Experiences and perceptions of health care professionals making treatment decisions for older adults with memory loss: a qualitative systematic review protocol : JBI Evidence Synthesis

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Experiences and perceptions of health care professionals making treatment decisions for older adults with memory loss: a qualitative systematic review protocol

Shapkin, Kimberly1,2,3; MacKinnon, Karen1,2; Sangster-Gormley, Esther1; Newton, Lorelei1,2; Holroyd-Leduc, Jayna4

Author Information
doi: 10.11124/JBIES-21-00356
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Health care professionals, including nurses, physicians, rehabilitation and allied health professionals, are increasingly caring for older adults with memory loss and coexisting health conditions, such as heart disease, cancer, or pulmonary disorders.1,2 Older adults, referred to as people over 65 years of age, access health care professionals when they need care or treatment for new health problems or for the management of coexisting health conditions.1,2 When older adults have memory loss, they have a higher rate of accessing health care professionals than those without memory changes.1-3

Memory loss associated with advancing age and underlying changes to the brain is manifested in conditions such as mild cognitive impairment, Alzheimer's disease, and mixed dementia.4,5 Memory loss affects older adults’ independent decision-making, thus changing how they participate in selecting and managing treatment choices.6-8 When this occurs, family members or friends assist, support, or augment treatment decisions based on health care professionals’ recommendations or, in the case of advanced changes to the brain, they act as substitute decision-makers.9-11

Treatment decisions made by health care professionals are needed when older adults experience new health problems, such as an injury secondary to a fall, or require management of coexisting conditions, such as hypertension.12,13 In addition, treatment decision-making may result from or be affected by a person's advanced care planning choices.14 Actions associated with treatment decisions include initiating, supporting, modifying, or discontinuing care modalities or treatments.11 Health care professionals’ decisions result in treatment recommendations, thus creating choices for the people affected.

Ideally, recommendations resulting from the decisions of health care professionals are communicated by shared decision-making strategies to support older adults living with memory loss as well as their families.15-17 To achieve shared treatment decisions, health care professionals use their knowledge of health conditions and previous experiences to translate information for patients and families while exploring their preferences and risk tolerances.11,16 However, the practical application of effective treatment decision-making is difficult for health care professionals to achieve when older adults’ memory loss affects their ability for independent decision-making.6,11,17,18

When older adults with memory loss present for care and treatment, studies have shown health care professionals believe most people will have a limited understanding of the treatments and the associated risks and benefits.3,6,7,9 Consequently, these beliefs influence the treatment decisions and subsequent recommendations of health care professionals.3 When this occurs, people with memory loss are at risk of increased adverse health events and higher morbidity than those without memory loss15,17,19,20 Further to these challenges, family members report that health care professionals do not provide details of the presenting health concern within the context of dementia.13,15,21 Families believe they experience conflict with treatment choices because health care professionals do not provide balanced treatment recommendations, resulting in a lack of understanding and frustration.13,15,21

A preliminary search of PROSPERO, CINAHL, MEDLINE, the Cochrane Database of Systematic Reviews, and JBI Evidence Synthesis was conducted in April 2022 to identify similar reviews. The search identified 2 qualitative systematic reviews evaluating the experiences, challenges, and barriers to decision-making from the perspective of the person with dementia and the substitute decision-maker.18,22 A mixed methods systematic review considered the experiences of people with dementia and their family decision-maker in cancer treatment decisions.15 Finally, a scoping review summarized the evidence on the process of treatment decision-making and factors influencing treatment decisions in acute care for people with dementia.11

Although the experiences of people with memory loss and their families or substitute decision-makers have been studied extensively, existing reviews have not focused on the experiences and perceptions of health care professionals. Therefore, it is important to synthesize the evidence to understand the experiences and perceptions of health care professionals when treating older adults with memory loss.

We believe the knowledge gained from this review will influence the treatment decision-making practices of health care professionals and support the ultimate goal of improving the experience of people most affected by those decisions. The objective of this systematic review is to appraise and synthesize the evidence on experiences and perceptions of health care professionals when making treatment decisions that result in recommendations for older adults with memory loss who are experiencing health problems.

Review question

What are the experiences and perceptions of health care professionals when making treatment decisions for older adults with memory loss who are experiencing health problems?

Inclusion criteria


This review will consider studies on health care professionals, including but not limited to, registered paid professionals such as nurses, physicians, social workers, and rehabilitation professionals, working with older adults with memory loss and health problems, regardless of clinical setting or disease progression or severity. We will exclude health care professionals who are not directly involved in treatment decision-making, such as health care administrators and unregulated health care professionals, such as students, personal care assistants, and unpaid caregivers.

Phenomena of interest

We are interested in the experiences and perceptions, including attitudes, beliefs, knowledge, and expectations, of health care professionals associated with treatment decisions when older adults with memory loss experience health problems. The phenomena of interest guiding this review is health care professionals’ treatment decision-making, which occurs when there is a need to initiate, support, modify, or discontinue treatments or care modalities resulting from a health problem.11 Health problems necessitating treatment decisions may include, but are not limited to, an acute concern like a hip fracture or myocardial infarction, a coexisting condition such as cancer or cardiac disease, or a change in condition resulting in the utilization of an advanced directive.12,14,17,23

This study will focus on health care professionals who are making treatment decisions for older adults, identified as people over 65 years of age, who are living with memory loss associated with advancing age and underlying changes to the brain. These conditions may include, but are not limited to, mild cognitive impairment, Alzheimer's disease, and mixed dementia.4,5 Memory loss secondary to developmental disorders, such as autism, or diagnoses such as delirium or depression, will be excluded.

Conditions causing memory loss alter people's ability to participate independently in decision-making. When older adults are living with memory loss, family members or friends may assist with decision-making and, over time, they may act as substitute decision-makers. Therefore, studies describing the experiences and perceptions of health care professionals, supportive decision-makers or substitute decision-makers for people with memory loss will be considered for this review.


Older adults with memory loss access care in diverse clinical settings, such as hospitals, ambulatory care, community clinics, home care, rehabilitative care, assisted living residences, or long-term care. Therefore, it is anticipated that treatment decision-making may be reported in the findings of studies conducted in any of these institutional or community locations.

Types of studies

We will consider studies focusing on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, and feminist research. Descriptive qualitative studies that enhance the understanding of health care professionals’ experiences and perceptions will also be considered. Mixed methods studies will be evaluated to determine whether qualitative findings and illustrations can be extracted. Epidemiologic studies, non-research articles, and editorials will not be considered as these fall outside the scope of this review.


This proposed systematic review has been registered in PROSPERO (CRD42021271485) and will be conducted in accordance with the JBI method for systematic reviews of qualitative evidence.24

Search strategy

The search strategy will aim to find published and unpublished studies. An initial limited search of CINAHL, Health Source: Nursing Academic Edition (EBSCO), and MEDLINE (EBSCO) was undertaken, followed by an analysis of the text words in the titles and abstracts, and of the index terms used to describe the articles. A full search strategy for CINAHL (EBSCO) is included (see Appendix I). This search strategy will be adapted and tailored for each information source. The reference lists of all studies selected for critical appraisal will be screened for additional studies. If we identify any relevant abstracts where the full report is not available, we will attempt to contact the author for further information before excluding the study.

The databases to be searched include CINAHL, MEDLINE, PsycINFO (EBSCO), and Scopus. We will also search ProQuest Dissertations and Theses and relevant websites, such as The Gerontological Society of America or Alzheimer's Disease International, using key terms for studies meeting the inclusion criteria.25,26 The search will not be limited by date and we will go back as far as the databases allow to capture existing qualitative studies meeting the inclusion criteria. This will create the opportunity for an exhaustive search of the evidence.

In the final report, we will include studies published in English that meet the inclusion criteria. If possible, we will translate the title and abstract of studies found in languages other than English, using Google Translate, to understand the depth of evidence available. The number of studies in languages other than English will be tallied and included in the final report to illustrate the availability of evidence from diverse cultural and international perspectives. However, data from non-English studies will be excluded due to a lack of resources for accurate translation, as the meaning of qualitative data are at risk of being lost in translation.27

Study selection

Following the search, all identified citations will be collated and uploaded into a citation management system EndNote v.x9 (Clarivate Analytics, PA, USA) and duplicates will be removed. The remaining citations will be imported into Covidence (Veritas Health Innovation, Melbourne, Australia) for screening. An initial pilot test of 10 studies will be conducted to screen the titles and abstracts for assessment against the inclusion criteria. Once the review team achieves a common understanding, all studies will be screened by 2 independent reviewers.

Two independent reviewers will assess the full text of the selected citations against the inclusion criteria to determine whether the text contributes to understanding the experiences and perceptions of health care professionals making treatment decisions. The results of the search and the study inclusion process will be conveyed in full in the final systematic review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.28 Following full-text screening, citation details for both included and excluded studies will be imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia).29

Assessment of methodological quality

Eligible studies will be assessed by 2 independent reviewers using the standard JBI critical appraisal checklist for qualitative research.24 Following the critical appraisal, studies not meeting the quality threshold will be excluded. To meet the quality threshold, studies must adhere to the following minimum criteria from the checklist: question 4 (congruence of research method with the representation and analysis of data) and question 8 (adequate representation of the participants and their voices).24 Any disagreements between the reviewers will be resolved through discussion or with a third reviewer. If data are missing or require clarification, we will attempt to contact the authors. We will report the results of the critical appraisal in narrative and tabular format.

Data extraction

Data will be extracted from studies by 2 independent reviewers using the standardized JBI data extraction tool.24 The data extracted will include specific details about the populations, context, culture, geographical location, study methods, and the phenomena of interest relevant to the review question. The data extracted will also include the findings and accompanying verbatim quotations, examples, or descriptions of the experiences and perceptions of health care professionals making treatment decisions for older adults with memory loss who are experiencing health problems. We will assign the findings and extracted illustrations a level of credibility. We will contact the authors of papers to request missing or additional data, where required.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI with the meta-aggregation approach.24 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings based on similarity in meaning. These categories will be subjected to a synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative format. Only unequivocal and credible findings will be included in the synthesis.

Assessing confidence in the findings

The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.30 The Summary of Findings will include the major elements of the review and detail how the ConQual score was developed. Included in the Summary of Findings will be the title, population, phenomena of interest, and context of the specific review. Each synthesized finding from the review will be presented, along with the type of research informing it, score for dependability and credibility, and the overall ConQual score.24


Dr. Carol Gordon, librarian from the University of Victoria, and Dr. Alix Hayden, librarian from the University of Calgary, for their help with developing the search strategy.

This systematic review will contribute to a doctor of philosophy in nursing from the Faculty of Graduate Studies, University of Victoria, for KS.

Appendix I: Search strategy


Searched: April 10, 2022

The database searches are a combination of keyword and controlled vocabulary terms to provide the most comprehensive coverage. For this search, the default fields, which include the Title, Abstract, and Subject headings, PubMed ID (PMID), Digital Object Identifier (DOI) and author, were utilized.



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aging; cognition disorders; decision-making; health providers; seniors

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