Free Standard AU & NZ Shipping For All Book Orders Over $80!
Register      Login
Brain Impairment Brain Impairment Society
Journal of the Australasian Society for the Study of Brain Impairment
RESEARCH ARTICLE (Open Access)

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 https://orcid.org/0000-0002-6689-7231 A B , Kristian Holth https://orcid.org/0000-0002-3264-8800 A B , Jennie L. Ponsford https://orcid.org/0000-0003-0430-125X A B and Kate Rachel Gould https://orcid.org/0000-0002-3564-7408 A B *
+ Author Affiliations
- Author Affiliations

A Turner Institute for Brain and Mental Health, School of Psychological Sciences, Monash University, Clayton, Vic. 3800, Australia.

B Monash-Epworth Rehabilitation Research Centre, Epworth Healthcare, Richmond, Vic. 3121, Australia.

* Correspondence to: Kate.Gould@monash.edu

Handling Editor: Natasha Lannin

Brain Impairment 25, IB23060 https://doi.org/10.1071/IB23060
Submitted: 26 June 2023  Accepted: 14 March 2024  Published: 11 April 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

References

Analytis P, Hicks AJ, Gould KR, Feeney TJ, Ponsford J (2021) Clinical perspectives on delivering a Positive Behaviour Support intervention for challenging behaviours following acquired brain injury. Neuropsychological Rehabilitation 33, 281-304.
| Crossref | Google Scholar |

Bailey S, Boddy K, Briscoe S, Morris C (2015) Involving disabled children and young people as partners in research: a systematic review. Child: Care, Health and Development 41(4), 505-514.
| Crossref | Google Scholar | PubMed |

Bate P, Robert G (2007) Toward More User-Centric OD: Lessons From the Field of Experience-Based Design and a Case Study. The Journal of Applied Behavioral Science 43(1), 41-66.
| Crossref | Google Scholar |

Bird M, McGillion M, Chambers EM, Dix J, Fajardo CJ, Gilmour M, Levesque K, Lim A, Mierdel S, Ouellette C, Polanski AN, Reaume SV, Whitmore C, Carter N (2021) A generative co-design framework for healthcare innovation: development and application of an end-user engagement framework. Research Involvement and Engagement 7(1), 12.
| Crossref | Google Scholar | PubMed |

Bould E, Callaway L (2021) A co-design approach to examine and develop pathways to open employment for people with acquired brain injury. Brain Impairment 22(1), 50-66.
| Crossref | Google Scholar |

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77-101.
| Crossref | Google Scholar |

Braun V, Clarke V (2021) One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology 18(3), 328-352.
| Crossref | Google Scholar |

Braun V, Clarke V (2022) ‘Thematic Analysis: A Practical Guide.’ (SAGE)

Brereton M, Sitbon L, Abdullah MHL, Vanderberg M, Koplick S (2015) Design after design to bridge between people living with cognitive or sensory impairments, their friends and proxies. CoDesign 11(1), 4-20.
| Crossref | Google Scholar |

Carmichael JJ, Gould KR, Hicks AJ, Feeney TJ, Ponsford JL (2020) Understanding Australian Community ABI Therapists’ Preferences for Training in and Implementing Behaviour Interventions: A Focus on Positive Behaviour Support. Brain Impairment 21(2), 191-207.
| Crossref | Google Scholar |

Carmichael JJ, Hicks AJ, Gould KR, Feeney TJ, Analytis P, Ponsford JL (2021) ‘We struggle and muddle.’ A qualitative study exploring community ABI therapists’ experiences of using, training in and implementing behaviour interventions. Brain Impairment 22(1), 34-49.
| Crossref | Google Scholar |

Carminati J-YJ, Ponsford JL, Gould KR (2023) “This group… I felt like I was medicating myself from this cyberscam illness that was living with me.” A qualitative evaluation of co-designing cybersafety training resources with and for people with acquired brain injury. Disability and Rehabilitation 45(22), 3719-3729.
| Crossref | Google Scholar | PubMed |

Carr EG, Dunlap G, Horner RH, Koegel RL, Turnbull AP, Sailor W, Anderson JL, Albin RW, Koegel LK, Fox L (2002) Positive Behavior Support: Evolution of an Applied Science. Journal of Positive Behavior Interventions 4(1), 4-16.
| Crossref | Google Scholar |

Clarke RE, Briggs J, Armstrong A, MacDonald A, Vines J, Flynn E, Salt K (2021) Socio-materiality of trust: co-design with a resource limited community organisation. CoDesign 17(3), 258-277.
| Crossref | Google Scholar |

Di Lorito C, Bosco A, Birt L, Hassiotis A (2018) Co-research with adults with intellectual disability: a systematic review. Journal of Applied Research in Intellectual Disabilities 31(5), 669-686.
| Crossref | Google Scholar | PubMed |

Dimopoulos-Bick TL, O’Connor C, Montgomery J, Szanto T, Fisher M, Sutherland V, Baines H, Orcher P, Stubbs J, Maher L, Verma R, Palmer VJ (2019) “Anyone can co-design?”: a case study synthesis of six experience-based co-design (EBCD) projects for healthcare systems improvement in New South Wales, Australia. Patient Experience Journal 6(2), 93-104.
| Crossref | Google Scholar |

Feeney TJ, Capo M (2010) Making meaning: the use of project-based supports for individuals with brain injury. Journal of Behavioral and Neuroscience Research 8(1), 70-80.
| Google Scholar |

Feeney TJ, Ylvisaker M (1995) Choice and routine: antecedent behavioral interventions for adolescents with severe traumatic brain injury. Journal of Head Trauma Rehabilitation 10(3), 71-86.
| Crossref | Google Scholar |

Feeney T, Ylvisaker M (2006) Context-sensitive cognitive-behavioural supports for young children with TBI: a replication study. Brain Injury 20(6), 629-645.
| Crossref | Google Scholar | PubMed |

Frankena TK, Naaldenberg J, Cardol M, Garcia Iriarte E, Buchner T, Brooker K, Embregts P, Joosa E, Crowther F, Fudge Schormans A, Schippers A, Walmsley J, O’Brien P, Linehan C, Northway R, van Schrojenstein Lantman-de Valk H, Leusink G (2019) A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research 63(1), 1-11.
| Crossref | Google Scholar | PubMed |

Gillard S, Simons L, Turner K, Lucock M, Edwards C (2012) Patient and Public Involvement in the Coproduction of Knowledge: Reflection on the Analysis of Qualitative Data in a Mental Health Study. Qualitative Health Research 22(8), 1126-1137.
| Crossref | Google Scholar | PubMed |

Goldblum G (2010) Mark Ylvisaker’s Influence on Scripts, Videos, and Projects within a South African Context. Seminars in Speech and Language 31(3), 177-186.
| Crossref | Google Scholar | PubMed |

Goodyear-Smith F, Jackson C, Greenhalgh T (2015) Co-design and implementation research: challenges and solutions for ethics committees. BMC Medical Ethics 16(1), 78.
| Crossref | Google Scholar | PubMed |

Gore NJ, McGill P, Toogood S, Allen D, Hughes JC, Baker P, Hastings RP, Noone SJ, Denne LD (2013) Definition and scope for positive behavioural support. International Journal of Positive Behavioural Support 3(2), 14-23.
| Google Scholar |

Gould KR, Hicks AJ, Hopwood M, Kenardy J, Krivonos I, Warren N, Ponsford JL (2019a) The lived experience of behaviours of concern: a qualitative study of men with traumatic brain injury. Neuropsychological Rehabilitation 29(3), 376-394.
| Crossref | Google Scholar |

Gould KR, Ponsford JL, Hicks AJ, Hopwood M, Renison B, Feeney TJ (2019b) Positive behaviour support for challenging behaviour after acquired brain injury: an introduction to PBS + PLUS and three case studies. Neuropsychological Rehabilitation 31(1), 57-91.
| Crossref | Google Scholar |

Gould KR, Feeney TJ, Hicks AJ, Ponsford JL (2021) Individualized goal attainment scaling during a trial of positive behaviour support in adults with acquired brain injury. Neuropsychological Rehabilitation 32, 2392-2410.
| Crossref | Google Scholar |

Graham ID, Logan J, Harrison MB, Straus SE, Tetroe J, Caswell W, Robinson N (2006) Lost in knowledge translation: time for a map? Journal of Continuing Education in the Health Professions 26(1), 13-24.
| Crossref | Google Scholar | PubMed |

Gustavsson SM, Andersson T (2019) Patient involvement 2.0: experience-based co-design supported by action research. Action Research 17(4), 469-491.
| Crossref | Google Scholar |

Hammond FM, Davis C, Cook JR, Philbrick P, Hirsch MA (2016) A Conceptual Model of Irritability Following Traumatic Brain Injury: A Qualitative, Participatory Research Study. The Journal of Head Trauma Rehabilitation 31(2), E1-E11.
| Crossref | Google Scholar |

Hendriks N, Slegers K, Duysburgh P (2015) Codesign with people living with cognitive or sensory impairments: a case for method stories and uniqueness. CoDesign 11(1), 70-82.
| Crossref | Google Scholar |

Hendryckx C, Couture M, Gosselin N, Nalder E, Gagnon-Roy M, Thibault G, Bottari C (2023) The dual reality of challenging behaviours: overlapping and distinct perspectives of individuals with TBI and their caregivers. Neuropsychological Rehabilitation 1-25.
| Crossref | Google Scholar | PubMed |

Hicks AJ, Gould KR, Hopwood M, Kenardy J, Krivonos I, Ponsford JL (2017) Behaviours of concern following moderate to severe traumatic brain injury in individuals living in the community. Brain Injury 31(10), 1312-1319.
| Crossref | Google Scholar | PubMed |

Hoepner JK, Yingst H, Harder B, Zehm C (2022) “I never thought I would be an international speaker … but I am”: an interpretive qualitative analysis of experiences of a project-based advocacy intervention. Neuropsychological Rehabilitation 32, 2077-2101.
| Crossref | Google Scholar | PubMed |

Holth K, Gould KR, Hicks AJ, Analytis P, Feeney TJ, Ponsford JL (2022) “I’ve never been positive … I am now”: participant perspectives of a Positive Behaviour Support intervention (PBS+PLUS) for community-living individuals with ABI and their close others. Neuropsychological Rehabilitation 32, 2411-2428.
| Crossref | Google Scholar | PubMed |

LaVigna G, Willis T (2005) A Positive Behavioural Support Model for Breaking the Barriers to Social and Community Inclusion. Tizard Learning Disability Review 10(2), 16-23.
| Crossref | Google Scholar |

LaVigna GW, Willis TJ (2012) The efficacy of positive behavioural support with the most challenging behaviour: the evidence and its implications. Journal of Intellectual & Developmental Disability 37, 185-195.
| Crossref | Google Scholar | PubMed |

Layton N, Bould E, Buchanan R, Bredin J, Callaway L (2022) Inclusive Research in Health, Rehabilitation and Assistive Technology: Beyond the Binary of the ‘Researcher’ and the ‘Researched’. Social Sciences 11(6), 233.
| Crossref | Google Scholar |

Madill A, Jordan A, Shirley C (2000) Objectivity and reliability in qualitative analysis: realist, contextualist and radical constructionist epistemologies. British Journal of Psychology 91(1), 1-20.
| Crossref | Google Scholar | PubMed |

Maher LM, Hayward B, Hayward P, Walsh C (2017) Increasing patient engagement in healthcare service design: a qualitative evaluation of a co-design programme in New Zealand. Patient Experience Journal 4(1), 23-32.
| Crossref | Google Scholar |

Mäkelä P, Jones F, de Sousa de Abreu MI, Hollinshead L, Ling J (2019) Supporting self-management after traumatic brain injury: codesign and evaluation of a new intervention across a trauma pathway. Health Expectations 22(4), 632-642.
| Crossref | Google Scholar | PubMed |

Manafò E, Petermann L, Vandall-Walker V, Mason-Lai P (2018) Patient and public engagement in priority setting: a systematic rapid review of the literature. PLoS One 13(3), e0193579.
| Crossref | Google Scholar | PubMed |

Meyers DC, Durlak JA, Wandersman A (2012) The Quality Implementation Framework: A Synthesis of Critical Steps in the Implementation Process. American Journal of Community Psychology 50(3–4), 462-480.
| Crossref | Google Scholar | PubMed |

Ponsford J, Schönberger M (2010) Long-term family functioning following traumatic brain injury. Journal of the International Neuropsychological Society 16, 1-2.
| Google Scholar |

Ponsford JL, Downing MG, Olver J, Ponsford M, Acher R, Carty M, Spitz G (2014) Longitudinal Follow-Up of Patients with Traumatic Brain Injury: Outcome at Two, Five, and Ten Years Post-Injury. Journal of Neurotrauma 31(1), 64-77.
| Crossref | Google Scholar | PubMed |

Ponsford JL, Hicks AJ, Gould KR, Downing MG, Hopwood M, Feeney TJ (2022) Positive behaviour support for adults with acquired brain injury and challenging behaviour: a randomised controlled trial. Annals of Physical and Rehabilitation Medicine 65(2), 101604.
| Crossref | Google Scholar | PubMed |

Sabaz M, Simpson GK, Walker AJ, Rogers JM, Gillis I, Strettles B (2014) Prevalence, Comorbidities, and Correlates of Challenging Behavior Among Community-Dwelling Adults With Severe Traumatic Brain Injury: A Multicenter Study. The Journal of Head Trauma Rehabilitation 29(2), E19-E30.
| Crossref | Google Scholar | PubMed |

Slattery P, Saeri AK, Bragge P (2020) Research co-design in health: a rapid overview of reviews. Health Research Policy and Systems 18(1), 17.
| Crossref | Google Scholar | PubMed |

Steen M, Manschot M, Koning ND (2011) Benefits of Co-design in Service Design Projects. International Journal of Design 5(2), 53-60.
| Google Scholar |

Tam S, McKay A, Sloan S, Ponsford J (2015) The experience of challenging behaviours following severe TBI: a family perspective. Brain Injury 29(7–8), 813-821.
| Crossref | Google Scholar | PubMed |

Tateno A, Jorge RE, Robinson RG (2003) Clinical Correlates of Aggressive Behavior After Traumatic Brain Injury. The Journal of Neuropsychiatry and Clinical Neurosciences 15(2), 155-160.
| Crossref | Google Scholar | PubMed |

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6), 349-357.
| Crossref | Google Scholar | PubMed |

Varpio L, Ajjawi R, Monrouxe LV, O’Brien BC, Rees CE (2017) Shedding the cobra effect: problematising thematic emergence, triangulation, saturation and member checking. Medical Education 51(1), 40-50.
| Crossref | Google Scholar | PubMed |

Wong D, Mckay A, Stolwyk R (2014) Delivery of Psychological Interventions by Clinical Neuropsychologists: Current Practice in Australia and Implications for Training. Australian Psychologist 49(4), 209-222.
| Crossref | Google Scholar |

Ylvisaker M, Feeney T, Capo M (2007) Long-Term Community Supports for Individuals With Co-Occurring Disabilities After Traumatic Brain Injury: Cost Effectiveness and Project-Based Intervention. Brain Impairment 8, 276-292.
| Crossref | Google Scholar |

Zamenopoulos T, Alexiou K (2018) ‘Co-design as collaborative research’. Connected Communities Foundation Series. (Bristol University/AHRC Connected Communities Programme: Bristol, UK)