Table 2. Outline of the aims and additional themes from the systematic reviews added during the updating search.
| Author, Year, No. studies included | Review aim | Populations studied | Existing themes a corroborated by this paper | Additional themes a and insights from the new paper |
|---|---|---|---|---|
| Eilertsen 2012 12 studies | To interpret and synthesise stroke survivors’ experiences of post-stroke fatigue. | Stroke survivors. | Despite the specific focus, this review corroborates the stroke survivors’ journey already described, including themes related to: Adjusting to the on-going symptoms post-stroke (and specifically fatigue), and the challenges The informational needs on coping with stroke symptoms (and specifically fatigue), and the perceived sequel and social stigma (specifically the misinterpretation of fatigue as laziness) The experiences of services, (and specifically the lack of appreciation of the limitations to rehabilitation imposed by fatigue) | This review specifically highlights the symptom of fatigue: Findings divided into two categories ‘primary / core characteristics of fatigue less influenced by context’ and those ‘additional characteristics being more responsive to the context’Lack of energy to perform activities Abnormal need for sleep Tiring easily and abnormal need for naps and rest Unpredictable feeling of fatigue Increased sensitivity to stress Fatigue was described as being invisible–‘a hidden dysfunction’ which was a hindrance in the workplace and socially. |
| Gallacher 201369 studies | To examine the qualitative literature on treatment burden in stroke from the patient perspective | Stroke survivors | This review corroborates a number of themes already found: Coping, retaining and adapting, and the need to accept the new self The evolution as physical recovery plateaus, but social goals, coping with guilt about dependency and stigmatisation become increasingly important, and challenge reintegration into society The barrier imposed by poor communication and lack of information made worse in the absence of trust in healthcare professionals | The additional contribution of this review is to consider the treatment burden of stroke (essentially the self-management strategies patients must enact in response to the demands of health care professionals and health care systems). They identified four main areas of treatment burden: “making sense of stroke management and planning care”; interacting with others (health care professionals and the community) for support (both emotional and practical); enacting management strategies (both hospital and in the community); and reflecting on their management which includes taking decisions about their care and appraising treatments. Additional specific themes are: Younger and less disabled survivors feel uncomfortable attending groups with older or more disabled stroke survivors. Those referred to a care home after hospital describes the negative experience of on-going paternalistic care. This review enlarges on the practical experience of reintegration into society: waiting for more appropriate housing and technologies to protect against falls. Lack of support to return to driving. |
| Hole 2014 13 studies | To create a model of how patients ‘experiences of rehabilitation after stroke influence their outcome | Stroke survivors | Corroborates the theme of evolution over time and the need to make the transition: from the previous self and existing identity, through a complex process involving coping with and adjusting to disabilities, accompanied by a range of emotions including uncertainty, realisation, expectations, aspirations, vulnerability, isolation and hope, being supported (by peers and professionals) to rebuild and structure their social world, with the need to achieve successes/mastery to promote self-esteem and confidence to achieve integration into their social world with an ‘evolved’ identity | This review elaborates on the reintegration phase emphasising the need for professional support and positive encouragement to promote success and self-belief as patients ‘alter, adapt and evolve’ their identity during the work of reintegrating themselves into society. |
| Sarre 201340 studies | To synthesize qualitative studies on adjusting after stroke, from stroke survivors’ and carers’ perspectives, and to outline their potential contribution to an understanding of resilience | Stroke survivors and carers | This review corroborates the themes related to the impact of stroke (sudden onset, with effects not only on physical disability, but also sense of self and relationships) and the process of adjusting to the effects which unfolds over time. There is a need for recovery, and then adjustment and/or resilience as stroke survivors seek to achieve (a new) ‘normality’. It also identified the many factors which influence the success of this process, including social, healthcare and work-related support. | This review elaborates on the theme of reintegration into society and explicitly highlights that the ability to return to work depends on the willingness of the employer to adapt the workplace as well as the attitudes of other employees. Disability discrimination legislation was important. |
| Satnik 2013 33 studies | To synthesize patients’ views on the impact of stroke on their roles and self | Stroke survivors | This review corroborates the themes relating to the challenges of regaining or developing a new self which they trust and with which they feel comfortable. There is a need to identify new roles that were valued, enabling them to contribute to family/work/society despite having to adapt. For some this involved adapting work arrangements (e.g. by reducing stress, taking rests, reducing hours), others changed their social position, such as decided to spend more time with their grandchildren | This review elaborates on themes related to reintegration including the need for stroke survivors to move from passively being ‘cared for’ post-stroke to actively managing their own evolution to social reintegration. Paternalism from healthcare professionals and overprotection from family were cited as barriers to autonomy and actively taking control. |
| Walsh 2014 18 studies (2 were mixed methods with qualitative findings extracted only) | To examine the barriers and facilitators of community reintegration in the first year after stroke from the perspective of people with stroke | Stroke survivors | This review corroborates the themes related to: Barriers to social reintegration, especially (sometimes fluctuating) physical disabilities, emotional challenges (including loss of confidence and fear of recurrence especially if previous lifestyle was perceived to be reason for stroke) and issues of stigma and acceptance by others. Positive psychological characteristics (e.g. hope, resilience, perseverance, risk taking) increased success in recovery. Healthcare professional/patient relationship needed to maintain momentum after early physical recovery with need for better communication about return to work, driving, and fatigue management. Some patients experience a sense of abandonment by healthcare professionals. | This review elaborates on the theme of community reintegration: Stroke survivors need to find ways to help others in order to reduce their sense of being a burden Returning to driving is an important facilitator; there were often difficulties with public transport. Rehabilitation in hospital/institutional settings was not always perceived as being relevant to real-life when back at home. It is important to strike a balance between capacity, identity and personal expectations. |
| Williams 20136 studies | To explore the experience of engaging in occupation following a stroke for older people in the community? | Stroke survivors | This review corroborates themes related to: Emotional impact of stroke and the need to seek a new ‘self’, the loss of social contact and the need to develop new relationships (e.g. stroke/community support group) | Additional elaboration includes: Inaccessible environments and a specific fear of falling The wish to retain meaningful occupations. |
HCP = health care professional,
a for consistency “domains”, “categories” and “third order constructs” are considered to be synonymous with “themes” in this table,
b a mixed review with quantitative and qualitative studies, only qualitative studies reported here.