Caregiver Strategy Use to Promote Children's Home Participation After Pediatric Critical Illness

ObjectivesThe primary objectives are to assess the most common type of caregiver strategy (remedial vs compensatory) reported for supporting their child’s home participation after critical illness and identify themes in compensatory strategies described, with a secondary objective to describe themes in strategy use as reported by caregivers of children who did and did not receive pediatric intensive care unit (PICU) rehabilitation services.DesignQualitative substudy of the Wee-Cover prospective cohort study.SettingTwo PICU sites.ParticipantsWee-Cover enrolled caregivers (N=180) of children 1-17 years of age, who were admitted to a PICU for ≥48 hours. This study excluded participants missing relevant data (n=12).InterventionNot applicable.Main Outcome MeasuresQualitative data were gathered from open-ended questions on strategies within the Participation and Environment Measure at PICU discharge and 3 and 6 months post-PICU discharge. Strategies were classified as remedial or compensatory pending their content fit with 1 of 5 environmental chapters in the International Classification of Functioning, Disability, and Health–Children and Youth Version. Data on PICU-based rehabilitation services were obtained prospectively from electronic medical records and dichotomized (yes or no).ResultsMost caregiver strategies were compensatory, with more than half (60%) of the strategies pertaining to fostering supportive relationships. In contrast, strategies addressing the child’s natural environment (12%), services (3%), and attitudes of others in the home (1%) were least commonly described. Similar themes were identified for caregivers whose children did and did not receive PICU rehabilitation services.ConclusionsCaregivers identify a range of strategies to facilitate their child’s participation in home activities post-PICU discharge, but primarily report on strategies for addressing supports and relationships in the child’s home environment. Results highlight areas warranting caregiver education to support the child’s participation after critical illness.     

State of the science on postacute rehabilitation: setting a research agenda and developing an evidence base for practice and public policy: an introduction

The Rehabilitation Research and Training Center on Measuring Rehabilitation Outcomes and Effectiveness along with academic, professional, provider, accreditor and other organizations, sponsored a 2-day State-of-the-Science of Post-Acute Rehabilitation Symposium in February 2007. The aim of this symposium was to serve as a catalyst for expanded research on postacute care (PAC) rehabilitation so that health policy is founded on a solid evidence base. The goals were to: (1) describe the state of our knowledge regarding utilization, organization and outcomes of postacute rehabilitation settings, (2) identify methodologic and measurement challenges to conducting research, (3) foster the exchange of ideas among researchers, policymakers, industry representatives, funding agency staff, consumers and advocacy groups, and (4) identify critical questions related to setting, delivery, payment and effectiveness of rehabilitation services. Plenary presentation and state-of-the-science summaries were organized around four themes: (1) the need for improved measurement of key rehabilitation variables and methods to collect and analyze this information, (2) factors that influence access to postacute rehabilitation care, (3) similarities and differences in quality and quantity of services across PAC settings, and (4) effectiveness of postacute rehabilitation services. The full set of symposium articles, including recommendations for future research, appear in Archives of Physical Medicine and Rehabilitation.     

Addressing mental and emotional health concerns experienced by nurses during the COVID-19 pandemic

BackgroundNurses are the majority of the world's health work force and the frontline responders during pandemics. The mental/emotional toll can be profound if it is not identified and treated.PurposeIn March 2020, with New York City as the epicenter of the COVID-19 pandemic in the United States, Columbia University School of Nursing organized support circles for faculty and students providing clinical care as a healing method to address trauma.MethodsColumbia University School of Nursing adapted guidelines and conducted Circles of Care to share, listen, and acknowledge the new challenges for nurses via Zoom. Analysis of these sessions produced major themes of concern for nurses.FindingsBetween March 31 and May 31, 2020, we facilitated 77 sessions with 636 attendees. Eight major themes emerged: coping mechanisms, patients suffering and dying, feelings of helplessness, frustration with COVID-19 response, silver lining, disconnection from the world, the thread that holds nurses together, and exhaustion.DiscussionThis report offers insight into the mental/emotional outcomes of being on the frontlines. Addressing these issues is essential for the well-being of nurses and all health care providers for an effective pandemic response.     

Limitations of Current Rehabilitation Practices in Pediatric Oncology: Implications for Improving Comprehensive Clinical Care

ObjectiveTo identify the proportion of hospitals/clinics in the United States (US) that have a comprehensive pediatric oncology rehabilitation program and characterize current practices.DesignCross-sectional survey of rehabilitation providers in the US and internationally.SettingElectronic or telephone survey.ParticipantsRehabilitation or supportive care practitioners employed at a hospital, outpatient clinic, or medical university (N=231).InterventionsElectronic and telephone survey. The full electronic survey contained 39 questions, provided opportunities for open-ended responses, and covered 3 main categories specific to pediatric cancer rehabilitation: service delivery, rehabilitation program practices, and education/training. The short telephone survey included 4 questions from the full survey and was designed to answer the primary study objective.Main Outcome MeasuresProportion of hospitals/clinics with a comprehensive pediatric oncology rehabilitation program.ResultsThis cohort includes rehabilitation providers from 191 hospitals/clinics, 49 states within the US, and 5 countries outside of the US. Of hospitals/clinics represented from the full and short survey, 145 (76%) do not have an established pediatric oncology rehabilitation program. Nearly half of full survey respondents reported no knowledge of the prospective surveillance model, and 65% reported no education was provided to them regarding pediatric cancer rehabilitation. Qualitative survey responses fell into 3 major themes: variability in approach to rehabilitation service delivery, program gaps, and need for additional educational opportunities.ConclusionsThere is evidence of limited comprehensive rehabilitation programming for children with cancer as demonstrated by the lack of programs with coordinated interdisciplinary care, variability in long-term follow-up, and absence of education and training. Research is needed to support the development and implementation of comprehensive pediatric oncology rehabilitation programs.     

Top priorities for the next decade of nursing health services research

BackgroundThe U.S. health care system faces increasing pressures for reform. The importance of nurses in addressing health care delivery challenges cannot be overstated.PurposeTo present a Nursing Health Services Research (NHSR) agenda for the 2020s.MethodA meeting of an interdisciplinary group of 38 health services researchers to discuss five key challenges facing health care delivery (behavioral health, primary care, maternal/neonatal outcomes, the aging population, health care spending) and identify the most pressing and feasible research questions for NHSR in the coming decade.FindingsGuided by a list of inputs affecting health care delivery (health information technology, workforce, delivery systems, payment, social determinants of health), meeting participants identified 5 to 6 research questions for each challenge. Also, eight cross-cutting themes illuminating the opportunities and barriers facing NHSR emerged.DiscussionThe Agenda can act as a foundation for new NHSR – which is more important than ever – in the 2020s.     

The Feasibility of Exercise Interventions Delivered via Telehealth for People Affected by Cancer: A Rapid Review of the Literature

BackgroundThe prevalence of exercise as an adjunct therapy to cancer treatments including chemotherapy, radiation therapy, and surgery is growing rapidly and has been shown to improve health outcomes, treatment completion rates, and quality of life in people affected by cancer. Given the complexity of delivering cancer services during coronavirus disease (COVID-19), many people who are undergoing cancer treatment are unable to access exercise services. This review aims to investigate: (1) the feasibility of exercise telehealth interventions for individuals diagnosed with cancer; and (2) the impact of exercise telehealth interventions for people affected by cancer on physical and psychosocial outcomes.Methods/Data SourcesThe literature search was conducted in four electronic databases (CINAHL, Cochrane, Medline, and Psych Info) from January 1, 2010 until May 1, 2020. All peer-reviewed qualitative and quantitative studies were included irrespective of study design. Studies that investigated adults (aged ≥18 years) with a diagnosis of any cancer, irrespective of treatment type, cancer stage or primary/secondary nature of disease were included.ResultsTwenty-nine studies (a total of 3698 participants across the included studies) were synthesized. Across the included studies the interventions were broadly classified into four main areas of telehealth: web-based, mobile applications, SMS messaging, and telephone interventions.ConclusionParticipants across the studies showed good compliance, symptom relief and reported an overall positive experience using telehealth for exercise. There were no adverse events reported in these studies. Given the current COVID-19 pandemic, more research is required to assess the feasibility of telehealth platforms such as Zoom, Skype, Microsoft Teams, or FaceTime, and to determine the overall participant and exercise professional telehealth exercise delivery experience.Implications for Nursing PracticeTelehealth uses telecommunications technology as a tool to deliver health care to populations with limited access to cancer care. Quality care of a person living with cancer requires multidisciplinary team-based care and telecommunications technology can support interprofessional care. This review has underscored that telecommunications is a critical tool in the delivery of cancer care to enable timely ongoing support for exercise interventions for those affected by cancer. It remains important for people affected by cancer to continue to engage in and maintain regular exercise under the guidance of qualified health professionals in keeping with evidence-based clinical guidelines.     

Delays in Palliative Care Referral Among Surgical Patients: Perspectives of Surgical Residents Across the State of Michigan

ContextPalliative care services (PCS) are underutilized and frequently delayed among surgical patients. Surgical residents often serve at the forefront for patient issues, including conducting conversations regarding prognosis and goals of care.ObjectivesThis qualitative study identifies critical barriers to palliative care referral among seriously ill surgical patients from the perspective of surgical residents.MethodsWe conducted semistructured interviews with surgical residents (n = 18) across the state of Michigan, which focused on experiences with seriously ill surgical patients and PCS. Inductive thematic analysis was used to establish themes based on the research objectives and data collected.ResultsFour dominant themes of resident-perceived barriers to palliative care referral were identified: 1) challenges with prognostication, 2) communication barriers, 3) respect for the surgical hierarchy, and 4) surgeon mentality. Residents consistently expressed challenges in predicting patient outcomes, and verbalizing this to both attendings and families augmented this uncertainty in seeking PCS. Communicative challenges included managing discordant provider opinions and the stigma associated with PCS. Finally, residents perceived that an attending surgeon's decisive authority and mentality negatively influenced the delivery of PCS.ConclusionsAmong resident trainees, unpredictable patient outcomes led to uncertainty in the timing and appropriateness of palliative care referral and further complicated communicating plans of care. Residents perceived and relied on the attending surgeon as the ultimate decision maker, wherein the surgeon's sense of responsibility to the patient was identified as a significant barrier to PCS referral. Further studies are needed to test surgeon-specific interventions to improve access to and delivery of PCS.     

Timely access to inpatient rehabilitation after stroke: a qualitative study of perceived barriers and potential solutions in Ontario,Canada

Abstract

Purpose: Stroke units have been established as best practice care, in part because they offer timely initiation of rehabilitation. Experts in Ontario, Canada recommend that eligible patients be transferred to inpatient rehabilitation (on average) by day 5 after ischemic stroke and day 7 after a hemorrhagic stroke. This study explores perceived barriers to implementation of these recommendations and potential solutions.

Method: Exploratory focus groups were held with stakeholders from five geographically diverse regions across Ontario between September 2011 and January 2012. Participants were asked to consider the recommendations, list perceived barriers and to collectively discuss potential solutions. Data analysis included coding of transcribed data, sorting material to identify themes and confronting themes with a formalized body of knowledge.

Results: Barriers identified by participants fell into three categories: patient-centered, clinician-focused and resource or system based, within these, specific challenges included managing patients’ medical and emotional readiness for rehabilitation, timely completion of medical tests, staff comfort in discharging patients, dedicated transportation and funding-related concerns.

Conclusions: The structure of Ontario’s health care system presents challenges to early transfer of stroke patients to inpatient rehabilitation, yet the stakeholders consulted in this study felt that these could be addressed with proper planning, improved coordination and targeted investment.

• Implications for rehabilitation

• Stroke units are a well-established best practice in stroke care and timely access to rehabilitation is a key component of their effectiveness.

• Stroke experts in Ontario, Canada recommend transfer of suitable patients to inpatient rehabilitation on day 5 and day 7, on average, after ischemic and hemorrhagic stroke, respectively.

• Stakeholders report that meeting these targets may require some adjustments to local processes of care, many of which can be achieved with little to no financial investment.

     

Nursing workforce,education, and training challenges to implementing extracorporeal membrane oxygenation services in Australian intensive care units: A qualitative substudy

BackgroundThe use of extracorporeal membrane oxygenation (ECMO) is increasing in the management of critical care patients. ECMO service delivery requires an organisation-supported approach to ensure appropriate resources to deliver training, equipment, capacity, staffing, and the required model of care for quality care delivery. The aim of this nested substudy was to explore challenges specific to nursing staff in ECMO services in Australian intensive care units.MethodsThis was a nested substudy within a qualitative study using semistructured focus group discussions conducted with 83 health professionals, which included 40 nurses. There were 14 focus groups across 14 ECMO centres participating in the binational ECMO (EXCEL) registry of Australia and New Zealand. An inductive thematic analysis focused on the nurse's experiences of the barriers and facilitators for nursing in providing an ECMO service.ResultsFour themes emerged relating to the nurse's experience of implementing ECMO services: workforce requirements, workload demands, models of care, and level of experience. The complexity and intensity of caring for ECMO patients may need to be considered an additional factor in the burnout in critical care nurses. Current nursing ratios and responsibilities in critical care need to be considered, with the opportunity for the development of specialist advanced practitioner nursing roles.ConclusionThis study highlights the challenges for nursing in providing ECMO services in the intensive care setting. The complexity and intensity of ECMO is challenging and leads to concerns regarding burnout and workforce preparedness. New models of care need to be considered to mitigate the barriers for nursing identified across ECMO centres.     

Goal setting in palliative care: A structured review

Abstract

Background

Palliative care and rehabilitation both aim to support patients to live as actively as possible. Goal setting has been identified in health policy and clinical guidelines as a mechanism to achieve this. While goal setting is well established in traditional rehabilitation, it is unclear how it should be implemented within palliative care where people are faced with diminishing abilities.

Aim

To identify and synthesize published literature regarding goal setting in palliative care.

Method

Electronic searches were carried out on MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA, and Google Scholar databases between November 2010 and January 2011. Papers were included if they focused on patient-centred goal setting in palliative care. No restrictions were placed on study design or type of paper. Papers were classified according to the type and design and research papers were quality appraised. Papers were read and analysed using framework analysis.

Findings

Sixteen papers met the inclusion criteria. Three themes were identified: 1. Definitions, process, and functions of goal setting;

2. The challenges of delivering goal setting;

3. Theories underpinning goal setting.

Conclusions

Goal setting is recognized as an important component of patient-centred palliative care, but there is no agreement regarding ‘best practice’ and clinicians face particular challenges when trying to set goals with patients in this context. Little attention has been paid to developing a robust, theory-based approach to goal setting in this setting. Hope theory and theories of how people adapt to life-threatening illness could inform the process of goal setting in palliative care.     

Informal caregivers in home palliative care

Abstract

In order to deliver palliative care in line with the WHO definition, we must identify and support caregivers. This paper addresses some fundamental questions in defining, identifying and delivering interventions to caregivers. These considerations are key to organisation of appropriate health services, design and conduct of research, and specification and improvement of outcomes. Firstly we consider how we identify caregivers, and how we conceptualise a caregiver from the perspective of health service providers and researchers. We consider caregiver roles across cultures and settings. We then describe the challenges to selecting appropriate outcomes and what our expectations should be for intervention studies in terms of effectiveness, and the tools we use to assess and measure caregiver needs. We conclude with recommendations for future outcomes research.     

Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom

ContextPatients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate.ObjectivesTo systematically review original studies of minority ethnic groups and EoL care in the U.K. and appraise their quality.MethodsSearches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes were identified.ResultsForty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction of inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across studies.ConclusionThe results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by minority ethnic groups, and the need for authors to clarify what they mean by “culturally competent” EoL care. The synthesis of diverse and disparate studies underpins a number of key recommendations for health care professionals and policymakers. Tackling these epidemiological, demographic, institutional, social, and cultural factors will require a systematic and organization-wide approach rather than the current piecemeal and reactive interventions.     

Effects of Early Postdischarge Rehabilitation Services on Care Needs–Level Deterioration in Older Adults With Functional Impairment: A Propensity Score–Matched Study

ObjectiveTo examine the effects of early postdischarge rehabilitation on care needs–level deterioration in older Japanese patients.DesignPropensity score–matched retrospective cohort study.SettingA secondary data analysis was conducted using medical and long-term care insurance claims data from a suburban city in Japan.ParticipantsWe analyzed patients (N=2746) aged 65 years or older who were discharged from hospital to home between April 2012 and March 2014 and had care needs certification indicating functional impairment.InterventionsThe provision of early rehabilitation services by rehabilitation therapists within 1 month of discharge. Propensity score matching was used to control for differences in characteristics between patients with and without early rehabilitation services.Main Outcome MeasuresAny deterioration in care needs level during the 12-month period after discharge. Cox proportional hazards analyses were conducted to identify the association between the exposure and outcome variables after matching.ResultsAmong 2746 patients, 573 (20.9%) used early rehabilitation services. Care needs–level deterioration occurred in 508 patients (incidence: 18.3 per 1000 person-months), of which 76 used early rehabilitation services (12.3 per 1000 person-months) and 432 did not use early rehabilitation services (20.0 per 1000 person-months). One-to-one propensity score matching produced 566 matched pairs that adjusted for the differences in all covariables. In these matched pairs, the hazard of care needs–level deterioration was significantly lower among patients who used early rehabilitation services (hazard ratio=0.712, 95% CI, 0.529-0.958). A Kaplan-Meier survival analysis showed similar results (log-rank: P=.023).ConclusionsEarly rehabilitation services provided by rehabilitation therapists after hospital discharge appeared effective in preventing care needs–level deterioration, and involving rehabilitation therapists in transitional care may aid the optimization of health care for older Japanese adults with functional impairment.     

Patient perspectives on navigating the field of traumatic brain injury rehabilitation: a qualitative thematic analysis

Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury.

Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1–4 years post-injury. Qualitative thematic analysis was applied for data analysis.

Results: Three main themes emerged during analysis: A new life, Family involvement, and Rehabilitation impediments. These themes and their sub-themes described the patient perspective of TBI and rehabilitation post hospitalization. Participants reassessed their values and found a new life after TBI. Family caregivers negotiated rehabilitation services and helped the participant to overcome barriers to rehabilitation. Although participants were entitled to TBI rehabilitation, they had to fight for the services they were entitled to.

Conclusion: Individuals with TBI found ways of coping after injury and created a meaningful life. Barriers to TBI rehabilitation were overcome with help from family caregivers rather than health care professionals. Future studies need to find ways to ease the burden on family caregivers and pave the way for more accessible rehabilitation in this vulnerable group of patients.

• Implications for rehabilitation

• TBI rehabilitation might benefit from:

• ??Increased transparency in rehabilitation options

• ??More systematic follow-up programs

• ??Age-appropriate rehabilitation facilities

• ??Inclusion of patient and family in the planning of long-term rehabilitation