Examination of existing literature (Stage 1)
Existing literature comprising the bio-psychosocial model of dementia, applied CA, behaviour change theory and self-management and self-efficacy theory was examined.
Bio-psychosocial model of dementia
The bio-psychosocial model36 proposes that there are factors other than the organic causes of dementia that influence the nature and speed of deterioration in daily functioning. These include some factors that are fixed, such as PPA variant, that cannot be changed. The BCPPA manual therefore provides practice tasks, to maximise generalisation for people with svPPA, for whom this is more difficult than those with nfvPPA (insert ref to cadorio). Tractable factors, such as the way a CP interacts with a person with PPA, may be amenable to change and are directly targeted in the BCPPA intervention. Adaptive mechanisms used by the CP, such as multiple questions or test questions, may result in the person with PPA feeling incompetent37. On the other hand, the use of gesture and enactment (whole body gesture and pantomime) by a person with PPA when they are having difficulty retrieving a spoken word38 could be described as an effective coping strategy. The BCPPA intervention seeks to take account of fixed factors whilst targeting tractable factors to support the dyad (person with PPA and their CP) achieve their potential function.
Applied Conversation Analysis (CA)
CA is an approach to the study of human social interaction through the analysis of spontaneous, naturally occurring talk39. A number of CA informed stroke aphasia intervention studies and clinical resources have been developed40 such as SCA18, SPPARC41 and BCA42. These have in common the analysis of video recordings of natural conversations between the person with aphasia and their CP, and providing these as video feedback, as a foundation for targeting therapy40. The speech and language therapist (who typically delivers such an intervention) analyses 10-15 minute video-recorded interaction to identify behaviours resulting in conversational breakdown, known as barriers, and ways in which members of a dyad successfully resolve or circumvent troubles to maintain interaction, known as facilitators. The aim of video feedback is to increase awareness in one or both members of the dyad of the impact of their behaviours, and jointly agree on goals for therapy. Once the goals of therapy are agreed upon, a process of practice, through supported conversations, role play and reflection, is commonly employed40. The BCPPA intervention is informed by this well-described43, CA-underpinned approach to CPT.
Behaviour change theory
Recognising conversational barrier behaviours in video recordings of oneself and setting a goal to cease these, or adopt facilitative strategies instead, does not guarantee that a change in behaviour will occur44. Behaviour change theory, specifically the COM-B model45 accounts for an individual’s behaviour change as the product of three equally weighted components namely Capability, Opportunity and Motivation. Researchers examined video recordings of CA-underpinned CPT being delivered to people with stroke aphasia and their CPs46 and used the COM-B model45 to identify the essential change processes and the core procedures that serve them47. The BCPPA intervention incorporates the seven core mechanisms that have been identified as essential to behaviour change in a CPT46, specifically the processes to motivate change and those that embed changes (See supplementary material 4).
Self-management and self-efficacy
Central to self-management is the concept of the client as an active participant whose current status is influenced not only by diagnosis but by psychological responses and experiences. This implies interventions should address the ability to self-manage daily activities and the emotional journey, not just medical symptoms48,49. Taking action to accomplish a plan to self-manage their condition is more likely to succeed if a person has the confidence or self-efficacy to achieve it50. Self-efficacy is a mechanism that directs behaviour change, for if one feels in control of a behaviour it becomes easier to make a change to it50. Five core self-management skills and four key self-efficacy mechanisms have been highlighted for inclusion in speech and language therapist interventions with people with progressive communication difficulties49 and these have been considered in the development of the BCPPA intervention (see supplementary file 4).
Consultation and co-production work with the steering group (Stage 2)
Decisions made included:
- Identification of seven subjects to form distinct training modules within the BCPPA program. Table 1 provides an overview of the learning objectives and how these were co-produced. The three modules required for the phase II NHS based randomised controlled pilot-feasibility study (Module 3: How to make a video, Module 4: What to target in therapy and Module 5: the BCPPA therapy) were prioritised for development over the four only needed for the future general release of the online BCPPA program. Table 2 provides an overview of the content of these three modules.
- Development of a topic list, for Module 3: How to make a video, to support participants when making video recordings of their own conversations.
- Distillation of the components of the eight BCA sessions into four 1- hour BCPPA sessions (the duration agreed-upon by speech and language therapists as feasible11,12)
Table 1. Learning objectives and timeline for development of the BCPPA training modules including the therapy program
BCPPA training modules
|
Learning objectives for speech and language therapists accessing the module
|
Co-produced module components
|
Development timeline
|
|
To explain what PPA is according to:
People with PPA and their relatives who have worked on this module,
Speech and language therapists working in the area
The research literature in this area
|
Co- produced with steering group.
References selected by steering group.
|
Prior to launch of online BCPPA program
|
Module 2: What is conversation training?
|
To explain what conversation training is to clients, based on video recorded interviews with:
Speech and language therapists working in the area
People with PPA and their relatives who have worked on this module.
|
Co- produced with steering group
Video clips planned, filmed and selected by steering group
|
Prior to launch of online BCPPA program
|
Module 3: How to make a video
|
• To have an appropriate tool available to gain consent for the purpose of videoing of a couple in conversation with one another to be used in the conversation training intervention, BCPPA.
• To be aware of the Mental Capacity Act (2005) and how this will impact on consent.
• For speech and language therapists to be supported to make and store videos, in line with the data management guidance and policies of their local organisation, of conversation between a client and their conversation partner for the purpose of the BCPPA intervention.
• To be able to set up an optimal environment for the purposes of making a video for the BCPPA intervention
|
Co-produced work with the steering group included: a topic sheet to support participants in identifying what to discuss during video recording, example consent forms, video samples and formatting of module.
|
Prior to Phase II RCT Feasibility Pilot Study
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Module 4: What to target in therapy
|
To understand the three stages of the goal setting process:
1) Identification of facilitators and barriers from pre-therapy videos
2) Selection of suitable video clips of appropriate length and focus to show clients, and
3) Negotiation of goals with a person with PPA and their conversation partner
|
Co- produced work with people with PPA included: video samples and formatting of module.
|
Prior to Phase II RCT Feasibility Pilot Study
|
|
To deliver the four synchronous BCPPA therapy sessions, supporting people with PPA and their communication partners (as a dyad) to:
- Understand concept of barriers and facilitators in conversation and consider thesis briefly in relation to their own conversation
- Identify barriers and facilitators in their own conversation
- Set goals for therapy based on this discussion
- Practice conversation using the strategies identified during goal setting
- Problem solve any issues that have arisen in using identified strategies in conversations outside of therapy sessions
- Consider planning for future changes in communication
|
Co- produced work with steering group included: Therapy handouts for sessions 1 and 4, therapy activities for session 3, video samples and formatting of module.
|
Prior to Phase II RCT Feasibility Pilot Study
|
|
• To consider what options are available for measuring outcomes for BCPPA;
• To think about the pros and cons of different outcome measures;
• To consider how to use outcome measures in clinical practice.
|
Co-produced with speech and language therapists working with people with PPA (local collaborators who participated in the Phase II RCT Feasibility Study)
|
Prior to launch of online BCPPA program
|
Module 7: Useful Resources
|
• To learn about some activities people with PPA enjoy;
• To find out about some useful websites and resources;
• To have thought about what has been useful in your therapy.
|
Co-produced with steering group
Online resources selected by steering group
|
Prior to launch of online BCPPA program
|
NB: The language used for module titles and learning objectives reflects vocabulary selected by the steering group during co-production and was felt appropriate and accessible for the target audience (clinical speech and language therapists).
Table 2. Overview of content for the first draft of the BCPPA manual (Modules 3, 4 & 5).
Module
|
Overview of content
|
Module 3: How to make a video
|
Discussion of barriers to using consent forms
Activity for user to identify local policy re consent
Practical task to evaluate the accessibility of a consent form
Provision of an example consent form
Basic overview of key aspects of the MCA (2005) and the MCA Code of Practice (2007)
Tips on creating accessible information and practical exercise to create a consent form
Overview of functional capacity assessment from the MCA (2005) and case study of how to gain consent
Common barriers to making videos in clinical practice
Practical task to overcome barriers
Tips on making a good quality video- using video samples
Practical tasks on what to consider when making a good video- using video samples
Tips and ideas to choose the topic of conversation for video recording
|
Module 4: What to target in therapy
|
An overview of what facilitators and barriers are
Examples of facilitators and barriers in conversations between a person with PPA and their partners
Video examples of PwPPA and their CPs and the barriers and facilitators that may arise and practical exercise to identify these
Tips on how to link barriers and facilitators to what to work on in therapy
Practical tasks on selecting and presenting the video clips to show PwPPA and their families
Things to consider when setting a goal
Practical tasks using example goals from therapists who have shared real goals that they set for people in therapy
|
Module 5: BCPPA therapy
|
Prompt / reminder to look at Modules 3 &4
Sessions 1: provision of aims, sessions plan, therapy handouts and home-based tasks for PwPPA and CP
Session 2: provision of aims, session plan, therapy handouts and home-based tasks for PwPPA and CP.
Session 3: provision of aims, session plan, therapy handouts and home-based tasks for PwPPA and CP.
Session 4: provision of aims, session plan, therapy handouts and home-based tasks for PwPPA and CP.
|
First draft of BCPPA manual (Stage 3)
Module 5: the BCPPA therapy, hosted the BCPPA manual comprising session plans, session handouts and home-based tasks for each of the four BCPPA intervention sessions. The session plans identified intervention components as either core or non-essential components that can be tailored to an individual’s needs.
The draft manual was evaluated by the steering group to ensure information was presented in an accessible way. This included decisions on images and formatting.
The first draft of the manual was uploaded to a secure area on the UCLeXtend website and made available to speech and language therapists participating in the stage 4 consensus work via a bespoke URL. It was not publicly accessible.
Consensus work (Nominal Group Technique) with speech and language therapists (Stage 4)
Demographics and characteristics of speech and language therapist participants
Thirty-six speech and language therapists took part. Of these, 17 had completed the pre- NGT meeting survey, 22 had viewed the first draft of the BCPPA manual and training program prior to attending, and two had been able to use the BCPPA manual with a client with PPA. Table 3 presents speech and language therapist participant demographics and their familiarity with the BCPPA manual and training program. Following the meeting, 20 of the 36 participants completed the final NGT ranking task by email.
Table 3: Demographics of SLTs who participated in the NGT meeting and their familiarity with the BCPPA program
|
SLT participants (n=36)
|
Gender (m:f)
|
2:34
|
Years practicing as an SLT (mean and range)
|
12.5 (0-21)
|
Number of clients with PPA seen in clinical career (mean and range)
|
9 (0-20)
|
BCPPA modules viewed online prior to meeting:
None but knows of BCA
None
Module 3 How to make a video Module
4 What to target in therapy
Module 5 BCPPA therapy
|
1
11
22
21
22
|
m: male, f: female, SLT: speech and language therapist, PPA: primary progressive aphasia, BCA: Better Conversations with Aphasia program, BCPPA: Better Conversations with PPA program.
Pre-NGT meeting survey
When asked what surprised them when they first accessed the online BCPPA program five of 17 respondents (29%) commented on there being a lot of detail. Five respondents (29%) described the program as clear, easy to use and accessible; one person highlighted the comprehensive and detailed step by step guidance. A further four respondents (24%) stated that they were unsurprised by the BCPPA program, given their familiarity with the BCA program on which BCPPA is based. Respondents provided feedback on the BCPPA program including the most useful aspects (17, 100%, respondents), formatting (16, 94%, respondents), additions or changes (14, 82%, respondents) and the least useful aspects of the program (10, 60%, of respondents). Five themes arose from these data: 1. General usefulness; 2. Specific ‘helpful’ tasks or sections; 3. Access issues, ‘I had trouble with’; 4. ‘Could you add’; 5. ‘Not a fan’. These themes are illustrated with quotes in Figure 2. Notably, access issues were generally related to glitches in the program, though some local NHS browser systems posed restrictions.
Nominal Group Technique
After two iterations of consensus work with speech and language therapists, focused on the question “What components of the BCPPA therapy sessions are important for people with PPA and their conversation partners?”, eight components were identified, and ranked in order of importance, see Table 4.
Table 4: Final eight ranked components identified as important for the BCPPA program, from two stage NGT consensus work
1
|
Use of video feedback to identify facilitators versus barriers in conversation when focusing on people’s strengths as well as areas of potential breakdown
|
2
|
Tailored and person centred:
- goals,
- conversational topics,
- strategies
- practice opportunities
|
3
|
Emphasising a focus on getting message across rather than a perfect interaction
|
4
|
Focusing individual attention on non-verbal communication strategies such as body language, gesture, facial expression and other methods of total communication.
|
5
|
Recognising and building on current communication strengths.
|
6
|
Working with both the person with PPA and the CP together.
|
7
|
Providing opportunities to practice strategies and get feedback from the SLT.
|
8
|
Providing an opportunity to discuss their communication difficulties
|
Focus groups with people with PPA and their families (Stage 5)
Demographics of participants
Thirteen participants, six people with PPA and seven family members, responded to the advertisement. All were eligible and agreed to participate but one couple withdrew the day before the focus group due to a conflicting commitment. The remaining 11 participants attended two focus groups (NB: these were mixed groups, whereby people with PPA and their CPs attended together, alongside some CPs and people with PPA who attended independently, group 1: seven participants; group 2: four participants). Participants with PPA represented all three variants, and atypical mixed variants. Demographic information is outlined in Table 5.
Table 5: Demographic information for focus group participants
|
Person with PPA (PwPPA) and communication partner (CP)
|
PPA variant
|
Time since symptom onset
|
Time since diagnosis
|
Focus Group 1:
|
PwPPA (m) + CP (f)
PwPPA (f) + CP (m)
CP (f)
PwPPA (f) + CP (m)
|
lvPPA
Mixed
(Mixed)
nfvPPA
|
4 years,
3 years
(9 years)
5 years
|
2 years
2 years
(4 years)
4 years
|
Focus Group 2:
|
PwPPA (m)
PwPPA (f) + CP (m)
CP (m)
|
lvPPA
svPPA
(Mixed)
|
4 years,
5 years
(8 years)
|
1 year
4 years
(5 years)
|
PwPPA: person with primary progressive aphasia, CP: communication partner, lvPPA: logopenic variant primary progressive aphasia, svPPA: semantic variant primary progressive aphasia, nfvPPA: non-fluent agrammatic variant primary progressive aphasia
Themes arising from the focus groups
Three overarching themes emerged: 1) Timing of intervention, 2) speech and language therapists’ understanding of types of dementia, and 3) Knowing what helps. Theme 3 encompassed five further subthemes: ‘No one size fits all’, ‘I’ve discovered that’, ‘who’s targeted’, ‘therapy approaches’ and ‘toolkit’. All themes and subthemes are presented in relation to illustrative units of data in Figure 3.
Refinement of BCPPA manual (Stage 6)
Refinements that arose from stages 4 and 5 of intervention development were decided on in conjunction with the steering group and are presented in Table 6. The refined BCPPA program was consequently made available to participating local speech and language therapist collaborators on UCLeXtend as part of their training in preparation for delivering the intervention during the randomised controlled pilot-feasibility study. The final intervention is described in detail, using the template for Intervention Description and Replication (TiDIER), in the authors PhD thesis which this paper is based on51, and a published protocol for study which remains currently underway52. Further to this, the project steering group made plans to continue working to co-produce the remaining four modules, in anticipation of a future launch of the BCPPA program. This paper is based on work from the authors PhD thesis.
Table 6: Refinements for BCPPA manual and intervention
Decisions made
|
Examples of refinements made
|
Provide more options on strategies and practice activities in the intervention materials.
|
Addition of Home based task 2: Strategies to help turntaking and expansion of session plan 3 to include a list of 11 optional additional strategy practice ideas based on ideas collated from SLTs, people with PPA and their families and a review of manuals for stroke aphasia CPT manuals.
|
Provide more information on resources and other services.
|
Expansion of session plan 4 to include a list of resources and other services for SLTs making recommendations for the future.
|
Develop video examples of the intervention being delivered.
|
Addition of video recordings of conversation breakdown and intervention being delivered inserted to Module 5: The BCPPA therapy. These included:
Session 1:
Video examples of Keith and Rose watching videos of themselves and the SLT facilitating them to identify barriers and facilitators.
Session 2:
Video examples of Keith and Rose goal setting with the SLT.
Session 4:
Video example of Keith and the SLT discussing a difficult subject around future planning.
|
Include more testimonies from people with PPA in Module 1: What is PPA and Module 2: What is communication partner training?
|
Use of quotes to illustrate experience of communication facilitators and barriers in Module 4: What to target in therapy.
|
Provide more information on how PPA impacts on daily communication.
|
Refinement of Session 1. Handout 1. How does conversation work? And addition of Session 1. Handout 2. What can go wrong in conversations? in co- production with project steering group.
|
Provide a summary sheet including suggestions for future changes on one handout at the end of the intervention.
|
Addition of summary handout for session 4: Handout 6: Your strategies
|
BCPPA= Better Conversations with Primary Progressive Aphasia, SLT= speech and language therapist, PPA=primary progressive aphasia