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Improving the quality of life and reducing suffering for patients and families facing life-limiting or lifethreatening illnesses is an ethical duty of HCPs and a moral responsibility of healthcare systems. Early integration of paediatric palliative care and bereavement care for families who lose their children is essential. Further research is required to investigate the global availability of paediatric palliative care, including bereavement care, for children with cancer and other life-limiting illnesses.  The cumulative thesis comprises three separate studies that focus on paediatric palliative and bereavement care for parents and families in the context of childhood cancer and other lifethreatening or life-limiting illnesses. The first paper discusses the availability of paediatric palliative care services, including bereavement care in paediatric oncology centres throughout Europe. It also examines the barriers and facilitators healthcare providers perceive when providing palliative care in their centres. The secondpaper presents a systematic review of hospital-based bereavement programmes and interventions that are offered to bereaved parents in low-middle income countries. The third paper outlines coping strategies adopted by families who have lost a child to childhood cancer, and factors that might influence them in adopting coping mechanisms.  The three studies provide new insights into the field of paediatric palliative care, with a focus on bereavement care. The results are thoroughly discussed and could serve as a basis for future research and implementation in clinical practice.&nbsp, + UNILU Diss 2024 F5 EL

Background Healthy behaviors are paramount in preventing long-term adverse health outcomes in childhood, adolescent, and young adult (CAYA) cancer survivors. We systematically reviewed and synthesized existing literature on barriers, facilitators, and other factors associated with health behaviors in this population. Methods MEDLINE and PsycInfo were searched for qualitative and quantitative studies including survivors aged 16–50 years at study, a cancer diagnosis ≤25 years and ≥2 years post diagnosis. Health behaviors included physical activity, smoking, diet, alcohol consumption, sun exposure, and a combination of these behaviors (defined as health behaviors in general). Results Barriers, facilitators, and other factors reported in ≥2 two studies were considered relevant. Out of 4529 studies, 27 were included (n = 31,905 participants). Physical activity was the most frequently examined behavior (n = 12 studies), followed by smoking (n = 7), diet (n = 7), alcohol (n = 4), sun exposure (n = 4), and health behavior in general (n = 4). Relevant barriers to physical activity were fatigue, lack of motivation, time constraints, and current smoking. Relevant facilitators were perceived health benefits and motivation. Influence of the social environment and poor mental health were associated with more smoking, while increased energy was associated with less smoking. No relevant barriers and facilitators were identified for diet, alcohol consumption, and sun exposure. Barriers to healthy behavior in general were unmet information needs and time constraints whereas lifestyle advice, information, and discussions with a healthcare professional facilitated healthy behavior in general. Concerning other factors, women were more likely to be physically inactive, but less likely to drink alcohol and more likely to comply with sun protection, + ID der Publikation: unilu_75240 + Sprache: Englisch + Letzte Aktualisierung: 2024-06-28 11:45:24

The aim of this review is to raise awareness and knowledge among healthcare professionals and policymakers about late adverse effects in survivors of childhood leukemia. With contemporary treatment, over 90% of children with acute lymphoblastic leukemia (ALL) and over 60% with acute myeloid leukemia (AML) are cured. Large cohort studies demonstrate that 20% of ALL and most AML survivors have at least one chronic health condition by 20-25 years after diagnosis. These are life-changing or threatening in some survivors and contribute to increased premature mortality. We describe the frequency, causes, clinical features, and natural history of the most frequent and severe late adverse effects in childhood leukemia survivors, including subsequent malignant neoplasms, metabolic toxicity, gonadotoxicity and impaired fertility, endocrinopathy and growth disturbances, bone toxicity, central and peripheral neurotoxicity, cardiotoxicity, psychosocial late effects, accelerated ageing and late mortality. The wide range of late effects in survivors of haemopoietic stem cell transplant is highlighted. Recent developments informing the approach to long-term survivorship care are discussed, including electronic personalized patient-specific treatment summaries and care plans such as the Survivor Passport (SurPass), surveillance guidelines and models of care. The importance of ongoing vigilance is stressed given the increasing use of novel targeted drugs with limited experience of long-term outcomes.Conclusion. It is vital to raise awareness of the existence and severity of late effects of childhood leukemia therapy among parents, patients, health professionals, and policymakers. Structured long-term surveillance recommendations are necessary to standardize follow-up care., + ID der Publikation: unilu_75332 + Sprache: Englisch + Letzte Aktualisierung: 2024-07-16 13:53:19

Objectives: To assess the association between socioeconomic status (SES) and self-reported adherence to preventive measures in Switzerland during the COVID-19 pandemic. Methods: 4,299 participants from a digital cohort were followed between September 2020 and November 2021. Baseline equivalised disposable income and education were used as SES proxies. Adherence was assessed over time. We investigated the association between SES and adherence using multivariable mixed logistic regression, stratifying by age (below/above 65 years) and two periods (before/after June 2021, to account for changes in vaccine coverage and epidemiological situation). Results: Adherence was high across all SES strata before June 2021. After, participants with higher equivalised disposable income were less likely to adhere to preventive measures compared to participants in the first (low) quartile [second (Adj.OR, 95% CI) (0.56, 0.37–0.85), third (0.38, 0.23–0.64), fourth (0.60, 0.36–0.98)]. We observed similar results for education. Conclusion: No differences by SES were found during the period with high SARS-CoV-2 incidence rates and stringent measures. Following the broad availability of vaccines, lower incidence, and eased measures, differences by SES started to emerge. Our study highlights the need for contextual interpretation when assessing SES impact on adherence to preventive measures., + ID der Publikation: unilu_75292 + Sprache: Englisch + Bemerkungen: Article 1606861 + Letzte Aktualisierung: 2024-07-16 13:58:51

Background: Childhood cancer survivors may experience psychological distress due to the disease, cancer treatments, and potential late effects. Limited knowledge exists regarding longitudinal changes in psychological distress after childhood cancer. We aimed to determine changes in psychological distress over time and explore determinants of changes. Methods: The Swiss Childhood Cancer Survivor Study collected data at baseline (2007–2009) and follow-up (2010–2012). Psychological distress was measured using the Brief Symptom Inventory 18 (BSI-18), including three symptom scales (somatization, depression, anxiety) and an overall distress index (Global Severity Index, GSI). Sum-scores were T-standardized (mean = 50; standard deviation [SD] = 10). Survivors with a score ≥57 on the GSI or two symptom scales were classified as cases with distress. We used linear mixed effects regression to identify potential sociodemographic and clinical determinants of change in psychological distress. Results: We analyzed 696 survivors at baseline (mean age = 24 years [SD = 4], 49% females, mean time since diagnosis = 16 years [SD = 4]). On follow-up (2.4 years, SD = 1), 317 survivors were analyzed, including 302 participants with repeated measures. We found that 13% (39/302) were cases at baseline, and 25% (76/302) were cases on follow-up. Those older at study and longer since diagnosis, females, diagnosed with central nervous system (CNS) tumors, and those reporting late effects were more likely to experience higher levels of distress. Females and unemployed are at higher risk for developing or persisting psychological distress than males and those who are employed or in training. Conclusion: We observed an increase in psychological distress score over time, with higher proportion of psychological distress on follow-up. Anticipatory guidance and screening should be implemented in regular follow-up care., + ID der Publikation: unilu_75066 + Sprache: Englisch + Letzte Aktualisierung: 2024-07-01 09:55:04

Objectives In our study, we aimed to characterise adult childhood cancer survivors (ACCS), assess their health issues, gauge health-related quality of life (HRQOL) and evaluate visit satisfaction.Design Prospective cohort study using data from clinical visits and questionnaires.Setting Interdisciplinary follow-up programme for ACCS based on the long-term follow-up (LTFU) guidelines of the Children's Oncology Group and overseen by internists in two Swiss hospitals.Participants ACCS attending our LTFU clinics between April 2017 and January 2022 were eligible.Interventions We documented medical history, current health status and assessed HRQOL using Short Form-36 V.2, comparing it with Swiss general population (SGP) norms (T mean=50, SD=10; age stratified). 3 months post visit, a feedback questionnaire was distributed.Main results Among 102 ACCS (mean age: 32 years (range: 18–62 years), 68% women), 43 had no prior follow-up (36 ACCS>28 years, 7 ACCS≤28 years). A notable 94% had health issues, affecting an average of 6.1 (SD=3.3) organ systems. HRQOL was lower in ACCS>28 years than the SGP>28 years (physical: 44.8 (SD=11.65) vs 49.3 (SD=10.29), p=0.016; mental: 44.4 (SD=13.78) vs 50.53 (SD=9.92), p=0.004). Older ACCS (>28 years) reported inferior physical (44.8 vs 50.1 (SD=9.30), p=0.017) and mental HRQOL (44.4 vs 50.3 (SD=7.20), p=0.009) than younger ACCS. The majority of respondents reported high levels of satisfaction with the consultation, exceeding 90%.Conclusion ACCS attending LTFU clinics face diverse health issues impacting multiple organ systems and exhibit lower HRQOL compared with the SGP. Thus, internist-led LTFU clinics are crucial for optimising follow-up care.Data are available upon reasonable request. Data are available on reasonable request. Data can be made available to collaborating researchers on request and decision in the steering committee. The data are not publicly available due to containing information that could compromise the priv, + ID der Publikation: unilu_75339 + Sprache: Englisch + Letzte Aktualisierung: 2024-07-16 13:45:22

Childhood cancer is an illness affecting the entire family unit, including the patients, as well as extended family members such as grandparents. The current thesis aimed to fill the knowledge gap in two overlooked areas of pediatric psycho-oncology: the sexuality of childhood cancer survivors (CCS) and the psychological health of grandparents of CCS. Two different methodologies were applied in three distinct studies for this purpose. The first study used a cross-sectional quantitative design in order to describe the sexuality of CCS in comparison to a reference population and explored the determinants of survivors’ sexuality. The second study was a systematic literature review investigating the psychological outcomes in grandparents of children with severe illnesses and summarizing the needed and used psychological support of grandparents. The third study assessed the psychological distress of grandparents of CCS in a cross-sectional quantitative survey and compared the distress of grandparents to the general population. The conducted studies have provided valuable insight into these understudied areas of childhood cancer and allowed for the formulation of recommendations for further research and clinical practice.&nbsp, UNILU Diss 2017 F5 EL

Psychological distress is an important and frequent health problem. The Brief Symptom Inventory (BSI) allows screening for psychological distress in clinical, general and research populations. We aimed to provide normative data for the BSI and the BSI-18 for the Swiss general population: We 1) present psychometric properties, 2) develop a Swiss T-standardization and validate it using a clinical sample, 3) describe psychological distress in the Swiss general population and the clinical sample, and 4) compare the means and T-standardized scores of the Swiss general population to different German norm populations. Using a cross-sectional study design, we invited a representative sample of the Swiss general population aged 18–75 years to the study. A sample of psychotherapy outpatients had competed the BSI before start of their therapy. We calculated scores for the nine scales of the BSI (three of them constitute the BSI-18), the T-standardization and the following BSI indices: Global Severity Index (GSI), Positive Symptom Total (PST), Positive Symptom Distress Index (PSDI), and Caseness (reaching T≥63 on the GSI or T≥63 on at least two of the scales). A total of 1238 general population participants completed the BSI (41.8% male; mean age 48.9 years). The BSI had good psychometric properties. The Swiss T-standardization showed good validity when applied in the clinical sample. Females reached a significantly higher GSI score than males (p<0.001). Older participants (p = 0.026), those with higher education (p <0.001), and those employed or retired (p<0.001) reached lower scores than participants aged 18–25 years, those with compulsory schooling, and unemployed participants, respectively. A total of 18.1% (CI: 16.0–20.5) participants of the general population and 75.2% (CI: 73.7–76.7) of the psychotherapy patients were considered cases with psychological distress. Our study presents detailed normative data for the BSI and the BSI-18 based on a representative samp, + ID der Publikation: unilu_75299 + Sprache: Englisch + Letzte Aktualisierung: 2024-07-10 08:48:26

Background. This dissertation aimed to understand and address the psychosocial challenges faced by  childhood cancer patients and their families during treatment and beyond. More specifically, the aims were to: 1) explore the psychosocial experiences of grandparents during the acute phase of their  grandchild’s cancer treatment, 2) examine the prevalence and associated factors of fertility-related  concerns in long-term childhood cancer survivors, and 3) provide practical guidance on screening for  mental health problems in childhood cancer survivorship. Methods. Semi-structured interviews were used to explore the psychosocial experiences of  grandparents during their grandchild’s cancer treatment, as this has been an area with limited previous  research findings. In addition, a quantitative cohort study was conducted to gather generalizable data  on fertility-related concerns among childhood cancer survivors, complementing previous qualitative  studies. Furthermore, a systematic literature review synthesized existing evidence relevant to mental  health screening in follow-up care. Results. The challenges experienced by grandparents during their grandchild’s cancer treatment were  notable, yet many demonstrated coping strategies and reported positive outcomes despite these  adversities. Long-term survivors of childhood cancer frequently expressed fertility-related concerns,  especially when looking at longitudinal patterns, highlighting the significance and persistence of such  concerns. There are numerous options for implementing brief mental health screening tools in  survivorship care that can, + UNILU Diss 2017 F5 EL

Background: The objective of this study was to examine the prevalence of unhealthy lifestyle behaviors, overweight, and obesity in Dutch childhood cancer survivors (CCSs) compared with sibling controls and the Dutch general population. Other aims were to assess associated factors of unhealthy lifestyle behaviors, overweight, and obesity and to identify subgroups of CCSs at risk for these unhealthy statuses. Methods: The authors included 2253 CCSs and 906 siblings from the Dutch Childhood Cancer Survivor Study-Late Effects After Childhood Cancer cohort, part 1, and added data from the Dutch general population. Questionnaire data were collected on overweight and obesity (body mass index >25.0 kg/m2), meeting physical activity guidelines (>150 minutes per week of moderate or vigorous exercises), excessive alcohol consumption (>14 and >21 alcoholic consumptions per week for women and men, respectively), daily smoking, and monthly drug use. Multivariable logistic regression analyses and two-step cluster analyses were performed to examine sociodemographic-related, health-related, cancer-related, and treatment-related associated factors of unhealthy lifestyle behaviors and to identify subgroups of CCSs at risk for multiple unhealthy behaviors. Results: CCSs more often did not meet physical activity guidelines than their siblings (30.0% vs. 19.3%; p <.001). Married as marital status, lower education level, nonstudent status, and comorbidities were common associated factors for a body mass index ≥25.0 kg/m2 and insufficient physical activity, whereas male sex and lower education were shared associated factors for excessive alcohol consumption, daily smoking, and monthly drug use. A subgroup of CCSs was identified as excessive alcohol consumers, daily smokers, and monthly drug users. Conclusions: The current results emphasize the factors associated with unhealthy behaviors and the potential identification of CCSs who exhibit multiple un

Objective A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. Methods We collected data using a semi-structured interview guide and applied qualitative content analysis. Results We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0–82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0–18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4–1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. Conclusions Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system

Introduction Having a grandchild who survived childhood cancer might affect grandparents' mental health. We aimed to A) describe the psychological distress of grandparents of childhood cancer survivors (CCS) and compare their distress to the Swiss general population, and B) explore the associations between the psychological distress of grandparents with person-, child-, and cancer-related characteristics. Methods This is a cross-sectional study conducted in Switzerland. Grandparents were identified from families of eligible CCS (cancer diagnosis before 18 years old; 3-10 years after diagnosis). A subsample of a representative sample for the Swiss general population was used for comparison similar in age, gender and language region. The Brief Symptom Inventory-18 (BSI-18) was administered to assess psychological distress on three domains: somatization, depression, anxiety; and a Global Severity Index [GSI]. We run Chi-squared and t-tests to compare grandparents and comparisons, and univariable, multivariable and multilevel regressions to analyze associations. Results In total, 122 grandparents (60.7% female, mean age=72.8; SD=6.8) and 354 comparisons participated (55.4% female; mean age=65.7; SD=5.5). Grandparents reported average distress levels and their scores did not differ significantly from the comparison sample (all p>.05). Grandparents with worse health perception described more psychological distress (somatization: β=6.86, p<.001; depression: β=4.17 p<.001; anxiety: β=5.87, p<.001; GSI: β=6.30, p<.001), while single grandparents experienced more depression than those in a partnership (β=-6.21, p=.013). Discussion Our findings are encouraging, showing adequate psychological health among grandparents of CCS. However, grandparents who perceive, + ID der Publikation: unilu_74573 + Sprache: Englisch + Letzte Aktualisierung: 2024-05-29 11:31:15

Parental grief is often found to be more intense and prolonged than other types of loss. Cooling facilities such as air-conditioned rooms or cold cots can allow parents to spend more time with their child by slowing the body?s decomposition. Similar to other bereavement interventions, the implementation of these technologies is largely practice based. We conducted a scoping literature review on cooling facilities to contribute to the development of more evidence-based principles of good practice. The Preferred Reporting Items for Systematic Reviews was used as the methodological protocol. The review shows that the provision of cooling facilities is an integral part of the perinatal and paediatric palliative care setting in the UK, where cool rooms and cold cots seem to function as a form of post-mortem ritualisation that protects the parent-child relationship. However, availability does not necessarily mean accessibility as families whose child died from a sudden death may not be referred to the hospice by their general practitioner or the hospital. Although cooling facilities support recent theories of grief and are positively evaluated by the families who have used them, more and larger-scale research is needed on their impact on families? grief trajectories and the wellbeing of healthcare professionals., + ID der Publikation: unilu_82790 + Sprache: Englisch + Letzte Aktualisierung: 2024-08-12 11:11:01

Introduction: The death of a child may be the most traumatic event a family can experience. Bereavement care for parents is essential for their physical and mental well-being and is a psychosocial standard of care. Childhood mortality is higher in low- or middle-income countries (LMICs); however, little is known regarding bereavement support or interventions for parents in LMICs. Aim: To identify programs, services, initiatives, or interventions offered to bereaved parents in LMICs in hospital settings. Methods: A systematic search was executed following the Preferred Reported Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles from LMICs describing interventions, programs, or resources provided to parents after the death of a child (0-18 years old) from any cause were included. Extracted data was categorized by demographics, study design, outcomes, and quality assessment using the McGill Mixed Methods Appraisal Tool (MMAT). Results: We retrieved 4428 papers and screened their titles and abstracts, 36 articles were selected for full-text assessment, resulting in nine articles included in the final analysis. Most interventions described support for parents whose child died during the prenatal or neonatal period. The primary interventions included psychological counseling, creating mementos (such as photographs or footprints), and bereavement workshops. Only one paper described a fully established bereavement program for parents. Eight of the papers met high-quality criteria. Discussion: Although bereavement care is crucial for parents whose child has died, only a few studies have documented bereavement interventions in LMICs. More research may help with bereavement program implementation and improved care for bereaved parents in LMICs., + ID der Publikation: unilu_74984 + Sprache: Englisch + Letzte Aktualisierung: 2024-05-27 17:59:51

Background The objective of this study was to examine the prevalence of unhealthy lifestyle behaviors, overweight, and obesity in Dutch childhood cancer survivors (CCSs) compared with sibling controls and the Dutch general population. Other aims were to assess associated factors of unhealthy lifestyle behaviors, overweight, and obesity and to identify subgroups of CCSs at risk for these unhealthy statuses. Methods The authors included 2253 CCSs and 906 siblings from the Dutch Childhood Cancer Survivor Study-Late Effects After Childhood Cancer cohort, part 1, and added data from the Dutch general population. Questionnaire data were collected on overweight and obesity (body mass index >25.0 kg/m2), meeting physical activity guidelines (>150 minutes per week of moderate or vigorous exercises), excessive alcohol consumption (>14 and >21 alcoholic consumptions per week for women and men, respectively), daily smoking, and monthly drug use. Multivariable logistic regression analyses and two-step cluster analyses were performed to examine sociodemographic-related, health-related, cancer-related, and treatment-related associated factors of unhealthy lifestyle behaviors and to identify subgroups of CCSs at risk for multiple unhealthy behaviors. Results CCSs more often did not meet physical activity guidelines than their siblings (30.0% vs. 19.3%; p < .001). Married as marital status, lower education level, nonstudent status, and comorbidities were common associated factors for a body mass index ≥25.0 kg/m2 and insufficient physical activity, whereas male sex and lower education were shared associated factors for excessive alcohol consumption, daily smoking, and monthly drug use. A subgroup of CCSs was identified as excessive alcohol consumers, daily smokers, and monthly drug users. Conclusions The current results emphasize the factors associated with unhealthy behaviors and the potential identification of CCSs who exhibit multiple unhealthy lifestyle b, + ID der Publikation: unilu_74706 + Sprache: Englisch + Letzte Aktualisierung: 2024-05-29 11:24:41