Aphasia partnership training: what outcomes do people with aphasia, family members and speech and language therapists expect?

Introduction

Life with aphasia affects the whole family with shorter, less frequent conversations, frustration, reduced social networks, isolation and tension in relationships. Evidence suggests communication partner training (CPT) benefits families. However, expected improvements are poorly articulated. The Aphasia Partnership Training (APT) project aimed to identify target outcomes of a new family dyad CPT programme through persons with aphasia (PWA), family member and speech and language therapist (SLT) consensus.

Method

Consensus on desired outcomes was achieved through nominal groups with 20 people with mild to severe aphasia across five groups and 10 family members of people with mild to severe aphasia across three groups, each facilitated by —two to three SLTs. Twelve CPT researchers 16 clinical SLTs with experience of CPT participated in a three-round eDelphi to gain consensus on outcomes they perceived most likely to change. Results were triangulated using a convergence coding scheme to demonstrate agreement, partial agreement, dissonance or silence amongst the three stakeholder groups.

Results

All stakeholders agreed ‘conversation’ and ‘thoughts and feelings’ were very important outcomes of APT/very likely to change (agreement). Change in ‘relationships’ was very important to family members, important to PWA and considered very likely to change by SLTs (partial agreement). Change in ‘language’ (specifically talking) was very important to PWA, but not important to family members, and SLTs were uncertain about language improvement from APT (dissonance). Each outcome construct is illustrated by specific examples generated and agreed by all stakeholder groups.

Conclusions

We should aim to achieve improvements in conversation and thoughts and feelings with CPT, consider the impact on relationships and investigate the potential for language improvement (talking) as an outcome of APT. Outcome measures can be selected based on good coverage of examples generated within these constructs, ensuring they are meaningful to PWA and family members.

WHAT THIS PAPER ADDS

What is already known on the subject We know that people with aphasia (PWA) and their family members often find it difficult to communicate together with wide-reaching consequences. We know that communication partner training (CPT) benefits families as demonstrated in two systematic reviews of 56 small studies. We also know what outcomes PWA and their families want from speech and language therapy in general, but there is little clarity in the literature about what outcomes are expected from CPT specifically.

What this paper adds to existing knowledge

This paper highlights the outcomes PWA, family members and speech and language therapists expect from a new CPT programme called Aphasia Partnership Training. These outcomes can be considered for all family dyad CPT programmes. What are the potential or actual clinical implications of this work? The outcomes identified through the stakeholder consensus presented from this study can be used to set goals and monitor the success of CPT, help PWA and family members decide whether they want to participate in a communication partner intervention, and ensure that measures used to evaluate the success of CPT interventions are meaningful to PWA and their families.