Framework and Components for Advance Care Planning Intervention for Dementia (ACP-D): A Delphi study

Dr Leung, Yee Man Angela   (Principal Investigator (PI))

Professor Cheng Sheung-Tak   (Co-Investigator)

Dr Wong Gloria Hoi Yan   (Co-Investigator)

Dr Chau Pui Hing   (Co-Investigator)

Dr Dai David Lok Kwan   (Co-Investigator)

Professor Chan Chi-ho Wallace   (Co-Investigator)

3

2015-09-01

2015-11-30

43000

Framework and Components for Advance Care Planning Intervention for Dementia (ACP-D): A Delphi study

Advance care planning, Chinese, Delphi study, mild dementia

Social Work,Geriatrics/Gerontology

201509159019

Seed Fund for PI Research – Basic Research

2015

Completed

Background: When older adults are diagnosed as having dementia, the relatives are usually ill-prepared for the days ahead. Advance care planning (ACP) has been advocated for some years in Hong Kong; however, there is a dearth of information about its implementation. Guided by the interactive decision-making framework (Pierce & Hicks, 2001), the project team has proposed an advance care planning for dementia (ACP-D) intervention. This is a series of four 30-minute interactive sessions which allow patients with mild dementia and their caregivers to discuss the future plan of care as severity of dementia progresses. The applicability and practicability of this ACP-D is uncertain and there is a concern that caregivers’ views should have been incorporated. Objectives: This study aims to (1) solicit caregivers’ views about ACP and incorporate their views in the intervention, and refine the intervention, if necessary; (2) validate and attest the applicability and practicability of the ACP-D intervention in day care centres in Hong Kong. Method: This study consists of three components: (1) conduct individual interviews with 30 caregivers who provide direct support or care to patients with mild dementia; (2) conduct focus group interviews with 24 health practitioners who provide direct service to patients with mild dementia in Hong Kong; (3) consult a renowned researcher in John Hopkins University or Duke University who works in dementia caregiving or dementia-related intervention. Interviews with caregivers: Each interview will last for at least one hour so as to solicit their concerns about ACP in dementia, their existing resources, the resources needed and perceived capacity to involve in ACP. All interviews with caregivers will be recorded and key themes will be identified by thematic analysis. Focus group interviews with health practitioners: Each focus group interview will invite 6-8 health practitioners. Delphi method will be used to solicit consensus among these practitioners on the feasibility and practicability of the ACP-D intervention in the clinical settings. The ACP-D intervention is guided by 20 questions. Each question will be rated independently based on three aspects including clarity, validity and applicability on a 5-point Likert-scale. Questions with 75% or above of participants scoring 4-5 on all three aspects would be included in the ACP-D intervention. For those questions not reaching 75% of consensus in any one of the aspect, it will be revised or discarded following the group discussion, and be re-rated in another round. Consultation with renowned researcher: Consultation with the invited renowned professor in dementia caregiving research will be made through skype meetings and email communication. Advices and inputs will be solicited to refine the ACP-D intervention. Significance of the study: This study will contribute to the development of an interactive advance care planning intervention that meets the need of Chinese patients with mild dementia and addresses the concerns and issues of caregivers. Its applicability and practicability will be tested and this testing will give confidence to the next step of research – testing of efficacy of the ACP-D intervention in a randomized controlled trial (GRF re-submission in 2016/17).