Design and evaluation of a post-discharge education and support package for stroke clients and their carers

Numerous clinical guidelines acknowledge the provision of information to clients and their carers as a crucial component of post-stroke care (Intercollegiate Stroke Working Party, 2004; National Stroke Foundation, 2010a). The Cochrane review of stroke information provision found that information can improve stroke client and carer knowledge, reduce client depression, and increase some aspects of client satisfaction (Smith et al., 2008). It is clear that clients and their carers need and want more information following a stroke (Hanger, Walker, Paterson, McBride, & Sainsbury, 1998; O'Mahony, Rodgers, Thomson, Dobson, & James, 1997), but the most effective ways for health professionals to provide this is less clear. The aim of this thesis was to design, and then evaluate an education and support package for clients with stroke and their carers, building on previous research into tailored written stroke information (Hoffmann, McKenna, Worrall, & Read, 2007). The thesis starts with a review of the literature, presenting current practice and recommendations for the content, format, delivery style and timing of stroke information provision. This is followed by Study 1, which was a survey of community services (n=57) available to clients with stroke and their carers that aimed to identify the way in which these services provide stroke information. The research questions for Study 1 were: 1. What content, format, delivery style and timing are currently being used to educate and support community-based stroke clients and carers? 2. What post-discharge supports and educational opportunities exist for stroke clients and carers? This study found that services provided information to clients and carers using a range of formats and delivery styles, and that areas for improvement included: the provision of secondary prevention information; appropriate design, and use, of written material; and provision of opportunities to reinforce stroke information. Study 2 surveyed clients with stroke (n=27) and their carers (n=17) prior to, and 3 months following, acute stroke unit discharge. The survey explored clients’ and carers’ content, format and delivery style preferences for receiving information. The three research questions for Study 2 were: 1. What are stroke clients’ and carers’ preferences for information prior to, and 3 months following, acute stroke unit discharge, specifically content, format, delivery style and timing? 2. What do clients and carers perceive as barriers to accessing stroke information, prior to, and 3 months following, acute stroke unit discharge? 3. What are stroke clients’ awareness of stroke risk factors and readiness to modify behaviour related to these, prior to, and 3 months following, acute stroke unit discharge? Results indicated that clients and carers preferred a combination of face-to-face, written and telephone formats, and a mix of active and passive delivery styles. Client and carers also described barriers to the process of stroke information provision including: the limited availability of information; hospital-related barriers; and client- and carer-related barriers. Finally, one third of clients could not spontaneously nominate one or more stroke risk factors and there were no statistically significant changes in performance of stroke risk-related behaviours between discharge and 3 months following discharge. The results of these two studies were combined with recommendations from the literature to design an education and support package. The package consisted of tailored written information and verbal reinforcement provided face-to-face prior to acute stroke unit discharge and via telephone contact for 3 months following discharge. Its provision to clients with stroke and their carers was compared against usual acute stroke unit care in a single-blind, multi-site randomised controlled trial with 119 participants. The research questions for Study 3 were: 1. Does a tailored education and support package improve the knowledge, health and psychosocial outcomes of stroke clients and carers? 2. What demographic and clinical characteristics are associated with stroke knowledge? Outcome measures were assessed just prior to acute stroke unit discharge and 3 months following discharge, and included measures of stroke knowledge, self-efficacy, anxiety and depression, client quality of life, caregiver burden, satisfaction with information received and a rating of feeling informed. Clients’ awareness of risk factors and risk-related behaviour change were also assessed and multilevel modeling was undertaken to address the second of Study 3’s research questions. At follow-up, participants in the intervention group had significantly better: stroke knowledge (p=0.013); self-efficacy for accessing information (p=0.013); and satisfaction with medical (