“Who decides what criteria are important to consider in exploring the outcomes of conversation approaches? A participatory health research study”

Background: One of the most devastating consequences of aphasia is the disruption to normal conversation. The Conversation Partner Programme emphasises communicative competence and life participation. Currently there is no recognised system for evaluating this intervention. Following policy imperatives for patient and public involvement, it is important to include service users in the development of evaluation criteria. However, people with aphasia are often excluded from such research and service development initiatives because of their communication disability. This study was designed to include people with aphasia and other key stakeholders as co-researchers in the development of evaluation criteria for a Conversation Partner Programme. Aims: To describe the multi-perspectival co-generation of Conversation Partner Programme evaluation criteria using a participatory research approach. Methods & Procedures: Following a pilot study, the generation and analysis of qualitative data involved a Participatory Learning and Action (PLA) approach based on the interpretive paradigm. Using purposeful sampling participants (n = 20) included: people with aphasia (n = 5); speech and language therapists (n = 5); speech and language therapy graduates and undergraduates (n = 9) and university coordinator (n = 1). Through (n = 18) individual and inter-stakeholder data generation episodes (PLA focus groups and interviews) using participatory techniques (Flexible Brainstorming, Card Sort, Direct Ranking, Seasonal Calendar), evaluation criteria were identified. The principles of thematic analysis guided the co-analysis of data with participants. Data generated in Ireland were presented to an international inter-stakeholder group at Connect, UK, for preliminary exploration of transferability of findings. Outcomes & Results: Conversation Partner Programme evaluation criteria agreed and prioritised by co-researchers in order of importance included: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations, and (5) feedback. “Shared Understanding of Structure” was ranked the most important criterion and related to the nature and number of participants, opportunities for group meetings, socialising, and stakeholder interaction. “Feedback”, the criterion ranked least important, detailed responsibilities about summarising programme experiences and sharing this information between stakeholders. Conclusions: People with aphasia and other key stakeholders were meaningfully involved in the identification of evaluation criteria for a Conversation Partner Programme. The outcomes of this collaborative work bridge the gap between policy imperatives around involvement and actual practice and will impact the design, delivery, and evaluation of the programme for all stakeholders. Findings will be of interest to professionals in this clinical area and to those exploring innovative methodologies to include marginalised service users, especially people with communication disabilities in research.