Young Females’ Perceived Experience of Caring for Husbands with Stroke 

By

Kimberly Drummond MSN, RN, Linda L. Pierce, PhD, RN, CNS, CRRN, FAHA,

Victoria Steiner, PhD, Barbara Hicks, MSN, RNC

 

Citation:

Drummond, K., Pierce, L., Steiner, V., & Hicks, B. (2007). Young Females’ Perceived Experience of Caring for Husbands with Stroke. Online Journal of Nursing Informatics (OJNI), 11, (2) [Online]. Available at http://ojni.org/11_2/drummond.htm

 

Abstract

Purpose: The purpose of this secondary analysis study was to explore young females’ perceived experience of caring, as learned from a web-based discussion group, in the first year of their husbands’ post-stroke recovery. Method: Narrative email messages from three wives were gathered as part of a larger study that focused on caring. Data (email entries=214) were analyzed and drawn to Friedemann’s framework of systemic organization. Findings: Four themes emerged from these data: being social, giving and receiving support, evolving family relationships, and becoming frustrated. Conclusions: These wives focused on doing everything to maintain their systems: self and family [system maintenance in Friedemann’s terms]. Additionally, they focused on coherence or feeling connected and pulling together, as they strove for congruence or a balance in their lives. Implications: Nurses can use this information to design or improve holistic interventions for wives new to the role of caring for their husbands with stroke. 

Key Words: Young Women, Spousal Caregiver, Caring, Stroke, Web-based Support

 

Young Females’ Perceived Experience of Caring for Husbands with Stroke 

Stroke is one of the most common medical events in the United States. Every year approximately 500,000 people have a first stroke, while another 200,000 experience a recurrent attack. There are over 5 million people with stroke living today, making stroke the leading cause of long-term disability in the United States (American Stroke Association [ASA], 2006). Nearly 68% of these persons require care at home by family members (Dorsey & Vaca, 1998) and the majority of this care is provided by females (National Alliance for Caregiving & AARP, 2004; National Women’s Health Information Center, 2006). As part of a larger study that examined the experience of caring, email messages were posted on a web-based support group on Caring~Webã (Steiner & Pierce, 2002) by young wives caring for their husbands with stroke. The purpose of this study was to explore young females’ perceived experience of caring, as learned from the email messages on a web-based discussion group, in the first year of their husbands’ post-stroke recovery. Through these messages to other caregivers and a nurse specialist during the first year of their husbands’ post-stroke recovery, the females’ perceived experience of caring became known and is reported in this article.

Background

The role of caregiver for females is common in our society. By nature, females are caregivers to children and other relatives. The average female caregiver is 46 years of age, married, and working outside of the home (National Alliance for Caregiving & AARP, 2004) with little or no training for this caregiving role (Crawford-Andrews, 2001; Teel, Duncan, & Lai, 2001). Caregiving for a loved one may be both a difficult and rewarding experience, as female caregivers balance a variety of family responsibilities.

Negative Experiences in Caring

Negative caregivers’ experiences, often referred to as caregiver burden, have long been reported to have psychological and physical implications for the caregiver (Browning & Schwirian, 1994; Crawford-Andrews, 2001). According to Berg, Palomaki, Lonnqvist, Lehtihalmes, and Kaste (2005), 30% of caregivers are depressed. Teel et al. (2001) reported an inverse relationship between physical and mental health with depression and perceived stress for caregivers of persons with stroke. Female caregivers caring for loved ones at home have many roles and duties including those outside of the caregiving experience itself, such as paid or volunteer work outside of the home that can lead to these psychological and physical consequences. Edwards, Zarit, Stephens and Townsend (2002) reported a relationship between conflict at the job and role strain and worry in caregivers caring for people with cognitive deficits. Caregiver burden increased because of the multiple duties and responsibilities of the caregiver (Browning & Schwirian, 1994). 

Positive Experiences in Caring

While it may be tempting to conceptualize caregiving as a purely negative process that produces burden, there is evidence of feelings of well-being or positive effects of caring on the caregivers. In fact, these positive outcomes are likely to be the motivations to continue the caring relationship. Positive caregivers’ experiences are noted to include stronger family bonds and feelings of connectedness among family members and friends (Farran, Keane-Hagerty, Salloway, Kupferer, & Wilken, 1991; Lee, Brennan, & Daly, 2001; Parris-Stephens, & Townsend, 1997; Pierce, 2001; Pierce, Steiner, Govoni, Hicks, Thompson, & Friedemann, 2004). Caregivers experienced positive aspects of caregiving that included a sense of loyalty, acceptance, feeling good, and satisfaction with helping others (Johnson, 1998). Caregivers also found personal meaning and purpose (Davis & Grant, 1994) and satisfaction (Cohen, Colantonio, & Vernich, 2002; Nolan & Grant, 1989) in the caregiver experience. A basic factor leading to satisfaction was the caregivers’ ability to protect their own psyche from negative self-perception and threatening emotions, such as guilt. At a higher level, this positive self-image provided a chance for personal development and an opportunity to better understand the human condition.

Web-based Support in Caring

The World Wide Web is the place where 29% of caregivers get most of their information (National Alliance for Caregiving & AARP, 2004). In addition, web-based discussion groups are one way for people to continue personal growth and connect with a support system (Bacon, Condon, & Fernsler, 2000). Pierce and associates (2004) determined that one major theme among web-based support group participants, who were caregivers of persons with stroke, was a sense of pulling together and feeling connected. These caregivers expressed an ability to connect with persons in a similar situation, as well as a nurse to gain support and education throughout the first 3-months of the caregiving experience (Pierce, et al.). Web-based support groups help to bridge distance, time, and multiple obligation difficulties to provide an effective and accessible means of support for caregivers (Bacon, et al., 2000; Pierce, et al., 2002; White & Dorman, 2000).

Method

With Institutional Review Board approval, participants were recruited from northern Ohio and southern Michigan for the National Institutes of Health, National Institute of Nursing Research parent study that examined the experience of caring. During June 2002 – August 2004, 8 women were caring for husbands with stroke, but only three of these wives met the inclusion criteria of being (a) between the ages of 30 – 50 years, (b) enrolled in Caring~Webã, the support and education web site (Steiner & Pierce, 2002), (c) and a caregiver in the study for 1 year. To examine the experience of these three caregivers during the first year of caring for their husbands following a stroke, a secondary content analysis of their email messages posted to the Caring~Web discussion group was conducted. 

Web-based Discussion Group

            Caretalk is a non-structured, asynchronous email discussion group component of Caring~Web that connects the caregiver with other caregivers and the nurse specialist 24 hours a day/7 days a week (Pierce, et al., 2004; Steiner & Pierce, 2002). The nurse specialist provides educational information and support for the caregivers via the discussion group.  All participants had Internet access, which was required for Caring~Web intervention   Some used their own computer for Internet access, but most used MSN/TVä, an equipment system that provides access to the Internet on a television. A computer technician installed the MSN/TV™ equipment and provided training for all participants. A training manual was made available to the participants to familiarize themselves with MSN/TV™ and to particular components of Caring~Web including the steps and passwords needed to access Caretalk. The computer technician was available to the participants via telephone during the day for assistance with technical difficulties (Pierce, Steiner, & Govoni, 2002). Data collection began when the participant entered the Caretalk discussion group and ended after twelve months. There was a usual group of 11 to 13 caregivers that participated in the Caretalk discussion concurrently.

Data Analysis

This current study is a secondary analysis of data previously collected for the parent NINR study. The secondary analysis method allowed the researchers to analyze the data in a different 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 suspending their self-assumptions or ideas about the experience before beginning the analyses (Polit & Beck, 2003).  For example, the researchers bracketed the notion that young female caregivers would have a similar experience to the larger group of caregivers.

           The narrative electronic data (214 archived email entries) were analyzed using Norwood's (2000) rigorous process of content analysis consisting of three phases: deductive, inductive, and integrative. The deductive phase required converting the data from narrative form to more manageable units (Norwood). The four investigators first read the email messages [uncoded] from the female participants 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 (see Table 1) and developed by the researchers for the parent NINR study (Pierce, Steiner, Govoni, Hicks, Thompson, & Friedemann, 2004).

 

Table 1:  Friedemann’s (1995, 2006) framework of systemic organization.

Process Dimensions:

 

Congruence:

 

Congruence occurs through balancing and reconciling the four targets in many areas of daily living and results in perfect health. While congruence is continually attempted, it is never fully realized because changes and conflict continuously threaten the individual system’s operation. Next, the inductive and integration phases of analysis began (Norwood, 2000). The four investigators individually labeled themes that emerged from these coded data during the inductive phase. The investigators then discussed these themes, 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. For this current study, themes were drawn to Friedemann's (1995, 2006) process dimensions of system maintenance, system change, coherence, individuation, and congruence based on the descriptions within the theory.

 

 

Results

Sample Characteristics

The real names of the wives and their family members have been changed in order to protect their anonymity. The 3 women were Caucasian and ranged in age from 32 to 47 years. Their husbands’ were Caucasian and between 33 – 54 years old. Two of the families had children still in the home with one having two toddlers [caregiver Peggy] and the other having a teenager [caregiver Joan]. The other woman [caregiver Connie] and her husband had no children. Each woman was employed outside of the home.

Findings

The central themes of 1) being social, 2) giving and receiving support, 3) evolving family relationships, and 4) becoming frustrated emerged from these data (see Table 2). The women often participated in email conversations throughout the 12 months, typically by extending a welcome to a new member or sharing about their daily activities. The women’s messages were supportive of each other with encouraging words, helpful tips, and information. Spirituality was interwoven throughout the supportive messages. In addition, the women discussed their family members and the evolution of their relationships since their husbands’ stroke, as they worked to preserve their family. The women also described frustration with their husbands, family, and services within the community. Each of these themes is discussed and supported with brief excerpts from the data.

 

Table 2: Themes to Friedemann's (1995, 2006) framework of systemic organization.

Themes

Sub-Topics

Process Dimensions

Systemic Targets

 

 

 

 

Being Social

  • Socializing within the discussion group

System Maintenance & Coherence

Stability

Giving and Receiving Support

  • Encouraging other participants

System Maintenance

Stability

  • Sharing information with other participants

System Maintenance

Stability

  • Role and practice of religion

System Maintenance

Stability

  • Impact of religion on themselves

Coherence

Spirituality

Evolving Family Relationships

  • Changing relationships or behaviors of children

System Maintenance

Stability

Becoming Frustrated

  • Feelings of conflict, anger and being overwhelmed

System Maintenance

Control & Stability

Being social. Joan’s following message is one example that represents the socialization among the caregivers of the web-based discussion group. She wrote, “Welcome to our elite club. There is more support here than you could imagine…Let us know a little bit about your situation, we all would like to hear” and “I have found this [discussion group] to be a great escape. You can get great advice, wisdom, and real answers to all your questions.”

Giving and Receiving Support. The caregivers showed support by giving out information related to the caregiver role. For example, they shared information about what they thought were the best hospitals in the area, including what outpatient therapy services worked for them and their husbands. They also told each other about what hospitals would take certain insurance plans and how to deal with the healthcare system. 

Many of their messages of support included references to spirituality. For instance, Peggy said, “My prayers are with you, God Bless you all, and may He watch over you and carry each of you through.” Connie offered words of encouragement to a male participant, as she said, “I pray you will have patience and wisdom as you care for your wife. And don’t forget to take care of yourself.”

Two of the caregivers discussed the impact of religion on themselves and their husbands. Peggy wrote,

We attend church weekly and my husband served [the church] before his stroke, but I wouldn’t exactly characterize us as ‘bible thumpers.’ However, when he was in the hospital, we asked for the prayers and good thoughts of all of our friends, family, and complete strangers. We both have said that we feel the power of God and it sees us through.

Joan shared, “We have come to grips with the disability and hope that God will favor us. More faith in God I guess.” Peggy also discussed spirituality with regard to the stroke itself, she said, “Although I cannot say that I am glad for the stroke, we have truly seen the blessings that we have been given. Our family and friends have been wonderful.”

Evolving family relationships. The two caregivers with children discussed the changes in spousal relationships and behaviors of their children, since their husband’s stroke. The following example was from Peggy regarding her two small children. She said, “I work outside the home part time and have been trying very hard to keep everything as near to normal for the kids as I possibly can.”  In another message, Peggy wrote about the impact of her one daughter’s behavior since the stroke. She shared, 

Megan (age 3 ½) is getting a little more independent again. After my husband’s stroke, she really became clingy. This weekend she went with my cousin to the church festival. That was such a big step considering she won’t leave my side most days. I think that my husband’s stroke affected the kids more than we ever could have guessed.

Joan had a 16-year old daughter in the home and wrote the following message early in her participation with the discussion group, “My daughter has a hard time understanding why her life has to change, but I think it’s just her age.” Later in the year Joan said, “We have a 16-year old daughter, going on 25, so she understands, but she doesn’t like being 2nd in line [to my husband’s needs]….” These women’s words (a) describe evolving changes within their families since their husbands’ stroke as they struggled with maintaining the family and (b) also begin to demonstrate frustration with dealing with caring.  

Frustrations in caring. The changes in the families of these caregivers were sometimes overwhelming, and caused them to become frustrated with the caregiving experience. Peggy wrote,

…It’s hard to see him just kind of zone out in front of the television while the kids are trying to get him to play or read a story. The rational side of me knows that he’s tired or overwhelmed, but I see the babies’ disappointment and I see them turning to me for even the simplest tasks when their daddy is sitting right next to them and it is really starting to get to me.

Connie discussed her frustration with caring for her husband, She said, “It’s (caregiving) been hard for me. On a scale of 1 to 10, 10 being painful, I would say my days lately have been running around 7.”  She gave the following explanation:

He’ll [husband] complain about his medications, not wanting to take them…Terry could take his medicines by himself now. But I don’t trust that he’d take them everyday or at the right times daily. So, I still give him his medicines. Stuff like that. It’s very frustrating.

Joan frequently discussed her frustration with caregiving and her husband’s depressive symptoms. One instance that she shared is, “Tom is really down in the dumps, and I did all that work to pick him up, but it didn’t work…Running out of ideas for Tom, he is starting to bring me down.” Joan went on to describe her sense of being overwhelmed with Tom’s mood in another message. She shared,

Hubby is so hard to please, and after 8 hours of work he has been waiting for me to come and make him feel better. When I think he should be on top of the world he is crying, I get him up in spirits, and it’s over, it takes me longer to get him up than it lasts. Sometimes I’m wore out just fighting his moods…Will my life be solely what my hubby wants, doesn’t wants, must have?

      The women also discussed conflicts that they had with their husbands in day after day of caregiving.  Peggy wrote, “Yesterday I shouted at my husband in front of my sister’s family that I needed him to stop watching television and help me with the kids. It was so unlike the ‘before’ me, but I was just frustrated.” Connie discussed a trip filled with conflict. She said,

…I was hoping, maybe too high expectations, really, that Terry would fall in love with living again while we were in Florida. That didn’t happen. He enjoyed the days, but he came back home feeling bad about all the things that he can no longer do and feeling ready to die.

Joan also described a conflict with her husband. She noted,

One time hubby got so ugly with me that I just stormed out of the house. I got into my car and left with hubby at the door with his walker crying [for me] to come back. I just told him to take some drugs and drove off…I didn’t get too far down the road before I had cooled off and felt guilty. But the 5-minute drive didn’t hurt him much and he decided to work with me instead of fighting me.

 

Discussion

Displayed in Table 2, all the themes were drawn to the concepts of Friedemann’s (1995, 2006) framework of systemic organization. This study found that young women caregivers used a web-based discussion group to share experiences, find and offer information, and provide encouragement to one another (White & Dorman, 2000) in the first year of caring for their husbands with stroke. In the group, socialization occurred. Socializing can be viewed as connecting with others in a similar situation and providing constancy or, in Friedemann’s (1995, 2006) terms, coherence as well as providing system maintenance targeted at stability, which are important functions of this web-based discussion group (Bacon, et al., 2000). The young female caregivers reached out to one another and felt connected (Farran, et al., 1991; Lee, et al., 2001; Parris-Stephens, & Townsend, 1997; Pierce, 2001; Pierce, Steiner, Govoni, Hicks, Thompson, & Friedemann, 2004) and this helped these female caregivers to maintain steadiness in their lives (Friedemann).

The caregivers offered and obtained support related to the exchange of information regarding services important to caregiving, as well as of a spiritual nature. The theme of giving and receiving support that included spirituality helped the women to survive the caregiving experience. This support helped maintain their individual and family system or system maintenance, as well as provided feelings of spiritual and human togetherness or coherence (Friedemann, 1995, 2006; Pierce, et al., 2004). Discussion entries that focused on the practice of religion such as prayer are included in system maintenance that targeted stability, while statements involving a person’s view or feelings of religious impact are included in Friedemann’s process dimension of coherence target at spirituality.

Family relationships evolved, as they protected themselves and other family members from alterations brought on by the stroke event and sought to maintain stability within their family, i.e., system maintenance (Friedemann, 1995, 2006). The women discussed their children and the impact the stroke had on them, as well as reducing the threat of changes. They tried to balance employment and caring responsibilities within the family. Caregiver burden that impacts mind, body, and spirit can be linked to the theme of becoming frustrated (Browning & Schwirian, 1994; Teel, et al., 2001). The women in this study expressed their experiences with conflicts with their husbands and children, feeling down about their husbands’ attitudes or moods, and feeling upset about their own personal time and health. These frustrations were related to adaptations and conflicts within the family system as they tried to maintain self and family (Friedemann).

In summary, every theme, pictured in Table 2, was related to Friedemann’s (1995, 2006) process dimension of system maintenance, which targets stability and/or control. In addition, Friedemann’s coherence process dimension was evident and also targets stability, as well as spirituality. Stability was the primary target as all four themes from this study fall into a process dimension that aims for this systemic target.  Additionally, spirituality and control were represented as being a focus, as these young female caregivers sought congruence or balance in maintaining self and family in caring for their husband with stroke. No themes were identified with respect to Friedemann’s process dimensions of individuation or system change. This may be due to the fact that the messages shared in the web-based discussion group represented only a segment of the young female caregivers’ life. Individuation and/or system change may have occurred, but it was not shared through their discussion messages. 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 these caregivers’ system change(s) to be known.

 

Implications for Nursing Practice

These findings represent three young female caregivers’ perceived experience of caring for their husbands with stroke. The reader must decide if these findings have applicability to their caregiver population. Thus, recommendations for future research include examining other female spousal caregivers to note differences that may be related to ethnic and cultural aspects of caring or geographical settings outside of the mid-western United States.

Nonetheless, the results of this study provide relevant implications for nursing practice that include a better understanding of what young female caregivers of husbands with stroke are experiencing in the first year of caring. These findings remind nurses of the need to include the caregiver as someone who also needs nursing care. Too often caregivers are ignored and they are crucial to successful home caring. When nurses expand their 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 young female spousal caregivers, and also their families, could decrease the 14 billion dollars per year of direct care costs for nursing home care for persons with stroke (ASA, 2006).

Mediated communication such as this web-based support intervention provided an occasion for socialization, mental and spiritual support given and received, as well as an outlet for expressing how their family was evolving and sharing frustrations related to the caregiver experience. A specific application of the results of this study is to offer and encourage opportunities for web-based support and education to young female caregivers, as they care for their husband with stroke and family. There are a number of established web-based support groups, i.e., the American Stroke Association (www.strokeassociation.org) or the National Stroke Association (www.stroke.org) geared to caregivers of people with stroke or the Family Caregiver Alliance (www.caregiver.org) for caregivers dealing with chronic and disabling conditions. Web-based support groups are made up of people all over the world who have similar interests or problems. They meet over the Internet through email lists, message boards, or chat rooms. These groups are active 24 hours a day / 7 days a week and can be accessed at the caregivers’ convenience and when they need help most. These groups can be entered without leaving home, which is good for people with limited time and/or transportation problems, or they can be accessed on computers for public use at libraries or shopping malls. For those nurses charged with starting a web-based support group or for nurses who facilitate these groups, the themes derived from the data of this study may provide ideas for what types of support and information would be appropriate to use with participants.

Nurses may apply the findings from this study to young female caregivers by offering information related to promoting the overall health of the family. Young female caregivers are often required to care for children, as well as their spouse after the stroke. Nurses can provide mothers of young children with information about talking with their children about the stroke and the effects on the family, encouraging the women to listen to their children’s concerns, and educating the women on the stages of child development and the related responses to growth within the family system during these stages.

 

Conclusions

In the first year of caring for their husbands, these young females focused on doing everything in their power to maintain their systems: self and family. In addition, the women focused on coherence or feeling connected and pulling together. They were striving for congruence, or a sense of balance within their lives. They socialized, gave and received support, discussed their family and the adaptations experienced by their children and husbands, and shared their frustrations in caring for their husband with stroke. The female caregivers used the web-based support group to express themselves and connect with other people in a similar situation. These findings have the potential to be used by nurses in a variety of settings to identify and design holistic interventions for young female, spousal caregivers that impact the quality of their lives.

 

Acknowledgements

            The parent research study was supported by Grant RO1NR007650, National Institute of Nursing Research, National Institute of Health and that research team is acknowledged for their contributions. All caregivers, and especially these young wives, are thanked for their participation. This secondary analysis project was funded by Sigma Theta Tau International, Zeta Theta At-Large Chapter.

 

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Authors’ Bio

 

Kimberly Drummond MSN, RN

Ms. Drummond is an Instructor at The University of Toledo College of Nursing.  She received her Master of Science in Nursing from Medical College of Ohio in 2005 as a Clinical Nurse Specialist and is board certified in Psych/Mental Health Nursing. Her interests for research and practice include caregiving, education, and mental health issues.  Ms. Drummond is a member of Sigma Theta Tau International, Zeta Theta Chapter-At-Large and the Ohio League for Nursing.  Kimberly has been practicing nursing since 1997 and has been involved in nursing education since 2002.  To contact Ms. Kimberly Drummond please email her at Kimberly.Drummond@utoledo.edu.

 

 

Linda L. Pierce, PhD, RN, CNS, CRRN, FAHA

 

Dr. Pierce is a professor of nursing at the University of Toledo College of Nursing. Her research interest is family caring and caregiving for persons with chronic conditions as well as Internet education and support interventions. Two recent publications centered on caregivers include "What are male caregivers talking about?" in Topics in Stroke Rehabilitation and "Perceived Problems of New Caregivers of Persons with Stroke" in Rehabilitation Nursing.

 

 

Victoria Steiner, PhD

 

Dr. Steiner is an Assistant Professor in the College of medicine at the University of 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.

 

 

Barbara Hicks, MSN, RNC

 

Barbara Hicks is an Associate Professor Emerita in the College of Nursing at the University of Toledo and a Gerontological Clinical Nurse Specialist. Her research and practice focus is chronic illness, education, and caregiving. Recent publications involve research with caregivers of individuals with stroke.