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Objective: To describe innovative models of psychosocial care delivery that align with published Standards of Psychosocial Care of Children with Cancer and their Families, in efforts to bridge the divide between research and practice., Methods: The Mattie Miracle Cancer Foundation, in partnership with the American Psychosocial Oncology Society reviewed 22 letters of intent and 13 full grants and awarded small grants to researchers with high quality projects that aimed to implement any of the published 15 Standards of Care. For three of the highest rated funded research projects, we describe the Standard implemented, the novel research design and implementation strategies, and how the research findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps., Results: The first study presented is an innovative eHealth intervention for parents of children with cancer designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults with leukemia, and the third creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers., Conclusions: Several themes emerged from the studies presented, including (1) attention to barriers to previous attempts at implementation; (2) technology's role in delivering care; (3) the need for stakeholder involvement; and (4) consideration for multi-pronged solutions that address heterogeneity in care settings. Next steps for integrating the Standards of Psychosocial Care into clinical practice are discussed., (© 2020 John Wiley & Sons Ltd.)

Objective: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology., Methods: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n = 12) and bereaved family members (n = 26) on when and how to effectively implement bereavement risk screening. Data were analyzed using thematic analysis., Results: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support., Conclusions: The findings suggest that family members appear supportive of sensitively approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care., (© 2020 John Wiley & Sons, Ltd.)

Objective: While screening for psychosocial distress is now the standard of care in oncology, little guidance is available on how best to deliver services in response to identified needs. The American Psychosocial Oncology Society (APOS) convened a task force with the goal of creating a framework that could aid in planning services and justifying requests for resources., Methods: Ten experts from multiple disciplines within psychosocial oncology served on the task force, first meeting together as a larger group over 2 days to set an agenda and then subsequently working in smaller teams to execute the goals. The task force used consensus methods for developing recommendations., Results: Three principles were identified for the framework. First, psychosocial oncology is a key component of population health, and population-based approaches to care delivery are required. Second, several key parameters shape psychosocial oncology services: resources, aims, and scope. To guide resource allocation, example priorities were identified for the aims and scope of services. Finally, cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care. A range of practices was ranked by their potential contributions to achieving that goal., Conclusions: This framework may aid in planning, evaluating, and refining the delivery of responsive psychosocial oncology services., (© 2020 John Wiley & Sons, Ltd.)

Objective: To describe levels of loneliness in cancer caregivers over a 6 month time period, and to examine factors that influence changes in loneliness in caregivers over time., Methods: Prospective, repeated measures design was utilized to examine levels of loneliness and factors that influence loneliness in 129 family caregivers of individuals undergoing cancer treatment at three time points over a 6 month period. Measures included: PROMIS global health and sleep disturbance; NIH Toolbox loneliness, self-efficacy and perceived stress; Family Care Inventory mutuality scale; and Caregiver Reaction Assessment., Results: Approximately one third (30.2%, n = 39) of the caregivers had high levels of loneliness, and levels of loneliness did not change over the three time points (P = .985). For any given time point, caregivers who were not married (P = .008), not working (P = .027), with worse mental health (P = .015), more perceived-stress (P < .0001), and more caregiver burden (P = .003) reported higher levels of loneliness., Conclusion: This study provides guidance for clinicians attempting to identify at-risk caregivers by confirming the findings of previous research that caregivers with higher burden, stress and in poor mental health are at increased risk for loneliness. This study provides preliminary evidence that continuing to work during the caregiving trajectory may be beneficial to caregivers by reducing levels of loneliness. Future research is needed to confirm these findings and to examine novel interventions to reduce loneliness in cancer caregivers., (Published 2020. This article is a U.S. Government work and is in the public domain in the USA.)

Objective: This paper presents data on licensure/certification status, supervision of multidisciplinary pediatric psychosocial staff, and training opportunities in pediatric cancer programs in the United States, data that are critical to provide care aligned with the Standards of Psychosocial Care in Pediatric Cancer (Psychosocial Standards)., Methods: An online survey of psychosocial care consistent with the Psychosocial Standards was completed from a national sample of pediatric cancer programs (144/200). Licensure/certification status, availability and format of supervision for multidisciplinary staff (social workers, psychologists, psychiatrists, child life specialists/recreational therapists), and types and number of psychosocial trainees were reported., Results: Nearly all pediatric psychosocial providers were licensed/certified. Peer consultation was the most frequently endorsed form of staff supervision although a sizeable group of centers reported no systematic ongoing supervision. Trainees in social work and child life were most common although the size of trainee cohorts is generally small. Psychosocial trainees are more prevalent in sites with pediatric hematology/oncology medical fellowship programs and in larger programs., Conclusions: A properly trained and supported psychosocial workforce is essential to providing evidence-based care consistent with the Psychosocial Standards. Psychosocial providers are appropriately licensed. However, supervision opportunities are variable and may be inadequate for the intensity of the work. It is important to address the limited opportunities for trainees in pediatric cancer programs, which may influence the pipeline for ongoing and future work in this area., (© 2018 John Wiley & Sons, Ltd.)

Objective: When a child is diagnosed with cancer, parents are faced with many practical and emotional challenges that can significantly affect their relationship. This study explores how having a child with cancer affects the quality of the parents' relationship, categorizes time points and events during the child's treatment when the relationship becomes most stressed and/or strengthened, identifies factors that help couples remain emotionally engaged throughout their child's cancer treatment, and assesses parental interest in a counseling intervention., Methods: This is a cross-sectional, multicenter study conducted via a semistructured self-administered questionnaire that included the Revised Dyadic Adjustment Scale., Results: One hundred ninety-two parents of children diagnosed between the ages of 1 and 21 participated. Forty percent felt their relationship moved in a negative direction. Diagnosis and relapse of disease were cited as the most individually stressful time points in the disease trajectory, with hospitalizations and relapse being most stressful on the relationship. Participants felt most emotionally connected at diagnosis and least emotionally connected at the start and end of treatment. The majority of couples indicated interest in counseling to address ways to support their relationship. Soon after diagnosis and during treatment was reported as the preferred time to offer these interventions., Conclusion: This study identified specific events and parent behaviors that strain the couples' relationship during the childhood cancer trajectory. This information can inform the development of a couple's intervention. Prospective research is needed to better understand how childhood cancer affects caregivers' partnerships through survivorship and beyond., (Copyright © 2016 John Wiley & Sons, Ltd.)

Objective: Psychosocial distress is under-recognized in children with cancer and other serious medical illnesses because of a focus on pressing medical concerns., Aims: This study assessed the validity, inter-rater reliability, sensitivity/specificity, acceptability, and feasibility of administration of a pediatric distress thermometer (DT) designed to screen for the presence of psychosocial distress in youth with serious medical illnesses., Materials & Methods: Two hundred eighty-one patient-caregiver-provider triads were enrolled from two hospital outpatient clinics. Patients diagnosed with cancer and other life-threatening diseases, caregivers, and providers completed the DT and a DT acceptability rating. Patients and caregivers completed standardized measures of anxiety, depression, pain, and fatigue. Providers completed a measure of disease severity. Data collectors completed a feasibility rating., Results: The DT was significantly correlated with both caregiver and patient reports of depression, anxiety, pain, and fatigue, exhibiting concurrent validity. Parent, child, and caregiver report demonstrated significant, moderate inter-rater reliability, with lower concordance between raters in the youngest age group. The DT is a sensitive instrument for screening of psychosocial distress when compared with the selected gold standard (Brief Symptom Inventory 18 depression subscale and the Children's Depression Inventory). The DT is not highly specific but quickly identifies those in need of further psychosocial assessment., Discussion: Screening, using an adapted pediatric DT, is valid, feasible, and acceptable to patients, caregivers, and medical providers across chronic medical illnesses., Conclusion: As patient and caregiver reports are not always concordant, both patient and caregiver report of distress are important for the provider to obtain clinically meaningful information to guide interventions. Published 2015. This article is a U.S. Government work and is in the public domain in the USA., (Published 2015. This article is a U.S. Government work and is in the public domain in the USA.)

Objectives: Burnout is a significant problem among healthcare professionals working within the oncology setting. This study aimed to investigate predictors of emotional exhaustion (EE) and depersonalisation (DP) in psychosocial oncologists, through the application of the effort-reward imbalance (ERI) model with an additional focus on the role of meaningful work in the burnout process., Methods: Psychosocial oncology clinicians (n = 417) in direct patient contact who were proficient in English were recruited from 10 international psychosocial oncology societies. Participants completed an online questionnaire, which included measures of demographic and work characteristics, EE and DP subscales of the Maslach Burnout Inventory-Human Services Survey, the Short Version ERI Questionnaire and the Work and Meaning Inventory., Results: Higher effort and lower reward were both significantly associated with greater EE, although not DP. The interaction of higher effort and lower reward did not predict greater EE or DP. Overcommitment predicted both EE and DP but did not moderate the impact of effort and reward on burnout. Overall, the ERI model accounted for 33% of the variance in EE. Meaningful work significantly predicted both EE and DP but accounted for only 2% more of the variance in EE above and beyond the ERI model., Conclusions: The ERI was only partially supported as a useful framework for investigating burnout in psychosocial oncology professionals. Meaningful work may be a viable extension of the ERI model. Burnout among health professionals may be reduced by interventions aimed at increasing self-efficacy and changes to the supportive work environment., (Copyright © 2015 John Wiley & Sons, Ltd.)

Objective: The aim of this study was to identify existing guidelines, standards, or consensus-based reports for psychosocial care of children with cancer and their families., Purpose: Psychosocial standards of care for children with cancer can systematize the approach to care and create a replicable model that can be utilized in pediatric hospitals around the world. Determining gaps in existing standards in pediatric psycho-oncology can guide development of useful evidence-based and consensus-based standards., Methods: The MEDLINE and PubMed databases were searched by investigators at two major pediatric oncology centers for existing guidelines, consensus-based reports, or standards for psychosocial care of patients with pediatric cancer and their families published in peer-reviewed journals in English between 1980 and 2013., Results: We located 27 articles about psychosocial care that met inclusion criteria: 5 set forth standards, 19 were guidelines, and 3 were consensus-based reports. None was sufficiently up to date, comprehensive, specific enough, or evidence- or consensus-based to serve as a current standard for psychosocial care for children with cancer and their families., Conclusion: Despite calls by a number of international pediatric oncology and psycho-oncology professional organizations about the urgency of addressing the psychosocial needs of the child with cancer to reduce suffering, there remains a need for development of a widely acceptable, evidence-based and consensus-based, comprehensive standard of care to guide provision of essential psychosocial services to all patients with pediatric cancer., (Published 2014. This article is a U.S. Government work and is in the public domain in the USA.)

During the past 30 years, there has been an increase in the incidence of cancer in adolescents. While recent studies have illustrated remarkable resilience in youth living with cancer, they can also face daunting acute and chronic adjustment struggles, cognitive and school problems, family and peer relational difficulties, depression, post-traumatic stress symptoms, and other anxiety disorders. Mindfulness-based interventions (MBIs), increasingly shown to be effective in a variety of medical and mental health settings, may be particularly beneficial for adolescents with cancer. This paper reviews evidence from clinical trials of MBIs showing a variety of benefits for adult cancer patients, adolescents with anxiety disorders and chronic pain, and clinically healthy teenagers, which collectively point to likely benefits of MBIs for teen cancer patients. The authors also explore ways that the particular psychological problems often faced by teen cancer patients, including anxiety about the future, may be especially well suited to mindfulness approaches such as learning to observe physical sensations, thoughts, and emotions, as well as cultivating compassion towards themselves and others. The paper concludes with an exploration of unanswered and potential research questions regarding the future use of MBIs with adolescents with cancer, and potentially with teenagers with other chronic diseases., (Copyright © 2013 John Wiley & Sons, Ltd.)

Background: Thirty years after the origin of the field of psycho-oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families., Method: A survey was designed to assess training, work environment, theoretical orientation, services provided, subspecialty areas or areas of special interest, satisfactions, challenges, and continuing education needs of pediatric psycho-oncologists. Members of national and international psycho-oncology organizations were invited to participate in the web-based survey., Results: Seven hundred eighty-six professionals from 63 countries responded. The sample consisted mostly of psychologists (41%), physicians (20%), and social workers (14%). Approximately half of the participants worked in a designated psycho-oncology unit. Psychologists and social workers provided the majority of psychosocial services. Individual sessions with parents were most common (42%), followed by sessions with children (41%), survivors (36%), families (31%), and siblings (25%). Therapies provided include cognitive behavioral therapy (50%), relaxation (43%), psychodynamic psychotherapy (27%), play therapy (26%), and imagery (23%). Two-thirds reported having appropriate supervision, 37% were conducting research, and only half felt their salary was appropriate. Differences in therapeutic modalities were found by country. Clinicians desire training on clinical interventions, improving communication with medical staff, research, and ethics., Conclusions: An international cohort of clinicians providing pediatric psycho-oncology services perform a wide variety of tasks, use a range of therapeutic approaches, and report considerable work satisfaction. Problem areas include professional inter-relations, inadequate supervision, and need for additional specialized training. Opportunity exists for global collaboration in pediatric psycho-oncology research and practices to enhance clinical effectiveness and reduce professional isolation., (Copyright © 2012 John Wiley & Sons, Ltd.)

Background: The long-term psychological impact of pediatric sarcoma is largely unknown. As part of a cross-sectional study examining the late effects of pediatric sarcoma therapy, we examined whether psychological distress or posttraumatic stress symptoms are present in an adult cohort of pediatric sarcoma survivors., Method: Thirty-four patients participated in the study, an average of 17 years after their treatment ended, each completing the SCID module for Posttraumatic Stress Disorder, Impact of Events Scale, Brief Symptom Inventory (BSI) and a questionnaire assessing sociodemographic variables and psychosocial issues., Results: Significant persistent psychological distress characterized this cohort of patients. Seventy-seven percent scored in the clinical range on the BSI. Twelve percent met diagnostic criteria for PTSD. Current psychological distress was associated with intrusive thoughts and avoidant behaviors, male gender, employment, difficulty readjusting to work/school after treatment, and enduring worries about health. No differences were found based on age, presence of metastatic disease or time since diagnosis., Conclusions: This is the first report of a clinical evaluation of psychological distress in a cohort of pediatric sarcoma survivors treated with intensive multimodal cancer therapy. The results suggest that survivors of pediatric sarcoma might be at high risk for adverse psychological outcomes. Appropriate interventions are proposed.