Volkmer, Anna http://orcid.org/0000-0002-4149-409X
Spector, Aimee
Swinburn, Kate
Warren, Jason D.
Beeke, Suzanne
Article History
Received: 10 February 2021
Accepted: 22 August 2021
First Online: 15 November 2021
Declarations
:
: 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 “Engaging people who have aphasia” (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.
: Not applicable.
: The authors declare that they have no competing interests.