Author: Ying Yu
Yu, Ying, 2024 Exploring a facilitator-enabled virtual iSupport for Dementia program in the Australian health and aged care context, Flinders University, College of Nursing and Health Sciences
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Background: Caring for a person living with dementia (PLWD) at home can be overwhelming. Carers of PLWD reported unmet needs in acquiring dementia care knowledge and skills, symptom management, accessing care services, and peer and emotional support. To strengthen support for carers, the World Health Organisation (WHO) has developed an iSupport for Dementia program, a psychoeducation program for carers. The program aims to improve carers’ ability to manage dementia at home and reduce their stress.
Aims: The aims of this PhD thesis were to 1) engage with stakeholders to reach the consensus on activities to be delivered by iSupport facilitators for carers of PLWD in a planned iSupport for Dementia program in Australia and 2) assess the feasibility, fidelity, and preliminary effectiveness of a facilitator-enabled virtual iSupport for Dementia program for informal carers of PLWD in a 6-month intervention period.
Methods: The study used a mixed methods research design in two phases to achieve its aims. Phase 1 applied a modified nominal group technique to reach consensus with stakeholders using survey and workshop discussion/interview methods. Phase 2 applied a 6-month internal pilot randomised controlled trial (RCT) and a qualitative descriptive study design. Quantitative data using surveys were collected at baseline and 6-month. Qualitative data from carer support group meetings were collected during the RCT, and interviews with carers, facilitators and site leaders were collected after the 6-month intervention.
Findings: In phase 1, stakeholders agreed on 16 relevant activities to be delivered by iSupport facilitators to strengthen support for carers in the iSupport program. Three themes identified from qualitative data indicated that stakeholders desire to have iSupport facilitator support at the time of dementia diagnosis, throughout the everyday dementia care journey, and during transition moments.
In phase 2, findings indicated that the study had a 10% recruitment rate and a 70% retention rate in the intervention group at the 6-month. Based on feedback during the pilot study, modifications were made to the main RCT, including providing hard copy books and phone support instead of virtual-only and modifying inclusion criteria to include carers of people with cognitive impairment. Findings show that carers were actively engaged in the program. They also recommended strategies to embed and sustain such a program after the trial. Furthermore, findings indicated that the iSupport program significantly improved the PLWD’s changed behaviours, carers' distress reactions towards changed behaviours and self-efficacy in obtaining respite in the intervention group. The hospital group showed significantly improved self-efficacy for responding to PLWD’s changed behaviour compared to the community aged care group. However, there were no significant differences in carers' QOL, quality of social support, PLWD’s QOL, and carers’ self-efficacy in controlling upsetting thoughts.
Conclusion: The engagement with stakeholders informed the project team of the facilitators’ role and relevant activities to support carers of PLWD in the program. The internal pilot RCT enabled the modification of the main trial, made the main trial feasible, and measured the preliminary effectiveness of the iSupport program. The new knowledge generated from this PhD study has implications for policy and practice development in supporting carers of PLWD in the community.
Keywords: Feasibility studies, Dementia, Quality of life, Caregivers, Self-Efficacy
Subject: Public Health thesis
Thesis type: Doctor of Philosophy
Completed: 2024
School: College of Nursing and Health Sciences
Supervisor: Prof Lily Xiao