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Stroke Caregivers Share ABCs of Caring (CE)
New stroke caregivers (N = 36) participated in a Web-based intervention that provided support and education and included exchanging e-mail messages in a discussion group. A male spousal caregiver posted a poem in his final message at the end of 1 year of participation in this discussion group. He used each letter of the alphabet to choose a word that represented a theme for what he had discovered while caring for his wife. A secondary analysis project examined narrative data from all caregivers’ e-mails to see whether support existed for the word themes in the ABCs poem. 2,148 e-mails were read and examined using content analysis to get a sense of the meaning of the content, and then key words were identified that matched each of the poem’s word themes. Other caregivers’ e-mail examples verified all 26 word themes of the ABCs poem. Nurses can use these themes when providing education and support interventions to stroke caregivers new to their new role.
In the United States, someone has a stroke on average every 40 seconds (American Heart Association [AHA], 2008). Annually, an estimated 780,000 people experience their first stroke or a recurrent stroke. The average survival time following a first stroke is 2–7 years (American Stroke Association [ASA], 2008a). With almost 6 million people living with stroke after effects (AHA, 2007), stroke is the leading cause of long-term disability (AHA, 2008). The direct and indirect cost of stroke in 2008 was estimated at $65.5 billion (AHA, 2008).
Stroke and Caregivers
Stroke survivors may have cognitive, emotional, social, behavioral, and functional impairments (ASA, 2008b). However, the impact of stroke is not limited to stroke survivors; it also affects the entire family (Draper & Brocklehurst, 2007). According to Johnson and Wiener (2006), many, but not all, stroke survivors in need of help receive unpaid or informal care from family caregivers. Informal caregiving in the home setting by family members is an integral part of our society. Expectations of informal caregivers are numerous, ranging from financial to emotional to physical support of stroke survivors.
Financial implications for those who survive stroke include estimated direct costs of more than $43 billion in 2008 related to healthcare expenditures, including visits to healthcare professionals and emergency departments and from homecare workers; inpatient hospitalizations and outpatient rehabilitation treatments; and nursing home stays, as well as medications and durable medical equipment (AHA, 2008). The estimated indirect costs for 2008 (almost $22 billion) were related to survivors’ loss of productivity, including loss of current or future earnings. As an example, the average lifetime cost of ischemic stroke for the survivor is estimated at more than $140,000 (AHA, 2008). In addition, inadequate finances and financial management may contribute to caregivers’ economic distress (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002).
Emotional or psychological expenditures related to stroke are also high for stroke survivors and their caregivers (AHA, 2008). For example, Cameron, Cheung, Streiner, Coyte, and Stewart (2006) noted that stroke survivors’ behavioral and psychological symptoms contribute to the informal caregivers’ experience of distress related to depression. Some researchers suggest that psychological well-being of informal caregivers is diminished when they experience difficulty meeting the care recipients’ emotional care needs (Bakas et al., 2002; Egbert, Dellmann-Jenkins, Smith, Coeling, & Johnson, 2008; Hartke & King, 2002). Nonetheless, these informal caregivers often feel obligated to care for survivors and provide them with emotional support (Larson, Franzén-Dahlin, Billing, Murray, & Wredling, 2005).
Informal caregivers are also expected to provide competent physical care for their loved ones (Elliot & Shewchuk, 2003). Persons with stroke increasingly depend upon their family caregivers’ resources for this continuing care, particularly when they are experiencing advanced deterioration of health and accompanying challenges of aging. Caregivers must learn to help with activities of daily living (ADLs), such as bathing, dressing, grooming, feeding, and toileting. Instrumental ADLs that include cleaning the house, cooking, and paying bills are also taken on by these caregivers. Because of the abrupt onset of stroke (Draper & Brocklehurst, 2007), informal caregivers often begin their roles with little or no training or support.
Caregivers and Internet Education and Support
Informal caregivers (who represent nearly 62% or 73 million people in the United States) search the Internet for healthcare information and to find support (Fox & Rainie, 2002) as they assume the caregiving role. During the past decade, healthcare professionals have used the Internet to provide information and researchers have used Internet-based support groups to gain an understanding of the needs of caregivers of chronically ill persons. The work of White and Dorman (2000) and Marziali, Damianakis, and Donahue (2006) serve as examples. White and Dorman analyzed postings (N = 532 messages) from participants in an Alzheimer’s mail group for the first 5 days of each month for 4 months in 1998. The number of participants in each month varied from 49 to 70. The themes that emerged were information giving and information receiving, encouragement and support, personal experience, personal opinion, prayer, thanks, humor, and miscellaneous. Using an Internet-based site for family caregivers of neurodegenerative diseases (N = 34), Marziali and colleagues reported positive participant responses to obtaining disease-specific information as well as giving and receiving support from group members. Other results reported included caregivers bonding with group members and improved coping with the stresses of caregiving (Marziali et al.).
More specific to the experience of stroke caregivers is Caring~Web© (http://caringweb.utoledo.edu), which was developed more than 7 years ago by Steiner and Pierce (2002) with the assistance of Web designers, to provide quick and easy access to Web-based education and support in home settings. The Caring~Web intervention was constructed with four interrelated components for caregivers: (1) Web site links to information about stroke and caring; (2) customized educational information and tips specific to caregivers’ needs; (3) an e-mail forum to ask a nurse specialist and a rehabilitation team questions in private; and (4) a nonstructured e-mail discussion among all participants facilitated by the nurse (Steiner & Pierce). This intervention was tested in several feasibility projects and found to be easy to use and a valuable resource by the caregivers (Keaton et al., 2004; Pierce & Steiner, 2004; Pierce et al., 2004a, 2004b; Pierce, Steiner, & Govoni, 2002; Pierce, Steiner, Hicks, & Holzaepfel, 2006; Thompson et al., 2004).
In a National Institutes of Health-funded study, Caring~Web was used to examine new caregivers’ experience of caring during the first year following a survivor’s stroke (Pierce, Steiner, Govoni, Thompson, & Friedemann, 2007; Pierce, Steiner, Khuder, Govoni, & Horn, 2009). Participants were informal caregivers or the primary person (>age 21) responsible for providing day-to-day care for a person with a first-time stroke who had completed treatment and was discharged to home in northern Ohio or southern Michigan. All participants were novice Internet users. In addition, caregivers were required to read, write, and understand English and have Internet access. The study received approval from university and hospital institutional review boards, and 103 caregivers signed the informed consent and were enrolled in the study between May 2002 and December 2004. Participants were randomly assigned to the non-Web-user group (n = 52) or the Web-user group (n = 51). Of these, a total of 37 non-Web users and 36 Web users completed the 1-year study (Pierce et al., 2007).
Reviewing the e-mail discussion component of Caring~Web called Caretalk, the authors found that a male caregiver had posted his final message containing a poem that used each letter of the alphabet to choose a word to represent what he had learned while caring for his wife during the first year following her stroke (Figure 1). Each word served as a word theme for what he had discovered. He may have presented this poem to the discussion group members as a demonstration of self-closure. The research team, however, wondered whether the ABCs represented only one caregiver’s experience in caring or did other caregivers in the discussion group feel the same? The purpose of this qualitative project was to examine narrative data gathered from the other stroke caregivers’ e-mail messages to the Caretalk forum to determine whether there was support for the word themes in the ABCs poem.
Data Collection and Analysis
The first two authors have education in qualitative research methods at the doctoral level and guided data collection and analysis. 2,148 e-mail messages posted to Caretalk by all 36 Web-user participants were collected, including the male caregiver’s message containing the poem. Because the caregiver posted the poem at the end of his participation in the study, no further communication with him ensued. It is impossible to know whether he incorporated perspectives that he gained during his year-long discussion with other participants into the poem or not. Thus, we made the decision to include his e-mail discussion messages in this analysis.
Content analysis was used to examine whether support existed for the ABCs that were described in the male caregiver’s poem. Holsti (1969) offered a broad definition of content analysis: any technique for making inferences by objectively and systematically identifying specified characteristics of messages. First, all authors read the e-mail messages or data to get a sense of the meaning of the content. Next, caregivers’ e-mail examples were identified that matched the theme represented by each of the 26 letters of the alphabet in the poem. Finally, key words for each â€¨alphabet letter were found using the “Find” function in Microsoft Word.
The 36 Web users were 31–80 years of age (mean age = 54 years). Most caregivers were female (69.4%), Caucasian (86.1%), and the wife of a stroke survivor (41.7%). The majority of participants had a college education or higher (58.4%) with an average of 14 years of schooling. Fifty-six percent of these caregivers were employed. A complete demographic profile for these Web users is presented in Table 1.â€©
Support was found for the alphabet letter (word) themes identified in the poem scattered throughout all caregivers’ e-mail messages in Caretalk. Not every caregiver discussed each theme; however, data are saturated because themes emerged many times in caregivers’ messages. Exemplars that support the letters ABC, MNO, and XYZ in the poem are reported in-depth. Other brief examples to substantiate the themes for the remaining alphabet letters are presented in Figure 2.
Letter A. I have learned to ANTICIPATE, anticipate, and anticipate.
The caregivers were placed in an unfamiliar territory with new roles and responsibilities. This new role proved challenging for most of the caregivers. A wife wrote, “everything and every move we make has to take into consideration the needs of the person we are taking care of. I find that anticipating his wants or needs and doing it ahead of time makes things easier.”
Caregivers not only had to anticipate the needs of their loved ones, but also the needs of their households. Many caregivers now took on the new role of cleaning, shopping, and cooking. One husband said “the part that is not satisfying (still) is the need to know everything she used to do and be able to anticipate what we need—like who cares what fabric softener we use, does it really matter?”
Letter B. I have learned to BEGIN in small steps.
Caregivers discovered that the healing process takes time and cannot be rushed. They learned to take joy in the smaller accomplishments made by their loved ones. One husband spoke of the small achievements made by his wife: “It is having her sort the mail, so I can pay bills. Or having her be able to take a message from a phone call. These are all little blessings.”
Another husband explained how he found a way to help his wife take on new responsibilities each day. He said, “I have given her the responsibility of taking her own blood sugar and giving herself her own insulin shot. So far she has forgotten the procedure once (I woke her from her sleep so she could administer it). I can see an ever-so-slight increase in her ability to fend for herself each day, so I try to give her more duties.”
Letter C. I have learned to COORDINATE many people’s schedules.
Caregivers learned a great deal of balancing is necessary when caring for loved ones. They learned to ask for help to manage their daily tasks (e.g., rides to shopping or meetings, sitters to stay with their family member). A wife wrote, “I still have to do the scheduling of everything and remind him of such and such etc.” They also spoke about different ways to organize physician appointments and therapy sessions to ensure that their loved one did not miss anything. Another wife explained, “I have a large note pad and I put the whole month on it with date and time for who and for what. It seems to work better if I can see everything right there. Then work any other appointments around that.”
Letter M. I have learned about MONEY.
Many caregivers spoke about financial frustrations. One son caring for his mother stated, “I haven’t paid bills in a month…it’s hard to write when you can’t keep your eyes open.” A husband noted “It means hard work, extra bills we normally did not have, a leave from teaching classes [his job] that was unanticipated or [un]wanted, and many new challenges, frustrations, laughable moments, and lots of silent and not-so-silent tears. It means a new bathroom, a new ramp in the garage, three cars for two drivers, learning that you really do save a lot of money with coupons, and clothes do not miraculously get washed, dried, folded, and put away.”
Letter N. I have learned that NEVER is an evil word.
Caregivers revealed how they learned to never give up and the importance of perseverance. One husband wrote, “I never brought up the things that didn’t go well. It was always great to look back a week or two and say, ‘Well, you couldn’t do that a week ago.’ The best thing that can help your wife is a great attitude; even when it may not go well, find the success and go on from there.” Another husband said, “I never take the time to look back. I feel that God has granted me at least one more day to do the things He wants me to do, so every day is a blessing.”
Caregivers also wrote about how they refused to give up even when healthcare professionals insisted that loved ones would never walk again. A wife shared, “doctors said [my husband] would never walk, so he has proved them wrong!” A son caring for his mother noted, “Docs said she’d never get out of bed again and that I best start looking at nursing homes. I said no, she would walk again. She spent 3 weeks in rehab and they thought the same when we first arrived. But by the third week, she was taking her first steps…now today she’s walking with/without walker.”
Letter O. I have learned to be OPTIMISTIC about the little things in life.
Through all of the trials and tribulations, caregivers remained optimistic. One daughter caring for her parents wrote, “on a positive note, I have learned that no matter what happens, how bad it seems today, life goes on and it will be better tomorrow.” A wife stated how her optimism helped. She said, “I thought I would go with: what we got is a lot more [function] than what we thought we would get. And if nothing else comes back we could live a very good life, if more comes back it’s icing on the cake.” She also later stated, “and I almost annoy him with my optimism, but I know it’s helping him cope (he’s never been very good at coping). We are going to make it through all of this and will live a very good life.”
Letter X. I have learned to XPECT â€¨anything.
A husband caring for his wife shared this story about a run in between his wife and their car. He wrote, “She 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 unable to reach the peddles real good because she couldn’t figure out how to move the seat forward. She backed out of the garage, missed the house, missed the power pole right next to the driveway, shot like a rocket across the street over the curb on the other side backing in an arc 180 degrees. In this process she blew a tire, but the force of the back bumper coming up wrinkled the trunk 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. Since she was all right and AAA was 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.”â
Letter Y. I have learned to appreciate the memories of YOUTH.
Caregivers shared examples about the things that they were no longer able to do because caring for a loved one is a 24-hour job. They spoke of memories from their youth and the things they used to do together before the stroke. A wife caring for her husband explained, “I miss just jumping in the car and running to the store or wherever. I guess I miss the independence…but he does, too. He loved to go to garage sales. I guess we both miss being able to just get up and go.” Another wife related that she used to enjoy riding motorcycles with her husband in the evenings before his stroke. They also enjoyed “going [places], taking walks in the woods around our house,” and that her husband also once “loved to dance.”
Letter Z. I have learned a ZILLION things.
Caregivers found that the caring experience actually taught them more about themselves and taught them to appreciate life and their loved ones. A husband shared, “[The stroke] made me realize how much I depended on and took my wife for granted running the house. Now I can talk a good talk in the grocery, bragging that my whites are whiter and my blues are bluer. I have yet to figure out why three of my socks and seven of hers end up in the folded piles. Nor do I know which machine is turning the underwear inside out. We don’t rely on frozen ‘red boxes’ entirely any more. I even enjoy cooking with wine and will try putting some food in it soon. I think of the caregiving daily, and figure it is my turn for 6–12 months, a small price to pay!”
Another husband commented about what he had learned, “In time all things change. I don’t know who said it first, but it could have been a stroke caregiver. I have accepted the idea that things will never be the same for my wife and me. So I am going to accept the fact that things are going to be different from now on and get along with the changes and enjoy what’s left of life. I feel that if all caregivers feel that way, there will be less frustration(s) in our lives, and accept the fact that the darn golf ball will not travel as far as it used to.”
Discussion and Implications
The purpose of this study was to find support for the themes identified in the male caregiver’s ABCs poem. The themes reflect financial, emotional, and physical support implications for informal caregivers in caring for stroke survivors (Bakas et al., 2002; Cameron et al., 2006; Draper & Brocklehurst, 2007; Egbert et al., 2008; Elliot & Shewchuk, 2003; Hartke & King, 2002). The conclusions from this study may be biased because the sample of caregivers was Internet users and participants in our Web-based discussion Caretalk. Aspects of these themes, however, have implications for clinical nursing practice that may be transferred to other settings and populations of caregivers.
Nurses need to assess the ability of family members to care for stroke survivors. However, nurses can be proactive and use these findings to tailor education and supportive interventions toward what caregivers say they learned about what is important during that first year of caring. Nurses can suggest tools for caregivers to use based on the topics identified; it is important to share and reinforce hints for successful caring. For example, the Letter C focused on coordinating people’s schedules. A portable monthly calendar to keep track of physician and therapy appointments as well as family members’ and friends’ availability for assistance (e.g., driving to appointments, listening to providers’ explanations) can be an important aid. In addition, a notebook for writing information that is learned at these appointments can be a helpful tool. Healthcare professionals could also design a written educational handout to help caregivers prepare for appointments that may add meaning to the purpose of the provider visits. Helpful hints to include for the caregiver in this handout include: (1) check ahead and confirm appointment date, time, and place; (2) make sure appointment tests and laboratory results have been received; (3) if referred to a specialist, confirm that the survivor’s chart has been received and make sure the appointment referral process and paper work have been completed for insurance reimbursement purposes; and 4) most important, bring and use the portable calendar and notebook to appointments and ask family and friends for assistance, if needed.
The supportive Web-based discussion used in this study gave caregivers a meeting place for connecting with their peers and the nurse facilitator, They were able to ask questions and problem solve as well as offer suggestions and advice to one another, while they learned the caregiver role. There are multiple Web-based resources for caregivers to choose. For instance, The Internet Stroke Center (www.strokecenter.org) sponsored by Washington University in St. Louis, MO, is an independent resource for caregivers that lists numerous links for free stroke support groups and discussion boards, including the American Stroke Association (www.strokeassociation.org) and the National Stroke Association (www.stroke.org). These Web-based resources offer easy access and are available in the home setting. However, some caregivers may not prefer Web-based support. Both stroke associations’ Web sites also offer a search tool to locate local face-to-face support groups by simply entering a ZIP code and choosing a mileage radius. Many of these support groups, no matter which venue is chosen, have professional counselors who participate in the discussions.
Educational materials—Web-based or face-to-face peer interactions—and professional counseling may be advantageous for stroke caregivers during that first year of caring. Teaching caregivers how to care and helping them find balance or manage caring activities and tasks are important. Finding balance or congruence in life is critical to maintaining freedom from distress, which will lead to long-term well-being or health.
Originally the messages posted to the Caretalk discussion group were considered to be data. These messages were not part of our larger study’s research questions answered by surveys and interviews, and there was no intention of analyzing this discussion content. However, as we read the caregivers’ discussion group messages, it became clear that these data needed to be secondarily analyzed and presented. The discussion group’s comments went beyond the survey and interview questions, allowing us to further explicate the experience of caring for stroke caregivers new to the role. Although this poem expressed one male caregiver’s unique, rich experience in caring for his wife, many of the other caregivers felt similarly. Healthcare professionals can use these themes when providing educational information and supportive interventions to help caregivers learn this new role of caring for stroke survivors. Moreover, these ABCs provide an insightful look at caring that exemplifies the human side of research.
The authors thank the male caregiver for his poem and also participants of this study who shared their thoughts and feelings about becoming a caregiver. Support for the Caring~Web©: Web-based Support for Stroke Caregivers study was provided by the National Institutes of Health/National Institute of Nursing Research # RO1 NR07650. Caring~Web can be accessed at: http://caringweb.utoledo.edu/.
About the Authors
Linda L. Pierce, PhD RN CNS CRRN FAHA, is a professor at the University of Toledo College of Nursing in Toledo, OH. Address correspondence to her at firstname.lastname@example.org.
Victoria Steiner, PhD, is an assistant professor at the University of Toledo College of Medicine in Toledo, OH.
Juli Smelser, MSN RN NP-C, is a family nurse practitioner at Fremont Memorial Hospital in Fremont, OH.
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