Integrating Perspectives on Family Caregiving After Critical Illness: A Qualitative Content Analysis.

BACKGROUND: To date, no intervention has definitively improved outcomes for families of critical illness survivors. An integrated perspective on caregivers' needs after critical illness could help identify high-priority intervention targets and improve outcomes. OBJECTIVES: To obtain diverse perspectives on the needs, barriers and facilitators, and social determinants of health associated with family caregiving across the critical illness continuum and assess the extent to which successful caregiving interventions in other populations may be adapted to the critical illness context. METHODS: This qualitative content analysis of 31 semistructured interviews and 10 focus groups with family caregivers, health care providers, and health care administrators explored family caregivers' needs during post- intensive care unit (ICU) transitions and the barriers and facilitators associated with addressing them. Trained coders analyzed transcripts, identified patterns and categories among the codes, and generated themes. RESULTS: Caregivers have 3 instrumental needs: formal and informal support, involvement in care planning, and education and training. Only caregivers described their self-care and mental health needs. Social determinants of health are the key barriers and facilitators shaping the caregivers' journey, and caregiving as a social determinant of health was a prominent theme. CONCLUSIONS: Caregivers have instrumental, self-care, and mental health needs after critical illness. Adapting hands-on and skills training interventions to the post-ICU setting, while tailoring interventions to caregivers' health-related social context, may improve caregiver outcomes.

Differences in Home Health Services and Outcomes Between Traditional Medicare and Medicare Advantage.

Importance: Private Medicare Advantage (MA) plans recently surpassed traditional Medicare (TM) in enrollment. However, MA plans are facing scrutiny for burdensome prior authorization and potential rationing of care, including home health. MA beneficiaries are less likely to receive home health, but recent evidence on differences in service intensity and outcomes among home health patients is lacking. Objective: To examine differences in home health service intensity and patient outcomes between MA and TM. Design, Setting, and Participants: This cross-sectional study was conducted from January 2019 to December 2022 in 102 home health locations in 19 states and included 178 195 TM and 107 102 MA patients 65 years or older with 2 or fewer 60-day home health episodes. It included a secondary analysis of standardized assessment and visit data. Inverse probability of treatment weighting regression compared service intensity and patient outcomes between MA and TM episodes, accounting for differences in demographic characteristics, medical complexity, functional and cognitive impairments, social environment, caregiver support, and local community factors. Models included office location, year, and reimbursement policy fixed effects. Data were analyzed between September 2023 and July 2024. Exposure: TM vs MA plan. Main Outcomes and Measures: Home health length of stay and number of visits from nursing, physical, occupational, and speech therapy, social work, and home health aides. Patient outcomes included improvement in self-care and mobility function, discharge to the community, and transfer to an inpatient facility during home health. Results: Of 285 297 total patients, 180 283 (63.2%) were female; 586 (0.2%) were American Indian/Alaska Native, 8957 (3.1%) Asian, 28 694 (10.1%) Black, 7406 (2.6%) Hispanic, 1959 (0.7%) Native Hawaiian/Pacific Islander, 237 017 (83.1%) non-Hispanic White, and 678 (0.2%) multiracial individuals. MA patients had shorter home health length of stay by 1.62 days (95% CI, -1.82 to 1.42) and received fewer visits from all disciplines except social work. There were no differences in inpatient transfers. MA patients had 3% and 4% lower adjusted odds of improving in mobility and self-care, respectively (mobility odds ratio [OR], 0.97; 95% CI, 0.94-0.99; self-care OR, 0.96; 95% CI, 0.92-0.99). MA patients were 5% more likely to discharge to the community compared with TM (OR, 1.05; 95% CI, 1.01-1.08). Conclusions and Relevance: The results of this cross-sectional study suggest that MA patients receive shorter and less intensive home health care vs TM patients with similar needs. Differences may be due to the administrative burden and cost-limiting incentives of MA plans. MA patients experienced slightly worse functional outcomes but were more likely to discharge to the community, which may have negative implications for MA patients, including reduced functional independence or increased caregiver burden.

Understanding the Experiences of Family Caregivers of Nursing Home Residents With Dementia: A Grounded Theory Study.

BACKGROUND AND OBJECTIVES: Alzheimer's disease and related dementias progress over time and result in cognitive decline, loss of independence, and behavioral and psychiatric symptoms of dementia that can lead to nursing home placement. Research has focused on examining the effects of nursing home placement on the family caregiver; however, their experiences are less understood. We sought to investigate the experiences and perceptions of family caregivers of nursing home residents with dementia. The objective was to create a conceptual model that explains the complex nature of the family caregiver experience. RESEARCH DESIGN AND METHODS: This study is part of a larger randomized controlled trial. Following a grounded theory approach, we completed 30 in-depth, one-on-one interviews with family caregivers of nursing home residents with dementia. Data analysis followed an iterative process that employed open, axial, and selective coding. RESULTS: Our conceptual model depicts the interrelationship between contributing factors that interrelate and impact family caregiver satisfaction with nursing home care. Six factors contribute to family caregiver satisfaction: family caregiver interactions with nursing home staff; staff management of resident behavioral symptoms; nursing home context; family caregiver knowledge of dementia; family caregiver strain; and the resident experience. DISCUSSION AND IMPLICATIONS: Our findings revealed family caregiver experiences that are unique to the institutional nursing home setting and not reflected in prior work focusing on experiences within community-based settings. Understanding family caregiver experiences and the contributors to how satisfaction in care is perceived, may foster collaboration and teamwork among families and staff.

The Impact of State Dementia Training Requirements for Nursing Homes on Antipsychotic Medication Use.

OBJECTIVES: Nursing home (NH) staff often report not having adequate dementia-specific knowledge to effectively care for these residents. Between 2011 and 2019, 9 states in the United States implemented dementia training requirements for NH staff. This study evaluated whether the state-mandated dementia training for NH staff was associated with improving resident outcomes. DESIGN: Compared trends in antipsychotic medication before and after implementation of state training requirements to trends in states without requirements. SETTING AND PARTICIPANTS: NHs. METHODS: Data from Care Compare for NHs and LTCFocus were linked to state policy data. We excluded 14 states that had implemented training requirements before the start of the study period in 2011. We estimated difference-in-differences models that compared trends in antipsychotic medication use before and after implementation of training requirements in states that have newly implemented requirements to trends in states without requirements. We also investigated whether the impact of training was larger in states with more stringent training requirements (eg, specifying a minimum number of training hours) and in NHs with a special care unit for dementia and examined similar analyses for restraint use and falls. RESULTS: We found that training requirements were associated with a 0.59-percentage point reduction (95% CI -0.91 to -0.27) in antipsychotics use. Effects were larger in NHs with a special care unit for dementia and in states that had stricter training requirements. We also found that training requirements were associated with a 0.17-percentage point reduction (95% CI -0.26 to -0.07) in restraint use measure and had no impact on falls. CONCLUSIONS AND IMPLICATIONS: State requirements for NH staff dementia training were associated with a small, but significant, reduction in the use of antipsychotic medication and physical restraints.

Implementation of US Post-Acute Care Payment Reform and COVID-19 Policies: Examining Experiences of Health System Leaders, Staff, Patients, and Family Caregivers-A Protocol.

In fiscal year 2020, new national Medicare payment models were implemented in the two most common post-acute care settings (i.e., skilled nursing facilities (SNFs) and home health agencies (HHAs)), which were followed by the emergence of COVID-19. Given concerns about the unintended consequence of these events, this study protocol will examine how organizations responded to these policies and whether there were changes in SNF and HHA access, care delivery, and outcomes from the perspectives of leadership, staff, patients, and families. We will conduct a two-phase multiple case study guided by the Institute of Medicine's Model of Healthcare Systems. Phase I will include three cases for each setting and a maximum of fifty administrators per case. Phase II will include a subset of Phase I organizations, which are grouped into three setting-specific cases. Each Phase II case will include a maximum of four organizations. Semi-structured interviews will explore the perspectives of frontline staff, patients, and family caregivers (Phase II). Thematic analysis will be used to examine the impact of payment policy and COVID-19 on organizational operations, care delivery, and patient outcomes. The results of this study intend to develop evidence addressing concerns about the unintended consequences of the PAC payment policy during the COVID-19 pandemic.

Preferences on Delivery of Cancer Rehabilitation Services for Cancer-Related Disability Among Older Individuals Surviving Breast Cancer: A Qualitative Study.

Background: Older individuals surviving breast cancer often encounter cancer-related disability as a short-term or long-term effect of cancer and related treatment. Cancer rehabilitation interventions have the potential to prevent, mitigate, or remediate cancer-related disability. However, use of these services remains limited. Understanding the priorities and perspectives of older individuals surviving breast cancer is key to developing effective and implementable cancer rehabilitation interventions. This qualitative descriptive study examined individuals' preferred and valued methods of cancer rehabilitation intervention delivery. Methods: Using a qualitative descriptive design, older individuals surviving breast cancer (n=14) completed a single telephone-based semi-structure interview. Interviews explored survivors' preferences for cancer rehabilitation service delivery. Interview transcriptions were thematically analyzed. Open codes were inductively generated and reviewed for agreement by an independent reviewer. The codes were deductively organized. Differences were resolved through consensus meetings. Results: Findings revealed preferred intervention delivery characteristics for intervention setting, mode of delivery, format, and timing. Participants predominantly preferred interventions delivered in community-based settings, with both in-person and remote components. Participants also appeared to value one-on-one interventions and those delivered post-treatment. Survivors' overarching preferences were based on desire for patient-centric care, one-on-one therapist time, complex medical schedules, and financial concerns. Discussion: Study findings provide guidance on the modification of existing and creation of new cancer rehabilitation interventions addressing cancer-related disability in older individuals surviving breast cancer. Adoption of stakeholder-driven intervention delivery characteristics may improve value and acceptability of interventions. Future intervention research should incorporate and test these characteristics to ensure their effectiveness in real-world settings.

Evaluating non-pharmacological approaches to nursing home dementia care: A protocol.

Background: The COVID-19 pandemic has underscored the daily challenges nursing home (NH) staff face caring for the residents living with Alzheimer's Disease and Related Dementias (ADRD). Non-pharmacological approaches are prioritized over off-label medication to manage the behavioral and psychological symptoms of ADRD. Yet, it is not clear how to best equip NH staff and families with the knowledge and strategies needed to provide non-pharmacological approaches to these residents. Methods: This clustered randomized trial will compare team- and problem-based approaches to non-pharmacological ADRD care. The team-based approach includes core training for all NH staff using a common language and strategies to support continuity and sustainability. The problem-based approach capitalizes on the expertise of the professional healthcare providers to target issues that arise. A convergent mixed methods design will be used to examine (a) comparative effectiveness of the two approaches on long-term NH resident outcomes and (b) whether either approach is protective against the negative consequences of COVID-19. The primary outcome is the percentage of ADRD residents with off-label antipsychotic medication use, which will be evaluated with an intent-to-treat approach. Staff and family caregiver perspectives will be explored using a multiple case study approach. Conclusion: This trial will be the first-ever evaluation of team- and problem-based approaches to ADRD care across multiple NHs and geographic regions. Results can provide health system leaders and policymakers with evidence on how to optimize ADRD training for staff in an effort to enhance ADRD care delivery.

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention.

OBJECTIVE: The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. METHODS: An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. RESULTS: All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for "intervention characteristics," (2) Six themes for "process," (3) three themes for "inner setting," and (4) four themes for "outer setting." For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development ("intervention characteristics"). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes ("process"); and fostering a positive implementation climate ("inner setting"). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access ("outer setting"). CONCLUSION: Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

Care patterns and predictors of community residence among older patients after hospital discharge for traumatic brain injury.

BACKGROUND: An increasing number of older adults with traumatic brain injury (TBI) require hospitalization, but it is unknown whether they return to their community following discharge. We examined community residence following acute hospital discharge for TBI in Texas and identified factors associated with 90-day community residence and readmission. METHODS: We conducted a retrospective cohort study using 100% Texas Medicare claims data of patients older than 65 years hospitalized for a TBI from January 1, 2014, through December 31, 2017, and followed for 20 weeks after discharge. Discharges to short-term and long-term acute hospital, inpatient rehabilitation facility (IRF), skilled nursing facility (SNF), long-term nursing home (NH), and hospice were identified. The primary outcome was 90-day community residence. Our secondary outcome was 90-day, all-cause readmission. RESULTS: In Texas, 26,985 Medicare fee-for-service patients were hospitalized for TBI (Racial and ethnic minorities: 21.1%; Females 57.3%). At 90 days and 20 weeks following discharge, 80% and 84% were living in the community respectively. Female sex (OR = 1.16 [1.08-1.25]), Hispanic ethnicity (OR = 2.01 [1.80-2.25]), "other" race (OR = 2.19 [1.73-2.77]), and prior primary care provider (PCP; OR = 1.51 [1.40-1.62]) were associated with increased likelihood of 90-day community residence. Patients aged 75+, prior NH residence, dual eligibility, prior TBI diagnosis, and moderate-to-severe injury severity were associated with decreased likelihood of 90-day community residence. Being non-Hispanic Black (HR = 1.33 [1.20-1.46]), discharge to SNF (HR = 1.56 [1.48-1.65]) or IRF (HR = 1.49 [1.40-1.59]), having prior PCP (HR = 1.23 [1.17-1.30]), dual eligibility (HR = 1.11 [1.04-1.18]), and prior TBI diagnosis (HR = 1.05 [1.01-1.10]) were associated with increased risk of 90-day readmission. Female sex and "other" race were associated with decreased risk of 90-day readmission. CONCLUSIONS: Most older adults with TBI return to the community following hospital discharge. Disparities exist in returning to the community and in risk of 90-day readmission following hospital discharge. Future studies should explore how having a PCP influences post-hospital outcomes in chronic care management of older patients with TBI.

Examining Real-World Therapy Practice of Cognitive Screening and Assessment in Post-Acute Care.

OBJECTIVES: Routine implementation of cognitive screening and assessment by therapy providers in post-acute settings may promote improved care coordination. This study examined the frequency of cognitive screening and assessment documentation across post-acute settings, as well as its relationship with contextual factors and outcomes. DESIGN: Cross-sectional observational study using Medicare claims and electronic health record data from 1 large health system. SETTING AND PARTICIPANTS: Older adults admitted to post-acute care after an acute hospitalization. METHODS: Descriptive analysis examined documentation of cognitive screening and assessment. Logistic and hierarchical linear regression evaluated the relationship among patient factors, cognitive screening and assessment, and patient outcomes. RESULTS: The most common admission diagnoses for the final sample (n=2535) were total hip or knee joint replacement (41.7%) and stroke (15.3%). Following acute hospitalization, patients were discharged to inpatient rehabilitation (22.6%), skilled nursing (9.3%), or home health (68.1%). During the post-acute care stay, 38% of patients had documentation of cognitive screening by any therapy discipline. Patterns of documentation varied across disciplines and post-acute settings. Documentation of standardized cognitive assessments was limited, occurring for less than 2% of patients. Admission for stroke was associated with significantly higher odds of cognitive screening or assessment [odds ratio (OR) 2.07, 95% CI 1.13, 3.82] compared to patients with other diagnoses. There was no significant relationship between documentation of cognitive screening or assessment and 30-day readmissions (OR 0.81, 95% CI 0.53, 1.28). CONCLUSION AND IMPLICATIONS: The key finding was inconsistent documentation of cognitive screening and assessment across disciplines and post-acute settings, which could be in part due to variation in electronic health record platforms. Future work can expand on these results to understand the degree to which contextual factors facilitate or inhibit routine delivery and documentation of cognitive screening and assessment. Findings can support implementation of standardized data elements to lead to improved care coordination and outcomes.

Dual impacts of Medicare payment reform and the COVID-19 pandemic on therapy staffing in skilled nursing facilities.

BACKGROUND: Implementation of new skilled nursing facility (SNF) Medicare payment policy, the Patient Driven Payment Model (PDPM), resulted in immediate declines in physical and occupational therapy staffing. This study characterizes continuing impacts of PDPM in conjunction with COVID-19 on SNF therapy staffing and examines variability in staffing changes based on SNF organizational characteristics. METHODS: We analyzed Medicare administrative data from a national cohort of SNFs between January 2019 and March 2022. Interrupted time series mixed effects regression examined changes in level and trend of total therapy staffing minutes/patient-day during PDPM and COVID-19 and by type of staff (therapists, assistants, contractors, and in-house staff). Secondary analyses examined the variability in staffing by organizational characteristics. RESULTS: PDPM resulted in a -6.54% level change in total therapy staffing, with larger declines for assistants and contractors. Per-patient staffing fluctuated during COVID-19 as the census changed. PDPM-related staffing declines were larger in SNFs that were: Rural, for-profit, chain-affiliated, provided more intensive therapy, employed more therapy assistants, and admitted more Medicare patients before PDPM. COVID-19 resulted in larger staffing declines in rural SNFs but smaller early declines in SNFs that were hospital-based, for-profit, or received more relief funding. CONCLUSIONS: SNFs that historically engaged in profit-maximizing behaviors (e.g., providing more therapy via lower-paid assistants) had larger staffing declines during PDPM compared to other SNFs. Therapy staffing fluctuated during COVID-19, but PDPM-related reductions persisted 2 years into the pandemic, especially in rural SNFs. Results suggest specific organizational characteristics that should be targeted for staffing and quality improvement initiatives.

Alternative Designs for Testing Speech, Language, and Hearing Interventions: Cluster-Randomized Trials and Stepped-Wedge Designs.

PURPOSE: Individual-randomized trials are the gold standard for testing the efficacy and effectiveness of drugs, devices, and behavioral interventions. Health care delivery, educational, and programmatic interventions are often complex, involving multiple levels of change and measurement precluding individual randomization for testing. Cluster-randomized trials and cluster-randomized stepped-wedge trials are alternatives where the intervention is allocated at the group level, such as a clinic or a school, and the outcomes are measured at the person level. These designs are introduced along with the statistical implications of similarities among individuals within the same cluster. We also illustrate the parameters that have the most impact on the likelihood of detecting intervention effects, which must be considered when planning these trials. CONCLUSION: Cluster-randomized and stepped-wedge designs should be considered by researchers as experimental alternatives to individual-randomized trials when testing speech, language, and hearing care interventions in real-world settings.

Development of an intervention influencing activity limitations in older breast cancer survivors: A modified Delphi study.

INTRODUCTION: Older breast cancer survivors have difficulty accessing rehabilitation interventions addressing activity limitations. Stakeholder input may improve accessibility of interventions. We sought expert consensus on intervention content and delivery features (e.g., where, mode, duration) to inform development of more accessible interventions for this population. MATERIALS AND METHODS: We conducted a modified Delphi process with patient, clinical, administrative, and research experts. In Round 1, experts evaluated content and delivery features according to domains of feasibility and prioritization. In Round 2, panelists were asked to re-rank or confer agreement of content and delivery features that met Round 1 consensus. Ranking was based on median score. Consensus was defined as a percentage of panelists that ranked an option within one unit of the median. For nominal data, consensus was defined as percent agreement. RESULTS: Panelists (n = 20) prioritized physical activity strategies (Median Rank: 2; Consensus: 85%) and adaptive skills training (3; 65%). Panelists also prioritized delivery through outpatient services (1; 100%), post-treatment (1; 100%), combination mode of delivery (100%), duration of three months or less (100%) and occurring one to two days per week (100%). DISCUSSION: Cancer rehabilitation interventions should be designed with input from stakeholders. The stakeholder intervention priorities identified in this study (e.g., content, setting, and mode) may improve relevance and accessibility of future cancer rehabilitation interventions. Interventions delivered in outpatient clinics and post-treatment using virtual and in-person visits may improve accessibility. Future research should examine the effectiveness and implementation of these intervention characteristics.

Optimizing Post-Acute Care Patient Safety: A Scoping Review of Multifactorial Fall Prevention Interventions for Older Adults.

Accidental falls are preventable adverse events for older post-acute care (PAC) patients. Yet, due to the functional and medical care needs of this population, there is little guidance to inform multidisciplinary prevention efforts. This scoping review aims to characterize the evidence for multifactorial PAC fall prevention interventions. Of the 33 included studies, common PAC intervention domains included implementing facility-based strategies (e.g., staff education), evaluating patient-specific fall risk factors (e.g., function), and developing an individualized risk profile and treatment plan that targets the patient's constellation of fall risk factors. However, there was variability across studies in how and to what extent the domains were addressed. While further research is warranted, health system efforts to prevent accidental falls in PAC should consider a patient-centered multifactorial approach that fosters a culture of safety, addresses individuals' fall risk, and champions a multidisciplinary team.

Barriers and facilitators to resuming meaningful daily activities among critical illness survivors in the UK: a qualitative content analysis.

OBJECTIVE: To identify critical illness survivors' perceived barriers and facilitators to resuming performance of meaningful activities when transitioning from hospital to home. DESIGN: Secondary content analysis of semistructured interviews about patients' experiences of intensive care (primary analysis disseminated on the patient-facing website www.healthtalk.org). Two coders characterised patient-perceived barriers and facilitators to resuming meaningful activities. To facilitate clinical application, we mapped the codes onto the Person-Task-Environment model of performance, a patient-centred rehabilitation model that characterises complex interactions among the person, task and environment when performing activities. SETTING: United Kingdom, 2005-2006. PARTICIPANTS: 39 adult critical illness survivors, sampled for variation among demographics and illness experiences. RESULTS: Person-related barriers included negative mood or affect, perceived setbacks; weakness or limited endurance; pain or discomfort; inadequate nutrition or hydration; poor concentration/confusion; disordered sleep/hallucinations/nightmares; mistrust of people or information; and altered appearance. Task-related barriers included miscommunication and managing conflicting priorities. Environment-related barriers included non-supportive health services and policies; challenging social attitudes; incompatible patient-family coping (emotional trauma and physical disability); equipment problems; overstimulation; understimulation; and environmental inaccessibility. Person-related facilitators included motivation or attitude; experiencing progress; and religion or spirituality. Task-related facilitators included communication. Environment-related facilitators included support from family, friends or healthcare providers; supportive health services and policies; equipment; community resources; medications; and accessible housing. Barriers decreased and facilitators increased over time. Six barrier-facilitator domains dominated based on frequency and emphasis across all performance goals: mood/motivation, setbacks/progress, fatiguability/strength; mis/communication; lack/community support; lack/health services and policies. CONCLUSIONS: Critical illness survivors described a comprehensive inventory of 18 barriers and 11 facilitators that align with the Person-Task-Environment model of performance. Six dominant barrier-facilitator domains seem strong targets for impactful interventions. These results verify previous knowledge and offer novel opportunities for optimising patient-centred care and reducing disability after critical illness.

Operationalizing Stakeholder Engagement Through the Stakeholder-Centric Engagement Charter (SCEC).

There is a need for clear strategies and procedures to operationalize stakeholder engagement in research studies. Clear guidelines that promote shared leadership among study investigators and research stakeholders are important for inclusive and sustainable partnerships. Such guidelines may take the form of a governance charter and can be a means for encouraging the participation and inclusion of stakeholders who may have little to no experience with research or are otherwise underrepresented in research. This perspective article presents the Stakeholder-Centric Engagement Charter (SCEC), one effort to operationalize a stakeholder engagement approach between researchers and an advisory committee as guided by the Patient-Centered Outcomes Research Institute's (PCORI) Research Engagement Principles (i.e., reciprocal relationships, partnerships, co-learning, transparency-honesty-trust). Building on the SCEC can help future investigators develop a study-specific, dynamic, governance document outlining advisory committee and research team preferences in areas such as role expectations, study governance, and decision-making procedures.

Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol.

INTRODUCTION: Early intervention (EI) endorses family-centred and participation-focused services, but there remain insufficient options for systematically enacting this service approach. The Young Children's Participation and Environment Measure electronic patient-reported outcome (YC-PEM e-PRO) is an evidence-based measure for caregivers that enables family-centred services in EI. The Parent-Reported Outcomes for Strengthening Partnership within the Early Intervention Care Team (PROSPECT) is a community-based pragmatic trial examining the effectiveness of implementing the YC-PEM e-PRO measure and decision support tool as an option for use within routine EI care, on service quality and child outcomes (aim 1). Following trial completion, we will characterise stakeholder perspectives of facilitators and barriers to its implementation across multiple EI programmes (aim 2). METHODS AND ANALYSIS: This study employs a hybrid type 1 effectiveness-implementation study design. For aim 1, we aim to enrol 223 caregivers of children with or at risk for developmental disabilities or delays aged 0-3 years old that have accessed EI services for three or more months from one EI programme in the Denver Metro catchment of Colorado. Participants will be invited to enrol for 12 months, beginning at the time of their child's annual evaluation of progress. Participants will be randomised using a cluster-randomised design at the EI service coordinator level. Both groups will complete baseline testing and follow-up assessment at 1, 6 and 12 months. A generalised linear mixed model will be fitted for each outcome of interest, with group, time and their interactions as primary fixed effects, and adjusting for child age and condition severity as secondary fixed effects. For aim 2, we will conduct focus groups with EI stakeholders (families in the intervention group, service coordinators and other service providers in the EI programme, and programme leadership) which will be analysed thematically to explain aim 1 results and identify supports and remaining barriers to its broader implementation in multiple EI programmes. ETHICS AND DISSEMINATION: This study has been approved by the institutional review boards at the University of Illinois at Chicago (2020-0555) and University of Colorado (20-2380). An active dissemination plan will ensure that findings have maximum reach for research and practice. TRIAL REGISTRATION NUMBER: NCT04562038.

Physical and Occupational Therapy Staffing Patterns in Nursing Homes and Their Association with Long-stay Resident Outcomes and Quality of Care.

The purpose of this study is to examine Physical Therapy (PT) and Occupational Therapy (OT) staffing patterns in nursing homes and understand their relationship with quality performance. Bivariate analyses between PT/OT staffing and facility characteristics were performed to understand staffing patterns and random effects regressions were run to explore the link between therapy staff and quality. Findings suggest PT/OT staff have a positive influence on resident outcomes and therapy staffing patterns significantly differ across provider attributes, including size, profit status, and occupancy rate, among others. The findings can be used to inform policymakers about potential unintended consequences resulting from changes to Medicare reimbursement policies.

Impact of non-pharmacological interventions on activity limitations and participation restrictions in older breast cancer survivors: A scoping review.

Cancer-related disability is a complex problem for older breast cancer survivors. One aspect of cancer-related disability is a survivor's inability to complete meaningful daily activities and engage in life roles, referred to as activity limitations and participation restrictions respectively. There is a limited understanding of how interventions influence activity limitations and participation restrictions in this population. A scoping review was undertaken to identify and characterize nonpharmacological interventions developed to address activity limitations and participation restrictions. A systematic search of electronic databases (Ovid Medline, Embase, EBSCO CINAHL, and Ovid PsycINFO) was conducted in April 2020 and updated October 2020. Eleven studies met inclusion criteria. Most frequently observed delivery features were in-person and one-on-one format. Six interventions incorporated telehealth delivery components. Interventions were often complex and varied in content. Exercise and behavioral strategies were among the most frequently used active ingredients. Activity limitations and participation restrictions were often secondary outcomes, and measures of these outcomes were varied in content and assessment method. Study samples were not representative of the current population of older adult breast cancer survivors. Future intervention research should clarify intervention delivery, content, and dose, prioritize comprehensive measurement of activity limitations and participation restrictions, as well as recruit and involve representative study samples to enhance generalizability of findings.

A Systematic Review of Tools Assessing the Perspective of Caregivers of Residents With Dementia.

In collaboration with stakeholders, we conducted a systematic review of psychometric evidence for self-report tools measuring the perspective of family caregivers of nursing home residents with dementia. Our rationale for this review was based on evidence that nonpharmacological interventions can ameliorate dementia symptoms in nursing home residents. Such interventions require caregiver participation, which is influenced by perspectives. Yet, no existing tool measures the multidomain caregiver perspective. Our review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol. The final sample included 42 articles describing 33 tools measuring domains of nursing home dementia care such as behavioral and psychological symptoms of dementia, resident quality of life, dementia-specific knowledge, communication, and medication use. We uncovered evidence gaps for tools measuring dementia-specific knowledge, communication, and medication use, all of which were important to our stakeholders. Future research should focus on development of psychometrically sound tools in alignment with the multidomain caregiver perspective.