'Like Going into a Chocolate Shop, Blindfolded': What Do People with Primary Progressive Aphasia Want from Speech and Language Therapy?

Autor/inn/en	Loizidou, Maria; Brotherhood, Emilie; Harding, Emma; Crutch, Sebastian; Warren, Jason D.; Hardy, Chris J. D.; Volkmer, Anna
Titel	'Like Going into a Chocolate Shop, Blindfolded': What Do People with Primary Progressive Aphasia Want from Speech and Language Therapy?
Quelle	In: International Journal of Language & Communication Disorders, 58 (2023) 3, S.737-755 (19 Seiten) PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1368-2822
DOI	10.1111/1460-6984.12818
Schlagwörter	Aphasia; Dementia; Intervention; Speech Therapy; Speech Language Pathology; Patients; Attitudes; Communication Disorders; Family Attitudes; Interpersonal Communication; Barriers; Adjustment (to Environment) + Suchen Sie Ihr Suchwort? Expressive Aphasie; Aphasie; Demenz; Entwicklungsproximale Sprachtherapie; Logotherapie; Patient; Attitude; Einstellung; Verhalten; Kommunikationsstörung; Interpersonale Kommunikation
Abstract	Background: Primary progressive aphasia (PPA) describes a group of language-led dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves. Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs. Methods & Procedures: A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis. Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified. Conclusions & Implications: This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person-centred approach that considers the broader needs of both the PwPPA and the people around them. This will enable service providers to deliver SLT that meets the needs of PwPPA and their families and will also inform future research in this field. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01