Life after stroke: ‘a life I like’ and ‘a life to live’.

Abstract

This doctoral thesis describes, critically evaluates and reflects on the development and evaluation of an innovative approach to supporting individuals after a stroke. This approach consists of; a once-weekly, twelve week, stroke self-management programme consisting of interactive information provision, rehabilitation and exercise in an environment of peer and caregiver support called ‘ASPIRE’ – an acronym for Acute stroke, Self-management support, secondary Prevention, Information, Rehabilitation and Exercise. The development of the ASPIRE programme was influenced by interviews with those involved in the ASPIRE programme and the process and results of a primary research evaluation using mixed methods. The aim of this two phase evaluation was to 1) identify participants’ views as to the outcomes of attending the ASPIRE programme, using a grounded theory approach and 2) identify whether those outcomes could be assessed using currently existing standardised validated tools. Three key themes were identified; A life I like – the confidence to do the everyday activities important to a person after a stroke; Changing hearts and minds – the confidence, knowledge and health behaviour change to reduce vascular risk after stroke and In the same boat – the benefits of peer support for stroke survivors and caregivers. These themes were used to select relevant standardised validated tools; the Stroke Knowledge Test (SKT), Stroke Self Efficacy Questionnaire (SSEQ), Cerebrovascular Attitudes and Beliefs Scale (CABS-R), Hospital Anxiety and Depression Scale (HADS) and Caregiver Strain Index (CSI). Statistically significant gains were identified in the SKT and HADS – depression score. The tools were useful and sensitive to change; however, the SSEQ had a ceiling effect with this cohort and the CABS-R was found difficult to use. Although existing outcome tools may not adequately measure new multi-factorial post-stroke interventions such as the ASPIRE programme, the unique contributions of this doctoral thesis to the body of knowledge are that; • An enabling culture, that includes peer support for stroke survivors and caregivers, helps individuals to move forward after stroke. • Support for self-generated goal planning, based on a ‘life-thread’ approach, may improve outcomes from stroke survivors’ perspectives. • Supporting individuals to develop the confidence, knowledge and health behaviours to reduce vascular risk can be an integral and complementary part of rehabilitation after stroke. A multi-factorial programme to enable life after stroke should therefore include both rehabilitation “A life I like” and secondary prevention “A life to live”. • Individually tailored exercise programmes to support rehabilitation and secondary prevention can be used with groups of stroke survivors with a wide range of deficits.