How Dementia Caregivers Make Health Service Decisions: A Scoping Review and Implications for Grounded Theory Studies

Kristina M Kokorelias,Rachelle Ashcroft

doi:10.1177/2158244020914396

Abstract

The purpose of this study is to explore the grounded theory literature surrounding the health care decisions of dementia caregivers and to evaluate the rigor of these studies according to methodological guidelines. This scoping review was guided by Arksey and O’Malley’s scoping review framework. Articles were then evaluated against key principals of grounded theory. Results from five included articles show that while researchers label their study as grounded theory, some aspects of the methodological principles do not get adhered to. We draw lessons from these shortcomings to make recommendations for future research. Exploration of the shortcomings of grounded theory research could offer suggestions for improving the overall methodological rigor in dementia caregiving research, which may enhance the credibility of the findings. Grounded theory methodologies in dementia caregiving research could move findings from qualitative descriptions to explanations of processes, such as substitute decision-making for dementia caregivers.

Highlights

There has been a rise in the prevalence of dementia
We used scoping review methodology guided by Arksey and O’Malley (2005) to answer the following two questions: (a) What evidence has been generated from grounded theory studies that helps explain decision-making processes of caregivers of persons with dementia related to health service use?; and (b) How many grounded theory studies in the area of health service decision-making for dementia caregivers adhere to grounded theory principles? The scoping review framework has six stages: (a) identifying the research question; (b) identifying relevant studies; (c) selecting studies; (d) charting the data; (e) collating, summarizing, and reporting the results; and (f) consulting with key stakeholders, such as caregiving and grounded theory researchers (Arksey & O’Malley, 2005)
Considering the scarce research on health service decision-making from the perspective of family caregivers with dementia, and lack of grand-theories in the area, grounded theory is a justified methodology to advance the field of dementia caregiving research

Summary

Introduction

There has been a rise in the prevalence of dementia. By the year 2030, it is expected that dementia will impact 66 million individuals worldwide and subsequently increase the number of family caregivers caring for persons with dementia (Lou et al, 2015). As a result of decreasing cognitive abilities and the ability to care for themselves, persons with dementia often rely on family caregivers to assist with daily living. The process of which caregivers undergo when making health service decisions in relation to service use and the factors that influence use for persons with dementia is unclear. Qualitative literature highlighting the health care decision-making processes of family caregivers is sparse. Understanding the decisionmaking process related to health service use from the perspectives of caregivers to individuals with dementia can inform improvements to services for caregivers of persons with dementia. Suggestions for improvements to health services can inform policy and practice recommendations aimed at optimizing the access and availability of services to support caregivers and people with dementia

Objectives

Methods

Results

Discussion

Conclusion