Journal of Neuroscience Nursing:
Dimensions of Uncertainty After Stroke: Perspectives of the Stroke Survivor and Family Caregiver
White, Carole L.; Barrientos, Rosalinda; Dunn, Kelly
Questions or comments about this article may be directed to Carole L. White, PhD RN, at email@example.com. She is an Associate Professor at School of Nursing, University of Texas Health Sciences Center at San Antonio, TX.
Rosalinda Barrientos, BSN, was a Baccalaureate Nursing Student at the time of this study at School of Nursing, University of Texas Health Sciences Center at San Antonio, TX.
Kelly Dunn, RN PhD, is an Associate Professor at School of Nursing, University of Texas Health Sciences Center at San Antonio, TX.
This study was funded by the Dean’s Award, School of Nursing, University of Texas Health Science Center at San Antonio.
The authors declare no conflicts of interest.
ABSTRACT: Background: There has been limited examination of uncertainty after stroke. The effects of stroke extend beyond the stroke survivor to impact on the family, and thus, an exploration of uncertainty with the stroke survivor–caregiver dyad is important to gain a fuller understanding. Methods: Stroke survivors and their family caregivers (n = 33) participated in eight focus groups. Transcripts from the focus groups were examined for recurrent themes using content analysis. Mishel’s theory of uncertainty was used as a framework to classify the themes. Results: Participants reported uncertainty about (a) future events, in particular, recurrent stroke; (b) signs and symptoms of stroke; (c) stroke risk factor management; and (d) resources for poststroke care. The uncertainty was brought on by the lack of predictability of these future events, lack of information, and the complexity of poststroke care and corresponded to Mishel’s four key elements of ambiguity, deficient information, lack of clarity, and unpredictability. Conclusions: The fear of recurrent stroke was a pervasive theme and may represent a window of opportunity to work actively with stroke survivors in managing their risk factors. Although certain aspects of uncertainty after stroke cannot be eliminated, we can intervene with stroke survivors and family caregivers to assist them in reframing their responses to uncertainty and to foster coping and promote health.
Stroke is the most common cause of adult disability. Stroke survivors may be left with a variety of physical, emotional, and cognitive deficits that can affect all aspects of life from basic activities of daily living to social and work-related activities (Johnston, Pollard, Morrison, & MacWalter, 2004). Most stroke survivors report a decrease in quality of life after stroke, and this appears to be true even for individuals who have experienced minor strokes (Hackett, Duncan, Anderson, Broad, & Bonita, 2000; Lai, Perera, Duncan, & Bode, 2003; Lai, Studenski, Duncan, & Perera, 2002; Mayo, Wood-Dauphinee, Cote, Durcan, & Carlton, 2002). The effects of stroke extend beyond the stroke survivor to impact on the family (Bakas, Kroenke, Plue, Perkins, & Williams, 2006; Green & King, 2009; White, Poissant, Cote-LeBlanc, & Wood-Dauphinee, 2006). The sudden onset of stroke implicates the family caregiver unexpectedly into a new role and contributes greatly to caregiver distress (Cameron & Gignac, 2008). Concomitant to coping with the acute changes related to the stroke event, the family caregiver may be required to learn new skills and make adaptations to their physical environment, all within a short period, to safely manage their loved one in the community.
The risk of recurrent stroke is high, with 5-year stroke recurrence rates as high as 30% (Sacco et al., 2006). It is not surprising then that the fear of a recurrent stroke has been a consistent finding in studies examining the poststroke experience for both stroke survivors (Carlsson, Moller, & Blomstrand, 2009; Martin, Yip, Hearty, Marletta, & Hill, 2002; Townend, Tinson, Kwan, & Sharpe, 2006) and their family caregivers (Gosman-Hedström & Dahlin-Ivanoff, 2012; Greenwood, Mackenzie, Wilson, & Cloud, 2009). In a study with 81 stroke survivors interviewed at both 1 and 9 months after stroke, over half of the participants reported fear of recurrent stroke (Townend et al., 2006). At 1 month after their stroke, the participants reported that their fear of a recurrent stroke was related to experiencing more severe disabilities, and some expressed the view that death would be preferred to a recurrent stroke. Greenwood and colleagues interviewed 31 caregivers of stroke survivors at 1 and 3 months after the stroke survivor was discharged from the hospital to investigate their experience in the early poststroke period. Similar to the stroke survivors, at both interviews, fear of recurrent stroke was a common theme expressed among caregivers.
In addition to uncertainty about the future, of which recurrent stroke is a prominent theme, stroke survivors and family caregivers have also reported other aspects of uncertainty after stroke. Caregivers have reported uncertainty related to the extent of their loved one’s recovery and to the impact of the stroke event on their lives and their ability to cope and also regarding the levels of formal support that they would receive (Greenwood et al., 2009; Hunt & Smith, 2004). On the basis of their analysis of interviews with 18 stroke survivors describing their experience during the first year after stroke, Carlsson and colleagues identified a core category of “striving to manage an everyday life of uncertainty.” Within this care category, they defined three subcategories: individual concerns of coping, relational concerns of coping, and environmental conditions for coping.
The emergence of uncertainty as an important component of the poststroke experience warrants further study (Salter, Hellings, Foley, & Teasell, 2008). Although qualitative studies conducted with stroke survivors as well as studies conducted with caregivers have described certain elements of uncertainty (Carlsson et al., 2009; Gosman-Hedström & Dahlin-Ivanoff, 2012; Greenwood et al., 2009; Hunt & Smith, 2004; Martin et al., 2002; Townend et al., 2006), there has not been a systematic examination of this concept, specifically with the stroke survivor–caregiver dyad. Given the reciprocal relationship between the stroke survivor and the caregiver in adapting to the consequences of stroke, a fuller understanding of uncertainty after stroke can be gained from their joint perspective.
The purpose of this qualitative descriptive study is to describe the dimensions of uncertainty after stroke described by stroke survivors and their family caregivers and the strategies they use to cope with their uncertainty. To provide a framework for categorizing the dimensions of uncertainty expressed by participants, Mishel’s theory of uncertainty and the key factors that illustrate the experience of uncertainty were utilized (Mishel, 1981, 1988). Mishel investigated the role of uncertainty as one of the conditions producing stress in hospitalized patients and further extended the theory to those with chronic illness. Uncertainty may not be resolved in those with chronic illness, and thus, how uncertainty is appraised and reappraised is important.
Focus groups were held with stroke survivors and their family caregivers. Focus groups were chosen as the method of data collection as they encourage interaction among participants, which may in turn trigger additional thoughts and help participants to more fully discuss the topic of interest.
Using purposive sampling methods, participants were recruited from a stroke clinic and an outpatient rehabilitation unit. Eligible stroke survivors (a) sustained an ischemic or hemorrhagic stroke in the past year, (b) were living in the community after their stroke, (c) reported residual deficit from their stroke, (d) had sufficient cognitive and auditory capacity to participate in focus groups as determined by a brief screening interview, and (e) spoke English or Spanish. Family caregivers, if available, were also invited to participate. To be eligible for participation, the caregiver must (a) have sufficient cognitive and auditory capacity to participate in focus groups as determined by a brief screening interview and (b) speak English or Spanish. Ethnic minorities were targeted in the recruitment to ensure adequate representation in the focus groups.
This study was approved by the institutional review boards of the participating hospitals, and all participants provided informed consent.
The participants attended a scheduled English or Spanish focus group, according to their preferred language. The intent was to recruit approximately six to eight participants per focus group. An experienced facilitator ran each group, with an observer taking notes. All but one of the focus groups was audiotaped. The first focus group was not audiotaped related to equipment failure, but detailed notes were available. A semistructured topic guide, utilizing input from clinicians and researchers working with patients with stroke, was developed as a basis for the focus group discussions. The research assistant was bilingual, and a bilingual doctoral student facilitated the Spanish-speaking focus group.
At the beginning of each group, the participants completed a short questionnaire providing demographic information as well as information on the care needed and the availability of community support. Semistructured questions including the challenges they have faced since the stroke, factors most important to helping them manage their poststroke care, and specific questions related to risk factor management helped to guide the discussion. Participants were also asked to discuss the services and support for both the stroke survivor and the caregiver and to comment on the most important things that the healthcare community can do to help people manage after stroke. Participants were encouraged to expand on their experiences and discuss anything they thought relevant to the challenges they faced and their experience of managing their vascular risk factors that were not addressed in the specific questions asked by the facilitator as well as other concerns that were important to them.
Analysis was an ongoing process that started concurrently with data collection. The focus groups were transcribed verbatim from the audiotapes and examined for recurrent themes using a content analysis procedure (Dilorio, Hockenberry-Eaton, Maibach, & Rivero, 1994). The investigator and research assistant who conducted the focus groups and a third researcher not involved in the conduct of the focus groups participated in the analysis. In addition, the Spanish-speaking facilitator assisted with the analysis of the data from the Spanish focus group, which was analyzed directly in Spanish and not translated into English. A qualitative content analysis was undertaken. The research team met to analyze the first focus group transcript and to develop both the process for coding and the set of initial codes. Although the overall purpose of the study was to gain an understanding of how patients and caregivers manage vascular risk factors in the community and to explore potential avenues for technology to enhance risk factor management, with reading of the first transcript, data related to uncertainty after the stroke emerged as a dominant theme. Mishel’s definition of uncertainty, “the inability to determine the meaning of illness-related events” (Mishel, 1988), served as a sensitizing framework (Charmaz, 2006) that guided our examination of the data. Additional focus groups were read by the team, data related to elements of uncertainty were further refined, and emerging themes were identified. The key factors related to uncertainty as described by Mishel (1981) and McCormick (2002) in their concept analysis of uncertainty—ambiguity, deficient information, lack of clarity, and unpredictability—provided an organizing framework for the themes identified from the focus groups. Mishel and McCormick provide detailed definitions and illustrative examples of each of these key concepts. The research team discussed the themes from the data, reviewing the illustrative quotes from the participants, and independently linked the themes from the data to the four key elements of uncertainty. Through discussion, we were able to come to a consensus. From a review of the transcripts, it was clear that several themes corresponded to more than one key element.
Eight focus groups were held with 33 stroke survivors and their family caregivers. Because of scheduling difficulties, focus group size ranged from two to eight participants, with an average of four participants per group, and lasted from 90 to 130 minutes. There were seven English-speaking groups and one Spanish-speaking group. Most stroke survivors were men (78%), whereas most caregivers were women (87%; Table 1). The mean (SD) ages of stroke survivors and caregivers were 57 (8.7) and 56 (14.2) years, respectively. Most caregivers were the spouse of the stroke survivor (73%), and most caregivers (87%) lived with the stroke survivor. Whereas almost half of the participants were White, 42% were Hispanic, and 12% were Black. Median time since stroke was 7 months, and for almost half of the stroke survivors, the current stroke was a recurrent stroke.
The following themes related to uncertainty were reported by both stroke survivors and their caregivers: (a) uncertainty about future events, in particular, recurrent stroke; (b) uncertainty about the signs and symptoms of stroke; (c) uncertainty about management of stroke risk factors; and (d) uncertainty about resources for poststroke care. There were no differences in these main themes between the seven English and one Spanish focus groups. These four themes were categorized under Mishel’s four key elements of uncertainty, as can be seen in Figure 1. Several themes fell under more than one element of uncertainty.
Uncertainty About Future Events
Uncertainty concerning the future was a consistent theme across focus groups. Both stroke survivors and their caregivers discussed many elements of uncertainty related to future events, which included the risk of a recurrent stroke, their level of recovery, and their financial future. Stroke survivors and caregivers frequently described their worries about a recurrent stroke. One caregiver described it this way: “But that feeling inside you does not go away. It just doesn’t go away. It’s in there somewhere. It manifests itself in there somewhere. I mean, I don’t think about it every moment of everyday, but there’s not any part of the day where that thought is far away like is something going to happen today…. I mean who knows.” In the event of a recurrent stroke, they were still left with uncertainty about how they would adjust to the new changes: “It’s just readjusting again. You know, here we go again. What are we going to be facing?”
The constant worry about recurrent stroke was particularly expressed by caregivers, who described their fear of leaving their loved one alone and their vigilance in watching over them: “the first month when he got home from the hospital in July, it was pretty much 24–7 watching him.” An older mother who was caring for her aphasic son described how she shortened her errands so she could be home more quickly and her worries about whether her son would be able to call for help if he had a recurrent stroke related to his aphasia. This quotation from a caregiver reflects the uncertainty about the future expressed by many participants: “What are the next 20 years of our life going to be like? Are we going to have another year? Are we going to have another 20 years?”
Participants also expressed uncertainty related to their recovery from stroke. When they felt they had reached a plateau in their recovery, this also led to uncertainty related to what the future held for them: “And so I was abundantly depressed thinking that this is going to be my life. And that I wouldn’t be able to walk.”
Participants also described uncertainty related to the financial implications of a stroke. The medical expenses related to the stroke were compounded in situations where the stroke survivor was no longer able to work and, in some cases, where the caregiver left work to care for the person with stroke: “Calling about the doctor bills, you know getting them paid…figuring out the finances. He only took short term disability so when that runs out we’re down to one income…so that’s extremely scary for me…he doesn’t seem to be as worried about it as I am.”
Uncertainty About the Signs and Symptoms of Stroke
Participants expressed uncertainty related to the signs and symptoms of stroke. Even those with recurrent stroke expressed a lack of recognition of the specific signs and symptoms, particularly if the symptoms of the recurrent stroke were different from the initial stroke. Both the caregiver and the stroke survivor expressed the importance of knowing the signs and symptoms and felt that the healthcare system had neglected, in some instances, to provide specific information about stroke although they were at high risk. One stroke survivor stated the following: “Literally, um but then when the stroke occurred I didn’t recognize it as a stroke…. He (my doctor) told me I was going to have one, but no he never sat down and said ok this is what you better be watching out for.” Another stroke survivor stated that, even at discharge from the hospital, he was not provided with specific information about the signs and symptoms of stroke: “Yeah…nobody sat down and said you know what, you need to be looking for this, look out for these symptoms or this or that. Nope.”
Uncertainty About Management of Stroke Risk Factors
Although most stroke survivors and caregivers were well aware of their risk factors for stroke, they described their uncertainty about their own ability to manage their risk factors and whether they were doing enough to prevent a recurrent stroke. Caregivers discussed their important role in risk factor management and also expressed uncertainty about whether they were doing the right things. A recurrent theme related to risk factor management was the number of medications they were taking and whether they were really effective. Whereas some stroke survivors discussed the importance of regular follow-up with their physicians to monitor their risk factors and to make sure they were on track, others expressed confusion over seeing a number of different physicians and the lack of continuity and communication in their care: “No, and that’s what I don’t like cause I quit going. Cause this one would give me something, this one would take it away or add more to it, and by the time I knew it, I don’t know what was working and what wasn’t.”
Participants who sustained a recurrent stroke also expressed uncertainty about what they may have missed in their management, which could have led to the recurrent stroke, despite thinking they were doing everything ”right” after their first stroke. A stroke survivor of three recurrent strokes described it this way: “It’s just that you know logically I think…. I know we were doing what were supposed to be doing, technically. But it’s still…it’s like something there like what else can I push to where we can you know…keep this at bay.”
Uncertainty About Resources for Poststroke Care
Participants discussed lacking information about where to go to find resources and also uncertainty about what was actually available for them. A common expression of feeling “left floating by yourself” was expressed by participants across focus groups. As participants discussed what resources and care they had received after their stroke or what they felt they should have received, it was apparent that different participants had different pieces of information about resources, but there was great variability depending on the hospital where the stroke care had been delivered, where the individual lived, and also, their insurance status. For example, participants living in some parts of the city had access to transportation to therapies and appointments, whereas this was not available to those in other areas of the city. This recurring theme was described by one participant in the following manner, “You know people that have strokes they don’t know where to go or they don’t know what programs are out there to help them. Or they don’t or we don’t know any…where do I go to get help? What do I need? Or how do I get this? Nobody tells you.” Caregivers also talked about their uncertainty in taking on this new role and about the resources that were available to them: “Am I doing things right? They should have a group there for the family members. To explain what a stroke is. What it does to a person. And what they can do to help them.”
Strategies Described by Participants to Cope With Their Uncertainty
Many participants and their caregivers described their mechanisms for coping with their feelings of uncertainty.
Focusing on the Present
To keep their uncertainty about the future at a manageable level, participants talked about living 1 day at a time with a focus on the present and did not allow themselves to make distant future plans. This was expressed by both stroke survivors and caregivers. This also allowed them to focus on the primary task of consistently managing their risk factors and to accept that they were doing all they could. “I mean if what happens is going to happen…if we’ve done everything we can possibly do to stop it from happening, then I think it’s just the next level is just to prepare yourself.”
Finding “New Norms”
For the most part, it was caregivers who described the necessity of not looking to the past and how things were but making an adjustment to the stroke event, described as finding “new norms.” They changed their lifestyles to adjust to the stroke and its consequences and also changed their expectations. “And trying to figure out ways how we are going to improve our life because life as we known as I mentioned to you earlier has changed. We have a new norm that we didn’t have before.”
Both stroke survivors and caregivers discussed the importance of gaining information about stroke and its consequences as an important strategy for dealing with their uncertainty. They specifically talked about the signs and symptoms of stroke, medication management, and home devices such as alert systems to help manage their uncertainty about their loved one when they were out of the house. “You arm yourself with as much knowledge as much as you possibly can, try and get the cooperation as much as you can, and then go with it.” They also talked about the responsibility of the healthcare system to provide them with anticipatory information to help with their feelings of uncertainty. “If a person goes through a stroke I think you know the doctor or someone should talk to the person and say hey you know what, you just went through a medical condition or whatever. You might be going through this or might be going through that. And the person will think about that you know ahead of time instead of going through it and not knowing.”
This study describes the dimensions of uncertainty expressed by stroke survivors and their caregivers at approximately 1 year after stroke. The elements of uncertainty outlined by Mishel (1981; ambiguity, deficient information, lack of clarity, and unpredictability) provided a framework for categorizing the dimensions of uncertainty and also highlight opportunities for interventions designed to foster coping and promote health among stroke survivors and their family caregivers.
Ambiguity was identified in several dimensions of uncertainty including the signs and symptoms of stroke. Those who suffer a stroke are at particularly high risk for a subsequent event (Hardie, Hankey, Jamrozik, Broadhurst, & Anderson, 2004). Given their increased risk, it would be expected that stroke survivors would have a high level of stroke awareness and knowledge of the appropriate actions to take. A recent study with 2,970 adults with prior stroke from the 2003 Behavioral Risk Factor Surveillance System reported that only 26% recognized all five warning signs and would call 911 as an appropriate first action if someone was having a stroke (Ellis & Egede, 2008). There were significant racial/ethnic differences in stroke awareness with only 17% of Hispanics recognizing all five warning signs and the appropriate action compared with 29% of Whites and 22% of Blacks. Similarly, participants in this study did not feel confident in their knowledge about stroke symptoms and expressed ambiguity regarding the appropriate actions to take in the event of a stroke. Even in the event of a recurrent stroke, participants expressed ambiguity about the symptoms, particularly if they were different from the first stroke event. These findings point to the need for more targeted interventions to increase stroke awareness, both at the time of discharge and over time, with attention to issues of health literacy and culture. An ongoing clinical trial is investigating strategies to increase stroke preparedness and will provide evidence regarding optimal interventions (Boden-Albala et al., 2010).
Participants consistently described deficient information, specifically in regards to the signs and symptoms of stroke, management of stroke risk factors, and resources for poststroke care. Stroke survivors and caregivers recognized the importance of information to manage their uncertainty. The provision of appropriate, accurate, and timely information is a critical component of poststroke management, yet research continues to demonstrate gaps. Studies continue to report unmet needs related to information about risk factor management and poststroke care, with lack of information increasing the caregiver’s uncertainty (Hunt & Smith, 2004; O’Connell, Baker, & Prosser, 2003; Wallengren, Segesten, & Friberg, 2010; White et al., 2007). In a study with 31 caregivers of stroke survivors conducted in the first 3 months after the stroke survivor was discharged from the hospital, caregivers reported uncertainty related to the extent of their loved one’s recovery and to the impact of the stroke event on their lives and also regarding the levels of formal support that they would receive (Greenwood et al., 2009). A recent Cochrane review on information provision for stroke survivors and their caregivers highlighted the importance of active information provision in contrast to passive provision on both anxiety and depression scores (anxiety: p < .01, depression: p < .02; Smith, Forster, & Young, 2009). The results of this review also highlight the importance of providing situation-specific information in contrast to more generic information along with planned follow-up for clarification and reinforcement.
Lack of clarity surrounding the management of stroke risk factors was described by both stroke survivors and caregivers and led to uncertainty about whether they were doing the right things and in sufficient doses to prevent a recurrent stroke. Participants described a lack of communication between health professionals, particularly regarding medication management, that further contributed to their lack of clarity. Reducing vascular risk factors is a complex process that requires continuity in the care provided, in many cases, by multiple practitioners. Case management, a model of integrated service delivery, may be a useful strategy to be applied to those with stroke to ensure continuity around risk factor management and facilitate recovery (Cameron, Tsoi, & Marsella, 2008). Case management could also address the support needs of family caregivers who described uncertainty related to their caregiving role after stroke and a lack of awareness of the community services available to them and how to access those services.
Unpredictability related to the level of recovery after stroke and stroke recurrence were consistent themes across the focus groups. The patients’ perspective about stroke and recovery is important as it may influence their emotional adjustment and adherence to medical recommendations. Several studies have reported the uncertainty stroke survivors experience about whether they will recover to their former abilities, need to adapt to their present disability, or wait for recovery (Carlsson et al., 2009; Salter et al., 2008). The overall mean age of 57 years of our sample was younger than the average age of approximately 70 years reported overall for stroke (Rothwell et al., 2005). Their overall goal of returning to their previous working state, recovering fully, and preventing future strokes was a high priority for these individuals. Attempting to bring life back to its previous state was seen as a way to ameliorate their uncertainty about the future. Their uncertainty of experiencing a recurrent stroke served as an important motivator in their commitment to risk factor management. When a return to their previous way of living was not possible, both stroke survivors and caregivers described adjusting to new norms.
Similar to what has been reported in the literature (Carlsson et al., 2009; Gosman-Hedström & Dahlin-Ivanoff, 2012; Greenwood et al., 2009; Martin et al., 2002; Townend et al., 2006), the fear of another stroke preoccupied both the stroke survivor and the caregiver. Healthcare professionals can reframe this unpredictability as a window of opportunity to motivate patients to take action to adopt healthy behaviors and reduce the risk of subsequent stroke (Carlsson et al., 2009). It is also critical to address their fears and anxiety related to stroke recurrence as they may strongly influence the outcomes related to adoption of secondary prevention behaviors.
There are several limitations that need to be acknowledged as they have the potential to influence the findings. Including both stroke survivors and caregivers in the focus groups may have constrained the caregiver and the stroke survivor from speaking freely about their situations. However, the discussion was very animated, and this did not appear to be the case. It was difficult to schedule the focus groups, and some were smaller than originally planned; this may also have affected the information gathered from the groups.
In conclusion, this study contributes to our understanding of uncertainty after stroke from the joint perspective of the stroke survivor and the caregiver and provides a framework for interventions that will decrease certain elements of uncertainty such as insufficient information and lack of clarity that contribute to their perceptions of uncertainty. Although we cannot change their uncertainty related to a recurrent stroke, we can assist stroke survivors in reducing their risk through effective management of their risk factors and also provide them with strategies to cope with their uncertainty.
We gratefully acknowledge the stroke survivors and caregivers who participated in the focus groups and Herlinda Zamora who facilitated the Spanish-speaking focus group.
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family caregiver; qualitative descriptive research; stroke survivor; uncertainty
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