Abstract
This
study investigated the environment’s role in community reintegration
amongst persons with experience of stroke. Focus group discussions with
29 individuals recruited from community stroke clubs in Scotland
revealed that stroke influenced a person’s perceptions, experience, use
and enjoyment of the environment. Multiple specific (e.g. theatres,
cafes) and more general (out-of-the-home) environments appeared capable
of supporting community reintegration, providing settings in which
individuals were able and willing to interact with others and
participate in various functional, social and recreational activities.
The article reflects on the study’s implications for policy and
practice.
Points of interest
| • | Community reintegration post stroke may be supported by multiple specific (e.g. theatres, parks, the home) and more general (out-of-the-home) environments. | ||||
| • | These can provide settings in which individuals are motivated to interact with others and participate in various functional, social and recreational activities. | ||||
| • | Stroke can have a profound impact on an individual’s perceptions, experience, use and enjoyment of the environment. | ||||
| • | Peer support is valued by, and may bring important benefits to, stroke survivors. | ||||
Introduction
There are over 1.2 million stoke survivors in the United Kingdom whilst every year some 152,000 strokes occur, equivalent to one every 3 minutes 27 seconds (Stroke Association 2016). The prevalence of stroke increased by 12.5% between 1999 and 2008, whilst the incidence of stroke fell by approximately 30% (Lee, Shafe, and Cowie 2011). Improved drug treatment in primary care is likely to be a major contributor to the latter (Lee, Shafe, and Cowie 2011, 1). Our ageing population (Mayo et al. 2002), with age being the single most important risk factor for stroke (Stroke Association 2016), combined with developments in acute stroke management and rehabilitation, leading to reduced stroke mortality (Lee, Shafe, and Cowie 2011), mean that an increasing number of people with stroke are now returning to the community (Wood, Connelly, and Maly 2010).In the context of stroke, community reintegration can be defined as a person’s return to everyday functional activities, instrumental activities of daily living, recreational and social activities, and interactions with family members and others (Pang, Eng, and Miller 2007). It is, therefore, a relatively broad concept concerned with participation in various life domains. We focus here on community reintegration because evidence suggests it captures processes which are important to stroke survivors (although no judgement is passed on whether or why these processes should be considered important) (Bergström et al. 2015; Wood, Connelly, and Maly 2010). That poor community reintegration has been associated with depression, social isolation, a poor quality of life (Wood, Connelly, and Maly 2010) and reduced life satisfaction (Astrom, Asplund, and Astrom 1992) underlines its importance.
Community reintegration is, of course, neither an unproblematic nor an uncontested concept (Myers et al. 1998; Mirza et al. 2008; van de Ven et al. 2005). Some, for instance, might take exception to its implicit support for ‘normalisation’, a concept concerned with how disabled people can ‘slot’ into ‘everyday living’ and lead an ‘ordinary life’ (King’s Fund Centre 1980, 1988). Popular in the 1980s, this concept has since been criticised for overlooking the social construction, and socially constructed meanings, of ‘disability’ and ‘normality’ (Chappell 1992); indeed, by not focusing on deconstructing the meanings attached to disability, writers from critical disability studies may argue that it misses that which should ground our approach to disability (Corker 1999; Vehmas and Watson 2014). It has also been accused of ignoring the material constraints that impact the lives of disabled people, problematizing rather than valuing difference, and requiring individuals to ‘fit in’ to an unchanged society rather than requiring a changed society to be ‘fit for’ the individual (Chappell 1992; Myers et al. 1998; Pothier and Devlin 2006; Vehmas and Watson 2014; Ward 1992).
Such concerns aside, given the apparent importance of community reintegration to stroke survivors it is troubling that so many find it difficult and challenging (Pang, Eng, and Miller 2007; Robison et al. 2009; Wood, Connelly, and Maly 2010). A study with 434 stroke survivors interviewed 6 months post stroke found that 39% reported a limitation in self-care (bathing, dressing, grooming and feeding), 20% reported difficulties in walking and negotiating stairs, 54% reported limitations with instrumental activities of daily living (e.g. housework, shopping and preparing a meal) and 65% reported restrictions in reintegration into community activities (e.g. social and recreational activities, moving around the community and having an important activity to fill the day) (Mayo et al. 2002). A study with 105 stroke survivors found that, between three and six months post stroke, 83% perceived restrictions in their participation in everyday occupations, defined as activities people need and want to do, such as household chores, work or work-related activities, travel, leisure and social activities (Bergström et al. 2015).
Suggestive of the status and influence of the medical model of disability (Brandon and Pritchard 2011; Schuelka 2015), studies have considered the role of various person-related factors in aiding and/or impeding community reintegration including physical function (Carter et al. 2000; Ostir et al. 2005), mental health (Carter et al. 2000), cognitive ability (Robison et al. 2009), self-efficacy (Pang, Eng, and Miller 2007) and self-awareness (Leung and Liu 2011). Certain factors external to the individual, including social and professional support, have also attracted a degree of attention (Chau et al. 2009; Ellis-Hill et al. 2009; Nicholson et al. 2013; Robison et al. 2009; Walsh et al. 2014). Compared with these factors, the physical environment – defined here as the objective and perceived qualities and characteristics of the physical settings in which individuals spend time (Van Van Cauwenberg et al. 2011) – although pertinent (Lord and Rochester 2005), appears critically understudied.
On the relevance of the physical environment, home modifications and equipment have been identified as valuable to stroke survivors (Gustafsson and Bootle 2013; Schulz et al. 2012) whilst returning to the familiar home environment is recognised as a key milestone in recovery and a major source of motivation (Wood, Connelly, and Maly 2010). Studies suggest that stroke survivors view the home as a safe place, an environment in which they feel comfortable and confident (Reed et al. 2012). However, within the home, narrow doorways, stairs, absent handrails, heavy doors and limited space have been found to complicate movement, with poorly designed baths, showers and toilets impeding washing and personal care (Brookfield et al. 2015; Reid 2004; Schulz et al. 2012). Outside the home, uneven surfaces and absent handrails have been found to contribute to trips and falls (Reid 2004) and/or a fear of falling (Robison et al. 2009). Either may slow a person’s walking pace (Lennon et al. 2013) and/or influence an individual’s willingness to go outside (Barnsley, McCluskey, and Middleton 2012; Lennon et al. 2013; Robison et al. 2009). Indeed, research suggests that stroke survivors can consciously adapt their participation in valued activities in response to perceived/experienced environmental limitations (Robison et al. 2009). Highlighted by several of these examples, where research has considered the physical environment, attention has often focused on how it might frustrate community reintegration.
Taking a different tack, in this study the physical environment was conceived as a potentially positive resource capable of supporting community reintegration by providing settings in which individuals can, perhaps are encouraged to, interact with others and undertake various functional, social and recreational activities. Several factors structured this conceptualisation. First, findings from non-stroke populations which suggest that certain environmental details are associated with participation in the community and everyday activities were noted. For example, proximity to recreational facilities has been linked to participation in recreational physical activity in older adults (Berke et al. 2006) whilst proximity to retail facilities has been linked to recreational walking (Michael et al. 2006).
Second, models of disability which, whilst diverse, share the view that the physical environment influences participation and the performance of everyday activities were considered. This included the biopsychosocial model of disability, which views disability as the outcome of an interactive relationship between intrinsic features of the human body and features of the external environment (Bickenbach 2012, S164–S165), and the social model, which understands disability as a form of social oppression produced by physical, social and economic factors/structures external to the individual (Tregaskis 2002).
Third, theories from environmental psychology which suggest that individuals are inclined to ‘approach’ – enter, explore, be satisfied with and interact with others within – ‘pleasing’ environments were considered (De Nisco and Warnaby 2014; Donovan et al. 1994; Mehrabian and Russell 1974; Vieira 2013). Additionally, research which suggests that stroke survivors limit their contact with environments/environmental factors experienced or perceived as ‘problematic’ was noted (Brookfield et al. 2015; Gustafsson and Bootle 2013; Robison et al. 2009).
Lastly, the conceptualisation was influenced by research from Barnsley, McCluskey, and Middleton (2012) which found that stroke survivors with ‘meaningful destinations’, places such as pubs, clubs and shopping centres that individuals wished to visit, were more likely to travel outdoors.
Set against this background, the research aimed to identify the environments/environmental factors enjoyed by persons with experience of stroke, whilst not presupposing that these would differ from those enjoyed by anyone else, in order to tease out qualitative insights into the environment’s role in community reintegration. A deeper understanding of the physical environment’s place in community reintegration may lead to the identification of new and effective ways to support stroke survivors to lead self-directed lives of their choosing in the community.