Abstract Our purpose was to clarify that caregiving roles represent a situation of risk for the health of family caregivers, in home-based caring two years after cerebrovascular disease. Our aim was to determine the social and emotional repercussions of the event on family caregivers. Family caregivers living at home with stroke survivors were identified by a national survey. The Life Satisfaction (LS) national indicator for Luxembourg is 7.9/10, while in Canada it stands at 7.7. Caregivers with a LS level ≤ 7 were more likely to care for survivors affected by motor, sensory and memory neurological impairments. For a great majority, these impairments led to serious upheaval among families, and for spouses it was "a drama." For family caregivers with a least life satisfaction, their lifestyle poses a real health risk for the public health system.
Cerebrovascular diseases are an important public health policy concern because of their high prevalence and the long-term disability that survivors often experience; it is the principal acquired cause of handicap, and one of the most common causes of death in countries such as Luxembourg and Canada (WHO 2010). In the present economic climate, in which costly in-patient rehabilitation is giving way to home-based healthcare (Jungbauer et al. 2008), lifestyle-related risks (Massé 2007), as well as the positive experiences of home caregivers (Han and Haley 1999), require investigation. Stroke patients and family caregivers tend to have a relatively short time to get used to their new situation (Green and King 2007), in which the unexpected health circumstances and specific family issues affect satisfaction with life as a whole (Bergstöm et al. 2011). For Frohlich and Poland (2006), lifestyles reflect the interrelations between orientations, resources and health behaviours adopted by groups of individuals in response to their social, cultural and economic environment.
In Canada, nearly half of family caregivers of stroke patients are at risk of developing psychological and social issues (Teasell et al. 2009). These individuals, who have suffered lasting changes as a result of cerebrovascular disease, are significantly challenged to maintain high life satisfaction, defined as a global measure of the degree of discrepancy between individual aspirations and achievements, or general contentment. The Conference Board of Canada (2013) and the European Foundation for the Improvement of Living and Working Conditions (2010) find the monitoring of the social progress of citizens, as well as their position in society, to be important in informing public health policies. The Grand Duchy of Luxembourg is one of the smallest countries in Europe, yet has a very high gross domestic product (GDP) per inhabitant ($ 107,476 vs. $ 52,219 in Canada) (World Bank 2012). Along with Canada, Luxembourg is among the top countries in terms of life satisfaction, with a score of 7.9 (Conference Board of Canada 2013; European Foundation 2010). A recent study showed that, two years post-stroke, family caregivers’ life satisfaction was positively associated with survivors’ quality-of-life dimensions of feelings (less independent, life changed, depressed, useless, less control because of stroke) and emotion (get more emotional, fear of another stroke or of becoming dependent on others), and with their own quality of life (Baumann et al. 2012b). Life satisfaction after a stroke has been considered a significant issue in rehabilitation for care recipients (Low et al. 1999) and also for family members.
Taking a micro-sociological approach, we intended to explore whether home care for stroke survivors is a good idea if the repercussions create a lifestyle that represents a health risk for family caregivers. If the needs, resources, skills and will of the family caregivers for "taking care of the other" are hardly taken into account, the questions for the future are: How can the physical and psychological exhaustion of family caregivers be prevented? How might this change be approached in a positive way, as for instance, with innovative initiatives, involvement of the private sector or other forms of support, or services for caregivers that include opportunities for exchange of competences and resources?
Caregivers who have low life satisfaction also have lower health-related quality of life, a greater prevalence of stress and depression, more economic problems and an impoverished social life (Brännholm et al. 1996). As with the interconnectedness of other couple-related factors, such as emotional well-being, the quality of a couple’s interpersonal relationship and the way they cope together with life problems are positively associated with the life satisfaction of each partner (McCarthy et al. 2011). Studies have shown that couples who are dissatisfied with life perceive a greater level of caregiving burden compared to couples in which both spouses are satisfied (Ekstam et al. 2010).
During the first year post-stroke, spouses caring for male survivors reported lower life satisfaction (Forsberg-Wärleby et al. 2004) and were more often depressed than women caregivers generally (Berg et al. 2005). In addition, spouses or companion caregivers faced with physical, psychosocial and emotional problems are more exposed to burnout, particularly if they are women and if they are older (Navaie-Waliser et al. 2002). Women believe that their families let them care alone for the stroke-patient relative, making it difficult to find relevant help, which would in turn have a considerable impact on their own health (Bucki et al. 2012).
Factors already identified as associated with low caregiver life satisfaction include care recipient with physical and cognitive impairments (Forsberg-Wärleby et al. 2004), a decline in the caregiver’s health due to caregiving demands (Forsberg-Wärleby and Möller 2001) and couples failing to adapt to the post-stroke situation at home (Green and King 2007). For example, one year post-stroke, life satisfaction was found to decline for patients (because of motor impairments, limitations in daily activities and post-event depression) and increase for those family caregivers who reintegrated into normal patterns of living and gained confidence in their healthcare work (Ostwald et al. 2009).
Studying individuals two years post–cerebrovascular disease creates an opportunity to gather valuable information on the survivor–caregiver dyad over time. In the chronic phase, patients and their family caregivers may have reorganized their daily lives and become accustomed to caregiving. Some studies of home-based stroke healthcare showed that caring for patients has an impact on family caregivers’ life satisfaction, and analyzed the stroke-related impact on the patient–caregiver couple relationship (Green and King 2007) and the factors associated with caregiving that affect spouse–caregivers’ life satisfaction (Carlsson et al. 2007; Ostwald et al. 2009).
The strength of our project relies on the application of a self-assessment instrument to measure life satisfaction, as previously used in quality-of-life surveys, as well as the impact of the stroke on social lives and the experience of the caregiving role. Our aim was to determine the emotional and social repercussions of stroke on family caregivers with low life satisfaction, their sociodemographic characteristics and the associated neurological impairments of the survivors two years after cerebrovascular disease.
Methods Participants and procedures Over a period of 18 months, all stroke survivors (797 patients) admitted to all hospitals in Luxembourg and living at home two years post-stroke were identified from the Inspection générale de la sécurité sociale, the only relevant national database (see Figure 1).
We sent a letter to 374 patients who lived at home, explaining the aims of the survey and inviting them to participate. The consents of the main family caregivers were obtained when the research teams went to the stroke survivors’ homes to undertake the survey. After receiving each patient’s signed informed consent, the research team telephoned to make an appointment at the patient’s home with the main caregiver whom he or she had identified as "the person who mostly takes care of [the patient] since the stroke event."
As Luxembourg is a multilingual country, our questionnaires were written in five languages. Most of the instruments were already validated in French or English. The German, Portuguese and Luxembourgish versions were translated, back-translated and proofread by native-speaking professional translators.
Data collected from patients The Life Satisfaction (LS) Scale provides a subjective appraisal by asking respondents to self-rate their LS: "On a scale of 1 to 10, where would you place your level of satisfaction with your life?" (10 being the highest level).
Neurological impairments and residual disabilities, as formulated by the American Heart Association Stroke Outcome Classification (AHA.SOC), is a validated system that synthesizes stroke-related problems in single summary scores (Kelly-Hayes et al. 1998). Deficiencies were documented in motor, sensory, vision, cognition, language function, continence and memory abilities, and in personality disorder.
Sociodemographic characteristics (see Table 1) were collected for mean age, sex, educational level, occupation at the time of stroke and current occupational status.
Table 1. Sociodemographic and stroke-related characteristics: mean (standard deviation) and percentage LS groups of family caregivers Patients n=62 Family caregivers n=62 LS ≤7 n=31 LS >7 n=31 Age 64.4 (15.8) 59.3 (13.7) 59.1 (12.2) 59.3 (15.1) 0.962 Sex Women 40.3 65.6 75.9 55.2 0.167 Men 59.7 34.4 24.1 44.8 Relationship with survivor Spouse/Partner – 82.3 79.3 92.6 0.254 Child/Other – 17.7 20.7 7.4 Educational level Under 12 grade 44.4 42.4 48.3 34.5 0.424 12 grade and above 55.6 57.6 51.7 65.5 Occupation at the time of stroke Never employed 20.4 17.5 21.4 14.3 0.328 Manual worker 22.2 14.0 21.4 7.1 Employee/Intermediate professional/Technician 35.2 49.1 42.9 53.6 Manager/Liberal profession 22.2 19.3 14.3 25.0 Occupational status, two years post-stroke Working 19.6 35.6 31.0 42.9 0.650 At home without activity 23.2 30.5 32.1 24.1 – Retired 57.1 33.9 37.9 32.1 – Current AHA.SOC impaired functions and disabilities Motor 43.5 65.5 27.6 0.008** Visual 22.6 27.6 20.7 0.760 Sensory 53.2 69.0 41.4 0.064§ Language 32.3 41.4 27.6 0.408 Memory 38.7 55.2 27.6 0.061§ Personality disorder 22.6 31.0 17.2 0.358 Incontinence 14.5 20.7 10.3 0.470 p: Significance level (§ ≤0.1; * ≤0.05; ** ≤0.01; *** ≤0.001). 1 For unemployed and retired people as well as for those in vocational training at the time of the event, the last occupational activity was recorded. 2 American Heart Association Stroke Outcome Classification (AHA.SOC) (Kelly-Hayes et al. 1998).
Data collected from family caregivers With regard to life satisfaction and socio-economic characteristics, the same tools and procedures as for the survivors were applied; information about the relationship with the care recipient (i.e., spouse/partner or other) was added.
The experience of caregiving (see Table 2) was gauged using the items of the Caregiver Reaction Assessment instrument (Given et al. 1992 for the English version; Antoine et al. 2010 for the French version), which explores caregiver esteem, lack of family support, financial strain, impact of caregiving on scheduled activities and health problems.
Table 2. The experience of caregiving (%) Life satisfaction LS ≤7 LS >7 Caregiver’s esteem I really want to care for him/her. 65.2 63.6 0.330 I feel privileged to care for him/her. 87.0 95.2 1.000 I enjoy caring for him/her. 65.2 90.5 0.113 Caring for him/her makes me feel good. 65.2 71.4 0.325 Caring for him/her is important to me. 87.0 90.5 0.609 I will never be able to do enough caregiving to repay him/her (reversed). 34.8 47.6 0.556 Lack of family support I resent having to care for him/her (reversed). 13.6 4.8 0.421 It is very difficult to get help from my family in taking care of him/her. 21.7 0.0 0.081§ Since caring for him/her, I feel my family has abandoned me. 13.0 0.0 0.103 My family (brothers, sisters, children) left me alone to care for him/her. 45.5 23.8 0.402 My family works together at caring for him/her (reversed). 34.8 71.4 0.007** Others have dumped caring for him/her onto me. 30.4 22.7 0.806 Impact on finances It is difficult to pay for him/her. 8.7 4.8 0.288 Financial resources are adequate (reversed). 78.3 71.4 0.247 Caring for him/her puts a financial strain on me. 8.7 0.0 0.037* Impact on schedule I have to stop in the middle of my work or activities to provide care. 34.8 4.8 0.030* I have eliminated things from my schedule since caring for him/her. 47.8 9.5 0.021* My activities are centred around caring for him/her. 59.1 31.8 0.225 I visit family and friends less since I have been caring for him/her. 54.5 14.3 0.021* The constant interruptions make it difficult to find time for relaxation. 39.1 9.5 0.074§ Impact on health It takes all my physical strength to care for him/her. 73.9 71.4 0.092§ I am healthy enough to care for him/her (reversed). 82.6 81.0 0.120 My health has gotten worse since I’ve been caring for him/her. 23.8 4.8 0.257 Since caring for him/her, it seems like I’m tired all the time. 56.5 14.3 0.013* p Significance level (§ ≤0.1; * ≤0.05; ** ≤0.01). Percentages indicate the proportions of respondents who "completely agree" or "agree."
Family and couple relationships (see Table 3) were assessed based on a previous qualitative study (Baumann and Aïach 2009). The items covered were disruptions within the family relationship and changes in the distribution of roles within the couple.
Table 3. Social and couple relationships (%) Life satisfaction LS ≤7 LS >7 Family relationships The stroke has brought serious upheaval to my family. 82.8 51.7 0.024* Some time after the stroke event, my family worked together in taking care of the stroke-affected person. 81.5 78.6 1.000 The stroke has strengthened family bonds. 68.0 69.0 1.000 Social isolation The bonds between us (relatives, friends) remained as they were before or are stronger. 75.9 93.1 0.144 We have lost many friends. 10.3 10.3 1.000 Social life goes on as before. 58.6 96.6 0.001*** Now we are ashamed of seeing our friends. 6.9 0.0 0.491 Disruptions within the couple relationship The stroke brought serious upheaval to us as a couple. 57.1 25.9 0.029* I have perceived the stroke as a drama that my couple relationship could not overcome. 54.2 7.4 0.000*** The stroke has meant the end of plans for the future that we had as a couple. 45.8 11.1 0.011 When a couple’s relationship is already conflictive, a stroke worsens it. 31.8 48.0 0.373 A stroke brings changes to a couple’s relationship. 45.8 34.6 0.565 Stroke often puts a distance between our children and us. 23.1 0.0 0.010* Distribution of roles within the couple I am more in charge of the housekeeping, cooking and shopping. 24.0 4.0 0.111 I take care of the administrative affairs now. 16.0 15.4 0.540 I organize the holidays and the leisure time now. 8.7 4.2 0.040* I am more in charge of our relationships with professionals (health professionals, cleaning professionals, etc.). 33.3 36.8 1.000 I have more household responsibilities. 38.1 10.5 0.069§ The responsibilities are shared as before. 79.2 81.5 0.000 I cannot leave the stroke-affected person alone for too long. 60.7 17.2 0.001** p Significance level (§ ≤0.1; * ≤0.05; ** ≤0.01).
Percentages indicate the proportions of respondents who "completely agree" or "agree."
Statistical analysis According to the mean Luxembourg LS value (7.9), two groups were built: one with the respondents having a LS ≤7 versus the other with a level >7. Quantitative variables were compared using the Student’s t-test or the Mann-Whitney test, and the categorical variables using the Fisher’s exact test. Percentages indicate the proportions of those answering "completely agree" or "agree."
Results The participation rate was 94/374 = 25.1% (Figure 1). Comparisons between the sociodemographic characteristics (age, gender, nationality, place of residence, number of admissions to hospital) of the study sample and the general population of stroke victims showed no differences. Among the 94 patients (mean age 65.5 years), 32 had no designated caregiver (67.6 years) and 62 had a family caregiver (64.4 years) (Baumann 2012b).
Socio-economic and stroke-related characteristics Two groups of 31 family caregivers (average age 59.3 years; on average, 5 years younger than the patients they cared for) were obtained. More family caregivers with a LS ≤7 cared for stroke patients affected by neurological impairment of motor abilities (66% vs. 28%, including speech and swallowing, muscle power and tone, reflexes, balance, gait, coordination and apraxia), sensory deficits (69% vs. 41%, including loss of primary sensations or perception, numbness, tingling or altered sensitivity) and memory-