ATRAS: WP3 Understanding barriers and facilitators to acceptance of ATs Jane Burridge, Caroline Ellis-Hill, Ann-Marie Hughes,Sara Demain and Lucy Yardley

Exhibition of upper limb technologies for rehabilitation exhibition 2009 7th October from 10:30 for healthcare professionals 8-9th October for patients and carers At Building 45, University of Southampton Buffet lunch provided

WP3 team Caroline Ellis-Hill Lucy Yardley Ann-Marie Hughes Sara Demain Jane Burridge

Introduction to WP3 Investigation into the users’ views on ATs Barriers to ATs from users’ perspective Interactive Exhibition – plans Focus groups Questionnaire Field studies

WP 3 - Objectives To explore: ►Participants’ perceptions of how AT addresses their needs ►Participants’ perceptions of the barriers to using ATs ►Positive and negative aspects of including ATs within a clinical service

Purpose To inform the decision about what ATs are tested in the RCT To inform the design of the RCT Information will be added to the systematic review so that the choice is made on: Clinical evidence Users’ views Critical issue – how is the information generated from WP3 integrated into the decision making process

Study Methods 1) Qualitative design (geographic boundaries) Interactive exhibition recruit for focus groups Focus groups inform questionnaire study 2) Quantitative questionnaire study (national) - Provide data on acceptability of ATs in service provision Inform design of the clinical trials 3) Usability field trials Qualitative (observation and interview) Quantitative (questionnaire)

Qualitative design Interactive Exhibition Focus groups (6-8) – purposive sampling Patients Carers MD healthcare professionals Managers, budget holders and commissioners End effector – exoskeletal Reviews: Prange (8 prox upper limb), Teasell (20 upper limb) , Mehrholz (11 RCTs electromechanical and robot-assisted arm training for recovery of arm function with other rehabilitation interventions or no treatment for patients (sub acute to chronic) and Kwakkel (10 RCTs upper limb) Limitations (wide variety of outcome measures used and weak methodologies (Prange et al, 2006; Teasell, Foley et al, 2007); variations between the trials in the duration, amount of training and type of treatment and in the patient characteristics (Mehrholz, Platz et al, 2008)) Advantages: therapist Fulfilling the motor learning requirements, robots can provide patients with: intense movement practice; continuous feedback and games (which if not functional tasks, may be motivating or entertaining); a degree of independence during therapy; and a record of progress. The advantages for therapists are that robots are both objective assessment and intervention tools. As with most technologies, there will be a number of barriers to their use which may include: cost; ease of accessibility; location for storage; a limited evidence base; acceptability and usability issues. User perceptions - patients (Coote & Stokes, 2003 (8 patients 6 physio simulating); Krebs et al, 1998 (20)), or therapists (Lee et al, 2005 or both (Doornebosch et al, 2007 (10 sub acute +? therapists)) Robot assisted therapy is well accepted and tolerated by the therapist Common limitations with existing surveys include: lack of clarity on question development; questionnaires were often administered by treating therapists; questions or statements used are not always published; psychometric properties of the questionnaires are not established; and frequently no clear tables of results are published.

Questionnaire Designed, piloted, revised, piloted, final version Target Audience: Patients and Carers (150-200), MD healthcare professionals (75-100), Managers, budget holders and commissioners (30-60) Method: phone, email (Website), paper Advertised: UK stroke units, rehab centres, stroke clubs and GP practices End effector – exoskeletal Reviews: Prange (8 prox upper limb), Teasell (20 upper limb) , Mehrholz (11 RCTs electromechanical and robot-assisted arm training for recovery of arm function with other rehabilitation interventions or no treatment for patients (sub acute to chronic) and Kwakkel (10 RCTs upper limb) Limitations (wide variety of outcome measures used and weak methodologies (Prange et al, 2006; Teasell, Foley et al, 2007); variations between the trials in the duration, amount of training and type of treatment and in the patient characteristics (Mehrholz, Platz et al, 2008)) Advantages: therapist Fulfilling the motor learning requirements, robots can provide patients with: intense movement practice; continuous feedback and games (which if not functional tasks, may be motivating or entertaining); a degree of independence during therapy; and a record of progress. The advantages for therapists are that robots are both objective assessment and intervention tools. As with most technologies, there will be a number of barriers to their use which may include: cost; ease of accessibility; location for storage; a limited evidence base; acceptability and usability issues. User perceptions - patients (Coote & Stokes, 2003 (8 patients 6 physio simulating); Krebs et al, 1998 (20)), or therapists (Lee et al, 2005 or both (Doornebosch et al, 2007 (10 sub acute +? therapists)) Robot assisted therapy is well accepted and tolerated by the therapist Common limitations with existing surveys include: lack of clarity on question development; questionnaires were often administered by treating therapists; questions or statements used are not always published; psychometric properties of the questionnaires are not established; and frequently no clear tables of results are published.

Questionnaire analysis Generate quantitative data concerning the issues identified in the qualitative study Analysis will aim to indicate critical factors in the RCT design generated from the classes of responders: Patients and carers (e.g. where the intervention should take place, how long each day is reasonable to ‘practice’) Healthcare professionals (e.g. time post-stroke of intervention, selection of patients, training / ease of application) Managers / Budget holders (e.g. cost/patient)

Usability field trials Evaluate ATs from patient and clinician perspective Qualitative interview (n=12) Questionnaire developed, piloted and trialled at the end of clinical trial Video of patients using technology Patient diaries End effector – exoskeletal Reviews: Prange (8 prox upper limb), Teasell (20 upper limb) , Mehrholz (11 RCTs electromechanical and robot-assisted arm training for recovery of arm function with other rehabilitation interventions or no treatment for patients (sub acute to chronic) and Kwakkel (10 RCTs upper limb) Limitations (wide variety of outcome measures used and weak methodologies (Prange et al, 2006; Teasell, Foley et al, 2007); variations between the trials in the duration, amount of training and type of treatment and in the patient characteristics (Mehrholz, Platz et al, 2008)) Advantages: therapist Fulfilling the motor learning requirements, robots can provide patients with: intense movement practice; continuous feedback and games (which if not functional tasks, may be motivating or entertaining); a degree of independence during therapy; and a record of progress. The advantages for therapists are that robots are both objective assessment and intervention tools. As with most technologies, there will be a number of barriers to their use which may include: cost; ease of accessibility; location for storage; a limited evidence base; acceptability and usability issues. User perceptions - patients (Coote & Stokes, 2003 (8 patients 6 physio simulating); Krebs et al, 1998 (20)), or therapists (Lee et al, 2005 or both (Doornebosch et al, 2007 (10 sub acute +? therapists)) Robot assisted therapy is well accepted and tolerated by the therapist Common limitations with existing surveys include: lack of clarity on question development; questionnaires were often administered by treating therapists; questions or statements used are not always published; psychometric properties of the questionnaires are not established; and frequently no clear tables of results are published.

Qualitative component of the Clinical Trial Interviews – patients and clinicians using AT Observation – videos record of people using AT Participant Diaries – document usage and problems Data → Questionnaire design Sent to all trial participants at end of study

WP3 Gantt chart Interaction Exhibition Oct 7-9

How the output of WP3 will be used to inform the trial design Transforming textual data into metrics Done partly but not wholly by the questionnaire Identifying the bottle-necks e.g. comfort of ATs, ease of wear, cosmetic etc. It might be important for to consider these factors in the specific choice of ATs evaluated in the trial e.g. robots are great but in a gym or own home -if this was identified the trial design would need to consider how the intervention was monitored Softer issues e.g. patients love it but therapists unconvinced. This would indicate a need for a culture change among therapists and would need to be considered / addressed prior to the clinical trial Bottom line – until we gather the data we cannot identify the critical factors relating to users’ perceptions and preferences

Qualitative research – a quick introduction Quantitative research material reality physical properties measurable Qualitative research social reality concepts, ideas, beliefs not measurable

Qualitative research – a quick introduction Understanding meanings Meaning of objects or events is as important as the ‘facts’ of the event because meaning influences thoughts and actions Subjective meanings therefore affect the material world Talk to people and observe their actions

Focus groups “a way of collecting qualitative data, by engaging a small number of people in an informal group discussion, focussed on a particular topic or set of issues” (Wilkinson, 2003)

Focus groups Facilitated by researcher - flexible topic schedule Group dynamics important participants asking questions of each other, seeking clarification from each other, probing for greater depth (Finch and Lewis, 2003) Analysis identify key themes and concepts understand how these relate to each other and the topic under investigation

Purposive Sampling – Quantitative research Aim: generalise to whole populations Strategy: select statistically representative sample of people/objects/events Sample: matches proportions in population Qualitative research Aim: understand phenomenon Strategy: select people/objects/events from whom we can learn the most Sample: people/objects/events with a range of experiences and opinions. Deliberately try and include outlying views and people with expertise.

Purposive sampling Example Focus group 1 – People who have had a stroke Have/have not used AT Different genders Levels of ability Time since stroke Age groups

Purposive sampling Example Focus group 1 – Health care professionals Which professionals? Different levels expertise? Experts in one or other form UL AT?

Analysis - thematic Identifying themes and relationships between them Purpose: Understand phenomenon inductively (→ publications) Questionnaire validity Content: what questions we ask Language: using the precise terms used by focus group participants

Focus group formats People with stroke x 2 Existing/previous users of AT Those who have never used an AT Carers/family of people with stroke (naïve and experienced) Coal-face health professionals (therapists, medics, engineers) Managers/Budget holders (different professions) Commissioners Option for interviews if necessary People with cognitive/language deficits