1. Coombs, Ursula Eileen

Caregiving for a spouse who has survived a stroke has multidimensional implications for both the partner and the spousal caregiver. A phenomenological study was conducted to examine the experiences of spousal caregivers for stroke survivors. Eight spouses who met the inclusion criteria participated in the study. van Manen's (1997) approach was used to examine the spousal caregivers' experiences. Data were collected through audiotapes from semistructured interviews. The interviews were transcribed to form textual descriptions of the caregivers' experiences. Six interrelated themes emerged through data analysis: experiencing a profound sense of loss, adjusting to a new relationship with a spouse, taking on new responsibilities, feeling the demands of caregiving, having to depend on the support of others, and maintaining hope and optimism. This study contributes to healthcare providers' understanding and knowledge of spousal caregivers for stroke survivors, and supports the need for continued research in this area.


Article Content

Stroke is a major cause of disability and handicap (Clark, 2000). Heart disease and stroke represent the third-leading cause of premature death in Canadians younger than 75 years of age (Health Canada, 2000). Many adults will continue to experience disability because of cerebrovascular disease and will require some type of care. Approximately 10%-30% of all persons who survive a stroke require institutional care after they are discharged from an acute care setting, and the remainder return to a home setting with family caregivers (Dorsey & Vaca, 1998). An important factor in a stroke victim's recovery is the presence of a spouse (Baker, 1993). A stroke frequently results in some disability. The length of caregiving is usually long term and the responsibilities can be extensive. Little is known about the experiences of spousal caregivers of stroke survivors because the focus has traditionally been on the stroke survivor. The purpose of this study was to examine the experiences of spousal caregiving for stroke survivors.



Detrimental effects of caregiving do exist and often are experienced by the spousal caregiver (Blake & Lincoln, 2000; Bugge, Alexander, & Hager, 1999). Because most stroke survivors are older (and require more care) and caregivers are emotionally invested in caring for their spouses, caregiving can cause short- as well as long-term negative health effects (Barnes, Given, & Given, 1992). The health of spousal caregivers is often neglected or takes lower priority over that of the stroke victim (Vanetzian & Corrigan, 1995).


Traditionally, researchers have focused on the needs of the survivor, paying less attention to understanding the role of the survivor's spouse (Robinson-Smith & Mahoney, 1995). Studies indicate that caregiving may affect the physical, mental, social, and sexual health of the caregiver.


The stressful nature of caregiving can also result in poorer mental health, which leads to significant clinical depression among caregivers (Han & Haley, 1999). Sadness, anxiety, and depression were found to be common emotions of a small sample of older spousal caregivers and these emotions resulted in poor emotional health (Robinson-Smith & Mahoney, 1995).


Having a stroke can affect the survivor physically, emotionally, and cognitively, ultimately resulting in behavioral changes. The behavioral and cognitive impairment of the care recipient may be more stressful to the caregiver than the actual physical impairment (Anderson, Linto, & Steward-Wynn, 1995).


Spouses who take on the responsibility of caregiving experience major disruptions in their daily living patterns (Thommessen et al., 2002). Caregiving can affect the social lives of the people providing care, although the extent to which the caregiver's social life is disrupted is highly variable. Social isolation is another problem encountered by caregivers of stroke survivors (Dorsey & Vaca, 1998; Williams, 1994). It is not uncommon for spousal caregivers to feel distressed because of decreased social contacts (King et al., 2001). Changes in their social lives may be a result of caregivers being forced to take on a variety of new roles and responsibilities (Dorsey & Vaca, 1998). A change in their role is one of the first consequences for caregivers of those with debilitating illnesses such as stroke.


Changes in sexual function are frequently a consequence of stroke (Sjogren, 1983), and sexual dysfunction often negatively affects the caregiving spouse (Korpelainen, Nieminen, & Myllyla, 1999). In one study, spouses reported several negative consequences regarding sexual health after their partner had experienced a stroke, including declines in sexual interest, desire for their partner, and participation in sexual activity, as well as decreased sexual satisfaction. Attitudes toward sexuality, fear of poor performance or impairment, and poor communication around sexuality were the primary factors that contributed to these sexual problems.


Although there are numerous studies in the literature that highlight the separate components of the effects of caregiving, not one of them discusses the multidimensional aspects of caregiving as they affect the lives of spousal caregivers of stroke survivors. This study was conducted to look at the phenomena of spousal caregiving from the perspective of the spousal caregivers, and will help readers gain an understanding of the holistic lived experience of spousal caregivers.



This study was undertaken to better understand the experience of spousal caregivers for stroke survivors. This phenomenological study, based on the work of van Manen (1997), was guided by the research question: What is it like for older caregivers to care for a spouse who has survived a stroke?




Because phenomenology seeks to question and understand what a particular experience is like for a person from the perspective of the person experiencing it (van Manen, 1997), it was chosen as the methodology for the study. Phenomenology has at its foundation a holistic perspective of experience as lived. It is this holistic perspective of nursing and phenomenology's requirement of the integrated whole that help make it a useful method to investigate phenomenon important to nursing practice, education, and administration.


Before the interviews began, it was anticipated that six to eight participants would be needed to obtain meaningful data. It is impossible to preselect a sample size until analysis of the data occurs and a repetition of themes emerges. In this study, repetition occurred by the sixth interview. Two additional interviews were conducted to confirm the themes.


Eligibility Criteria

Eligibility criteria for spousal caregivers included the following: participants must be at least 50 years old, have the physical and mental capacity to participate, have the ability to speak English, and currently be giving care at home for a stroke survivor who is at least 1 year poststroke. Stroke survivors were at least 55 years old at the time of the stroke and had no evidence of coexisting terminal illness or other rapidly progressing medical condition. Older spousal caregivers were selected as participants because a younger population would have had a different recovery and experience. In addition, strokes are more common in the older population and therefore more participants from that age group would be available.



Ethical approval was obtained from two ethics review committees before participants were recruited for the study. Potential participants were recruited from the discharge patient list of a rehabilitation unit in an institution in Eastern Canada. Eight caregivers were interviewed for the study; seven participants chose to be interviewed in their homes and one participant was interviewed in an alternate location.


Data Collection

Data were collected through audiotaped interviews. Demographic information for the caregivers was collected to provide a context for the caregiving experience and to describe the participants. Each participant was engaged in two separate interviews, each of which lasted approximately 60-120 minutes. A semistructured interview guide, with five or six guiding questions, was used. At the outset of the interview, participants were asked to describe their caregiving experience. They were then free to present their story however they wanted. The guiding questions were only used as prompts if participants had difficulty expressing their ideas.


Data Analysis

Data analysis began as transcripts became available. The transcriptions were read and reread several times to answer the question: "What statement(s) or phrase(s) seem particularly essential or revealing about the phenomenon or experience being described?" (van Manen, 1997, p. 93). Statements were selected and highlighted, and themes were developed. In the final stage of analysis, after having consulted with the participants, the author identified central themes that collectively described the experience for the eight spousal caregivers who participated in the study.



Five females and three males, ages 57-81 years old, participated; the average age was 65.5 years. All participants were married and living in their own homes. All of the female participants were homemakers, two of the male participants were retired, and the third male was self-employed. They were all primary caregivers and lived in the same household as their spouses. The number of years of caregiving ranged from 1.5 to 5 years; the average length of the caregiving experience was 3.4 years. All spousal caregivers lived in semiurban and rural areas. The female spousal caregivers were the main providers of care to the stroke survivors while the male spousal caregivers had help from home support workers for several hours each day. The stroke survivors' ages ranged from 57 to 81 years; the average age was 68.5 years. All participants, except one, were in a first marriage that had lasted many years, and all participants had adult children. Only one spouse was in a second marriage.


Six interrelated themes emerged from the interview data that provided insight into the experience of spousal caregivers for stroke survivors. All six are essential to the caregiving experience and the order of presentation is not indicative of their importance to the experience.


Experiencing a Profound Sense of Loss

One of the six themes that emerged in the study was that participants experienced a profound sense of loss. The losses experienced by participants deeply affected many aspects of their lives. The participants experienced a loss of leisure time, a loss of freedom, and, of more concern to the participants, the loss of a marital partner.


For the most part, leisure time disappeared for caregivers because they spent most of their time, every day, either directly or indirectly caring for their partners. Spousal caregivers chose to be actively involved in the caregiving, and they felt it was their responsibility to provide this care. Caregivers did not seem to be readily aware of care options, such as home support, assistance from adult children, or help from others. In addition, the physical demands of caregiving contributed to the loss of leisure time. At the end of the day spousal caregivers were often too exhausted to do anything other than lie down and relax before they retired for the day. They also restricted their own activities because their partners' activities were limited, which made them feel guilty about pursuing other interests. One participant remarked, "He's there and he was used to going out too, so now that that's been taken away, it's kind of been taken away from me a bit too."


Spousal caregivers carefully structured the activities that required them to leave their homes because they feared something might happen to their partners in their absence. They were worried that their spouses would fall or have another stroke while they were out of the home. A few of the spousal caregivers who did leave their ill partners alone on occasion only went out for an hour or so. The spousal caregivers experienced a loss of freedom because they often felt confined to their house, especially at night. They used terms such as "housebound," "stuck in this piece of property," and feeling "restricted and barred up in the house." Some of the caregivers felt the confinement more acutely than others and expressed that it was a difficult aspect of adjusting to caregiving.


Loss of the marital relationship spousal caregivers had once known due to the partner's change in health status was the most difficult loss with which to cope. Although specific questions were not asked about the quality of the marital relationship before the stroke, the issue was discussed by participants during the interviews. For couples who had spent a lot of time together doing activities before the stroke, the experience was more challenging because of the limitations placed on them following the stroke. They could not travel. They no longer had the support and help of their partner. One participant expressed the difficulty of losing a marital partner: "I haven't had a conversation with him for the last 4 or 5 years[horizontal ellipsis].I'm going on like, maybe sometimes, like I'm with a stranger!!" Often spousal caregivers could no longer depend on physical or emotional support from their partner. The effects of stroke had left a number of the survivors with physical or cognitive deficits such as confusion, forgetfulness, or pessimistic attitudes that limited survivors' abilities to fully and equally participate in the marital relationship.


Adjusting to a New Relationship with My Spouse

A second theme that emerged during the study was adjusting to a new relationship with a spouse. Changes in the marital partner necessitated an adjustment in the relationship. Caregivers talked about their relationships with their spouses before their partners' strokes. For most, the marital relationship was very much a partnership. Moving from the usual spousal relationship to a caregiver relationship was a major adjustment in these individuals' lives. Participants reported that adjusting to this role was upsetting. Some of the participants recalled how they had made changes in their sleeping arrangements so that they could get more uninterrupted sleep at night and to accommodate their partners.


Despite these key adjustments in their lives and relationships, the caregivers were very much committed to their partners and to their caregiving roles. They described doing everything possible to keep their spouses in the home and to keep them comfortable. The caregivers were very determined to create and maintain as much normalcy as possible, given their spouses' health.


Taking on New Responsibilities

A third theme identified during the study was taking on new responsibilities. Although the participants maintained many of their traditional roles within the home, they were forced to take on new roles and responsibilities now that the partner was no longer able to do much of what he or she had previously done. These new roles and responsibilities consumed much of what used to be the caregivers' leisure time.


The new roles that female spouses assumed were roles and tasks that traditionally were performed by their partners. These tasks were mainly related to yard work and home maintenance. The spousal caregivers often had to compensate for the tasks their partners were unable to do as a result of the stroke. These included activities such as feeding, grooming, and dressing. The repetition of tasks, such as taking their partners to the washroom several times a day, was physically challenging. One caregiver's partner was confined to a wheelchair when she was out of bed. He highlighted the concept of doing double duty, meaning that activities he would do for himself, he then had to repeat for his wife.


Feeling the Demands of Caregiving

The fourth theme that emerged in the study was feeling the demands of caregiving. All of the caregivers were at least 57 years old and experienced many physical and emotional demands associated with the work of caregiving. Some of the participants, at least in the early days of their caregiving experience, described working a 24-hour day. They reported feeling fatigued and sleeping poorly or not at all at night. One of the most physically demanding aspects reported by caregivers was helping spouses bathe. One of the spouses had to get into the tub with her husband in order for him to have a shower. The following is her description of the bathing event: "I braced his leg and put his good leg in, then I helped him lift his bad leg in[horizontal ellipsis]then I could get in and wash him and then I did the same thing to get him out. So then I take him in on the bed, dry him down, and get him dressed."


The female spousal caregivers felt an overwhelming sense of responsibility for the care of their ill partners. They believed it was their responsibility to provide care because it was their spouse. Emotions ranged from feeling that they had no choice in taking on the caregiver role, as evidenced by "I've got no other choice, I just have to," to feelings of duty, "It should be my care."


The spousal caregivers spoke about the stress of caregiving. They experienced new emotions such as guilt and fear. The spousal caregivers were unsure of how to express these emotions and how to cope with them. One participant who felt overwhelmed by the caregiving situation and the inability to express these troubling emotions commented, "Oh my, I don't know what else[horizontal ellipsis]I can't explain, there is stress."


Several spousal caregivers felt guilty when comparing their own vital health with their partners' weakened health status. They also experienced guilt whenever they were out of the home for brief or extended periods because they felt obliged to remain home with their partners.


Caregivers expressed a fear of leaving their partners alone and subsequently injuring themselves. The spousal caregivers also expressed feelings of uncertainty or fear about the future: "I was wondering what's wrong? What are we heading for, you know? What's going to be the outcome of this?"


Having to Depend on Others

The fifth theme that emerged was having to depend on support from others. What became obvious from this research was that the work of caregiving is nearly impossible to maintain without the social support of family and friends in the community. Participants felt that they were fortunate because they had someone to help them with caregiving and related activities. One participant commented, "We had to depend on other people because I don't drive. So we had to depend on our neighbor. We had an excellent neighbor across the street, [who] is no longer there. [The] first couple of years our neighbors used to take the car and take us to [town]."


Transportation emerged as one of the biggest challenges that spousal caregivers faced, and they had to depend on others for help. Public transportation was not readily available in the areas where the couples lived. Transportation issues were especially problematic for wives who did not possess driver's licenses before their husbands' strokes. For three of the five female caregivers this was the case; they depended on family members or friends for transportation.


Although family members did not consistently help with the daily demands of caregiving, the spousal caregivers felt psychologically supported by their families. Caregivers felt that their families would be available to help with caregiving for an hour or two, if requested, yet they did not like asking for support or calling them on a regular basis. One participant emphasized the significance of family support for the spousal caregivers, "For anyone in the same predicament, I would have to stress that the key to it is family support." Support from other caregivers was instrumental to the male spousal caregivers because it enabled them to care for their wives at home (where they felt their partners would be happiest) and allowed the couples to stay together.


In addition to family and other caregiver support, a few of the spousal caregivers cited their faith and trust in God as a source of support. Their relationships with God and the use of prayer, helped some spousal caregivers to continue caregiving.


Maintaining Hope and Optimism

Maintaining hope and optimism was the sixth theme of the study. The ability to remain optimistic about their situation was important to all the caregivers, even though they experienced a sense of loss and were dealing with the heavy demands associated with caregiving.


Despite facing daily challenges and feelings of stress, guilt, and fear, the spousal caregivers were grateful for what they perceived as many blessings. They were grateful that their partners were able to live with them, that the stroke was not more severe, and that their partners were able to speak or walk independently.


Maintaining hope and optimism were how most spousal caregivers coped with the caregiving situations. They expressed hope that their partner could remain at home and that they would be able to continue caregiving in the future. They tried to have something to look forward to, such as having a break to go see the grandchildren or having some time alone. The spousal caregivers maintained an optimistic view about their futures. One participant remarked, "I'm hoping that things will get better." This hope was necessary in order for them to continue caregiving.



Loss is a predominant theme associated with caregiving for stroke survivors and has been reported in different ways. The current study and past literature support the idea that loss is a multidimensional experience. Losses of leisure time and freedom have been expressed as disruptions in leisure time and social activities (Anderson et al., 1995), lack of freedom and personal time (Bugge et al., 1999; Grant & Davis, 1997), and no time for personal care or leisure and feelings of confinement (Periard & Ames, 1993). Other researchers have described loss as a decrease in social activities and the inability to travel (Johnson, 1998; Mumma, 1986; Robinson-Smith & Maloney, 1995), and restrictions in time and activities (Forsberg-Warleby, Moller, & Blomstrand, 2002; Kane, Reinardy, Penrod, & Huck, 1999; Nieboer et al., 1998).


In this particular study, one of the greatest losses was that of the marital relationship couples shared before the stroke. Other researchers have reported that the spousal caregivers they studied talked about the loss of a companion (Johnson, 1998), and loss of closeness in their marriage or independence as a couple (Mumma, 1986).


For the caregivers in this study, one of the greatest challenges was helping their partners with the activities of daily living. The effects of caregiving were often physically manifested as symptoms of fatigue. In previous literature, the physical impact of caregiving has been reported to cause long-term negative health effects (Barnes et al., 1992), decreased health since taking on the caregiving role (Williams, 1993), and exacerbated health problems, such as cardiovascular or gastrointestinal conditions (King et al., 2001). Other physical complaints of spousal caregivers included poor sleep, fatigue, low energy, pain, weight loss or gain, and indigestion (Williams, 1993).


Fear was among the emotions experienced by participants in this study. Fear and uncertainty have also been reported in other studies, whether it was uncertainty about how to care for an ill partner or fear of the unknown (Grant & Davis, 1997; Pierce, 1994). Other fears that emerged in this study were that caregivers' partners would suffer another stroke or that another adverse event would happen. Similar findings have been noted in previous research (Anderson et al., 1995; Pierce, 1994; Scholte op Reimer, de Haan, Rijnders, Limberg, & van den Bos, 1998; Thommessen et al., 2002).


The theme maintaining hope and optimism best exemplified several of the temporal dimensions of these spousal caregivers' lives. These temporal dimensions highlight how the caregivers experienced time; while the caregivers were very busy with their caregiving lives, they remained hopeful about their futures. Although focused on their present role, the caregivers also looked toward the future with hope and optimism. Hope has been examined in neuroscience populations, in individuals with multiple sclerosis, spinal cord injury, and stroke (Fowler, 1995). These studies related to survivors of stroke rather than their spousal caregivers. However, the participants in this study talked about how important it was to maintain hope for a better future. Morse and Penrod (1999) contended that hope facilitates moving beyond present suffering and gaining a new life perspective. Having hope that a caregiving situation will change can help caregivers create a more positive caring experience (Tebb, 1994). Although they were very much aware of their situations and the restrictions on their lives, the hope for a better future helped caregivers cope. Similarly, Davis and Grant (1994) reported that the use of faith and hope was important to the participants in their study. In addition, Miller (2000) explored the role of hope in individuals and caregivers dealing with chronic illness. This researcher maintained that hope is necessary for dealing with adverse situations throughout life. Although Miller primarily examined the effects of hope on the individual with the illness, she did acknowledge its importance among family members as well. People who were able to maintain hope had better levels of adjustment. Hope was an important component in the lives of the participants in the present study and sustained them during their caregiving work.


A lack of research pertaining to the effects of stroke on the survivor's caregiver exists in the literature; healthcare professionals usually focus on the stroke survivor (Robinson-Smith & Maloney, 1995). However, research concerning factors that may affect the spousal relationship of the stroke survivor and caregiver does exist (Kane et al., 1999). According to these researchers, the factors included anger, role reversal, or feelings of growing distance between the caregiver and the care recipient. Spousal caregivers emphasized that the emotional changes in stroke survivors were challenging factors to manage in the relationship (Kauser & Powell, 1996). It is these challenging factors that contribute to the burden perceived among caregivers and result in negative psychological consequences for these individuals (Draper, Poulos, Cole, Poulos, & Erlich, 1992). The participants in this study revealed how difficult it was to cope with their spouse's emotional disparity.


Changes in relationships were a major consequence for the participants in this study. They were now primarily caregivers (as opposed to partners); the character of the partnership had changed dramatically after the stroke, thus resulting in decreased marital satisfaction (Bethoux, Calmels, Gautheron, & Minaire, 1996) and less sexual contact (Korpelainen et al., 1999).


Taking on new responsibilities and roles affected the marital relationship even further. These new responsibilities-assisting with daily activities, preparing meals, maintaining the home, maintaining financial obligations, and supervising and assisting activities-provide clues as to why caregivers frequently suffer adverse physical and psychological health. In a study similar to this one, Denman (1998) illustrated that spousal caregivers reported taking on responsibilities that were previously the domain of their partner. These increased responsibilities contributed to health risks of spousal caregivers (Barnes et al., 1992), caregiver role strain (Alcock, Danbrook, Walker, & Hunt, 1998; Bugge et al., 1999), and activity restriction and depression (Nieboer et al., 1998).


The amount and quality of social support a caregiver receives contributes to successful caregiver role adjustment. The literature on caregiving addresses both the type of support people want and the consequences of not getting adequate support. Caregivers have been reported to have a preference for managing problems on their own (Barusch, 1988) and older people in particular want informal support (Elmstahl, Malmberg, & Annerstedt, 1996).


One of the consequences of taking on the caregiving role and not having assistance from a spouse is the need to depend on the support of others. Research on social networks among older adults suggests why it may be difficult for the participants to look to others for help and support (Barrett & Lynch, 1999). Older marital couples tend to have a smaller support network than widowed or never-married older adults because they rely on each other for help. When their main source of support (i.e., their spouse) is no longer available, they must develop new networks.


Changes in relationships were a major consequence for the participants in this study.


The interviews from this study did not mention health professionals as a form of support. Participants did talk about the role these professionals played in the acute stage of their spouses' illnesses and during hospitalization but not during the period of caregiving examined in this study. This finding is similar to Secrest's (2000), who, in her unstructured interviews, found that primary support persons to stroke survivors did not mention any "therapeutic presence" from nurses. Brereton (1997) suggested that the needs of these families are not well understood by nurses and require greater attention. A review of the literature on how informal caregivers are affected by a stroke in the care recipient (Low, Payne, & Roderick, 1999) supports the need for more research that examines how health services can help these caregivers.



One of the main limitations of this study is that, as a novice researcher, the work of exploring and describing the "lived experience" of participants became quite challenging. Some themes that would have been more obvious to a more experienced researcher may have been missed. Other limitations could fall under what van Manen (1997) described as effects of the research. The author contends that those involved in phenomenological research may indeed be affected by the research. Participants' involvement may generate a number of emotions, both positive and negative. It is unclear to what extent this research affected participants and their caregiving activities. It is hoped that the research activity had a positive effect and that the spousal caregivers were able to reflect on their commitment to their spouses and feel satisfaction and a sense of pride in what they were doing. Participants were given the opportunity to express their feelings about their experiences and this may have been therapeutic for them. One participant, in particular, commented that it was the first time that anyone had asked her about her experience and that usually it was "all about him." Despite these limitations the research does provide some important insights into spousal caregiving that have implications for nursing practice, education, and research.



The findings from this study may help nurses practicing in hospitals, other institutions, and within the community to understand the impact of the caregiving experience on spousal caregivers and other family members. This knowledge may result in more attention being provided to the caregiver, which could help to facilitate a more positive caregiving experience. It is imperative that nurses, as well as other health professionals, thoroughly assess a spouse's ability to adopt and manage the responsibilities of caregiving.


A multidimensional assessment that encompasses all aspects of the caregiver's life, including an understanding of his or her new role, is essential. Long-term follow-up, support, and personal contact with a healthcare provider are crucial for both the stroke survivor and the caregiver. The results also highlight a need to help caregivers develop new networks. Contact with healthcare professionals, home support workers, family, friends, and community agencies provides a support system for the spousal caregiver and the stroke survivor. By understanding the spousal caregivers' concerns and challenges, this support system may be able to initiate interventions to ease difficulties (e.g., feeling overwhelming loss, having too many responsibilities, and dealing with the excessive demands of caregiving). A dedicated support system has the potential to decrease the negative physical and psychological impacts of a stroke on the spousal caregiver and stroke survivor. Making caregivers aware that their responses to the demands of caregiving are similar to others in the same situation may help alleviate fear by validating the caregiver's experience.


Community health nurses can also play a key role in facilitating respite care for the caregiver, freeing up time to attend appointments, support group meetings, and church services; to shop; to visit with friends; or to do any number of things that promote self-care and minimize feelings of isolation. In addition, healthcare professionals can look for signs of caregiver stress and work with the caregivers and survivors to develop an alternate plan of care should the health status of the survivor or caregiver change.


Through interactions with spousal caregivers, nurses can help build hope and optimism. By listening to their stories, validating their feelings, and encouraging their positive management of the challenges they face in their daily lives, nurses can help normalize the caregiving experience. By accentuating the positive aspects of the experience, nurses can also encourage spouses to maintain hope and optimism.


The knowledge gained from this study, as it relates to the impact of caregiving on stroke survivors, has implications for nursing education. By incorporating the findings from this study into nursing education programs, nurses entering practice will be better prepared to provide assistance to the spousal caregiver during a caregiving experience. Nurses can incorporate the spousal caregiver into the unit of care and can consider the potential impact of caregiving on the caregiver. By anticipating potential problems and stressors, strategies can be implemented to avoid unnecessary caregiver stress.


The findings from this study also have implications for future research. There is a need for future studies to assess spousal caregivers of stroke survivors over a longer period of time. There is also a need to study the effects of the caregiving experience on the health of the spousal caregiver at various stages of the experience. It is important to determine whether there are certain stages during the caregiving experience when a spousal caregiver is more vulnerable to the adverse health effects of caregiving. In addition, it is necessary to study whether interventions, such as social support in the form of healthcare professional visits and respite care, help alleviate or decrease adverse effects of caregiving. Continued research on the experience of spousal caregivers of stroke survivors is necessary to gain a deeper understanding of the multidimensional impact of the caregiving experience.



Caregiving for a spousal partner who has suffered a stroke contributes to numerous changes in the lives of the caregivers. This phenomenological study examined the experience of older caregivers as they cared for a spouse who had survived a stroke. Eight participants met the eligibility criteria and participated in the study. Six interrelated themes emerged: experiencing a profound sense of loss, adjusting to a new relationship, taking on new responsibilities, feeling the demands of care, having to depend on the support of others, and maintaining hope and optimism.


Caregiving affected every aspect of the participants' lives in this study. Spousal caregivers were committed to the work of caregiving and felt it was their responsibility to care for their affected partners. Equally evident in the caregivers' accounts was that they needed to be supported in their caregiving work.


Researchers need to continue to examine the experiences of spousal caregivers and to expand the scope of this work to better understand the impact that caregiving has on a spouse. As the population ages, the incidence of spousal caregiving will increase as will chronic health conditions such as stroke.



The author wishes to thank thesis committee members, Dr. Shirley Solberg, Doreen Dawe, MN RN, and Carla Wells, MN RN, for their contributions to the research.




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