Body, participation and self transformations during and after in-patient stroke rehabilitation (original) (raw)
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Disability and Rehabilitation, 2014
Purpose: Research has mainly focused on the first year of recovery trajectory after stroke, but there is limited knowledge about how stroke survivors manage their long-term everyday lives. This study seeks to fill this gap by exploring the long-term (1-13 years) negotiations of stroke survivors when they experience progress, wellbeing and faith in the future. Method: Repeated in-depth interviews were conducted with nine people living with moderate impairment after stroke and their closest relatives. Concepts from phenomenology and critical psychology constituted the frame of reference of the study. Results: The long-term stroke recovery trajectory can be understood as a process of struggling to overcome tensions between three phenomena under ongoing change: the lived body, participation in everyday life and sense of self. During the recovery process, stroke survivors experience progress, well-being and faith in the future when moving towards renewed relationships, characterised by (1) a modified habitual body, (2) repositioned participation in specific everyday life contexts and (3) a transformed sense of self. Conclusions: This study stresses the importance of developing new forms of professional support during the long-term recovery trajectory, to stimulate and increase interaction and coherence in the relationship between the stroke survivor's bodily perception, participation in everyday life and sense of self. ä Implications for Rehabilitation The study deepening how the long-term recovery trajectory after stroke is about ongoing embodied, practical and socially situated negotiations. The study demonstrates that the recovery trajectory is a long term process of learning where the stroke survivor, as an embodied agent, gradually modifies new bodily habits, re-position participation and transforming of the self. Health personnel are usually available in the acute and early rehabilitation period. The three phenomenons under ongoing change; ''body'', ''participation'' and ''self'' are at this point just about being moved toward a renewed and a more coherent relationship in the stroke survivor long-lasting everyday life situated recovery trajectory. Available rehabilitation services at the municipal level supporting stroke survivors and relatives practical, social and interpersonal long-term challenges in everyday life can be important for minimizing their struggles and for promoting the experience progress, wellbeing and faith in the future.
Medicine, Health Care and Philosophy, 2012
Survivors of a major stroke have to live with serious and often lifelong disabilities. Stroke is a family illness as its various consequences affect all areas of life. Spouses have to take on new and demanding roles in addition to grieving the losses. Children show behavioural problems related to their parents' ability to deal with the consequences of stroke. The overall aim of the study has been to illuminate the long-term lived experience of stroke within a family context. A phenomenological hermeneutic approach inspired by the philosophical concepts of Heidegger, Merleau-Ponty, Gadamer and Ricoeur facilitated interpretations of meaning of lived experience. Thirty-nine narrative interviews with stroke survivors, spouses and adult children who were minors at the onset of their parent's stroke provided descriptions of these families' life-world experiences. Families were thrown from their familiar being-in-the-world and into transitional experiences called forth by the stroke and its life-changing consequences. Three phenomena manifesting themselves powerfully in these families' life-worlds and sharing threads across the three original papers emerged: firstly, communication; secondly, relationships; thirdly, identity. Role changes, altered relationships, loss of appreciated activities and loss of independence called for open family communication to deal with these changes. The stroke's devastating effects on families' communication patterns complicated these efforts. Aphasia was perceived as the worst consequence of stroke. Feelings and thoughts remained undisclosed and shared problem solving became difficult. In addition stroke survivors' cognitive disabilities and changes in behaviour complicated communication. These problems created loneliness and distance between the family members. However, by means of its caring and supportive relationships, the family was perceived as a lifebuoy providing motivation and emotional support to go on with life in spite of serious disabilities. Through joining stroke and aphasia support groups, couples adapted more easily to changes and utilised new possibilities. Helping and being helped within family and support groups strengthened perceptions of self. Empathic and caring relationships with health care workers had a positive influence on hope and motivation whilst non-caring and disrespectful actions or premature prognosis were devastating for a couple's hope and well-being.
European Journal of Cardiovascular Nursing, 2014
Background: Stroke is the leading cause of disability in adults, and has a significant impact on individuals, families, and society. Returning home after a stroke represents a challenging experience for patients who struggle to adapt to their new life conditions. Although many studies have been conducted on stroke survivors, few studies have focused on the lived experience of patients at three months after they came home after rehabilitation. Aims: The aim of this study was to describe the experience of stroke survivors three months after being discharged home from rehabilitation hospitals. Method: A phenomenological methodology was used to conduct the study. Participants were enrolled from rehabilitation hospitals in the cities of Rome and Naples. Interviews were conducted at the patients' house and data were analysed with a phenomenological approach Findings: Fifteen stroke survivors were interviewed (mean age 70 years; 12 males). Five themes emerged from the phenomenological analysis of the interviews and the field notes: deeply changed life, vivid memory of the acute phase of the stroke, slowed lives, relief after recovering from stroke, being a burden for family members.
Objective: To investigate the meaning of acting with others, in different places over the course of 1 year post-stroke. Methods: Qualitative interviews with 9 persons, age range 42-61 years (7 persons with cerebrovascular accident and 2 with subarachnoidal haemorrhage) over the course of a year (i.e. 3, 6, 9 and 12 months) were analysed using a grounded theory approach. Results: Four categories were identified from the analysis of the participants' experiences during the year of rehabilitation: (i) not recognized as the person I am; (ii) the burden of burden; (iii) inspiration and belonging through acting with others; (iv) reality adjustment through acting with others. From these categories a core category emerged: a process of belonging for integration. Conclusion: The 4 categories identified suggest that belonging is integral to participation, which is viewed as the goal of rehabilitation.
Journal of Rehabilitation Medicine, 2010
To investigate the meaning of acting with others, in different places over the course of 1 year post-stroke. Methods: Qualitative interviews with 9 persons, age range 42-61 years (7 persons with cerebrovascular accident and 2 with subarachnoidal haemorrhage) over the course of a year (i.e. 3, 6, 9 and 12 months) were analysed using a grounded theory approach. Results: Four categories were identified from the analysis of the participants' experiences during the year of rehabilitation: (i) not recognized as the person I am; (ii) the burden of burden; (iii) inspiration and belonging through acting with others; (iv) reality adjustment through acting with others. From these categories a core category emerged: a process of belonging for integration. Conclusion: The 4 categories identified suggest that belonging is integral to participation, which is viewed as the goal of rehabilitation.
Background and Purpose. Patient experience is increasingly being recognised as a key health outcome due to its positive correlation with quality of life and treatment compliance. The aim of this study was to create a model of how patient’s experiences of rehabilitation after stroke influence their outcome. Methods. A metaethnography of qualitative articles published since 2000 was undertaken. A systematic search of four databases using the keywords was competed. Original studies were included if at least 50% of their data from results was focused on stroke survivors experiences and if they reflected an overarching experience of stroke rehabilitation. Relevant papers were appraised for quality using the COREQ tool. Pata analysis as undertaken using traditional processes of extracting, interpreting, translating, and synthesizing the included studies. Results. Thirteen studies were included. Two themes (1) evolution of identity and (2) psychosocial constructs that influence experience were identified. Amodel of recovery was generated. Conclusion. The synthesis model conceptualizes how the recovery of stroke survivors’ sense of identity changes during rehabilitation illustrating changes and evolution over time. Positive experiences are shaped by key psychosocial concepts such as hope, social support, and rely on good self-efficacy which is influenced by both clinical staff and external support.
Scandinavian Journal of Caring Sciences
Holding space and transitional space: stroke survivors' lived experience of being on an acute stroke unit. A hermeneutic phenomenological study Despite substantial reorganisation of stroke unit provision in the United Kingdom, limited qualitative research has explored how stroke survivors experience the acute stroke unit. This hermeneutic phenomenological study used accounts from four stroke survivors who experienced one of two acute stroke units. Through detailed analysis, the acute stroke unit emerged as a meaningful space, in two distinct but interconnected forms. As holding space, the unit was understood to offer protection and safe haven, as the stroke survivors looked to cope and respond to the temporal, bodily, biographical disruption and significant vulnerability brought about by stroke and by being in hospital. Holding was fulfilled by different people (including their fellow stroke survivors) and reflected a human response to human need and existential vulnerability. This space, and the practices within it, functioned to hold them intimately but also at a distance from their prestroke lifeworld. As such, the acute stroke unit holding space was intertwined with how it supported, encouraged or provoked transition. In the transitional space of the acute stroke unit, stroke survivors described how they survived the hospital-healthcare space, stroke unit and poststroke space. This paper articulates how transition was meaningfully signified through its absence or presence, as they transformed, relinquished or reasserted their 'self', and in one case, recovered whilst 'in there'. The findings of this study provide phenomenological insight into stroke survivors' lived experience, the meaningful holding and transitional contribution of the unit, and how these spatial forms were intertwined. These insights are discussed in relation to the existing evidence base and stroke unit provision.
First-time stroke survivors and caregivers’ perceptions of being engaged in rehabilitation
Aim. To explore community-dwelling first-time stroke survivors and family caregivers' perceptions of being engaged in stroke rehabilitation. Background. Stroke is recognized as a worldwide common healthcare problem and the leading cause of adult disability. An holistic approach to rehabilitation can only be achieved by engaging stroke survivors and caregivers in all stages of recovery and by providing ongoing coordinated rehabilitation programmes.