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Perceived Experience of Caring for a Wife with Stroke
This article presents a 55-year-old husband’s perceived experience of caring for his wife with stroke, as learned from his 1 year of participation in a Web-based support intervention study. In a secondary analysis of data, his narrative entries (n = 213) were coded and drawn to Friedemann’s framework of systemic organization. The themes that emerged from these data were that of the caregiver providing support, offering solutions, and taking control. Friedemann’s system maintenance process dimension was the area that captured most of his experience, which indicated that this caregiver spent a significant amount of his energy in creating control and stability within his environment to maintain congruence or balance in his life. These findings can be used to identify and design interventions, which for male spousal caregivers, affect the quality of their lives.
Approximately every 45 seconds, someone in the United States has a stroke. Of the 700,000 people that experience a stroke each year, nearly 76% survive (American Heart Association, 2005). Eighty percent of stroke survivors return home after hospitalization and rehabilitation (Thibodaux Regional Medical Center, 2005). More than 1 million American adults live with long-term impairments attributed to stroke, and family members provide most of the care for those persons in home settings (American Heart Association; Anderson, Linto, & Stewart-Wynne, 1995; Scholte op Reimer, de Hann, Rijnder, Limburg, & van den Bos, 1998).
Men make up 44% of this caregiving population. Most male spousal caregivers do not receive any assistance from family members (National Family Caregivers Association, 2000–2004) as they take on responsibility for not only managing household finances and housework, including meal preparation, but also for providing hands-on personal care for their wives, including management of incontinence (Cahill, 2000; Department of Social and Health Services, 2005). Pierce and Steiner (2004) found that men involved in caring for women were dealing with role changes, in addition to the women’s depression and irritability. Male caregivers experience more emotional distress, but they benefit from information, social interaction, and support groups with regard to managing stress. (Anderson, et al., 1995; Lauderdale & Gallagher-Thompson, 2002). According to Mant, Carter, Wade, and Winner (2000), an increase in social activities can improve the quality of life for caregivers. Caring~Web, a Web-based support and education site for caregivers of persons with stroke, is an example of available assistance, information, and activities (Steiner & Pierce, 2002). This case report describes a male caregiver’s perceived experience in the first year of caring for a wife with stroke, as learned from the discussion group on Caring~Web. Through his archived e-mail messages to group members, other caregivers, and a nurse specialist, his experience of caring became known.
With university institutional review board approval, Thomas (all names were changed to protect anonymity) was one of 103 adult caregivers that were recruits for a research project funded by the National Institute of Nursing Research (NINR). One-half of the participants were given access to the Web-based support intervention called Caring~Web. One of the components of this Web site was a nurse facilitated discussion group for the caregivers called Caretalk. Thomas was an active participant in Caretalk from October 2002 through September 2003. His year-long involvement in the discussion group helped to establish credibility of the data in that prolonged engagement with the other caregivers and the nurse-built trust. In addition, if e-mail messages were not understood, the other caregivers or the nurse could ask for clarification.
Thomas was Caucasian, 55 years of age, and a retired operations officer at a local bank. Thomas rated his health as good. On a typical day, he spent 2 or more hours performing tasks related to caring for his wife, Ethel. They lived in an urban setting in the Midwestern United States and did not have outside physical assistance from children and friends, although he did receive emotional support from family members and friends.
Ethel was Caucasian and 57 years of age with left-side brain damage and right-side impairment from stroke. Her score of 79 on the Functional Independence Measure (Center for Outcome Measurement in Brain Injury, 2002; Granger & Hamilton, 1993) indicated that she was functioning at a moderate level. However, her communication and physical functions were affected by her stroke, as were her social activities.
This case report is a secondary analysis of data previously collected for a larger NINR study. This method allowed the researchers to analyze the data in a differing way and to examine questions not posed in the original study (Norwood, 2000). In order to prevent bias associated with preconceived notions about a caregiver’s experience with caring, bracketing was implemented in this study. Bracketing involved the investigators identifying and controlling their self-assumptions or ideas about the experience before beginning the study (Polit & Beck, 2003).
The narrative electronic data (213 archived e-mail entries) were analyzed using Norwood’s (2000) rigorous process of content analysis that consists of three phases: deductive, inductive, and integrative. The deductive phase entailed converting the data from narrative form to more manageable units (Norwood). The four investigators first read the e-mail messages (uncoded) from the male participant that were posted to the Caretalk discussion. This enabled them to acquire a sense for the participant’s description of caring. Next, a category scheme was used and data were coded and sorted. The category scheme was framed within Friedemann’s (1995) framework of systemic organization and developed by the researchers from the larger NINR study (Pierce et al., 2004).
Then, the inductive and integration phases of analysis began (Norwood, 2000). In the inductive phase, the four investigators individually labeled themes that emerged from these coded data. These themes were then discussed, by the investigators as a group, until consensus was reached, which helped to establish credibility of the findings. In the integration phase, relationships between themes and variations within themes were identified and woven together into an integrated whole such as a theory. For the current study, themes were drawn, as appropriate, to Friedemann’s (1995, 2005) process dimensions of system maintenance, system change, coherence, and individuation, as well as congruence described in Figure 1.
The three themes, presented in Table 1, that emerged from these data were providing support, offering solutions, and taking control. The themes were drawn to Friedemann’s (1995, 2005) process dimensions of system maintenance and coherence, as Thomas strove for achieving congruence or a balance in his life during the first year of providing care to his wife.
Providing support. Thomas received some messages of support from other members of the Caretalk discussion group; however, more often, he wrote numerous entries providing emotional support to the other caregivers. He reached out to these caregivers and tried to encourage and comfort them. For instance, Thomas said, “I give big hugs or hand shakes to all caregivers . . . ” and “Welcome to our Caretalk world. Even though the stroke is serious and caregiving is a lot of work. Sometimes we try to lighten up.”
Thomas expressed support for others through prayer. He shared, “Welcome to our tale of whoops and then praise to the Lord that progress has been made.” Thomas offered prayer to other caregivers during their times of increased stress. For example, he said, “My prayers are with you all in the hope that recovery is just around the corner.” Thomas also shared how important prayers were to him when he said, “Thoughts and prayers from all [group members] helped support Ethel and myself in this part of our life.” In addition, Thomas wrote about being thankful for successes and offered words of encouragement to others that encompassed not only spirituality, but also growth. He said, “Ethel and I were told that some recovery can take place several years down the road. I just keep praying and am very thankful that she has come back to the point she is at now. Chin up and charge forward.”
Offering solutions. Although sometimes Thomas asked for information from others, he mostly tried to be helpful and gave advice or offered solutions based on his experience of caring for his wife. He said, “Jason, I know when my wife had long therapy sessions she was ready for a nap…. She still gets tired, if [she] takes on too many activities. I do not know any special secrets. When she had therapy, that was the only activity for her on those days. Is your wife trying to do something before going to therapy? Maybe on those days she should be more restful.”
Thomas also gave advice to others by sharing his experience of what worked for him and what to watch out for. He said, “Ethel would let them skip things (in physical therapy), so I had to watch and see that they followed through.” Based on Thomas’ past concerns, he guided other caregivers when they were not sure of what to do. For example: another caregiver asked about his wife stopping her medication for depression. Thomas responded, “Michael, anti- depressants will affect people differently. My wife was on Celexa (citalopram hydrobromide) for a while. She had her stroke in late summer and stopped using it by the end of the year. My best advice is contact the doctor and tell him what is going on. Time and patience is also helpful.”
Thomas also suggested other options that caregivers may not have thought about. He shared, “Maybe the holiday could be delayed until YOU can take time to get things in order, but do not rush it. It is no good if you are too exhausted to enjoy the holiday.”
Giving advice was Thomas’ way of offering solutions for assistance with caring. He also advised caregivers to keep a diary of how the exercises learned in therapy could be applied to daily activities. In dealing with emotional difficulties, Thomas offered, “Make a flash card that says ‘You can only yell at the hired help, I care about you’, and then when he starts to yell, hold it up.” He also encouraged caregivers to release their frustrations: “Is there a neighbor that might stop by to keep him company while you go screaming through the neighborhood. I can only imagine how tough it must be.”
Thomas displayed a positive, ‘been there, done that’ attitude to other caregivers in giving advice and offering solutions. He noted, “Oh, Julie surely something good happens every day, no matter how small it is. But it is the small accomplishments that should be praised every day. If something did not work out today, so what. The failures do not have to come up in conversations, just push the day’s accomplishments. I kept telling Ethel that we are accomplishing this [stroke recovery] one day at a time. We make it through today and this is wonderful. Then we wait for tomorrow’s accomplishments. Head up and push forward and look for that one good thing that is what it’s all about. Taking control.”
Thomas spoke frequently about taking control of what is going on with Ethel, since her stroke. He took Ethel to her doctor’s appointments and felt responsible for keeping track of all that was going on with her care. He said, “I feel that part of my caregiving [role] is making it to all those doctor visits so that once she leaves the doctor’s office I know what was said. I sometimes have to refresh the doctor on her condition or what test she had done someplace else.” In an early response on Caretalk, Thomas said, “The show I put on that every thing is under control is just that [a show].” He verbalized that he felt it was necessary to protect Ethel. He said, “She knows that the rest of the jobs at church don’t belong to her and the word is out if anybody asks her to take something on, they could be smashed like a bug by her mean caregiver.” Thomas communicated that it was his job to watch over Ethel and decide when she could take on more activities and/or responsibilities. He acknowledged, “I know Ethel would like to do more, but she knows that I am watching and ready to flip the limit switch, if I believe she would be taking on too much. I think it is wonderful that she wants to do more, but I am not looking to start over [with having another stroke].”
He reflected why he needed control over what happens in Ethel’s life. He said, “Your life changes. My life value changes started at the time my father had a massive stroke and died 7 years ago. I started thinking about what was more important and when my mom showed signs of needing more assistance 3 years ago, I decided it was time to quit the rat race and take on the career of caring for her. When Ethel had her stroke, the burden just doubled.”
During the first year of providing care, Thomas spoke of the responsibility of providing care to Ethel. He wrote, “How does one keep from thinking of their patient responsibilities even when you are not right there? I realize you can get someone in to sit, but I keep going over schedules and thinking if there is anything else I should be doing.” He wrote about being there to support her: “I can do my best for Ethel, letting her reach out to do things that she is comfortable with and being there to catch her if something goes wrong.” Thomas feared if he did not limit Ethel’s activities certain disaster would occur. All her activities might “raise her blood pressure and then BANG strokesville.”
The following is an example that is representative of his frustrations. He wrote, “First of all Ethel didn’t hurt herself, other than her pride. But for some unknown reason, she just had to get this piece of music. So she got in her car and was unable to reach the pedals very well, because she couldn’t figure out how to move the seat forward. Then, she backed out of the garage, missed the house, missed the power pole right next to the driveway, and shot like a rocket across the street over the curb on the other side [of the street], backing in an arc 180 degrees. In this process, she blew a tire. The force of the back bumper coming up wrinkled the truck lid. Lucky no one was on the sidewalk or coming down the street. I now have her set of keys. This is the first bad problem here at home we have had. Because she was all right and people were coming to change the tire, I went to play bridge…it was that or try to construct bars over the hall doorway, so she could never do this again.”
The themes of providing support, offering solutions, and taking control were mostly centered within Friedemann’s (1995, 2005) process dimension of system maintenance. System maintenance (see Table 1) is aimed at stability and control, and includes actions that work to maintain the system and protect it from threatening changes (Friedemann, 1995, 2005). The actions taken by this caregiver were meant to help him meet physical, emotional, and social needs, while maintaining his life and reducing the threats of change. In other words, system maintenance represents a guide in life that allowed him to have a sense of security and autonomy and/or control. Through supporting others and offering solutions, this caregiver was helping to maintain other caregivers’ systems. These caregivers may have been better able to deal with or adapt to their current situation, thus keeping their underlying systems stable.
For the theme of providing support, the process dimension of coherence was also identified. Coherence (see Table 1) represents family identity and emotional bonding, behaviors that are necessary to maintain unity. Coherent persons feel secure and are at peace. Coherence targets stability and spirituality (Friedemann, 1995, 2005). This male spousal caregiver was demonstrating coherence in that he interacted with others and used his faith in God to provide support.
No themes were identified with respect to Friedemann’s (1995, 2005) process dimensions of individuation or system change. This may be due to the fact that the discussion that occurred on Caretalk represented only a segment of his life. Individuation and/or system change may have occurred, but it was not shared through his discussion with other caregivers or the nurse specialist. Furthermore, for true system change to happen, it may take years before the change is integrated into life patterns. One year of caring may not have allowed for this caregiver’s system change(s) to be known.
Congruence (see Table 1) represents a balance of forces related to the process dimensions and their targets of stability, growth, control, and spirituality and leads to optimal health for both the caregiver and his/her family (Friedemann, 1995, 2005). Although this caregiver was doing everything in his power to preserve his life and find a balance within it, he had not reached that point during this study or obtained congruence.
One implication from these findings is to have rehabilitation nurses include the caregivers of persons with stroke as someone who also needs nursing care. Too often caregivers are ignored, and they are crucial to successful home caring. For example, when rehabilitation nurses expand their nursing care to routinely include caregivers, it could raise the cost of health care, in that there would be time and resources needed to assess, diagnose, plan, and evaluate caregiver interventions, in addition to intervening or treating the person with stroke. However, increasing the success of home caregiving by male spousal caregivers, and also their families, would decrease the amount of healthcare dollars needed for persons with stroke to live at assisted living or extended care facilities.
The theme of providing support found this male caregiver spending much of his time giving help to other caregivers in the Web-based intervention. This theme indicated that men have a need or desire to help others. This finding encourages rehabilitation nurses to offer male spousal caregivers information regarding either Web-based or in-person support groups. Male caregivers can be given a role within the support group to go to the hospital to meet new caregivers to talk about what it is like to provide care, as well as given an outside activity and additional socialization opportunities. In fact, the second theme of offering solutions indicated that this male caregiver wanted to help others by sharing his expertise in caring for his wife. Another opportunity to use this information in practice settings is for nurses to collect specific advice from male spousal caregivers and put it together in an informational pamphlet for caregivers about common problems encountered and successful solutions. The final theme indicated that this male caregiver spent much of his time in trying to control factors that he truly had no control over. His goal was to manage his wife’s life and decrease her stress. This is a concern for rehabilitation nurses, as male spousal caregivers face a potential for burn out when trying to control situations. Caregivers may benefit from information about stroke and what causes stroke to allay their fears, in addition to talking about real or imagined fears. Individual or family intensive therapy may help these caregivers, as over time and in a safe setting, they can have an open dialog about their fears and work through the life changes that they endure after the stroke changed their lives. Men may also profit from outside diversions such as exercise or hobbies to decrease the amount of time and energy that they might spend in trying to hold their wives back from returning to functions that they previously maintained.
These findings underscore the benefits of a Web-based support group in providing education, assistance, and socialization to male caregivers that can be accessed 24/7 at their convenience. Web-based activities may give caregivers an outlet to vent concerns, offer support, and give advice. By providing strategies to meet their needs, men may gain knowledge, be more effective in the caring role, receive helpful support, and use the intervention to ease the difficult task of providing care to their wives with stroke.
Limitations of this study reflect that these findings represent this one male caregiver’s perceived experience of caring for his wife. The reader must decide whether these findings have applicability to their caregiver population. Thus, recommendations for future research include examining other male spousal caregivers to note differences that may be related to ethnic and cultural aspects of caring or geographical settings outside of the Midwestern United States.
This case report illustrated a male caregiver’s efforts toward maintaining stability and controlling his life and environment in caring for his wife with a stroke. The report also painted a picture of this man’s use of spirituality. This caregiver put the most amount of energy into maintaining his system and protecting his and his wife’s life from the threatening changes caused by her stroke, while he sought to find congruence or balance in life. These findings have the potential to be used by rehabilitation nurses in a variety of settings to identify and design interventions for male spousal caregivers that affect the quality of their lives.
The larger research project was supported by grant RO1NR007650, National Institute of Nursing Research, National Institute of Health. This secondary analysis study was supported by a grant from Sigma Theta Tau International, Zeta Theta at-Large Chapter. All caregivers, and especially this male spousal caregiver, are thanked for their participation.
About the Authors
Linda L. Pierce, PhD RN CNS CRRN FAHA, is a professor at the University of Toledo College of Nursing. Direct correspondence to her at the University of Toledo, College of Nursing, Mailstop 1026, 3000 Arlington Avenue, Toledo, OH 43614.
Victoria Steiner, PhD, is an assistant professor at the University of Toledo College of Medicine.
Barbara Hicks, MSN RN CNS, is an associate professor emerita at the University of Toledo College of Nursing.
Judy Dawson-Weiss, MSN RN, is a nurse practitioner at a private practice.
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