Are we on the same page? Multiple stakeholders and service users priorities for dementia care and policy: A Delphi study

Cheng SHI, Gloria H.Y. WONG, Jacky C.P. CHOY, Kayla K.Y. WONG, Terry Y.S. LUM, Doris S.F. YU*

*Corresponding author for this work

Research output: Journal PublicationsJournal Article (refereed)peer-review

Abstract

Background

It's crucial to develop a national policy for dementia due to the growing number of persons living with the condition and the attendant impact on individuals, families, and society at large. However, there has been limited exploration of the views on long-term goals for dementia of different stakeholders involved in different aspects of service use, planning or delivery.

Objective

This study aims to examine and compare the perceived priorities of service users (i.e., people living with dementia and their family caregivers) and other multiple stakeholders for dementia care and policy.

Design

Two independent Delphi studies were conducted in Hong Kong.

Setting(s) and participants

In Delphi study 1, 75 stakeholders were recruited from public and private nursing, medical and social care providers, philanthropic organizations, policy-makers and government sectors. In Delphi study 2, 45 people living with dementia and 55 family caregivers were recruited from community care settings.

Methods

The Delphi study 1 was conducted using online surveys, while the Delphi study 2 was conducted using phone interviews. Each Delphi study comprised a qualitative study for exploring the range of views of the two panels and a quantitative validation for generating consensus. We systematically compared the two panels' identified priorities in terms of contents and consensus levels.

Results

Multiple stakeholders identified 32 consensus-based statements and service users identified 25 statements, most of which achieved moderate to high level of consensus. Through content analysis, statements from the two panels were converged into six common themes: (1) early prevention, detection and referral systems for dementia, (2) care and intervention services, (3) health and social care workforce capacity building within and across service sectors, (4) supportive services for family caregivers, (5) development of longer-term dementia service planning and a policy framework, and (6) promotion of a dementia-friendly community. Despite the similarity of the themes expressed by the two panels, critical comparison of their priorities identified the dementia service and policy gaps in providing integrated and informed healthcare, a mechanism for sensitive care allocation, enabling seamless social inclusion, and proactive health orientation of dementia caregivers.

Conclusions

Discrepancies between two panels reflect the distinctive value of service user engagement in the policy-making process. Our findings have implications for developing a multi-disciplinary integrated action plan for the local health response across the primary and secondary care settings to dementia and expanding the practice scope of person-centered dementia care in a collaborative way.

Original languageEnglish
Article number104300
Number of pages10
JournalInternational Journal of Nursing Studies
Volume133
Early online date28 May 2022
DOIs
Publication statusPublished - Sep 2022
Externally publishedYes

Bibliographical note

Funding:
This study was supported by the Research Impact Fund (RIF) of the Research Grants Council (RGC) in Hong Kong (Reference No.: R7017-18). The sponsor did not participate in study design, data collection, analysis, drafting the manuscript, or the decision to publish.

Acknowledgments:
We thank all participants for sharing their insights with us. We also thank the care providers who helped with the recruitment process.

Copyright © 2022 Elsevier Ltd. All rights reserved.

Keywords

  • Delphi study
  • Dementia care
  • Health care policy
  • Integrated care model
  • Nursing
  • Person-centered care
  • Policy priority

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