This study demonstrated that, two years after cerebrovascular disease onset, survivors’ life satisfaction was higher among women and lower among patients at home with no occupation (compared with retired people) and that family caregivers’ life satisfaction was affected by caring for patients with impaired memory function. It further showed that patients’ life satisfaction positively correlated with the five following Newsqol dimensions: feelings, sleep, emotion, cognition and pain, but did not correlate with any caregivers’ Whoqol-bref domain. Family caregivers’ life satisfaction was associated with patients’ feelings and emotion dimensions only. It was strongly linked with the four caregivers’ Whoqol-bref domains (physical health, psychological health, environment, and social relationships). Many patients suffered from impaired sensory function (44.7%), motor function (35.1%) and memory function (31.9%).
The main finding of our study at home is the similarity of associations of both patients’ LS and family caregivers’ LS with feelings and emotion stroke-related Newsqol dimensions. This suggests that strong psychological repercussions may be generated for both patients and family caregivers. If we intervene at the level of the determinants of QoL of patients, we would improve their satisfaction with regard to life. Using Newsqol revealed strong associations between four dimensions of pain, cognition, sleep and fatigue due to the stroke, and patients’ LS. This is of interest and not previously reported (in terms of stroke-specific QoL measures). Consequently, physical and psychological suffering as a repercussion of cerebrovascular disease needs to be assessed. The Newsqol appeared here as an appropriate tool to produce useful indicators to be considered in programs for stroke patients with disabilities
. Stroke-related upheavals can be minimised if professionals assist patients with a healthcare and social system which would provide preventive intervention with video, and psychosocial services using new IT technology (telephone, videophone, telestroke)
Our study revealed relationships of patients’ LS with occupational status and gender which also deserve attention. Gender may include both gender social role and sex (biological meaning). We observed that patients with no occupational activity had lower LS. Having a job was linked with moderate LS and retired people had the best LS. We have no definitive explanation for these findings, but some hypotheses arise. First, unlike people at home with no activity and despite their handicap, retired patients may have less stress or unhappiness and may maintain a social position/identity, which is based not only on age and social characteristics but also on individual’s sense of self
. Secondly, access to medical aids and rehabilitation activities, as well as healthcare and prevention, may be easier as retired people have more spare time than working people. Thirdly, participation in community activities to promote ‘health capability’ (health functioning and ability to achieve health goals they value and act as agents of their own health) may be easier among retied people
. These activities may improve ability to make relevant choices to promote better health. It may also help to avoid resentment and promote psychological strength and confidence in the future
. The fact that the LS was higher in female than in male patients calls for further research on severity, symptoms and potential risk factors such as health-related behaviours, nutrition, leisure, etc. A recent review of literature about stroke risk factors and warning signs reported that, according to most studies, women know more about cerebrovascular disease than do men in most studies
. Women are more likely than men to report non-specific "somatic" symptoms and to report changes in their mental status
. Our findings are not consistent with those of the European LS survey
, which reported small gender difference in various countries. However, this survey found that married people are more satisfied than those who are separated, divorced or widowed, and slightly more satisfied than single people in various country groups. In our dyads, most caregivers were women looking after spouses.
We found that caregivers of patients suffering from impaired memory had lower LS. This may reflect the repercussions of caring for patients with difficulties related to memory loss. Most neurological impairments concerned sensory and memory functions, but more survivors issued from our sample with a caregiver declared sensory and memory-related problems, and two or more domains impaired. Family caregivers had to cope with physical disabilities, but also psychological problems, making some of them exhausted. Home-based rehabilitation requires stroke patients and their caregivers to find new ways, within their families, to solve problems, communicate and deal emotionally with others. Individual or community interventions should redefine their resulting needs
. Our result brings to light some contrasting aspects of the literature which suggest that despite the socioeconomic differences between care settings, cerebrovascular disease is a life-threatening and potentially disabling event as well as an important family issue, particularly for spouses
. Under Swedish law, the repercussions for informal caregivers have been recognised by an amendment in 2009 which calls for assistance in order to minimize the physical and psychological strain on caregivers and caregiving burden. It also recognises the caregivers’ perspective in guiding interventions, such as support groups and home help. This implies that, within rehabilitation, the dyad could be viewed as one client, with the potential of benefitting from support
We further found that, in accord with previous studies
[7, 12, 15], LS was associated with the QoL among family caregivers. All QoL domains were involved: physical health, psychological health, living environment, and social relationship. In contrast, to that, we failed finding an association between stroke survivors’ LS and caregivers’ QoL. This result may be a bit surprising, but it supports the hypothesis that caregivers may not leave caregiving related to their own health-related issues. It may be noted that the LS of study patients and caregivers (7.1 and 7.2/10, respectively) was lower than the national LS indicator in Luxembourg (in 2007, 7.85/10), which was higher than that from the European Quality of Life Survey
 (7.0 for EU-27), but behind Denmark, Finland and Sweden.
Contextualising our findings poses a challenge for a number of reasons, in particular the economic situation (as regards Luxembourg’s gross domestic product per inhabitant), and the fact that Luxembourg is one of the smallest European countries (524.853 inhabitants (January 2012) area 2600 km2 ) and small distances between the population and the health systems. The care structures are thus geographically accessible for the whole population. The socio-demographic characteristics of the study patients (53.6% had an income of more than 36,000€ and 74.5% were of Luxembourgish nationality) also suggest that social and medical supports focussed on community professional-oriented services are easily available. Difficulties associated with maintaining inner-city medical practices
 and community-care provision vary substantially according to location and income. These factors also influence domiciliary care delivery: distribution of resources at local levels; financial constraints; and the application of eligibility criteria in providing medical and community services
Strengths and limitations
Among stroke patients, aphasic patients were also included in the study sample with appropriate training for researcher to communicate with them and specific interview protocol. As in the European survey the LS assessment was based on one question easy to routinely use. QoL was measured using two internationally accepted instruments: on the one hand, the Newsqol to measure specific issues of patients; and on the other hand, the Whoqol which is a good transcultural instrument appropriate for caregivers. Studying two-year post cerebrovascular disease is an opportunity to provide valuable information on patient-caregiver monitoring over time. Certain pathology may mimic stroke
. In addition, by two years post-stroke patients and their family caregivers may have adapted to their new situation, reorganised their daily lives, and become accustomed to caregiving
. Such a study protocol remains rare because it is very expensive, and it is not easy to organise a study 24 months after stroke onset. The participation rate is rather small but similar to recent literature (27%)
. Certain patients died, lived in institutions, changed their residence (for example with their son or daughter), or failed to respond.
Our study highlights that LS and QoL assessments are simple and may be used to identify cerebrovascular disease patients at risk and adverse health issues that may be targets for interventions in order to sustain long-term hospital discharged medical care. Home-based rehabilitation would improve in sustainability if patients and caregivers could benefit from a follow-up with assessment of medical, material, psychosocial, and information needs
. A telephone service by trained health and social professionals may help. Telestroke (for example with videoconferencing) may reduce stress, provide reassurance about secondary treatment effects, improve compliance with prescriptions, and give information about medical-social services
. Stroke-patients and family caregivers who participate in a problem-solving intervention group (face-to-face, family-adapted training at the caregiver's home and telephone counseling) improve their problem-solving skills and caregiving preparedness; they report better vitality, social functioning, mental health, and role limitations related to emotional problems
[49, 50]. Appropriate information may promote autonomy and decision ability. Patient-centred care needs effective collaboration between various professionals (psychologists, nurses, social workers, general practitioners, neurologists, etc.), patients, and their families. Our findings may be useful for policy makers to understand the family and medical-social contexts of stroke over time in order to design adequate health systems