The Patient's Experience of the Psychosocial Process That Influences Identity following Stroke Rehabilitation: A Metaethnography

2.1.1. Eligibility Criteria

Studies were included if they

1. reported on patients' experience of rehabilitation after stroke following the year 2000. This date represents a major policy [59] shift towards patient-centred care within the NHS;

2. utilised empirical qualitative data from primary research source such as interviews, focus groups, or ethnographic research;

3. focussed on patient experiences reporting at least 50% of the result section with a focus on patients' experience and perceptions;

4. considered the experience of rehabilitation provided by a number of health care professionals as part of an operating stroke service;

5. published in a peer-reviewed journal in English.

2.1.2. The Synthesis Papers

Thirteen studies met the inclusion criteria. The characteristics of the thirteen included studies are presented in Table 2. The location of the studies is shown and apart from Sabari et al. [48] carried out in the USA, the remainder were conducted within Western Europe. Five of the studies [38, 39, 49, 51, 55] used a single interview to collect their primary data, one of the studies [53] used a focus group, and seven of the studies [26, 37, 48, 50, 52, 54, 56] used repeated data collection over time. All studies undertook interviews, except one, which included video analysis from within a community stroke club setting [48].

Three studies [26, 37, 38] focused specifically on younger stroke survivors/patients (age range 37–65). Only two studies [60, 61] had a lower age limit of 60 years old. There were a number of topics used to guide the semistructured interviews and focus groups. Five studies [37, 39, 50–52] documented the patient's initial experiences of having the stroke, the event, and its impact.

3.1.1. Subtheme 1a: Sense of the Individual's Identity

A sense of the individual encompasses the whole person, their individual factors such as age and comorbidities and the activities and hobbies of their previous life. Participants suggested their broader human needs were not met and that they were not acknowledged as individuals in the rehabilitation experience [53, 54]. A more recent concept in some of the studies, the “individual recovery model,” is considered a direct response to this and an opportunity for professionals to understand how stroke survivors see a way to their recovery [55, 56]. The model suggests that an individual combines knowledge of themselves and their life experience with professional opinions and advice to create a path and understanding for their own recovery. Essentially this concept is not a new one; all the synthesised studies had the needs and wishes of the individual as key to successful and satisfying experience within rehabilitation. Indeed, many of the older studies also acknowledged that individuals had their own ideas of recovery and rehabilitation [37, 39, 48, 53]. These wishes are clearly associated with their hopes and expectations. For instance, a participant in the study by Bendz [37] states “I want to get back to my usual self…the one I used to be.” (Female, 64 years, after 3 months).

3.1.2. Subtheme 1b: Being at the Dividing Line

This subtheme considers a key aspect of adjustment for individuals who have experienced a stroke, when they acknowledge the meaning of the stroke in their lives. This subtheme occurs in the patient reported experience at times of transition when self-realisation (acknowledgment and understanding of one's present situation) is heightened due to exposure to a new reality, such as going home after rehabilitation, when adjustments and new insights are required [52]. Transition, adjustment and the learning associated with these experiences appear to be significant for the individual in the rehabilitation process. By being able to problem solve and practice tasks, self-esteem and confidence are improved [56], as is self-efficacy. Expectations are high for individuals at the time of transition where the adjustments that follow require recognition of the “new” self. The role of the professional and the family seems crucial at this time (see Table 3) to assist the individual to rebuild and restructure their world through this experience [51].

3.1.3. Subtheme 1c: Rebuilding, Restructuring, and Identity

Within this subtheme individuals acknowledge the situation that their stroke caused and consider the future and begin a process of adaptation and practice. Individuals with a stroke reported getting to a point following the acknowledgement of their situation, during or following rehabilitation where they consider the role and meaning of what their life will be. Individuals require time to adjust to this realisation [38, 49, 50, 54]. They utilise experiences [26, 51] to acquire this understanding and begin to attempt adaption to their stroke through practice. The desire for reintegration with aspects of their identity that can be restored is undertaken. This desire is an important motivating force. For instance, Erikson et al. [26] highlighted a participant at 12 months after stroke who stated “Your goal is to live a normal life, just as it used to be. Your children should not need to think that it is an awkward old man that they are walking together with. You do not want to deviate more than before. It's important for oneself too” (page, 836).

3.1.4. Subtheme 1d: Reintegrating Identity with Their Life

Individuals' desire for reintegration to their social world after stroke was found to inspire engagement in rehabilitation and gave the feeling of increased energy and meaning in an individual's life [39, 50]. Individuals did not talk about their experience of participation but of belonging, having a sense of identity and an occupation [26, 38]. It appears that more than lacking in participation, stroke survivors described experiencing a lack of meaning to the tasks they practised in recreation and therapy [39, 55]. There was a great value to feeling a sense of belonging during the process of change that occurs with rehabilitation. The concept of belonging and acceptance of a “new” self appears important in the participant's experience of rehabilitation after a stroke. It is enhanced with occupation and success in activities of daily living by improving self-esteem and confidence [52].

3.2.1. Subtheme 2a: Social Support

The partnerships and support experienced varied between studies and was provided by a network of people. The variability was probably due to the studies representing a cross-section of international data from acute rehabilitation, to, services for chronic stroke survivors. Support from professional staff and the individual's network of friends and family took on many forms. It included instrumental and emotional support as well as access to timely but potentially long term services providing information and resources. Frequently the participants highlighted the positive experience of having skilled staff available to provide feedback and encouragement [48, 52, 53, 55]. Further, the different ways that participants experienced support within their rehabilitation affected their ability to regain autonomy and reconcile their sense of self. Erikson et al., illustrate the vulnerability of a patient: “I become very uncertain even though I know I'm right. My feeling is that the staff think that I understand less than I actually do” (page 833).

3.2.2. Subtheme 2b: Autonomy

In the majority of studies autonomy was highlighted as a key factor that influenced outcome by the majority (11/13) of studies. Individuals recognised having autonomy helped to build self-esteem and confidence instead of traditional paternalistic models of care constraining their independence and self-determination [49]. The ability to make their own choices and solve their own problems led to participants taking increased responsibility and improving their outcomes [52]. Participants identified that partnerships with professional staff and shared decision making improved their experience [54]. So through gaining autonomy participants were better able to reconcile their sense of “self” and this acted as a primary way to move on from the current self towards evolving the self.

3.2.3. Subtheme 2c: Coping and Adjustment

Adjusting to and managing the effects of the stroke were expressed in several ways. Individuals were both able to look forward to the future and identify an ability to cope. Burton [50] suggests that “when new coping mechanisms had been established and were perceived to be successful, informants felt more able to do things” (page, 305). Other patients needed to express multiple losses. Patients described a loss of role, loss of belonging, loss of control, and the loss of ability described as the “paralysed everyday” [38, 39]. Patients described dependency on others and feelings of helplessness, further to this, the burden of being a burden (the negative thoughts and feelings associated with being a burden on someone else) and isolation [37, 51]. Indeed, six studies [26, 38, 50–52, 54] identified that patients did not want to be a burden on family members or friends. This perception clearly affected an individual's ability to cope. Although, the concept of “burden of burden” and its impact on well-being requires further investigation [26].

3.2.4. Subtheme 2d: Hope

Hope, described by participants in respect of what they wished to happen and their expectations, involved a sense of moving forward continuously from dependence to independence similar to that described by coping [49]. The participant's expectations of training and the role that professionals had in their rehabilitation was high and observed specifically when describing their disappointment in the therapy input on going home or reduced opportunities for recreation [39, 55]. Many of the studies contained first order constructs of hope by the participants and the concept of hopelessness when finding themselves not progressing in their own environments [53]. Bendz [37] followed participants up to a year after stroke and found that participants did not want to give up hope: “I'm going to train…feel that you mustn't give up…I do it to be able to…carry on existing…no good giving up…oh no.” (page, 219). Similar expressions from Wottrich et al. [56] illustrated that the need for a concrete hope a patient has: “My hope is to recover to my previous level, to be able to walk as well as before and to use the arm, to get as close as possible to where I was before, preferably all the way there. I'm not sure it's going to be possible, it's just training” (page, 1220).

3.2.5. Subtheme 2e: Success, Motivation, and Mastery Experiences

How participants perceived their success was dependent on what they had experienced moving forward and whether they were in a positive emotional state. The second order constructs of self belief and aspirations were enhanced when participants were achieving success [56]. Many studies reported participants experiencing a sense of momentum to recovery over time where the experience of some successful recovery helped to maintain their motivation [53–55]. Staff could be central to this, as Gibbon [51] illustrates “My faith was in (named nurse)…he always made you get on and found ways to encourage you; he always lifted my spirits” (page, 10).

3.2.6. The Line of Argument Synthesis

Our synthesis of themes and subthemes clearly identifies a need for health care professionals to consider their interaction and care giving around the psychosocial needs of the patient in order to support their transition in identity. These needs are directly associated with the challenge the participant has in coming to terms with an altered identity. Figure 2 provides details of the processes involved when the stroke influences a patient's identity.

The model of transitional experiences within stroke rehabilitation illustrates the transition in identity and factors which impact on that transition. Aligned with previous research in stroke and other neurological conditions [13] we utilise the paradox of chronic illness [65] to highlight that individuals are impelled to defy limitations imposed by their stroke but also concurrently have some understanding and acceptance of their limitations. Further to this, what an individual can accept about their situation and illness varies (inter-patient variation) and health care professional need to consider what a patient can accept.

Importantly for the health care professional, the model generated from this synthesis illustrates the need and value of considering the process of transition in identity and the importance of listening when there is uncertainty, expression of losses, or when an individual's expresses hope and aspirations. There is value in exploring such expressions to communicate to the patient that they have been heard and valued as an individual and, following this, attempting to change or help an individual that it is done in a style that uses questions to offer different or alternative views and possibilities (emphasis on negotiation with the patient) rather than confronting a patient and demanding change (emphasis on directing the patient). This is important because of the difficulty in or time needed when adapting to a new identity. Further, health care professions are vital in encouraging and supporting the individual when they attempt to integrate themself into their life following rehabilitation, as at these times, they may be most able to positively alter, adapt, and evolve their identity. Support and encouragement needs to reflect the use of psychosocial concepts which are identified within the respective theme.