"Doing the Best I Can": Qualitative Outcomes and Participant Feedback From a Combined Communication and Counselling Treatment for Primary Progressive Aphasia.

introductionThere is a growing evidence base supporting the utility of restitutive speech-language treatments for individuals with primary progressive aphasia (PPA). In contrast, there is limited research investigating treatment approaches that offer counselling to this population. Given that people with PPA are susceptible to negative impacts on their psychosocial well-being, research is needed to address this underrepresented area of inquiry. This paper provides qualitative research findings from a pilot and feasibility study in which individuals with PPA completed a novel, telehealth-based treatment program comprising both tailored speech-language treatment and counselling (via aphasia-modified cognitive behavioural therapy).

methodsNine participants with PPA (three with nonfluent/agrammatic variant; three with logopenic variant; three with semantic variant) completed the novel treatment program. A phenomenological analysis was used at pre- and post-treatment timepoints to analyse qualitative treatment outcomes and participant-derived feedback regarding the intervention.

resultsFollowing treatment, group-level themes identified across both timepoints included Communication Difficulties, Loss, Communication Strategy Usage, and Value of Support Systems. Themes identified only at pre-treatment included Negative Emotions and Social Disconnection, while those observed only at post-treatment were Acceptance, Gratitude, and Counselling and Coping Strategy Usage. Participant-generated feedback regarding the intervention resulted in themes of Positive Life Impact of Treatment, Satisfaction with Treatment Framework, and Satisfaction with Telerehabilitation.

conclusionQualitative results from this pilot study indicate positive/adaptive themes surrounding psychosocial functioning following treatment for participants with each PPA subtype. Furthermore, participant-generated feedback reflects overall satisfaction with this holistic communication and counselling-focused treatment approach, indicating treatment acceptability. WHAT THIS PAPER ADDS: What is already known on this subject People with primary progressive aphasia (PPA) often experience a negative impact on their emotional well-being and quality of life. While preliminary research indicates that these individuals may benefit from personal-adjustment counselling, research is limited pertaining to psychosocial approaches in PPA. Thus, additional research is warranted to investigate the benefit, acceptability and feasibility of these interventions. What this paper adds to existing knowledge Preliminary qualitative results provide evidence that a novel treatment approach comprising communication-focused intervention and aphasia-modified cognitive-behavioural therapy (CBT) results in positive psychosocial outcomes amongst nine individuals with heterogeneous PPA presentations. Participant-generated feedback following treatment supports the acceptability of this combined intervention. Individuals reported satisfaction with the intervention overall and recognized the value of engaging in a program that aims to optimize both communication and emotional well-being. What are the potential or actual clinical implications of this work? Speech-language therapists/pathologists may consider incorporating counselling approaches to optimize a person with PPA's emotional health and holistically meet patient needs. Aphasia-modified CBT, provided by a speech-language therapist/pathologist, requires further investigation to ultimately determine the clinical utility of this approach.