3-h intervention enhancing HCPs' competencies in caring for these patients. We pilot-evaluated the intervention's feasibility and efficacy, assuming intervention group participants reveal higher improvements over time compared to non-trained participants. METHODS: We conducted a 3-armed randomized controlled pilot-trial (RCT), comparing face-to-face training (F2F), e-Learning (EL), waitlist-control group with three measurements (baseline, post-training, 3-month follow-up). Primary outcome was the competency to approach child- and family-related themes; secondary outcomes were knowledge, self-efficacy in (specific) communication skills. Intervention effects were analyzed using linear mixed models. RESULTS: Participants (n = 152) were mostly female (89%) and psychologists (38%; physicians 26%; nurses 18%). F2F and EL participants reported high training satisfaction. Analyses did not reveal any significant differences on the primary outcome between groups, but indicate positive intervention effects over time regarding secondary outcomes including knowledge and self-efficacy in communication skills. CONCLUSIONS: This is the first pilot-study evaluating a training for HCPs in oncology on parental cancer using a 3-armed RCT. The 3-h training program is a feasible approach and findings indicate to increase HCPs' knowledge and self-efficacy in caring for cancer patients with minor children. Further research is needed to verify preliminary findings of this pilot study. The study was pre-registered within the German Clinical Trial Register (DRKS-00015794).

Emotional and behavioral problems of pediatric cancer survivors and their siblings: Concordance of child self-report and parent proxy-report.

OBJECTIVE: Childhood cancer confronts families with major challenges. The study aimed at developing an empirical and multi-perspective understanding of emotional and behavioral problems of cancer survivors diagnosed with leukemia and brain tumors and their siblings. Further, the concordance between child self-report and parent proxy-report was examined. METHODS: 140 children (72 survivors, 68 siblings) and 309 parents were included in the analysis (respond rate: 34%). Patients, diagnosed with leukemia or brain tumors, and their families were surveyed on average 7.2 months after the end of intensive therapy. Outcomes were assessed using the German SDQ. Results were compared with normative samples. Data were analyzed descriptively, and group differences between survivors, siblings, and a norm sample were determined using one-factor ANOVA followed by pairwise comparisons. The concordance between the parents and children was determined by calculating Cohen's kappa coefficient. RESULTS: No differences in the self-report of survivors and their siblings were identified. Both groups reported significantly more emotional problems and more prosocial behavior than the normative sample. Although the interrater reliability between parents and children was mostly significant, low concordances were found for emotional problems, prosocial behavior (survivor/parents), and peer relationship problems (siblings/parents). CONCLUSION: The findings point out the importance of psychosocial services in regular aftercare. These should not only focus on survivors, but additionally address the siblings' needs. The low concordance between the parents' and the children's perspectives on emotional problems, prosocial behavior, and peer relationship problems suggests the inclusion of both perspectives to allow needs-based support.

Parent-reported health-related quality of life in pediatric childhood cancer survivors and factors associated with poor health-related quality of life in aftercare.

PURPOSE: Despite advances in cancer treatment, there is a prevalence of pediatric childhood cancer survivors still at risk of developing adverse disease and treatment outcomes, even after the end of treatment. The present study aimed to (1) explore how mothers and fathers assess the health-related quality of life (HRQoL) of their surviving child and (2) evaluate risk factors for poor parent-reported HRQoL in childhood cancer survivors about 2.5 years after diagnosis. METHODS: We assessed parent-reported HRQoL of 305 child and adolescent survivors < 18 years diagnosed with leukemia or tumors of central nervous system (CNS) with the KINDL-R questionnaire in a prospective observational study with a longitudinal mixed-methods design. RESULTS: In agreement with our hypotheses, our results show that fathers rate their children's HRQoL total score as well as the condition-specific domains family (p = .013, d = 0.3), friends (p = .027, d = 0.27), and disease (p = .035, d = 0.26) higher than mothers about 2.5 years after diagnosis. Taking variance of inter-individual differences due to family affiliation into account, the mixed model regression revealed significant associations between the diagnosis of CNS tumors (p = .018, 95% CI [- 7.78, - 0.75]), an older age at diagnosis, (p = .011, 95% CI [- 0.96, - 0.12]), and non-participation in rehabilitation (p = .013, 95% CI [- 10.85, - 1.28]) with poor HRQoL in children more than 2 years after being diagnosed with cancer. CONCLUSION: Based on the results, it is necessary for health care professionals to consider the differences in parental perceptions regarding children's aftercare after surviving childhood cancer. High risk patients for poor HRQoL should be detected early, and families should be offered support post-cancer diagnosis to protect survivors' HRQoL during aftercare. Further research should focus on characteristics of pediatric childhood cancer survivors and families with low participation in rehabilitation programs.

[Healthcare for people with rare diseases: recommendations for successful intersectoral collaboration]. / Versorgung von Menschen mit Seltenen Erkrankungen: Empfehlungen für eine gelungene intersektorale Zusammenarbeit.

BACKGROUND: Rare diseases often present complex symptoms and usually require intersectoral collaboration during diagnostic and therapeutic processes involving inpatient and outpatient care. Hence, smooth interfaces with little loss of information and cooperation are essential to provide appropriate care. Our study, the project ESE-Best, aims at developing recommendations for the design and implementation of intersectoral care for patients with rare diseases using various survey instruments. METHODS: Using quantitative and qualitative methods, multiple perspectives (primary physicians, expert centers of rare diseases, patients, parents) were assessed. Additionally, two expert workshops were conducted. RESULTS: Based on findings from our data, we formulated 28 recommendations in the following areas: (1) networking between primary physicians and expert centers, (2) intersections within the expert centers, (3) awareness of rare diseases, structures of expert centers and responsibilities, (4) collaboration between expert centers and patients/caregivers, and (5) further recommendations. CONCLUSION: Our recommendations provide a basis for a working management of intersectoral care in rare diseases. As the recommendations are based on broad data including multiple perspectives, external validity and feasibility can be assumed. Still, time and human resources as well as organizational structures in single centers or practices and regional structures need to be taken into account as they may impact intersectoral care.

The impact of cancer on the mental health of patients parenting minor children: A systematic review of quantitative evidence.

OBJECTIVE: To provide an overview of quantitative data on the impact of cancer on the mental health of patients parenting minor children. We focused on mental health outcomes, their levels and prevalence, and applied measurement tools. METHODS: MEDLINE, CINAHL, PsycInfo and Web of Science were searched up to March 2021. We included quantitative studies, published in a peer-reviewed journal and reporting outcomes on the mental health (e.g., depression, anxiety) of cancer patients parenting minor children (≤ 21 years). Study quality was assessed based on the National Institute for Health assessment tool for observational studies. This study is registered on PROSPERO (CRD42019141954). RESULTS: A total of 54 articles based on 36 different studies were included in this systematic review. Studies differ markedly regarding study and sample characteristics (e.g., outcome measures, sample size, parental health status). Depression and anxiety levels range from normal to abnormal, according to applied measurement tools. 7%-83% of parents with cancer have depression scores indicating probable depression and 19%-88% have anxiety scores indicating anxiety disorder. CONCLUSIONS: This review reveals the dimension of mental burden affecting cancer patients parenting minor children. To identify, address and timely treat potentially arising mental health problems and support needs, affected parents should be closely monitored by healthcare professionals and referred to specialized support offers, if necessary. In the context of a comprehensive patient- and family-oriented care, it is highly relevant to integrate mental health (including parental) issues routinely into oncological care by proactively asking for the patient's psychosocial situation and the family status.

[Childhood Cancer Patients in a Family-Oriented Rehabilitation Program: Goals and Change in Physical Functioning]. / Krebskranke Kinder in der familienorientierten Rehabilitation: Ziele und Veränderung der körperlichen Leistungsfähigkeit.

PURPOSE: Childhood cancer often leads to physical and psychosocial burdens that can persist beyond the end of treatment. Family-oriented rehabilitation programs (FOR) focus on long-term consequences and support families in returning to daily life. The objectives of this study were to describe rehabilitation goals and goal attainment, to analyze the relationship between physical functioning and physical well-being and to examine predictors of changes in physical functioning during the FOR. METHODS: In a prospective observational study, statements of physicians regarding rehabilitation goals, goal achievement and physical functioning of 175 children (<18 years of age at the time of diagnosis of leukemia or central nervous system tumor) at the beginning and the end of a FOR were analyzed. The physical well-being of the patients was assessed from a parent and child perspective. Correlation coefficients were calculated to analyze the relation between physical functioning and physical well-being. Predictors of changes in physical functioning were examined with a multiple regression analysis. RESULTS: The most frequently mentioned rehabilitation goals were the increase of physical functioning and the integration into the peer group. Overall, the goal achievement ranged from 82 to 100%. Physical functioning improved significantly during the FOR. A significant positive correlation between the physician's assessment of physical functioning and the parental assessment of physical well-being could be found at the beginning of the FOR. According to the regression model, female gender of the child and a longer time since diagnosis were associated with a lower change in physical functioning. Furthermore, a higher degree of physical consequential damages was associated with a larger change. CONCLUSIONS: The 4-week multimodal rehabilitation program of the FOR addressed various physical and psychosocial burdens and was accompanied by a significant improvement of the physical functioning of childhood cancer patients. The change in physical functioning was associated with different sociodemographic and medical factors (eg, sex). The consideration of these factors could help with optimizing the program.

Assessing competencies of healthcare professionals caring for parents with cancer: The development of an innovative assessment tool.

OBJECTIVE: This paper describes the development of an assessment tool capturing competencies of healthcare professionals (HCPs) in caring for cancer patients with minor children. METHODS: We combined the methods of clinical case vignettes and situational judgement tests (SJTs). Scenarios were created based on literature and interviews with patients, HCPs, and experts. We pretested the instrument by conducting cognitive interviews with n = 6 HCPs, who gave feedback on realism, clarity, and difficulty of the scenarios. RESULTS: The developed assessment tool measures the following competencies: HCPs' (1) application of knowledge, (2) behavioural responses to clinical scenarios, (3) attitudes regarding the relevance of integrating the parental role in cancer care, and (4) empathic behaviour towards affected parents. Results of the cognitive interviews indicate that the scenarios are perceived as realistic and clear. CONCLUSIONS: We provide an innovative approach by methodologically combining clinical case vignettes and SJTs. Next, the assessment tool will be applied in the context of a pilot evaluation of a newly developed training for HCPs that aims at enhancing their competencies in caring for cancer patients with minor children.

Fear of progression in parents of childhood cancer survivors: A dyadic data analysis.

OBJECTIVE: Fear of progression (FoP), also referred to as fear of cancer recurrence, is gaining increasing interest in survivorship research as it constitutes a great burden for patients and relatives. However, only little is known about FoP in parents of childhood cancer survivors. The objective of this study was to investigate the impact of FoP on quality of life (QoL) in parental couples. METHODS: We analyzed dyadic data of 197 couples parenting childhood cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system tumor) after the end of intensive cancer treatment. The actor-partner interdependence model calculated by structural equation modelling was used to examine actor effects (effect of one's own FoP on one's own QoL) and partner effects (effect of one's own FoP on the partner's QoL). RESULTS: Eighty-one percentage of the parents reported moderate or high FoP levels. Mothers reported higher FoP levels (p < .01) and lower overall QoL levels than fathers (p < .01). The results revealed a significantly positive intra-dyadic correlation between FoP of mothers and fathers of the same dyad (r = .431, p < .001). We found significantly negative actor effects for both mothers and fathers for the overall QoL (p < .001) as well as for several QoL subscales. No significant partner effects were found. CONCLUSIONS: Most parents reported elevated levels of FoP. Our results show that FoP in parents of childhood cancer survivors is strongly negatively associated with QoL. Parental FoP should therefore be explored in future research and needs to be targeted by health care providers.

Parental cancer: Characteristics of users of child-centred counselling versus individual psycho-oncological treatment.

OBJECTIVE: The aims of this study were to investigate the characteristics of users of a specific child-centred counselling service (COSIP) and to compare those to parents using an individual psycho-oncological treatment (PO). METHODS: We conducted a retrospective analysis on data of users of COSIP and users of PO. Database was the routine assessment (demographic and disease-related characteristics, GAD-7, PHQ-9, EORTC QLQ-C30, and current concerns) of an outpatient psycho-oncological clinic with additional child-centred counselling. A total of 151 patients and 49 partners with children ≤21 years were included. We conducted descriptive analyses and group comparisons. RESULTS: Fifty-nine patients and partners used COSIP only or additionally to individual psycho-oncological service. PO users were more depressed and were more anxious than COSIP users. Patients using PO reported worse emotional functioning than patients using COSIP. Partners using PO reported worse global quality of life and more symptoms of fatigue than partners using COSIP. With regard to current concerns, patients using COSIP reported child-related issues more frequently than PO users. PO users reported symptoms of anxiety, depressive symptoms, or exhaustion more frequently than COSIP users. CONCLUSIONS: The findings demonstrate that patients and partners self-referring to PO or COSIP are highly burdened. COSIP users experience different psychosocial burden than PO users. As poor mental state of parents is a risk factor for the development of mental problems in children, parents using only PO may benefit from additional child-centred support. Accordingly, the need for COSIP should be assessed continuously during PO of patients with children ≤21 years.

When a mother has cancer: strains and resources of affected families from the mother's and father's perspective - a qualitative study.

BACKGROUND: When a mother has cancer, families with minor children are confronted with major challenges for all family members. According to the Family Adjustment and Adaptation Response (FAAR) Model, the (im) balance between strains and resources of families affected by cancer can be an important indicator on the families' adjustment to the situation. Hence, this study aims to explore the strains and resources of families of mothers with cancer from the mother's and father's perspective. METHODS: We conducted semi-structured interviews with 29 mothers diagnosed with cancer and ten fathers. The data was transcribed verbatim and analyzed using thematic analysis. RESULTS: Both, mothers and fathers, reported a general impact of the disease regarding social and practical changes as well as strong emotional reactions. Parents reported specific strains and stressors regarding their parental role e.g. changes in the self-concept as a parent or fears and concerns about the children. Many mothers additionally experienced feelings of guilt. All fathers reported an increase of responsibilities and pressure. Both, the ill and healthy parent, reported strains and stressors for their children, e.g. parents observed behavioral changes and strong emotional reactions in their children. Families used a variety of resources and coping strategies on external, family and intrapersonal levels to encounter the challenges of the disease. They reported that e.g. support networks, flexible working hours and competent medical staff were helpful. Moreover, on the family level e.g. family time, open communication and the children themselves were considered to be important resources. On the intrapersonal level, parents reported resources such as setting small aims for the future and taking time for oneself. CONCLUSIONS: Our findings indicate a high amount and diversity of stressors and strains for the ill and healthy parent and for their children. At the same time, parents use diverse resources and coping strategies on external, family or intrapersonal level. The assessment of strains and resources may be an important indicator for the support needs of families when a mother has cancer. Enhancing and activating resources and coping strategies may help the families to manage the situation better and may prevent maladjustment in the family members.

Anxiety and depression in working-age cancer survivors: a register-based study.

BACKGROUND: Anxiety and depression can be a long-term strain in cancer survivors. Little is known about the emotional situation of cancer survivors who have to deal with work- and family-related issues. The purpose of this study was to investigate anxiety and depression in working-age cancer survivors and associated factors. METHODS: A register-based sample of 3370 cancer survivors (25 to 55 years at time of diagnosis) diagnosed up to six years prior to the survey was recruited from two German cancer registries. Demographic and medical characteristics as well as self-reported measures were used. RESULTS: Overall, approximately 40% of the survivors reported moderate to high anxiety scores and approximately 20% reported moderate to high depression scores. Compared to the general population, working-age cancer survivors were more anxious but less depressed (p < .001). Subgroups with regard to time since diagnosis did not differ in anxiety or depression. Anxiety and depression in cancer survivors were associated with various variables. Better social support, family functioning and physical health were associated with lower anxiety and depression. CONCLUSIONS: Overall, we found higher anxiety levels in cancer survivors of working-age than in the general population. A considerable portion of cancer survivors reported moderate to high levels of anxiety and depression. The results indicate the need for psychosocial screening and psycho-oncological support e.g. in survivorship programs for working-age cancer survivors. Assessing the physical health, social support and family background might help to identify survivors at risk for higher emotional distress.

[Parenting Concerns and Psychological Burden in Cancer Patients with Minor and Young Adult Children]. / Elterliche Sorgen und psychische Belastung bei krebskranken Eltern mit minderjährigen und jungerwachsenen Kindern.

Background Aim of the study was to analyze parenting concerns in cancer survivors and to identify covariats for parenting concerns. Method In a cross-sectional epidemiological sample of cancer survivors with minor children (n=1416) demographic and disease-related variables and psychological distress (HADS) were assessed. Parenting concerns were assessed using the Parenting Concerns Questionnaire (PCQ). The instrument covers the 3 subscales concerns about the 'practical impact' of the disease on the children, about the 'emotional impact' and concerns about the 'co-parent'. Results 73% of survivors were female; mean age was 47.5 years (SD 5.9). 24% to 71% of patients reporting parenting concerns showed normal levels of anxiety and depression. We identified living alone, younger age of the youngest child, higher tumor stage and suffering from a comorbidity as significantly associated with parenting concerns in all subscales of the PCQ. Low socio-economic status was found to be significantly associated with parenting concerns regarding the emotional and practical impact of the disease. Being a mother was associated with concerns in the subscale co-parent. Discussion Parents with cancer not only suffer from psychological distress but also from parenting concerns about the impact of their disease on their children. Psychological support services should broach the issue of parenting concerns. Families at risk should be identified to allocate tailored support.

[Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation]. / Belastungen bei Eltern krebskranker Kinder in der familienorientierten Rehabilitation.

Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation All family members experience high burden in case of paediatric cancer. Family-oriented rehabilitation (FOR) aims to improve the physical and mental situation of the families. We investigated anxiety and depression (HADS) and cancer-related burden of parents (n = 69) before and after FOR and analysed its association with quality of life of the ill children. At beginning of FOR 70 % of the parents showed moderate to high anxiety scores and 47 % moderate to high depression scores. They reported cancer-related burden such as exhaustion, cancer-related fears and a burden of family's daily life due to the cancer disease. At the end of FOR 40 % of the parents showed moderate to high anxiety scores and 30 % moderate to high depression. Cancer-related burden measured with self-developed items also decreased after FOR. Compared to age- and gender-adapted norm values, mothers show significantly higher anxiety and depression scores, whereas fathers show no differences in depression scores compared to norm values at the end of FOR. Quality of life of ill children and anxiety and depression scores in the parents are significantly associated with each other. Results of the study show that parents stabilise after FOR and improve their mental situation. However, the results also underline the need for long-term psychosocial support for all family members.

[Burden and Rehabilitation Goals of Families in Pediatric-oncological Rehabilitation]. / Belastungen und Reha-Ziele von Familien in der pädiatrisch-onkologischen Rehabilitation.

Burden and Rehabilitation Goals of Families in Pediatric-oncological Rehabilitation Survival rates of childhood cancer patients increased during the past years up to 80 %. Therefore, pediatric oncological rehabilitation is essential for reintegrating children with cancer into normal life. We performed an analysis of the current state in pediatric oncological rehabilitation with regards to the impairments of the participants and results in rehabilitation. Descriptive and content analyses of 422 medical discharge summaries were conducted. 55 % of the pediatric patients are male; the average age is 8.7 years. Children attending rehabilitation program are affected by various functional and psychosocial impairments. We identified global rehabilitation-goals such as integration in peer group and specific goals such as pain relief. According to rehabilitation physicians' opinion most patients achieve their rehabilitation-goals. Accompanying family members report a range of psychosocial burden and diverse concerns for rehabilitation. Medical discharge summaries display the complexity of family-oriented rehabilitation. We conclude that rehabilitation treatment needs to be tailored according to individual burdens and the whole family.

Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children.

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.