Co-designing positive behaviour support (PBS+PLUS) training resources: a qualitative study of people with ABI, close-others, and clinicians’ experiences
Jao-Yue J. Carminati
A B , Kristian Holth A B , Jennie L. Ponsford A B and Kate Rachel Gould A B *
A
B
Abstract
Challenging behaviours are often a significant difficulty faced following acquired brain injury (ABI), for which PBS+PLUS (a Positive Behaviour Support framework) is an effective intervention. Clinicians report experiencing a range of barriers to supporting behaviour change for individuals with ABI and require tailored resources to support the implementation of PBS+PLUS. This study aimed to describe the process of co-designing a PBS+PLUS intervention guidebook and podcast series together with individuals with ABI, close-others, and clinicians, and qualitatively examine co-design experiences.
The Knowledge-To-Action Framework was followed to support the translation of PBS+PLUS into clinical practice. Participants with ABI (n = 4), close-others (n = 7), and clinicians (n = 3) participated in focus groups contributing to the development of a PBS+PLUS intervention guidebook and podcast series. Following completion of the groups, qualitative interviews were conducted to understand participants’ perspectives of the co-design experience. Transcripts were analysed using reflexive thematic analysis.
Co-design processes are described, and participants provided practical suggestions for co-design and the dissemination of developed resources. Two core themes encapsulating four sub-themes were identified. Firstly, ‘Esteeming Experiences’ described the person-driven approach of co-design whereby participants felt supported and connected with other contributors and facilitators through sharing their perspectives. Secondly, ‘Empowerment’ reflected participants’ increased confidence and skills in applying PBS+PLUS.
Overall, participants endorsed the therapeutic benefits of co-design engagement and high utility of PBS+PLUS resources. This study adds to the growing literature supporting the use of co-design methodology within clinical implementation, and is inclusive of individuals with ABI, close-others, and clinicians.
Keywords: acquired brain injury, challenging behaviour, clinical implementation, co-design, knowledge to action framework, positive behaviour support, qualitative research, translational research.
Introduction
Challenging behaviours (e.g. aggression, lack of initiation and inappropriate social behaviour) are frequent, distressing, and persistent sequalae of moderate to severe acquired brain injury (ABI). These behaviours interfere with community participation, living independently, developing and maintaining interpersonal relationships (Tateno et al. 2003; Ponsford and Schönberger 2010; Ponsford et al. 2014; Sabaz et al. 2014; Tam et al. 2015; Hammond et al. 2016; Hicks et al. 2017; Gould et al. 2019a), and impose distress and burden on family members and carers (Tam et al. 2015; Gould et al. 2019a; Hendryckx et al. 2023). Clinicians, however, report experiencing a range of barriers to supporting behaviour change for individuals with ABI, including insufficient training resources, time constraints, and low confidence (Wong et al. 2014; Carmichael et al. 2020). Clinicians have indicated a desire for further training in ABI-specific behavioural techniques via workshops and supervision, written resources that include practical examples, and low-cost and on-demand training options such as podcasts (Carmichael et al. 2020, 2021).
Positive Behaviour Support (PBS) has gained increasing support as a contemporary intervention framework for improving quality of life and behavioural self-regulation through prevention-focussed skill building, environmental modifications, and social support system enhancement (Carr et al. 2002). Over recent decades, PBS has evolved to support application within a range of community, educational and institutional settings (e.g. LaVigna and Willis 2005; LaVigna and Willis 2012; Gore et al. 2013), including adaptation of PBS to ABI (e.g. Feeney and Ylvisaker 1995, 2006). Our group has further refined and operationalised PBS to address challenging behaviours in community-dwelling adults with ABI, using a framework called PBS+PLUS (Gould et al. 2019b; Ponsford et al. 2022). The ‘PLUS’ is an acronym for the foundational principles of the approach, specifically ‘Person driven’, ‘Learning together’, ‘Uniting supports’ and ‘Skill building’ (Gould et al. 2019b). A randomised controlled trial (RCT) found PBS+PLUS was effective in reducing challenging behaviours and achieving personally meaningful goals for adults with severe ABI (Gould et al. 2019b, 2021; Ponsford et al. 2022). PBS+PLUS also improved the self-reported knowledge and self-efficacy of close-others in understanding and supporting challenging behaviours (Holth et al. 2022; Ponsford et al. 2022), and clinicians reported benefits including shifting their clinical identity, working with their clients as equals, and bringing greater humanity to their work (Analytis et al. 2021).
There is commonly a significant lag between research findings and their adoption into clinical practice (Graham et al. 2006; Goodyear-Smith et al. 2015). One means of improving translation to directly address the needs of clinicians is using a co-design approach. Co-design is an overarching approach to inclusive research and resource development rather than a single framework, and refers to collaborative efforts of developing resources together with the target population (Brereton et al. 2015; Zamenopoulos and Alexiou 2018; Slattery et al. 2020). Combining input from people with everyday experiential knowledge (people with ABI, family members, carers) with people who have expert knowledge (clinicians, researchers) results in knowledge systems which reciprocally enrich one another (Bate and Robert 2007; Gustavsson and Andersson 2019). Co-design spans several levels of consumer participation, from learn/inform (lowest level of engagement), to participate, consult, involve, collaborate, and lead (highest level of engagement; Manafò et al. 2018). The co-design process can lead to positive emotional impacts for contributors, including increased confidence and self-esteem through empowering contributors as experts (Bailey et al. 2015; Di Lorito et al. 2018; Hoepner et al. 2022). The outputs of co-design have been suggested to lead to sustainable change, translation of knowledge, improved product-user fit and acceptability (Steen et al. 2011; Gillard et al. 2012; Slattery et al. 2020), particularly within populations of varied cognitive-communication abilities (Brereton et al. 2015; Zamenopoulos and Alexiou 2018).
Despite the increased use and acknowledged importance of co-design within healthcare research and implementation projects, previous co-design projects have largely evaluated project and product outcomes, with little focus on evaluating the co-design processes that led to those outcomes, or the experiences of contributors. Within an ABI setting, projects including co-presenting at research conferences (Mäkelä et al. 2019; Layton et al. 2022) and co-designing pathways to open employment (Bould and Callaway 2021), a supported self-management intervention in an acute trauma setting (Mäkelä et al. 2019), and online cybersafety training resources (Carminati et al. 2023) have been previously evaluated. Given the variability and flexibility of co-design implementation, novel application methods continue to require evaluation to understand and address benefits and challenges (Bate and Robert 2007; Hendriks et al. 2015; Gustavsson and Andersson 2019)
Based on the stated needs of clinicians for increased training in behavioural interventions, evidence of positive impacts of PBS+PLUS, and benefits of co-design for clinical translation, a PBS+PLUS written guidebook and podcast series were collaboratively developed with clinicians, people with ABI, and close-others. This paper aimed to:
Methods
Co-design setting
This forms part of the evaluation stage of a wider program of PBS+PLUS clinical implementation and translation using the Knowledge-To-Action Framework (KTA) (Graham et al. 2006) with co-design methods applied at each translation stage, guided by strategies of co-design and inclusive research (Frankena et al. 2019; Bird et al. 2021). The KTA involves two recursive phases: firstly, Knowledge Creation, which involves researching and synthesising relevant information about the topic of interest, and secondly, the Action Cycle, which describes adapting knowledge to the specific context, identifying barriers and facilitators, and evaluating implementation. Fig. 1 illustrates the broader PBS+PLUS translation project as a simplified model of the KTA framework. In the stage of knowledge inquiry and synthesis, our team has conducted multiple quantitative and qualitative studies to explore the obstacles and facilitators to addressing challenging behaviours for people with ABI, close-others, and ABI clinicians (Hicks et al. 2017; Gould et al. 2019b; Carmichael et al. 2020, 2021). Next, the efficacy and experience of PBS+PLUS was systematically evaluated through an RCT and qualitative investigations (Analytis et al. 2021; Gould et al. 2021; Holth et al. 2022; Ponsford et al. 2022). The current study focusses on the steps of tailoring knowledge tools and products and adapting these to the local context by addressing clinicians’ previously identified needs and barriers (Wong et al. 2014; Carmichael et al. 2020, 2021; Analytis et al. 2021) and co-designing an intervention guidebook and podcast series. Two inclusive co-design research guides (Frankena et al. 2019; Bird et al. 2021) were used to flexibly direct the co-design process and support strategies (e.g. project pre-planning, strategies to scaffold focus group discussion). Contributors reviewed documents and attended focus groups, podcast planning meetings, and podcast recording sessions to co-design resources. Qualitative interviews of participants’ co-design experiences were conducted and described in accordance to the consolidated criteria for reporting qualitative research 32-item checklist (Tong et al. 2007). Future research is planned to evaluate the uptake of the co-designed resources and longer-term PBS+PLUS implementation as the final aspect of the KTA framework.
Participants
Co-design contributors were individuals with ABI and family members who received the PBS+PLUS intervention and clinicians who delivered PBS+PLUS in a previous RCT conducted between 2015 and 2019 (Gould et al. 2019b; Ponsford et al. 2022) or at a university-based PBS+PLUS community clinic (2021–present). Contributors were invited to take part in co-designing the guidebook or podcast via email or phone call. Written information was provided which explained the purpose, time commitment, and reimbursement for involvement. Contributors were subsequently invited to participate in a qualitative interview via telephone or email to explore their co-design experiences, and this sub-set of contributors who took part in this qualitative interview are referred to as ‘participants’.
Measures
Participant demographics were gathered via questionnaire. Qualitative interviews followed a semi-structured schedule (see Supplementary Appendix S1) to explore co-design experiences (e.g. likes, dislikes, challenges), feedback regarding how persons with ABI were supported to participate, the likely impact of produced resources, and advice for resource distribution and future project direction.
Procedure
Institutional ethics approval was obtained (Monash University HREC), and all participants provided written informed consent for the qualitative interview, podcast and/or focus group attendance. Participants received gift cards following participation in focus groups and/or podcast recording sessions.
The intervention guidebook, which included PBS+PLUS principles, strategies, case examples, templates, and lay-summaries was co-created in several stages in collaboration with people with ABI (n = 2), close-others (n = 7), and clinicians (n = 5). First, as part of the Knowledge Creation stage of the KTA framework (Graham et al. 2006), the intervention guidebook including 18 topic areas was drafted from existing resources and review of training and supervision notes from the RCT by the research team. Additional content and feedback was provided by ABI clinicians involved in the PBS+PLUS RCT (Ponsford et al. 2022) and naïve early career clinicians (n = 3) to ensure content was relevant and accessible to clinicians with limited PBS+PLUS experience and knowledge. Clinicians (n = 5) attended up to four focus groups between March 2020 and July 2021, facilitated by authors KG, JP, and Dr Tim Feeney. Groups were held face to face (n = 1) and via teleconferencing (n = 3) and were approximately 1–2 h in duration. Clinicians contributed at an ‘Involve’ level of co-design (Manafò et al. 2018), whereby they worked directly with the research team through reviewing and providing feedback on the content of the written materials from drafting to finalising the guidebook. They provided feedback and additional content, e.g. accessibility and clarity of language, level of written detail, appropriateness of examples and case studies. Feedback was discussed within focus groups with notes taken by the research team, and revisions were made accordingly following focus groups.
The drafted guidebook was then reviewed by people with ABI (n = 2) and close-others (n = 7), facilitated by authors KG and JC. KG had a pre-existing relationship with participants through her role as lead clinician in the RCT. ABI and close-other contributors adopted a ‘Consult’ co-design role (Manafò et al. 2018), providing feedback on and editing the guidebook during three focus groups. Focus groups were held via teleconferencing and were 1.5 h each in duration. Five participants attended all three groups and four participants attended two groups. Sessions were recorded and provided to absentees. The first focus group was an introductory session, providing a refresher of PBS+PLUS and findings from the RCT (Gould et al. 2021; Ponsford et al. 2022). The facilitators used shared PowerPoint slides during focus groups, which included an agenda, questions about the resources, and explicit discussion of expectations (e.g. creating a safe place to share honest thoughts, project aims, the value of attendee’s contributions, inclusion of all voices, and confidentiality). Contributors introduced themselves to the group to enable rapport-building with facilitators and other attendees. An overview was provided of the co-design guidebook and topics. Contributors were provided with intervention guide draft documents to read and review prior to subsequent focus groups via online document sharing as per their preference following discussion of options. Contributors were encouraged to provide feedback on the accessibility of language, topics, and examples covered, and relevance of content. Focus groups ended with a summary and a plan for the next meeting. Across the second and third focus groups, seven intervention guide draft topics were discussed and reviewed by the group and general discussion took place on the scope, style, layout, and main audience for the guidebook. Comments made on shared documents were discussed and explored further through open-ended questions (e.g. ‘how easy to understand was this information?’, ‘what were your impressions of the case example?’). Revisions were made accordingly following each focus group.
All intervention guide topics underwent a final review by two experienced PBS+PLUS clinicians and authors KG and JP, and finalised resources were formatted with input from co-design contributors (clinicians, participants with ABI, and close-others) who provided feedback on colour preferences, illustrations, font style and size, and organisation of information.
The podcast, called ‘Relentless Optimism’, featured those with experience of PBS+PLUS within the RCT or training clinic, including persons with ABI, close-others, and clinicians. Each episode focussed on a specific aspect of the PBS+PLUS approach, as pertaining to participants’ own intervention experience, e.g. The Flexible Framework, Projects, Behaviour Analysis. At the time of this study, recording of podcast episodes, hosted by author KG, had included individuals with ABI (n = 4), family members (n = 2), and clinicians (n = 3), who took part at an ‘Involve’ co-design level. Podcast episodes were recorded at contributors’ homes (n = 1), by video call (n = 7), or at a recording studio (n = 2) and were approximately 1–2 h each in duration. Prior to recording each episode, participants met with KG to determine the podcast topic, develop a semi-structured episode plan, and prepare notes for discussion. Podcast interviews were recorded across 1–2 sessions. Contributors reviewed and provided feedback on the edited podcast episode before publishing. Two contributors to the guidebook co-design participated in a podcast recording after their qualitative interview, and as such were not captured in the current evaluation.
Interviews exploring co-design experiences were conducted between August 2021 and March 2023 by JC and KH. Participants were interviewed alone. Interviews were held via video call (n = 8) and telephone (n = 6); audio was recorded and externally transcribed. Interviewers maintained journals with observations and reflections.
Data analysis
Descriptive statistics for participant demographics were summarised using Microsoft Excel (2019). Qualitative interventions were transcribed and organised using NVivo (ver. 12.5.0, QSR International, https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home). Information about practical feedback was summarised descriptively. Braun and Clarke’s (2006, 2022) six-phase reflexive thematic analysis technique was used to qualitatively interpret thematic experiences of the co-design process in a non-linear fashion (i.e. iteratively moving back and forth between the six-phases). A contextualist approach was used, whereby analysis of participant experiences was acknowledged to be shaped by participant and researchers’ interpretations, experiences, and cultural contexts (Madill et al. 2000; Braun and Clarke 2006, 2022). As such, an objective ‘reality’ was not sought, and researcher subjectivity was acknowledged.
First, all authors familiarised themselves with the data via repeated readings. Initial codes were developed by JC and KH with an inductive approach and organised into initial themes at both a semantic and latent level (Braun and Clarke 2006, 2022), and mapped using Miro: Collaborative whiteboard (RealtimeBoard Inc.). Initial themes were revised nine times through discussion between all authors. Final themes were defined and labelled, with representative quotes selected. Researchers were JC (female) and KH (male), both neuropsychology doctoral students, JP (female, neuropsychologist, PhD) and KG (female, neuropsychologist, DPsych). All researchers were experienced in qualitative interviewing and analysis through involvement in prior qualitative research. Consistent with reflexive thematic analysis, methods of cross-coding and saturation were not used (Varpio et al. 2017; Braun and Clarke 2021, 2022). Participants were provided with a short dot-point summary of their interview and three participants provided minor additional comments which were integrated prior to analysis. The majority of individuals who participated in co-design activities took part in the current qualitative study, therefore, the sample size was deemed appropriate given the specific context (Varpio et al. 2017).
Results
Participants
Co-design contributors to the guidebook and podcast were individuals with ABI (n = 5), family members (n = 8), and clinicians (n = 5). Participants who engaged in a qualitative interview comprised individuals with ABI (n = 4), family members (n = 7), and clinicians (n = 3). One contributor with ABI and one close-other who took part in the podcast did not respond to the interview invitation, and two clinicians who attended the focus groups were not available for interview. See Table 1 for contributor/participant pseudonyms, relationships, and contributions. As summarised in Table 2, participants with ABI were two males and two females aged 48–60 years (M = 54.50 years) who had sustained severe ABIs 5–31 years prior (M = 15.75 years). Table 3 displays that close-other participants were five females and two males aged 32–72 years (M = 56.57), comprising spouses, siblings, parents, and a daughter. Clinician participants were female, aged 43–45 years (M = 44 years), and working in private practice as neuropsychologists and occupational therapists. Interviewers had pre-existing relationships with some participants through focus group facilitation (JC, n = 8) and involvement in a related qualitative study (KH, n = 2). Qualitative interviews were between 25 and 75 min in duration (M = 44 min). No participants reported feeling distressed after interviews.
| Participant with ABI pseudonym | Close other pseudonym (relationship) | ABI clinician pseudonym (role) | Contribution E | |
|---|---|---|---|---|
| ZoeyB | Yuna (sister)B | Focus groups, podcast, interview | ||
| AubreyD | Nasir (husband)D | Focus groups, interview | ||
| Elias (husband)A | Focus groups, interview | |||
| Yasmin (sister)A | Focus groups, interview | |||
| Helena (daughter)A | Focus groups, interview | |||
| Natalie (mother)B | Focus groups, interview | |||
| Allison (mother)D | Focus groups, interview | |||
| YianniC | Podcast, interview | |||
| ThomasD | Podcast, interview | |||
| Adeline (OT, NP)A | Focus groups, podcast, interview | |||
| Mary (NP)B | Focus groups, podcast, interview | |||
| Elise (OT)C | Focus groups, podcast, interview | |||
| JoshuaD | EmmettD | Podcast | ||
| Matthew | Focus groups | |||
| Lillian | Focus groups |
| n | M | s.d. | Range | ||
|---|---|---|---|---|---|
| No. of ABI participants | 4 | ||||
| Age at interview (years) | 54.50 | 4.93 | 48–60 | ||
| Gender | |||||
| Male | 2 | ||||
| Female | 2 | ||||
| Living situation | |||||
| Living alone | 2 | ||||
| Living with family | 2 | ||||
| Employment status | |||||
| Working fulltime | 2 | ||||
| Homemaker | 1 | ||||
| Unemployed | 1 | ||||
| Highest qualification | |||||
| Completed year 10 | 1 | ||||
| Diploma/certificate | 1 | ||||
| Bachelor’s degree | 1 | ||||
| Master’s degree | 1 | ||||
| Years of education (years) | 16.5 | 4.51 | 10–20 | ||
| Cause of ABI | |||||
| TBI – fall | 1 | ||||
| TBI – MVA | 1 | ||||
| TBI – assault | 1 | ||||
| Overdose | 1 | ||||
| Time since injury | 15.75 | 12.15 | 5–31 | ||
| ABI severity (self-reported) | |||||
| Severe | 4 | ||||
| Funding received | |||||
| No funding | 1 | ||||
| NDIS | 2 | ||||
| TAC | 1 | ||||
ABI, acquired brain injury; MVA, motor vehicle accident; NDIS, National Disability Insurance Scheme; TAC, Transport Accident Commission.
| n | M | s.d. | Range | ||
|---|---|---|---|---|---|
| No. of close-other participants | 7 | ||||
| Age at interview (years) | 56.57 | 14.27 | 32–7 | ||
| Gender | |||||
| Male | 2 | ||||
| Female | 5 | ||||
| State of residence | |||||
| VIC | 7 | ||||
| Length of relationship with close other with ABI (years) | |||||
| Frequency of contact with close other with ABI (years) | 43.71 | 13.00 | 25–63 | ||
| Daily | 3 | ||||
| Once a week | 1 | ||||
| Several times a week | 3 | ||||
ABI, acquired brain injury.
Co-design structure and considerations
Regarding the intervention guidebook, while some individuals described it as ‘quite valuable and easy to understand’ (Zoey, ABI), others expressed that it was too complex for most family members and people with ABI. As a result, the intervention guidebook was determined as being aimed at practitioners, and plain language handouts for families to complement each topic were added. Participants also preferred case study examples to be expanded, and case examples were revised to include more detail, and unfamiliar terminology was simplified.
Overall, co-design resources were appraised as helpful training tools, and participants felt ‘the broadest impact will just be education and getting it out there actually in the community’ (Zoey, ABI). Accordingly, training was recommended to be delivered alongside ongoing peer supervision through workshops and tertiary level teaching. Importantly, participants stated that training must be ongoing: ‘I think it would be a poor representation if we just provided the training and gave them the manual…and then said, “Off you go”’ (Elise, clinician). Participants reflected on the breadth of resources created and valued the combination of written resources and podcast episodes.
Specific suggestions for avenues of resource distribution included making information available online, hosting information sessions, distributing information through ABI services (e.g. inpatient neurorehabilitation, discharge planning, outpatient rehabilitation), professional groups (e.g. brain injury organisations, research conferences), disability support groups, and disability funding organisations (e.g. Australia’s National Disability Insurance Agency).
Participants appreciated the convenience of online participation and reported easy navigation of the teleconferencing program, Zoom. The 1.5-h duration with a short 10-min break was positively regarded by participants with ABI and close-others. However, some participants recommended groups to be longer as teleconferencing restricted the ability for conversation to move as quickly as real-life interactions. Participants were satisfied with the group size (up to five clinicians, and up to eight participants with ABI/close-others). Reflections regarding the number of sessions held were variable, with some participants reporting three focus groups as appropriate, and other participants reporting that ‘with three sessions, it’s a bit hard to get good group interaction going’ (Elias, husband).
Participants appreciated being provided with resources to read and review prior to focus group meetings as it allowed participants to re-visit resources and ‘see how it had settled and percolating away’ (Yuna, sister). This was particularly helpful for participants with ABI: ‘being able to prepare – because I’m a lot slower than I used to be…I had already provided comments, and then when I saw what my comments were, that sometimes triggers additional things…you’re getting two goes at contributing to the same thing’ (Aubrey, ABI). Pre-reading further allowed in-group discussions to cover more content within a shorter timeframe. Most participants reported one week as a desirable amount of time to review pre-session materials, however, some participants would have liked more time: ‘I found doing it within a week was a challenge…there was a fair bit of reading’ (Nasir, husband). For some participants, the resources for review were lengthy and complex: ‘The first one we looked at which was the introduction…it was quite heavy…but you needed that…it sets context to the whole thing’ (Natalie, mother).
Participants with ABI felt well-supported to participate in the focus groups due to frequent check-ins and support provided: ‘I felt fully supported via the patience shown if I was experiencing language difficulties on the day’ (Zoey, ABI). Conducting sessions via teleconferencing enabled contributors to leave and re-join the group as required, if an additional break was needed. Other participants reflected that while the involvement of people with ABI was important, the co-design process used in the current study may be unsuitable for people with ABI with higher support needs: ‘My son doesn’t think he has a brain injury…So if I was to sit down and have him as part of this study, I think, A, it would probably just go straight over his head, and B, he just wouldn’t relate to it because he would say, “I just don’t have an injury”’ (Allison, mother). Participants’ suggestions for increasing accessibility for individuals with ABI included more frequent check-ins during the group, smaller group sizes, and less pre-reading.
Hearing others’ stories of ABI at the focus groups during introductions was described by some participants to be ‘a bit overwhelming to hear all at once’ (Yuna, sister). Similarly, it was challenging for participants to share their own stories: ‘I’m fine to talk about it, as is [sister]…but I think it’s always stirring. It’s always a painful thing to have to bring up’ (Yuna, sister). Suggestions to support participants in sharing and hearing potentially confronting stories included providing advanced warning, scheduling additional breaks throughout focus groups, and reassuring participants they may choose how much or how little they would like to share.
Podcast contributors largely considered the process as positive. Informal recording settings were preferred as they created a ‘no-pressure situation’ (Thomas, ABI), which helped participants to feel more comfortable: ‘It was such an intimate group and there wasn’t someone else with a mic or a formal sound recorder…you didn’t feel like there were strangers eavesdropping’ (Yuna, sister). Contributors felt well supported in the process: ‘I’m familiar with listening to podcasts but had never done a podcast before, but [KG]…did a great job sort of just going through some of the kind of tips of being a guest on a podcast before we started’ (Adeline, clinician). Cue cards were utilised during podcast recording (e.g. visual cards held up to communicate when to slow down), and participants found this helpful. Participants also appreciated discussing the episode plan prior to podcast recording and being provided with questions to pre-consider. This allowed them the required time and support to formulate their responses: ‘I get a bit muddled sometimes…so I had a little bit of a run down on basically what was gonna be asked and [my clinician] just stayed on the side just in case I needed any help or to explain something’ (Yianni, ABI).
One aspect reported as challenging was balancing structure and flexibility in podcast recordings: ‘striking that balance between preparing and then just being able to feel confident talking off the cuff’ (Adeline, clinician). Some felt this flexibility reduced the amount of content that could be covered. It was additionally challenging to balance providing information about PBS+PLUS and exploring contributors’ personal experiences, with a preference for greater focus on the latter.
Findings from the thematic analysis
Co-design experiences were conceptualised as two core related themes covering four sub-themes, illustrated as a tree (see Fig. 2) to demonstrate the foundational aspects which then germinated the benefits of participation. The theme of ‘Esteeming Experiences’ was represented by the soil and roots of the tree as key factors underpinning a positive co-design experience. Growing from this foundation was the second theme of ‘Empowerment’ resulting from the co-design experiences, represented by the crown of the tree. This encompassed subthemes of increased personal confidence and re-invigorated engagement with PBS+PLUS strategies.
The co-design approach drew on participants’ personal experiences of ABI and PBS+PLUS. Trusting relationships between peers and facilitators enabled contributors to share their perspectives openly and promoted deeper learning in an environment that was flexible and person driven.
Centralising humanity
Participants felt that their lived experiences were placed at the centre of the co-design process, and felt they were viewed as experts with a connection to their personal humanity rather than research participants: ‘People with the injuries or their family members had a really genuine impact and contribution to what’s happening just like they did in their intervention’ (Mary, clinician). Resources which incorporated participant stories were seen to illustrate real-world experiences, bringing a humanist perspective to the process: ‘to hear the human voices of the people that have been through it, it gives it a real humanity’ (Yuna, sister). Participants reflected on the flexible structure of co-design groups and podcast recording and said that they felt ‘more comfortable with it free-flowing, with no pressure’ (Mary, clinician). This gave participants the autonomy to decide the extent of their contribution: ‘I think there was a lot of freedom to speak or be involved as much or as little as you feel comfortable’ (Helena, daughter).
Participants described several facilitator traits that increased trust and comfort, including effective communication skills, compassion, respect, and an unbiased approach to facilitating discussion. Participants appreciated facilitators honouring person-driven practices:
You very rarely hear from experts who are kind of prepared to open the floor and say…‘It might not be perfect.’ ‘Cause at the heart of it, that’s what it’s about – client-driven – the person at the centre of their own experience driving it, making the changes. (Yuna, sister)
Enhancing perspectives
Sharing stories with other contributors enabled participants to gain a new perspective on their own experiences. Sharing their personal stories through focus groups and podcasts enabled personal reflection on participants’ progress: ‘It reinforced a lot of the changes…a lot of improvements that had happened’ (Thomas, ABI).
Participants resonated with the accounts of other participants: ‘Hearing their stories…gave an idea of “We’re not different”. We’re not out there in outer space. Our experience is shared by others in the ABI world’ (Natalie, mother). Through developing respectful relationships, participants felt a connection with other people with similar lived experiences of ABI and PBS+PLUS. Participants felt valued, and this was appreciated due to the difficulty of sharing stories with their existing social networks:
I find it often very hard to articulate or explain what I’m going through with Mum and her care with my friends who may not understand. Yes, they empathise, and they can provide advice, but without that lived experience, it’s hard for them to really truly understand. (Helena, daughter)
Participants reflected on the benefits of including people with different experiences and alternative points of view: ‘The more input the better. I like to compare and contrast with my own story’ (Zoey, ABI). Hearing each other’s stories prompted participants to reflect on their own situation:
It puts my position into perspective a little bit for me that I’m extremely fortunate with how [my son] has come out the other end of this and how he’s managing in life. (Allison, mother)
Similarly, clinicians valued hearing different approaches to PBS+PLUS from other clinicians: ‘You get some great ideas from everyone else how to apply [PBS+PLUS] in really different ways’ (Elise, clinician). Including varied stories, perspectives and feedback was endorsed as a crucial aspect of creating a ‘factual and holistic document that’s supposed to help everyone’ (Helena, daughter).
Hearing different perspectives and stories of other contributors’ experiences was a limiting factor, however, for Elias’ personal learning. He perceived some intervention resources as irrelevant to his own situation: ‘A lot of the literature really didn’t fit in with the way people needed to work with [my wife]’ (Elias, husband). He did, however, connect with one intervention guide topic: ‘When we finally got to talk about the environment, then I felt better’ (Elias, husband).
The second theme of ‘Empowerment’ captured how the co-design process and respectful environment fostered confidence to speak up. This confidence enhanced participants’ ongoing engagement with utilising the PBS+PLUS approach and promoted an interest in having an expert role in the intervention.
Building confidence
The trusting and respectful setting of the focus groups and podcast recording sessions enabled participants to build their confidence in sharing feedback and personal information as the groups progressed. Participants with ABI and close-others were empowered to provide feedback despite previously held reservations:
I’ve got parts of my brain that don’t work in the same way that they did…I’ve found techniques or rewritten the techniques I used to use to suit me now…the sessions allowed me to actually see that and not be frightened of actually making comments – not using the fact that I’m not a clinician as an excuse not to contribute. (Aubrey, ABI)
For some participants, co-design was a new and unfamiliar experience: ‘The podcast for me was definitely outside my comfort zone. I’m not a confident public speaker. So, that was a really good learning opportunity’ (Adeline, clinician).
Participants felt valued for their expertise regarding their own lives and were empowered to continue using their knowledge and insights gained from their participation, sometimes in new contexts: ‘I thought that was quite a powerful process and I might even try that with some of my things that I do [as an engineer] rather than waiting for someone to give me feedback and a document’ (Nasir, husband). The co-design experience encouraged clinicians to reflect on their skills and capabilities in delivering PBS+PLUS: ‘Through this work, I’ve really identified that occupational therapy is actually really well-placed to do this [PBS+PLUS] work’ (Elise, clinician).
Re-energising PBS+PLUS
Through discussing the PBS+PLUS approach during co-design sessions, participants reinvigorated their knowledge and understanding of PBS+PLUS strategies learnt several years prior. Participants reflected on their renewed motivation to upskill others in their care team to utilise PBS+PLUS, by adopting an expert trainer role: ‘I can actually teach the staff at the nursing home who are more responsible for my brother some of those things’ (Yasmin, sister). Re-visiting PBS+PLUS strategies and discussing personal experiences throughout the co-design process was described as ‘re-energising’ (Natalie, mother) and boosted enthusiasm for PBS+PLUS. Participants acquired ideas on adapting PBS+PLUS strategies used by other participants, and reflected a renewed sense of the role PBS+PLUS would continue to have in everyday life:
It [PBS+PLUS] actually isn’t behind us as it’s still in front of us, it’s still with us…and my wife [Aubrey, ABI] is quite quick to remind me of that. (Nasir, husband)
Discussion
The KTA framework (Graham et al. 2006) has underpinned our research teams’ body of work in understanding challenging behaviours after ABI and the development, implementation, and evaluation of a behavioural intervention, PBS+PLUS. This project utilised co-design methodology in a novel way to include varied stakeholders, including people with ABI, close-others, and clinicians, in the development and production of an intervention guidebook and podcast. As per the two aims of this study, a detailed description of the co-design process was provided, and participant experiences were evaluated through qualitative interviews to understand the future application of this specific co-design approach within the ABI setting. Overall, all three participant cohorts had generally positive experiences of engaging in co-design. Using reflexive thematic analysis, participant experiences were captured through two core themes, ‘Esteeming Experiences’ and ‘Empowerment’. Feedback was provided regarding the co-design process and conveyed practical suggestions for resource and training implementation.
Several considerations were identified in the current study relating to utilising co-design with people with ABI. Providing pre-meeting preparation material, holding multiple focus groups via teleconferencing, and limiting focus groups to up to eight contributors at a time was overall appraised positively by contributors. A flexible approach was identified as paramount for catering to individual needs (e.g. allowing participants to spend as much or as little time as they chose reviewing pre-reading materials, and employing teleconferencing to enable contributors to take breaks as needed). The additional time and flexibility required to conduct co-design has been documented by others (Dimopoulos-Bick et al. 2019; Slattery et al. 2020). Based on our study, people with ABI and cognitive-communication impairments may benefit from further time and support above the already lengthy process of co-design, and this should be anticipated from study outset. Some close-others said that the co-design approach used was not appropriate for their family member with ABI due to reduced insight and cognitive impairments, reflecting a potential limitation to an inclusive methodology that requires sharing of lived experience. Possible solutions include involving close-others as per the current study, providing increased support in 1:1 or asynchronous discussions rather than group meetings, or seeking contribution at a lower level of co-design involvement, e.g. provision of information and participating in quantitative or qualitative research (Manafò et al. 2018).
Participant experiences reflected a recurring theme of the influence of rapport with facilitators in creating a genuine and non-judgemental space for people to openly share their thoughts and feelings. Rapport between contributors and facilitators has been identified as important in other studies which include people with ABI (e.g. Carminati et al. 2023). Interpersonal trust within co-design is not unique to ABI settings (Clarke et al. 2021), with reduced opportunity to build rapport leading to difficulty with contributor-to-project team engagement (Maher et al. 2017). Trust was potentially supported in the current study by the explicit discussion of attitudes and expectations rather than relying on people with ABI to understand this implicitly. The creation of a trusting group may also have been served by pre-existing relationships between facilitators and contributors, and the dual-role of facilitators as clinicians. Future co-design studies within the field may also benefit from ‘setting the table’ expectation discussions and careful selection of facilitators with strong interpersonal skills.
The qualitative findings which affirmed the personal benefits of co-design involvement, such as increased confidence and sharing common experiences, have been identified in other co-design projects (Bailey et al. 2015; Di Lorito et al. 2018; Hoepner et al. 2022). Uniquely for close-other and clinician participants in the current study, benefits also included increased confidence in application of PBS+PLUS strategies. For participants with ABI, benefits of the co-design process centred around taking an expert role in designing and developing their own interventions. Contributing to a meaningful project can encourage individuals to identify as accomplished experts, promoting their self-efficacy, motivation and community interaction (Ylvisaker et al. 2007; Feeney and Capo 2010; Goldblum 2010; Hoepner et al. 2022; Carminati et al. 2023).
Directly addressing consumer needs is an important aspect of clinical implementation and knowledge translation (Graham et al. 2006; Meyers et al. 2012), and co-designed resources may have higher applicability when meeting the needs and addressing potential barriers of target populations (Steen et al. 2011; Slattery et al. 2020). In the current study, using the KTA framework was a helpful way of firstly identifying clinician needs, and secondly co-designing resources that were directly relevant and effective. It is important to note that while the KTA framework and other co-design or implementation frameworks are important for ensuring structure and rigour in evidence-based implementation, they should be followed in an iterative and flexible way, developing implementation resources through multiple rounds of feedback and refining.
Limitations and future direction
There are several limitations that require acknowledgement. Firstly, more close-others than people with ABI contributed to co-designing the guidebook. The accuracy of close-other participants in providing representative feedback regarding the perspective of their family member with ABI is unclear. As such, the guidebook may serve the needs of close-others more than people with lived experience. Secondly, contributors with ABI were purposely invited from the previous PBS+PLUS RCT based on their engagement and estimated ability to take part in co-design activities (e.g. able to read and provide feedback on lengthy written materials for the guidebook and oral verbal capacity for the podcast). Participant reflections may therefore represent the experiences of those more capable of participating in co-design, and participants potentially may have had pre-conceived positive attitudes toward PBS+PLUS and this co-design project. These may further limit the generalisability of the study resources and findings. Lastly, the extended time between co-design activities and participation in the qualitative interviews may have resulted in a recall bias, particularly for people with ABI. However, the qualitative interviews were detailed and encompassed both positive and negative reflections.
This study only evaluates the co-design experience of contributors and does not evaluate the quality or uptake of produced resources within the community. Now that these resources have been developed, we have implemented these resources within community ABI services and are undertaking monitoring, evaluating, and sustainability activities as part of the final Action Cycle stages of the KTA framework (Graham et al. 2006). Ongoing evaluation of these novel resources continues to be necessary to inform evidence-based clinical and community translation, and resources may require adaptation as new needs and barriers are identified in the future (Graham et al. 2006).
Conclusion
Guided by the KTA framework (Graham et al. 2006), this study described the novel application of co-design to an intervention guidebook and podcast series, to support implementation of the PBS+PLUS approach. Practical strategies were used to maximise meaningful contribution from people with ABI. Secondly, qualitative evaluation was conducted to explore the co-design experiences of developing these resources from the perspectives of people with ABI, family members, and clinicians. Overall, participants were positive about the co-design process and felt supported by facilitators, who created a respectful and understanding environment which fostered self-reflection and confidence. Participants felt empowered and experienced enhanced self-efficacy in implementing PBS+PLUS practices within their everyday lives. These findings highlight the benefit of co-design of clinical resources, by promoting personal benefits for individual contributors through making meaningful contributions to the creation of novel resources, advancing translation progress along the knowledge to action pathway.
Data availability
The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.
Conflicts of interest
The authors report no conflict of interest. The authors do not have any current or previous financial income from the publication of the PBS+PLUS intervention guidebook or podcast series.
Declaration of funding
This study was funded by the Turner Institute for Brain and Mental Health, Monash University through a grant received by author KG.
Ethics standard
The authors assert that all procedures contributing to this work comply with ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
Acknowledgements
The authors would like to acknowledge and thank the generosity, time, and effort of all co-design participants involved in resource development and this qualitative study; Dr Tim Feeney for his expertise in PBS and guidance in developing PBS+PLUS, supervision and consultation with PBS+PLUS clinicians, and contributions to the PBS+PLUS intervention guide and podcast series; clinicians and researchers who contributed to the drafting, design, and development of the PBS+PLUS resources (Nadine Holgate, Dr Toni Whithiel, Jai Carmichael, Kiara Corso, James McPherson); Kat Orgallo and Ann Likhovetsky, graphic designers; and Fiona Landgren, copyeditor.
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