Use of an Observational Coding System with Families of Adolescents: Psychometric Properties among Pediatric and Healthy Populations

Objective: To examine reliability and validity data for the Family Interaction Macro-coding System (FIMS) with adolescents with spina bifida (SB), adolescents with type 1 diabetes mellitus (T1DM), and healthy adolescents and their families.Methods: Sixty-eight families of children with SB, 58 families of adolescents with T1DM, and 68 families in a healthy comparison group completed family interaction tasks and self-report questionnaires. Trained coders rated family interactions using the FIMS.Results: Acceptable interrater and scale reliabilities were obtained for FIMS items and subscales. Observed FIMS parental acceptance, parental behavioral control, parental psychological control, family cohesion, and family conflict scores demonstrated convergent validity with conceptually similar self-report measures.Conclusions: Preliminary evidence supports the use of the FIMS with families of youths with SB and T1DM and healthy youths. Future research on overall family functioning may be enhanced by use of the FIMS

Patient, family and carers experiences of nutritional screening: a systematic review

BackgroundDespite recommendations for nutritional risk screening of all inpatients, outpatients, and care home residents, and work to assess clinician’s experiences and the validity of tools, little attention has been paid to the experiences of patients undergoing nutritional screening. This review aims to synthesise systematically the current evidence regarding patients, their families and carers experiences and views of nutritional risk screening.Methods A systematic search was performed in MEDLINE, Embase, PsychINFO, CINAHL, Web of Science and British Nursing Database (inception – July 2019); with screening terms related to malnutrition, screening tools and experience. Titles, abstracts, and full-text papers were independently reviewed by two reviewers, and quality-appraised. Qualitative papers and quantitative surveys were included. A narrative review of surveys and thematic framework synthesis of interviews were used to identify themes.Results Nine studies, including five qualitative interview papers, were included. Qualitative and quantitative study results were combined using a matrix chart to allow comparison. Surveyed participants reported processes of nutritional screening as acceptable. Three key themes emerged from qualitative data: 1) experience of nutritional screening; 2) misunderstanding of malnutrition; causes, role of screening, and poor self-perception of risk, and 3) barriers to and opportunities for change. Conclusion Although the screening process is acceptable, patients’ misunderstanding of, and poor knowledge regarding causes and consequences of malnutrition result in reduced risk perception and disbelief or disregard of nutritional screening results. Findings should inform policy and clinical practice, and highlight the known paucity of data regarding the effectiveness of screening on clinical outcomes

Optimising planned medical education strategies to develop learners' person-centredness: a realist review

Context: Person-centeredness is a stated aim for medical education; however, studies suggest this is not being achieved. There is a gap in our understanding of how, why and in what circumstances medical education interventions that aim to develop person-centredness are successful. Methods: A realist review was conducted with a search of Medline, Embase, HMIC and ERIC databases and the grey literature using the terms ‘medical education’ and ‘person-centred’ and related synonyms. Studies that involved a planned educational intervention in medical education with data on outcomes related to person-centredness were included. The analysis focused on how and why different educational strategies interact with biomedical learner perspectives to trigger mechanisms that may or may not lead to a change in perspective towards person-centredness. Results: Sixty-one papers representing fifty-three interventions were included in the final synthesis. Nine context–intervention–mechanism–outcome configuration (CIMOc) statements generated from the data synthesis make up our refined programme theory. Where educational interventions focused on communication skills learning or experiences without person-centred theory, learners experienced dissonance with their biomedical perspective which they resolved by minimising the importance of the learning, resulting in perspective endurance. Where educational interventions applied person-centred theory to meaningful experiences and included support for sense making, learners understood the relevance of person-centeredness and felt able to process their responses to learning, resulting in perspective transformation towards person-centredness. Conclusion: Our findings offer explanations as to why communication skills-based interventions may be insufficient to develop learners' person-centredness. Integrating experiential person-centred learning with theory on why person-centredness matters to clinical practice and enabling learners to make sense of their responses to learning, may support perspective transformation towards person-centredness. Our findings offer programme and policymakers testable theory to inform the development of medical education strategies that aim to support person-centredness

Physical activity and nutrition interventions for older adults with cancer: a systematic review

Purpose: The aim of this review was to summarize the current literature for the effectiveness of activity and nutritional based interventions on health-related quality of life (HRQoL) in older adults living with and beyond cancer (LWBC). Methods: We conducted systematic structured searches of CINAHL, Embase, Medline, Cochrane CENTRAL databases, and bibliographic review. Two independent researchers selected against inclusion criteria: (1) lifestyle nutrition and/or activity intervention for people with any cancer diagnosis, (2) measured HRQoL, (3) all participants over 60years of age and (4) randomized controlled trials. Results: Searches identified 5179 titles; 114 articles had full text review, with 14 studies (participant n = 1660) included. Three had nutrition and activity components, one, nutrition only and ten, activity only. Duration ranged from 7days to 1year. Interventions varied from intensive daily prehabilitation to home-based gardening interventions. Studies investigated various HRQoL outcomes including fatigue, general and cancer-specific quality of life (QoL), distress, depression, global side-effect burden and physical functioning. Eight studies reported significant intervention improvements in one or more QoL measure. Seven studies reported using a psychosocial/theoretical framework. There is a gap in tailored nutrition advice. Conclusions: Among the few studies that targeted older adults with cancer, most were activity-based programmes with half reporting improvements in QoL. Future research should focus on or include tailored nutrition components and consider appropriate behaviour change techniques to maximize potential QoL improvement. Implications for Cancer Survivors: More research is needed to address the research gap regarding older adults as current recommendations are derived from younger populations

Implementation of geriatric assessment in oncology settings: A systematic realist review

Older adults with cancer are more likely to have worse clinical outcomes than their younger counterparts, and shared decision-making can be difficult, due to both complexity from adverse ageing and under-representation in clinical trials. Geriatric assessment (GA) has been increasingly recognised as a predictive and prehabilitative tool for older adults with cancer. However, GA has been notoriously difficult to implement in oncological settings due to workforce, economic, logistical, and practical barriers. We aimed to review the heterogenous literature on implementation of GA in oncology settings to understand the different implementation context configurations of GA and the mechanisms they trigger to enable successful implementation. A systematic realist review was undertaken in two stages: i) systematic searches with structured data extraction combined with iterative key stakeholder consultations to develop programme theories for implementing GA in oncology settings; ii) synthesis to refine programme theories. Medline, Embase, PsycInfo, Cochrane Library, CINAHL, Web of Science, Scopus, ASSIA, Epistemonikos, JBI Database of Systematic Reviews and Implementation Reports, DARE and Health Technology Assessment were searched. Four programme theories were developed from 53 included articles and 20 key stakeholder consultations addressing the major barriers of GA implementation in oncology practice: time (leveraging non-specialists), funding (creating favourable health economics), practicalities (establishing the use of GA in cancer care), and managing limited resources. We demonstrate that a whole system approach is required to improve the implementation of GA in cancer settings. This review will help inform policy decisions regarding implementation of GA and provide a basis for further implementation research

Implementation lessons learnt when trialling palliative care interventions in the intensive care unit: relationships between determinants, implementation strategies, and models of delivery-a systematic review protocol

BACKGROUND: Heterogeneity amongst palliative care interventions in the intensive care unit (ICU) and their outcomes has meant that, even when found to be effective, translation of evidence into practice is hindered. Previous evidence reviews have suggested that the field of ICU-based palliative care would benefit from well-designed, targeted interventions, with explicit knowledge translation research demonstrating valid implementation strategies. Reviewing effectiveness studies alongside process evaluations for these interventions will give insight into the implementation barriers or constraints identified, and the implementation strategies adopted. METHODS: A systematic review to identify and synthesise knowledge on how models of integrating palliative care into the ICU have been implemented and provide critical recommendations for successful future development and implementation of complex interventions in the field. The search will be carried out using MEDLINE, Embase, Cochrane, CINAHL, and PsycINFO. The search strategy will combine terms related to palliative care, intensive care, and implementation. Only full-text articles will be considered and conference abstracts excluded. There will be no date or language restrictions. The Implementation Research Logic Model will be used as a framework for synthesis. Findings will be reported following the Preferred Reporting Items of Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DISCUSSION: This review will provide understanding of implementation facilitators, barriers, and strategies, when employing palliative care interventions within the ICU. This will provide valuable recommendations for successful future development of complex interventions using implementation frameworks or theories. This can increase the potential for sustained change in practice, reduce heterogeneity in interventions, and therefore help produce measurable and comparable outcomes. SYSTEMATIC REVIEW REGISTRATION: International Prospective Register of Systematic reviews PROSPERO (CRD42022311052)

Pediatric Health-Related Quality of Life: Feasibility, Reliability and Validity of the PedsQL™ Transplant Module

The measurement properties of the newly developed Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty-eight parents of children ages 2–18 and 274 children ages 5–18 completed both the PedsQL™ 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self-report and parent proxy-report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self-report α= 0.93; total scale score for parent proxy-report α= 0.94). Transplant-specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQL™ Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/79306/1/j.1600-6143.2010.03149.x.pd

Exploring pathways to optimise care in malignant bowel obstruction (EPOC): Protocol for a three-phase critical realist approach to theory-led intervention development for shared decision-making

Introduction Malignant bowel obstruction is a distressing complication of cancer, causing pain, nausea and vomiting, and often has a poor prognosis. Severe and rapidly developing symptoms, a lack of robust clinical guidelines and the need for multidisciplinary input make treatment decision-making challenging. Sharing decision-making with people with malignant bowel obstruction and their caregivers can be difficult, and inconsistent communication creates serious deficiencies in care by amplifying patients’ distress and uncertainty. Little attention has been paid to the implicit influences on this process–for example, the role of discipline-related norms and the beliefs of decision-makers. This study will explore how these processes work and develop interventions to improve shared decision-making. Methods and analysis Exploring Pathways to Optimise Care (EPOC) is a three-phase study set within a critical realist framework: (i) realist review, to develop explanatory theory describing collaborative decision-making in the management of malignant bowel obstruction; (ii) an in-depth interview study using modified grounded theory to explore the active ingredients of this collaboration in practice settings; and (iii) the presentation to stakeholders (practitioners, patients and caregivers) of integrated results from Phase I (theory developed from the literature) and Phase II (theory developed from current practice) as a basis for intervention mapping. We aim to produce recommendations to address the challenges, and to develop a set of tools to (i) aid interaction around shared decision-making and (ii) aid interprofessional interaction around the management of this condition

Long-Baseline Neutrino Facility (LBNF) and Deep Underground Neutrino Experiment (DUNE) Conceptual Design Report Volume 2: The Physics Program for DUNE at LBNF

The Physics Program for the Deep Underground Neutrino Experiment (DUNE) at the Fermilab Long-Baseline Neutrino Facility (LBNF) is described