Experiences of an Exercise Referral Scheme from the perspective of people with chronic stroke: a qualitative study Mrs Helen Sharma Dr Frederike van Wijck Dr Cathy Bulley

Background > 900,000 people living with stroke in UK 1 Estimated cost to economy > £7 billion 2 Personal cost 3 Short-term targeted exercise interventions improve mood 4, fitness, strength, gait, balance 5, social participation 6 Patient experience important Exercise Referral Schemes and stroke??

Research Aim To explore the experiences of an Exercise Referral Scheme from the perspective of people with chronic stroke Guide scheme development Basis for understanding exercise behaviour after stroke

Methodology – Study Design Qualitative  Because experiences cannot be expressed in standardised units of measurement Constructivist  Assuming no single ‘truth’ exists Interpretivist  Focus on individuals’ values and meanings Semi-structured, one-to-one interviews  Enabled individual focus and depth of data

Methodology - Sample INCLUSION 1° diagnosis of stroke Attended ERS from Aug ‘04 to Aug ’06 EXCLUSION Unable to engage with researcher Voice not clear on audiotape Examine patient records Send recruitment letters Signed consent form Telephone screen ?interview feasible

Methodology - Rigour ISSUEEXAMPLE ACTIONS Credibility (Internal validity) Audiotape and transcribe interviews verbatim Verify accuracy of interpretation via respondent validation Transferability (External validity) Detailed description of participants and setting Dependability (Reliability) Peer checking Neutrality (Objectivity) Reflexivity – pilot interview; field journal

Methodology – Data Analysis Data immersion Coding Categories Master theme Reading transcripts +++ Extracting demographics, labelling subjects, considering meaning, questioning and exploring relationships within text Collections of relationships united by central idea Overarching theme illustrated by several categories

Results Participants: n = 9 Gender: 5 male, 4 female Age range: 37-61, mean 51 Time post-stroke: 1-4 years Ethnicity: 5 white British, 4 black African Affected hemisphere: 5 right, 4 left

Results RAW DATA CATEGORY 1 Exercise engagement CATEGORY 2 Control CATEGORY 3 Improvement CATEGORY 4 Confidence ERS was understood as a pivotal stage in regaining independence after stroke Personal developments in 4 key areas contributed towards increased independence MASTER THEME One small step on the treadmill … one giant leap towards independence

Category 1 – Exercise Engagement Attendance at ERS signalled more active behavioural choices Active choices were associated with feelings of normality and independence

Data: Category 1 More active behavioural choices: ‘Before I started going [to the ERS], I wasn’t thinking about exercise, and I wasn’t thinking about anything, other than sit at home, eat and watch television. When I started, at least they gave me that ability, they gave me that push … So thereafter, I just cook up something in my head, go down the stairs or go down the street.’

Category 2 - Control Pre-ERS: Physiotherapist God Consultant Health Service At, and after ERS: ‘Motivation’ ‘Willpower’ ‘Self-determination’ There was an apparent shift in the reasons participants gave for their physical improvement, increased function and independence:

Category 3 - Improvement Improvements over time: Fitness, strength, movement Immediate improvements in mood Importance of improvement to participants was ‘getting better’ from the stroke Getting better linked to positive feelings of happiness and enjoyment

Data: Category 3 Mood improvement, ‘getting better’ and positive feelings: ‘When I finish exercising and I feel so good, so content… By the end of the day you feel good, you know, you say ‘I feel good, my health is coming back’ in your head.’

Category 4 - Confidence Individuals reported increased confidence with attendance at ERS Attributed specifically to the influence of the physiotherapist and the group Confidence was associated with regaining independence because it appeared to carry over into situations outside ERS

Data - Category 4 Confidence and carry over: ‘I started work and I was able to start where I left off…if I had not gone through this I would not have had the confidence in front of all those people. It is not the medication that has made me better, it is the exercise’

Was it all a bed of roses? Barriers to attending:  Gym threatening environment – younger participants particularly self-conscious  Low task-specific confidence e.g. being able to do stairs/ get on bus to get to gym

Discussion and Conclusion ERS was experienced as a pivotal stage in regaining independence after stroke ERS is supported as a method of targeted rehabilitation for people with chronic stroke Service evaluation: Review outcome measures; user views essential Future work: Overcoming barriers to exercise; exercise adherence; long-term exercise participation

References [1] DOH. National Stroke Strategy. London: Department of Health;2007 [2] Saka RO, McGuire A, Wolfe CDA. Economic burden of stroke in England. London: University of London; 2003 [3] Royal College of Physicians Clinical Effectiveness and Evaluation Unit. National clinical guidelines for stroke. 2nd ed. London: Royal College of Physicians; 2004 [4] Lai SM, Studenski S, Richards L, Perera S, Reker D Rigler S, Duncan P. Therapeutic exercise and depressive symptoms after stroke. J Am Geriatr Soc 2006; 54: [5] Marigold DS, Eng JJ, Dawson AS, Ingis JT, Harris JE, Gylfadottir S. Exercise leads to faster postural reflexes, improved balance and mobility, and fewer falls in older persons with chronic stroke. J Am Geriatr Soc 2005; 53: [6] Studenski S, Duncan P, Perera S, Reker D, Lai SM, Richards L. Daily functioning and quality of life in a randomised controlled trial of therapeutic exercise for subacute stroke survivors. Stroke 2005; 36: