Abstract
The consequences of a brain injury can introduce ripple effects within a family for years after the initial event. In this study, we focused on the experiences of couples negotiating their relationship after stroke. We specifically concentrated on the changes to couples’ interdependence and the relational ramifications of those changes. Interview data from 41 participants (including 20 people who have had a stroke and 21 caregiving partners) suggest that as individuals noticed changes in themselves and their partner, they also noted significant changes within their relationship. As couples encountered their new relational dynamic, they had to manage various struggles including how to provide assistance, how to communicate effectively, and how to reframe their situation. Overall, couples relayed a trajectory of post-stroke life that involved a level of mutual influence that did not seem to exist prior to stroke.
Keywords
Every 40 seconds, someone in the United States has a stroke (Yang et al., 2017). The impact of that event can last for years and may reach far beyond the individual stroke survivor. Economically, the occurrence of stroke costs the United States an estimated US$34 billion annually, a bill that includes medical treatment, long-term care, and lost wages for a growing number of people (Benjamin et al., 2018). Such quantitative assessments are helpful to measure the scope of this chronic illness, but they fail to capture the nuanced individual and relational impacts of living with a long-term disease. Stroke can alter communication (Sullivan et al., 2017), limit mobility (Benjamin et al., 2018), and generate uncertainty (Abendschein, 2020; Donovan-Kicken & Bute, 2008), all of which can introduce a ripple effect of changes, both physical and social, across a person’s life (Bäckström et al., 2010; O’Neill et al., 2008).
There is a substantial amount of research on the physical and cognitive effects of stroke (Hall et al., 2012; Klinke et al., 2015; Kvigne & Kirkevold, 2003), but when a person is discharged from a hospital or rehabilitation center, their informal care is often placed in the hands of a family member (Anderson & Keating, 2017; Bastawrous et al., 2014; Pierce, 2001). During that transition, social and relational deficits may begin to emerge. We know that couples must adapt to new roles (Buschenfeld et al., 2009) and find a new normal, yet we have little information about how the interaction between survivors and caregivers impacts perceptions within the relationship after stroke. In this study, we focus on the individual and dyadic changes that people tie to the occurrence of stroke. We sought to give primacy to the lived experiences of stroke survivors and their caregiving partners by asking them to tell us the story of their relationship and how the stroke impacted each of them. In the following sections, we address the influence that romantic partners have on one another and how stroke may alter that influence.
Individual and Relational Impacts of Stroke
Stroke is a serious medical condition that can lead to life-altering changes. A stroke takes place when there is a loss of oxygenated blood due to a clot (ischemic stroke) or a ruptured vessel (hemorrhagic stroke) within a specific part of the brain (Centers for Disease Control and Prevention [CDC], 2020a). The severity of stroke is related to how long portions of the brain go without oxygen, and the physical aftermath is often associated with location of the injury (left or right hemisphere). The physical and cognitive effects can include difficulty with movement, lapses in memory, and challenges communicating (National Institutes of Health, 2020). Families that experience a stroke often face a potentially long road to recovery.
In addition to the physical consequences, the occurrence of stroke can introduce long-lasting social challenges. Within the family, stroke survivors and informal caregivers struggle to adapt to new roles (Banks & Pearson, 2004; Bastawrous et al., 2014; Northcott et al., 2016) and to manage changes to intimacy as they establish a new equilibrium (Anderson et al., 2017; Gaugler, 2010). Previous research has shown that adjustments to routines and responsibilities may appear superficial but become overwhelming for caregivers and stroke survivors (Blonder et al., 2007). In fact, many individuals who experience stroke express concerns for how their health impacts the larger family unit (Auton et al., 2016). Blonder et al. (2007) found that stroke survivors’ depression was negatively related to their caregiving partners’ marital satisfaction, and Anderson and Keating (2017) reported that both stroke survivors’ and their spouses’ relationship satisfaction declined over time. Yet despite the marital challenges that accompany stroke, marriage is protective of patients’ health (Liu et al., 2018), and receiving meaningful social support following a stroke can improve quality of life and mental health (Northcott et al., 2016). As such, understanding how stroke impacts romantic partnerships is vital.
The experience of stroke is not, it seems, isolated to the individual stroke survivor. In fact, the World Health Organization (WHO) recognized the impact of chronic illness on relational partners by adding the term third-party disability to its lexicon in 2001. Third-party disability relates to health changes in one person brought about by the illness or medical condition of a family member (Scarinci et al., 2009; WHO, 2001). Specific to stroke, research suggests a link between aphasia, one potential outcome of a brain injury that can impact speaking ability and language recognition (National Aphasia Association, 2020), and new physical or mental health challenges experienced by caregivers after a family member’s stroke (Grawburg et al., 2014). For those reasons, we focused on how couples navigated the experience of mutual influence after stroke, an extension of previous studies that favored either the stroke survivor (Thompson & Ryan, 2009) or the family caregiver (Hunt & Smith, 2004). We give specific attention to the dyadic influences of stroke, a notion that adds to Anderson et al.’s (2017) investigation of how married couples adapted to post-stroke life. Those researchers found that relational processes were impacted by stroke but stopped short of addressing relational shifts outside the context of caregiving. They encouraged others to separate “the stress of care tasks, from stress related to changes to structure and functioning of relationships” (p. 396). In our study, we emphasize the influence of adjustments in roles and responsibilities after the stroke, even if changes are short-lived. To better understand those changes, we turn to research on interdependence in romantic relationships as a framework for our investigation.
Interdependence in Romantic Relationships
Individuals in romantic partnerships do not manage health experiences, including stroke, independently. Rather, relationships are inherently interdependent, and the behavior of one person influences the behavior of the other (Arriaga, 2013; Berscheid, 1983; Kelley et al., 1983; Rusbult & Van Lange, 2008). Scholars even contend that mutual influence is “the essence of a relationship” (Berscheid & Ammazzalorso, 2001, p. 309), shaping everyday interactions, cognitions and emotions, relationships, and the self (Agnew et al., 1998; Rusbult et al., 2001). Partners’ level of interdependence is evident in the frequency, diversity, and strength of their interconnections, such that partners who have more frequent, stronger, and more diverse connections to one another are more emotionally invested in the relationship (Berscheid, 1983; Berscheid & Regan, 2016). Dependence on the relationship also reflects the degree to which individual well-being hinges on involvement in the relationship, so naturally those who are more dependent on the partnership are also more committed to it (Agnew et al., 1998). Commitment to a relationship alters the sense of self, such that people see themselves less as individuals and more as part of a collective (Agnew et al., 1998). Interdependence, then, shapes cognition, behavior, and one’s orientation to self and partner.
Though interdependence is relational in nature, it may not be mutual. That is, people’s dependence on one another may be asymmetrical, with one partner leaning more heavily on the other for intimacy, belonging, companionship, emotional involvement, or survival (Rusbult et al., 2001). Unfortunately, unilateral dependence, in which only one partner is dependent on the relationship, can be harmful. Power, for example, is linked with dependence such that the person with greater dependence has less power because they have very little influence on their partner’s quality of life (Rusbult et al., 2001; Rusbult & Van Lange, 2003). Mutuality also enhances functioning in romantic relationships (Weigel, 2010) because people are more motivated to maintain a relationship that is equitable (Rusbult et al., 2001; Yum & Canary, 2009). Health experiences like stroke naturally alter the patterns of dependence in a romantic partnership, making the stroke survivor the more dependent—and thus less powerful—partner.
Interdependence also influences partners’ patterns of interaction. One useful framework for understanding how such changes unfold is Berscheid’s (1983, 1985) emotion-in-relationships (EIR) model, which suggests that individuals make plans in service of their goals, and those plans unfold in chained sequences. When plans are interrupted, people experience negative emotion (Knobloch, 2008). Unfortunately, because people in relationships are interdependent, they may interfere with one another’s plans with some frequency. Thus, Berscheid (1983) contends that our emotional investment in a relationship is the extent to which our plans are vulnerable to interference from another person. The closer a relationship is, the more opportunity there is for emotional disruption (Berscheid, 1985; Birkel, 1991; King & La Valley, 2019). For a relationship to persist, partners have to learn to adjust their plans and activities in a way that protects the other person’s goals rather than constantly interfering with them (Berscheid & Ammazzalorso, 2001). Although Berscheid proposed the EIR model nearly four decades ago, its primary assumptions remain largely unchanged (Reis et al., 2013). Scholars across a variety of relationship disciplines have used the EIR model to inform research on persuasion (Knobloch & Schmelzer, 2008), relational turbulence (Solomon et al., 2016), relational maintenance (Ogolsky et al., 2017), interpersonal conflict (Laurenceau et al., 2005), and other social processes.
For most couples, interference in each other’s sequenced plans is temporary, and partners are able to return to functional patterns of interaction quickly. However, interference does sometimes last long term, which is likely the case for many stroke survivors and their partners as they renegotiate their everyday interactions, roles, and relationship norms over time (Banks & Pearson, 2004), and these circumstances make it more likely that one partner will interfere with the other’s plans (Berscheid, 1985). In such cases, partners may relinquish their original plans or they may develop new skills or resources that allow them to achieve their goals without facilitation from the partner (Berscheid, 1985). Although such efforts may make the relationship more compatible (because chained sequences are uninterrupted), the relationship also becomes less close because interdependence decreases (Berscheid, 1985). Understanding how those patterns of interdependence unfold over time, particularly when interference in plans and goals is chronic, is critical for understanding relationship outcomes (Rusbult & Van Lange, 2003, 2008).
Stroke creates a new environment for couples where they must renegotiate everything, even if just for a short time. Previous research has shown that caregiving partners have altered their career trajectory (O’Connell & Baker, 2004), taken on more responsibility (Banks & Pearson, 2004), and mourned the life they lost due to their partner’s stroke (Saban & Hogan, 2012). In addition, caregiving responsibilities can last for many years, so the strain of providing care can impact well-being long term (Gaugler, 2010). Because relational outcomes are context-specific, scholars have called for in-depth investigations of patterns of interdependence, asking scholars to provide a “situation-based understanding of interaction—an analysis that examines each person’s needs, cognitions, and motives in relation to one another and in the context of the situation in which the interaction transpires” (Rusbult & Van Lange, 2003, p. 353). Thus, our goal in this study was to investigate interdependence in couples after a stroke, focusing on the nuances of contextually based relational changes. To that end, we advance the following research question:
Method
To answer our research question, we analyzed interview data from 41 individuals: 20 stroke survivors (10 = females, 10 = males) and 21 caregiving partners (11 = females, 10 = males). The data reflected the experiences of 23 unique couples (18 complete couples—interviews from both partners) from nine different states in the United States and represented instances of both hemorrhagic and ischemic stroke. If participants had experienced multiple strokes, we asked them to report on the first stroke. The time since the first stroke ranged from 1 to 21 years (M = 6.91, SD = 4.65). Stroke survivors ranged in age from 27 to 68 (M = 46) years at the time of the stroke and 32 to 72 (M = 53.11) years when we conducted the interview. Two stroke survivors chose not to disclose their age at the time of their first stroke.
Procedures
Following institutional review board (IRB) approval from the lead author’s corresponding institution at the time of data collection (protocol #18005), the first author conducted a Google search for stroke support groups in the United States and compiled a list of 190 organizations. Group administrators received an IRB-approved email message to see whether they would be willing to share the study information (inclusion criteria, compensation, etc.) with their members or others eligible to participate. People who were interested were instructed through the shared recruitment materials to reach out via email to determine whether they met the inclusion criteria (be over 18 years old and be able to communicate during a 60- to 90-minute interview). Individuals were permitted to participate if they experienced difficulty speaking but could still verbally communicate. Once it was determined that individuals were eligible, we scheduled a time for an in-person (n = 6) or phone interview (n = 35) for each participant. The choice of a face-to-face or phone interview was left up to the participant but was largely influenced by geographic location. We weighed the advantages and disadvantages of phone interviews (lack of nonverbal cues, etc.) and thought that accessibility for participants was more important. The lead author or supervised, trained research assistants conducted individual interviews. New interviews were scheduled until theoretical saturation was reached and new insights ceased to emerge from the interviews (Lowe et al., 2018).
The occurrence of stroke can be physically and emotionally taxing for both partners (American Stroke Association, 2021). With that in mind, we constructed a two-pronged consent process and a flexible, semi-structured interview protocol using a set of prepared questions as a guide but not a script. First, we emailed potential participants a link to a consent document we created using the Qualtrics survey platform. We sent this email 1 week prior to our scheduled interview. Participants had the opportunity to read, review, and submit the document at their convenience ahead of our meeting. When the interview began, we reviewed the consent document and highlighted several main areas to ensure understanding (the interview will be audio-recorded, participants could end the interview at any time, and they could skip any question they did not want to answer). When we conducted the interviews, we were sensitive to the conversational patterns of our participants as well as the physical and emotional toll that a brain injury can cause. To alleviate some of that burden and offer additional clarity related to their experiences, several people invited their family members to be in the room or on the phone with them during their individual interview. The IRB protocol stated that anyone present or involved in the interview had to provide consent. After each person consented to participate, we began the formal interview.
The individual, semi-structured interviews lasted about an hour on average and included prompts about the stroke event and its outcomes (e.g., “Do you know where in the brain the stroke took place [left or right side of the brain]?”; “Did your lifestyle change because of the stroke?”), one’s romantic relationship before and after stroke (e.g., “Can you tell me, briefly, the story of your relationship?”; “How, if at all, did your relationship with your partner change after the stroke?”), challenges (e.g., “When the stroke occurred, can you remember the things that seemed like big unknowns or things you had questions about?”; “What, if any, emotional impact did the stroke have on your life, relationship, social network?”), and victories (e.g., “Can you think of any positive changes that occurred in your relationship because of stroke?”) they had experienced since the stroke. The full interview guide is available from the lead author. Each interview included in this study was audio-recorded, transcribed, and de-identified, resulting in 898 pages of double-spaced text. After each interview, participants received an email with a list of national stroke support groups and counseling services along with a link to receive their US$20 e-gift card as a thank you for their participation.
Analysis
To analyze the data, we used a phronetic iterative approach that gave primacy to the data while simultaneously recognizing the influence of sensitizing concepts and other guiding theoretical frames (Tracy, 2020). The goal of this analytic strategy is to produce “use-inspired, practical research that not only builds theory, but also provides guidance on social practice and action” (Tracy, 2020, p. 210). The phronetic iterative approach includes two stages of analysis: primary-cycle coding and secondary-cycle coding. Like traditional grounded theory methods, this approach guides researchers as they extrapolate from text to theory. The metatheoretical assumptions of the phronetic iterative approach are consistent with those of the interpretive paradigm (Creswell, 2007). Ontologically, researchers using this approach believe reality is subjectively known and experienced, so their goal is not to uncover objective truth, but rather to understand individuals’ lived experiences from their own perspective. Epistemologically, researchers understand that knowledge is socially constructed in participants’ own lives and through their interactions with each other and with the researcher. Interpretive researchers embrace their role in the collection and analysis of empirical data with an understanding that their own knowledge and life experiences inform their interpretations (Creswell, 2007).
We followed a systematic, stepwise approach to analysis. The first step in our process involved the first two authors individually reading each interview to better understand the data set as a whole and to reflect on emerging threads as they related to our initial, general research question (How do partners relate to one another after a stroke?). Next, we met to finalize a more specific research question (How do romantic partners experience changes in interdependence in their relationship following a stroke?) that would inform our detailed analysis. This question was based both on our reading of the data and on our familiarity with the literature on interdependence in romantic partnerships, and this iterative approach to developing a research question is consistent with Tracy’s (2020) guidelines. We took a second pass through the data, using our research question and existing literature on stroke and interdependence as a guide, and identified all participant responses referring to interdependence in the romantic relationship. In particular, we searched for participants’ reflections on interference, facilitation, times when partners relied on one another, or discussions of dependence, given that all of these processes are fundamental to Berscheid’s (1983, 1985) conceptualizations of interdependence. We put all the instances of interdependence into a new data file that resulted in 82 pages of double-spaced text.
Then, our entire three-person team used the focused data file to engage in primary-cycle coding, in which we assigned a word or short phrase that captured the action in each portion (line or incident) of text. Examples of initial codes include questioning the future, seeking support, rejecting help, and changing roles. We met to discuss our insights, distill our initial codes, and distinguish salient experiences in the data. We identified 10 categories and created a codebook with definitions and exemplars of each category. Next, we applied the codebook to the data, identifying portions of the text that fit into each category. We separated the data into different files, one for each category, and read each individually to understand the properties and dimensions of each category.
Next, we utilized secondary-cycle coding to interrogate connections among the categories and to the literature on interdependence and stroke. During this process, which took place over several weeks and multiple meetings among the researchers, we made higher level interpretations of the data with a goal of “construct[ing] explanations for the participants’ explanations” (Tracy, 2020, p. 7). Secondary-cycle coding is similar to axial coding in grounded theory methods, in that the researchers’ goal is to “give coherence to the emerging analysis” (Charmaz, 2006, p. 60). In service of that goal, we experimented with different ways to explain the data, including trying to identify a central category, visualizing the data, and grouping like categories and subcategories until we identified the explanation presented below, which helped us achieve a high degree of thematic saturation (fully explain the processes evident in the data without the need for further categories; Lowe et al., 2018). We arrived at three overarching categories with six subcategories (see Figure 1).
Participants’ changes after stroke.
Finally, we analyzed the data at the couple level for any additional insights that would emerge within couples, rather than at the individual level, given our focus on interdependence. Specifically, we paired the data for all couples in which both members (a) participated in the study and (b) had excerpts about interdependence in their interview data (n = 14 couples). We read the data for each couple and examined how the couple talked about stroke, making notes about every couple’s data. Then, we looked for notable experiences across couples. After completing these steps individually, we met to discuss the within-couple insights, which are reported in the following section.
Throughout this process, we used memos to chart our progress, stimulate discussion, and reflect on emerging novel ideas. Memos and continuous discussion among the researchers were particularly helpful for promoting reflexivity in our analysis or “awareness about [our] actions, feelings and perceptions” (Darawsheh, 2014, p. 561). Specifically, all three authors are health and relationship researchers trained in qualitative research, and the first author is also an expert on stroke and is trained as a family counselor. Thus, it was important for us to remain aware of how our preexisting knowledge and training influenced our interpretations of the data. Including multiple researcher perspectives, consulting prior research on stroke and interdependence, and memoing about and discussing our biases helped us to remain reflexive throughout our analyses.
Results
The stroke experience was life-changing for participants. Both stroke survivors and their partners described a variety of physiological and cognitive effects of stroke. Physically, stroke survivors experienced weakness in their limbs, seizures and tremors, fatigue, migraines, and difficulty with speech. Cognitively, they were slow to process information, had poor memory, were unable to process time or handle stress, and had difficulty finding words. These changes impacted survivors’ mobility, day-to-day functioning, and ability to work, parent, socialize, and maintain their spousal relationship. Ultimately, changes caused by the stroke necessitated adaptation at both individual and relational levels for survivors and their romantic partners. In the paragraphs that follow, we use three overarching categories to describe how participants adapted to changes in themselves (changes to self), their partners (changes to partners), and their relationship (changes to relationship). Within each of those larger divisions, we explore the nuance of how various changes impacted the lives of the stroke survivors and their partners (see Figure 1). We lightly edited quotes for readability and clarity.
Changes to Self
Participants identified significant changes to self following the stroke diagnosis, recognizing shifts in themselves and in the way others perceived them. Both survivors and their partners viewed themselves differently following the stroke. Survivors experienced changes due to the physical and cognitive losses caused by stroke, preventing them from fulfilling valued roles. For example, one stroke survivor recognized that his coworkers no longer viewed him as an expert: Pre-stroke I was a system performance engineer . . . and I had the respect from my co-workers who they would call me when they had questions or needed help with something . . . and now I don’t hear from anyone of them.
Similarly, another participant identified multiple roles changing after his stroke: I used to be outside all the time. And also my heart medication that I take, I just can’t be in the sun for very long. . .Well now I have to see my son and my wife plant our flowers and mow the yard. It’s frustrating I can’t do that.
Other individuals saw positive changes in themselves, as one survivor mentioned: “The stroke changed me, and it changed me, I feel, in a positive sense. It gave me the different perspective of what I was doing prior to my stroke.” For partners, changes often related to how they had to cope with the stroke-related changes in the survivor. For example, one participant described how her interactions with her spouse changed: “I’m much more patient with him.” Others saw themselves as wanting to escape the relationship at times following the stroke, which was a major shift in how they felt toward their partner before stroke, as noted by a caregiving partner: “I really wanted to run away from home much more so than I’ve ever wanted to before.” These changes in how people saw themselves created both stress and confusion.
Ultimately, both survivors and their spouses had to take on new roles and tasks (e.g., caregiving) while losing others (e.g., breadwinner). Individuals also identified new and/or changed qualities in themselves (e.g., patience) and recognized differences in their daily routines following the stroke. Two experiences—sacrificing self and struggling with independence—were particularly challenging for survivors and spouses. Each of these experiences, described in the paragraphs that follow, intensified participants’ perceptions of changes to self.
Sacrificing self
Caregiving partners, in particular, struggled with sacrificing self after the stroke diagnosis, feeling like they had to give up self-care, goals, personal desires, and relationships to manage the aftereffects of the stroke. For example, one caregiving partner mentioned, “I didn’t start thinking about myself until about two and a half years out.” These sacrifices resonated as significant changes in how people saw themselves. Another partner described how little time he had for himself following his wife’s stroke: I did the math one day, after her stroke, and I’m like “Ok, on average I have about 19 hours of stuff to get done per day. Given what I’ve got going on right now, I actually just, like, estimated at a week and went, ok, on average I can only sleep five hours a day.”
Similarly, another caregiving participant talked about taking care of her partner’s every need: “I had to tend to everything, all of his needs. Physically, emotionally, everything.” Individuals discussed minor changes, like having to take on new, often unwanted chores, as well as major changes, like having to pause their life to be a full-time caregiver.
Partners also struggled with the overwhelming nature of sacrificing their own interests by having to take on so many roles. As one participant articulated, “It’s a lot being the caretaker, the lover, the, uh, you know what I mean? To handle the responsibility of the bills and being sure that everything is straight.” Partners commonly described a decline in mental and physical health because they were so focused on their surviving spouse. For instance, a spouse talked about the decline in his own health following his wife’s stroke: You let your physical health go a little bit whenever you’re dealing with so many things, you know? You don’t think about going to work or not and doin’ this and doin’ that. And you kinda go through a phase where you’re just glad to be alive, glad everybody’s alive that, that’s important to you, so you don’t worry about what you eat or you don’t worry about nutritional things, you know, and, and we’re not getting’ any younger.
Overall, these experiences showcase how the stroke had not only direct physical effects for the stroke survivor but also indirect ramifications for the caregiving partner, whose sacrifices had a tangible impact on their own mental and physical health.
Regardless of the consequences, many partners remained devoted to helping their spouses. Some tried to make sense of their sacrifice, rationalizing it as what good partners do in relationships. For instance, one participant mentioned why she gave up so much to care for her husband: “I don’t know how long he is going to live, but he’s a good guy that doesn’t deserve this.” Other partners dedicated themselves to the thought that one day the person would heal from the stroke, as a spouse described: “I’ll do anything to you know, just this undying devotion to his recovery and his well-being.” Despite the overwhelming nature of self-sacrifice, many partners felt that their actions were beneficial for their partner’s recovery.
Struggling with independence
Both stroke survivors and their partners perceived changes in themselves through struggling with independence, recognizing that the stroke restricted their individual freedoms. For survivors, independence was constrained due to the loss of physical and cognitive functioning caused by the stroke (e.g., language, mobility). For instance, one stroke survivor described the frustration of not being able to speak: I was very independent and so, when I was trying to get my words back or when I was having muscle spasm attacks, I can’t get my words out when they happen at all, I can’t speak or I lose my train of thought with it. So [spouse] has this annoying habit of trying to say my words for me. . . he knows what my words are going to be, even before he can see me struggling to get them out and he knows what those words really are, so the negative for me would be some of my independence is gone and I kind of feel like he has more control over that, than he used to.
Similarly, another participant discussed limitations in mobility after his stroke because the family could only afford one car: “I’m home by myself. My wings are clipped, I can’t go out anywhere.” He went on to say that even if he could leave, he thought his wife would “look unfavorably” on any attempt to leave home, so not only was he limited by his circumstances but also by his partner’s expectations of his abilities and (lack of) independence following his stroke.
For their part, partners’ independence was limited by their caregiving duties. They struggled with wanting to do something for themselves but feeling unable to leave the survivor at home. One caregiving partner mentioned, “I would love to get out every day and, and carve out time for myself. I’d love to carve out an hour of walking, an hour of bible study every day.” Partners craved the independence to make their own decisions and spend time on their own, but the stroke created circumstances that made it difficult to do so. The increase in interdependence between partners intensified the struggle for independence. For instance, a participant discussed the stress of feeling too interconnected after her husband’s stroke: He had some habits like, and he still does it. It’s some kind of attachment to me where it’s almost like I feel controlled. . . He constantly talks to me and he’s constantly at me and wanting a response from me. And following me through the house and if he doesn’t get the response he wants, he pursues me. And. . . it just, it just got to me.
Another caregiving partner talked about the loss of independence for herself and her husband due to his stroke: “we’re very independent people and we like our independence. And he was dependent on me which was not easy.” Overall, both partners and survivors wanted more independence than their circumstances were able to offer them, which was harmful not only to them as individuals but also to the health of their relationship.
Changes to Partner
Participants recognized changes not only in themselves but also in their spouse. Although a few stroke survivors reflected on changes that they noticed in their partners (“[He] had to develop extreme patience with me” and “she couldn’t do her career and take care of me and the kids”), most changes to partner included partners talking about changes they saw in the stroke survivor. The most frequent was cognitive deviations in the survivor, including changes to memory, processing, and executive functioning, which seemed to fundamentally alter the survivor. One participant described these changes poignantly when he discussed how his wife struggled with social interaction following her stroke: We have a fairly large social group that likes to get together in large groups and hang out and have a good time, and she wanted to get back to that, but every time she went to these gatherings she would just basically clam up and sit in a corner because by the time she put her words together to interject, the conversation’s already blown way past her, right? And, she’s speaking not loudly enough to be heard and had all those problems.
Frequently, partners noted how survivors had become someone who needed to be taken care of, as articulated by the following participant: “And the longer it went on the more he became yet another kid to take care of. Just because, you know, the executive function disorder.” Partners also discussed emotional changes in the stroke survivor. For example, one participant mentioned, “Before the stroke, her temperament was a lot different. She was a lot more understanding.” Another spouse also noticed his wife’s “lack of empathy” after her stroke and talked about how that impacted their relationship. Overall, partners noticed a variety of changes in the stroke survivor that impacted their cognitive, emotional, and social capabilities.
Partners expressed a great deal of frustration and sadness with these changes. For instance, a participant talked about how her husband overestimated his ability to remember tasks, which introduced new stressors: “And that was really frustrating, because he thought he could remember to do those things just if he wrote them down in an old small book. But then getting him to remember to look at those things.” Another caregiving partner talked about how challenging it was to see her husband struggle with everyday activities like walking up steps or reading a book. Frequently, though, partners’ reactions went beyond stress, anxiety, and frustration and were more reflective of grief. Partners had lost aspects of the stroke survivor, and they felt a deep sense of grief for the life they thought they would have with the survivor (“It’s very hard to see your husband who is the strong person all of a sudden not the strong person anymore” and “I couldn’t, we couldn’t talk about the future”). One participant even used the metaphor of death to describe life after her spouse’s stroke: Here’s the thing about being a caregiver. I knew that old life was dead and gone. But I couldn’t tell [him] that life was dead. And if I killed his reason for getting up in the morning, if I killed all of his hope, now I’ve killed everything. And I mean that’s what most people literally struggle with is lack of hope. [He] was nothing but hope. So for me to kill that would be devastating. I could not do that to him. So I had to try to support that hope even though I knew that old life was dead and gone and that was torture.
Clearly, partners struggled with changes that they perceived in the stroke survivor, with some even mourning the loss of the person they used to be as they learned to accept and adapt to their new life with the survivor.
Changes to the Relationship
Although participants noted transformations in themselves and their spouse, they also became aware of changes to their relationship after stroke. In fact, changes to the relationship appeared to be a byproduct of, or at least related to, changes to self and partner. Both stroke survivors and caregiving partners commented on differences they noticed within their relational dynamic that seemed to manifest in different ways (“Frankly it’s not even fun right now, because I’m your nurse,” “Obviously our relationship has changed. You know it’s bound to when you become more of like a mothering role than a spousal role in some ways but that doesn’t mean that you leave someone,” and “There was a lot of co-dependency, which is you know completely understandable”). Couples worked to negotiate the new landscape of their relationship after stroke that often included a change to how they interacted and thought about their relationship.
Providing support and helping
One aspect of relational change was the altered dynamic of providing support. Caregiving partners in particular talked about how they had to learn to be helpful in new ways (“Well, now I take care of all his medications,” “My focus was very much on providing for him the best I could”), and stroke survivors talked about recognizing and appreciating that effort. For example, one survivor talked about how her husband was supportive and also vital to her recovery: Even today, he goes with me to my doctor’s appointments and he listens, when we go I do most of the talking unless I really can’t. He helps me achieve my goals by letting me explain to the doctors what I want to do [with] my treatment what I would like the results from my treatment [to] be and he is there to support that all the time, all the time. He has gone with me to physical therapy and he was kind of that cheerleader on the side, observing everything that is going on but encouraging me every step of the way when I would try to get something accomplished. He is just, it’s just what he does, and he is just my support and encouragement.
The participant’s partner attended physical therapy appointments and helped her achieve her goals. They recognized each other’s efforts and talked about how their connection was invaluable to the recovery process.
Stroke survivors seemed to conceptualize the efforts of their partner as involving a new type of intuition or emotional investment that was more in tune with their altered situation. One stroke survivor noted, “He can just take one look at me and be like, ‘okay this is too much, time for you to go home and just rest.’ . . . He gets it.” These perspective changes were noticeable by participants. Other stroke survivors noted changes that required more patience from their partner: She would ask me what I think and wait a long time for me to say it. Most people would just pretend to understand what I said and move on. She waited for me and repeat back what I said. And I thought no one else did this for me because she totally cared about what I thought. And that is noticeable.
Here, a participant talks how his partner invested the effort to “repeat back” what he said and how that effort translated into a meaningful connection. Relational change seemed to involve additional effort or altered perspectives by partners as they adapted to the new normal. Participants regularly commented on the specific ways that caregiving partners navigated life after stroke by using tangible yet intimate strategies to help.
Providing support, but hurting
At times, the assistance that partners offered was perceived as less than helpful. Several survivors noted that the ways their partners tried to help were actually counterproductive or even detrimental to their recovery. A stroke survivor summed it up when she said, “the natural reaction for people is to try to think of that word and try to help me. But that actually makes that worse.” Other participants echoed this sentiment. For example, one partner had a habit of finishing his wife’s sentences, and although he was trying to help, she said that his unsolicited efforts were ultimately harmful to her independence. The partner even commented on the issue during his individual interview when he said, “I finish her words and her sentences because that’s what I had to do for two years and it’s just a habit and I’m trying to break it but sometimes you can’t.” Both partners recognized this practice as a challenge within their relationship after stroke, and this example illustrates how caregiving partners sometimes tried to assist their partner out of frustration or just impatience, but their help was often unwelcome or even hurtful.
Struggling to communicate
Participants also recounted that communicating after stroke was a challenge that involved physical and relational obstacles, at least initially (“I couldn’t talk long until recently” and “She tries to go in another room because she could tell she’s pushed herself too much and she’s gonna start not being able to speak”). Speaking was physically exhausting and emotionally frustrating for both partners. In addition to the physical obstacles of losing language, loss of communication translated into a loss of social connection and an emergence of disagreements (“Here I am with this man who can’t talk about the relationship” and “We still seem to have a lot more misunderstandings now than we ever did, and most of it is communication”). The way couples interacted and managed changes was frustrating, even when met with ongoing effort to adapt.
Participants worked to intentionally alter their communication norms, in part to address the specific challenges involved with interacting after stroke. Caregiving partners, for example, needed to reassess their perceptions and practice patience when it came to communicating with their spouse, but that was not always easy. One participant talked about how she had to be more attentive to her husband’s well-being after his stroke because he was unable to communicate: “A couple of years after the stroke, something just wasn’t right. And he can’t tell me. . . So it’s me guessing it, and yet not wanting to overreact.” It turned out that her husband had appendicitis, but because he could not communicate the location and intensity of the pain, she had to act based on her best guess of the situation. Others described their trials as they worked to adapt to new communication patterns. Another caregiving partner recalled how she and her husband initially tried to communicate after his stroke. She said, “He would like spell something out [with a chart of letters] and by the time [he] finished it you were just like ‘I don’t even know where you are anymore’.” Her partner remembered the alphabet board, as well, and talked about the empathy he felt for his wife as he struggled to “spell out words by pointing to them.” Trying new things and adapting was an ongoing process that required patience and coordination between partners.
Positive reframing
Finally, participants reflected on the effortful process of change and how rethinking their situation influenced how they conceptualized their relationship. Participants noted that the stroke was a wakeup call that encouraged them to reevaluate the priorities in their life: “Well, after the first one it was a chance for me to rethink in terms of well maybe this is a new start to our relationship. So that was a positive thing,” “It changed me I feel in a positive sense. It gave me the different perspective of what I was doing prior to my stroke,” and “I told her that maybe this was a blessing. . . [My partner] and I were both identifying ourselves by our careers. I don’t think now either of us do that. So, I guess that’s a big change.” Common to all of these quotes is the idea that although the stroke was a roadblock that stopped couples in their tracks, it was also an opportunity to refocus on their relationship.
The perspective shift was an effortful, ongoing process. To help ease the stress of the transition from partner to caregiver, some worked to find humor in their new arrangement. For example, one caregiving partner talked about how her husband was a very independent person prior to the stroke. When he came home from the hospital, he needed a lot of care and both of them struggled with the new dynamic, so they reframed the awkwardness into humor: We make little jokes. . . I don’t know what that would be like to have somebody comin’ in to, you know, wipe me or dry me off or something so that’s, you have to give somebody their dignity and respect.
Others commented that the adjustment meant sacrificing the relationship they wanted for the relationship that developed after stroke. A caregiving partner noted, “I’ve finally after so many years have learned how to deal with him better. It still takes sacrifice on my part. It’s not the relationship, you know, that most people think and want. But we’ve worked things out.” Change was not necessarily easy for any of the couples in this study, but reframing helped them move forward and interject a bit of control into a situation that felt out of their control.
Within-couple changes
Our within-couple analysis revealed two additional relationship-level changes. First, both partners explicitly acknowledged altered relational dynamics in nearly every case. Some of those changes resulted from altered daily roles and routines, but others took a far more emotional toll. One particularly poignant example is parentification—both partners perceived that the caregiving spouse had to take on a parent-like role for the survivor. One caregiving partner said she had to “coddle” her spouse after his stroke: “I mean that’s not his fault, you know, he just became infantile. He needed help with absolutely everything.” Her husband noticed these changes as well and perceived that he was no longer able to do much around the house: “They just consider it better to do it themselves than for me to do it and have them standing by me and everything.” Neither partner was fond of these changes: Caregivers and survivors alike yearned for more normalcy in their romantic partnership, and survivors, in particular, felt sad, hurt, or defensive about their inability to care for themselves. Yet despite their resentment of some of the relationship changes, couples were generally on the same page about the fact that their relationship was different after the stroke.
Second, couples reflected on the establishment of a new normal in their partnerships. Although they grieved for their lives and relationships prior to the stroke, they were generally able to figure out how to relate to one another and manage their lives over time. One caregiving partner both lamented the lack of independence immediately following her husband’s stroke (“He was very dependent on me which was not easy”) and expressed admiration for the way he had been able to adjust over time (“He’s getting back to, well he has been for quite awhile getting back to doing things, so we’ll get there”). Many couples reflected on changes like this one, noting how disruptive the stroke was to their dynamic, but also showing resilience at being able to adapt to change. For example, one caregiving spouse said that over time, she was able to “focus on creating this new life together, rather than for years trying to recreate the old life.” Her husband also noted that accomplishing new goals “just takes time.” Given enough time, space, and resources, couples were generally able to readjust and establish a dynamic that worked for them, even if it was different than what they had before.
Discussion
The impact of stroke is profound, with direct and indirect effects for both the person who experiences the stroke and for their partner. Our goal in this investigation was to explore how couples experienced changes in interdependence following a stroke. Interpretive analyses revealed that perceived changes at both individual and relationship levels highlighted shifts in interdependence. In terms of changes to self, participants reflected on sacrifices they made for their partner and ways they struggled with independence after the stroke. Participants also noticed a variety of cognitive and emotional changes in their spouse. In the relationship, couples struggled to find appropriate and effective ways to provide support, communicate with one another, and reframe their experiences in positive ways. In the paragraphs that follow, we discuss the implications of these results for researchers and health practitioners.
The stress of major life changes after a stroke was a shared experience. This finding adds to the work of Blonder et al. (2007) who found that a person’s emotional health after stroke influenced their partner’s perception of the relationship. Those authors suggest that their initial findings “indicate the need for replication and further research on the mutual burdens of stroke for patient and caregiver” (p. 90). Our results propose that the implications of stroke go beyond the individual patient to influence how people think about and enact their relationship after stroke. Although other studies have noted the relational changes associated with this chronic illness (Anderson et al., 2017; Anderson & Keating, 2017; Blonder et al., 2007; McPherson et al., 2011), our study highlights the ongoing relational adjustments associated with interdependence of the post-stroke experiences as couples wrestle with a new set of circumstances that linger long after the stroke itself.
Our findings also cohere with research on interdependence in romantic partnerships by highlighting the ripple effect health events can have on romantic relationships. Theorists suggest that although interdependence shapes relationships, it also shapes people as individuals because partners come to think of themselves as part of a collective rather than as distinct entities (Agnew et al., 1998). Our overarching categories of changes to self, partner, and relationship emphasize both individual-level and relationship-level changes and highlight how partners altered their cognitions and emotions (e.g., struggling with independence, positive reframing) and their behaviors (e.g., sacrificing self, struggling to communicate) after stroke. Interdependence research implies that these changes likely made couples’ relationships more interdependent than they were prior to the stroke. Interdependence is determined by the types, frequency, and strength of interconnections (Berscheid, 1983), and overall, partners were doing a variety of activities together, with great frequency, that were necessary for individual and relational well-being and sometimes even for survival.
The changes to interdependence identified in this study also extend interdependence research, given the unique constraints of the stroke context. For instance, Berscheid’s (1985) EIR model suggested that closer relationships offer more opportunities for incompatibility because there are more chances for partners to interfere with one another’s plans; however, that interference is usually temporary and does not require significant effort to address. On the contrary, long-term interference necessitates substantial adjustments, including relinquishing plans or acquiring new resources that allow people to achieve their goals without help from a partner (Berscheid, 1985). In the case of stroke, interruptions to plans and goals are often long term or permanent (Gaugler, 2010), so short-term adjustments to spouses’ patterns and routines are insufficient for addressing their stress. Thus, participants reflected on skills they developed, like learning new ways to be helpful to their partner, adjusting to a different type of emotional investment in their relationship, and adopting new communication practices.
Notably, the EIR model suggests that although these types of changes make a relationship more compatible (because individuals have found new ways to achieve goals), they also function to make relationships less close because the person acquiring the new skills does so individually, decreasing their reliance on their partner (Berscheid, 1985). Dependence becomes less mutual because one partner depends more on the relationship than the other (Berscheid & Ammazzalorso, 2001). In turn, the partner who is less dependent has greater power and less commitment (Agnew et al., 1998; Rusbult et al., 2001). For partners managing the aftermath of stroke, this research paints a bleak picture for the future of the relationship, indicating that stroke survivors may become unilaterally dependent on their partner, who in turn might lose their emotional investment in the relationship as they gain power and become less reliant on the relationship for their own well-being. Indeed, some research on stroke and marriage found that caregiving spouses who viewed their relationship as unbalanced felt a greater burden than those who perceived some equity in their partnerships (McPherson et al., 2011). In contrast, the pattern predicted by the EIR model was not evident in our data. Certainly, both survivors and their partners recognized the lack of mutuality in their dependence on their spouse for survival and the changes to their partnership, yet most partners remained committed to staying in the relationship. The emotional tenor of that commitment differed, with some caregiving partners citing love and admiration as their reason for staying in the relationship (“I love you and I want to be with you,” “the commitment, the love is still there”) and others citing resignation (“I’ve accepted that I have to do this,” “I am still going to treat him like my husband even though he is unrecognizable from the person that I married”). Very few partners expressed any intention or desire to leave the relationship altogether. These findings echo Anderson and Keating’s (2017) review of qualitative research on marriage after stroke: Although stroke presented serious challenges to the romantic partnership, most couples were able to establish a new normal with their spouse. In our study, and in contrast with the EIR model, it seems that partners were resilient in overcoming the challenges of unilateral dependence.
Our findings also coalesce with research that describes the dyadic nature of identity. Participants described various changes to the ways they saw themselves, their partner, and their relationship, indicating a degree of identity change. Significant life events often force people to redefine their identities as they make sense of new roles and qualities (Neimeyer, 2004). In our data, both partners underwent changes to the way they viewed themselves, even though only one actually experienced the stroke. Multiple theories of identity recognize identity as a social phenomenon, wherein identity is shaped by interpersonal interactions. For example, social identity theory argues that people construct their identities based on the groups they belong to (Tajfel, 1978). Similarly, the communication theory of identity suggests that identities are primarily constructed through interactions and relationships with others (Hecht et al., 2003). Our results offer further support for this claim and suggest that identities are also influenced by changes to relational partners.
Our findings also point to interdependence as a mechanism for identity change in close relationships. As interdependence in the relationship shifted due to the stroke, participants recognized new roles and new characteristics of themselves, the relationship, and the partner. Changes in interdependence, then, may contribute to shifts in relational identity. Research suggests that discrepancies in a couple’s relational identity may be associated with greater negativity and stress for partners (Merrill & Afifi, 2017). As such, exploring the mechanism by which identity shifts may be useful for understanding how couples manage stressful events. When one partner experiences a life-altering event, the identity of that relationship (and the partners that compose it) shifts to accommodate new individual needs. As interdependence changes, partners may alter the way they view themselves and their relationship.
Practical Implications
Clearly, the results of our study have rich implications for theory and research, but they also have practical utility. Namely, our findings imply that there may be some tangible benefits of interconnectedness between partners after stroke. For example, caregiving partners in this study talked about how they had to elevate their attentiveness to physical abnormalities in their stroke survivor and take unilateral action when necessary. Similarly, stroke survivors recognized the impact of the situation and advocated for their partner to meet up with friends, join a support group, or take time for themselves. These results echo those of Maratos et al. (2016); the participants in their study expressed a profound need for independence after stroke, but also noted that in some circumstances they depended on friends and family for even basic needs that were inaccessible to them. In our own study, the unknowns associated with stroke and the many perspective changes that followed seemed to also usher in a period of heightened awareness of one’s relational partner. Attentiveness by informal caregivers to subtle changes related to the illness or injury may be an invaluable resource for health care providers. With that in mind, even minimal training for family caregivers on the signs of stroke or health issues that commonly emerge after stroke may give medical professionals a more accurate view of, and influence over, the practice of informal care.
Healing is a collaborative process that starts at the care center (hospital or rehabilitation facility) and continues long after a patient returns home. Offering partners and family members the tools to continue the recovery process outside of the medical facility would enable health care professionals to extend their reach, diversify their team, and share their expertise beyond traditional, in-person interactions. For example, providing individual counseling for partners, offering diverse support groups for families, and sharing easy-to-understand health information would allow providers to empower those at home throughout the recovery process. For participants in this study, they noted that the real work of recovery and healing began once they returned home. Yet, that is when they felt the most isolated. Recovery from a major medical event often involves a great deal of informal support that exists beyond the walls of the hospital or care facility, so ensuring that informal caregivers have the resources and encouragement they need is vital.
Strengths, Limitations, and Directions for Future Research
One strength of this study is the inclusion of young stroke survivors. Although the ages of stroke survivors in this study ranged from 27 to 68 at the time of their stroke, the mean age was 46 years. Individuals under the age of 65 make up one-third of all stroke survivors (Hall et al., 2012), so their inclusion in this study is important. Specifically, stroke survivors in this study noted that medical professionals approached their case with skepticism because, as one survivor recounted hearing, “My doctor said that this is an old stroke. . . and this is how these young people are being treated. No! They need to be treated like young people who have had strokes.” The medical community can offer more targeted support to young stroke survivors and their families if we invest in learning what their unique situation involves.
Future research related to relationships after stroke should continue to investigate the connection between specific cognitive or physical deficits and various relational challenges. In this study, we did not link the nonrelational effects of stroke (physical and cognitive changes) to relational appraisals. However, the medical community could benefit from a richer understanding of how couples negotiate various gradations of impairment after stroke. It could be that those couples who have to manage minor deficits experience more uncertainty and frustration because it may be easier to overlook the stroke even though its effects continue to linger. It could be equally important how the couple appraises the effects of the stroke (major or minor) on their relationship. As we did not gather explicit details regarding vocation, parental responsibilities, or a measure of stroke severity, further investigation is needed to better understand how these elements might influence a couple’s post-stroke life together. It also is important to consider how the effects of stroke may comingle with other life stressors or responsibilities and influence one’s view of the self, their partner, and the relationship.
Relatedly, we should temper our findings in light of some characteristics of our sample and our analytic strategy. First, we captured participants’ experiences at one moment in time, so though we reported on participants’ perceptions of changes in their relationships, we cannot make more objective claims about trends over time. Second, most individuals in our sample who had experienced stroke were quite young when their stroke occurred. Specifically, only four participants’ stroke happened at/over the age of 65; in contrast, approximately two-thirds of people who have a stroke in the United States are older than 65 (CDC, 2020b). Although it is important to assess how individuals’ age when they had their stroke impacts their experiences and outcomes, we were unable to do so because our sample skewed young. This issue is, perhaps, related to the limitations of convenience sampling. Some of the study procedures (recruitment and consent) occurred online, which may have precluded older individuals from participating. In addition, nearly 25% of people who have a stroke have had one previously (CDC, 2020b), so it is possible that older individuals who have experienced multiple strokes had more physical or speech limitations that prevented their participation.
Finally, we are missing a crucial piece of the puzzle by not including more of a discussion on the institutional challenges, as well as support, associated with life after stroke. Participants alluded to being a part of brain injury support groups, working with transdisciplinary medical teams, and struggling to connect with health care professionals. We did not, however, dig deeper into these experiences for this study but recognize that this is an important aspect of the post-stroke life for many couples. We suggest that future research incorporate more of a holistic approach to the relational and medical experiences of couples after one partner has a stroke. That information would allow for a more nuanced understanding of how various systems work together in the wake of a major medical event.
Conclusion
In this study we sought to investigate the lived experiences of people who have experienced stroke and their caregiving partners by focusing on the ways that mutual influence impacts relational perceptions after a stroke. Through semi-structured interviews, we learned that the stroke introduced challenges that led to individual and relational change. At the individual level, participants recognized changes both in themselves and in their romantic partner. At the relationship level, they struggled to offer and receive help and to communicate, but they regularly found ways to reappraise their experiences positively.
Footnotes
Author’s Note
Data collection was part of the first author’s dissertation project and was partially funded by the Ruth Anne Clark award. This award, from the University of Illinois at Urbana-Champaign, is a competitively-selected award for dissertation research of out standing promise.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
