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Adaptation of iSupport, a digital intervention for carers of people with Parkinson’s and cognitive impairment Passed

Tuesday May 14, 2024 15:44 - 16:30 Poster Arena

Presenter: Maragaret Joy Milne

Track: Informal Care and Support, Posters

Poster can be found in location 15.

The problem: Most care needs of people with Parkinson’s with cognitive impairment (PwPCI) are met by informal carers. This role is often associated with reduced quality of life, and impaired physical and mental well-being. Despite their important role, there is a lack of support for carers of PwPCI. The aim of this project is to adapt a globally available digital intervention for dementia carers (iSupport) to meet the specific needs of carers of people with PwPCI (iSupport-PD). Approach/methodology: We used the Person-Based Approach (PBA) to intervention development to maximise user engagement with iSupport-PD. Insights from a rapid scoping review, preliminary interviews with carers of PwPCI (n=9), and PPI and stakeholder consultation were tabulated to identify the needs of carers of PwPCI. Key findings: Generally, carers felt that the topics of the original iSupport were relevant to them. They valued its focus on carers' own needs, not just on how to better manage symptoms. However, new content needs to be added to address the complexities of CI in Parkinson’s (e.g., causes, interacting symptoms). Some aspects of iSupport were deemed patronising and have been swapped for more empathetic design features (e.g., stories). Carers requested that terminology used promotes inclusivity, recognises ‘partnership’, and avoids suggesting that the person with Parkinson’s is ‘impaired’.  Implications: Findings informed provisional guiding principles to outline how the specific needs of carers of PwPCI will be addressed in iSupport-PD. Qualitative think-aloud interviews will iteratively optimise iSupport-PD content. This study demonstrates how the PBA can be applied to intervention adaptation.  

Language

English

Seminar type

Poster

Conference

GCPCC

Authors

Joanna Slodkowska-barabasz, Joy Milne, Andrew McCarthy, Annette Hand, Kate Greenwell

Lecturers

Profile image for Maragaret Joy Milne

Maragaret Joy Milne Presenter

Honorary Lecturer
Advocate for Parkinson's Disease

Negotiation in Person Patient Involvement - asking the questions that make
Shared Purpose, Respect, Roles and Responsibilities, Capacity and capability for engagement, Transparency in Communication and documentation, Continuity between researchers and PPI