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Journal of Neuroscience Nursing:
doi: 10.1097/JNN.0b013e31823ae4a1
Article

The Long-Term Experience of Family Life After Stroke

Kitzmüller, Gabriele; Asplund, Kenneth; Häggström, Terttu

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Author Information

Questions or comments about this article may be directed to Gabriele Kitzmüller, MA RN LGN CNS, at gk@hin.no. She is an assistant professor of nursing in the Department of Health and Society, Narvik University College, Narvik, Norway, and a PhD student in the Department of Health and Care Sciences, Faculty of Health Sciences, University of Tromsø, Tromsø, Norway.

Kenneth Asplund, PhD MD RN, is a professor in the Department of Health Science, Mid Sweden University, Sundswall, Sweden, and in the Department of Health and Care Sciences, Faculty of Health Sciences, University of Tromsø, Tromsø, Norway.

Terttu Häggström, PhD RN PHN NT, is an associate professor of nursing in the Department of Health and Society, Narvik University College, Narvik, Norway.

Questions or comments about this article may be directed to Gabriele Kitzmüller, MA RN LGN CNS, at gk@hin.no. She is an assistant professor of nursing in the Department of Health and Society, Narvik University College, Narvik, Norway.

The authors declare no conflicts of interest.

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Abstract

ABSTRACT: Stroke is a life-threatening and disabling illness known to have a significant impact on families. The purpose of this study was to illuminate the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital and parent–child relationships. Thirty-seven narrative interviews were conducted with stroke survivors and their spouses and adult children who were minors at onset of the illness. A qualitative approach inspired by Gadamer’s hermeneutic and van Manen’s phenomenological understanding of lived experience was used. The analysis revealed four themes: the family as a lifebuoy, absent presence, broken foundations, and finding a new marital path. Lack of communication and altered roles and relationships endangered marital equilibrium and parent–child relationships after stroke. This study highlighted the need for professional family support as families were unprepared for the life changes that occurred. Nurses and other healthcare workers should examine family relationships and communication patterns and view the family as a unit composed of unique persons with different needs. Further research on the experiences of stroke survivors’ children seems urgent.

Stroke is a life-threatening and disabling illness with a long-term illness trajectory (Kirkevold, 2002). Stroke exerts a significant emotional, social, and economic impact on family life (Palmer & Glass, 2003). Stroke can be described as a family illness, because life changes that occur after a stroke affect all family members (Visser-Meily, Post, Gorter, Berlekom, & Lindeman, 2006). Both stroke survivors and spouses experience role changes, an altered perception of self and a loss of social activities, and these changes influence both personal identity and the dynamics of spousal relationships (DeLaune & Brown, 2001; Thompson & Ryan, 2009). One-third of stroke survivors experience changes in family relationships, with family functions becoming stressful and conflicts between spouses becoming more frequent (Young, Murray, & Forster, 2003). Family members of aphasic stroke survivors feel loneliness and isolation and experience significantly more severe social changes in comparison with other stroke families (Herrmann, Britz, Bartels, & Wallesch, 1995; Nätterlund, 2010).

Family dysfunction may arise when there is a discrepancy between the stroke survivor’s abilities and family expectations (Evans, Hendricks, Haselkorn, Bishop, & Baldwin, 1992). Stroke couples experience physical changes, depression, and worries about the future (Robinson-Smith & Mahoney, 1995). Family members’ affinities toward each other become fragile, and the loss of activities represents a loss of social networks for the family (Hafsteinsdottir & Grypdonck, 1997; Lindquist & Dahlberg, 2002). A positive marital relationship or other consoling relationships within the family are found to enhance long-term rehabilitation outcomes and quality of life (Palmer & Glass, 2003; Pilkington, 1999).

Visser-Meily et al. (2005) found that 54% of 82 children (aged 4–18 years) of stroke survivors had behavior problems after a parent’s admission to a rehabilitation center. The rate improved to 29% after a year. The children’s adjustment was related to the depression and strain perceived by the caregiving spouse and their perception of the marital relationship. Adult children of stroke survivors living away from their parents also experience life-changing transitions in family relationships (Fraser, 1999; Secrest, 2000).

Despite the well-documented need for family support, this need is poorly met in healthcare systems (Buschenfeld, Morris, & Lockwood, 2009; Mackenzie et al., 2007; Ski & O’Connell, 2007). A literature review revealed no scientific reports, exploring both marital relationships and parent–child relationships in stroke families. Therefore, the purpose of this study is to illuminate the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital and parent–child relationships.

In this study, “family” refers to the nuclear family living together (mother and father or single parent and children), whereas “extended family” refers to family members related to the members of the nuclear family (e.g., the siblings or parents of the mother or father). The study is guided by the assumption that a life-threatening and disabling illness in one family member will influence the lives of all family members, because their lives are linked together in the family unit (Elder in Chibucos, Leite, & Weis, 2005).

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Methods

A qualitative approach was used to illuminate the long-term experience of family life after stroke. A phenomenological and hermeneutical approach guided the analyses of the transcribed interviews, as these methods are well suited for family research (Chesla, 1995; Plager, 1994). The interviews were guided by a narrative approach to gain insight into the participants’ lived experience (Sandelowski, 1991). The use of narratives allowed all family members to portray themselves through the actions and the relationships that they discuss (cf. Chesla, 1995).

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Participants and Procedure

Forty participants who were ethnic Norwegians and lived in rural and urban areas in six counties of Norway were included (Table 1, demographic characteristics). Twenty-two were stroke survivors, sixteen were spouses, and two were stroke survivors’ adult children who were minors at onset. All stroke survivors reported some degree of cognitive and emotional impairment, for example, loss of memory, reduced ability to concentrate and orientate, and emotional instability. Eleven stroke survivors had aphasia, and 20had paresis. Eight depended on sticks, and three depended on a wheel chair when moving outdoors. Stroke survivors were recruited by the local leaders of the Norwegian Stroke and Aphasia organizations and by local leaders of home care nursing. The leaders were asked to undertake purposive sampling (cf. Gobo, 2007) of the stroke survivors using the following criteria: a minimum of 3 years after a disability-causing stroke, age over 16, living at home, sufficient ability to communicate through speech, and sufficient cognitive ability to give informed consent. Spouses and children were recruited by the stroke survivors using the same criteria; furthermore, they had to have lived with the stroke survivors for a minimum of 3 years after onset and the children had to have been younger than 16 years old at onset. Four children matching the criteria were asked to participate, and two agreed. Two women whose husbands were severely disabled were informed about the study by participating friends and asked to be included.

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Interviews

Thirty-seven narrative interviews were conducted by the first author. Sixteen were held individually with stroke survivors, ten individually with coresident spouses, two individually with children of participating parents, and six with both spouses present because the stroke survivor preferred not to be interviewed alone. After the interviews with these couples were completed, three spouses were interviewed individually. With one exception, the interviews were conducted in the participants’ homes at a time that was convenient for them. Each interview lasted from 60 to210 minutes; the interviews were audio recorded and transcribed verbatim by the first author. Observations about disabilities, the home setting, facial expressions, emotions, gestures, and actions were noted and taken into consideration during data analyses. All interviews were initiated by asking the following questions: How would you describe your life and your family’s life before the stroke? How did the stroke influence your life and your family’s life? Throughout the interview, follow-up questions were posed to encourage more elaborate and nuanced descriptions.

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Data Analysis

The analysis was guided by Gadamer’s (1960/1990) hermeneutical principles, by suggestions for hermeneutical analysis described by Fleming, Gaidys, and Robb (2003), and van Manen’s (1997b) approach to phenomenological themes. According to van Manen (1997b), the aim of phenomenology is to transform lived experience into rich descriptions of its essence. Methodology should not be considered a correct method to follow, but rather a creative approach to understanding, on the basis of good judgment and responsible principles (van Manen, 1997a). According to Gadamer, understanding and interpretation are processes of the life world that cannot be captured by scientific methods alone but are dependent on the researchers’ creativity and hermeneutical sense of problematic and questionable issues in research (Gadamer, 1995). In Gadamer’s hermeneutics, the importance of language, questioning, experience,openness, and reflection on preunderstandings is emphasized (Binding & Tapp, 2008; Fleming et al., 2003; Gadamer, 1960/1990).

Initially, all interviews were read several times to gain an understanding of the text as a whole. A summary of each interview was written and used to compare the researchers’ preunderstanding to the understanding of the text as a whole (Geanellos, 1998). In the next step, the entire text from all the interviews was screened for expressions of lived experiences of family life after stroke (Fleming et al., 2003). These expressions were condensed and clustered into four themes. Finally, the themes were compared with the understanding of the text as a whole, with contextual notes included, to ensure trustworthiness. Suitable quotes were selected to illustrate different experiences that illuminated the phenomenon “family life after stroke.”

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Ethical Considerations

Ethical approval was granted by the North Norwegian Regional Research Ethics Committee. Written informed consent was obtained from the participants prior to their inclusion. Participants were assured of their confidentiality and their right to withdraw from the study. All information in the interviews that could potentially identify participants was changed in the transcribed texts. The researcher considered the participants vulnerable individuals who had endured difficult experiences. The participants were informed about places where they could get support after the interview, if needed. The participants were also encouraged to stop the interview if they wanted to, but none of them did. Capturing illness experiences from participants with impaired communication requires patience and a reconsideration of ethical strategies (Philpin, Jordan, & Warring, 2005). The interviewer was able to meet these demands because of her experience in communication with people living with aphasia.

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Findings

The analysis revealed four themes that captured the long-term experience of family life after stroke. The first theme, “the family as a lifebuoy,” illuminated the essentiality of family support. The second theme, “absent presence,” shed light on the parent–child relationship. The third theme, “broken foundations,” illuminated marital challenges after stroke. Finally, the fourth theme, “finding a new marital path,” illustrated how couples dealt with changes after stroke.

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The Family as a Lifebuoy

Supportive family relationships were seen as essential for stroke survivors’ survival and recovery. During the acute stage, it was important for spouses to ensure that stroke survivors received optimal treatment and care. Such involvement could result in transfer to more specialized hospitals or rehabilitation units. Later, spouses tried to look for new treatments or remedies to improve the stroke survivors’ functional abilities. Often, they succeeded despite the stroke survivors’ poor prognosis.

I would not have managed without my wife… She has pushed me all the time…Without her, I would have stayed in the wheelchair and lived in a nursing home… [Harald, stroke survivor].

Both stroke survivors and their spouses wanted to be reunified in their own homes as soon as possible after the stroke. Family relationships were essential for boosting the survivors’ will to live; for example, being a mother of a small child could restore a will to live despite severe poststroke depression. The family’s encouragement and emotional support helped stroke survivors to carry on.

It meant a lot to me that I had a big family…as long as you have a family, they will always stand up for you…and you must keep going [Eva, stroke survivor].

Encouraging spouses helped their ill spouses achieve self-confidence, motivation, and independence. Stroke survivors expressed gratitude for having been pushed forward by their families. The dreams that stroke survivors recalled from comatose periods can be seen as metaphors for how family members are perceived as rescuers.

I perceived that my son was my rescuer in the helicopter; he saved me several times…I was meant to be together with this little family of mine [Henny, stroke survivor].

Spouses also provided tremendous practical support during both the acute stage and the subsequent years after the stroke. They had to act as nurses and physical therapists while fighting for their disabled spouses’ rights and taking over roles and responsibilities in a supportive, yet determined manner. Spouses were convinced that their actions improved the rehabilitation process but emphasized that they, too, needed emotional and practical support. Support from members of the extended family was crucial, as spouses commonly experienced poor help from nurses or other healthcare workers. Practical and emotional support allowed spouses to maintain a work life and to keep up with their caregiving obligations during the acute stage.

We got a lot of help from my wife’s sister. She moved in and lived with us during this time. Her help meant a lot [Torgrim, spouse].

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Absent Presence

Both the stroke survivor and the healthy parent had to be away from home during the acute and sometimes critical stage and, later, had to concentrate on a demanding rehabilitation process. Despite major changes in the family members’ daily lives and the difficulties of fulfilling their parenting obligations, couples reported that their children had not experienced much harm, as they had received good care from the healthy parent and members of the extended family. Parents explained that they had been most concerned about their own situation and did not remember their children’s reactions during the acute stage. They mentioned that their adolescents had left home early and moved far away. With one exception, parents did not see a connection between their children’s early departure and the stroke event.

This is not only about me; it [the stroke] was destructive for my children… My daughter moved to another county when she was only 16. I think she wanted to be far away…I think it was best for her [Rita, stroke survivor].

Single mothers felt that they had abandoned their children when they were left to the care of extended family members for the first time after the stroke. The mothers attempted to compensate for such absences with exaggerated efforts to be especially good parents after the stroke. Behavioral problems, difficulties with concentration, and learning deficits among their children were noticed by these single mothers.

My son is a little spoiled, but my only job now is to be a good mother and that has to be done well…of course I felt that I had abandoned him [he was 8 years old then]…he needed much support…but you cannot choose these things…therefore I wish to do especially much for him now. I have the feeling that I have been away from his life when he needed me… [Harriet, stroke survivor].

All stroke survivors with minor children at onset were women. They talked about shortcomings in their parenting as they could not meet their children’s needs. Their husbands had to take on parenting alone, and this change was difficult because they were not familiar with these new roles. These stroke survivors experienced mental pain, self-reproach, and sadness when they suddenly realized that their children had turned away from them.

I cannot describe how it felt…it was a shame, a horrible shame…I became even more depressed [Line, stroke survivor, about her child turning away from her].

The sudden and shocking onset of the stroke created a fear in the children that the parent would die or that something bad could happen to them too. The children also experienced other frightening situations, such as being alone with a parent with epileptic seizures or finding a parent after a suicide attempt. According to the parents, the children had shown psychosomatic reactions, but parents did not connect these reactions to the stroke event.

He [8 years old at onset] got troubled with his stomach, he had much pain and we visited the doctor and it kept going. At the end, we were sent to the hospital…they did not find anything [Torgrim, father and spouse].

The narrative of a participating child revealed feelings of loneliness, loss of freedom, lack of support, and the burdensome responsibilities of caring for a household and a minor sibling. The struggle to fulfill the sometimes self-imposed duties and being unable to do so caused the child to lose self-confidence. To keep the family together, especially when there were conflicts between the parents, the child tried to help the ill parent to relieve the healthy parent. Strong emotions were displayed during the interviews with adult children.

I felt that my mother and my father were absent…[cries] I asked my little sister to sleep in my bed and that lasted for a long time; I wanted to have someone in my room together with me… [Liv, minor at onset].

I remember very well my mother not being there and my sister taking the responsibility; it was a lot of responsibility…she took me to kindergarten on her bicycle [Elin, minor at onset].

The parents and one of the children reported health problems during adolescence that disappeared after they left home. The illness was seen as a possible consequence of the childhood experience. Tense relationships between parents and children were noted especially when the child needed to take on burdensome duties. One child explained her decision to leave home early as a means to escape from responsibilities.

I only wanted to get away from home. I wanted to be alone. I moved out immediately after I finished school. I was tired of all the responsibilities…I stayed away for eight years and I thought I would never move back to my home city. In this time, I felt that I had a very bad relationship with my parents…now it is different [Liv, minor at onset].

Overwhelming responsibilities early in life seemed to result in a preference for managing things alone or for performing perfectly. Parents did not make a point of these early responsibilities but admitted that there had been little talk about the illness within the family. Children observed that their parents were reluctant to talk, and so they kept silent. Nevertheless, the experiences sometimes had positive outcomes for the child, such as a greater awareness of the importance of health and improved coping strategies. A closer relationship with the ill parent was reported by the child when there was no need to take on caring duties.

Couples could not answer the question about how the stroke had affected their children’s lives, but they did reveal that they had noticed their children’s reluctance to talk about the ill parent with others. Left with no professional support, one child talked about her tremendous need to find someone to share the experience with. Finally, she called volunteer telephone services.

We weren’t seen…I had a need for someone to talk to, get information about the things that had happened to us, somebody who could visit us and talk to the whole family, how we could handle problems, whom we could contact, family counseling, maybe… [Liv, minor at onset].

According to parents who had adult children living away from home, these children had difficulties accepting that the ill parent was not the same as before the stroke. They seemed to deny the situation, especially when they had not been engaged in all of the daily struggles and when they expected things to be as usual when they came home. Healthy parents missed their children’s support and felt disappointed and abandoned. Nevertheless, they mostly excused their children for having lives of their own.

The kids are not realistic, they deny the situation. I have to tell them: your father is not the same as before [Gitte, spouse].

Aphasia deepened the gap between children and their disabled parent and made it difficult to maintain contact with children who lived in other parts of the country. Despite not being able to say a word, some parents called their children frequently to hear their voices and their news. Parents with severe aphasia felt disappointed when their children reacted with anger or withdrawal. Some parents realized that aphasia was stigmatizing for their children, and they failed to obtain professional support for the children.

It is very hard for the children in the family…suddenly their stepfather turned crazy…they should do something for them too…information, counseling… [Gunnar, stroke survivor].

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Broken Foundations

The couples were not prepared to face the changes in family life after stroke. Healthcare workers had not made efforts to assist in that matter. Stroke survivors could no longer fulfill their roles or meet their spouses’ expectations. Role changes and altered relationships made the healthy spouses face responsibilities with which they were unfamiliar with. These role changes often caused fear and insecurity or interfered with work obligations. Spouses had to take sick leaves, reduce work time, or give up work altogether, and these changes reduced the family’s total income.

I had a husband who managed everything before and all at once he did not…I had to take on the responsibility for our finances [Siv, spouse].

If it had not been for our little son, it would have been easier. It felt like an overwhelming responsibility…just to find out how to dress him… it was my wife who had the main responsibility for him and suddenly she suffered a stroke…[Torgrim, spouse].

Living with a spouse with cognitive impairment and an altered personality influenced marital relationships. Sometimes, the spouse perceived the disabled stroke survivor as a stranger. Childish, aggressive, controlling, and jealous behavior endangered the mutuality in marital relationships.

Something has been damaged with the stroke; he doesn’t understand as before and he cannot do things as he did… he doesn’t see his own situation like it is… the worst was that his personality was changed… He should not get angry over trifles and let others suffer…There have been many conflicts [Birgit, spouse].

Some male stroke survivors felt that their spouses threatened to abandon them if they did not change their behavior. They admitted that they had not been easy to live with because they became bad-tempered or disengaged after the stroke. Disagreement also arose between couples about important decisions that had to be made.

I took over running the farm on my own…today I cannot understand what I was doing…He understood his situation and wanted to sell…I wanted to build up…[Gitte, spouse].

None of these issues were discussed during the couple interviews, but they were disclosed in subsequent individual interviews afterwards, during which all participants showed more emotions through various types of body language.

Living with a depressive spouse was trying. Healthy spouses had to push and pull as well as seek treatment. Serious and long-lasting depression with suicidal behavior in stroke survivors was an additional burden that affected healthy spouses’ mental health.

It was bad enough when she suffered the stroke, but when she tried to commit suicide…I felt like I had built a house and someone had snatched the foundation. [Torgrim, spouse].

Couples considered aphasia to be the worst disability after a stroke and regretted that aphasia got so little attention in healthcare services. Not being able to communicate caused grief and anger. All contacts with the outside world had to be made by healthy spouses who also had to defend their aphasic spouses’ rights. Some spouses felt that their aphasic partners were overlooked or were stigmatized by other people. They tried to educate others about aphasia and encouraged them to talk to their spouses. Aphasia was also considered to be a threat to stroke survivors’ intelligence as they were no longer able to share their thoughts.

The worst thing is that I cannot have a conversation and discuss things with him… it is difficult so we turn on the TV…Aphasia is the worst thing!…His intelligence is not as before; it is in his head but it doesn’t show, and if it does it comes in a strange way; I’m sure he has lots of thoughts, but we cannot take part in it, that’s how it is [Siv, spouse].

Stroke survivors with severe aphasia had to rely on their spouses as interpreters, although their interpretations were not always correct. It was obvious during the interviews with couples that aphasic stroke survivors wanted to talk on their own behalf but had difficulties entering the conversation. Sighs and groans were uttered when the spouse dominated the conversation. Spouses of stroke survivors who had completely lost their speech abilities were forced to make guesses that caused misunderstandings and conflicts.

“There is a lot of guessing…but I cannot just fake that I understand the man I share 24 hours a day with, I can’t…There are lots of misunderstandings…He is speechless but no one can imagine how animated our fights are [Mathilde, spouse].

Aphasia interfered with couples’ social activities too. Friends and acquaintances disappeared, and the aphasic spouses withdrew from social life. Thus, the nuclear family lost important connections with its social network. This change made spouses struggle even harder to maintain a network by trying to compensate for their aphasic spouses’ withdrawal.

He cannot start a conversation; sometimes, when we have visitors, he leaves the room…He refuses to visit our friends…So it is he who withdraws, not them [Charlotte, spouse].

Spouses made efforts to increase their disabled partner’s independence. Male spouses encouraged their partners to participate in demanding activities. Some female spouses were overprotective and limited their husband’s activities when they considered the activity to be dangerous. All activities in the couples’ lives had to be planned and prepared for and did not allow for spontaneity, a missing feature that was emphasized as a considerable loss.

Spontaneity is gone…you cannot make spontaneous decisions anymore because everything has to be planned and arranged carefully…I miss it a lot…Life has become a routine… [Renate, spouse].

With few exceptions, caregiving around the clock was exhausting. For the spouses, it was difficult to attend to their own interests, as many of their partners were dependent on them. Stroke survivors wished to be a part of the spouses’ life, a wish that at times was overwhelming and forced the spouse to seek an escape.

You are not a caregiver sometimes but your whole life becomes caregiving. If I stay in another room for too long he calls on me…Sometimes I have to leave the house. I cannot manage to stay there… [Matilde, spouse].

Stroke survivors who continued to work found that their job claimed all of their energy, and they became too exhausted to fulfill their spouses’ expectations. Stroke survivors were aware that the situation was burdensome for their spouses and that it impacted their freedom and sometimes even their health. Torelieve their spouses’ burdens, the stroke survivors gave up leisure activities or rehabilitation efforts that demanded their spouses’ help. Feelings of guilt and a troubled conscience were common among stroke survivors. They felt desperate about being unable to contribute to the family’s well-being because of the overwhelming role changes they faced, including ending their work life, not being able to do housework and impaired parenting.

He was forced to stay at home with me…He could not travel and attend seminars…He could not even go out skiing…I had a very bad conscience because I could do so little [Henny, stroke survivor].

Stroke survivors struggled for independence in their marriage. Managing things alone became important. At the same time, it was essential for them to get the help they asked for. Being dependent upon their spouse caused irritation and anger and left the stroke survivors with diminished self-confidence.

Maybe I’m so irritated because of all the things I cannot do and so it causes someone to suffer [Karl, stroke survivor talking about his wife].

Struggles against dependency often led to considerable changes in the family’s way of life. For two male stroke survivors, independence was of such importance that they decided to live on their own, although they did not separate completely from their wives. The decision was also made to save their wives from obligations. The partners continued to visit each other, share meals, and spend holidays together.

I told my wife: “I’m going to move to another county and try to manage on my own…give me two years”… I supposed if I had chosen to live with her, I would have made her do things for me…now living on my own I cannot depend on her… [Gunnar, stroke survivor].

Short-term relationships (less than 5 years) fell apart within the first year after the stroke. None of these participants had been married. Disability after stroke was seen as the main cause of separation as these stroke survivors did not want to limit their partners’ lives. At times, the healthy partner could not accept the disabilities and role changes. Living with an unsupportive and criticizing partner caused disappointment and grief. Being left alone when the partner’s help was most needed worsened the suffering.

I felt abandoned… He visited me only once in the hospital. I felt that he had let me down… [cries] [Gerd, stroke survivor].

Also spouses felt they had been left alone grieving without healthcare workers’ support. They reported unmet needs in being informed about how to deal with their ill partner’s condition.

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Finding a New Marital Path

Couples who decided to continue their lives together had to find a common path into the future. Together, they had to rearrange their lives and adjust to the changes that had broken their foundation. Most couples had been married for many years before the onset of stroke (Table 1). They knew each other well and were able to meet each others’ needs. The relationship was strengthened as they grieved the losses and searched for information together. Exercising, as part of the rehabilitation process, became the most important and time-consuming activity in the couples’ lives. Both stroke survivors and spouses had engaged in these activities with enthusiasm. As most couples continuously experienced progress, they continued exercising for a long time.

After the stroke, couples spent more time together as working hours were reduced or terminated. Time became available for new activities. Couples who managed to find new leisure activities gained new acquaintances and friends whose support made other, more demanding activities possible. Outgoing couples kept more of their important networks than did less outgoing couples. Visiting peer groups was a prioritized activity. Learning about the illness and its consequences and gaining support from people with similar experiences helped these couples adapt to their new life situation. To maintain communication, couples dealing with aphasia developed new communication strategies using body language, facial expressions and demonstrative actions.

The other day he looked to the other side of the beach and laughed. I told him: “I know what you are thinking about. I can read your mind”…. We have been married 51 years you know [Charlotte, spouse of a stroke survivor with severe aphasia].

After some time, the changes in marital life became routine. Couples did not reflect much on the past; rather, they wanted to look forward. Love and attachment gave them strength to continue their lives together. Their strategy was to focus on opportunities rather than on limitations. Humor often seemed to be used as a means to deal with the difficulties.

Most couples were aware of the necessary alterations after the stroke. Stories about other stroke couples’ divorces from the peer groups were reflected upon and made them work even harder on their own relationships. With few exceptions, the participants expressed that they had a good life and found that their marital life improved, despite the strain. Being able to communicate openly strengthened the relationship. The duration and quality of the marriage seemed to be an important factor in how the couples managed. Being able to solve problems together was seen as a shared victory.

We stay closer to each other. Now we talk more about our problems, we are more open towards each other. We have stuck together all these 30 years [Eva, stroke survivor].

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Discussion

The purpose of this study was to illuminate stroke survivors’, spouses and children’s long-term experience of family life after stroke, particularly regarding marital and parent–child relationships. The influence of communication on family function was one of the main findings and was evident in all four of the themes.

Lack of communication because of aphasia caused emotional problems, misunderstandings, and feelings of loneliness within the couples. Marital dissatisfaction and negative attitudes in couples with aphasia have been shown in several studies (Nätterlund, 2010). Loss of a partner with whom to converse made it even more difficult for the healthy spouse to adjust to altered roles and relationships. The aphasic stroke survivors had great difficulties conveying their feelings and thoughts about their disabilities. It is known that insufficient communication increases the family’s burden, and stroke survivors with aphasia and their spouses are more vulnerable to depression, which may further endanger marital satisfaction (Thomas & Lincoln, 2006).

Aphasic stroke survivors showed displeasure when their spouses spoke for them and they could not speak for themselves. Not being allowed to participate in conversation or other overprotective actions contribute to stroke survivors’ feelings of incompetence (Croteau & Le Dorze, 2006). Self-disclosure is an important condition for marital satisfaction (Bograd & Spilka, 1996) and is nearly thwarted by serious aphasia. Nevertheless, couples in long-lasting relationships managed to maintain communication, partly nonverbally, which allowed them to work on their relationship and stay connected. In these couples, humor was used to deal with a challenging life situation.

Although aphasia was seen as the worst disability after stroke, couples not affected by aphasia also experienced lack of communication. Herrmann and Wallesch (1989) report that permanent lack of family communication, even more than language impairment, relates to changes in the family’s structure. As communication can be considered as the heart of expressive family processes, decreased communication within the family makes problem solving and coping difficult (Day, 2010).

Participants seemed to suppress emotions during the couple interviews but expressed their feelings spontaneously in individual interviews. This reflected an emotional shielding between spouses. Parents admitted that they had hardly communicated about the event with their children. They thought that their children did not want to talk about the illness, a belief that was contradicted by one participant who was a child at the onset of her parent’s stroke. Korneluk and Lee (1998) suggest that children may conceal their own distress from parents in an effort to spare them from further distress. Emotional shielding is often seen in adults when a family is confronted with illness (Lawrence, 2010; Young et al., 2003). In this way, the parent models shielding behavior for the child. Considering the findings of Lewis et al. in Korneluk and Lee (1998), silence is not a desirable way to deal with family illness. Rather, these authors indicate that frequent feedback, reflection, and discussion are associated with better communication between children and parents and enhance marital adjustment between the parents involved.

In the theme of “family as a lifebuoy,” the findings were interpreted into metaphorical language to illuminate the great value of supportive family relations when a member of the nuclear family suffers a stroke. Such relationships could even support the stroke survivor’s will to live. These findings are in accordance with Pilkington’s (1999) report that supportive family relationships provide relaxation and security and give the stroke survivor incentives to continue living. Effective family involvement and emotional support is associated with functional improvement and decreased stress among stroke survivors (Pierce et al., 2004). Family support from members of the extended family was crucial for spouses in this study, especially as the support from healthcare workers was experienced to be poor.

Stroke obviously altered the relationship between children and parents. Although the parents were present after the acute phase of illness, an absence of awareness seemed to color parent–child relationships, and problems remained hidden. There was a discrepancy between couples’ and children’s perceptions of the stroke’s impact on childhood. Single mothers were more aware of not having been able to meet their children’s needs and tried to compensate for this failure afterwards. Korneluk and Lee (1998), who investigated 28 studies dealing with children’s adjustment to parental illness, state that children show increased fear or depression, although their parents or other observers do not perceive these alterations. This contradiction is explained by Steck (in Metzing & Schnepp, 2007), who suggests that children who have to deal with parental illness often suppress feelings like grief and anger, which can only be disclosed in projective tests.

It seemed that parents were overwhelmed by the life-changing illness and were unable to focus adequately on their children’s needs. Their children had to cope with the threat of losing their parent and a decreased parental availability. Furthermore, the findings indicated that when a child takes on a greater amount of responsibility, the parent–child relationship may be harmed. A closer relationship with the ill parent was observed when the child did not have to take on adult roles. Results in other studies show that taking on considerable caregiving duties has implications for children’s physical and psychosocial development and that their educational prospects, friendships, and social activities may suffer (Becker, Aldridge, & Dearden, 1998). On the other hand, early caring responsibilities can also have positive outcomes, such as positive self-esteem, increased maturity and positive parent–child relationships (Le Dorze, Tremblay, & Croteau, 2009).

The findings revealed psychosomatic complaints, school problems, and difficulties with concentration among the children, all of whom left home early in adolescence. Rolland (2004) suggests that children who are forced to fill adults’ roles can develop such problems. Adolescence is a developmental stage during which children claim more independence and a looser connection within their family relationships (Rolland, 2004). However, chronic illness and disability demand stronger cohesion within the family, which can interfere with the demands of the adolescent stage (Cole & Reiss, 1993).

Stroke survivors with aphasia felt that their children were turning away from them. Aphasia and cognitive disturbances after a stroke may challenge children’s adjustment more because altered behavior or loss of speech can lead to stigma and an altered family identity. Illnesses that affect the brain have a particularly significant impact on families because they interfere with family development (Cole & Reiss, 1993).

The interpreted theme of “broken foundations” revealed that stroke, with its unexpected onset, altered the family’s life course permanently. The findings indicate that to perceive the family as a lifebuoy, long-lasting relationships with a strong foundation must exist before the stroke attack. Short-term relationships, mainly between young unmarried couples, fell apart in the aftermath of a stroke. Younger cohorts of stroke couples seem to experience a greater level of strain and a higher incidence of divorce than older ones (Teasell, McRae, & Finestone, 2000). Family life-course developmental theory may explain these findings with the idea that family stages and events are experienced as on-time or off-time, depending on whether the event or stage is expected (White & Klein, 2008). A disabling illness will be experienced as off-time in a young family, whereas it might be seen as on-time in an older couple’s life (Chibucos et al., 2005). Furthermore, illness influences the development of the affected family members in different ways, depending on their age at onset, the core commitments of the affected person and each member’s life at that time and the stage of the family’s life cycle (Rolland, 2004).

Cognitive disorders and changes in the stroke survivor’s mood and abilities greatly impacted the burden of care and the stress related to role changes. This increased load caused dissatisfaction among healthy spouses and had a seemingly greater impact on marital life than did physical disability. On their part, stroke survivors felt guilt and shame about their inability to fulfill their former family roles and expectations and tried to limit their spouses’ burdens by reducing their own activities. It is known that cognitive disorders and mood changes have a negative impact on caregivers’ quality of life and can cause caregiver depression and negative attitudes toward the ill spouse (Clark et al., 2004; White, Poissant, Cote-LeBlanc, & Wood-Dauphinee, 2006).

Independence was important for stroke survivors but not all spouses supported this endeavor. Independence is positively associated with stroke survivors’ quality of life (Bays, 2001); therefore, spouses should be prepared to facilitate this rehabilitation target.

Couples had to face new and unfamiliar roles that were distressing. Large-scale role changes after stroke may endanger the family’s identity. Stress and conflicts can increase, and changes in the entire structure and function of the family can occur (Greenwood, Mackenzie, Wilson, & Cloud, 2009; Patterson & Garwick, 1998).

Couples who were working on “finding a new path together” did so through cooperation. It was important for them to draw on resources and find new activities that could be performed together. They accepted the existing limitations and changes caused by the stroke. Strong and long-lasting marital relationships made these adaptations possible. The positive influence of family cohesion and affection on poststroke marital relationships is documented by Pierce et al. (2004) and Pilkington (1999). Corbin and Strauss (1984) emphasize that couples should work through the illness together by talking, compromising, venting feelings, negotiating tasks and expressing gratitude; such behaviors seem crucial to keep the couple together.

Findings in this study showed that healthcare workers did not adequately provide the family with ways to pull together despite the challenges. Similar results are reported in other stroke studies (Rodgers, Bond, & Curless, 2001; Smith, Forster, & Young, 2009).

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Methodological Considerations

The hermeneutic circle can only be entered properly when preunderstanding is used in a productive way and is not an unconscious prejudice that may hinder new insights (Gadamer, 1960/1990, p. 271). Therefore, prejudices were provoked in discussions between the authors. The authors’ preunderstandings have contributed to the study in several ways. They derived from a rich experience in the practice of family nursing in different clinical settings, experience in spousal stroke care, and experience in phenomenological and hermeneutical research.

To elucidate the phenomenon thoroughly, participants from different areas and of different ages, gender, and education levels living in different family settings were recruited. Nevertheless, the sample has its limitations regarding ethnicity and cultural background, because all participants are ethnic Norwegians. Our decision to perform couple interviews first and individual interviews afterwards with only a few couples may have limited the insights gained. The difficulties with including children in the study also represented a limitation. The strong emotions the children showed during the interviews may explain why it was difficult to recruit adult children of stroke survivors who were minors at onset. Nevertheless, the theme “absent presence” did not merely emerge from the analysis of the children’s interviews but also from the analysis of the interviews with six parents whose children were minors at onset and with 26 parents with grown children at onset (Table 1).

The first interview was used under supervision as a pilot interview to refine follow-up questions that could illuminate the phenomenon. Repetitive and comparative procedures between the parts and the whole of the texts during the analysis were used to strengthen credibility. The findings and the interpretations were discussed within the research team and with other research colleagues. Information about the participants was provided to reveal their life context and to allow readers to consider transferability. The research team made an effort to find probable and plausible interpretations that were guided by supplemental data, such as nonverbal expressions and contextual data. The authors have used a reflective and sensitive attitude in all phases of the research process to remain open to new insights.

Using phenomenology and hermeneutics allows both the researcher and the subjects to influence the research process, and the results may be interpreted in different ways. Nevertheless, a rich presentation of characteristic quotes should allow readers to make their own judgments.

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Implications for Nursing Practice

The changes in family life after stroke were multifarious and perceived differently by stroke survivors, spouses, and children. As stroke survivors’ families must face various challenges through different developmental stages, family life-course developmental theory would be useful in enhancing nurses’ understanding. The findings and interpretation indicate that there is a need for long-term professional support after stroke. This need is underlined by the strong expressions of emotion shown in the interviews many years after stroke onset and by the verbal requests for support expressed by healthy spouses and children. As the family is perceived as a lifebuoy, nurses should prepare for and encourage family members to spend as much time together as possible, starting in the acute stage. Members of the extended family should be included; they can provide important support for the nuclear family as shown in the study. Nurses especially skilled in supporting families with children facing crisis should be included in stroke teams in hospitals, rehabilitation units, and home care settings during the stroke trajectory. Nurses should pay special attention to families stricken by aphasia and cooperate with speech therapists to help these families communicate. Access to peer groups is an important resource for family support, and nurses should provide information about such groups.

Family relationships should be examined; as families in child-rearing stages, single parents and couples in short-term or nonsupportive relationships seem to be especially vulnerable. Depression, mood changes, fatigue, and communication disorders put great strain on family relationships, and affected families should receive special attention. Helping families to communicate openly, express feelings, and share burdens is an important task. Through educational and emotional support, healthcare workers should help the family reach a common understanding of the event and its demands on family life. Sensitive and ongoing relationships with nurses in home care settings should provide long-term support for stroke families and pay special attention to children’s needs. Continuity may prepare the ground for trusting and caring attitudes that allow the family to share problems and strategies. All of these interventions cannot be performed universally; rather, individualized attention should be given to each member of the nuclear family. The family should be seen as a unit composed of unique persons with different needs, on the basis of their age, personality, health, social situation, and roles and relationships within the family.

Stroke survivors’ children should receive special consideration. Parents need advice to relieve their children from emotional distress and burdensome responsibilities. Healthcare workers should help parents perceive their children’s needs and intervene if there is a lack of communication or a need for counseling.

Further research is needed to illuminate family life during the acute stage after a stroke event, and a more comprehensive study of stroke survivors’ children seems urgent.

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Summary

This study illuminated the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital relationships and parent–child relationships. The interview texts revealed that the poor support they felt they received from healthcare workers failed to prepare them for changes in their family life. Role changes, emotional shielding, and aphasia hindered communication and understanding within the family. Altered relationships because of cognitive impairment and altered personality and feelings of inadequacy in fulfilling roles endangered family equilibrium. Couples in long-term marital relationships with a strong foundation were best able to deal with the changes. Nurses need to address these issues and should provide much-needed support to all members of the stroke survivor’s nuclear family and close members of the extended family. Further research on the experiences of stroke survivors’ children seems urgent.

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Acknowledgment

The authors would like to thank all the families that contributed to this study.

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