'I Am No Longer Anxious When I Speak': Experiences of People with Primary Progressive Aphasia Taking Part in a Biographic-Narrative Therapy (Cope PPA).

BACKGROUND

Due to communication problems, people with primary progressive aphasia (PwPPA) are often affected in their self-image and experience a reduced quality of life (QoL). Biographic-narrative therapy is an effective approach to improve QoL in post-stroke aphasia. This study describes how PwPPA experienced their participation in the biographic-narrative intervention called Cope PPA.

METHODS

The intervention comprised a combination of five individual and seven group therapy sessions as well as the use of music and art therapy elements. Inclusion criteria were a capacity to give consent and sufficient visual/auditory abilities of PwPPA. Exclusion criteria were the presence of severe depression (MADRS > 35) or severe cognitive deficits (MMST < 10). After the therapy, PwPPA and their family members took part in half-hour semi-structured interviews. Interviews were analysed according to the reflexive thematic analysis by Braun and Clarke.

RESULTS

The qualitative analysis was based on a data set of 34 interviews. A total of six themes were identified: (1) Participation required adherence; (2) Materials were considered remarkable; (3) Storytelling was conducted in an aphasia-free area; (4) Group participation created a sense of belonging; (5) Experiences encouraged self-reflection and (6) Coping is lengthy and ongoing.

CONCLUSIONS

The findings of our reflexive thematic analysis suggest that PwPPA experienced the intervention as meaningful. Some PwPPA described the effects of our intervention on their self-image. Others emphasised that coping with their condition was an ongoing process requiring continuous support.