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Journal of Neuroscience Nursing:

Stroke: The Increasing Complexity of Carer Needs

Ski, Chantal; O'Connell, Bev

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Questions or comments about this article may be directed to Chantal Ski, PhD, at She is a research fellow at Deakin University's Eastern Health School of Nursing, Burwood, Victoria, Australia.

Bev O'Connell, PhD RN FRCNA, is inaugural chair in nursing at Deakin University's Southern Health Nursing Research Centre, Clayton, Victoria, Australia.

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In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well‐being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life‐BREF scale, and Zung Self‐Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow‐up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

In Australia, more than 346,000 stroke survivors live in the community with varying degrees of neurological impairment (Australian Institute of Health and Welfare [AIHW], 2006). Further, 80% of individuals who experience a stroke return home, relying on emotional and physical support from informal carers who are typically family members (Australian Bureau of Statistics [ABS], 2003; Han & Haley, 1999). This article reports findings of a study that investigated the postdischarge needs of 13 people who had experienced an acute stroke and their carers at 3 weeks and 3 months after their return home.

Those who care for people who have survived a stroke are required to cope instantly with the sudden change in the stroke survivor's mobility, communication skills, moods, and personality (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; van Heugten, Visser‐Meily, Post, & Lindeman, 2006). This burden of care can be excessive and can have an impact on carers' health and well‐being, placing them at risk for burnout (Smith, Lawrence, Kerr, Langhorne, & Lees, 2004; van den Heuvel, deWitte, Schure, Sanderman, & Meyboom‐deJong, 2001). Because the majority of carers are of an older age, a carer's ill health places the stroke survivor at risk of having to be placed into a long‐term residential care facility (Chumbler, Rittman, van Puymbroeck, Vogel, & Qin, 2004).

Carer well‐being is an important issue to consider, especially given the trend for rehabilitation facilities to promote early patient discharge, which results in stroke survivors returning home at an earlier stage in the recovery process. Because of the increasing cost of hospital services, the last decade has seen a significant change of focus toward community‐based rehabilitation (Lincoln, Walker, Dixon, & Knights, 2004). In 1999, the Australian Institute of Health and Welfare conducted a national study of the burden of disease and injury in Australia and identified that the economic burden of stroke exceeds that of any other disease (Commonwealth Department of Health and Aged Care, & Australian Institute of Health and Welfare, 1999). A substantial portion of the cost of home care is borne by informal carers. Carers not only play an indispensable role in patient care and management, but their ability to manage this role effectively is also crucial to sustaining the healthcare system (Angus, 2003; Carers Australia, 2006; O'Connell, Baker, & Prosser, 2003).

The ABS (2003) defines carer as a person of any age who provides any informal assistance, in terms of help or supervision, to persons with disabilities or long‐term conditions or persons who are 60 years or older. The assistance has to be ongoing, or likely to be ongoing, for at least 6 months. Assistance to a person living in a different household relates to everyday types of activities, without specific information on the activities (ABS).

Providing carers and stroke survivors with comprehensive and adequate information is vital. Poorly developed support resources for carers that offer minimal information and advice can not only add to carer distress but also impede the stroke survivor's recovery process (Han & Haley, 1999; van Exel, Koopmanschap, van den Berg, Brouwer, & van den Bos, 2005). In Australia, evidence shows that by better preparing carers for their caring role and by providing useful information, stroke survivors can be better cared for in the home environment (Clark, Rubenach, & Windsor, 2003; Clark & Smith, 1998). However, carers still voice concerns that they are poorly prepared for this role (Murray, Ashworth, Forster, & Young, 2003; O'Connell et al., 2003).

A stroke is a medical emergency that is poorly recognized within the community, and although it mainly affects elderly people, it can occur at any age (AIHW, 2006). The abrupt onset of the condition and the ever‐decreasing length of the associated hospital stay create a formidable environment for both stroke survivors and carers. The initial few months after the survivor reenters the family home have been referred to as the “crisis of stroke” (King et al., 2001). During this crisis period, two common psychological consequences of stroke, depression and reduced wellbeing (Murray, Young, Forster, & Ashworth, 2003), are most likely to occur for both carer and survivor (Grant, Elliott, Weaver, Bartolucci, & Giger, 2002; Han & Haley, 1999).

Previous studies investigating psychological consequences of stroke for the stroke survivor and carer have not taken into account the type or amount of stroke support information that had been provided. The current study set out to examine changes in stroke survivor and carer well‐being and depression at 3 weeks and 3 months postdischarge, along with carer perceptions of the value of stroke support information provided. The two main aims of this study were to

* identify carer knowledge of stroke support services available within the community

* examine the impact of stroke on the stroke survivor and levels of well‐being and depression in both the carer and the stroke survivor.

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A longitudinal design using survey method and structured interviews was used to address the study objectives. Participants were recruited from two acute and one subacute hospital in the eastern suburbs of Victoria, Australia. Ethics approval was obtained from the participating hospitals and the collaborating university.

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The sample comprised 13 stroke survivors (5 male and 8 female), and their carers (N = 13; 7 male and 6 female). Each of the stroke survivors had suffered a moderate stroke, as assessed by the Stroke Impact Scale (SIS), which depicts stroke severity as mild, moderate, or severe, defined by SIS scores of <40, 40‐70, and >70, respectively (Duncan et al., 1999). All participants were recruited from an inpatient rehabilitation unit after being transferred from acute care. Stroke survivor ages ranged from 59 to 84 years (M = 72.46, SD = 6.48) and carer ages ranged from 42 to 81 years (M = 66.23, SD = 14.34). Ten carers were spouses of stroke survivors, and three were siblings of stroke survivors.

Nurse unit managers helped the university's research assistant to identify suitable candidates on the basis of the following inclusion criteria:

* Patients had a confirmed primary diagnosis of stroke.

* Carers and stroke survivors were able to read and speak conversational English.

* Stroke survivors did not have reported or observable dementia.

* Stroke survivors were discharged home.

* Carers were living with the stroke survivor.

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All study participants were recruited when the stroke survivor was transferred from the acute care setting to an inpatient rehabilitation unit, prior to being discharged home to receive in‐home rehabilitation. Carers and stroke survivors were offered the option of being interviewed together or separately. Time 1 (3 weeks postdischarge) and Time 2 (3 months postdischarge) interviews were conducted in participants' homes with both the carer and stroke survivor present. In some instances, carers corroborated details with patients or sought agreement to the interpretation of an event. One interviewer conducted all interviews.

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Carer Interviews

A structured interview examined carers' perceptions of any stroke support information with which they had been provided (see Measures). The carer interview also consisted of two measures that assessed carer depression (using the Self‐Rating Depression Scale [SDS; Zung, 1965]) and quality of life (using the World Health Organization Quality of Life‐BREF [WHOQOL‐BREF]; see Measures). Carer interviews lasted approximately 45 minutes depending on the amount of discussion about stroke support information.

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Stroke Survivor Assessments

Stroke survivors were assisted by the researcher in completing three measures to assess the stroke survivor's physical and mental functional abilities, including stroke impact (SIS), depression (SDS), and quality of life (WHOQOL‐BREF). Interviews were no longer than 30 minutes. Carer and survivor Time 1 (T1) assessments were repeated at Time 2 (T2).

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Structured Interview

The content of the carer interview was derived from previous systematic investigations (O'Connell et al., 2003) exploring education and information support needs of carers. The carer interviews identified three main areas of interest: stroke education material, information pertaining to community support services, and support in the home. Carers were asked to evaluate the type, source, format, and adequacy of the information they received. Some examples of questions include the following:

* What aspects of recovery and rehabilitation were covered in the information you received?

* Which areas of information did you find most useful (if any)?

* Did you find the information was easy to understand?

At the end of the interview, carers were asked to state whether any needs were not met and to suggest strategies or direct assistance that would improve the transition from hospital to home for survivors and provide better support for carers.

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The Impact of Stroke

The effect of stroke on the health and life of stroke survivors was assessed using the SIS version 2.0 (Duncan et al., 1999). The SIS ascertains stroke impact by assessing impairments, disabilities, and handicaps following stroke in eight domains: strength, memory, emotion, communication, participation, hand function, mobility, and activities of daily living (ADL) together with instrumental activities of daily living (IADL). Acceptable internal consistencies (α = 0.87‐0.95), discriminant validity, and convergent validity have been reported (Edwards & O'Connell, 2003). The SIS uses the scoring algorithm of the Short Form 36® (SF‐36), which generates a score for each domain with a range of 0 (no recovery) to 100 (full recovery). Scores provide an indication of stroke severity; scores less than 40 indicate mild stroke, scores of 40‐70 indicate moderate stroke, and scores greater than 70 indicate severe stroke.

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The presence of depressive disorders in both carers and stroke survivors was assessed using the SDS (Zung, 1965). The SDS covers the domains of persuasive affect, physiological equivalence, and psychological concomitants. Studies have reported acceptable internal consistency, with an alpha coefficient of 0.79 (Bowling, 1997), and good discriminant and predictive validity (DeJonghe & Baneke, 1989; Gabrys & Peters, 1985). A total score is derived by summing the individual item scores and ranges from 20 to 80. Most people diagnosed with depression score between 50 and 69; a score of 70 and above indicates severe depression.

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The WHOQOL‐BREF scale (World Health Organization Quality of Life Group, 1998) is a modified version of the World Health Organization Quality of Life Instrument. The abbreviated version contains 26 questions divided into four domains: physical, psychological, social relationships, and environment. The WHOQOL‐BREF uses a 5‐point Likert scale response format with scores ranging from 0 to 100. Higher scores indicate higher levels of quality of life. The scale has good psychometric performance, with good internal consistency; discriminant, criterion, and concurrent validities; and test‐retest reliability. It also has been used successfully internationally with both well participants and those experiencing a range of illnesses (World Health Organization, 1999).

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Statistical Methods and Analysis

All statistical analyses were conducted using Statistical Package for the Social Sciences 12.0. Means and standard deviations were computed for the SIS 2.0, SDS, and WHOQOL‐BREF. Because of the exploratory nature of the study and the small sample size, differences over time and between carer and stroke survivor on the main outcome measures were assessed using the Wilcoxon Rank Sum test (p ≤ .05). Data from the carer interviews were analyzed using both quantitative and qualitative methodology. Frequency analyses were used for questions that could be coded. All uncoded textual data were analyzed using a content analysis procedure, thereby allowing the identification of dominant themes. Data from T1 and T2 were analyzed separately, and the dominant themes were compared for similarities and differences.

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Stroke survivor and carer means and standard deviations for the WHOQOL‐BREF and SDS are presented in Table 1. While survivor and carer scores demonstrated lower quality of life and higher depression than population norms at T1 and T2, no statistically significant differences were found. The only significant difference over time was an improvement of the stroke survivor scores on the WHOQOL‐BREF in the physical domain (p = .016). The increase in mean scores from 3 weeks postdischarge to 3 months postdischarge indicated improved levels of physical wellbeing. Further, a comparison of stroke survivor and carer quality of life domains demonstrated better levels of quality of life for carers in the physical domain at T1 (p = .004) and at T2 (p = .0042 ). A significant difference between stroke survivor and carer was also found in the psychological domain at T2 (p = .008); better levels of psychological well‐being were demonstrated in carer scores. No differences were identified between survivor and carer scores on the SDS at T1 or T2. Although depression ratings were above population norms, stroke survivor and carer scores were below a clinical diagnosis of depression (SDS < 50).

Table 1
Table 1
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Stroke Impact Scores

Means and standard deviations from the SIS are shown in Table 2; t tests revealed no significant differences for impact of stroke from 3 weeks postdischarge to 3 months postdischarge.

Table 2
Table 2
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Carer Interviews

No notable differences were found in carer responses over time. Carers expressed similar concerns at both intervals. However, at T2, suggestions were made for possible options that might have assisted them in the initial transition from hospital to home. Three main themes arose from the interviews: satisfaction with recovery and rehabilitation information, dissatisfaction with community services information, and frustration due to the lack of patient follow‐up postdischarge.

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Satisfaction with Recovery and Rehabilitation Information

Information collected from the carers' interviews identified that most carers (n = 11, 85%) were supplied with stroke recovery and rehabilitation information, which they found to be useful. This information was received from various staff members, including nurses, social workers, and physiotherapists. However, 8 carers (73%) stated that they would have preferred the information to have been provided by their doctor. Overall, the majority of carers (n = 10, 91%) responded favorably to the format in which the information was received and also considered the information to be easily understood. Only 2 carers (18%) expressed that they would have liked additional information.

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Dissatisfaction with Community Services Information

When asked specifically about information pertaining to support services in the community, even though all carers reported receiving this information, the majority (n = 6, 55%) did not find this information to be adequate. Carers indicated they would have liked additional information about stroke associations, carer support groups, home help, future rehabilitation options or services, and community support facilities, such as hydrotherapy. Further, the majority of all carers (n = 8, 62%) stated that they felt “let down” by the hospital discharge process because they found out about community support services only through avenues other than hospital staff, such as friends, the Internet, or other carers.

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Frustration Due to Lack of Patient Follow‐Up Postdischarge

The most notable concern held by carers was the waiting time between hospital discharge and initiating therapy in the home. Although carers were happy with the services offered by physiotherapists and occupational therapists, they were subsequently disconcerted by the lack of hospital follow‐up procedures. It was not unusual for carers and stroke survivors to wait up to 3 weeks after discharge before being contacted again about home care. A number of carers felt abandoned during this period and that the stroke survivor had “gone backwards.” Others expressed the need for better communication between hospital and patient to clarify the procedures involved before therapy in the home could begin (e.g., patient waiting lists). It was during this stage of the interview that carers also expressed a need for more information about the recovery process. Specifically, they wanted to know how they could initiate some form of rehabilitation at home with the survivor, rather than waiting for physiotherapy or occupational therapy staff to contact them.

When asked if they were currently experiencing any particular problems in caring for their spouse or sibling, 4 carers (31%) responded “yes.” At that time, these 4 carers were waiting for rehabilitation to begin in the home and were finding it difficult to adjust to the carer role. They believed that they lacked the appropriate skills needed to support the survivor at this stage. Some carers also expressed uncertainty about whether the hospital would ever contact them. Others who had contacted the hospital themselves were left wondering whether anyone would have come at all if they had not initiated contact.

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Possible Solutions

The interview concluded by asking carers if they could think of any other support services that would help them better manage their roles as caregivers. Apart from reiterating the need for better follow‐up procedures, many carers said they would have benefited from more practical information regarding

* symptoms to be aware of (i.e., what level of recovery may be expected after 1 week, 1 month, and 6 months)

* skills needed to initiate rehabilitation in the home

* advice on affordable options for rehabilitation once hospital‐provided rehabilitation in the home had ended.

One carer also suggested having stroke survivors and carers who had been through the rehabilitation phase talk to new stroke survivors regarding recovery progress and difficulties experienced.

Carers were also asked to indicate the overall level of support they received once the stroke survivor had been discharged into the community. These responses remained the same at 3 weeks and 3 months postdischarge: 5 carers (38%) reported a high level of support, 5 (38%) reported average support levels, 1 carer (8%) reported a low level of support, and 2 (15%) reported no support.

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The healthcare profession has increasingly recognized that the support needs of stroke survivors and their carers extend well beyond the hospital stay. The current study has identified that these needs are present up to at least 3 months postdischarge and span physical and psychological domains for both carers and stroke survivors.

Stroke survivors in the current study were identified as having experienced moderate stroke as assessed by the SIS. No significant differences in stroke impact were identified between 3 weeks and 3 months postdischarge in any of the eight SIS domains. However, a study by Duncan and colleagues (1999) investigating 58 survivors of mild and moderate strokes found an improvement in each of the SIS domains over the initial 3 months once a stroke survivor was back in the community. This disparity suggests that levels of functional ability in stroke survivors who experience moderate stroke may require a longer recovery period before any significant improvement can be recognized as compared to survivors of mild stroke.

No significant differences in depressive symptoms were identified among the participants in the survivor group or the carer group over time. These findings were consistent with other published investigations that demonstrated no change in carer or stroke survivor depression levels over the first 3 months postdischarge (King et al., 2001; Smith, Forster, & Young, 2004).

The current study also found no increase in psychological well‐being for carers from 3 weeks to 3 months postdischarge. These findings conflict with those of Forsberg‐Wärleby, Möller, and Blomstrand (2004), who identified a significant increase in carer psychological well‐being 3 months following the initial crisis period. The reason for this discrepancy may be because this study considered survivors of moderate stroke (as measured by the SIS), whereas Forsberg‐Wärleby et al. investigated mild stroke. This inconsistency draws attention to a possible direct association between carer levels of well‐being and improved physical ability for stroke survivors. It would be expected that the period of rehabilitation for persons affected by a moderate stroke would be longer than for those who had a mild stroke. This may further explain why no change was detected in the current study over the 3‐month period in stroke survivors' functional ability—including the impact of stroke, depression, and quality of life—as a longer period may be required before any improvements can be recognized for moderate stroke survivors.

Uncertainty about postdischarge stroke care was the prominent concern expressed in the carer interviews. Even though discussions of home rehabilitation prior to discharge were welcomed by patients and carers, their sentiments soon changed to distress and uncertainty due to the lack of hospital follow‐up procedures. Carers found the wait to be excessively long. It took up to 3 weeks postdischarge before hospital staff contacted them about receiving occupational and physiotherapy in the home. As a result, carers became frustrated that they did not possess the skills or knowledge to enable them to engage the stroke survivor in some form of homebased rehabilitation. In addition, all but one carer expressed that had they been educated on how to begin rehabilitation in the home, they might have been able to prevent a decline in the physical and psychological state of the survivor.

The majority of carers described discharge information relating to recovery and rehabilitation as adequate, useful, and easy to understand, with 74% of all carers describing the overall level of strokerelated information as adequate or high. Previous studies investigating informational material for carers of stroke survivors had found evidence to the contrary, finding that insufficient information was available or material often was not appropriate to carers' circumstances (O'Connell et al., 2003; van Exel et al., 2005). Only when carers were specifically questioned about whether they received information on support services in their community did they identify topics that were not received as part of the discharge information. These topics included support groups and community rehabilitation services.

It is well documented that the first few weeks postdischarge are crucial to the recovery process of the stroke survivor. Given that stroke survivors are returning home from the hospital earlier than ever before, it is imperative that rehabilitation commence without delay. In the current study, the lack of psychological or physical improvement for the stroke survivor from 3 weeks to 3 months postdischarge may partially be accounted for by the lack of support on return to the home. In addition, carers being illequipped to deal with the survivor and the lengthy waiting period before initiation of physiotherapy and occupational therapy may have hindered not only the survivors' recovery process but also the carers' levels of well‐being and depression. Carers should consider arranging home care through community or primary care health providers prior to discharge.

Uncertainty about postdischarge stroke care was the prominent concern expressed in the carer interviews.

Recommendations from this investigation include potential methods to overcome unmet needs, especially during the time between discharge and commencement of rehabilitation services in the home, by

* implementing education sessions on how carers can participate in care—to be introduced by physiotherapists or occupational therapists prior to patient's discharge from the rehabilitation unit

* developing discharge care plans that would support the carer

* engaging experienced carers to educate and inform new carers of stroke survivors

* introducing weekend leave from the rehabilitation unit to increase carer confidence by increasing patient and carer awareness of the level of disability and the type and level of care required to facilitate a smooth transition back into the family home.

Future research is required to explore methods for early intervention of carer and survivor depression to determine effects on patient and carer outcomes. One such method could be by using interventions such as family organizer services. Considering that survivors of moderate to severe stroke may require longer periods of care to show improvements, it would be of interest to follow up with stroke survivors at 6 months and 12 months postdischarge from inpatient rehabilitation to assess what progress has been made.

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The current study has two potential limitations. First, participants were given the option of being interviewed together or separately, which resulted in all interviews being conducted in the presence of both the stroke survivor and carer. This may have influenced some responses, but the extent to which this altered the content of the interviews cannot be estimated. A level of internal consistency was achieved; all interviews were conducted by the same interviewer. Second, the generalizability and likelihood of replication of the findings may be limited because of the small sample size, the exploratory nature of the analyses, and the sample selection of stroke survivors (i.e., those independent enough to be discharged home).

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There were no significant changes in stroke impact for survivors or for levels of well‐being and depression in either the carer or the stroke survivor over time. The only exception was the physical wellbeing in the stroke survivor. These results may suggest that early discharge from the hospital and inadequate discharge planning following stroke impede both carers' and stroke survivors' ability to adjust to and cope with their dramatically changed lives. However, it should be noted that this result may also be due to a period of 3 months not being sufficient time for significant signs of improvement to be detected in survivors of moderate stroke and their carers.

The findings presented in this study indicate that improvements have been made with regard to general stroke information. Participants rated discharge information as useful as compared to a previous Victorian (Australia) study in which stroke discharge information was described as insufficient (O'Connell et al., 2003). However, once back in the community, carers feel abandoned and lack the skills necessary to fulfill their caregiving role. Although carers did receive information about the availability of stroke support services, most found this information to be inadequate. Rather than being told of these services by hospital staff, many learned of these services from friends or the Internet. Key areas identified as insufficient were community rehabilitation services and support groups.

It is essential that the education of stroke patients and their carers becomes an integral component of stroke management for the following reasons: stroke survivors are being discharged earlier from inpatient rehabilitation; carer needs are becoming increasingly complex; and stroke survivors' and carers' quality of life levels are lower while their depression levels are higher than Australian norms, most notably for the survivor. Furthermore, it is important for healthcare professionals and researchers to give more attention to carer‐focused discharge planning, as failure to do so may result in adverse rehabilitation outcomes including either readmission or institutionalization of the stroke survivor.

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We would like to acknowledge the research nurse involved in this project, Christine Lynch, for her assistance with various aspects of this project including recruitment and interviewing of participants and data entry. We extend our gratitude to all the participants for their time and input. Without their contribution, this study could not have been conducted. Additionally, we would like to thank the nurse unit mangers for their contributions in the recruitment of participants: Carol Barker, Alix Howard, Jill Dunn, Shirley Choong, Rani Govender, and Helen Marsham. This research was funded by a grant from the Faculty of Health and Behavioural Sciences, Deakin University.

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© 2007 American Association of Neuroscience Nurses