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Problems of New Caregivers of Persons with Stroke
Nine adult caregivers new to the role of caring for persons with stroke, upon discharge from rehabilitation centers in Ohio and Michigan and living farther away from formalized support services than urban caregivers, were enrolled for 3 months in a Web-based intervention project that examined the feasibility of the intervention and described the experience of caring. This article is an analysis of qualitative data from the intervention project that used a rigorous protocol to examine 68 perceived problems reported in caring. Problem themes in order of most to least frequent were 1) having independence issues, 2) dealing with emotions, 3) living with physical limitations, 4) managing co-morbid conditions, 5) balancing it all, 6) participating in physical therapy, and 7) having sleeping issues. These problems were related to four of Orem’s universal self-care requisites. Although the total number of problems decreased over time, “balancing it all” was the only problem that increased. This may be due to the resumption of the caregivers’ regular activities or increased caregiving responsibilities. Nurses could use these findings to identify and focus on self-care needs of caregivers and to implement problem-resolution strategies.
More than 700,000 new and recurrent strokes occur in the United States each year, and stroke is a leading cause of serious, long-term disability. An estimated $56.8 billion a year is spent on direct and indirect costs of these strokes (American Stroke Association, 2005a). The cost of family reparations is even greater because 4 out of 5 families experience dealing with the emotional and physical consequences of stroke over the course of a lifetime (National Stroke Association, 2005). Regardless, most Americans believe that home, rather than a long-term care facility, is the best place for family members who are disabled or ill. As caregivers, they need and expect help in providing care for their family members (Kelly, 1994; Metlife, 2003; Wykle & Segal, 1991).
It is critical to understand the first few months of caregiving for a person with stroke. Stroke is a medical emergency in which caregivers have to adapt to their new role quickly, unlike situations in which caregivers deal with chronic conditions that progressively deteriorate over time (Brereton & Nolan, 2002). The major period of recovery from stroke tends to occur during the first 3 weeks to 18 months (ASA, 2005b; Han & Haley, 1999). It may be difficult for caregivers to adapt to their role because the health status of the person with stroke continues to change over time. The changes that accompany stroke may create considerable problems for caregivers (Kotila, Numminen, Waltimo, & Kaste, 1998), and caregivers’ ability to provide effective caring may decline (van den Heuvel, de Witte, Schure, Sanderman, & Meyboom-de Jong, 2001). Their issues are important, such as sudden, unexpected role changes, along with changing care needs and their ability to meet them.
Caregivers reported that persons with stroke needed help with personal care, domestic chores, and financial help (Addington-Hall, Lay, Altmann, & McCarthy, 1998; Chang & White-Means, 1991; Metlife, 2003; Moore, Malocco, Schmidt, Guo, & Estes, 2002). Problems with physical and emotional strain were brought on by caregiving (Kerr & Smith, 2001). Common physical problems reported by 30%–50% of the caregivers were feeling tired, headaches, stiff joints, and trouble falling asleep (White, Mayo, Hanley, & Wood-Dauphinee, 2003). Issues with emotions and behavior were the most frequently reported concern or need reported by caregivers (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002). According to Bugge, Alexander, and Hagen (1999), increased time spent just visiting with the person with stroke was correlated to decreased levels of caregiver strain; whereas increased time spent providing care to the care recipient was correlated with higher levels of strain. As these relationships might imply, increased stroke severity was also significantly associated with increased caregiver strain (Bugge et al.). Young caregivers were at increased risk for burnout (van den Heuvel et al., 2001), whereas Blake and Lincoln (2002) found higher levels of strain among caregivers who cared for younger persons with stroke.
Caregivers desire a return to normal conditions. They readily identified needed characteristics for caregiving, but they were less able to identify their own caregiving strengths. Overall, the experience brought care recipients and caregivers closer together with the care recipients’ condition generally described as positive (Moore et al., 2002). Nevertheless, according to Addington-Hall et al. (1998), caregivers reported severe restriction of their activities and only one-third of them found that the experience was rewarding. Spouses and those caring for persons who were depressed or anxious found the caregiving experience especially stressful.
This study is part of a Web-based intervention project that examined the feasibility of the intervention and explored the experience of caring for new caregivers of persons with stroke. Steiner and Pierce (2002) described in detail the education and support components of this Web-based intervention. Briefly, its components include a) Ask the Nurse, caregivers can e-mail and ask questions of and receive answers from a nurse specialist; b) Caretalk, caregivers can discuss areas of interest with and receive help from other caregivers and the nurse via an e-mail support group; c) Tip of the Month, caregivers can obtain customized information about stroke and caring; and d) Educational Links, caregivers can obtain reliable educational information on a variety of topics from linked Web sites. Steiner, Pierce, and Herceg (2004) studied the results of an evaluation of this Web-based intervention. Whereas Pierce, Steiner, Govoni, Hicks, Thompson, and Friedemann (2004) reported the caregivers’ satisfaction with this intervention and their experience of caring that was reported by them on Caretalk, the discussion and support group component of the intervention.
The purpose of this study is 1) to identify perceived problems of new caregivers while caring for persons with stroke during their first 3 months of caregiving in home settings and 2) to explore whether these problems changed during this time. This study is important because it focuses on perceived problems of new caregivers dealing with stroke, as well as examines dimensions that were previously not analyzed or reported from the Web-based intervention project.
Orem’s (2001) self-care deficit nursing theory was the theoretical framework applied to this study after the data were obtained. Orem’s theory is “a general theory of what nursing is and what nursing should be as it is produced in concrete nursing practice situations” (p. 136). Persons with stroke rely on caregivers for support of their healthcare needs or requisites because of their impaired self-care ability and increased self-care demands. Caregivers may experience problems while meeting the increased self-care demands of the person with stroke. Caregivers’ self-care demands may increase secondary to the level of their self-care agency or to the care recipients’ state of health deviation.
After approval of university and hospital institutional review boards, 9 participants were enrolled in the Web-based intervention project from northwestern Ohio and southeastern Michigan. These participants lived farther away from formalized support services than urban caregivers (i.e., at least 30 min away from a level-1 trauma center but within a 50-mile radius from a metropolitan area). However, the caregivers in this project did not perceive themselves as “rural” (Pierce et al., 2004).
All participants took part in a Web-based education and support intervention (Pierce et al., 2004; Steiner & Pierce, 2002). Bi-monthly telephone calls were used to collect data from these participants over a 3-month period. There was an initial baseline interview to collect demographic data such as gender, age, ethnicity, and employment. The interviews continued in week 2 and concluded in week 12 of the caregivers’ participation. The interviewer initiated the telephone calls and each call lasted approximately 20 min. The bi-monthly frequency of the calls was used to promote the caregivers memory recall of incidents related to caring. To increase reliability, the same questions were used to survey caregivers (i.e., their well-being and healthcare resources needed as well as problems and successes reported in caring). This study focused on the caregivers’ responses to the question concerning problems asked at weeks 2–12 of the intervention. This question was “Did you have any problems in caring for your loved one during the past 2 weeks? If yes, tell me about each problem.” The definition of the word “problems” was interpreted by the caregivers. The interviewer probed by using open-ended questions to facilitate knowing about the problem identified to the fullest extent possible. This interview process helped to establish data credibility, in that the prolonged engagement of one interviewer with the caregiver participants built trust over the 3 months and allowed for informal checking of the information immediately reported by the caregivers. The telephone interviewer directly transcribed the participants’ verbal answers as they were spoken into a Web-based data form.
Analysis of the narrative interview data was completed by using only the information that was communicated to the interviewer without allowing the bias of the investigators’ preconceived ideas to affect the information. To prevent bias associated with preconceived ideas about caregivers’ problems in caring for someone with a stroke, eidetic reduction or bracketing was implemented in this study. Bracketing required the investigators to identify and contain their self-assumptions or ideas about the phenomenon of caregivers’ perceived problems in caring before beginning the study. Bracketing allowed the interviewer to examine prejudices and remove them so the phenomenon could be observed as is and not as it might be reflected through caregivers’ preconceptions (Polit & Beck, 2003).
Research question one. What are the perceived problems reported by caregivers of persons with stroke in the first 3 months of caregiving? The four investigators reviewed these data and this also helped to establish data credibility. They used a rigorous process of content analysis (Norwood, 2000) that yielded descriptions of perceived problems identified by the caregivers. Norwood’s analysis process consists of three phrases: deductive, inductive, and integration. In the deductive phase, the investigators reviewed the participants’ descriptions to analyze them. First, all the perceived problems that were reported were read and categories or subproblems were developed. In this phase, the investigators also returned to each description and extracted significant phrases or statements that directly pertained to specific caregivers’ problems. Then, in the inductive analysis phase, the meaning of each significant statement was formulated and problem themes emerged from these formulated meanings. In the final integration phase of analysis, relationships between themes came out and were related to Orem’s (2001) universal self-care requisites by the investigators.
Research question two. Do these perceived problems change over time? The problem themes identified in weeks 2 and 4 were combined to summarize the problems that occurred in the first month of caregiving. Interviews 6, 8, 10, and 12 were combined to represent the second and third months, respectively. The percentages of problems from months 1, 2, and 3 were compared to evaluate differences.
The caregivers of persons with stroke were 5 men (56%,) and 4 women (44%) and ranged from 51–68 years, with a mean age of 60 years. The male caregivers included husbands and friends, and the female caregivers included wives and adult children. Of these caregivers, eight reported their ethnicity as White (89%) and one caregiver did not answer the question. Five caregivers (56%) worked full-time with the others not employed. Eight of their care recipients were women (89%) and ranged in age from 54 to 87 years, with an average age of 70.5 years. Seven of the care recipients (78%) were dealing with right-side brain damage with left-side impairment(s). Three care recipients (33%) were considered low functioning (cognitive and physical abilities) and the other six were considered high functioning, as based on a measure of functional independence (Center for Outcome Measurement in Brain Injury, 2004).
Caregivers’ Perceived Problems
After analyzing the data and to answer research question one, some of the caregivers had no problems to report at various interview times throughout the study. The “no problem” response made up 20.93% of caregivers’ total responses. Sixty-eight perceived problems emerged from the caregivers’ responses and referred to caregivers or care recipients. The majority of the caregivers worded their problems in such a way that usually blamed them on impairments displayed by the person with stroke. These perceived problems were merged into problem themes. The problem themes in descending order of occurrence included a) having independence issues (25%), b) dealing with emotions with sub-themes of depression and anger (19%), c) living with physical limitations (15%), d) managing co-morbid conditions (13%), e) balancing it all (12%), f) participating in physical therapy (10%), and g) having sleep issues (6%). Caregivers’ descriptions of the problems to support these themes are also noted in Table 1. The perceived problem themes were related to four of Orem’s (2001) universal self-care requisites: a) promotion of normalcy, b) maintenance of a balance between solitude and social interaction, c) prevention of hazards to life, functioning, and well-being, and d) maintaining balance between activity and rest.
Caregivers’ Perceived Problems Over Time
In answering research question two, the data revealed that the number of caregivers who perceived no problems increased from four reported in month one to seven reported in months two and three. The number of perceived problems reported by caregivers decreased over the first three months (see Table 2). There were 28 total problems reported in month 1, 21 in month 2, and 19 in month 3 that represented the 7 problem themes. In general, the caregivers perceived fewer problems as the first 3 months of caregiving passed. More specifically, problem themes of having independence issues, dealing with emotions, managing co-morbid conditions, and participating in physical therapy decreased over these first 3 months. Other problem themes of balancing it all increased and living with physical limitations and having sleep issues showed little or no changes at month 3.
Few caregivers professed shared responsibility for the problems that they perceived, and fewer yet perceived problems stemming from limitations of their caregiving abilities. The majority of caregivers worded their problems in such a way to make the care recipients the responsible party. Several possible rationales may explain this. First, the caregivers might have found it demoralizing to admit their limitations as a caregiver to the interviewer. Second, the caregivers may have set unrealistic goals for the care recipients and held them accountable when they failed to progress. Finally, the orientation of problems did not vary, perhaps because the caregivers held their care recipients accountable for perceived problems instead of adjusting to the change needed.
First, the problem theme of having independence issues indicated problems in promoting normalcy among their care recipients and consequently with their lives (Addington-Hall et al., 1998). These caregivers cited that care recipients were unable to recognize or attend to the changes the stroke caused in their daily routine. This hampered the care recipients’ progression toward independent living and led to the need for continued caregiving on the part of the caregiver. Second, caregivers perceived that their problems were related to emotions of depression or anger as experienced by both the caregivers and care recipients (Bakas et al., 2002; Kerr & Smith, 2001). Third, problems in living with physical limitations were in reference to the care recipient’s or the caregiver’s bodily conditions (Bakas et al.; Brereton & Nolan, 2002; Kerr & Smith; Moore et al., 2002). The caregivers also recognized that care recipients had other health issues that caused problems and affected their daily living. Problems managing co-morbid conditions were perceived as situational, and the caregivers’ language used to report them was less accusatory. In other words, the care recipients were held less accountable for managing the problems with co-morbid conditions than they were for their limitations from stroke.
The fifth problem theme, balancing it all, was the only problem that focused solely on the caregivers and was related to role strain (Addington-Hall et al., 1998; Bakas et al., 2002; Brereton & Nolan, 2002). Perhaps this was the only caregiver-focused problem perceived because other problems were easier to identify and to admit. In the sixth theme that emerged, caregivers perceived it as problematic when care recipients would not perform the exercise routines recommended by physical therapy. Perhaps this was due to the belief that the exercises would reverse some of the problems with physical limitations and independence issues. Another reason might be that the tangible nature of care recipients doing exercises was something that new caregivers could easily grasp and enforce. The final problem theme of having sleeping issues was the least frequently reported. However, sleep problems (e.g., falling asleep, staying asleep, and getting enough sleep) caused difficulties for both caregivers (White et al., 2003) and care recipients. Ineffective sleep patterns may result from caregivers’ physical, emotional, and financial worries, as well as being vigilant in watching over the care recipients. Care recipients’ may have also been concerned about their condition or affected by it.
Orem’s self-care requisites. The problem themes were centered in four of Orem’s (2001) universal self-care requisites including promotion of normalcy, maintenance of a balance between solitude and social interaction, prevention of hazards to life, functioning, and well-being, and maintenance of a balance between activity and rest. Some of Orem’s universal self-care requisites were not represented in the problem themes. These requisites were maintenance of sufficient intake of air, water, and food, as well as provision of care associated with eliminative processes and excrements (Orem). It is probable that the absence of these universal self-care requisites is directly related to the stability of care recipients who had been discharged home. Persons with stroke with an insufficient intake of air, water, and food, or severe problems with elimination or excretion would have remained hospitalized to meet these most elementary needs.
Problems Over Time
Fewer problems were perceived by caregivers related to four of the problem themes. There were less reported problems in having independence issues and in managing co-morbid conditions in month 3 than in months 1 and 2. This change in problems over time could be due to a natural progression of caregivers learning and implementing their role in meeting the needs of persons with stroke, the improvement of cognitive and physical function or improvement in co-morbid conditions of care recipients, or the caregivers’ adaptation to care recipients’ limitations.
The Web-based intervention, in that educational information or emotional support were provided to the caregivers, may have impacted these findings. In addition, anger, as a subset of dealing with emotions, was another problem that decreased. This finding was not surprising because this follows the stages of Kübler-Ross’ stages of grief. According to Kübler-Ross, anger is the second stage of grief which eventually resolves into acceptance (Nix, 2003) and the caregivers may have reached that point in time. Another assumption is that this finding may be due to the Web-based support group, as the caregivers discussed how they dealt with their emotional problems. Perceived problems with participation in physical therapy also declined. One explanation may be that caregivers were successful in getting the care recipients to institute a routine for doing their exercises. Other reasons might be that care recipients’ physical abilities improved over time and they no longer required physical therapy.
Balancing it all was the only problem theme to increase in the number of reported problems over the first three months. This could be secondary to the caregivers’ increasing obligations and commitments to people and events outside of caregiving, such as job responsibilities (Addington-Hall et al., 1998). At month 3, they were still searching for a comfort level with the situation, but had not reached it.
There were inconsistent directional trends in the number of problems reported in only two of the other problem themes. Problems living with physical limitations decreased in month 2, but then increased again in month 3. The dip in month 2 may be explained by the care recipients’ probable improvement from month 1. Physical limitations may have become problematic again in month 3, if progress was not continued at the same pace as in month 2. And finally, having sleep issues increased in month 2, but returned to the month-1 level in month 3. This may be due to the increasing stability of the impact of stroke and their overall environment. For example, caregivers and care recipients may have established a consistent daily routine that assisted in alleviating problems with sleep.
Implications and Conclusions
The reader must decide if these findings have applicability to their caregiver population because this was a small study in Ohio and Michigan with mostly White caregivers who were all receiving the education and support intervention. The investigators have provided a detailed account of data collection and analyses, as well as the findings, to allow for the reader to replicate this study. Recommendations for future research include examining other caregivers to note differences in perceived problems in caring that may be related to ethnic and cultural aspects of caring or geographical settings outside the mid-western United States. In addition, research studies over longer periods of time have the potential to aid in understanding caregivers’ perceived problems in dealing with long-term consequences of stroke.
The problems identified in this study add to the body of knowledge about what caregivers who are new to the role of caring for persons with stroke are experiencing. An implication is for rehabilitation nurses to include these caregivers as someone who also needs nursing care. Caregivers are crucial to successful home care and too often they are ignored. Increasing the success of home caregiving has the potential to decrease the amount of healthcare dollars needed for persons with stroke to live at extended care facilities and to influence the quality of life for all involved. Nurses could use these findings to identify and focus on the self-care needs of caregivers and care recipients and plan and implement problem resolution strategies.
For example, educational approaches could be used to focus more on caregivers’ deficits or problems both before and after the care recipients return home. While the care recipient is hospitalized, the nurse and the rehabilitation team could give information to caregivers related to usual or specific problems either one-on-one or in a support or education group setting. The Internet could also be suggested as a good source of helpful information on a variety of topics. However, some Web sites contain information that may be dubious and false and caregivers need to be encouraged to ask questions of healthcare providers. Caregivers could be encouraged to call their rehabilitation nurse or team member, as well as their healthcare provider, with questions or problems. Staggering the times for presentation of information avoids overwhelming caregivers and promotes learning and successful caregiving outcomes.
About the Authors
Linda L. Pierce, PhD RN CNS CRRN FAHA, is professor at the College of Nursing, Medical University of Ohio at Toledo. Direct correspondence to her at 3015 Arlington Ave., Toledo, OH, 43614; firstname.lastname@example.org.
Victoria Steiner, PhD, is assistant professor at the College of Medicine, Medical University of Ohio at Toledo.
Barbara Hicks, MSN RNC, is associate professor emerita at the College of Nursing, Medical University of Ohio at Toledo.
Allison Lea Holzaepfel, MSN CNP RN, is family nurse practitioner at the Peninsula Medical Center, Marblehead, OH.
The authors wish to thank these caregivers and research team members for their participation: Candace Tavormina, MSN RN, and Kathleen Mitchell, MSN RN CRRN, recruiters; Marjorie Culbertson, MSN RN, interviewer; and Theresa Cervantez Thompson, PhD RN CRRN-A, qualitative consultant. The data abstracted and analyzed in this study were from the project, The Caring~Web©: A Pilot Study of In-home, On-line Support for Rural Caregivers of Persons with Stroke, funded by the Association of Rehabilitation Nurses/Rehabilitation Nursing Foundation.
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