Examining Workplace Education for Long-Term Care Staff to Advance Expertise in Palliative Care for Persons With Dementia: A Scoping Review Protocol

The modernization of palliative care training in long-term care (LTC) homes is mandated by Ontario’s Fixing Long-Term Care Act, 2023.¹ All Ontario LTC homes must integrate a palliative care philosophy that extends beyond an end-of-life model of care. The terms palliative care and end of life are often used interchangeably, however, there is an important distinction between the two terms. The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness.” End-of-life care is part of a palliative approach that is provided to people nearing the end of life, often within the final 6 months of life.²

Dementia is not a normal part of aging, but it is one of the major causes of disability and dependency among older adults.^3,4 Further, dementia is a life-limiting disease, and it is imperative that health care providers recognize changes in disease progression to meet resident and family care needs.^4,5 In Ontario LTC homes, about 90% of residents have some form of cognitive impairment⁶ and require around-the-clock care by a interdisciplinary skilled and knowledgeable care team. Palliative care programs are one of the services provided in LTC homes, however, a diagnosis of dementia may not be sufficient to receive palliative care services. The end-of-life palliative approach to care is inadequate to meet residents needs in LTC settings.^7-9 Providing palliative care for residents with dementia is complex and encompasses caring for the physical, psychological, social, and spiritual needs of individuals.

According to the WHO, “palliative care improves the quality of life of patients and their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social, or spiritual.”¹⁰ In addition, palliative care encompasses a range of services delivered by an integrated interprofessional team such as, physicians, nurses, personal support workers, pharmacists and volunteers who play a crucial role in supporting patients and their families. The literature shows that access to palliative care education and resources promote the confidence of LTC staff in palliative care delivery.¹¹ Further, staff with advanced work experience and have received palliative care training demonstrate higher levels of knowledge in palliative care and end-of-life approaches.¹² Yet, little is known about how organizations will adapt modernized approaches to palliative care services in LTC for residents with dementia or what workplace factors affect knowledge uptake and integration of palliative care training and education in clinical practice.

Existing reviews related to palliative care approaches in LTC homes have focused on the implementation strategies,13 palliative care models in LTC settings,14 and staff needs in providing palliative care for people with dementia.¹⁵ We know that further research is needed to understand the uptake of palliative care interventions in LTC homes¹³ and provide more information about palliative care practices for people with advanced dementia.¹² To date, there is no evidence of any reviews that explore what factors affect knowledge uptake and integration of palliative care training or that inform the literature about if and how palliative care education models have been validated. Kaasalainen and colleagues14 identified four types of palliative care models or programs in LTC settings and recommended that future research explore the success of these models. The findings of Bolt and colleagues¹⁵ identified that staff demonstrate interdependent needs to deliver palliative care services in LTC settings, however, there is a lack of organizational support available to meet these needs. As such, there is a muddling of concepts and lack of guidance to support the advancement of palliative care services provided in LTC homes. Therefore, it is imperative to examine existing approaches to palliative care education and training for staff working in LTC homes who are working directly with residents who live with a serious and life-limiting (terminal) illness, such as dementia.

The objective of this scoping review is to: (1) to provide a comprehensive picture of existing palliative care approaches for people living with dementia in LTC homes; (2) to understand current palliative care education and training programs for LTC staff; and (3) to identify gaps where future research is warranted. This information will allow LTC leaders (ie, managers, administrators) to assess the quality of palliative care training and educational programs available to staff and provide a synthesis of existing evidence that can be used by health system regulators and health/service providers. A better understanding of existing evidence will promote improved palliative and end-of-life care programs and services for LTC residents with dementia.

A scoping study was selected to address the research question as a valid structural approach of evidence to identify knowledge gaps, clarify concepts, and describe what is currently known about a specific topic.¹⁶ The findings of scoping reviews provide guidance and direction for future research and identify implications for policy or practice.¹⁷ This scoping review protocol review will use the five steps outlined by Arksey and O’Malley¹⁸ framework to guide the subsequent steps for the scoping review: (1) identifying the research question; (2) identifying relevant studies; (3) selecting the study; (4) charting the data; and (5) collating, summarizing, and reporting the results. These steps will be further refined by recommendations published by Levac and colleagues19 to advance each stage of the scoping review. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist will be followed to report findings from the scoping review.^17,20

The overarching research question for this proposed scoping review is: What is known from the existing literature about palliative care education for persons with dementia in LTC settings? Four sub-questions will help guide the scope of inquiry to consider the following context of palliative care education in LTC settings:

1. What skills and competencies do the training and education programs of palliative care for persons with dementia address?
2. What specific population and staff characteristics have been targeted by the training and education programs (eg, job titles, work experience, resident population) for persons with dementia?
3. What factors affect knowledge uptake and application of palliative care training?
4. Have the existing training and education programs of palliative care for persons with dementia in LTC settings been validated, and how?

The population, concept, and context (PCC) framework is used to define the search criteria outlined in this scoping review protocol (Table 1).

Table 1. PCC for scoping reviews

With support from a health science librarian, the authors will conduct a search of electronic databases (MEDLINE, CINAHL, and APA PsycInfo). The search will be conducted using keywords, medical subject heading (MeSH) or subject heading search terms that relate to key concepts, as well as Boolean operators “AND” and “OR.” The health science librarian will assist in optimizing the search strategy within the electronic databases. To ensure the scope of this review is as comprehensive as possible,¹⁸ the authors will conduct a web-based search of relevant grey literature (ie, professional reports, government documents). In addition, professional websites and a limited internet search using Google will be conducted. Reference lists from included studies will be hand-searched to identify articles missed in the database and reference list searches. EndNote software will be used to help manage, screen, and compile all relevant sources of evidence.^21,22 Key terms of the search are described in Table 2.

Table 2. Search strategies

The search strategy will be limited to English-language publications. The authors recognize that some publications may be excluded due to personal limitations regarding written language. The year of publication and other study design limitations will be removed during the review to enhance the search of articles and the number of eligible studies. Evidence included in the review must meet at least one of the following predefined criteria: (1) the literature must define the palliative care training and education and describe the defining features of the program; (2) outline concepts of the training and education (ie, resident care, staff confidence and competencies); and (3) report outcome measures of palliative care education and dementia care. Literature will be excluded if palliative care training and education in the LTC setting is not a central concept.

Before selecting the evidence, all titles and abstracts will be screened individually by two members of the research team (JC, AK) to determine eligibility based on the inclusion and exclusion criteria presented in this protocol. To ensure the screening criteria are equally applied, the reviewers will meet and discuss after reviewing the first 25 articles to ensure consistency and reliability of the review.¹⁹

During the second round of screening, the reviewers will independently conduct a full-text screening and group them into either an “include” or “exclude” category. Any discrepancies at the abstract screening phase will be addressed through a discussion by the reviewer (JC, AK) until a consensus is reached. At the full-text review phase, a third member of the research team (WS) will resolve any discrepancies. If an article cannot be accessed freely online, assistance from the institution’s Rapid Access to Collections by Electronic Requesting (RACER) interlibrary loan system will be sought. The original authors will also be accessed through email to request the full text, if necessary.

A data extraction form will be developed with 10% of the included sources of evidence to ensure accuracy. This approach aligns with Levac and colleagues19 recommendations to trial the data extraction from the first 10 studies to ensure that data extraction is consistent with the research questions and purpose, as well as support a consistent approach by all researchers. After thoroughly reading full-text articles, two reviewers (JC, AK) will independently extract all relevant data from the included articles. The data extraction form will include the following details: (1) author and year of publication; (2) title and publication details; (3) aims and objectives; (4) description of palliative care; (5) study design and methods; (6) sampling and participants; (7) interventions; (8) results; (9) summary of key findings and themes; (10) suggested implications; and (11) study limitations. The form will be a living document that will be updated to enable the capture of all relevant data that address the research question.

Although critical appraisal of selected evidence for scoping reviews is not mandatory, it is important to provide a methodological approach used to critique and describe the literature.^16,23 This study will adopt the five domains of the PAGER framework to advance rigor and quality of reporting^23,24: patterns, advances, gaps, evidence for practice, and research recommendations. This will help determine whether the conclusions drawn and recommendations made on palliative care training and education for persons with dementia in LTC homes were based on a rigorous method.

The strength of the scoping review process is its ability to provide a detailed description and explanation of the research topic from a body of evidence.¹⁶ Building upon Arksey and O’Malley’s¹⁸ framework, Levac and colleagues¹⁹ advocate using qualitative content analysis techniques and thematic analysis to advance the legitimacy of a scoping study. Our research team members (JC, VP, ML, and WS) have the qualitative expertise to use the thematic approach described by Braun and Clarke.²⁵ To visualize the data, we will use a combination of text and visual approaches (ie, thematic tree) to help assign meaning to the data and outline the meaning of each concept and its inter-relationship. Relevant themes will be generated to describe palliative care training and education of the LTC workforce, with a focus on persons with dementia. The PRISMA flow diagram will be adopted to capture the descriptive numerical summary and report the screening results.²⁶

Research ethics approval is not required to conduct this scoping review. The collected data and documents generated will be stored on Google Drive, an encrypted storage system.¹⁶ The proposed review results will be made accessible to the public (ie, Durham Region website) and presented at relevant international and national conferences in the field of palliative care, aging, and dementia. Open access publications of study findings in professional and peer-reviewed journals will be pursued. In addition, results will be used to provide recommendations for staff and management working in LTC settings with the goal of advancing the application of palliative care training and education to promote dementia care.

This paper constitutes the first step in a multistep research study aimed at advancing palliative care for persons with dementia living in LTC homes that can be applied across care settings for older adults. An evidence-based synthesis of palliative care training and education for persons with dementia living in LTC homes can identify knowledge gaps and provide future directions for research agendas, policy, education, and practice. Staff education in palliative care is insufficient11 to meet resident needs, and it is critical to provide staff with specialized palliative care training in dementia care to address their unique needs and complexity of care. Gaining a clearer understanding of the factors that affect knowledge uptake and integration of palliative care training can help guide policymakers and senior leaders to promote palliative care education and service delivery that are essential to strengthen the quality of care for the residents in LTC homes and their families.

Jen Calver, RPN, Phd Student¹1 • Manon Lemonde, RN, PhD² • Volletta Peters, MSW, PhD(c)¹ • Marvin Mnaymeneh, BA, MA¹ • Winnie Sun, RN, PhD¹

Affiliations:

¹Health Sciences, Ontario Tech University, Oshawa, CAN

²Education, Ontario Tech University, Oshawa, CAN

Disclosure:

Jen Calver has received a fellowship and consultant fees for previous work from WeRPN. The remaining authors have no conflict of interest to declare.

Address correspondence to:

Jen Calver, RPN, Phd Student
Email: jen.calver@ontariotechu.net

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