{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T21:55:39Z","timestamp":1790200539723,"version":"4.1.0"},"reference-count":56,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2021,11,15]],"date-time":"2021-11-15T00:00:00Z","timestamp":1636934400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2021,11,15]],"date-time":"2021-11-15T00:00:00Z","timestamp":1636934400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Geriatr"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Primary progressive aphasia is a language-led dementia resulting in a gradual dissolution of language. Primary progressive aphasia has a significant psychosocial impact on both the person and their families. Speech and language therapy is one of the only available management options, and communication partner training interventions offer a practical approach to identify strategies to support conversation. The aim of this study was to define and refine a manual and an online training resource for speech and language therapists to deliver communication partner training to people with primary progressive aphasia and their communication partners called Better Conversations with primary progressive aphasia.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The Better Conversations with primary progressive aphasia manual and training program were developed using the Medical Research Council framework for developing complex interventions. The six-stage development process included 1. Exploratory review of existing literature including principles of applied Conversation Analysis, behaviour change theory and frameworks for chronic disease self-management, 2. Consultation and co-production over 12 meetings with the project steering group comprising representatives from key stakeholder groups, 3. Development of an initial draft, 4. Survey feedback followed by a consensus meeting using the Nominal Group Techniques with a group of speech and language therapists, 5. Two focus groups to gather opinions from people with PPA and their families were recorded, transcribed and Thematic Analysis used to examine the data, 6. Refinement.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Co-production of the Better Conversations with primary progressive aphasia resulted in seven online training modules, and a manual describing four communication partner training intervention sessions with accompanying handouts. Eight important components of communication partner training were identified in the aggregation process of the Nominal Group Technique undertaken with 36 speech and language therapists, including use of video feedback to focus on strengths as well as areas of conversation breakdown. Analysis of the focus groups held with six people with primary progressive aphasia and seven family members identified three themes 1) Timing of intervention, 2) Speech and language therapists\u2019 understanding of types of dementia, and 3) Knowing what helps. These data informed refinements to the manual including additional practice activities and useful strategies for the future.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Using the Medical Research Council framework to develop an intervention that is underpinned by a theoretical rationale of how communication partner training causes change allows for the key intervention components to be strengthened. Co-production of the manual and training materials ensures the intervention will meet the needs of people with primary progressive aphasia and their communication partners. Gathering further data from speech and language therapists and people living with primary progressive aphasia and their families to refine the manual and the training materials enhances the feasibility of delivering this in preparation for a phase II NHS-based randomised controlled pilot-feasibility study, currently underway.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12877-021-02561-8","type":"journal-article","created":{"date-parts":[[2021,11,15]],"date-time":"2021-11-15T12:03:01Z","timestamp":1636977781000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":25,"title":["Using the Medical Research Council framework and public involvement in the development of a communication partner training intervention for people with primary progressive aphasia (PPA): Better Conversations with PPA"],"prefix":"10.1186","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4149-409X","authenticated-orcid":false,"given":"Anna","family":"Volkmer","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aimee","family":"Spector","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Swinburn","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason D.","family":"Warren","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"Beeke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,11,15]]},"reference":[{"key":"2561_CR1","volume-title":"Dementia factsheet","author":"World Health Organisation","year":"2019","unstructured":"World Health Organisation. 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BMJ Open. 2018;8(7):e017124. https:\/\/doi.org\/10.1136\/bmjopen-2017-017124.","journal-title":"BMJ Open"}],"container-title":["BMC Geriatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12877-021-02561-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12877-021-02561-8\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12877-021-02561-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,11,15]],"date-time":"2021-11-15T12:03:25Z","timestamp":1636977805000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcgeriatr.biomedcentral.com\/articles\/10.1186\/s12877-021-02561-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,11,15]]},"references-count":56,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["2561"],"URL":"https:\/\/doi.org\/10.1186\/s12877-021-02561-8","relation":{},"ISSN":["1471-2318"],"issn-type":[{"value":"1471-2318","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,11,15]]},"assertion":[{"value":"10 February 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 August 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 November 2021","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All work undertaken in this study was was conducted in accordance with the Declaration of Helsinki.<i>Consultation and co-production work (Stage 2):<\/i> Ethical approval is not required when involving individuals in the planning or design of research, for example when they are members of a research steering or advisory group (Health Research Authority, 2019). In order to equalize participation and power issues specific strategies were used in and outside of the steering group meetings. All communication, written and spoken, was made accessible to ensure no individuals were disadvantaged. All steering group members were required to use the same methods to contribute (raising a card to indicate they had a question or comment). People with communication difficulties were invited to contribute before others, and the author made contact with individuals with communication difficulties prior to the meeting to gather initial thoughts, to support facilitation during group discussions.<i>Consensus work with<\/i> speech and language therapists <i>(Stage 4):<\/i> The UCL Research Ethics Committee confirmed the Nominal Group Technique consensus work (Stage 4) with speech and language therapist participants to be service evaluation. Participants were informed that all responses would be anonymous and at the start of the event they provided written informed consent to participate.<i>Focus groups with people with PPA and their families (Stage 5)<\/i>: Camden and Kings Cross Research Ethics Committee (IRAS ID: 202353, Rec Ref: 17\/LO\/0357) approved the focus group study. Informed consent was obtained by A.V. following the current guidance from the Mental Capacity Act (Department of Health, 2005) and Royal College of Speech and Language Therapy, regarding gaining consent from people with communication difficulties. A caregiver (a friend or relative) was asked to witness the informed consent process whenever possible.Participant information sheets, consultee information sheets, consent forms and consultee declaration forms were designed to be accessible to support the process of gaining informed consent. They were designed using a resource for researchers in communication disability \u201cEngaging people who have aphasia\u201d (Pearl, 2014) and modified with advice from the project steering group. Transcriptions of focus group data were anonymised via the allocation to each participant of a unique research number, used at all times. All names, places and personal information mentioned in the discussions were pseudonymised.The addition of video recordings demonstrating delivery of the intervention had ethical implications, requiring a minor amendment to HRA ethical approval. Having received this approval, a separate dyad were recruited through an email advert to members of the PPA branch of the UCL Rare Dementia Support Group. During the consent process it was made clear to the dyad there would be a risk that their faces and voices may be recognized from their video recordings. Information was provided regarding the course registration process and expected registrants, such as health professionals and people with PPA and their families. After consenting to participate, the dyad made four pre-intervention video recordings of their conversations, and received BCPPA therapy from the author, an experienced speech and language therapist. All four therapy sessions were video recorded. The author then identified a selection of short video clips that illustrated key components of the intervention such as the process of supporting dyads to identify barriers and facilitators in their conversation sample, goal setting, and discussion about planning for the future. The dyad viewed these clips prior to giving final consent for their inclusion in Module 5.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participant"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"642"}}