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Purpose: To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation., Methods and Materials: We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis., Results: The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data., Conclusion: During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health. more...

Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management., Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis., Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful., Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses. more...

Purpose: To manage social roles is a challenging part of self-management post-stroke. This study explored how stroke survivors act as role managers with their spouses in the context of everyday activities., Method: Two stroke survivors with a first time stroke living at home with a spouse were included. Data were generated through participant observations at their own environment at 3, 6, 9, 15 and 21 months post-discharge. The narrative analysis focused on the actions of participants., Results: Daily activities can be understood as an arena where role management and a meaningful live is negotiated and co-constructed with others. Everyday activities gave stroke survivors and their spouses insight into stroke survivors' capacities in daily situations. This was sometimes empowering, and other times conflicting when a spouse had negative perceptions of the abilities of the stroke survivors., Conclusion: The findings add to the current understanding of self-management and role management with regard to how these are situated in everyday activities. Daily activities can help both spouses to reflect and understand about self-management, role management and comanagement in daily life. Moreover, observing stroke survivors in everyday situations provides professionals with concrete pictures of stroke survivors' performance and self-management in interaction with their spouses. Implications for Rehabilitation Self-management is a dynamic process in which individuals actively manage a chronic condition and finally live a meaningful life with a long-term chronic condition; self-management can be divided into medical, role, and emotional management; comanagement is when individuals activate resources and use the capacities of other persons to manage a situation together. Self-management is situated in everyday activities. Everyday activities give stroke survivors ánd their partners impressions about stroke survivors' self-management abilities post-stroke in an everyday context. Everyday activities give stroke survivors ánd their partners an arena where role management and a meaningful life are negotiated and coconstructed through doing. Observing stroke survivors in everyday situations provides professionals a concreter picture of stroke survivors' self-management and comanagement with their partners than can be obtained from an informal interview. more...

Purpose: Self-management has become an important concept in stroke rehabilitation; however, the way that people post-stroke reflect on the concept of self-management has not yet been studied. This qualitative study explored the reflections of persons post-stroke on self-management, readiness and needs in self-management support., Methods: Focus group interviews were conducted with 16 community living stroke survivors (53-84 years of age). Both verbal questions and photo elicitations were used to collect data. A constant comparative framework was used for the analysis., Result: Participants described their self-management as a complex, long-term, personal learning process. Post-discharge, participants were not ready to self-manage. Aside from individual self-management, participants also mentioned co-management with relatives. Relatives could provide support, but they also limited the development of participants' self-management skills. Participants missed having professional support post-discharge and would have appreciated additional psychological and emotional support in their process of self-management., Conclusion: Self-management post-stroke is complex. Stroke self-management programmes may be optimised when integrating role and emotional management in addition to medical management. Although readiness to self-manage differs among individuals, support should start as soon as possible and continue post-discharge in people's personal environments. Self-management programmes should not only focus on self-management of stroke survivors but also on co-management with relatives. more...

Purpose: Self-management has become an important concept in stroke rehabilitation. This study explored allied healthcare professionals' (AHPs) perceptions and beliefs regarding the self-management of stroke survivors and their knowledge and skills regarding stroke self-management interventions., Method: Four focus group interviews were conducted with 27 professionals. Verbal questions and mind mapping were used to collect data. A constant comparative framework was used for analysis., Results: The AHPs discussed different levels of post-stroke self-management, depending on factors such as pre-stroke skills, recovery-phases post-stroke and cognitive abilities of the stroke patients. They hesitated about stroke clients' capacities to self-manage. AHPs questioned whether their own attitudes and skills were really supportive for stroke clients' self-management and criticised stroke services as being too medically oriented. They recommended that self-management programmes should focus both on clients and caregivers and be delivered at peoples' homes., Conclusion: Professional perceptions and beliefs are important factors to take into account when implementing stroke self-management programmes. Before professionals can enable stroke survivors to self-manage, they first need support in acquiring knowledge and skills regarding post-stroke self-management. Moreover, professionals could benefit from behavioural change models, and professionals recognised that stroke self-management interventions would be most beneficial when delivered post-discharge at people's homes., Implications for Rehabilitation: Post-stroke self-management is a learning process with different levels dependent on pre-stroke lifestyle and self-management skills, the post-stroke phase of recovery, the cognitive abilities of stroke survivors and the support of caregivers (co-management). Persons with cognitive impairments are not persons who cannot learn to self-manage; rather, they need more specific self-management support. Case studies describing the abilities of stroke survivors, who are successful in self-management post-stroke, can help to develop "ability oriented" stroke-illness scripts. Addressing "ability oriented" stroke-illness scripts in bachelor and post-graduate education will enhance positive professional beliefs concerning the self-management post-stroke, and will help professionals in coaching in stroke survivors' goal setting in self-management programmes. Professionals' account suggests that stroke self-management programmes should also be delivered post-discharge at stroke survivors' own homes. more...

Introduction: The aim was to obtain the best available knowledge on stroke survivors' experiences of rehabilitation. The increase in demands for accountability in health care and acknowledgement of the importance of client participation in health decisions calls for systematic ways of integrating this perspective., Methods and Materials: A systematic review of qualitative studies was performed. A literature search in MEDLINE, CINAHL, PsycINFO, and EMBASE was conducted. Suitability for inclusion was based on selected criteria: published qualitative studies written in English from 1990 to 2008 on stroke survivors' experiences of rehabilitation in a clinical setting. Data analysis entailed extracting, editing, grouping, and abstracting findings., Results: Twelve studies were included. One theme, "Power and Empowerment" and six subcategories were identified: 1) Coping with a new situation, 2) Informational needs, 3) Physical and non-physical needs, 4) Being personally valued and treated with respect, 5) Collaboration with health care professionals and 6) Assuming responsibility and seizing control., Discussion: The synthesis showed that stroke survivors' experiences of rehabilitation reflected individual and relational aspects of power and empowerment. The capacity to assume power and empowerment was a dynamic rather than a progressive issue, and enabling empowerment was a matter of weighing contrasting issues against each other, e.g. the right to decide versus the right not to decide. more...

The objective of this study was to produce a valid Danish translation of the Dutch "Occupational therapy guideline for assessment and treatment of apraxia in CVA clients"; to investigate the inter-rater reliability of the assessment instrument in terms of ADL observations; and to determine the content validity of the translation. The inter-rater reliability was investigated using video observations and multiple raters, who also judged the content validity quantitatively. For the scores of the patient's occupational performance the study found moderate to good inter-rater reliability for three of four variables and poor to fair inter-rater reliability for one variable, indicated by intra-class correlation coefficient and Kappa statistic. For the conclusion variables the results demonstrated fair inter-rater reliability for five of six variables and poor inter-rater reliability for one variable, also indicated by Kappa statistic. The content validity was judged valid for 100 and invalid for 28 of the guideline's defined elements. The conclusion, taking the complexity of the ADL observations and the study design into consideration, is that the Danish version can serve as a guideline within Danish occupational therapy practice. However, a translational recheck, further psychometric testing, and a minimum two-day training course is recommended before implementation in practice. more...

Objective: To evaluate the experience of clients and clinicians in working with a tool to help set goals that are personally meaningful to rehabilitation clients. Design: We have applied the tool in the outpatient rehabilitation setting. Clients' and clinicians' experiences in working with the tool were evaluated in individual, semi-structured interviews and focus group interviews, respectively. Thematic analysis was used to analyze the data. Setting: A university medical center and a rehabilitation center. Subjects: Clients with a first-time stroke (n = 8) or multiple sclerosis (n = 10), and clinicians (n = 38). Intervention: The tool to help set meaningful goals consisted of a session (i) to explore the client's fundamental beliefs, goals and attitudes and (ii) to identify a meaningful overall rehabilitation goal. The results of that session were used by the multidisciplinary rehabilitation team (iii) to help the client to set specific rehabilitation goals that served to achieve the meaningful overall rehabilitation goal. Results: Both clients and clinicians reported that the tool helped to set a meaningful overall rehabilitation goal and specific goals that became meaningful as they served to achieve the overall goal. This contributed to clients' intrinsic rehabilitation motivation. In some clients, the meaningfulness of the rehabilitation goals facilitated the process of behavior change. Both clients and clinicians made suggestions on how the tool could be further improved. Conclusion: In the opinion of both clients and clinicians, the tool does indeed result in goal setting that is personally meaningful. Further development, implementation and evaluation of the tool is warranted. [ABSTRACT FROM AUTHOR] more...

Background: A description of the complexity of the process of self-management and the way stroke survivors give meaning to their process of self-management post-stroke is lacking. This study explores how stroke survivors managed their lives, gave meaning to their self-management post-stroke and how this evolved over time. Methods: Data was generated through participant observations and interviews of 10 stroke survivors at their homes at 3, 6, 9, 15 and 21 months post-discharge. A constant comparative method was chosen to analyse the data. Results: 'Situated doing' was central in stroke survivors' simultaneous development of self-management and their sense of being in charge of everyday life post-stroke. Doing everyday activities provided the stroke survivors with an arena to explore, experience, evaluate, develop and adapt self-management and being in charge of everyday activities and daily life. The influence of stroke survivors' partners on this development was sometimes experienced as empowering and at other times as constraining. Over time, the meaning of self-management and being in charge changed from the opinion that self-management was doing everything yourself towards self-managing and being in charge, if necessary, with the help of others. Moreover, the sense of self-management and being in charge differed among participants: it ranged from managing only at the level of everyday activities to full role management and experiencing a meaningful and valuable life post-stroke. Conclusions: The findings of this study indicate the doing of activities as an important arena in which to develop self-management and being in charge post-stroke. Stroke self-management programs could best be delivered in stroke survivors' own environment and focus on not only stroke survivors but also their relatives. Furthermore, the focus of such interventions should be on not only the level of activities but also the existential level of self-management post-stroke. [ABSTRACT FROM AUTHOR] more...