Psychosocial Distress in Women With Breast Cancer and Their Partners and Its Impact on Supportive Care Needs in Partners

Objectives: While both patients and informal caregivers report high levels of cancerrelated distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners. Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34). Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress (p = 0.02), whereas patients (self-assessment) indicated stronger needs for help (p < 0.001). Men with higher levels of distress were younger (p < 0.001), and reported a shorter relationship duration (p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain. Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions

Study protocol of a randomized controlled trial on two new dissemination strategies for a brief, shared-decision-making (SDM) training for oncologists: web-based interactive SDM online-training versus individualized context-based SDM face-to-face training

Background: Oncological patients often feel left out of important treatment decisions. However, when physicians engage them in shared decision-making (SDM), patients benefit in many ways and the situation is improved. SDM can effectively be taught to physicians, but participation barriers for SDM physician group trainings are high, making it hard to convince physicians to participate. With this in mind, we aim to develop and evaluate two new dissemination strategies for a brief, SDM training program based upon a proven SDM group-training concept: an individualized context-based SDM face-to-face training (IG I) and a web-based interactive SDM online training (IG II). We aim to analyze which improvements can be achieved by IG I and II compared to a control group (CG) in physician SDM competence and performance as well as the impact on the physician-patient relationship. Furthermore, we analyze differences in satisfaction concerning the two dissemination strategies by means of a training evaluation. Methods/design: We examine – based on a three-armed randomized controlled trial (IG I, IG II, CG) – the effectiveness of two new dissemination strategies for a SDM training program compared to a CG receiving no SDM training (voluntary access to SDM training as an incentive for participation after completion of the study). We aim to include 162 physicians randomized to one of the three arms. There will be two assessment points in time (before intervention: T0 and post-training: T1). The main outcome is the SDM competence of physicians as measured by an established observational assessment rating system (OPTION-12) by means of consultations with Standardized Patients. Standardized Patients are individuals trained to act as “real” patients. Secondary outcome measures are the SDM performance (SDM-Q-9) and the Questionnaire on the Quality of Physician-Patient-Interaction (QQPPI) both rated by Standardized Patients as well as the physicians’ training evaluation. Discussion: This trial will assess the effectiveness and acceptability of two new dissemination strategies for a brief, SDM training program for physicians. Opportunities and challenges regarding implementation in daily routines will be discussed. Trial registration: ClinicalTrials.gov, Identifier: NCT02674360. Prospectively registered on 4 February 2016

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

How Communication Failed or Saved the Day : Counterfactual Accounts of Medical Errors

Communication breakdowns among clinicians, patients, and family members can lead to medical errors, yet effective communication may prevent such mistakes. This investigation examined patients\u27 and family members\u27 experiences where they believed communication failures contributed to medical errors or where effective communication prevented a medical error ( close calls ). The study conducted a thematic analysis of open-ended responses to an online survey of patients\u27 and family members\u27 past experiences with medical errors or close calls. Of the 93 respondents, 56 (60%) provided stories of medical errors, and the remaining described close calls. Two predominant themes emerged in medical error stories that were attributed to health care providers-information inadequacy (eg, delayed, inaccurate) and not listening to or being dismissive of a patient\u27s or family member\u27s concerns. In stories of close calls, a patient\u27s or family member\u27s proactive communication (eg, being assertive, persistent) most often saved the day. The findings highlight the importance of encouraging active patient/family involvement in a patient\u27s medical care to prevent errors and of improving systems to provide meaningful information in a timely manner

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

Abstract 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

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

ObjectiveTo 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.MethodsWe 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.ResultsParents 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.DiscussionParents 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

Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs

Parental cancer poses major challenges for families with minor children. Due to diagnosis and treatment family life is disrupted. To prevent long-term consequences in all family members and to design needs-oriented family-centered interventions, further understanding of the family's situation including the impact on the children, quality of life levels and the parental psychosocial needs is necessary. This study aims at investigating the impact of parental cancer on the minor children, family-specific psychosocial needs and quality of life levels of parents and children. Cancer patients parenting at least 1 minor child (<18 years) were eligible for study participation. In total, n=86 cancer patients under treatment participated in the study. After excluding participants without a minor child, 78 patients remained for analyses. We assessed children's quality of life using the parent proxy version of the KIDSCREEN-10 and parental quality of life using the EORTC QLQ C30 quality of life questionnaire. Additionally, the questionnaire comprised open questions about positive and negative changes parents perceived in their children as well as questions on specific family- and child-related psychosocial needs. The majority of participants were mothers (91%), mainly diagnosed with breast cancer (59%). The participating parents provided data on 117 minor children. Parents mentioned positive changes in 38% of the children (e.g., being more attentive and helpful). Negative changes were reported in 37% of the children (e.g., being more anxious and clingy). Parents reported family-specific psychosocial supportive care needs for themselves as a parent (e.g., support regarding parenting concerns), support needs for the partner or the children. Moreover, parents expressed family-related information needs and needs regarding practical aspects (e.g., childcare, household help). Global quality of life was M = 55.7 (SD = 23.4) for parents and M = 57.5 (SD = 15.5) for children. Pearson's correlation coefficient between parental and children's quality of life was 0.377 (p < 0.001). To identify parents with cancer and children in need for additional support, health care providers should proactively inquire about the impact of the disease on the children. In terms of a comprehensive cancer care, the direct assessment of family impact and family-specific support needs in cancer patients with minor children allows for needs-based allocation to support offers

Understanding Mental Burden and Factors Associated With Study Worries Among Undergraduate Medical Students During the COVID-19 Pandemic

The Coronavirus disease 2019 (COVID-19) pandemic is affecting many areas of life and has led to major changes in undergraduate medical education. Even before the COVID-19 pandemic, high mental burden of medical students has frequently been reported in the literature. Additional pandemic-specific stressors could exacerbate this situation. This study aimed to assess mental health outcomes among medical students during the first semester after the COVID-19 outbreak and perception of the students on how the learning environment has changed. In May 2020, we conducted a cross-sectional survey among undergraduate medical students at a large medical school in Germany. The survey included validated mental health instruments (Distress Thermometer, Patient Health Questionnaire 4) and self-developed items to examine the perception of the study situation during the COVID-19 pandemic. Open-ended questions were analyzed by conventional content analyses. The response rate was 59.2% (914/1,545). Overall, 61.9% of the students reported distress levels above the cutoff. Year 1 students reported significantly higher levels of distress, anxiety and depression than students during their second to fourth year of studies. 48.3% of the students indicated a decrease in their study motivation since the beginning of the COVID-19 pandemic with significant differences between study years. The binary logistic regression model showed that male gender, being in study year 2, higher distress scores and higher symptoms of depression were significantly associated with a higher likelihood for experiencing serious worries. In the open-ended questions on current concerns related to the impact of the COVID-19 pandemic on their studies, students most frequently reported concerns about missing relevant practical learning experience, difficulties with self-regulated learning and self motivation as well as study-related worries. Year 4 students reported significantly more worries about the lack of practical training than students from study years 1 to 3. Analysis of gender differences showed that female students reported more frequently diverse worries. In contrast, female students shared more frequently helpful strategies in all the categories compared to male students. Our findings suggest that medical students experience significant levels of distress and mental burden during the COVID-19 pandemic and highlight the need for ongoing psychological and educational support for medical students during the COVID-19 pandemic and after