Using Patient-Centered Dissemination and Implementation Frameworks and Strategies in Palliative Care Settings for Improved Quality of Life and Healt

Using Patient-Centered Dissemination and Implementation Frameworks and Strategies in Palliative Care Settings for Improved Quality of Life and Health Outcomes: A Scoping Review

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HYPERLINK "https://journals-sagepub-com.ezproxy.uws.edu.au/doi/full/10.1177/10499091231214241" l "con1"LeaSacca,PhD, MPHhttps://orcid.org/0000-0002-0629-2863lsacca@health.fau.edu,DianaLobaina,BShttps://orcid.org/0000-0003-0623-7650,[], andHYPERLINK "https://journals-sagepub-com.ezproxy.uws.edu.au/doi/full/10.1177/10499091231214241" l "con8"SuleykiMedina,MD+5View all authors and affiliationsOnlineFirsthttps://doi-org.ezproxy.uws.edu.au/10.1177/10499091231214241Contents

AbstractIntroductionMethodsResultsDiscussionConclusionDeclaration of Conflicting InterestsFundingORCID iDsReferencesSupplementary MaterialPDF / ePubMoreAbstract

Background

There is a need for patient-provider dissemination and implementation frameworks, strategies, and protocols in palliative care settings for a holistic approach when it comes to addressing pain and other distressing symptoms affecting the quality of life, function, and independence of patients with chronic illnesses. The purpose of this scoping review is to explore patient-centered D&I frameworks and strategies that have been adopted in PC settings to improve behavioral and environmental determinants influencing health outcomes through evidence-based programs and protocols.

Methods

The five step Arksey and OMalleys (2005) York methodology was adopted as a guiding framework: (1) identifying research questions; (2) searching for relevant studies; (3) selecting studies relevant to the research questions; (4) charting the data; and (5) collating, summarizing, and reporting results.

Results

Only 6 out of the 38 (16%) included studies applied a D&I theory and/or framework. The RE-AIM framework was the most prominently cited (n = 3), followed by the Diffusion of Innovation Model (n = 2), the CONNECT framework (n = 1), and the Transtheoretical Stages of Change Model (n = 1). The most frequently reported ERIC strategy was strategy #6 Develop and organize quality monitoring systems, as it identified in all 38 of the included studies.

Conclusion

This scoping review identifies D&I efforts to translate research into practice in U.S. palliative care settings. Results may contribute to enhancing future D&I initiatives for dissemination/adaptation, implementation, and sustainability efforts aiming to improve patient health outcomes and personal satisfaction with care received.

Introduction

Over the past decade, the palliative care (PC) field in the United States (U.S.) has expanded rapidly in response to patient and practitioner demand and increased recognition of its value in providing holistic and equitable care for the most vulnerable patients in the countrys healthcare system.1-3As of 2019, 72% of U.S. hospitals with fifty or more beds report a palliative care team, a significant increase from 67% in 2015, 53% in 2008, and 7% in 2001.4When compared to conventional care, specialist teams in PC were reported to improve satisfaction and identify and deal with more advanced cancer patients and their family needs.5-7Additionally, multidisciplinary approaches to PC contributed to a reduction in the overall cost of services received by decreasing the duration of time spent in acute hospital settings.5-7Although PC historically focused on caring for cancer patients and those near the end of life, current evidence highlights higher benefits to patients with diverse types of chronic illnesses and to patients at earlier stages of their diseases.5-7Patients, families, and healthcare providers might have different views on prioritizing diverse palliative care dimensions; however, cooperation of all three stakeholders is essential for patient satisfaction,14while avoiding any delayed communication or missed opportunities.8-19Hence, there is a need for patient-provider dissemination and implementation frameworks, strategies, and protocols in palliative care settings for a holistic approach when it comes to addressing pain and other distressing symptoms affecting the quality of life, function, and independence of patients with chronic illnesses.18-20The challenge lies in adapting the current models of PC to achieve the strongest dissemination to all chronic care settings.21As for implementation of PC, there is a need for adequate recognition of emerging best practices.20Dissemination and Implementation Frameworks and Strategies for PC

Recently, the field of dissemination and implementation (D&I) science research is growing, with research-to-practice models and frameworks being widely applied and adapted for use by diverse stakeholders such as researchers, community health workers, and funders.22-24These models, consisting of frameworks and strategies, provide systematic guidance and critical assessment of prevention efforts.22-24They also help with the identification of important barriers and facilitators to D&I, assess community needs, and determine the impact of including expert knowledge in implementation planning.23D&I science has been widely used to address the challenges in intervention dissemination and implementation for chronic disease prevention and to alleviate the burden of continuous health disparities that persist in vulnerable communities in spite of the availability of much evidence-based policies and programs (EBPPs).25-29Although the utility of D&I models is widely established, their application to guide protocol implementation continues to be limited in scope, particularly in clinical settings.30-33Implementation Strategies

Implementation strategies were created for the successful D&I of research highlights into clinical and community settings.34One of the taxonomies of strategies that is used to facilitate the adoption, implementation, and maintenance of evidence-based interventions (EBIs) is the ERIC (Expert Recommendations for Implementing Change) taxonomy.35,36The ERIC taxonomy encompasses 73 strategies tailored to EBI implementation in healthcare settings.34,35This compilation has been widely used in health and public health and has provided essential common terminology for implementation strategies. The ERIC taxonomy exhibits high face validity due to its development, refinement, and dissemination by global implementation experts. These strategies are stratified into nine domains created by D&I experts to conceptually differentiate distinct categories of implementation strategies: (1) use evaluative and iterative strategies; (2) provide interactive assistance; (3) adapt and tailor to context; (4) develop stakeholder interrelationships; (5) train and educate stakeholders; (6) support educators; (7) engage consumers; (8) use financial strategies; and (9) change infrastructure.35Despite the availability of strategies involving patients and family members as active participants in EBIs in PC settings, adaptation and implementation of such strategies remain limited in scope.37,38Considering D&I frameworks and strategies in the context of PC highlights its growth and its importance to examine the most effective ways of translating existing evidence into practice.39-41There is a need for studies that create guidelines and roadmaps built on theoretical foundations of D&I research to scale up successful D&I of strategies, frameworks, and protocols proven to cater to the needs of all PC patients, their caregivers, and their healthcare providers.42This scoping review explores patient-centered D&I frameworks and strategies that have been adopted in PC settings to improve patient experience with specialized care received and influence their health outcomes through evidence-based programs and/or protocols. It will also identify common barriers and challenges to the successful D&I of evidence-based PC programs and/or protocols, as well as determining the type of chronic illnesses addressed in PC settings. This scoping review will inform and guide future D&I initiatives for dissemination/adaptation, implementation, and sustainability efforts to improve patient health outcomes and personal satisfaction with care received.

Methods

The review team encompassed a multidisciplinary group of medical and public health professionals with extensive knowledge in the D&I of evidence-based interventions. The PRISMA-ScR checklist (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) was used as a reference guideline in writing the study sections43. To enhance the transparency of the methodology, enable replication of the research strategy, and ensure the reliability of study findings, the five step Arksey and OMalleys (2005) York framework methodology was utilized to guide the scoping review: (1) identify research questions; (2) search for relevant studies; (3) select studies relevant to the research questions; (4) chart the data; and (5) collate, summarize, and report results.44This framework has been globally used to conduct scoping reviews and was the original framework developed to highlight the rationale and provide methodological recommendations for conducting such review types.44Step 1. Identify Research Questions

Two research questions were formulated to guide the scoping review: (1) What are the main barriers encountered in the dissemination and/or implementation of evidence-based programs/protocols aiming to improve health outcomes of patients in palliative care settings? (2) Which evidence-based frameworks and implementation strategies have been used to promote the dissemination and implementation of health promotion programs/protocols in palliative care settings?

Step 2. Search for Relevant Studies

Keywords and mesh terms were developed by a senior research librarian based on established scoping review protocols. Search terms focused on palliative care settings, adult population groups, quality of life, health outcomes, chronic illnesses, dissemination models, dissemination frameworks, implementation frameworks, evidence-based interventions, and US states. To narrow, widen, and compile a comprehensive search of the literature, educational subject headings and boolean operators were utilized. The Rayyan platform, an online interactive platform for researchers to develop systematic and scoping reviews, was used to condense all articles generated from our search.45Four psychosocial and behavioral science oriented electronic databases (Pubmed, Embase, Medline, and CINAHL) were searched to identify peer-reviewed literature from primary data sources, secondary data sources, and case reports. The review of the databases was carried out over a period of two months, ending in February 2023. Articles were screened for eligibility over a period two months, ending in April 2023.

Inclusion Criteria

Included were peer-reviewed studies, published in English between 2000 and 2023 that (1) described the use of D&I strategies and/or frameworks to increase the dissemination, implementation, or maintenance of patient-centered health promotion programs/protocols in PC settings, (2) were carried out in the United States, (3) and were conducted among PC patients with chronic illnesses. The 2016 National Institute of Health definitions for Dissemination and Implementation were adopted for the purpose of this study.25Evidence-based programs and/or protocols were defined as evidence-informed programs/protocols disseminated or implemented in PC patients to improve symptom management, quality of life, family support, and patient-provider communication. Articles were not excluded on the basis of the evidence they presented. Palliative care was defined as a type of specialized medical care received by patients with chronic illnesses to alleviate their symptom and receive treatment intended to cure their serious illness as needed.

Exclusion Criteria

Excluded were studies that addressed patients outside the context of PC, or targeted PC patients in countries or regions outside the U.S. states. Articles were also excluded if they focused on improving the behavioral and health outcomes of PC patients with no mention of the D&I field (theories, models, or strategies), studies focusing on general recruitment strategies, narrative reviews, scoping reviews, or systematic reviews on PC settings, abstracts of studies presented in conferences, or studies reporting solely ethical issues that might arise in PC delivery. An initial screening of the articles after extraction from relevant databases as well as the construction of the Rayyan page specific to the study was carried out by lead author (LS). Reviewers (DL, SB, VJ, and MR) conducted secondary screening of the titles and abstracts. Disagreements were resolved by reaching consensus through discussions that involved the lead author (LS) (Figure 1).

INCLUDEPICTURE "https://journals-sagepub-com.ezproxy.uws.edu.au/cms/10.1177/10499091231214241/asset/images/large/10.1177_10499091231214241-fig1.jpeg" * MERGEFORMATINET Figure 1. Flow chart of study selection process.OPEN IN VIEWERStep 3. Selection of Studies Relevant to the Research Questions

Extraction, summarization, and tabulation of data from included studies were carried out by a group of four co-authors (DL, SB, VJ, and MR). The lead author (LS) reviewed the tabulation process for validity and reliability purposes. Summary tables included an evidence table describing study characteristics including D&I models and health promotion theories used, identified barriers, and mitigating strategies. The Dissemination and Implementation Models in Health Research and Practice Webtool25was used as a reference guide to identify D&I models. Identified barriers were first tabulated by the Socio-Ecological Model (SEM) to examine contextual factors hindering implementation in palliative care settings at each level of the SEM (Table 2). They were then further classified by specific categories based on major themes within the broader SEM framework (Table 3). The SEM framework informs the selection of patient-centered D&I frameworks and strategies to deal with challenges encountered when improving the quality of life of palliative care patients and allows for the evaluation of such models and strategies when applied to behavioral and environmental determinants of health behaviors.46The ERIC framework (previously described) was used for the categorization and coding of extracted D&I strategies. This reference taxonomy was used due to its wide adaptation in clinical settings.35The initial categorization and coding carried out by co-authors (DL, SB, VJ, and MR) was compared to independent categorization with the lead author (LS) for inter-rater reliability in a subsample of 29% (n = 11) of the studies. Resulting inter-rater reliability was 88% for strategy-level matching and 80% for domain-level matching after completing one round of discussion with discrepancies resolved by consensus (Supplementary Files 2&3).

Steps 4&5. Data Charting and Collation, Summarization, and Reporting of Results

Study characteristics were tabulated for primary author, study design, intervention topic area (if intervention or experimental study or evaluating outcomes from such type of study), sample size, priority population, palliative care setting, stakeholders, D&I theory/framework, other models/framework, and addressed chronic illnesses (Table 1). Barriers were classified by SEM level (Table 2) and categorized to one of sixteen barrier categories (Table 3). The specific strategies were rank ordered within the ERIC domains (Table 4).

Table 1. Study Characteristics.

Primary Author/Year Study Design Interventional/ Experimental Study Data (Yes/No) Intervention/Program Topic Area Sample Size Priority Population Palliative Care Setting Stakeholders D&I Theory/Framework Other Models/Frameworks Chronic Illness Addressed

Aldridge et al (2015) Descriptive Study No N/A N/A Individuals with serious illness Hospital palliative care, community palliative care, and hospice Quality improvement organizations; accreditation and certification organizations; healthcare purchasers and businesses; healthcare payers; health professional organizations; consumer organizations; research and workforce organizations None WHOs Public Health Strategy for Palliative Care Chronic diseases (Cancer, heart failure, obstructive pulmonary disease, etc.)

Armstrong et al (2021) Prospective cohort study Yes Examination of factors predicting end-of-life experiences and opportunities for improvement among individuals with at least moderately advanced DLB and their caregivers N = 150 total dyads (patient and caregiver) Patients with a clinical diagnosis of at least moderate-to-severe dementia Neurological palliative care Patient and caregiver dyad; primary care physicians; geriatricians; general/specialty neurologists; therapists; social work/care coordinators; palliative care team; nursing home staff; hospice; research coordinators; advocacy organizations None None Dementia with Lewy bodies (DLB)

Bakitas et al (2021) Descriptive Study No N/A N/A Cancer patients Telehealth palliative care Oncology practices; oncologists; cancer centers; local primary care physicians; palliative care nurse; lay navigator telehealth coach; home hospice team; palliative care clinician None Educate, Nurture, Advise, Before Life Ends (ENABLE) Advanced cancer

Hub (expert) and Spokes (Community facilities in need) model Becker et al (2017) Cluster randomized trial Yes Assessment of the impact of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention on patient, caregiver, and healthcare utilization outcomes N = 672 patients at 16 clinics Solid tumor oncology patients Primary palliative care Family caregivers; primary palliative care team; oncology nurse; families; Nurse Advisory board; nurse Project Manager; clinic providers and staff; oncology clinics CONNECT None Advanced metastatic solid tumor cancer

Benesch et al (2022) Mixed Methods Study Yes Evaluation of an educational intervention with digital tools for palliative care discussions in an urban EM residency program N = 45 emergency medicine residents Emergency department patients Emergency department palliative care ED residents, interns, and physicians; palliative care consult team; residency program leadership; faculty mentors from the emergency department and palliative care service; hospital quality improvement team and EMR analysts RE-AIM Education in Palliative and End-of-Life Care for Emergency Medicine (EPEC-EM) curriculum model Chronic Diseases Admitted to the Emergency Department

Brian Cassel et al (2018) Case Study No N/A N/A U.S. hospital palliative care teams at various contemplative stages of developing palliative care programs Hospital palliative care Philanthropists; Center to Advance Palliative Care (CAPC) staff; National Palliative Care Research Center; California Health Care Foundation; Icahn School of Medicine at Mount Sinai; institutions without palliative care programs; member health care organizations (hospitals and health systems) and their clinical, administrative, and financial staff Diffusion of Innovations model/Transtheoretical Stages of Change model Principles of Social Entrepreneurship model None

Distributed training model Czynski et al (2021) Pilot study Yes Preliminary evaluation of the training session program for nurses on implementation of Mother Baby Care Pathway framework N = 30 mother baby unit (MBU) nurses Neonates born with lethal or life-limiting diagnoses Neonatal palliative care Mother Baby Unit (postpartum unit); labor and delivery team; NICU team; triage; antenatal care unit; operating room team; postpartum mother; womens emergency department staff; neonatologists; nursing director; nursing educators; additional siblings (in the case of multiple gestation); postpartum unit nurses; patients father; family members of patient; ancillary groups that interact with families (environmental services, nutrition, CNAs, translation services); chaplaincy and social work None Mother Baby Comfort Care Pathway Lethal or life-limiting diagnoses in neonates

DiMartino et al (2019) Cross-sectional Study Yes Evaluating the impact of two TPCC approaches on consult implementation in two distinct inpatient services, solid tumor medical oncology and gynecologic oncology, at a comprehensive cancer centerN = 8652 admissions Inpatient oncologic patients Solid tumor and gynecologic oncology palliative care services Palliative care clinicians and residents; oncologists; research coordinators; medical centers/clinics/hospitals None None Gynecologic and solid tumor cancer

Ferris et al (2007) Descriptive Study No N/A N/A Palliative Care providers Palliative care services within an organization Community, clinical, and administrative leaders within palliative care None CHPCA (Canadian Hospice Palliative Care Associations) Model Severe chronic illnesses

Plan-Do-Study-Act cycle model Feudtner et al (2007) Descriptive Study No N/A N/A Children with life-threatening conditions Pediatric Palliative Care Clinicians, Parents, Patients, family members, nurses, social works, therapist, pastoral care workers None Typical Medical Care Model (Curative Care) Child life-threatening conditions

Cure-seeking care Life-extending Care QOL and Comfort Maximizing Care Family Supportive and Grief & other emotions Care Finlay et al (2018) Descriptive Study No N/A N/A Cancer patients Outpatient palliative care Oncology team (physician, nurses, receptionist, PA) None Independent model of Palliative Care Cancer

Embedded model of palliative care Telehealth model Patient care model Primary Palliative Care model Frendak et al (2020) Quasi-experimental Study Yes Demonstrating the impact of a new palliative care/triage on efficiency, teamwork, and patient care Sample size measured by number of consults (n = 161 pre-intervention and n = 232 post-intervention) Palliative Care Patients In-patient Palliative Care Unit Palliative Care team (Physician, Pharmacist, Chaplain, Social Workers) None Triage Model Serious chronic illnesses

Harrison et al (2022) Qualitative Study No N/A N = 40 (9 people living with dementia, 16 current care parterns, and 15 former care partners) People living with dementia and their care partners Dementia Specialty centersDementia specialty centers, Care partners for patients with dementia, dementia palliative care services, care providers (geriatrics and behavior neurology) None Biopsychosocial framework Dementia

Huang et al (2011) Cross-sectional study No N/A N = 255 parents of children receiving pediatric palliative care Parents/caregivers whose children had life-threatening conditions (LTC) Integrated pediatric palliative care programs Service programs, Integrated pediatric palliative care providers None The Patient-Reported Outcomes Measurement Information System (PROMIS) Child life-threatening conditions

Clinical Risk Groups (CRGs) system Hutt et al (2018) Mixed Methods Study No N/A N = 136 (n = 51 frontline staff, n=37 middle manager, n=19 key informants, n=29 veterans with unstable housing) Homeless veterans Veterans Affairs medical centersCommunity leadership, VA leadership, homeless veterans, patient care providers, program managers, national stakeholders, policy makers None Modified delphi process Chronic illnesses in veterans

Isaacson et al (2015) Qualitative study No N/A N = 7 Native and non-Native American health care professionals Native American/American Indians in South Dakota Palliative Care on South Dakota reservations Native and non-native heath care professionals, Indian Health Services and health care organizations, education professional and public health, nursing and medical students None eConsultingSerious chronic illness

Iyer et al. (2019) Descriptive study No N/A N = 20 patient-caregiver dyad Racially diverse patients with moderate to very severe COPD and their family caregivers Early Palliative Care COPD patients, caregivers, patients family, pulmonologist, respiratory nurses and technicians. None Medical Research Council Framework COPD

Kamal et al (2018) Descriptive Study No N/A N/A Patients in palliative care Palliative care services within an organization Patient, healthcare team, family members, research collaborators, improvement network system, community resource staff, IT design experts None Learning Health Systems Coproduction Model Serious Illnesses

Kataoka-Yahiro et al (2017) Quasi-experimental Study Yes Evaluating a palliative and hospice care training of staff in two nursing homes in Hawaii N = 52 staff members from 2 long-term care facilities in Oahu Island and n = 9 family caregivers Ethnically Diverse Staff Long-Term Care Settings Patients, families, hospice care teams, nursing home staff, long-term care facility administrators None Leiningers Cultural Care Theory Serious Illnesses

Hall Conceptualization of High-Context and Low-Context Cummins Model of Language Acquisition Kaye et al (2015) Descriptive Study No N/A N/A Children with pediatric cancers Private residences, community-based clinics or settings, long-term care facilities, or respite or hospice facilities Pediatric oncologists, patients, families, social workers CBPPC providers, home health team, home nursing agencies, community-based providers, hospice organizations None Community Based Pediatric Palliative Care Pediatric cancers

Kobler et al (2011) Descriptive study No N/A N/A Unborn babies with fatal diagnosis Institutions that already have a perinatal bereavement program Physicians, midwives, advanced practice nurses, labor and delivery/neonatal intensive care nurses, social workers, chaplains, and child-life therapists, pediatric subspecialists, community health clinicians, hospital administrators None Integrative Model of Healing and Curing Perinatal fatal diagnosis

Palliation and Bereavement Care Lafond et al (2019) Quasi-experimental study Yes Describing the application of a nursing theory framework for an evidence-based practice/quality improvement project that embedded pediatric primary palliative care into a hospital-based setting using unit-specific projects N = 149 children Children with serious illness and their families Hospitals with pediatric primary care units Direct care providers, patients, families, palliative care parent advisory council None Kolcabas Comfort Theory Pediatric chronic conditions

Lam et al (2019) Case Study No N/A N/A Nephrology patients Kidney palliative care Nephrologists; interdisciplinary team with primary palliative care skills; care coordinators; fellows; medical centers/clinics/hospitals; family members None Embedded Kidney Palliative Care Model Advanced Renal Disease

Mobile/Home-Based Kidney Palliative Care Maxwell et al (2022) Qualitative Study No N/A N = 13 participants (9 patients and 4 independent caregivers) Patients with chronic illnesses Community-based clinics Clinical Advisory Committee, patients, families, nurses, social workers, clinicians None Patient and Family Engagement framework Chronic illnesses

McAndrew et al (2021) Case Study No N/A Case of n = 1 patient with end-stage liver disease Patients in ICU Intensive care units Palliative care specialists, patients, families, spiritual support professionals, social workers, child life specialists, ICU nurses, ICU physicians None Integrated palliative care model End-stage diseases

Collaborative palliative care framework Pfeifer et al (2006) Descriptive Study No N/A N = 56 patients Patients with advanced cancer on Medicaid Community-based palliative care Community oncologists, cancer treatment centers, hospital social workers and case managers None Passport Health Plan Advanced cancer

Piamjariyakul et al (2021) Pilot Study Yes Describing intervention fidelity strategies/ procedures developed for a pilot study testing a new palliative care nursing intervention (FamPALcare) for families managing advanced lung disease N = 20 patients and their families Families managing advanced interstitial lung disease Home care setting Patients, family members, nurse interventionists, researchers None End-of-Life Palliative Care coaching conceptual framework Advanced Interstitial Lung Disease

Requena et al (2022) Qualitative Study No N/A N = 23 children and their families Children with advanced cancer Pediatric cancer centerPatient, families, primary clinicians and PPC clinicians, oncology team None Symptom management process model Advanced pediatric cancers

Grounded Theory Rushton (2005) Case Study No N/A N/A Pediatric Patients Pediatrics Palliative Care Pediatric nurses; physicians; healthcare professionals; palliative care team; PICU staff; resident physicians; other practitioners and healers; child life specialists; chaplains; social workers; family members; community support groups; medical centers and hospitals; legislators/policy makers None Integrated Model of Palliative Pediatric Care Acute Myelogenous Leukemia (AML)

Salek et al (2022) Qualitative Study No N/A N = 174 Clinicians Pediatric Cancer Patients Pediatric Palliative Care Multidisciplinary pediatric physicians; advanced practice providers (APPs), nurses; psychosocial clinicians [social work, child life, psychology, spiritual care, music therapy, physical therapy, occupational therapy]; palliative care clinicians; family members None Embedded Palliative Care Model Cancer within the following divisions Hematologic malignancy, Bone Marrow Transplant (BMT), Solid tumor, NeurooncologySiler et al (2019) Qualitative Study No N/A N = 19 Clinicians Advanced Cancer Patients in Outpatient Settings Cancer Palliative Care Oncologists; non-PC nurses; palliative care team; multidisciplinary physicians; social workers; chaplains; nurse administrators; nurse coordinators; family caregivers; outpatient medical centers / community-based healthcare settings; Hospice and palliative care nurses; RE-AIM Model (particularly the third dimension, Adoption) N/A Non-Small Cell Lung Cancer (NSCLC)

Smith (2000) Descriptive Study No N/A N/A Cancer Patients Cancer Palliative Care Oncologists; nurses; hospice and palliative care team; family members; interdisciplinary care team; hospitals/hospice centers/home nursing facilities/outpatient care centers; None Regional Palliative Care Network Cancer

Rural Cancer Outreach Systems Coordinated Palliative Care Models Tyler et al (2015) Qualitative Study No N/A N = 16 nursing home administrators in different palliative acre facilities Nursing home (NH) Residents Nursing Home (NH) Palliative Care Nursing home facilities, administrators, staff, and clinicians; Hospices; Interdisciplinary teams; state coalitions; trade organizations; corporate offices; trade magazines; conference and seminar administrators; Centers for Medicare and Medicaid Services (CMS); PC advocates / advocacy groups; policy makers at state and federal levels; NH resident families Diffusion of Innovation Resident-Centered Approaches aka Culture Change (CC) Chronic illnesses

Walling et al (2017) Quasi-experimental study Yes Improving supportive care quality measures through an embedded palliative care nurse practitioner (NP) in an oncology clinic N = 37 Oncology Clinics (35 in control group and 2 in intervention group) Advanced Cancer Patients Advanced Cancer Palliative Care Oncologists; palliative care physicians; hospital leadership personnel; palliative care nurse practitioners; psychologists; social workers, chaplains None Embedded Palliative Care NP Model Advanced Cancer (included large proportion of Breast Cancer)

Jacksons Prognostic Awareness Model Weng et al (2022) Prospective cohort study No N/A 17 rural Community Teams (only 8 completed follow-up) Patients in Rural Communities Rural Setting Palliative Care Clinicians in rural settings; caregivers in rural areas; interdisciplinary community care team; State Offices of Rural Health; rural health centersNone Community-Centric Framework / Community-Based Model of Palliative Care Severe chronic illnesses

Wiener et al (2015) Descriptive Study No N/A N/A Adolescents and Young Adults (AYAs) with Cancer Cancer Palliative Care Oncologists; Palliative care team; interdisciplinary care team; AYA PC trainees; resident physicians; medical students; physician-assistants; nurse practitioners; family caregivers; bereaved family members None Schwartz Center Rounds Program Cancer (including malignant epithelial neoplasms, malignancies involving reproductive organs, ALL, AML)

Yabroff and Mandelblatt (2004) Descriptive Study No N/A N/A Cancer Patients (but broadly applicable to other patient populations with life-threatening diseases) Cancer End-of-Life Care Oncologists; Palliative care team; hospice team; healthcare providers; interdisciplinary care team; medical education coordinators; residents; medical students; family members; informal caregivers; mass media; healthcare surrogates; governing bodies; policy makers; nurses; social workers; insurers None Conceptual Model of Realized Access to End-of-Life Care Cancer

Andersens and Adays behavioral model Zubkoff et al (2018) Pilot Study Yes Developing and testing ENABLE (Educate, Nurture, Advise, Before Life Ends) toolkit in rural community cancer centers4 Rural-Serving Community Cancer CentersRural Advanced Cancer Patients Oncology Palliative Care in Rural Settings Clinicians; program administrators; families; community cancer centers; implementation scientists RE-AIM Framework Early Concurrent Palliative Care Model [ENABLE (Educate, Nurture, Advise, Before Life Ends)] Advanced Cancer

OPEN IN VIEWERTable 2. Barriers Classified Based on the Socio-ecological Model (SEM).

Articles Barriers Socio-Ecological Model

Individual Interpersonal Organizational Community Society/Policy

Aldridge et al 2015 Lack of adequate education/training for medical residents x x

Perception of palliative care as end-of-life care by healthcare providers and the public x x

Inflated expectations regarding critical care therapies x x

Perception that palliative care precludes more aggressive treatment x x

Physician concern that a palliative care referral will alarm patients and families x x

Physicians lack of familiarity with availability and suitability of hospice x

Inadequate size of the palliative medicine-trained workforce x x

Lack of funding x x

Medicare funding does not support palliative medicine specialty training x x

Current palliative medicine fellowship training programs are inadequately supported by scarce philanthropic funding x x

Challenge of identifying patients appropriate for palliative care referral x x

Lack of clear guidelines regarding the identification of patients appropriate for palliative care consult (ED setting) x x

Lack of 24h availability of a palliative care team (ED setting) x

Need for culture change regarding palliative care across settings x

Fragmented healthcare system in the United States x

Healthcare system neither recognizes nor pays for the day-to-day long-term services needed for people with serious illness x

Need for greater funding for research x x

No study section that specifically focuses on palliative care, and existing study sections tend to have a maximum of only one to two reviewers with expertise in palliative care research x

Peers with appropriate content and methodological expertise in palliative care rarely review palliative care grant submissions, reducing their likelihood of being funded x x

Lack of adequate reimbursement for palliative care for complex patients x x

Absence of incentives that reward hospitals for offering palliative care consultation or early hospice referral for patients with complex, multiple comorbidity, and end-stage disease x x

Regulatory barriers to greater palliative care integration, particularly in the nursing home setting x x

Misperception that palliative care is incompatible with the restorative focus of nursing home reimbursement and regulation x x

Prospective reimbursement categories that must be used by nursing homes and Resource Utilization Groups do not include palliative care x x

Armstrong et al (2021) Lack of physician knowledge about quality end-of-life care in dementia x x

Difficulty assessing symptoms of dementia x

Lack of physician recognition of terminal dementia stages and dementia as a cause of death x

Bakitas et al (2021) Poverty, underinsurance, low technology and broadband availability, and health literacy leave patients in low-income areas excluded from telehealth access x x x

Digitally illiterate patients unable to participate in telehealth x x

Becker et al (2017) Lack of support for nursing provision of primary palliative care x x

Benesch et al (2022) Time constraints x x

Lack of prior knowledge of patients' disease process and prognosis, which can be challenging to obtain in an ED visit x x x

Lack of access to specialized palliative care services x x x

Structural barriers such as crowded and loud environment, no access to a private room x

Communication difficulties due to language barriers, health status, or disability x x x

Navigating complex family structures x x

Difficult to engage nurses and PAs in intervention, as they do not have protected educational time to attend sessions and are not offered continuing education credits for attendance x x x

Brian Cassel et al (2021) No dedicated funding source akin to the Medicare hospice benefit x x

Cost of interdisciplinary teams typically exceeds fee-for-service revenue generated by billing providers, so programs struggle to secure the staff resources required x x

Current US health care system gives strong preference to profit centers that generate new revenue x x

Hospitals tax status and bed size are strong correlates of palliative care adoption x

Czynski et al (2021) Significant coordination necessary for multiple departments to collaboratively provide care via flexible pathways

Challenging when care team confronted with unexpected diagnosis x x x

Birth at an unscheduled time may lead to challenges in the implementation of one-to-one nursing care that is the backbone of this care model x x x

Low number of families participating in the program x x x

Operating room delays x

Dimartino et al (2019) Workforce limitations in their ability to respond to all patients in need x

Need to balance desire to provide services with availability of trained work force that can deliver quality palliative care x x

Ferris et al (2007) Take months to years to develop guidelines X

Data collection might be burdensome X

Feudtner et al (2007) Communication challenges X

Misconceptions due to strong religious beliefs X X

Finlay et al (2018) Funding limitations and challenges across models X

Patients with advanced cancer may face challenges in access of care in clinic settings because of physical, functional, or resource-based limitations X

Additional research is needed to establish innovative models of care X

Frendak et al (2020) Triage went through changes over a few months, and there was no consecutive collection periods X

Staffing changes or unidentifiable factors could influence outcome due to study design X

Using notes to quantify visits which might lead to underreporting of visits X

Demand for PC services exceeds current resources X

Harrison et al (2022) Lacked racial and socioeconomic diversity and did not represent all issues patients living with dementia (PLWD) and care providers face X X

Small sample size X

Recruitment challenges due to inability of PLWD patients to complete consent process) X X

COVID interrupted member checking to validating findings X X

Conducted in US and might not translate to international audience X

Huang et al (2011) The comparison of the hierarchy of item difficulties between children with life-threatening conditions (LTC) and healthy children were not based on same calibrated metrics X

Time lag between health status may differ due to periods of data collection X

Risk of Response bias since reported differences between responders and non-responders X

Limited generalizability of findings to entire population of children with LTC X X

Parent proxy-report instead of child self-report X X

Use of CRGs to classify children into health status which can lead to inherent bias X

Cross-sectional data does not consider disease progression X

Gaps in coverage and provider miscoding that may have occurred X X

Hutt et al (2018) Small sample size X

Lack of Access to Housing Appropriate to People With Declining Functional Capacity X

Managing Symptoms in the Unstable Housing Context X

Care Discontinuity Between Health Systems and Within VA X X

VA Regulations Pose Barriers to Care X X

Competition for Resources That Could Help Homeless Veterans at EOL X X

Isaacson et al (2015) Limited information in literature on palliative or EOL in tribal communities X

Social-ecological determinants related to issues of access X

Excluded viewpoint of NA/AI afflicted with chronic illness X

Small sample size X

Research team was compromised of only Caucasian X

Insufficient funding, lack of infrastructure, and misconceptions X

Iyer et al (2019) Limited guidance on palliative care for COPD patients X

COPD family caregiver research is limited X

No studies have explored perspectives on early palliative care needs in COPD across Global Initiative for Chronic Obstructive Lung Disease X

Expanding early palliative care beyond cancer to nonmalignant chronic diseases has not been well accepted due to limited awareness and misconceptions of palliative care X

Conflicting opinions on whether early palliative care should be provided by specialist clinician or by pulmonologist, respiratory nurses or therapists X

Small sample size limitation and single center design X

Excluded patients without family caregiver, who have unique social support needs X

Kamal et al (2018) Change management transformative cultural change involving unlearning and reimagining roles and identity can be difficult X X

Performance vital to have a balanced set of measures, but can be difficult with different stakeholders with differing interests X

Policies vital for healthcare policies to support engagement of patients and families with palliative care and reward better health status and quality of life X

Payment and resource allocation supportive financing critical to the sustainability X X

Katoaoka-Yahiro et al (2017) Necessary to have continuous mentorship and resource support from administration X X

Lack of training for ethnically diverse staff X

Conflicting staff schedules X X

High staff turnover X

Kaye et al (2015) Stigmatization of the phrase palliative care X

Discrepancies among perceptions held by pediatric oncologists, other members of the team, and parents X

Lack of formal PPC education for pediatric oncologists X

Reliance on buy-in and collaboration between hospital-based and community-based providers X X

Presumptions of family as giving up X

Preconceived notions about logistical and emotional aspects of receiving home-based or hospice-based care X

Insufficient numbers of clinicians have the training to provide home-based care to medically complex children X

Lack of funding on both national and state levels X

Identifying high quality local programs that are comfortable with providing care to children with life-threatening conditions X

Availability of only few hospice programs with low pediatric census to acquire or maintain comfort and expertise in this population X

Financial barriers as they pertain to insurance reimbursement X X

ACA dichotomy of choosing either disease-directed therapy or hospice care X

Exclusive limitation of application to children who are eligible for Medicaid or the State Childrens Health Insurance Program X

Kobler et al (2011) Low access to hospice service X X

Time constraints in delivering pediatric palliative care X

Difficulty with shifting assignments or workload to accommodate the babys needs X

Language and cultural barriers X

Lafond et al (2019) Physicians and advanced practice registered nurses requesting separate educational experiences to feel more free to discuss moral distress X

Different learning styles between physicians and nurses X

Difficulty in getting the time off to attend all training sessions X

Individual mentoring on the clinical units difficult to schedule as participants did not consistently provide their schedules X

Lam et al (2019) Need to better align financial incentives with high-quality patient-centered care X

Limited active participation from governmental organizations to accelerate innovation compared to other countries X

Maxwell et al (2022) Shortage of palliative care specialists X

Educating ICU professionals may not be enough to change the culture of ICU practice X

McAndrew et al (2021) Unrealistic patient and family expectations and disagreements between patients and families and the ICU team about goals of care X

Variable provider attitudes about the role of palliative care X

Differing opinions about what specific triggers should be used for automatic palliative specialist consults X

Nurse and physician disagreement about whether bedside nurses can request a palliative specialist consult X

Inadequate support for junior physicians during end-of-life decisions X

Disagreement among healthcare professionals about who can benefit from palliative care X

Identification of the best strategies for integrating palliative care in the ICU X

Limited metrics to evaluate palliative care integration and collaboration in the delivery of ICU care X

Pfeifer et al (2006) Patient volume and time constraints leading oncologists and staff to focus on medical care of patient limiting facilitation of supportive, community-based care X

Oncologists and staff unaware of patients insurance status X

Program interpreted as being only for patients approaching death X X

Palliative care is not well understood X X

Program was viewed as having traditional managed care agenda, whereby treatments might be questioned or denied X

Staff members were unsure of HIPAA regulations related to making such referrals X

New programs are often forgotten, especially if outcomes are not yet known X

Piamjariyakul et al (2021) Low number of participants X

Requena et al (2022) Patients voices, especially from younger children, fathers, and minority families were less represented X

Under-reporting of symptoms X

Tolerance/Minimalization X

Lack of Help Seeking X

No standardized assessment tools X

Limited documentation of pharmaceutical treatments X

Lack of Integrative Strategies X

Lack of Active Symptom Follow-up X

Rushton et al (2005) Time constraints, lack of trust, and limited opportunities to build relationships with patients, families, and team members X X X

Decisional conflict arising when choices involve potential risk, loss, or regret X X

Lack of information about alternatives and consequences, limited personal experience on which to base the decision, and perceived pressure from others who are invested in the decision to pursue palliative care X X X

Providers pursuing aggressive strategies to reduce uncertainty X X

Salek et al (2022) Inadequate staff/resources [insufficient resources and staff; increased staff burnout; potential poor continuity of care when PCP is unavailable] X

Physician resistance [culture shift required; preference to prime family to PC after relationship building; need to optimize consult model prior to embedded model] X X X X

Increased stress to patients/families [PC involvement risks overwhelming families or lead to confusion navigating hospital resources, trauma related to reliving cancer history with many providers] X X

Role clarity issues X X X

Power struggles X

New obstacles of communication and coordination with new model X X

Siler et al (2019) Timing and staff X

Difficult to assess spiritual needs due to time constraints X X

Constraints challenge to follow-up with patients throughout their treatment due to inadequate social work staffing X X

Need for clinician education on palliative care services to increase organizational buy-in X X X X

Lack of clarity on palliative care services among clinicians who are not a member of a specialized palliative care team X X

Challenge introducing PC due to the stigma associated with it X X X

Planning interdisciplinary care particularly communication, especially around goals of care X X X

Care coordination by addressing social needs of patients and family caregivers due to limited availability of resources, such as a lack of support groups for patients and family caregivers X X X X X

Addressing psychological needs patient and family well-being or any related distress associated with illness X X X

Education in providing spiritual support for patients and family caregivers / addressing patient and family caregiver spiritual needs X X X X

Providing culturally respectful care X X X X

Addressing patient and family caregiver spiritual needs X X

Smith et al (2000) Difficult for medical oncologists to make the transition to palliative care X X

Doctors fail to use prognostic information, ignore available help with end-of-life issues from a trained counselor/nurse, and fail to confront the issue of dying X X X

People do not want to die and we are not good enough at predicting when death is certain to refer to hospice X X

Need new models of care and better coordination of care X

Cost constraints as terminally ill patients could be undervalued X

Patient autonomy may be lessened and patients may have access to less treatment options X X X

Fewer available home care and hospice services X X

New drugs and treatments are often in need of improvement X

Tyler et al (2015) Special Populations as a barrier to culture change X X

Reliance exclusively on hospices for PC needs of residents and information about PC X X

General ignorance about the meaning of PC and lack of understanding about why its implementation is important X X

Lack of external resources and general information about PC and its importance (dearth of resources on how, why, and when to incorporate PC in NHs) X

Lack of feel good aspect / buzz due to discomfort many feel in relation to the topic of death and dying X X

Walling et al (2017) Long visits since NP spends considerable time with patients with complex issues X X

Queue of patients with advanced cancer waiting to be seen X

Not feasible under a standard fee-for-service reimbursement mechanism X

Fee-for-service does not adequately compensate time-intensive palliative care in the outpatient setting X

About half of the activities performed by the NP during the evaluation period could be performed by a trained social worker or RN X X

Limited funding for staffing X

Being overwhelmed with referrals X X X

Weng et al (2022) Limited community awareness X

Poor reimbursement mechanisms to support PC programs where patient volume is low X

Lack of human resources to provide services X

Lack of clinical knowledge / experience with PC X X

Inadequate care coordination between providers/settings X X X

Medical staff commitment / buy-in to PC X X

Wiener et al (2015) Limited availability of health providers who know about treating young adults with cancer X X X

Inadequate education of clinicians X X

Inconsistency in definitions of adolescents and young adult cancers X X

Trainees experience changes in their learning needs during their progression through sequential phases of training X X

Variability in AYAs decision-making needs due to complex nature of roles and decisional contexts in this age group X X X

Underreporting of mental health symptoms to maintain a sense of normalcy X X

Coping with loss X X X

Clinicians with insufficient education, hands-on training, and support in the delivery of EOL care to AYAs are susceptible to increased stress and feelings of despair, inadequacy, failure, depression, and burnout X X

AYAs and families can have negative associations with the term palliative X X

Yabroff & Mandelblatt (2004) Societal attitudes towards cancer and death, both reflected and influenced by media representation X X

Ongoing debate over physician-assisted suicide X X X

Medicalization of end-of-life care [Societal level] X

Rapid changes in the health care delivery system(s) over the past decade X

Cost containment efforts X X

Limited availability of coordinated end-of-life services X

Fragmented coverage of end-of-life care by insurers X X

Increased reliance on informal caregiving X X X

Regulatory restrictions on pain management X X

Poor provider-patient-caregiver and provider-provider communication X X

Under-referral to specialists and/or hospice care X X

Limited availability to recognize and treat common symptoms of advanced cancer X

Lack of training in palliative care X

Patients ability to confront death X

Patients attitudes towards care X X

Lack of, or inadequate, health insurance X X X X

Interlevel conflict X

Collective reluctance to discuss prognosis X X X

Heterogeneity of patients at the end-of-life X X X

Use of proxy respondents while incorporating measures of the family experience X X X

Introduction of bias in patient-assessed measures X

Lack of data availability X

Need to reconcile traditional care and palliative care X X X X

Zubkoff et al (2018) Lack of appropriate measures to assess implementation of a palliative care program X

Variations in initial site readiness X

Limited personnel resources, including a lack of dedicated program staff and palliative care specialists X X

Increasing clinical responsibilities for clinicians who had planned to devote time to ENABLE X X

Research grant provided sites with only meager start-up funds and did not cover salary support X

Difficulties securing adequate space X

Limited time to launch program X

Lack of a standardized IRB approach across sites X X

Data-sharing restrictions at several sites made centralized data collection difficult X X

Total 86 69 155 39 43

OPEN IN VIEWERTable 3. Barriers Classified Based on Barrier Category Themes.

Articles Barriers Barrier Theme Category

Lack of training and educational opportunities Misconceptions and negative assumptions about PC Lack of adequate knowledge about patient suitability for PC Communication and Health Literacy Challenges Inadequate size of PC trained workforce Funding and reimbursement Challenges Absence of validated PC guidelines Structural and regulatory challenges in healthcare settings Cultural, religious, and language issues Limited PC research Social determinants of health Technology Issues Personnel Challenges and High Turnover Limited retention and High attrition Generalizability COVID-19 pandemic

Aldridge et al 2015 Lack of adequate education/training for medical residents x x

Perception of palliative care as end-of-life care by healthcare providers and the public x x x

Inflated expectations regarding critical care therapies x x x

Perception that palliative care precludes more aggressive treatment x x x

Physician concern that a palliative care referral will alarm patients and families x

Physicians lack of familiarity with availability and suitability of hospice x x

Inadequate size of the palliative medicine-trained workforce x x

Lack of funding x

Medicare funding does not support palliative medicine specialty training x x x

Current palliative medicine fellowship training programs are inadequately supported by scarce philanthropic funding x x

Challenge of identifying patients appropriate for palliative care referral x

Lack of clear guidelines regarding the identification of patients appropriate for palliative care consult (ED setting) x x

Lack of 24h availability of a palliative care team (ED setting) x

Need for culture change regarding palliative care across settings x

Fragmented healthcare system in the United States x

Healthcare system neither recognizes nor pays for the day-to-day long-term services needed for people with serious illness x x

Need for greater funding for research x

No study section that specifically focuses on palliative care, and existing study sections tend to have a maximum of only one to two reviewers with expertise in palliative care research x

Peers with appropriate content and methodological expertise in palliative care rarely review palliative care grant submissions, reducing their likelihood of being funded x x

Lack of adequate reimbursement for palliative care for complex patients x x

Absence of incentives that reward hospitals for offering palliative care consultation or early hospice referral for patients with complex, multiple comorbidity, and end-stage disease x x

Regulatory barriers to greater palliative care integration, particularly in the nursing home setting x

Misperception that palliative care is incompatible with the restorative focus of nursing home reimbursement and regulation x x x

Prospective reimbursement categories that must be used by nursing homes and Resource Utilization Groups do not include palliative care x x

Armstrong et al (2021) Lack of physician knowledge about quality end-of-life care in dementia x x

Difficulty assessing symptoms of dementia x x

Lack of physician recognition of terminal dementia stages and dementia as a cause of death x x

Bakitas et al (2021) Poverty, underinsurance, low technology and broadband availability, and health literacy leave patients in low-income areas excluded from telehealth access x x x x

Digitally illiterate patients unable to participate in telehealth x x

Becker et al (2017) Lack of support for nursing provision of primary palliative care x x

Benesch et al (2022) Time constraints x

Lack of prior knowledge of patients' disease process and prognosis, which can be challenging to obtain in an ED visit x x

Lack of access to specialized palliative care services x x

Structural barriers such as crowded and loud environment, no access to a private room x

Communication difficulties due to language barriers, health status, or disability x x

Navigating complex family structures x

Difficult to engage nurses and PAs in intervention, as they do not have protected educational time to attend sessions and are not offered continuing education credits for attendance x x x x

Brian Cassel et al (2021) No dedicated funding source akin to the Medicare hospice benefit x x

Cost of interdisciplinary teams typically exceeds fee-for-service revenue generated by billing providers, so programs struggle to secure the staff resources required x x x

Current US health care system gives strong preference to profit centers that generate new revenue x x

Hospitals tax status and bed size are strong correlates of palliative care adoption x x

Czynski et al (2021) Significant coordination necessary for multiple departments to collaboratively provide care via flexible pathways

Challenging when care team confronted with unexpected diagnosis x x x

Birth at an unscheduled time may lead to challenges in the implementation of one-to-one nursing care that is the backbone of this care model x x

Low number of families participating in the program x

Operating room delays x

Dimartino et al (2019) Workforce limitations in their ability to respond to all patients in need x x

Need to balance desire to provide services with availability of trained work force that can deliver quality palliative care x x

Ferris et al (2007) Take months to years to develop guidelines X X

Data collection might be burdensome X

Feudtner et al (2007) Communication challenges X

Misconceptions due to strong religious beliefs X X X

Finlay et al (2018) Funding limitations and challenges across models X

Patients with advanced cancer may face challenges in access of care in clinic settings because of physical, functional, or resource-based limitations X

Additional research is needed to establish innovative models of care X

Frendak et al (2020) Triage went through changes over a few months, and there was no consecutive collection periods X

Staffing changes or unidentifiable factors could influence outcome due to study design X X X

Using notes to quantify visits which might lead to underreporting of visits X X

Demand for PC services exceeds current resources X X

Harrison et al (2022) Lacked racial and socioeconomic diversity and did not represent all issues patients living with dementia (PLWD) and care providers face X X

Small sample size X

Recruitment challenges due to inability of PLWD patients to complete consent process) X X

COVID interrupted member checking to validating findings X

Conducted in US and might not translate to international audience X

Huang et al (2011) The comparison of the hierarchy of item difficulties between children with life-threatening conditions (LTC) and healthy children were not based on same calibrated metrics X

Time lag between health status may differ due to periods of data collection X

Risk of Response bias since reported differences between responders and non-responders X

Limited generalizability of findings to entire population of children with LTC X

Parent proxy-report instead of child self-report X

Use of CRGs to classify children into health status which can lead to inherent bias X X

Cross-sectional data does not consider disease progression X X

Gaps in coverage and provider miscoding that may have occurred X X

Hutt et al (2018) Small sample size X

Lack of Access to Housing Appropriate to People With Declining Functional Capacity X

Managing Symptoms in the Unstable Housing Context X

Care Discontinuity Between Health Systems and Within VA X

VA Regulations Pose Barriers to Care X

Competition for Resources That Could Help Homeless Veterans at EOL X X

Isaacson et al (2015) Limited information in literature on palliative or EOL in tribal communities X X

Social-ecological determinants related to issues of access X X

Excluded viewpoint of NA/AI afflicted with chronic illness X

Small sample size X

Research team was compromised of only Caucasian X

Insufficient funding, lack of infrastructure, and misconceptions X X X

Iyer et al (2019) Limited guidance on palliative care for COPD patients X X X X

COPD family caregiver research is limited X

No studies have explored perspectives on early palliative care needs in COPD across Global Initiative for Chronic Obstructive Lung Disease X

Expanding early palliative care beyond cancer to nonmalignant chronic diseases has not been well accepted due to limited awareness and misconceptions of palliative care X X X

Conflicting opinions on whether early palliative care should be provided by specialist clinician or by pulmonologist, respiratory nurses or therapists X

Small sample size limitation and single center design X

Excluded patients without family caregiver, who have unique social support needs X

Kamal et al (2018) Change management transformative cultural change involving unlearning and reimagining roles and identity can be difficult X X X

Performance vital to have a balanced set of measures, but can be difficult with different stakeholders with differing interests X

Policies vital for healthcare policies to support engagement of patients and families with palliative care and reward better health status and quality of life X X

Payment and resource allocation supportive financing critical to the sustainability X

Katoaoka-Yahiro et al (2017) Necessary to have continuous mentorship and resource support from administration X X X

Lack of training for ethnically diverse staff X X X X X

Conflicting staff schedules X X

High staff turnover X X X

Kaye et al (2015) Stigmatization of the phrase palliative care X X

Discrepancies among perceptions held by pediatric oncologists, other members of the team, and parents X X X

Lack of formal PPC education for pediatric oncologists X X X

Reliance on buy-in and collaboration between hospital-based and community-based providers X X

Presumptions of family as giving up X X

Preconceived notions about logistical and emotional aspects of receiving home-based or hospice-based care X

Insufficient numbers of clinicians have the training to provide home-based care to medically complex children X X

Lack of funding on both national and state levels X X

Identifying high quality local programs that are comfortable with providing care to children with life-threatening conditions X X

Availability of only few hospice programs with low pediatric census to acquire or maintain comfort and expertise in this population X X X X

Financial barriers as they pertain to insurance reimbursement X X X

ACA dichotomy of choosing either disease-directed therapy or hospice care X

Exclusive limitation of application to children who are eligible for Medicaid or the State Childrens Health Insurance Program X

Kobler et al (2011) Low access to hospice service X

Time constraints in delivering pediatric palliative care X X

Difficulty with shifting assignments or workload to accommodate the babys needs X

Language and cultural barriers X X X

Lafond et al (2019) Physicians and advanced practice registered nurses requesting separate educational experiences to feel more free to discuss moral distress X X

Different learning styles between physicians and nurses X X

Difficulty in getting the time off to attend all training sessions X X X

Individual mentoring on the clinical units difficult to schedule as participants did not consistently provide their schedules X X

Lam et al (2019) Need to better align financial incentives with high-quality patient-centered care X

Limited active participation from governmental organizations to accelerate innovation compared to other countries X

Maxwell et al (2022) Shortage of palliative care specialists X X X

Educating ICU professionals may not be enough to change the culture of ICU practice X X X

McAndrew et al (2021) Unrealistic patient and family expectations and disagreements between patients and families and the ICU team about goals of care X X

Variable provider attitudes about the role of palliative care X X X

Differing opinions about what specific triggers should be used for automatic palliative specialist consults X X

Nurse and physician disagreement about whether bedside nurses can request a palliative specialist consult X X

Inadequate support for junior physicians during end-of-life decisions X X X

Disagreement among healthcare professionals about who can benefit from palliative care X X X X

Identification of the best strategies for integrating palliative care in the ICU X

Limited metrics to evaluate palliative care integration and collaboration in the delivery of ICU care X X

Pfeifer et al (2006) Patient volume and time constraints leading oncologists and staff to focus on medical care of patient limiting facilitation of supportive, community-based care X X

Oncologists and staff unaware of patients insurance status X X X

Program interpreted as being only for patients approaching death X X

Palliative care is not well understood X X X

Program was viewed as having traditional managed care agenda, whereby treatments might be questioned or denied X

Staff members were unsure of HIPAA regulations related to making such referrals X X X

New programs are often forgotten, especially if outcomes are not yet known X

Piamjariyakul et al (2021) Low number of participants X X

Requena et al (2022) Patients voices, especially from younger children, fathers, and minority families were less represented X X X

Under-reporting of symptoms X X X X

Tolerance/Minimalization

Lack of Help Seeking

No standardized assessment tools X X X X

Limited documentation of pharmaceutical treatments X X X X

Lack of Integrative Strategies X X

Lack of Active Symptom Follow-up X X X X X

Rushton et al (2005) Time constraints, lack of trust, and limited opportunities to build relationships with patients, families, and team members X X X X

Decisional conflict arising when choices involve potential risk, loss, or regret

Lack of information about alternatives and consequences, limited personal experience on which to base the decision, and perceived pressure from others who are invested in the decision to pursue palliative care X X X

Providers pursuing aggressive strategies to reduce uncertainty X X X

Salek et al (2022) Inadequate staff/resources [insufficient resources and staff; increased staff burnout; potential poor continuity of care when PCP is unavailable] X X X

Physician resistance [culture shift required; preference to prime family to PC after relationship building; need to optimize consult model prior to embedded model] X X

Increased stress to patients/families [PC involvement risks overwhelming families or lead to confusion navigating hospital resources, trauma related to reliving cancer history with many providers] X X X X

Role clarity issues X X X

Power struggles X

New obstacles of communication and coordination with new model X X

Siler et al (2019) Timing and staff X X X X

Difficult to assess spiritual needs due to time constraints X X X

Constraints challenge to follow-up with patients throughout their treatment due to inadequate social work staffing X

Need for clinician education on palliative care services to increase organizational buy-in X X X

Lack of clarity on palliative care services among clinicians who are not a member of a specialized palliative care team X X X

Challenge introducing PC due to the stigma associated with it X X

Planning interdisciplinary care particularly communication, especially around goals of care X X

Care coordination by addressing social needs of patients and family caregivers due to limited availability of resources, such as a lack of support groups for patients and family caregivers X

Addressing psychological needs patient and family well-being or any related distress associated with illness X

Education in providing spiritual support for patients and family caregivers / addressing patient and family caregiver spiritual needs X X X X

Providing culturally respectful care X

Addressing patient and family caregiver spiritual needs X

Smith et al (2000) Difficult for medical oncologists to make the transition to palliative care X X X

Doctors fail to use prognostic information, ignore available help with end-of-life issues from a trained counselor/nurse, and fail to confront the issue of dying X X

People do not want to die and we are not good enough at predicting when death is certain to refer to hospice X X X

Need new models of care and better coordination of care X X

Cost constraints as terminally ill patients could be undervalued X X

Patient autonomy may be lessened and patients may have access to less treatment options X X

Fewer available home care and hospice services X

New drugs and treatments are often in need of improvement X

Tyler et al (2015) Special Populations as a barrier to culture change X

Reliance exclusively on hospices for PC needs of residents and information about PC X X

General ignorance about the meaning of PC and lack of understanding about why its implementation is important X X

Lack of external resources and general information about PC and its importance (dearth of resources on how, why, and when to incorporate PC in NHs) X X X X

Lack of feel good aspect / buzz due to discomfort many feel in relation to the topic of death and dying X X X

Walling et al (2017) Long visits since NP spends considerable time with patients with complex issues X X

Queue of patients with advanced cancer waiting to be seen X X

Not feasible under a standard fee-for-service reimbursement mechanism X

Fee-for-service does not adequately compensate time-intensive palliative care in the outpatient setting X

About half of the activities performed by the NP during the evaluation period could be performed by a trained social worker or RN X

Limited funding for staffing X

Being overwhelmed with referrals X X X

Weng et al (2022) Limited community awareness X X X

Poor reimbursement mechanisms to support PC programs where patient volume is low X

Lack of human resources to provide services X

Lack of clinical knowledge / experience with PC X X

Inadequate care coordination between providers/settings X X

Medical staff commitment / buy-in to PC X

Wiener et al (2015) Limited availability of health providers who know about treating young adults with cancer X

Inadequate education of clinicians X

Inconsistency in definitions of adolescents and young adult cancers X

Trainees experience changes in their learning needs during their progression through sequential phases of training X

Variability in AYAs decision-making needs due to complex nature of roles and decisional contexts in this age group X X

Underreporting of mental health symptoms to maintain a sense of normalcy X X X

Coping with loss X

Clinicians with insufficient education, hands-on training, and support in the delivery of EOL care to AYAs are susceptible to increased stress and feelings of despair, inadequacy, failure, depression, and burnout X X X

AYAs and families can have negative associations with the term palliative X

Yabroff & Mandelblatt (2004) Societal attitudes towards cancer and death, both reflected and influenced by media representation X

Ongoing debate over physician-assisted suicide X

Medicalization of end-of-life care [Societal level] X

Rapid changes in the health care delivery system(s) over the past decade X

Cost containment efforts X

Limited availability of coordinated end-of-life services X X X

Fragmented coverage of end-of-life care by insurers X

Increased reliance on informal caregiving X X X

Regulatory restrictions on pain management X

Poor provider-patient-caregiver and provider-provider communication X

Under-referral to specialists and/or hospice care X X

Limited availability to recognize and treat common symptoms of advanced cancer X X

Lack of training in palliative care X X X

Patients ability to confront death X

Patients attitudes towards care X X X

Lack of, or inadequate, health insurance X X

Interlevel conflict X X X

Collective reluctance to discuss prognosis X X X

Heterogeneity of patients at the end-of-life X

Use of proxy respondents while incorporating measures of the family experience X X

Introduction of bias in patient-assessed measures X X X X

Lack of data availability X X

Need to reconcile traditional care and palliative care X X

Zubkoff et al (2018) Lack of appropriate measures to assess implementation of a palliative care program X X

Variations in initial site readiness X

Limited personnel resources, including a lack of dedicated program staff and palliative care specialists X

Increasing clinical responsibilities for clinicians who had planned to devote time to ENABLE X

Research grant provided sites with only meager start-up funds and did not cover salary support X

Difficulties securing adequate space X

Limited time to launch program X

Lack of a standardized IRB approach across sites X X

Data-sharing restrictions at several sites made centralized data collection difficult X X

Total 32 35 44 30 24 33 18 86 22 23 29 8 43 4 24 1

OPEN IN VIEWERTable 4. ERIC Strategies by Domain, Rank, and Frequency of Occurrence.

# Strategy Domain Rank Strat. (%)

6 Develop and organize quality monitoring systems Use evaluative and interative strategies 1 100

5 Develop a formal implementation blueprint Use evaluative and interative strategies 2 97

7 Develop and implement tools for quality monitoring Use evaluative and interative strategies 2 97

38 Conduct ongoing training Train and educate stakeholders 3 74

53 Intervene with patients/consumers to enhance uptake and adherence Engage consumers 4 71

36 Conduct educational meetings Train and educate stakeholders 4 71

16 Tailor strategies Adapt and tailor to context 5 68

15 Promote adaptability Adapt and tailor to context 6 66

54 Involve patients/consumers and family members Engage consumers 7 63

19 Build a coalition Develop stakeholder interrelationships 7 63

20 Capture and share local knowledge Develop stakeholder interrelationships 7 63

39 Create a professional learning collaborative Train and educate stakeholders 8 61

55 Prepare patients/consumers to be active participants Engage consumers 9 55

40 Develop educational materials Train and educate stakeholders 9 55

41 Distribute educational materials Train and educate stakeholders 10 50

43 Provide ongoing consultation Train and educate stakeholders 10 50

OPEN IN VIEWERResults

The initial study extraction resulted in 1805 studies from PubMed (n = 283), Embase (n = 1482), Medline (ProQuest) (n = 20), and CINAHL (n = 10). Based on our inclusion and exclusion criteria and after accounting for duplicates, a total of 38 eligible studies were selected for analysis (Figure 1).

The 38 eligible studies were published between 2000 and 2022 (Table 1), with the majority of the studies (30/38, 79%) being published in 2015 or later. Study designs included descriptive study (n = 13), qualitative study (n = 7), quasi-experimental study (n = 4), case study (n = 4), pilot study (n = 3), cross-sectional study (n = 2), prospective cohort study (n = 2), and mixed methods study (n = 2), and cluster randomized trial (n = 1). 32% (n = 12) of the studies were either interventional/experimental in nature (n = 5) or were designed to evaluate outcome data from implemented interventions (n = 7) (Table 1).

Priority Population, Key Stakeholders, Chronic Illnesses, & Settings

Priority populations and key stakeholders who were actively involved (or prioritized) in implementation activities were adolescents/adults, neonates/children, and/or palliative care provider teams (Table 1). Chronic illnesses addressed consisted of cancer at different stages, dementia, heart failure, obstructive pulmonary disease, ER-related chronic diseases, life-threatening conditions in children and neonates, COPD, pediatric cancers, advanced renal disease, and advanced interstitial lung disease. Palliative care settings were diverse in nature and comprised cancer palliative care units (n = 7); hospital/organizational palliative care settings (n = 5); community-based palliative care settings (n = 4); rural palliative care settings (n = 2); and other specialty palliative care units (Table 1). Specific D&I strategies were tailored and applied to the different contexts of chronic illnesses which further emphasizes the applicability of the identified frameworks to satisfy the needs of diverse population groups seeking palliative care.

Application of D&I Theories & Patient-Centered Frameworks

Only 6 out of the 38 (16%) included studies applied a D&I theory and/or framework. The RE-AIM framework was the most prominently cited (n = 3), followed by the Diffusion of Innovation Model (n = 2), the CONNECT framework (n = 1), and the Transtheoretical Stages of Change Model (n = 1). Other palliative care patient-centered models, listed inTable 1, were adapted and utilized in the remaining studies.

D&I Barriers

Two hundred and thirty-six barriers were reported in all of the 38 studies and were then matched to the five levels of the socio-ecological model (SEM): individual (n = 86), interpersonal (n = 69), organizational (n = 155), community (n = 39), and society/policy (n = 43) (Table 2). Barriers were also classified into major theme categories based on recurrence of barriers themes across the socio-ecological model in included studies (Table 3). Some barriers were classified into multiple SEM levels and were thus matched to more than one theme category. For example, Aldridge et al. mentioned Lack of adequate reimbursement for palliative care for complex patients as a barrier, which fits into the individual and society/policy levels of the SEM.47The barrier category themes related to this barrier and its subsequent SEM classification included funding and reimbursement challenges and structural and regulatory challenges in healthcare settings. Most cited barriers (n = 86) sorted into the Organizational/Society-Policy category of structural and regulatory challenges in healthcare settings, followed by Lack of adequate knowledge about patient suitability for PC (n = 44), Personnel challenges and high turnover (n = 43), Misconceptions and negative assumptions about PC (n = 35); Funding and reimbursement challenges (n = 33), Lack of training and educational opportunities (n = 32), and Communication and health literacy challenges (n = 30). Other barrier categories included Social determinants of health (n = 29), Inadequate size of PC trained workforce (n = 24), Generalizability (n = 24), Limited PC research (n = 23), Cultural, religious, and language issues (n = 22), Absence of validated PC guidelines (n = 18), Technology Issues (n = 8), Limited retention and high attrition (n = 4), and COVID-19 pandemic (n = 1) (Table 3).

Implementation Strategies

All nine ERIC domains were represented, and all extracted D&I strategies were matched to compatible ERIC strategies (Table 4); however, two ERIC strategies (#60 and #63) were not relevant to any of the extracted strategies. Four hundred and seventeen D&I strategies (n = 417) were identified, corresponding to 71 (97%) of the ERIC strategies. A range of eight through seventy-one strategies were highlighted in any one study. The most frequently reported ERIC strategy was strategy #6 Develop and organize quality monitoring systems, as it identified in all 38 of the included studies (Table 4). Fifteen other ERIC strategies were highly ranked as the top 10 strategies for D&I success in palliative care settings based on their reference across included studies. These were Intervene with patients/consumers to enhance uptake and adherence (#53), Prepare patients/consumers to be active participants (#55), Involve patients/consumers and family members (#54), Develop a formal implementation blueprint (#5), Develop and implement tools for quality monitoring (#7), Promote adaptability (#15), Conduct educational meetings (#36), Conduct ongoing training (#38), Build a coalition (#19), Tailor strategies (#16), Capture and share local knowledge (#20), Create a professional learning collaborative (#39), Develop educational materials (#40), Distribute educational materials (#41), and Provide ongoing consultation (#43) (Table 4).

Discussion

This scoping review examined barriers, mitigating D&I strategies, and patient-centered frameworks that have been adopted in PC settings to improve the delivery of palliative care services and overall health outcomes of patients with chronic illnesses. Analysis of the 38 included studies may enhance our understanding of barriers and D&I models specifically oriented to patients seeking PC services for diverse chronic illnesses in the United States. This could inform the development and implementation of evidence-based PC programs and/or protocols to enhance patient health outcomes and personal satisfaction with care received (Table 1).

D&I Theories and Patient-Centered Frameworks

The majority of these studies have been recently published, with a total of 79% being published since 2015. Yet, despite the recognition of the importance of D&I science in improving equitable access to high quality care for patients with chronic illnesses, D&I research pertaining to the palliative care field remains limited in scope. Out of the 38 studies, only 6 (16%) utilized a D&I theory and/or framework to guide the development, dissemination, and implementation of evidence-based practices for the delivery of palliative care services. This finding aligns with the reported barriers to translating research in hospice and palliative care settings, which further widens the gap between evidence and practice.38A survey of federally funded research projects by OMara et al. emphasized the lack of adoption of published guidelines and recommended procedures in palliative care practice, despite the availability of an extensive body of research supporting such standards of care.48Additionally, a meta-analysis of 29 randomized controlled trials carried out by Northouse et al. highlighted that although a large number of theory-based interventions were successful in significantly reducing caregiver burden, improved caregivers ability to cope, increased their self-efficacy, and improved aspects of their quality of life, rarely any have been implemented in clinical practice settings, leading to the poor treatment of pain and cancer treatment-related symptoms.49There is a need to discuss how implementation science principles and frameworks improve the design and implementation of protocols and interventions in palliative care to maximize the likelihood for translation and long-term adoption in clinical practice.38Additionally, future studies can explore the adoption of D&I models, such as the RE-AIM framework, to further assess its feasibility across diverse palliative care settings.

Barriers & Strategies to the D&I of PC evidence-based programs/protocols

There is a critical need to identify and address D&I barriers at multiple levels of the socio-ecological model to ensure the successful completion of implementation efforts. The most cited barriers were classified as challenges at the organizational level of the SEM and were further categorized into the Organizational/Society-Policy category of structural and regulatory challenges in healthcare settings. Such barriers stem from the undefined capacity and realm of palliative care services in the U.S. health care system, the lack of adequate providers for the delivery of such specialized care, the weakness of multidisciplinary teamwork in palliative care settings, and the ambiguous yet many guidelines available to guide delivery of such care.37D&I ERIC strategies matched to extracted strategies in included studies such as Developing and organizing quality monitoring systems, Developing a formal implementation blueprint, and Developing and implementing tools for quality monitoring can aid in the management of system-level challenges affecting the overall performance of the organization when it comes to delivering specialized palliative care.

A frequently cited barrier was Personnel Challenges and High Turnover (58%),50-71which stems from the continuous loss of acquired talent and healthcare staff who are adequately trained to deliver specialized care for patients with chronic illnesses, and the need to accustom new personnel to the patient population, the protocols to be followed, and the high quality of services that should be attained. Insufficient skills needed to tailor palliative care services to satisfy patient needs were one of the major barriers cited across studies. Hence, strategies such as expansion of the palliative care workforce, training of residents in palliative care skills of advanced care planning communication, and Training of clinicians on the presentation and reinforcement of services information are necessary for sustained dissemination and implementation of palliative care protocols and interventions within clinical settings.47,54,59Additional ERIC strategies included under the two domains training and educating stakeholders and developing stakeholder interrelationshipscould help address those common barriers.

Another challenge hindering sustainability of D&I efforts is funding. Funding and reimbursement challenges were frequently reported by palliative care teams and organizations offering such specialized care. Specific financial barriers included lack of reimbursement for the day-to-day long-term services needed for people with serious illness, limited opportunities and organizational financial allocation for fellowships in palliative care, and gaps in coverage and provider miscoding that may have occurred.47,51,55-57,67,68,70-78Strategies such as greater investment in palliative care research, developing appropriate compensation by Medicare and private insurance to ensure provision of time-intensive, expert palliative care of complex, and seriously ill patients, grant funding opportunities, and philanthropic investment at the local, state, and national levels focusing on social change strategies of policy and payment, driving public awareness, and new start-up innovations were leading dissemination and implementation initiatives employed in palliative care clinical settings to deal with limited funding opportunities.47,50,51Continuous delivery of palliative care services tailored and adapted to the specific patient needs is predicated on sustained financial support without which D&I efforts are hobbled.37Additional D&I strategies that can encourage unity at the organizational level while ensuring patient satisfaction with care delivery encompassed teaching patients decision-making skills tailored to their values and preferences; engaging patients and caregivers in advance care planning; multiple stakeholder and communication update meetings; listening and engaging in cyclic process to improve all aspects of clinical care; and training all members to introduce the team and the concept of PC to patients. Organizational efforts should also integrate quality improvement tools and quality improvement efforts to ensure effective data management processes, capacity-building efforts, patient and caregiver involvement, provider and staff training for elevated skills in care delivery, as well as collaboration with academic researchers and local and national stakeholders.

At the policy level, studies describing palliative care planning, implementation, and sustainability highlighted the need for high-end reform through the creation of new health policies to address societal and economic obstacles to accessing optimal healthcare services. These overlap with other socioecological levels and included the high costs of medication and treatment for patients with chronic illnesses, the fragmented U.S. healthcare system, inadequate funding allocations to support palliative care patients through the availability of sufficient and well-trained healthcare personnel, infrastructure shortcomings, challenging Medicare policies, and limited availability of palliative care units across the country despite the high demand for such type of care.47,51,55,57,64,72,79Although all nine ERIC domains were mentioned in the studies, the domain relating to change at the policy level had the least number of cited D&I strategies. Future work could explore the multilevel policies that impact D&I outcomes in patients with chronic illnesses when seeking palliative care services. Culturally tailored strategies that encompass the patients needs while incorporating physician and family member involvement are essential to overcome potential barriers.

Strengths & Limitations

To our knowledge, this study is one of the first to explore barriers encountered and mitigating D&I strategies and frameworks applied in palliative care settings. Yet, this study is not without limitations. First, although the authors carried out a comprehensive search of four databases, this scoping review did not encompass a search of gray literature, case reports, press releases and other non-peer review sources. It only included articles published from 20002023. Reviews that are broader and more detailed in scope are recommended, particularly since D&I is relatively a new field and its application in palliative care settings remains limited in scope. Second, it is possible that an inadvertent omission of search terms referring to D&I has occurred due to the continuously evolving terms referring to the D&I field. The mesh terms included as many D&I-related keywords as possible, and the utilization of well-established scoping review protocols likely mitigated this concern. Third, matching extracted D&I strategies to ERIC strategies was challenging due to the significant difference in terms used to identify any given strategy. There is a need for a standardized set of terminologies that represent a challenge for any emerging field. Finally, the ERIC strategies were initially created and tailored for use in clinical settings.35Although this taxonomy is holistic in nature and provides a useful comparison for clinical settings, it may omit key components that are specific to the delivery of specialized care, such as palliative care. Future studies should involve palliative care experts to further narrow and tailor strategies to promote equitable access to high quality and affordable palliative care services.

Conclusion

This scoping review informs future D&I efforts in U.S. palliative care settings to enhance practical application of D&I research findings. Results may contribute to informing and guiding future D&I initiatives for dissemination/adaptation, implementation, and sustainability efforts to improve patient health outcomes and personal satisfaction with care received. Future research efforts are needed to further enhance the adaptation of D&I informed programs, protocols, and evidence-based interventions to improve behavioral and environmental determinants influencing patient health outcomes in palliative care clinical settings.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDsLea Saccahttps://orcid.org/0000-0002-0629-2863Diana Lobainahttps://orcid.org/0000-0003-0623-7650References

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1 No. ERIC Strategies

2 3 4 Use evaluative and interative strategies

5 1 Assess for readiness and identify barriers and facilitators

6 2 Audit and provide feedback

7 3 Conduct cyclical small tests of change

8 4 Conduct local needs assessment

9 5 Develop a formal implementation blueprint

10 6 Develop and organize quality monitoring systems

11 7 Develop and implement tools for quality monitoring

12 8 Obtain and use patients/consumers and family feedback

13 9 Purposely reexamine the implementation

14 10 Stage implementation scale up

15 Provide interactive assistance

16 11 Centralize technical assistance

17 12 Facilitation

18 13 Provide clinical supervision

19 14 Provide local technical assistance

20 Adapt and tailor to context

21 15 Promote adaptability

22 16 Tailor strategies

23 17 Use data experts

24 18 Use data warehousing techniques

25 Develop stakeholder interrelationships

26 19 Build a coalition

27 20 Capture and share local knowledge

28 21 Conduct local consensus discussions

29 22 Develop academic partnerships

30 23 Develop an implementation glossary

31 24 Identify and prepare champions (represntation)

32 25 Identify early adopters

33 26 Inform local opinion leaders

34 27 Involve executive boards

35 28 Model and simulate change

36 29 Obtain formal commitments

37 30 Organize clinician implementation team meetings

38 31 Promote network weaving

39 32 Recruit, designate, and train for leadership

40 33 Use advisory boards and workgroups

41 34 Use an implementation advisor

42 35 Visit other sites

43 Train and educate stakeholders

44 36 Conduct educational meetings

45 37 Conduct educational outreach visits

46 38 Conduct ongoing training

47 39 Create a professional learning collaborative

48 40 Develop educational materials

49 41 Distribute educational materials

50 42 Make training dynamic

Supplementary File 2Supplementary File 3

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A palliative nursing strategy to enhance communication and support for patients and families in intensive care unitshttps://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154

HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" o ""Marie O'Kane

,

Kevin Gormley,

Jolly IsaacPublished Online:20 Apr 2023https://doi-org.ezproxy.uws.edu.au/10.12968/ijpn.2023.29.4.154SectionsPDF/EPUBTools

ShareAbstract

Aim:

There have been significant advancements in palliative nursing in health services, but less so in intensive care units (ICUs). The purpose of this literature review was to examine palliative nursing care in ICUs and consider how a nursing strategy could improve communication and support for patients and their families.

Method:

An exploratory literature review was conducted to evaluate and compare ICU care strategies with palliative support. The search was conducted using CINAHL Plus and Medline All databases and was limited to a 6-year period. Eight publications were selected for review and a full text review was undertaken using the Critical Appraisal Skills Programme systematic review checklist.

Results:

Two themes emerged around the use of palliative nursing strategies. These were: improving communication between health professionals and patients; and providing support for patients and families.

Conclusions:

Palliative nursing has the potential to improve the quality of communication in ICU settings and support for patients and families. Further training and preparation of nurses in palliative care would improve the patient and family experience during a critical and emotional period of health service provision.

Ensure access to your Institutional Subscription from anywhereWe strongly recommend creating a personal and secure login for our sites, which will automatically pair with Western Sydney University Library to streamline access across your institutional subscriptions, even when off-campus.

SIGN UP NOWAlready have an account?Sign inIn a series of papers, the World Health Organization (WHO) (WHO, 2017a;2017b;2018) said palliative care gave health professionals opportunities to offer care, focusing on meeting the needs of patients with life-threatening illnesses as well as support for families.

The WHO contended that palliative care should not be about hastening or postponing end-of-life care, but about enhancing the quality of care during this emotionally difficult time. A number of studies have concurred with this view, further agreeing that palliative care in intensive care units (ICUs) is essential (Parish et al, 2006;Perrin and Kazanowski, 2015;HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B18"Noome et al, 2016;HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B14"Mercadante et al, 2018;Wolf et al, 2019;HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B23"Vanderspank-Wright et al, 2019).

In the UK, the National Institute for Health and Care Excellence (NICE) (2015;2021) has advised that the value of conducting a needs assessment with patients and families depended on the availability and implementation of a palliative care strategy.HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B13"McCarroll (2018)concurred, suggesting that palliative care in ICU would improve the quality of care and that having the flexibility to initiate different strategies would contribute towards ensuring that care reflected the actual, presenting needs of patients and their families (HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B1"Athari et al, 2016;HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B9"Jakimowicz et al, 2017).

Method

A systematic review of the literature is a process of searching for and selecting articles to ensure a quality and robust review process and outcome. A search of the available literature was conducted with a view to review and compare care strategies in the ICU with palliative support.

The research articles were selected using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, which help refine the article search and align it with the focus and purpose of the search. This is a holistic approach that helps researchers to structure their search strategy and facilitate the interpretation of the data collected (Page et al, 2021).

The search was conducted using CINAHL Plus and Medline All databases and was limited through: combining key words such as nursing care, intensive care unit, palliative and family support (including inclusion, involvement and engagement); and limiting the search to articles that were available in full texts and published in English within a 6 year period (between 2015 and 2021).

This process narrowed the number of articles to 35. There were 22 from Medline; 11 from CINAHL Plus, with two additional records from reference lists. The search was further refined to include only studies involving adult patients (aged 18 years); studies that focused on children, parents and paediatric services were excluded. A total of 11 were selected for review (Figure 1) (Table 1), of which three were excluded (non-alignment with the review aim).

INCLUDEPICTURE "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/cms/10.12968/ijpn.2023.29.4.154/asset/images/medium/ijpn.2023.29.4.154_f01.jpg" * MERGEFORMATINET

Figure 1.Preferred Reporting Items for Systematic Reviews and Meta-Analyses search process

Table 1.Included studies

Author/country Aim Data collection method Key finding CASP score out of 20

Dale et al (2020)Canada Explore potentially modifiable support needs and care processes of importance to family caregivers of patients in ICUs Longitudinal, qualitative, descriptive interview study There are deficits in informational, emotional, training and appraisal of staff to support family caregivers of patients in ICU 16

Ganz and Sapir (2018)Israel To review ICU nurses' perception of high-quality palliative care Descriptive, correlational, cross-sectional design ICU nurses report on barriers to care 20

Ganz et al (2020)Israel To determine if a course in palliative care is associated with good knowledge, attitudes and practices Prospective longitudinal study Need to build capacity to provide palliative care 19

Kisorio and Langley (2016)South Africa Identify family members' experiences of end-of-life care in adult ICUs Descriptive, exploratory, qualitative design The findings reflect inadequate support for families with dying relatives in the intensive care unit -

Langley and Kisorio (2015)South Africa Explore ICU nurses' experiences of end-of-life care Exploratory, descriptive qualitative approach Dying patients and their families need to be continuously supported, and critical care nurses need specific support -

Leung et al (2017)Canada To generate further understanding of nurses' experiences of patients with chronic critical illness and their families Qualitative study using Thorne's interpretive description methods Formal structures are required to enable nurses support decision-making regarding timing of transitions for patients from palliation to end-of-life care -

Riegal et al (2021)Australia To evaluate values and experience in facilitating end-of-life care among intensive care professionals Cross-sectional survey Need to include patient and family and reflect preferences in ICUs, reflecting personal decision making -

White et al (2018)US To compare a multicomponent family support intervention delivered by the interprofessional ICU team with usual care involving patients with a high risk of death A stepped-wedge, cluster-randomised trial The quality of communication and patient- and family-centredness of care were better and the length of stay in the ICU was shorter with the intervention than with usual care -

Note:Critical Appraisal Skills Programme (CASP)

View asimage

A full text review was undertaken for the remaining articles (n=8) using theCritical Appraisal Skills Programme (CASP) (2023)systematic review checklist as a guide to determine suitability for the review and alignment with its focus and purpose.

All articles selected were from peer-reviewed journals and were methodologically sound and robust in terms of quality.

From reviewing all studies, two discrete themes emerged. These were using palliative care to: improve communication between health professionals and patients; and provide effective support for patients and families.

Communication

Langley et al (2015)andHYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B10"Kisorio and Langley (2016)reported that communication training, including specialist ICU workshops and communication techniques, improved both communication and care quality in the ICU.

The core requirement for effective palliative care is communication, which, when delivered well, contributes towards a meaningful, patient-focused approach, end-of-life care (Leung et al, 2017).

Ganz and Sapir (2018)conducted a cross-sectional study that examined the views of ICU nurses, and contended that ineffective communication acted as a barrier between health professionals.HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B22"Riegal et al (2021)argued that clinicians held a variety of perceptions about palliative care and how it could be implemented; nevertheless, there was unanimity around the need for effective communication with patients and their families to ensure that actual care both captured and reflected their views.NICE (2019)reported that poor communication within multidisciplinary teams was closely linked to a less than optimal palliative support. Effective communication skills enable nurses to properly assess, teach, counsel, intervene and validate their concerns for the needs of patients (White et al, 2018).White et al (2018)further argued that nurses should use their communication skills to advocate for patients in the specific clinical circumstances of ICU.

Riegal et al (2021)suggested communication and shared decision-making should occur more frequently as an interdisciplinary action, and also between patients and families (Boyle et al, 2017;HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B14"Mercadante et al, 2018). Communication with health staff was of particular value for patients and families (HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B24"Virdun et al, 2015). According toHYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B24"Virdun et al (2015), good communication leads to health professionals being perceived more positively (e.g., with respect, trust and confidence).

Poor communication can leave families feeling excluded from decision-making (Hansen et al, 2016). In addition, health professionals can become disconnected from patients when the quality of communication is not at an optimum level (HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B10"Kisorio and Langley, 2016).

Dale et al (2020)contended that a coordinated nursing approach in the ICU was required, with an ethos of life-preserving, hi-tech intense care alongside palliative support.

Their suggestion was that creating an integrated, interdependent strategy for nursing care would lead to the emergence of a revised model, where the best of both of these were captured, enabling a balanced caring environment.

Ganz and Sapir (2018)argued that ICU nurses needed to be competent in having end-of-life discussions with patients and families.Ganz et al (2020)further reported that nurses felt they had a moderate to high ability to provide palliative care, suggesting they can do so competently and give both physical and spiritual care at a high level.

Ganz et al (2020)indicated that a lack of palliative care preparation and training is a barrier to providing end-of-life care and should be addressed.Dale et al (2020)recommended that all critical care nurses should receive training on the principles of palliative care. They also said that palliative care should be included within a module in the ICU nurses' training programme.

Education and training for ICU nurses in palliative care can improve their knowledge, attitude, confidence and competence to deliver this form of patient support (Langley et al, 2015;Ganz et al, 2020).HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B10"Kisorio and Langley (2016)said that insufficient education and training for physicians and nurses was a significant barrier to providing palliative care in ICU.

Supporting patients and families

It is argued that nurses should receive specialist palliative training (Ganz and Sapir, 2018;HYPERLINK "https://www-magonlinelibrary-com.ezproxy.uws.edu.au/doi/full/10.12968/ijpn.2023.29.4.154" l "B14"Mercandante et al, 2018).Ganz et al (2020)also suggested that all ICU physicians should be trained in both specialist palliative care as well as in intensive care medicine.

Patient and family-centred assessment, documentation and nursing interventions are now the norm and the expected practice in the UK and were a major recommendation of theFrancis report (2013), which criticised the quality of care at an NHS trust.

What is required is a framework in which nursing goals and interventions can be adjusted along a continuum to facilitate the focus of care for the deteriorating patient towards a palliative approach (Leung et al, 2017). Such a strategy can have two benefits.

First, a culture of openness and trust between health professionals, patients and families can be created. Second, policies and procedures can be put in place to reduce inconsistencies in care and address poor service quality.

Such an approach should provide assurance for ICU nurses that their assessments of patient and family needs, and their documented nursing interventions accurately reflect requirements and preferences.

Conclusion

Despite palliative care and ICU nursing sometimes presenting as opposites and concerning for ICU staff and patients, the literature indicates a recognition that they are both essential, integrated components of care and should be available for patients and families in an ICU environment.

This review shows there is good evidence that the commitment is there. What is possibly lacking is the articulation of clear concepts and a theoretical underpinning on which an agreed understanding and focused research can be based.

Such frameworks can be informative and helpful and offer a guide for training and educational packages, which can integrate and weave interdependent strands of need to provide a cohesive service.

The result of this should be a service where patients and families are fully informed and immersed in the care that is provided and are fully supported by an equally prepared ICU team.

ICU settings should consider providing training in palliative care and communication. Through these measures, it is anticipated that nurses' skills, knowledge and competence in providing palliative care in ICU will improve, with them delivering care compassionately and competently to the patient and their family. ICU staff need to be confident in a role that supports the greater involvement of relatives and families in caring and the decision-making process.

It is clear from the evidence that a successful transition of care for ICU patients towards palliative support will be measured via the quality and clarity of communication in this complex, dynamic healthcare environment.

This is not easy to achieve, given the difficulties with fitting CPD training in and around work demands. Making this more difficult is that such training needs to be delivered as an interprofessional exercise.

There is need for further research into this area and reviews of cross-cutting themes. These should investigate: the value of effective communication in supporting relatives to be more involved in decision-making; and how ICU staff can capture their voice and integrate their preferences in decisions such as the transition of patients from technological, life-preserving interventions towards palliative care and support.

Palliative care has psychological benefits for patients, families and all members of the healthcare team. Barriers to providing palliative care in ICU still exist, despite legislation and local policies indicating the importance of high-quality palliative care.

Key points

Palliative care and intensive care nursing are sometimes perceived as opposites. It is argued here that this need not be the case. Drawing from this review, it is arguable that a revised organisational system is requiredIntensive care unit (ICU) settings needs to commit to building trust with and between stakeholders

Caring and technological advancement can be used to support interprofessional learning and improve the overall quality of communication in the ICU setting.

CPD reflective questions

Can improved communication between health professionals and families in the intensive care unit (ICU) setting enhance support for patients and families?

Would further training and preparation of nurses in palliative care improve the patient and family experience during critical and emotional periods of healthcare provision?

What are the opportunities of shared interprofessional education in a palliative care environment?

Instructions

Word count1500 word (+/- 10%). Please note that the reference list is not included in the word count. In-text citations are included in the additional 10%-word count. If you exceed the word limit by more than 10% the marker will stop marking.

Aim of assessment

The rise of social media and generative artificial intelligence (AI) has meant that misinformation and disinformation can be widely distributed. Nurses must be able to think critically and analyse evidence and information to provide accurate patient education and inform safe nursing practice. The aim of this assessment is to encourage students to critically analyse information related to healthcare and apply current evidence to refute or support the information.

Details

Aged care facilities provide care for older persons who are often living with life-limiting conditions. Commonly, palliative care is required by residents in aged care facilities to provide relief from symptoms and promote quality of life.

You are the Educator at Western Sydney Nursing Home (WSNH), a residential aged care facility. Part of your role as the educator at WSNH, is to ensure that staff, residents, families, and carers receive accurate information about their care. As the educator, you lead a team of staff on a project to create patient and family resources about palliative care at the facility. Your colleague has given you the information below to proofread before it is distributed to residents and their families. They confess that they had used generative AI as they had run out of time.

Using the provided Family Resource you are required to identify one key point which you will further explain or clarify using specific examples from scholarly sources. Your explanation will be in relation to each of these three short answer prompts.

Family Resource

Nurses can aid families and carers of palliative patients by offering education on symptom management, ensuring emotional support, and facilitating respite care. Person-centred care acknowledges the patients unique preferences, fostering comfort and dignity in their final moments. This approach alleviates anxiety, enhances trust, and promotes a sense of control, positively impacting the patients quality of life. Collaboration within multi/interdisciplinary teams enhances care coordination and information sharing. This prevents fragmented care, reduces errors, and tailors interventions to the patients evolving needs. Such teamwork optimises holistic care, providing comprehensive physical, emotional, and psychosocial support for the palliative patient.

Prompts:

Prompt 1: Strategies that a nurse may use to support, families and carers of palliative people as they provide end-of-life care to loved ones. (500 words)

Prompt 2: Justify how person-centred care impacts the palliative residents of WSNH. (500 words).

Article: Respecting the Autonomy of the Dying patient

file:///Users/zahrashafaq/Downloads/respecting-the-autonomy-of-the-dying-patient.pdf

https://www-cambridge-org.ezproxy.uws.edu.au/core/books/approaches-to-death-and-dying/5BC1F02391FBCF9F5C7C73909601E8B7

Using Person centered Dissemination.

https://journals-sagepub-com.ezproxy.uws.edu.au/doi/full/10.1177/10499091231214241

Prompt 3: What is the benefit of collaboration and teamwork within the multi/interdisciplinary teams for the palliative residents of WSNH? (500 words).

Each short answer response should be 500 words in length and refer explicitly to the case study.

Format:

All assignments are to be typed. Typing must be according to the following format:3 cm left and right margins, double spaced. Font: Arial or Times New Roman Font size: 12pt, See further submission requirements below