Our analysis suggests that the stroke recovery processes that these participants experienced did not encompass an empowerment processes. Rather, the findings highlighted participants’ disempowering experiences arising from inequalities in the healthcare system provision of stroke rehabilitation programs. Furthermore, a lack of collaboration and participation, essential for empowerment [20, 22] and teamwork [7, 12], between stroke survivors/ their informal caregivers and their healthcare providers was identified. There also appeared to be a lack of coordination between community resources, such as stroke recovery groups, and the healthcare system. However, our analysis also suggests that participants, by finding ways to achieve their goals through building social connections and advocating for their needs, became empowered.
This analysis identified the challenging need for stroke survivors to be empowered: that is, engage in empowerment related mechanisms such as self-help, self-efficacy, self-sufficiency, and collaboration and participation with others [20, 22, 23]. Our findings suggested that stroke survivors and caregivers may require certain characteristics or abilities in order to fulfill their needs. Characteristics included being strong-willed and determined with the ability to identify gaps in their care, seek information and knowledge, advocate, and persevere. Resilience and motivation, along with the cognitive ability to plan, organise, and initiate, are important factors for stroke recovery  and transitioning back into the community .
Our findings indicated that stroke survivors and caregivers sought knowledge and information, and in various ways had to assume responsibility for their care in their new situation. However, these behaviours were burdensome and related to expressions of disempowerment, hopelessness, and helplessness. Explicit expressions such as “I don’t feel empowered” and “you have to be [empowered]”, and implicit expressions of frustration, fear, guilt, and depression, along with a sense of the need to fight for services, should be considered disempowering since empowerment may also be understood by its absence [5, 20]. Absence of empowerment is found in individuals’ loss of control over their life or their perception of being powerless, hopeless, helpless, subordinate, alienated, dependant, victimised, or the object of paternalism [5, 20, 36]. Furthermore, descriptions of being “written off”, unsupportive conversations with health providers, and being told “this is as good as it gets” are interrelated with a sense of hopelessness, helplessness, and disempowerment.
(dis) empowerment and in-patient stroke rehabilitation
The disparate experiences of rehabilitation services identified in our findings suggest an inequitable healthcare system: one with apparently inflexible mechanisms which denied many stroke survivors and caregivers the holistic treatment and therapeutic support they needed. Equitable access to resources is inherent to the process of empowerment (5, 22). Stroke rehabilitation care is generally determined by medical, cognitive, and mobility factors [12, 17], severity of stroke , medical stability, nursing care requirement, therapy requirement, tolerable amount of activity , and age [9, 34]. Our analysis suggests limitations with these guidelines. For example, using age to determine rehabilitation needs may deny stroke survivors a preferred or optimal standard of care.
Also inherent to the process of empowerment are collaboration and participation in decision making [5, 22]. Rehabilitation outcomes are improved when individuals actively participate in decision making and engage in proactive behaviours [17, 22]. Contrarily, lack of involvement in rehabilitation decision processes may lead to stroke survivor and caregiver disempowerment and disengagement from the process of recovery . In our study, collaboration between health professionals, stroke survivors, and caregivers was not the norm. Rather, the findings mirror the literature [6, 8, 15, 18] and suggest that stroke survivors and caregivers were given little opportunity to participate in healthcare team decisions about rehabilitation therapy and recovery plans. This lack of engagement may have created a mismatch between stroke survivor/caregiver and healthcare provider goals or expectations for recovery. Typically, health providers’ goals for rehabilitation are for stroke survivors to be able to undertake basic activities of daily living . These goals are often at odds with stroke survivors’ and caregivers’ desire for a return to pre-stroke activities [11, 13, 17]. Rehabilitation structures that do not foster equitable treatment and therapy inhibit opportunities for good holistic care , and are unlikely to support development of skills associated with empowerment .
Stroke rehabilitation in the community: the interface between empowerment and disempowerment
Lack of collaborative healthcare system support and inequities in rehabilitation structures were exacerbated following discharge into the community. Mirrored in the literature [6, 18, 35] healthcare system support for the stroke survivors and caregivers in our study was limited, lacked consistency, and was perceived as inadequate, unhelpful, and stressful. In addition, stroke survivor socioeconomic variation had significant implications for equitable access to on-going rehabilitation (homecare, physiotherapy, and speech therapy). Participants reporting extended healthcare benefits, or other financial supports, were better able to access rehabilitation resources than those who were economically constrained. Limited access to rehabilitation services has been reported to limit recovery potential , whereas equitable access to resources is found to promote the development of skills such as resilience, self-reliance, and self-governance, which are associated with empowerment [22, 36]. Skill development [20, 22, 23] along with collaboration and participation with others [21, 22], opportunities for gaining knowledge and reciprocal assistance , and emotional support  are critical components of individual empowerment. Our analysis showed that, despite potentially disempowering healthcare system structures, communities can provide equitable access to resources that promote empowerment related skills.
Community stroke recovery groups were perceived as an important and equitable resource which supported development of empowerment related skills. These community groups also provided a space in which stroke survivors could create new social networks, and participate in learning, educational, and therapeutic opportunities. Social participation  and community based therapy , such as group exercise [19, 37] and aphasia therapy [18, 33, 37], are important aspects for stroke adaptation and recovery: particularly for the development of coping strategies and resilience, and understanding physical limitations and complex emotions [14, 33]. Collaboration and participation between members and coordinators present in these stroke recovery groups created a supportive empowerment environment. In summary, when analysed through an empowerment lens, there was evidence that some degree of empowerment was present among stroke survivors and caregivers. However, their stroke healthcare system did not appear to provide an overarching empowering environment that equitably enabled the acquisition of services necessary for optimal stroke recovery opportunities.
This analysis points to the benefits of empowerment focused stroke rehabilitation as a means to improve care and support for patients . Empowerment can improve coping ability, patient satisfaction, adaptation to condition, clinical outcomes, and independence and quality of life . Malterud has suggested that an empowerment framework may also address inherent power imbalances associated with health professional and patient relationships . Without this type of support, stroke survivors and caregivers can experience abandonment and helplessness . Moreover, socioeconomic marginalization may increase their risk of health problems . However, critics of empowerment healthcare models suggest that most models focus only on standard patient outcomes, such as disease management and interactions with healthcare providers , rather than also encompassing patients’ holistic values. Others have suggested that the concept of empowering patients can result in the transfer of social responsibility from health providers to patients [20, 24], and is used as a means to reduce healthcare costs . This may be problematic and disempowering when patients do not have the ability, or skills , or want to take responsibility for their health [20, 24].
One potential implication for practice is the design of an empowerment framework for stroke rehabilitation and recovery policy and practise. An empowerment framework would foster holistic models of care [25, 26], enable tailoring rehabilitation to the unique and dynamic situations of stroke survivors, and open up avenues for equitable care. Additionally, this framework would support collaborative responsibility [21, 22, 25] between team members at all stages of rehabilitation, and provide opportunities for stroke survivor participation in their health care decision-making.
A second potential implication for practice is translating knowledge from empowerment orientated research into effective training programs for stroke rehabilitation health professionals. These programs would educate healthcare professionals to enact empowering and holistic approaches which should incorporate, as Bravo proposes, patients’ personal characteristics, context, and values . Furthermore, such programs would provide health professionals with a richer understanding of the power imbalances in health provider patient relationship [36, 39, 40].
Empowerment theory also considers the ethical, psychosocial, and political relationships between individuals, organizations, and communities [20, 23], but few models pay attention to empowerment’s emancipatory aspect [24, 36]. A third potential implication for practice is the formation of linkages, both formal (hospital acute stroke care and IRFs) and informal (community recreational activity services such as yoga), with stroke recovery groups to support equitable stroke rehabilitation and recovery. Stroke recovery groups, which provide opportunities for support, participation, and collaboration, may fit the notion of emancipatory natural helping systems: systems in which health, wellness, equity, competence, collaboration, and adaptation are emphasised over illness and deficiency. These dimensions are fundamental components of empowerment [21, 22]. Strengthening connections between these groups, hospitals, and community healthcare may have the potential to improve outcomes for stroke survivors.
Qualitative research is always contextual and our findings are thus specific to the healthcare system and community resources which participants in this study experienced. In addition, empowerment is also context dependent and meanings of empowerment processes and outcomes vary: for example, according to population group, culture, and socioeconomic status [20,21,22].
Therefore, the findings of this study, with participants gathered from a single metropolitan city in Western Canada, may not be representative of the experiences of other population groups.
Our recruitment process limited participants to stroke recovery group attendees and our findings may not be representative of stroke survivors not attending stroke recovery groups. Seeking out and accessing stroke survivor groups may imply that stroke survivors and caregivers were already empowered. However, the data did not illuminate the relationship between being empowered and seeking out (and accessing) stroke recovery groups. Exploring how stroke survivors and caregivers seek out and access support groups may deepen understanding of the potential relationship between being empowered and seeking out and accessing support groups. Furthermore, without data from stroke survivors who did not attend stroke recovery groups, our findings were not sufficient to elucidate the extent to which being empowered enabled participation in stroke recovery groups, or the extent to which these groups contributed to stroke survivor empowerment. Further studies, which include stroke recovery group non-attendees, may draw out other layers of insight with regards to access to and the benefits of attendance at stroke recovery groups and stroke survivor empowerment.
Another limitation is the representation of specific participants. Participant recruitment was dependent on the people present at the three locations at the time of recruitment as well as their desire to participate. This resulted in a gender imbalance in stroke survivor recruitment such that our findings may not reflect a comprehensive understanding of gendered experiences of stroke recovery multidisciplinary team care. Recruitment of spousal caregivers was dependent on consent provided by both the stroke survivor and caregiver. Only one female stroke survivor was married and consent was not provided to interview her spouse. The spouses of four male stroke survivors consented to be interviewed. More research is needed to explore not only the difference in gendered stroke survivor and spousal caregiver recruitment, but also gendered experiences of stroke recovery multidisciplinary team care. Furthermore, we were unable to make comparative conclusions between stroke survivors without spousal care and those with spousal care. However, this has the potential to build on our findings and is a ripe area for future research.
With respect to the support group coordinators and speech pathologist we recruited all the individuals who coordinated the groups: 2 groups had 1 coordinator, 1 group had 2 coordinators who worked together, and one group had a speech pathologist. This small sample of support group coordinators is a reflection of the purposeful convenient sampling approach used. Further studies in other contexts may be able to recruit a more robust sample of support group coordinators and enrich our understanding of this groups’ perspective. Finally, a limitation of the demographic survey was that it did not explore underlying co-morbidities, pattern of deficits or income which may have provided deeper insight into how stroke survivors and their caregivers managed stroke. These are potential topics for future research.
Despite these limitation, our study group was heterogeneous with participants from a range of socioeconomic, ethno cultural, linguistic, and educational backgrounds. Our data reflected a range of perspectives that indicated experiences of managing stroke, while not uniformly identical, had underlying similarities. Thus, our findings may be transferred to other population groups who experience similar healthcare and community resource structures. This research contributes to the dearth of knowledge of how stroke survivors and their informal caregivers experience stroke management and how this relates to empowerment.