Exploring the perspective of adolescent childhood cancer survivors on follow-up care and their concerns regarding the transition process-A qualitative content analysis.

PURPOSE: In Germany, children diagnosed with cancer survive their initial disease in more than 80%, and the majority will become long-term survivors. Around the age of 18, survivors are transferred to adult healthcare. The transition can be a critical period in the process of care at which many childhood cancer survivors discontinue to participate in regular follow-up care. Hence, the objective of the paper was to explore (a) survivors' attitudes towards pediatric follow-up care and (b) their concerns regarding the transition process to draw conclusions for optimizing pediatric care and transition processes. METHODS: We conducted semi-structured interviews with 21 adolescent childhood cancer survivors between the ages of 14 and 20. The survivors were recruited via a pediatric oncology department of a university hospital in Germany. Based on the principles of qualitative content analysis, a deductive-inductive method according to Kuckartz was applied. RESULTS: Based on the interview guide and derived from the exploratory research questions, two key categories were generated: (a) Survivors' attitudes towards pediatric follow-up care, which encompasses all formal and emotional aspects of survivors regarding follow-up care, and (b) their concerns regarding transition from pediatric to adult healthcare, where hindering and facilitating factors for a successful transition occur. Our results show high satisfaction among survivors with follow-up care. Nevertheless, they wish to be more integrated into processes and the organization of their follow-up care. Most adolescent survivors do not feel ready for transition. CONCLUSION: The integration of survivors into the organization processes and routines, and the promotion of emotional detachment from pediatric health care professionals (HCPs) are important to reduce concerns and uncertainties of adolescent survivors regarding the transition process and to promote subjective readiness for transition. To gain confidence in the adult healthcare, it is crucial to provide tailored education depending on individual requirements and needs and to build trusting relationships between survivors and adult HCPs.

Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany - a mixed-methods study.

BACKGROUND: Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients' and caregivers' general experience of healthcare, (2) to analyse patients' and caregivers' perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients' and caregivers' satisfaction with healthcare in the expert centers for rare diseases. RESULTS: In total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs. CONCLUSIONS: Our findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.

Reintegration into school, kindergarten and work in families of childhood cancer survivors after a family-oriented rehabilitation program.

Objective: To describe the situation of childhood cancer survivors and their parents before and one year after a family-oriented rehabilitation program (FOR) and to identify factors influencing reintegration. Methods: We included parents of children diagnosed with leukemia or central nervous system tumor. We assessed parental functioning using the functioning subscale of the Ulm Quality of Life Inventory for Parents (ULQIE) and children's school/kindergarten related quality of life (parental assessment, subscale KINDL-R). Descriptive analyses, group comparisons and multiple regression analyses on data of 285 parents of 174 children diagnosed with leukemia or central nervous system tumor. Results: Parents reported changes in their work situation (e.g., reduction of working hours) due to their child's diagnosis. Parental functioning increased significantly over time. Children's leukemia diagnosis and shorter time since the end of treatment were associated with higher functioning in parents one year after FOR. Parents reported difficulties in the child's work pace, concentration, stress resilience and empathy. The school/kindergarten-related quality of life (QoL) of the children was lower than in the general population. One year after FOR, most children reintegrated fully in school/kindergarten, partly with support (e.g., integration assistant). No significant predictors for children's reintegration were identified. Discussion: Parents and children experience major changes in their work/school/kindergarten life. One year after FOR most parents reported a reintegration of their children, however the children's school/kindergarten-related QoL remained below average compared to norm values. Even after rehabilitation families of childhood cancer survivors might benefit from psychosocial and practical support offers to support families with the reintegration into work/school/kindergarten.

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.

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.

[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.

Exploring the perspectives of cancer patients parenting minor children: A qualitative study on family-centered cancer care experiences.

OBJECTIVES: Parents with cancer experience not only disease-related burden but also child- and family-related concerns. According to the German guidelines, all professionals working in oncology are responsible for addressing these burdens and needs and for involving the patient's relatives. This study aims to explore patients' perspectives on their experiences regarding family-centeredness in cancer care. METHODS: We conducted interviews with 18 cancer patients parenting at least one minor child (< 18). The interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Most parents reported that their healthcare professionals (HCPs) rarely or not routinely discussed family issues. There was a wide range of ways in which HCPs communicated about family issues. Parents often felt unsure about professionals' responsibilities and many of them expressed a desire for more proactive communication. CONCLUSIONS: The findings suggest that the majority of patients have unmet needs related to comprehensive care as parents. PRACTICE IMPLICATIONS: HCPs need to be sensitized to identify parents facing additional burdens and needs. It is essential that HCPs clarify parents' preferences regarding the extent of involvement of family issues in cancer care.

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).

Supportive and psychosocial peer-group interventions for children and adolescents of parents with cancer: A systematic review.

OBJECTIVE: Children and adolescents are highly affected by their parents` cancer disease. This review aims to summarize peer-group interventions for children and adolescents of cancer patients, where those affected have the opportunity to exchange and normalize their feelings among equals. METHODS: A systematic review searching four different databases (MEDLINE, PsycInfo, CINAHL and Web of Science) was conducted. We included studies investigating psychosocial peer-group interventions for offspring of cancer patients. A narrative synthesis summarised the characteristics of the interventions and the findings on effects and evaluation. RESULTS: Ten articles on seven different peer-group interventions were analysed. Research designs and intervention concepts were heterogeneous. Overall, high acceptance, feasibility and positive effects of peer-group support were reported. Significant effects were found in six studies, e.g. in relation to psychological well-being, quality of life and coping skills. CONCLUSION: Peer-group interventions are an accepted and helpful form of support. Providing children and adolescents of cancer patients for example with psychoeducation, community and coping strategies, thereby impacting on psychological well-being. PRACTICE IMPLICATIONS: For comprehensive care, it seems to be important to offer support throughout the parent's cancer journey and to offer support flexibly as needed through group services as well as individual sessions.

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.

[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.

Impact of the COVID-19 pandemic on health care and daily life of patients with rare diseases from the perspective of patient organizations - a qualitative interview study.

BACKGROUND: During the COVID-19 pandemic people affected by rare diseases (RD) or caregiver of affected children have faced additional challenges. The pandemic has affected physical and mental health, social life and has led to financial consequences. Our objectives were to identify the impact of COVID-19 (1) on health care and (2) on daily life and participation of patients with RDs or caregivers from the perspective of representatives of patient organizations. Moreover, we explored their perspective on experiences of pandemic stress and resources during the pandemic. RESULTS: We conducted 18 semi-structured interviews with representatives of patient organizations (e.g. chairperson, members of the steering committee), who were asked about the experiences of their members. The interviews were transcribed verbatim and analyzed using the framework approach. We contextualized our findings on the basis of the International Classification of Functioning, Disability and Health (ICF) model and adapted it according to identified subthemes. Patients and caregivers were confronted with aspects of pandemic stress such as lack of information, access and information regarding vaccination and being a risk group for COVID-19 infection. Physical and mental functioning was reported to be negatively impacted. Lock downs and contact restrictions led, e.g., to increasing lack of nursing services or lack of necessary informal support. Participation e.g. in social life and work was reduced. Health care services including medical care and supportive care as well as additional therapies were disrupted and greater effort was necessary to organize care. According to participants, central resources were informal support networks, digitalization, patient organizations and individual characteristics. CONCLUSIONS: Our study highlights the consequences of the COVID-19 pandemic on the situation of people affected by RDs and caregivers. Contextualization of the results into the biopsychosocial model reinforces the impact of the pandemic on health care as well as daily life and participation. Major challenges and difficulties were experienced during lockdowns and contact restrictions. Depending on the risk of an infection with COVID-19, certain patient groups were still isolated and reduced social contacts or still followed strict hygienic measures (e.g., wearing medical masks). Future pandemic control measures, e.g. on lockdowns and closing facilities, should consider the challenges of people with RDs and caregivers of affected children.

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.

Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy.

Spinal muscular atrophy (SMA) is a neurodegenerative disorder that is characterized by progressive weakness, respiratory insufficiency, and dysphagia. Due to symptom burden and disease progress, its care management and impact on daily life can severely burden the families of affected children. The objectives of this study are (1) to explore the health care experiences and (2) to investigate the psychosocial needs of the parents of children with SMA. In total, 29 parents of patients with SMA participated in our study. All children received supportive therapy (e.g., physiotherapy) and most were dependent on medical equipment. Parents perceived the health care positively regarding team quality, communication and access to medical care. An assessment of the impact of the child's health on the family (e.g., stressors, burden, consequences) is not routinely integrated into care. On average, parents reported low to medium levels of psychosocial needs. Due to the complex health care needs of SMA patients, the health care experiences of parents can provide relevant information on care delivery. To enhance the inclusion of psychosocial and emotional issues, as well as family impact, into routine health care, health care providers should be sensitive towards parental needs for consistency in the health care team and emotional aspects and, if applicable, address them proactively.

Child- and family-specific communication skills trainings for healthcare professionals caring for families with parental cancer: A systematic review.

INTRODUCTION: As part of high-quality cancer care, healthcare professionals (HCPs) play a significant role in identifying and addressing specific needs of cancer patients parenting minor children. However, HCPs experience various barriers to adequately support parents with cancer. This systematic review explores current CSTs incorporating child- and family- specific modules for HCPs in oncology. Moreover, outcome measures and effectiveness of trainings are systematically investigated. METHODS: The systematic review was registered within PROSPERO (registration code: CRD42020139783). Systematic searches were performed in four databases (PubMed, Cinahl, PsycInfo, Web of Science) in 12/2020, including an update in 12/2021 and 08/2022. Quantitative, primary studies fulfilling the pre-defined inclusion criteria were included. Due to the expected heterogeneity a meta-analysis was not conducted. Study selection and quality assessment were conducted by two independent researchers, data extraction by one. Study quality was assessed using an adapted version of the National Institutes of Health quality assessment tool for pre-post studies without control group. RESULTS: Nine studies were included in this review following an experimental pre-post design only. Two CSTs were specifically designed to improve communication with cancer patients parenting minor children, the remaining seven incorporated a brief family module only. Seven programs were face-to-face trainings, one an e-learning and one a webinar. Eight studies found at least one statistically significant improvement in communication after training. However, quality of most studies was fair. CONCLUSION: This is the first review exploring specific CSTs for HCPs caring for cancer patients parenting minor children. As only two CSTs focused on parental cancer, evidence on the effectiveness of such CSTs is limited. Existing CSTs should be evaluated properly and include details on content of family modules. Further studies including and evaluating specific CSTs focusing on parental cancer are needed in order to strengthen HCPs' competencies to meet specific needs of patients parenting minor children.

Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs.

BACKGROUND: Spinal muscular atrophy (SMA) is a rare degenerative neuromuscular disease, mostly occurring in infants and children, leading to muscle wasting and weakness, and premature death. Due to new developments of multiple disease-modifying treatments within the last years, the interest of research in patients affected by SMA increased steadily. However, the psychosocial situation of parents as informal caregivers is still rarely addressed. OBJECTIVES: This review aims to highlight quantitative and qualitative data about the psychosocial situation, caregiver burden, and needs of parents as informal caregivers for children and adolescents with SMA. METHODS: A systematic literature review was performed including quantitative and qualitative original studies focusing on different psychosocial aspects and outcomes for parents of children and adolescents < 21 years of age with SMA type I-IV (PROSPERO; registration number CRD42020219020). We searched the following databases in November 2020 with a research update in August 2021: MEDLINE, CINAHL, PsycINFO and Web of Science. RESULTS: In total, 24 articles from 23 studies were selected for inclusion (15 quantitative studies, 7 articles from 6 qualitative studies, 2 mixed methods studies). The synthesis of included studies shows multiple sources of psychosocial burden for parents of children and adolescents affected by SMA: Most studies found reduced levels of quality of life, moderate to high levels of caregiver burden and distress, as well as physical and mental health symptoms. Further, findings indicate several unmet family needs regarding information, care coordination, treatment decisions, financial support, and adequate supportive care services. CONCLUSION: Parents of children and adolescents with SMA face multiple sources of psychosocial stressors, caregiver burden and various unmet family needs. To unburden families, the needs of parents as caregivers should be included in integrated care paths for SMA to improve their psychosocial situation and thus their ability to care for their children and to treat or prevent physical and mental health problems due to overburdening. Future research should focus not only on quality of life and on caregiving-related burden but should also examine the clinical relevance of reported symptoms to support the implementation of adequate support services for families affected by SMA.

Children with cancer and their families after active treatment: analyses of biopsychosocial needs and implications for healthcare - a study protocol.

INTRODUCTION: Patients and families affected by paediatric cancer experience psychosocial burden not only during active treatment but also during follow-up care. Use of health services during follow-up treatment should be organised according to patients' and family members' needs with regard to their physical and mental situation. This study aims (1) at analysing healthcare use (medical and psychosocial) and associated factors in follow-up care of paediatric cancer patients and (2) at investigating the psychosocial situation and support needs of children and their families during follow-up care. Based on the results, recommendations for healthcare planning and for the development of new and the optimisation of existing support offers will be derived. METHODS AND ANALYSIS: We will conduct a prospective observational study using a naturalistic explorative design with quantitative and qualitative methods. Paediatric cancer patients in follow-up care, their parents and siblings will be invited to fill out a questionnaire at three measurement points (baseline, 6 months follow-up, 12 months follow-up; target n=252 complete data sets over all measurement points). Additionally, parents will be interviewed using a semistructured interview guideline (target n=15-20) at baseline. Quantitative data will be analysed using descriptive statistics, linear mixed models and regression models. Moreover, explorative analyses will be conducted. Qualitative data will be analysed using qualitative content analyses. ETHICS AND DISSEMINATION: The study was approved by the Local Psychological Ethics Committee (LPEK-0281). Our findings will be published in scientific, peer-reviewed journals and presented to clinicians and researchers on conferences. To assure that results will be available to affected patients and families, a lay summary will be written and disseminated using several ways (upload on the homepage of the research group, upload on the homepage of the psychosocial working group in the Society for Paediatric Oncology/Haematology in Germany, sending to relevant patient organisations). TRIAL REGISTRATION NUMBER: DRKS00025289.

Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents.

Background: Parents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: (1) investigating the acceptability and usability of the information booklet, (2) determining parental information needs, and (3) collating suggestions for implementation. Finally, we adapted the booklet according to the findings. Methods: We interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis. Results: (1) Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. (2) Following dimensions were identified as information needs: (a) communication, (b) support offers, (c) children's disease understanding and needs, (d) organization of family life, (e) competence in parenting, and (f) sources of additional information material. (3) The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings. Conclusion: Indicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated.

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.

Fear of progression in parents of childhood cancer survivors: prevalence and associated factors.

PURPOSE: Recent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers. METHODS: Five hundred sixteen parents of pediatric cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models. RESULTS: Significantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001). CONCLUSIONS: FoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP. IMPLICATIONS FOR CANCER SURVIVORS: Psychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.