Introduction

In 2016, dementia was the fifth leading cause of death worldwide,1 and the palliative perspective is important throughout the whole dementia trajectory.2 As most people with dementia live their final days in a nursing home or similar,3 4 healthcare professionals play an essential role in offering quality palliative care in this context. The prevalence of dementia in nursing home residents worldwide differs by location, nation and region.5 In Norway as many as 80% of nursing home residents have dementia, and the majority has dementia in moderate to severe stages.6 Moderate to severe stages of dementia have been described as an extended and intensive palliative care phase, often characterised by a loss of independence and autonomy, and reduction in physical and cognitive functions.7 The trajectory is often unpredictable and palliative care initiation should therefore reflect need, not prognosis.8 A five-round Delphi study resulted in 57 consensus-based recommendations for optimal palliative care in dementia, of which eight are clinical.2 One of these clinical domains is symptom relief, considered one of the main aspects of palliative care.9

Pain is a common symptom among people with dementia living in nursing homes.10–13 In a recent study, van Dam et al found that 43.3% of participants with dementia had clinically relevant pain scores.10 Helvik et al state that 35.5% of their participants had clinically relevant pain on admittance to a nursing home.11 A review conducted by Corbett et al indicates that 50% of people with dementia regularly experience pain and that the prevalence of pain in nursing home patients might be higher.12 Pain in this patient group is often related to musculoskeletal, gastrointestinal and cardiac conditions, genitourinary infections, and wounds.12 Discomfort caused by pain in people with dementia can be expressed as behavioural and psychological symptoms (BPSD), such as agitation, apathy, restlessness or wandering.2 14 In Norway, the national clinical guidelines for dementia recommend that people with BPSD or other signs of discomfort should be assessed for pain as part of palliative care.15 Pain assessment is frequently compromised by cognitive impairment,16 including aspects of language and communication difficulties17 in nursing home population.

Pain can be defined as an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.18 Pain is a symptom, which is a subjective experience, as opposed to signs, which can be observed.19 20 These definitions imply that self-reported information is the most appropriate for assessing pain. This represents a challenge in the target population, who may have difficulty communicating their symptoms because of reduced cognitive function7 21—their pain may therefore go unrecognised and unmanaged.13 One recommendation is the systematic use of standardised observational tools and skills to chart pain, which can compensate for patients’ lack of verbal communication.2 15 22 23 However, nurses often rely on experience-based knowledge when interpreting signs of pain, and less-experienced nurses may fail to recognise pain in people with dementia.24 Moreover, Pautex et al argue that the routine use of observational scales in severe dementia may not be justified and that self-assessment can be reliably performed among this population.25 Achterberg et al highlight how self-reporting can also be adapted to individual capabilities during the course of dementia.13 They recommend an initial use of simple numerical or verbal scales and the later use of ‘yes’ or ‘no’ questions; when cognitive and linguistic impairments reach a certain level, an observational tool can be added to the self-report to strengthen the validity of the pain assessment.

Pain management requires continuous mapping, assessment and treatment evaluation.19 When caring for people with dementia this is complex and challenging.26–28 It relies on healthcare professionals’ knowledge of individuals’ normal level of functioning and communication methods.26 29 Healthcare professionals providing individualised care in nursing homes may be in a unique position to support and help people with dementia communicate their subjective experience of pain, if they have knowledge of and frequent contact with the residents.26 29

Healthcare professionals in nursing homes need tools to systematically manage pain in people with dementia, which consider individual variation in pain expressions and ability to self-report. The proposed scoping review is the first step in developing a care model for systematic pain assessment in people with dementia living in nursing homes, which also includes how healthcare professionals recognise pain and evaluate initiated measures. The development of this model is rooted in the initial steps of The UK Medical Research Council (MRC) framework for developing and evaluating complex interventions.30 To promote sustainable research and reduce research waste, it is important to obtain a preliminary overview of the field of research.31 To the best of our knowledge, no study has reviewed the literature on self-reporting in pain assessment processes in people with dementia living in nursing homes, and how healthcare professionals can integrate self-reporting in recognising, assessing and evaluating pain in this group and context. The aim of this scoping review is therefore to identify, categorise and summarise knowledge about these processes from the literature.

Methods and analysis

The proposed scoping review will follow Arksey and O’Malley’s six-stage methodological framework32 and Levac et al’s recommendations for each stage.33 This will facilitate examination of the research concerning pain assessment in the target population and the identification of knowledge gaps. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P)34 and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklists35 were used to prepare this protocol (online supplemental files 1; 2). PRISMA-ScR35 will be used in the review. The scoping review will be carried out in the period March 2022–September 2023.

Stage 1: identify the research question(s)

Levac et al33 highlight that research questions as comprehensive and broad as those recommended by Arksey and O’Malley32 may lack the direction, clarity and focus needed to inform later steps in the research process. The concept and target population have therefore been defined to clarify the scoping review’s focus and establish an effective search strategy, combined with a clear objective.33 A population, concept, context (PCC) framework has informed the research questions (table 1) and will guide the database searches and eligibility criteria.

Table 1

Population, concept, context framework informing research questions and search strategy

The following preliminary research questions were developed:

How do healthcare professionals recognise and assess pain in people with dementia living in nursing homes?

How are the assessment processes of self-reported pain in the target group described?

In accordance with Arksey and O’Malley, these may be adjusted as the review progresses.

Stage 2: identify relevant studies

The research questions and key concepts will inform the search strategy. The CINAHL, Embase, Medline and PsycInfo databases will be searched to identify relevant studies. The databases have been selected to cover a comprehensive range of healthcare research. A search strategy will be developed for each database with the assistance of an experienced librarian; these strategies will include medical subject headings (MESH), and search terms and synonyms combined using Boolean operators. The search strategy will consist of three main blocks informed by the PCC framework (table 1): people with dementia (population), pain assessment processes (concept of interest) and nursing home (context). The different search terms in each block will be combined with OR, and the blocks will be combined with AND. The reference lists of included studies will be manually searched. In line with Arksey and O’Malley, the search process will be iterative, and search terms may be adapted as the research team gains familiarity with the literature.32 A pilot search will be conducted, where the first ~80 references will be reviewed; the search strategy will be adjusted if needed. A preliminary search was conducted on 11/2/22 (online supplemental file 3).

Stage 3: select studies

Following Arksey and O’Malley, the scoping review will identify all relevant literature regardless of study design, to obtain a broad picture of the existing research on the chosen topic.32 Similarly, no time limit for publication will be specified. The inclusion and exclusion criteria are presented below (table 2)—these may be revised as the study progresses,32 and any revised criteria will be applied to all citations. The selection process will be documented in a PRISMA-flowchart36 (figure 1), including reasons for exclusion.34 Duplicates will be removed using endnote and the duplicates not detected by endnote will be removed manually as the abstracts are reviewed. If the relevance of a study is unclear from the title and abstract, the full article will be reviewed. Traditionally, scoping reviews do not include secondary research, such as literature reviews. However, literature reviews will be included; as interventions targeting pain management in people with dementia may have been developed based on literature reviews, it would be inappropriate to exclude articles that could help answer the research questions.

Table 2

Preliminary eligibility criteria guiding study selection

Figure 1

Overview of study selection process using PRISMA flow diagram.36 *Consider, if feasible to do so, reporting the number of records identified from each database or register searched (rather than the total number across all databases/registers). **If automation tools were used, indicate how many records were excluded by a human and how many were excluded by automation tools.

Study selection will begin with a review of the title and abstract. If these correspond to the research questions and aim, a full-text review will be conducted. The studies will be reviewed by at least two researchers; in line with Levac et al, the research team will meet to discuss study inclusion and exclusion decisions in the beginning, middle and final stages of the abstract review process, and refine the search strategy as needed.33 At least two reviewers will independently review full-text articles for inclusion; if disagreement arises, an additional reviewer will be consulted to determine final inclusion.

Levac et al argue that identifying gaps in the existing literature without assessing the quality of the included studies may lead to false conclusions about the nature and extent of those gaps; they also assert that quality assessment of the included studies will increase the likelihood that findings will be useful for practice.33 Study quality will therefore be assessed using appropriate appraisal tools, for example, the Critical Appraisal Skills Programme (CASP)37 and Mixed Methods Appraisal Tool (MMAT).38 An additional researcher will be included in the decision making if disagreement or uncertainty arises around the quality assessment.

Stage 4: charting data

This stage involves ‘charting’ key items of information obtained from the included studies by sorting material according to relevant issues and themes. In the proposed scoping review, this will be a mixture of general and specific information relating to study design and relevant findings. The charting process is also considered an iterative process, which means that the researchers may continuously update the data-charting form. In line with Levac et al, two researchers will independently extract data from the first five studies using the data-charting form and determine together whether the approach is consistent with the research questions and aim.33 A preliminary data-charting form has been developed based on Arksey and O’Malley’s template (Box 1).32 Ethical mapping is included in the data-charting form, in response to Weingarten et al’s emphasis on increasing ethical awareness in reviews.39 Articles that do not adhere to ethical standards will be excluded.

Box 1 Data-charting form

Author, date and country

Study title

Aim, objective and/or research questions

Ethical assessment (financial support, conflicts of interest, informed consent, research committee approval, data protection)

Study context

Participant characteristics

Sampling method

Design and methods

Relevant findings

Stage 5: collate, summarise and report results

As Arksey and O’Malley point out, unlike systematic reviews, scoping reviews do not synthesise evidence but instead provide an overview of the reviewed material.32 In this stage, an overview and summary of the extracted information will therefore be prepared and presented, following the PAGER framework,40 which consists of five categories: patterns, advances, gaps, evidence for practice and research recommendations. Patterns, or key themes, will be formed by using thematic analysis41 of key findings from each study included in the review. We will then create an overview of advances, gaps, evidence for practice and research recommendations associated with each pattern.40 The advances, gaps and research recommendations will guide further research needed to develop the pain assessment model, and the evidence for practice will guide the content of the model. Throughout the process, there will be regular meetings of the research group to discuss and agree on aspects of the analytical process and how the findings should best be presented.

Stage 6: consult with reference group

This scoping review is the first step in developing a care model for systematic pain assessment in people with dementia living in nursing homes. Correspondingly, a reference group will be formed, consisting of nursing home residents, relatives, healthcare professionals and nursing home managers. Arksey and O’Malley recommend consulting with practitioners and consumers to validate findings and make the research more useful for practice.32 The findings will therefore be presented to and discussed with the reference group. In addition, the research team is part of a larger group of researchers, with whom the findings will also be discussed.

Patient and public involvement

The proposed scoping review’s research questions and aim will be presented to and discussed with the reference group, as will the findings. These latter will support the development of an intervention promoting systematic pain management for people with dementia living in nursing homes.

Ethics and dissemination

As the scoping review will not involve the collection of primary empirical data, ethical approval is unnecessary.42 However, following Weingarten et al,39 who state that ethical assessments of included studies should be conducted, ethical considerations are included in the data-charting process. Studies that do not adhere to ethical standards will be excluded. Findings from the scoping review will be published in an open-access, peer-reviewed journal. The scoping review is an important step in developing a pain assessment model for people with dementia living in nursing homes. Findings will enable the identification of existing models or interventions that may be further developed and tailored to the nursing home context, preventing research waste.31