‘To Hear and Be Heard’: The Co-Design of a Website to Support Communication Challenges Experienced by People With Parkinson's and Their Families and Friends

Abstract

Background

There is growing recognition that health research should reflect the needs and perspectives of people living with a condition and actively involve them and their families. Such involvement is particularly important in the co-design of strategies, tools and interventions intended to support everyday functioning. Although communication difficulties are common in people with Parkinson's, relatively few studies have addressed conversational challenges, and there has been limited co-design of communication interventions or supports with people with Parkinson's and their families reported in the literature.

Aims

This study aimed to identify communication supports that people with Parkinson's and their families perceive as useful for managing conversations, and to co-design and evaluate one support method.

Methods

A three-phase co-design study was conducted. In Phase 1, three people with Parkinson's and two spouses participated in six group meetings to identify priorities for communication support. In Phase 2, two people with Parkinson's and one spouse worked collaboratively with two researchers over nine meetings to co-design a communication-focused website. This was one of the supports identified in Phase 1, intended to support everyday communication between people with Parkinson's and their families and to enhance communication-related self-efficacy. In Phase 3, a questionnaire was completed by 10 people with Parkinson's and 11 family members to evaluate the website's clarity, ease of navigation and usefulness.

Results

In Phase 1, co-designers identified two preferred forms of conversational support: (i) a face-to-face conversation training programme for people with Parkinson's and their families and (ii) a website co-designed by people living with Parkinson's and their families containing practical advice about communication. The website's structure, content, layout and name (‘To hear and be heard’) were co-designed during this phase. Phase 2 focused on co-designing and refining website content, appearance and layout, including the creation of video materials. In Phase 3, questionnaire responses indicated that the website was clear, easy to navigate, useful and appealing. In the evaluation phase participants reported that the resource would be particularly valuable for people newly diagnosed with Parkinson's and their families.

Discussion

This study demonstrates the value of actively involving people with Parkinson's and their families in the co-design of communication supports. By ensuring their perspectives were central, an accessible and meaningful resource was developed to support conversations and confidence in managing communication challenges. The findings highlight the importance of including people with Parkinson's and their families in the co-creation of communication support across the care continuum.

WHAT THIS PAPER ADDS

What is already known on this subject

• Communication difficulties, particularly those affecting everyday conversation, are common in people with Parkinson's and can have a significant impact on participation and relationships. While co-design approaches are increasingly used in communication research, there has been very little work involving people with Parkinson's and their families in the co-design of communication supports, with only one published study to date addressing this gap.

What this paper adds to existing knowledge

• This study provides the first evaluation of a co-designed, web-based communication support developed collaboratively with people with Parkinson's and their family members. It demonstrates that people with Parkinson's and their families can meaningfully contribute to identifying priorities for conversation support and to designing an accessible resource that supports everyday communication and communication-related self-efficacy.

What are the potential or actual clinical implications of this work?

• The findings highlight the importance of involving people with Parkinson's and their families in the co-creation of communication supports that reflect real-world needs. Clinicians may consider recommending co-designed digital resources, such as websites, as a complement to therapy, particularly for people newly diagnosed with Parkinson's and their families.