Introduction

Stroke is a first-order health problem; it is the second leading cause of death in the world and the primary cause of disability in adults. Stroke significantly impacts longevity [1,2] and is associated with a number of health problems [3].

In the last few years, the role of the informal caregiver has become a key political, social and economic issue in terms of cost-effectiveness [4–6]. The National Alliance for Caregiving has drawn special attention to caregivers as a vulnerable group, identifying caregiving overload and caring complexity as causes of emotional stress, financial strain, and health decline [7]. Caregiving knowledge overload and caring complexity, encourages a commitment to research as well as to develop evidence based interventions [4,8].

The subjective experience of surviving a stroke is characterised by a radical change in the lives of patients and their families [9], impacting physical, psychological, social, relational, emotional and spiritual experiences [1,10,11]. Everyday situations that were carried out with normalcy before stroke become now a real challenge for family members [1]. Furthermore, this dependence occurs abruptly and suddenly, and from one day to the next, close relatives become responsible of taking care of the dependent. In most cases, the spouse becomes the caregiver [9,12,13].

Previous research suggests that care-givers can, frequently, develop some problems such as pain, fatigue, loneliness, depression and poor health outcomes [14], which may affect well-being, life satisfaction, quality of life and mood [13,15]. Simultaneously, this responsibility can also bring positive experiences, such a more purposeful life, greater inner strength, learning new skills (medical/nursing tasks) or a greater closeness with the patient [16–18].

The caregiver role and its impact on health has been studied from different viewpoints and methodological strategies [1,4,5,9,19,20]. Although some studies focus on the perspective of the caregiver of a stroke survivor [15], only a few have specifically focused on spousal experiences and marital relationships [9, 21] being no evidence analyzed in Spain. Among them, it is interesting to highlight the meta-synthesis by Quinn et al. [13], that illustrates how spouses cope and adapt to caregiving when their partner has a stroke, identifying barriers and unmet needs and describing some coping strategies such as: “seeking information”, “searching for own space and well-being”, “suffering in silence”, “putting one’s own needs aside”, “adapting to a changed role”, looking for “social support” or adopting “hope and optimism”. Some derived clinical practice recommendations suggest that: the appropriateness of educational individual and group programs, the provision of respite care and cognitive behavioural therapy. Nevertheless, these studies must be expanded with some experimental research.

Literature emphasises the importance of physical and cognitive consequences of stroke, which are deeper perceived by spouses and constitute a long-term challenge for the couple [22]. Both alterations contribute to stroke survivor loss of self [23] and biographical disruption [24], which directly affect those surrounding the chronically ill. Spouses are primarily affected, putting marital relations in a vulnerable situation [9, 13] and making caregiving a difficult task.

Meleis A.I. [25, 26] proposes, that the process of coping with a chronic issue may be researched under the Transitions Theory framework. Various authors support this scheme i.e Messias and his work [27] on the experiences of parents of children diagnosed with congenital heart disease and the doctoral research of Schumacher [28] that focused on the acquisition of the role of family caregiver of persons receiving chemotherapy. Furthermore, Levine [16], focusing on management and policy strategies to enhance family long-term caregiving, identified different intervention programmes on the role of transitional care nurse. Transitions Theory offers then, a suitable framework to deal with abrupt acquired chronic processes and their consequences. Consequently, caregivers must be considered as a vulnerable population facing a health/illness transition. At the same time, nurses are expected to be competent to support them along transition, promoting facilitators and reducing inhibitors to promote healthy transition.

The present research aims to explore the experiences of spouse caregivers of patients who suffered a stroke, and to gain more in-depth knowledge about the needs and demands of spouses to facilitate the transition to caregiving [26].

Materials and methods

To achieve these research aims, a qualitative methodology was undertaken with an interpretive phenomenological approach [29]. Phenomenological research was used to answer questions of meaning trying to understand the experience as is interpreted by those living such experience. We pretend to study how spouses interpret their lives and make understanding of their experience of caring their love one after a stroke.

The fieldwork was developed with spouses of patients who were admitted to the Stroke Unit of a five hundred beds Secondary Hospital of the Spanish Public Health System Network from June 2012 to January 2014. The Stroke Unit has ten-year clinical trajectory of operating with an integral perspective and it is provided with resources to assure care continuity from the stroke event to patient comprehensive rehabilitation. During its operating period, more than three thousand patients were treated, and low long term physical damages were observed in 60% of them.

The following population inclusion criteria were considered: spouses of patients who suffered a stroke and survived, spouses who undertook the role of main caregiver for more than 6 months after discharge [5], and spouses who voluntarily agreed to take part in the study. It was considered that 6 months after discharge would be enough time for caregivers to reflect about their caring experience providing information about their transition along the caring process [30,31]. Purposive sampling considered the spouse age, length of caregiving time and stroke survivors’ acquired incapacity aiming to select a sample that comprised heterogeneous profiles [32].

Nineteen caregivers were recruited in the context of follow-up nursing consulting room where they received information related to the study. Furthermore, they were given a document with written information to calmly read at home in order to reinforce knowledge about the study. A week later, researchers phoned them to clarify information and solve doubts as well as confirm their acceptance to participate and arrange an interview. None of the caregivers declined participating. They all signed the written consent and agreed interview audio recording. One spouse was interviewed but her discourse was not included in the analysis because she was divorced and, as a consequence, was not developing the role of caregiver at the moment of the interview.

The final sample consisted of 18 spouses (5 male spouse and 13 female spouse) whose contributions resulted in a saturation of themes and subthemes. Right after, we show some characteristics of the participants, which were obtained before the in-depth interview, by a socio-demographic questionnaire and some other later mentioned tools were completed. Spouses included in the sample are at an average age of 55 years (SD: 10.63), and in some cases, they combined care with an active working life (33%). They have been developing a caregiver role during an estimated time of 28.72 months (SD: 25.98), only receiving socio-economic help in 30% of the cases. In general, the health of caregivers was subjectively considered as “good” (measured by a 5 items Likert Scale: very bad-bad, normal, good, very good), although they reported suffering from mood swings, with a tendency towards low mood in 61% of participants. In terms of caregiver overload, according to the Zarit Burden Interview [33], 5 of the 18 caregivers exhibited moderate or severe overload. Most stroke survivors were independent or mildly dependent on caregivers for basic daily activities and had higher levels of dependence in instrumental daily activities (taking Barthel Index and Lawton and Brody Scale as reference) [34, 35] (Table 1). There were some limitations in sampling (Table 1); i.e., it was difficult to access male caregivers, extreme or negative cases related to age (<40 years old), and cases with greater levels of dependency (total or severe).

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Table 1. Sample characteristics.

https://doi.org/10.1371/journal.pone.0195190.t001

Information was collected via in-depth individual and semi structured interviews [36] using a dynamic interview script that kept evolving and focusing on emerging issues as researchers moved ahead in the data analysis phase (Table 2). Interviews were conducted in a neurology office by a single interviewer (a nurse who is a member of the research team and was previously trained in the technique), lasting from 80 to 110 minutes, which also included the time for completing the previously mentioned survey (socio-demographic one, Lawton & Brody Scale, Barthel Index and Zarit Burden Interview). In some interviews, it was difficult to go through an in-depth experience disclosure. Such limitation could be related to participant’s lack of introspection or interviewer´s difficulties to stablish a good rapport. Furthermore, conducting the interviews in the same clinical setting where families had gone through their acute post-stroke experience may have established a confusing relationship between researcher and participant (therapeutic against researcher role), by influencing participant´s subsequent comments. All interviews were recorded in audio format and transcribed for further analysis. During several interviews, participants emotionally collapsed, making it necessary to quit and redirect the interview.

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Table 2. Interview guide.

https://doi.org/10.1371/journal.pone.0195190.t002

For data analysis, a thematic content analysis was carried out following the scheme proposed by Giorgi [37]. First, the interview transcription was read and re-read to identify significant information in response to the research questions and study objectives. Once data were highlighted, significant units were identified and coded according to the suggested meaning determined by the analyst researcher. Codes were all defined in a glossary, which allowed an initial interpretation. These codes were regrouped, generating themes and subthemes. Grouping was based on the shared meaning of codes and facilitated by comparing attitude and relationship linking (through networks diagramming). Theoretical reflective writing was a constant during this process [38]. Finally, in an interpretative exercise aiming to integrate all themes and subthemes, a central theme emerged, which encapsulates the essence of the experience. Attending to data saturation, we would like to add that the sense of results showing an integral and assembled proposal, and researchers deep understanding of phenomena in coherence with research question were key reference statements. The Atlas-ti version 7.0 programme was used to assist in data analysis.

The criteria of credibility, transferability and confirmability, as proposed by Guba and Lincoln [39], have been present throughout the study. Various strategies were developed to ensure credibility such as: reflexivity (with a constant reflective attitude attending methodological crossroads decision making and interpretative issues), research triangulation (comparison and discussion between researchers during analytical process) and return to interviewees (during the last interviews, as themes were becoming saturated, new questions were introduced in interviews to confirm the intersubjective experience interpretation) and clinical experts (some colleagues with wide clinical experience in the Stroke Unit critically read the results trying to provide commentaries and suggestions about no clear statements) [40]. In relation with confirmability, along this manuscript we tried to be transparent with our research process and other show researchers different stages and how we coped with different tasks and difficulties. Finally, in terms of helping audience to assess results transferability, we meticulously described the participants characteristics that conditions their experience as well as the environment were the research was developed.

This study was approved by the Ethics and Research Committee of Hospital and, during its implementation, the work team ensured the ethical principles of autonomy (informed consent), beneficence and non-maleficence (data confidentiality and care for emotional vulnerability) and equity (theoretical sampling in advanced stages of the analysis process).

Results

In terms of needs and demands to facilitate the transition to caregiving, the experience of spouses is interpreted as: Being aware and visualising critical points in caregiving, which is condensed into three major themes that emerged from participant´s narratives (Table 3): (1) Intensity of caregiving, labelled "caregiving and that’s all", (2) Disruption in the couple, labelled "breaking the couple’s life" and (3) Loneliness of caregiving, labelled "going through the non-loss alone”. Caregiving and that´s all summarizes the sense of having no life horizons and the caregiver impossibility of moving away from the caring role. Otherwise, Breaking the couple´s life together enlighten the further consequences of stroke in couples shared live biography, so that the meaning of loss is reinterpreted as the other acquired disability not visible for others except the caregiver who suffers loneliness (Going through the (non)loss alone).

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Table 3. Critical points identified by caregivers.

https://doi.org/10.1371/journal.pone.0195190.t003

Discussion

Comparing the findings of our study with those of other authors, we can say that spouses who care for a partner after a stroke are also intensely altered. This alteration results in a loss of earlier life—as reflected in the expressions of losing the life that once was [41] and lives turned upside-down [20]—and the adoption of a new vocation in the role of caregiver. As Young et al. mention in their study, the grief response can be strong so that a comprehensive caregiver assessment is necessary to discover the meaning of the experience as well as the adjustment phase of the caregiver [42].

The loss of independence, autonomy and ability to plan daily living, normal patterns and relationships as well as the loss of certainty about stroke event and its consequences in a medium-long term and the loss of self confidence in coping with this, result in spouses negative psychological experiences [43].

Regarding the latter, previous research indicates that approximately one year after the stroke, roughly half of the spouses experience high levels of caregiver role fatigue, with depressive symptoms and intense dissatisfaction with life [44]. Confirming our results, other authors refer to the lives of caregiver partners as restrictive and difficult [44], highly conditioned by apathy and with great resentment towards the required changes in their own lives because of the couple’s health problem. By contrast, the literature also refers to care-related positive experiences, which are eclipsed at times by the downsides but do exist as well. The identification and enhancement of these positive experiences improves caregiver’s life satisfaction and quality of life [45].

Roles’ changes are considered as a burden, emotionally, mentally and physically by spouses [46]. They are afraid of not being themselves anymore, and the fact of being in charge of all tasks alone intensely scares them. Constant availability and lack of knowledge are also contemplated as overwhelming. Attending to this last issue, many caregivers highlight the fact that no one has prepared them for caring neither for stablishing new ways of communication with the stroke survivor resulting in an enormous exhaustion [47]. Some consequences of this overwhelming experience are: lower vitality (fatigue and physical exhaustion), higher mental (anxiety and depression) and general health diseases incidence (sleep deprivation, back pain, headaches…), and social disfunctioning, which altogether result in a lower quality of life [9, 43].

In terms of couple biographical disruption, different authors, in the same line as our findings, express it as being trapped in a drained marital relationship [45] and a move away from the other person, considered different and unrecognizable [48]. Sometimes people express the feeling of living with another person, and feelings of alienation increase over time [45, 46] where a sense of loss in mutual understanding turns married life into a mere caregiving relationship [11].

Apart from the physical, functional, behavioural, role performance and psychological/emotional changes that could condition this non-recognition or rejection, McPherson et al. [49] describe the importance of striking a balance between giving and receiving; in other words, alignment between the dependent person’s and the caregiver’s concept of care is necessary for ensuring a healthy relationship. In addition, Bäckström et al. [50] added the need expressed by caregiver partners to receive love, empathy and emotional support from the dependent person as a necessary core element to sustain a marital relationship and a bidirectional, balanced care.

Kramer [51] connects the earlier marital relationship with the way a couple copes with the new caregiving relationship, identifying risk factors in advance. Thus, conflicting or damaged relationships place the caregiver in an especially vulnerable position where fatigue can arise in the context of a marital relationship that may have been non-existent prior to stroke. Solid interpersonal relationships (“closed-knit family”) are recognised as very powerful coping resources [52], although this does not mean that they are immune to the continuous risk of deterioration; being a constant concern among caregiver partners [53].

Last, regarding Going through the (non) loss alone, other authors analyze the great feeling of "loss" and the experience of loneliness. This loss is described in different dimensions that go from the purely functional aspects (loss of leisure time and freedom) to relational and emotional aspects (communication, support from the partner) [54].

Conclusions

After stroke, spouse caregivers have to cope with different losses, life changes and new challenges. The loss of previous roles and, as consequence, one’s identity is decisive in the transition to caregiving and dependence. Nurses should address the process through a comprehensive and integrated approach focused on transition care.

Care resources must be adapted to the interpretation that the spouses have of their caregiving role and their relationship with the different components of the caregiving process, taking in account that caregiving is an exhausted experience lived in loneliness.

The couple assessment is essential to identify vulnerable situations, and to guide the implementation of interventions promoting the couple´s biography (self-knowing for further knowing and accepting the other).

Making losses and their consequences, visible to health professionals, relatives, community and society may contribute to spouses´ experiences in being understood and consequently, to spouses’ developing appropriate roles as caregivers.

Acknowledgments

We appreciate the participation and altruistic and disinterested collaboration of caregivers. Similarly, we are grateful to Nursing Department, and to Dr. Ramirez-Moreno for the support and assistance provided in this project.

To Irene, Jaime and Elena.