Enhancing Rehabilitation Participation for People with Brain Injuries

Observational data: The study will begin with a stage of data collection, associated with baseline (or initial) information gathering. This will involve researchers observing (watching) the behaviours of consented participants (individuals with brain injury and/or care or support people) and recording behaviours (e.g., indices of happiness and unhappiness, choice behaviour, vocal verbal responses) using pen and paper methods or unobtrusive technology (i.e., through the use of an iPad or similar) at various times. No specific actions will be required of participants at this stage. Baseline observational data will be collected during 20 minute periods at different times of the day across a one to week period to capture the majority of behaviours, Assessment (1): This stage will involve gathering information by asking informants (participants who support an individual with a brain injury, including whanau and/or staff) to comment on the person's engagement with rehabilitation. This will be achieved through a short (no longer than 20 minutes) interview (modality may vary depending on the preference of the research team and participants, i.e., online, in person, pen and paper survey). Assessment (2): This stage will involve brief assessments where the research team modifies rehabilitation activities in response to participant behaviour (e.g., such as adding access to reassurance upon refusal to engage) and measures any change to behaviours of interest after the change. The purpose of this assessment is to identify possible reasons why the person does / does not engage with their rehabilitation activities. The assessments will comprise multiple sessions lasting no longer than 20 minutes, and have structured protocols and ending-session criteria to protect participants and to minimise disturbance of their time. The session-ending criteria will be yoked to the rehabilitation activity involved (e.g., physiotherapy session finishing) or will be a maximum of 20 min. A session may also be ended if behaviours of discomfort in the participant are observed. These will be determined in advance with each participant and their support people (e.g., walking away from the area, verbal aggression). This phase will occur after the completion of Assessment 1. Data-based decision making will be used, which means that the specific number of sessions and total duration will vary individual-by-individual. The predicted number of sessions is 3 to 20 per participant. Intervention (1): This element of the research will involve using information (gathered using methods listed above) to identify likely effective and best-practice intervention approaches that are matched to engagement and are minimally intrusive/promote quality of life. This stage will involve working with individuals with brain injury. These interventions will be yoked to data analysis, and so cannot be explicitly stated at this stage of the project, but may include: enriching the participant's lived environment, providing participants with choice of activities, providing memory aids or other environmental prostheses, and other empirically-supported evidence-based treatments common in behaviour-analytic intervention. Data collection through observation will continue at this stage. The changes implemented will be selected by the CI, using their clinical judgement and the data collected in the assessment phases (i.e., based on participant preferences, mobility, any medical contraindications, feasibility, available resource). Proposed changes will be presented to the organisation (i.e., their multi-disciplinary team) for their approval prior to implementation and to provide an additional check for safety and feasibility (for example, we will not suggest a change in location for a participant whose mobility would make it unsafe to move them to another room in the space). The changes will be implemented by the CI (registered psychologist), supporting staff (e.g., occupational therapists, rehabilitation assistants), and other members of the research team. A researcher will interact with an individual participant in a shared space where other patients with brain injury may be present, or in private quarters (depending on the change to be implemented). Sessions will be between 10 and 20-min in duration, implemented up to five times per week for up to 2 months. This stage will be implemented upon completion of the assessment phases. Examples of potential changes include: • Embedding rehabilitation tasks (e.g., physical stretches) in preferred leisure activities (e.g., a sport) • Embedding choice in and between tasks to give people a sense of control and autonomy • Altering the way an invitation to participate in a rehabilitation task is framed or presented • Providing bespoke ways for the person to track their progress or track their scheduled tasks A second observer will be present in approximately 30% of sessions to record treatment integrity data. Intervention (2): This step of the study involves teaching and supporting consented care and support staff to modify the approaches they use when interacting with individuals they support to increase participation in rehabilitation activities. Again, the specific intervention technologies will be tied to baseline data and specific to each participant, but may include the use of behavioural skills training (such as didactic instruction, modelling, rehearsal and feedback). Data will be collected at this stage through observation of consented participant behaviour (that of care support people and individuals with brain injury). The teaching and support will be delivered by the research team and will include both analogue and in-situ components (i.e., in training rooms and during interactions with participants with a brain injury). This stage will be implemented upon completion of Intervention 1. Sessions will be between 10 and 30-min in duration and will be delivered up to 3 times per week for up to a month. A second observer will be present in approximately 30% of sessions to record treatment integrity data. Social validity: The perspectives and opinions of consented whanau, care and support people will be recorded using informant methods (as described in Assessment: 1). Care will be taken to minimise the response time and effort required for this task. Data will be analysed using quantitative and qualitative methods. Consented individuals with brain injury may also be asked to provide their perspectives of participation through a modified tool, aligned with the cognitive skills of participants and in line with participant preference. The overall duration of the project for each participant is 6 months from enrolment to completion of final sessions.