Health professional and family perceptions of post-stroke information

Introduction and BackgroundThe global burden of stroke is increasing. Despite a decrease over the past twenty years in stroke mortality rates there is an increase in terms of the absolute number of people affected every year (Feigin et al., 2014). There are an estimated 60,000 stroke survivors in New Zealand, many of whom live with impairment and need significant daily support (Stroke Foundation of New Zealand, 2015). Stroke can have negative consequences on the health, wellbeing and quality of life of both the stroke survivor and their extended family (Ellis, Grubaugh, & Egede, 2013; Yu, Hu, Efird, & McCoy, 2013). Care and support needs are variable, can be complex and are dependent on the severity, origin and location of the cerebral trauma, the timeperiod post-stroke, socioeconomic variables and ethnicity (Cecil, Thompson, Parahoo, & McCaughan, 2013; Harwood et al., 2012a, 2012b; Moloczij, 2009). Nurses play a pivotal role in stroke care and management across all phases of the stroke trajectory and, along with other health professionals, can help alleviate the stresses experienced by families caring for their whanau member who is a stroke survivor (Cecil et al., 2013). There is strong evidence for the efficacy of a co-ordinated multidisciplinary team (MDT) approach to stroke care (Clarke, 2013). Core members of a MDT in stroke care include nurses (often stroke nurse specialists), stroke physicians, physiotherapists (PTs), occupational therapist (OTs), speech language therapists (SLTs) and therapy assistants (trained to support PTs and OTs). Multidisciplinary teams may also include social workers, needs assessors, and community-based support workers such as the Community Stroke Advisors (CSAs) from the Stroke Foundation of New Zealand. Trained CSAs assist stroke survivors and their families with any stroke-related problems. They make hospital and home visits, support families and can advise on accessing carer-relief services and funding. Some MDTs include stroke cocoordinators (usually a nurse, PT or OT) within the team whose role is to co-ordinate in-patient rehabilitation and services for patients and their families post-stroke. At the participating DHB for this study these stroke coordinators are known as key workers.The importa nee of information and education provision, alongside the right support, for stroke survivors and their families is well documented (Cameron & Gignac, 2008; Cameron, Naglie, Silver, & Gignac, 2013; Draper & Brocklehurst, 2007; Eames, Hoffmann, Worrall, & Read, 2010; Larson et al., 2005; Temize & Gozum, 2012; Wallengren, Segesten, & Friberg, 2010; Wright et al., 2012). A recent Cochrane review (Forster et al., 2012) showed that information provision for stroke survivors and families improved their knowledge of stroke and aspects of patient satisfaction. A reduction In depression scores was also noted. Three Cochrane reviews (Forster et al., 2012; Forster et al., 2001; Smith, Forster, & Young, 2009) have concluded that while there is evidence that the provision of information is beneficial "the best way to provide information is still not clear" (Forster et al., 2012, p. 16).Despite what is known about information provision post-stroke, stroke survivors and their families continue to report a lack of knowledge and difficulty In accessing it (Perry & Middleton, 2011) and feel unprepared for the scope and scale of life changes and life after discharge from hospital (Forster et al., 2012; Perry & Middleton, 2011).Research DesignAimThe mixed methods descriptive survey was to ascertain information and education needs of families of those who experience a stroke (stroke survivors) through identifying current practice and resources, and the appropriateness, accessibility, method of delivery, timeliness and gaps in education and information giving. Specifically, we wanted to know:What information and resources were provided to/received by families across the care continuum? …