What Happened to Normal? Learning the Role of Caregiver
Teresa Cervantez Thompson, PhD, RN, CRRN-A,
Linda L. Pierce, PhD, RN, CNS, CRRN, FAHA,
Victoria Steiner, PhD,
Amy L. Govoni, MSN, RN, CS,
Barbara Hicks, MSN, RNC, and
Marie-Luise Friedemann, PhD
Cervantez Thompson, T, Pierce, L.L., Steiner, V., Govoni, A.L., Hicks, B., & Friedemann, M. (June, 2004). What Happened to Normal? Learning the Role of Caregiver. Online Journal of Nursing Informatics (OJNI). Vol. 8, No. 2. [Online]. Available at http://ojni.org/8_2/caregiver.htm
Stroke is a sudden event leaving the family to deal with confounding emotions and realities. This article describes one theme, changing roles and solving problems, derived from a Web-based support intervention pilot for new caregivers of persons with stroke (n=9). This theme relates to changes undertaken as the role of caregiver is assumed and problems are solved. The qualitative analysis is based on telephone interviews and caregiver computer entries (n=563). The framework of systemic organization by Friedemann (1995) guided data analysis and interpretation. The caregivers’ need to learn their role was clear, as they discussed the basics of managing activities of daily living and problem solving strategies. They were open with their thoughts and feelings about caregiving and the changes this experience brought to their lives. The findings reinforce the need for nurses to identify caregivers as a recipient of care and assist and support them in adjusting to this role.
Key words: Internet or Web-based, education, support, Stroke or CVA, caregivers
The role of adult caregiver is one that is rarely expected. This is especially true for families of individuals who have had a stroke. Every forty-five seconds someone in this country has a stroke with over 4.7 million having survived (American Heart Association, 2003). While varying in severity, residual functional, cognitive and/or communication deficits are the most common aftermath. Because of stroke deficits, the need for caregiving will likely come in some form and be a challenge for the family.
Brain attack or stroke is a sudden event leaving the individual and family in disarray dealing with many confounding emotions and realities. First is the real issue of survival with the fears and relief surrounding the early days of a stroke. Second is the uncertainty of function, what abilities have been lost and what will return. Third, is identifying what needs to be done to encourage function(s) to return and what function(s) will a caregiver need to compensate. Finally, what assistance is truly needed? This latter question is often colored by new caregiver’s feeling overwhelmed and insecure. These feelings include concerns there may be another stroke, or that the care recipient is still ill, and pressure related to learning new caregiving roles while retaining old roles within the family. Schumacher, Steward and Archbold (1998) confirmed that those “new to caregiving sometimes fear they will not be able to meet the demands of caregiving” (p.64). There is also the tendency to view (hope) the situation is temporary. Thus becoming a caregiver is not a linear process wherein changes are identified, learned and made. Instead there is an effort to maintain what was, hope for what was, and when this does not occur, slowly move toward needed adjustments. This article will present one theme derived from the data analysis of a pilot study, which provided Web-based support to new caregivers of persons with stroke. The theme relates to changes undertaken as caregivers assume the role of caregiver and problem solving efforts shared.Background
The preparation and follow up support of caregivers for individuals with a stroke has been reported as minimal (Anderson, Linto, & Stewart-Wynne, 1995). Yet the need for caregivers to take on and accomplish this role is key to the successful home discharge of individuals with a stroke. As noted by Steiner and Pierce (2002) “If caregivers well-being declines, their ability to provide effective caring for a person with stroke declines too” (p.102). The idea that support of the caregiver can result in a more successful experience has been recommended by other caregivers and described as beneficial (Pierce & Salter, 1988; Williams, Oberst, Bjorklund, & Hughes, 1996).
This current study is part of a series of pilot work conducted in the development of a Web-based support system for caregivers of individuals with stroke and as a foundation for a larger study. The researchers, having a strong background in stroke support at a face-to-face level, sought to develop a Web-based support system, which could be at the fingertips of the caregiver (Pierce, 2001a, 2001b, 2001c; Steiner & Pierce, 2002). Earlier pilots had involved expert review of topics to be presented along with lay evaluation of the Web site’s content and ease of use (Pierce, Steiner, & Govoni, 2002, Steiner & Pierce). The outcomes of the early efforts included the development and refinement of Caring~Web ©, its content and the role of the advanced practice nurse specialist (Govoni, Pierce, & Steiner, 2003). Table 1 describes the components of the Caring~Web intervention. Details about the cost and use of MSN Web TV™, the vehicle used for an Internet connection, are available in an earlier publication (Steiner & Pierce, 2002). Simply, Caring~Web © is an intervention of support and education for caregivers of individuals who have had a stroke. Caregivers enrolled in the study have online access to information, support from each other and professional support of a nurse specialist. This current study piloted the program with caregivers living in rural settings.
Table 1. Caring~Web© – a Website for caregivers of persons with stroke (Steiner & Pierce, 2002).
Access limited site for research participants. Site includes all the aspects of Caring~Web© described below.
Ask the Nurse
Email option to nurse specialist for questions regarding caregivers’ experiences or concerns in caring. Responses provided within 24 hours. The nurse specialist is supported by a back up rehabilitation team of physician, social worker, physical therapist, occupational therapist, speech therapist, pharmacist, and dietitian in answering questions.
An electronic mailing forum that includes all caregivers and the nurse specialist. This forum allows the exchange of messages across the group where caregivers can share their caring experiences. The nurse specialist as part of the group can facilitate the discussion, clarify misconceptions and respond to concerns. This nurse sends a weekly message to stimulate discussion or posts questions relative to the caregiving experience (Govoni et al., 2003)
Tip of the Month
Educational information prepared specifically for this study based on identified caregiver needs and current information in the field (Pierce, Rupp, Hicks, & Steiner, in-press).
Links to Web sites related to stroke, caring and caregiving. All links have been evaluated as to authorship, attribution/references, disclosure, currency, target audience, external advertising, credentials of authors or editors, privacy statement, and external certification.
Sites of interest and diversion to provide stress reduction access to current news and fun activities.
This study was conceptualized and analyzed using the framework for systemic organization a theoretical approach to working with families (Friedemann, 1995, 2003). This framework views the family within its environment working toward targets of stability, control, growth, and spirituality. Congruence in these areas involves interaction of the process constructs of system maintenance, system change, individuation, and coherence. Table 2 provides definitions of the constructs and their targets. The caregiver role theme falls within the two constructs of system maintenance and system change. System maintenance targets control and stability while system change targets control and growth. Friedemann (1995) noted that caregivers within a family setting might respond to the need to change both attitudes and beliefs in order to allow the introduction of new roles and patterns. Such shifts lead to growth and system change. Szabo and Strang (1999) found that control was a key factor in the caregiver’s management of the caring role. As the caregiver learning progresses and change is integrated into their lives, they may then move to the individuation phase of the framework. In all, the caregiver tries to adjust to the changes required while trying to maintain the system (Friedemann, 1995).
Table 2. Framework of systemic organization; Theoretical construct definitions and targets (Friedemann, 1995, 2003)
The theoretical constructs include actions or behaviors rooted in values and beliefs used to pursue systemic targets and move towards system congruence. In order to maintain balance for individuals and within the family system, caring behaviors for the care recipient relate to individual and family style and pertain to four process dimensions: system maintenance, system change, coherence and individuation.
Behaviors that are grounded in tradition, refer to the structure and process of the individual and family, and pertain to organizing and operating the person’s/family’s business. System maintenance comprises roles, rules, organizational patterns, rituals, decision-making, power structure, and division of labor.
Control and Stability
Refers to major alterations of system operations that result in shifts within the traditional individual and family value system. New information is incorporated and channeled; values and adjustment of beliefs are tested; behaviors patterns to concur with new values are adjusted; and new patterns are incorporated into system maintenance by changing and eliminating old ones.
Growth and Control
The emotional bonding and caring relationships among individuals and family members.
Spirituality and Stability
The promotion of individual learning and changing attitudes, taking in and incorporating information, and sharing opinions and beliefs. Through communication the individual and family encourages examination of the new values
Spirituality and Growth
This occurs through balancing and reconciling the four targets in many areas of daily living. While congruence is continually attempted, it is never fully realized because changes and conflict continuously threaten the individual and family system’s operation.
Review of the Literature
Caregiving has been the focus of research for over thirty years. Two review articles by Farren (2001) and Hunt (2003) looked at the concepts and focus of this research. Farren noted that intervention research has centered on caregiver health and vitality, support interventions, stress adaptation and to a lesser degree the positive aspects of care giving. Hunt’s caregiver research review identified the concepts of caregiver burden, caregiver stress, caregiver strain, caregiver esteem, caregiver satisfaction, meaning of care giving, caregiver experience, and caregiver appraisal. Hunt also identified negative versus positive concepts in the caregiving role that included burden, hassle, strain and stress versus caregiver esteem, meaning, satisfaction, uplifting and learning. Hunt concluded that there was a “need for research on supporting family caregivers in an effort to improve quality of care and quality of life for both patients and family caregivers” (p. 31). The process of moving into the caregiver role requires adjustments by both the caregiver and care recipient. Coeling, Biordi, and Theis’ (2003) research into the dyad relationship described the need to immerse into the caregiver and care receiver relationship, while retaining personal identities. The degree to which this is successfully accomplished is key to a positive experience. In a five-year longitudinal study, older married couples were observed to transition in and out of caregiving roles ( Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003). These authors noted the issue of “heavy caregiving” meaning activities of daily living (ADL) was associated with more reported poor health and depression by caregivers. Edwards and Ruettiger’s (2002) study of Parkinson’s disease and marital quality found the need for support groups for spouses to discuss frustrations and avoid burden. These authors reinforced the need for social support for spousal caregivers as they try to solve problems (Edwards & Ruettiger).
Articles related to caregiving of adults have centered on care of individuals with various conditions including Alzheimer’s disease and to a lesser extent spinal cord injury, Parkinson disease, stroke and hip injury (Edwards, & Ruettiger, 2002; Elliott, Shewchuk, & Richards, 1999; Williams, & Dahl, 2002; Williams et al, 1996). These authors identified the potential for stress and strain as part of the experience, the role changes that occur and the need for support during the caregiving process. Williams et al. noted that role changes might unbalance the family system.
Caregivers and Web-based Support : Books and articles have described the online characteristics that support the concepts of community or culture on the Internet (Liu, 1999; Notess, 1999, Porter 1997). Korenman and Wyatt, in analyzing the tenor of an online discussion list, described the feelings of a group as a basis of their descriptive research on a Women’s listserv (1996). Barnes described the online member experience of various groups as one where the interactions and behaviors are similar to those within the same physical space (2003).
The concept that there is community within cyberspace supports the idea of interventions online. Oermann, Lesley and Kuefler (2002) described the use of Internet as a teaching tool. Weinert (2000) used cyberspace for support of individuals with chronic illness. She found that computer intervention did enhance coping, health, and productivity of individuals with chronic illness (Weinert). Finn had similar findings in the exploration of online group support of individuals with disabilities (1999). Finfgeld (2000) realistically looked at the research to date in the mental health and therapeutic groups online and cautioned that further research is needed to identify how this form of intervention will impact on care recipients and how group facilitators should be trained.
Support has been reported in many forms but the impact of computer technology as a support to caregivers is only recently being reported (Bass, McClendon, Brennan, McCarthy, 1998; Brennan, Moore & Smyth, 1995; Pierce et al., 2002; Pierce, Steiner, Govoni, Hicks, Thompson & Friedemann, 2003). These authors have found that in home, Web-based support is a positive experience that has potential to enhance the caregiving experience and support the caregiver. They also noted the need for further study to understand the potential of this medium for intervention.
Description of the Study
This pilot study was approved by the university and hospital Institutional Review Boards prior to the recruitment of 9 the participants enrolled into Caring~Web Ó. Criteria for participation were that the caregiver was an adult, this was the care recipient’s first stroke, they lived at least 30 minutes from a level-one trauma center, but within a 50-mile radius of metropolitan Toledo, Ohio. This purposive convenience sample of caregivers could all read, write and understand English. Each caregiver was in the study for the first three months after his or her care recipient’s discharge from inpatient rehabilitation. With their consent, Caring~Web Ó was installed in their homes and instruction given for its content and use (Table 1.). Bimonthly telephone surveys were conducted using semistructured interviews to identify problems and solutions as well as successes the caregiver had experienced since the last interview. These data were entered into a Web-based interview screen at the time of the interview.
The content of all online communication through Ask the Nurse and Caretalk along with the content of the interview responses were the data source (n = 563 entries) for qualitative analysis. These data were entered into QSR N 5 for qualitative data management, tracking and coding as well as follow-up searches (Richards, 2000). Once entered, the qualitative consultant undertook review of content for full emersion into the data set. Coding was then done using a preliminary coding rubric established by the research team, based on Friedemann’s framework of systematic organization (1995, 2003). The theorist reviewed the rubric to ensure accuracy and congruence with theory concepts (Pierce et al., 2003). The coding rubric contained the five domains of system maintenance, system change, individuation, coherence and congruence (see Table 2). Within these domains individual subcodes identified actions, behaviors or tasks. After preliminary coding by the qualitative consultant the research team of investigators, nurse specialist, theorist and project manager reviewed the data and coding. This check provided an opportunity to confer on the use of the rubric as well as to expand the understanding of the data from a number of perspectives. This allowed for clarification and consensus building that resulted in further refinement of the coding rubric, adding descriptive meanings for codes (Emerson, Fret & Shaw, 1995.) This process not only the used constant comparative, but also provided external confirmation and credibility checks from the researchers, theorist, nurse specialist and project manager; the latter two having lived the experience (Struebert & Carpenter, 1999 p. 112). The qualitative consultant then reviewed and updated the coding to incorporate the refinements and insure the descriptor’s meaning had been effectively applied.
Trustworthiness of the data and interpretations were further enhanced in the following ways. The interviewers were trained in the use of the tool, and had readings and presentations by the investigators and the theorist. The nurse specialist is an experienced rehabilitation nurse with strong clinical skills with support groups and mental health. Online postings over a three-month period as well as biweekly interviews provided a vast amount of data from the caregivers and the interviewers, which added to the trustworthiness of the overall findings. Finally while the researcher is part and parcel of the qualitative research process, the added dimension of having additional reviewers for content clarification, refinement and concurrence enhanced the data interpretation. Patterns and themes emerging from the data analysis were identified by the researcher and shared with the team for confirmation as reflective of the caregiver experience. Results
Nine caregivers were recruited into this pilot study. Five (5) were men, four husbands, one friend and four (4) women, one wife, one daughter, and two daughter-in-laws all from northern Ohio and southern Michigan. Demographics of the participants included eight (8) Caucasian, one self identified as other; ages ranged from 51 to 72 years of age, five of the nine worked full-time with the remaining participants not working during the study period. Educational level of the participants ranged from 9 -18 years of school completed. All were new to the role of primary caregiver. They were all responsible for the day-to-day caregiving.
Care recipients included one man and eight (8) women with first time strokes. The care recipients age range was 54 to 87 years of age, two had the right side of the body affected by their strokes and seven had left side affected. Based on a well-established function independence measure (FIM), three of the care recipients were considered low functioning and six were considered high functioning (Granger & Hamilton, 1993).
Five themes emerged from the analysis of the data: 1) changing roles and solving problems identified as system change and system maintenance in Friedemann’s framework (1995, 2003), 2) seeing others’ success or failure as own (individuation), 3) pulling together and feeling connected (coherence), 4) being spiritual (spirituality) and 5) balancing successes/problems (congruence).Finding Related to Changing Roles and Solving Problems
Changing roles and solving problems, the focus of this article, emerged from patterns that included assistance with activities of daily living, problem solving, thoughts about change, caregiver role, wishing for what was and the impact of what is. These patterns reinforce the behaviors and values caregivers were describing as they worked to maintain, stabilize, or change within their family system.
Activities of daily living were an expected pattern of change given the recent stroke experience of the care recipient. Caregivers discussed responsibilities and successes encountered, as they posted in the Web-based discussion and through the interviews. Examples of discussion postings or interview findings included one wife saying, “Dressing [her] husband is hard. The pants are hard to put on.” This same wife described her “biggest challenge now is to get him where he can take himself to the bathroom.” These basic needs were now part of caregivers’ expectation.
The five male caregivers were taking on new household duties. One caregiver noted he was “learning how to sweep floors and dust and clean off tables. Because she doesn’t do this.” The interviewer noted, “before the stroke happened he didn’t work in the kitchen, and now he does. Its been challenging for him to take these responsibilities.” As one husband concluded, “I am learning to make meals and wash clothes etc. I can appreciate the saying now that a wife’s job is never done.” Over time caregivers described “working together on household activities, making the bed and setting the table, preparing meals” as part of their successes. Or even better, they described a task that they no longer needed to do when the care recipient had begun taking on the task. As one caregiver shared, “thrilled with finger movement, toileting, dressing, hanging up a piece of clothing. Improving slowly but improving nonetheless.”
Problem solving related to how the caregivers managed day-to-day needs or enhanced the care recipient’s rehabilitation process. One husband shared, “We have purchased some walkie-talkies, so I can go out in the yard and mow. She can just page me if needed…” Another caregiver wife said, “He has a cell phone that he could alert someone if something happened.”
When it came to helping the care recipient regain function their creativity came out, one woman caregiver shared how she had “purchased a rubber sand ball and throws the ball to her [care recipient] and she exercises her hand with it.” Another described:
I have devised an exercise mat by duct taping together 3 standard exercise mats and placing them on top of a waffle sponge bed mattress softener. Then I covered both with 2 shower curtains made to fit like one big pillowcase. Once taped together you can tighten the corners so mat is without wrinkles. Duct tape will hold really well as you adjust the fit…
Still another woman caregiver described the:
Biggest success has been walking my husband by myself where it took 2-3 people at the Rehab Center. I have a long kitchen counter/ 13-14’ – I put a strong Velcro brace on his left (affected) knee and a gait belt and we walk the length of the counter and then back –up and walk again. He steps out pretty good, much better than when he had a 5-6 lb iron brace on his leg at rehab center and the therapist would kick it from behind as he tried to walk.
The pride of these accomplishments was clear. The caregivers also shared how they changed medication times to decrease fatigue for their care recipient. There were also strategies to get things done. One caregiver shared he was “making deals with (the) patient to get job done, e.g. work in the kitchen” or to participate in exercise. These strategies were used as part of their new roles: caregiver and motivator.
Thoughts about change included the realities of continuous responsibility. As one caregiver wife shared, “our lives have been turned upside down and inside out.” One male caregiver noted, “Having to be together 24 hours a day is the biggest hurdle.” Another caregiver shared that his wife had “always been a take-charge person and now she has to ask for help and that in itself has been a challenge. I find myself doing things for her to make it easier on her, but I realize that she has to do these things herself. … I also have to take over household duties (such as paying bills and doing the daily chores) and also having to take care of Diane (pseudonym). I myself have had to change my daily routine to accommodate what Diane needs.”
Three of the four women caregivers were daughters or daughter-in-laws. An additional concern was expressed by one who shared, “Our biggest problem is having time to be alone with my husband and still give attention to my mother-in-law…”
As to the caregiver role , there was honesty in participant’s sharing, “It has been more work than you expected, but it has been enjoyable.” Or, “(One) gets tired doing all the chores she normally did [and] that is depressing.” Another male caregiver wrote, “I feel as if caring is both a good experience and a burden. It is a burden for me as I have so many things to do that I hadn’t done before. I used to do my jobs like cutting grass and painting and other duties but now I have much more since my wife’s stroke. I can’t seem to find the time to do some of the things I used to such as playing golf. I guess I’m being selfish and feeling sorry for myself.”
Caregivers talked about learning from the experience, one interviewer noted, “he’s learned not to argue with her as much when she says the wrong thing,” or “she feels she needs to be more alert to what he is doing” [for safety]. They also learned the hard way as one shared, “(I) felt guilty when he fell last week because [I] assumed that he could do it by himself.”
At times they felt alone and shared this in the discussions and interviews, “I don’t feel I can ask any more of others for help. … I feel guilty asking any of them unless it is really a necessary need, I can’t see myself just leaving and going someplace to enjoy myself. If we didn’t have a faith in God, this would be unbearable and a source of constant anxiety.” “I am tired today, wondering if I’ve taken on more than I will be able to cope with especially when it comes time to go back to work. …. I think about these obstacles and wonder how I can prepare. I get emotionally to the brink of screaming at my spouse or bawling... How do I find time for my own needs? Who takes care of me?”
One of the positive experiences in caregiving was described as follows, “we have become a closer knit family, each helping one another together, getting each other’s ideas and thoughts as we care for our first-time stricken stroke victim mother. It is all very new to us and is as much a learning tool as a caring tool in regards to our mother.”
The caregivers shared ideas or asked questions about how to handle their role of caregiver, ways to organize care, take care of symptoms, encourage the rehabilitation process. Questions like, “I would like to know what we can do to help with the stiffness and soreness in the wrist of the affected hand and arm?” Or “how can I deal with the doctor” or “insurer” were common in the discussions.
Wishing for what was and impact of what is were also recurrent patterns. Wishing might include the desire for basics things like, “I definitely miss her cooking,” expressing the reality that “until he can do this feat I cannot go back to work even for half day for fear he will fall,” or, “I hope and pray everything will be alright.” One husband shared, “I have intentions to get back to as close as possible the life before the stroke. The situation is improving so slightly but improving nonetheless. It will get better!” Another shared; “it was very relaxing for me. It was great seeing her get some enjoyment out of life again. It just seems to lift something from my back when she’s enjoying herself. This gives me hope that we will get back to some semblance of normalcy.”
When discussing the impact of caregiving, fatigue often came up. Caregivers would say, “We’ve been tired” or would describe how they were “trying to get rest, (and) try to relax.” Caregivers would also share their worries and concerns in their interviews. For example, “[I] worry about another seizure.” Another posted that she was, “beginning to feel guilty that she isn’t able to help him enough to do his exercises…” Other could say, “my wife and I are managing her stroke pretty well with the assistance of our children andneighbors,” and “it [stroke] has brought us a lot closer, and made me realize how valuable time really is.”Discussion
Payne (1988) noted that the process of role modification is a slow, difficult one and which is particularly true with the “drastic nature of a CVA” (p. 191) “The family desperately wants to return to ‘normal,’ though family members have no idea what this new ‘normal’ will be. This time of change and disequilibrium is very upsetting to the family” (Payne, p. 191).
Assuming and learning the caregiver role does not come with a simple set of instructions. Each experience is a new challenge that incorporates the outcome of the stroke along with ongoing family roles and dynamics that are forced into new unknown context. As adults, the caregivers and care recipients have well-established roles and relationships that have changed dramatically. The caregivers are now spouse, friend, or daughter/daughter-in-law, as well as caregiver, housekeeper and rehabilitationist. They were confronted with concerns about not doing enough or too much while wanting things to be back to normal. Edwards and Ruettiger (2002) reported caregiver difficulty in confronting these issues. Trying to keep a balance in one’s life, while learning new roles and responsibilities creates an environment that can be fraught with stress. The caregivers’ Web-based discussions and interviews demonstrate efforts to control the situation, make the changes needed and stabilize when possible.
The reality that the Caring~Web© intervention provided support in this process came through clearly, as one male caregiver shared that he “found being in the study was very helpful.” He “considered that [Caring~Web© was] his support group.” At the end of three months one caregiver in signing off in the discussion group wrote, “We were given great encouragement by all of you.” Another caregiver shared that he was “not sure how I would cope with it [stroke] but with our [Ask the Nurse] on our side I think I and all of us are in good hands.” “Because the caregiver and patient must together deal with the sequelae of stroke, they are, in a sense, both ‘stroke survivors’ and are thus placed into a mutual and interdependent relationship” (Williams & Dahl, 2002, p.23). Providing support to the caregiver indeed provides support to both.
These caregivers gave and received support from each other and the nurse specialist, as they learned and adapted to their new roles. Caring~Web© provided an in home Web-based support system that they valued and used as part of their learning and caring process. These findings are similar to face-to-face support as well as other online support findings (Elliott et al., 1999, Finn, 1999).
As a pilot study there are some known limitations from the onset. First is sample size. Nine key informants or participants while not a small size given the intensity of discussion and interview interaction over a three month period of time (n=563), were purposively selected and there was no effort to compare use or non use of Caring~Web©. A second issue is the ability to transfer findings. Once again the numbers limit transferability and indeed are not the intent of this qualitative pilot. Rather the credibility of the online experience shared is the focus. In addition the word rural has a defined distance meaning in the study and would not apply to rural dwellers living outside the range of a level one trauma center.
Another factor is that as a purposive convenience sample, the actual participants do not reflect the incidence of male caregiving. Houde (2003) noted that approximately twenty-eight per cent of care giving is done by male caregivers. She also described the need for further research related to male caregivers and their needs. This study had five men (44%) as caregivers and adds to the exploration of the male caregiving experience.Implications and Summary
The caregivers’ need to learn their role was clear, as they discussed the basics of managing activities of daily living and problem solving strategies. They were open with their thoughts and feeling about the changes in their lives. Their descriptions reinforce the system maintenance and system change constructs that targeted control, stability and growth. The caregivers found the support of the Web-based group and nurse specialist valuable in facing the changes these new challenges brought. These findings reinforce the need for nurses to identify the caregiver as a recipient of care assisting, supporting them as they adjust to this role. Identifying support systems early in the rehabilitation process can result in a successful satisfying outcome to the experience of care giving.
The use of Caring~Web© with rural caregivers has demonstrated effectiveness similar to the earlier urban caregiver findings (Govoni et al., 2003, Pierce et al., 2002). The potential to reach out through cyberspace to provide supportive intervention is an important opportunity for nursing’s future. This type of intervention can make the difference of success or failure of a home discharge. The feeling of support and not being alone can assist caregivers as they face difficult changes in their lives.
Note: The authors gratefully acknowledge a research grant from the Rehabilitation Nursing Foundation, Association of Rehabilitation Nurses.
American Heart Association. (2003). Impact of Stroke . American Stroke Association. Retrieved on September 6, 2003 from http://www.strokeassociation.org/presenter.jhtml?identifier=1200037
Anderson, C.S., Linto, J., & Stewart-Wynne, E.G. (1995). A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke. 26 , 843-849.
Barnes, S. S. (2003) Computer-mediated communication: Human-to-human communication across the Internet. Boston, MA: Allyn and Bacon.
Bass, D., McClendon, M., Brennan, P., & McCarthy, C. (1998). The buffering effect of a computer support network on caregiver strain. The Journal of Mental Health and Aging.10(1), 20-43.
Brennan, P., Moore, S., & Smyth, S. (1995). The effects of a special computer network on AD caregivers. Nursing Research, 44(3), 166-172.
Burton, L. C., Zdaniuk, B., Schulz, R., Jackson, S., & Hirsch, C. (2003). Transitions in spousal caregiving. The Gerontologist, 43(2), 230-241.
Coeling, H. V., Biordi, D.L., & Theis, S. L. (2003). Negotiating dyadic identify between caregivers and care receivers. Journal of Nursing Scholarship, 35(1) 21-25.
Edwards, N.E., & Ruettiger, K.M. (2002). The influence of caregiver burden on patients’ management of Parkinson’s disease: Implications for rehabilitation nursing. Rehabilitation Nursing, 27(5) 182-186, 198.
Elliott, T.R., Shewchuk, R.M., & Richards, J.S. (1999). Caregiver social problem-solving abilities and family member adjustment to recent-onset physical disability. Rehabilitation Psychology, 44(1) 104-123.
Emerson, R., Fretz, R., & Shaw, L. (1995). Writing Ethnographic Fieldnotes. Chicago IL: The University of Chicago Press.
Farren, C.J. (2001). Family caregiver intervention research: Where have we been? Where are we going? Journal of Gerontological Nursing 27(7) 38-45.
Finfgeld, D. L. (2000). Therapeutic groups online: The good, the bad and the unknown. Issues in Mental Health Nursing, 21, 241-255.
Finn, J. (1999). An exploration of helping process in an online self-help group focusing on issues of disability. Health & Social Work, 24 (3) 220-231.
Friedemann, M-L. (1995). The framework of systematic organization: A conceptual approach to practice and research with families and family members. Thousand Oaks, CA: Sage.
Friedemann, M-L. (2003). The framework of systemic organization. Retrieved May 28, 2003, from http://www.fiu.edu/~friedemn
Govoni, A., Pierce, L., & Steiner, V. (2003). Role of the nurse specialist on Caring~Web ©. Online Journal of Nursing Information, 7(1), http://eaa-knowledge.com/ojni/ni/303/caringweb.htm
Granger, C., & Hamilton, B. (1993). The Uniform Data System for medical rehabilitation report of first admission for 1990. American Journal of Physical Medicine and Rehabilitation. 3(1), 36-56.
Houde, S. C. (2002). Methodological issues in male caregiver research: an integrative review of the literature. Journal of Advanced Nursing, 40(5) 626-640.
Hunt, C. K. (2003). Concepts in caregiver research. Journal of Nursing Scholarship. 35(1) 27-32.
Korenman, J., & Wyatt, N. (1996) Group dynamics in an e-mail forum. In S. C. Herring (ed) Computer-mediated communication: Linguistic, social and cross-cultural perspectives. Philadelphia, PA: John Benjamins Publishing Company.
Liu, G. Z. (1999). Virtual community presence in Internet relay chatting. Journal of Computer Mediated Communication, 5(1) available on line http://www.ascusc.org/jcmc/vol5/issue1/liu.html
Notess, G. R. (1999). Communications and community on Websites. Online, 23(4) 65-68.
Oermann, M. H., Lesley, M., & Kuefler, S.F. (2002). Using the Internet to teach consumers about quality. Joint Commission Journal on Quality Improvement. 28(2) 83-89.
Payne, M. (1988). Utilizing role theory to assist the family with sudden disability. Rehabilitation Nursing, 13 (4), 191-194.
Pierce, L. (2001a). Coherence in the urban family caregiver role with African American stroke survivors. Topics in Stroke Rehabilitation, 8(3), 64-72.
Pierce, L. (2001b). Caring and expressions of spirituality by urban caregivers of people with stroke in African American families. Qualitative Health Research, 11(3), 339-352.
Pierce, L. (2001c). Caring and expressions of stability by urban caregivers of persons with stroke within African American family systems. Rehabilitation Nursing, 26(3) 100-107, 116.
Pierce, L., Rupp, G., Hicks, B., & Steiner, V. (2003). Meeting the educational needs for caregivers and survivors of stroke. Gerontology and Geriatrics Education. 24 (4). 75-90.
Pierce, L., & Salter, J. (1988). Stroke support group: A reality. Rehabilitation Nursing, 13(4). 189-190, 197.
Pierce, L., Steiner, V., Govoni, Hicks, B., A. Thompson, T.C., & Friedemann, M-L. (2003). Caregivers pull together and feel connected in caring for persons with stroke. Neuroscience Nursing. 36 (1). 32-39.
Pierce, L., Steiner, V., & Govoni, A. (2002). In-home, on-line support for caregivers of persons with stroke: A feasibility study. CIN: Computers, Informatics Nursing, 20(4) 157-164.
Porter D. (Ed.). (1997). Internet culture. New York: Routledge.
Richards, L. (2000). N 5 Reference guide. QSR International PTY.LTD.
Schumacher, K.L., Steward, B.J., & Archbold, P.G. (1998). Conceptualization and measurement of doing family caregiving well. Journal of Nursing Scholarship. 30(1), 63-69.
Steiner, V., & Pierce, L. (2002). Building a web of support for caregivers of persons with stroke. Topics in Stroke Rehabilitation, 9(3) 102-111.
Streubert, H.J., & Carpenter, D.R. (1999). Qualitative research in nursing. Philadelphia PA: Lippincott Publication.
Szabo, V., & Strang, V.R. (1999). Experiencing control in caregiving. Journal of Nursing Scholarship, 31(1) 71-75.
Weinert, C. (2000). Social support in cyberspace for women with chronic illness. Rehabilitation Nursing, 25(4), 129-135.
Williams, A. M., & Dahl, C.W. (2002). Patient and caregiver perceptions of stroke survivor behavior: A comparison. Rehabilitation Nursing, 27(1), 19-24.
Williams, M.A., Oberst, M., Bjorklund, B., & Hughes, S. (1996). Family caregiving in cases of hip fractures. Rehabilitation Nursing, 21(3), 124-31.
Teresa Cervantez Thompson, PhD, RN, CRRN-A
Dr. Thompson is an Assistant Professor in the School of Nursing at the Oakland University in Rochester Michigan. She is interested in rehabilitation, qualitative research, computer mediated communication and the meanings of care and caring. A recent publication includes "RehabNurse-L: An analysis of the rehabilitation nursing LISTSERV" published with B. Penprase in Rehabilitation Nursing in 2004.
Linda L. Pierce, PhD, RN, CNS, CRRN, FAHA
Dr. Pierce is a professor of nursing at the Medical College of Ohio at Toledo. Her research interest is family caring and caregiving for persons with stroke. Two recent publications centered on caregivers include "What are male caregivers talking about?" in Topics in Stroke Rehabilitation and "Caring~Web: On-line support for caregivers of persons with stroke living in rural settings" in Rehabilitation Nursing.
Victoria Steiner, PhD
Dr. Steiner is an Assistant Professor in the Department of Medicine at the Medical College of Ohio at Toledo. She is interested in how individuals cope with the challenges they encounter in their lives as they age, including functional decline, caregiving, and chronic illnesses such as Alzheimer's disease and stroke. A recent publication includes "Evaluation of Caring~Web© by adult computer students" in the Journal on Information Technology in Healthcare.
Amy L. Govoni, MSN, RN, CS
Professor Govoni has taught at Cleveland State University School of Nursing since 1993 and specializes in psychiatric/mental health. She maintains a practice with psychiatric home care clients. Professor Govoni has 14 years of rehabilitation nursing experience as a Psychiatric Clinical Nurse Specialist that prepared her for the Ask the Nurse and co-investigator role in this study.
Barbara Hicks, MSN, RNC
Barbara Hicks is an Associate Professor in the School of Nursing at the Medical College of Ohio at Toledo and practices as a Gerontological Clinical Nurse Specialist in a Geriatric Center in the same institution. Her research and practice focus is chronic illness, education, and caregiving. Recent publications involve research with caregivers of individuals with stroke.
Marie-Luise Friedemann, PhD
Dr. Friedemann is Professor, Researcher and family nurse theorist at Florida International University at Miami. She is known for her Theory of Systemic Organization and the Assessment of Strategies in Families (ASF-E) and works in multiple international partnerships for theory building, family nursing education and research. Her research focus is caregiving families and planning for longterm care.