The present study compared life satisfaction, coping strategies, grief reactions, and purpose and meaning in life of 81 relatives of DOC patients who either cared for their patients at home (n = 37) or have them taken care of in a specialized institution (n = 44). Despite diligent literature search, we found no other study addressing this question, neither for DOC patients, nor in other pathologies. However, studies on caretaker burden caused by dementia, stroke, and other pathologies assume that nursing home placement is a last resort to unburden overwhelmed caretakers [21,22,23,24]. This assumption is already called into question by a study on dementia, which indicated that the unburdening effect of nursing home placement might not be as extensive as suggested .
Furthermore, previous research into the burdens of DOC caretakers were performed on caretakers who have already made the decision of nursing home placement. This might reflect the problem of contacting home care caretakers since there are no public registries of any kind for these patients. This makes it extremely difficult to reach a sizeable group of home care caretakers, which might also explain why prevalence studies likewise focus on clinics, rehabilitation centers and nursing homes.
Therefore, our study is, to the best of our knowledge, the first to compare the burdens arising from different types of care for DOC patients by including a home care caregiver group.
In sum, as expected, both caregiver groups differed from the norm values on the following scales: a generally reduced life satisfaction with especially reduced spare time, long lasting grief reactions as well as enhanced crisis of meaning. However, there were very few differences between the two caregiver groups. They scored fairly similarly on all used scales with the three significant exceptions of enhanced self accusation for caretakers with patients in specialized units (Fig. 2) as well as the two findings of reduced individualism and freedom for home caretakers (Fig. 4). There were also slight differences in the satisfaction with one’s own health in the FLZ (with specialized units caretakers being more dissatisfied and the mean of the group being below 4; Fig. 1 and Additional file 1: Table S1) and self accusation from the SVF (again more pronounced for specialized units care takers, Fig. 2 and Additional file 2: Table S2).
In detail, for the life satisfaction scale, in our sample 46% of home care caregivers and 54.5% of those with patients in specialized units reported low general life satisfaction scores. On the different sub-categories of the FLZ, both caregiver groups reported too little leisure time, whereas especially the caregivers with patients in specialized units were more dissatisfied with their own health. The first fits well with the literature where the most common reasons for reduced life satisfaction are the lack of spare-time . However, we initially expected a more pronounced self-reported lack of spare time for home care caregivers since home care-giving is very time consuming. This was not reflected within the FLZ data; however, we found a reduction of the ‘individualism’ and ‘freedom’ scale of the LEBE, basically describing a lack of opportunity to pursue own interests for homecare caretakers. This is in line with the fact that in our sample many home care caretakers described themselves as being around the patient 24 h a day (mean 20 h). On the other hand, caregivers with patients in specialized care institutions were also rather unhappy with their spare time. We expected institutionalized care to unburden family caregivers, providing them with the opportunity to have and enjoy ‘spare-time’. However, it seems that regardless of the accommodation, caregivers spend as much time as possible with the patient. In our data, caregivers, who have the opportunity to do so, even after several years seem to spend the majority of their day with the patients. In our data, two ‘groups’ emerged where unemployed or retired caregivers reported spending the whole day with the patient and those employed reported spending several hours with the patients. This is well in line with results from Leonardi et al.  who also reported that about 50% of 487 caregivers with patients in an institution spend three or more hours a day with their patients over a period of many years. So it seems that, as a result, both care-giving groups are more or less equally unhappy with the amount of spare time they have. In our data, as well as in the literature , the lack of spare time seems to have a major effect on general life satisfaction. Since it is equally reduced for both caregiver groups, it would be important for family physicians, support groups and institutions to stress the importance of self-care in order to improve life satisfaction and prevent clinically relevant burn-out symptoms.
A second, rather unexpected result, is that especially those caregivers with patients in institutions were unsatisfied with their own health. Actually, we would have expected the home care caregivers to report more physical strains, since the care for an adult bedridden patient is very challenging. However, since we have no means to estimate when the health issues become prominent, this could very well be a pre-existing feature. Maybe caregivers with health concerns were more likely to seek institutionalized care for the patient from the beginning since they might have anticipated to be overstrained with care duty. This notion would be in line with a large study of 580 caregivers of dementia patients, demonstrating that poor health of the caregiver is one of the leading causes of nursing home placement . Here, a longitudinal study, starting even before the accommodation decision for DOC patients, would be very beneficial. It would not only be possible to describe the situations which actually lead to the choice of care in more detail, it would also be informative to see how satisfied caregivers are with that decision in the long run. Additionally, it would be possible to analyze the situational and personal factors predicting this satisfaction, enabling clinicians to improve their advisory service.
On the other hand, neither group reported to be unsatisfied with their social integration, which was suggested to be one of the major problems in previous literature [17, 32]. Here, we expected caregivers to have a better social integration if their patient is taken care of in an institution, since institutions provide the opportunity for social contacts with others in the same situation. Of course, a support group would have the same effect for home care caregivers. However, as a limitation of this study, we did not ask home care caregivers if they attend a support group but since we spread the online-version of this study, besides other ways, also via support group websites, it is reasonable to assume that at least some of the home care caregivers are members of such groups. So, the absence of any differences regarding social integration may be an effect of a self-selection bias where the really isolated home care providers would not know about the study and/ or did not find the time to answer our questions.
The questionnaire on coping strategies (SVF) revealed no difference between the two caregiver groups in the use of general adaptive and maladaptive strategies. Furthermore, on average, no category of strategies was used more or less frequently than by the norm group. From the primary scales, the most frequently used maladaptive strategy was self-accusation, which actually differs significantly in use between the two caregiver groups. In tendency, there was also a difference in the occurrence of self-pity which might be related to self-accusation. It was again more common for caregivers with patients in specialized institutions. Stern et al., , as well as Cipolletta and colleagues  also reported, that families tend to react with serious feelings of guilt, if the patient is seen as ‘abandoned’ (taken care of in an institution). This guilt could be the reason for enhanced self-accusation in caregivers whose patients are taken care of in a specialized unit. Additionally, the same mechanisms could be the reason for the enhanced self pity: Although research on self-pity is scarce, Grunert for instance  pointed out that self-pity could be interpreted as a self-defense mechanism. It occurs whenever a person feels shame and aggression but cannot act on it. It is argued that guilt can lead to (self)-aggression (which has been reported to occur in DOC caregivers with patients in institutions ) as well as self-accusation , which in turn could transform into self-pity - a feeling easier to cope with and, given the caregivers’ situation, maybe more socially accepted. Initially, self-pity might very well evoke empathy from others ; however, a pervasive display of self-pity will not . So, self-pity could, in the long run, contribute to social isolation and family strains.
Here, the consultation and approval of an accepted authority seems to be one way to counteract the guilt related with nursing home placement. It seems that the consultation with an authority, usually a medical doctor, confers some kind of legitimization to the decision. For instance, caregivers of elderly persons who made the decision of nursing home placement and did not discuss it with a professional viewed their decisions most negatively . To have the approval of a professional medical practitioner seems to somewhat prevent the ambivalent emotional feelings toward this decision and can minimize the feelings of guilt , which otherwise can lead to long lasting maladaptive behavior of the caretaker, such as making up to the patient by spending every available time at the institution at the expense of own health, potentially even leading to self-abandonment .
On the positive side, very few caregivers scored below the norm in the use of adaptive strategies. So, a general lack of adaptive strategies in long term caregivers of UWS patients in institutionalized care, as reported by Cipolletta et al.  cannot be confirmed in our sample.
For the grief questionnaire (TF), the sum scores of the caregiver groups indicated that both groups grieve less than the acutely grieving norm group. Yet, on the single caregiver level, it becomes obvious that most of the caregivers (34 (77.3%) with patients in institutions and 28 (75.7%) home-care caregivers) still suffer from severe grief symptoms (above or within one standard deviation of the norm-mean). This result is in line with Boss , describing the ambiguous loss as a long lasting state, which is hard to bear. Arising from this situation are mixed feelings of mourning and hope, with the latter preventing the former from fully being processed and adapted to. However, on the positive side, both caregiver groups reported high values on the scale ‘inner strength and personal growth’. This scale contains 10 items like ‘I can show more compassion to others now’, ‘I am more tolerant to others now’, or ‘I reached a point where I can begin to let go of some of the grief’. As Christopher put it, a significant experience has the potential to change a person  and although most of these changes might be for the worse, there could also be changes in the world view of the person, that might foster individual growth. In fact, the positive potential that could arise from a situation like care-giving , receives far too little attention within the research of consequences of care-giving so far.
In the LEBE, we found high values in crisis of meaning for caretakers, as expected slightly more pronounced for those with patients in specialized institutions. Here, we assume that taking care of the patient at home can actually somewhat protect from the crisis by offering some new meaning in life. For example, caretakers of Alzheimer’s patients sometimes report finding a new meaning in life through the feeling of being needed by the patient [19, 34]. Therefore, the process of redefining the meaning in life seems to be somewhat more challenging for caretakers with patients in specialized institutions. This demonstrates that even years after the event caretakers struggle to ascribe meaning to the situation. This struggle seems more pronounced for caretakers who do not experience themselves as crucial for the wellbeing of the patient. Additionally, since the patients are incapable of demonstrating whether or not they are aware of, or grateful for, their caretakers’ sacrifices, family members are more prone to doubt the usefulness of all their efforts. That home care caretakers struggle a bit less with a crisis of meaning might also reflect itself in the result that in our sample, with time, life satisfaction actually increases significantly for this group but not for caregivers with patients in institutions. This indicates that institutions and support groups alike should address these questions in order to give caregivers a space to discuss their doubts, which might help them to find a new and maintainable balance between their own life and patient care.
In general, a positive result of this study is, that, for the whole group of caregivers, the situation seems to become more bearable over time. Life satisfaction actually increases as the caregiving continues and does not deteriorate, as reported in other studies. Whether this is because our sample manages to juggle a satisfying social live with care duty or because family strains and financial problems are not as pronounced in our sample as in other samples [12, 14, 17] presently cannot be answered .
Lastly, it is important to note that there are some limitations to this study. For one, it is very difficult to recruit homecare caretakers, which might explain why no previous research has studied them so far. As described earlier, we spread the link to the online version of the study via Facebook-Groups, support groups, the journal ‘Not’ and clinical contacts. However, this implies that we might have only reached those that are actively searching information in the internet or are organized in some kind of DOC (or similar) support group which might have provided them with the online link or the paper and pencil version of our study. This may have led to a selective group of DOC caretakers, where we did not reach those that are truly isolated. Additionally, the length of the questionnaires might have further fostered this effect. It might have added to a selection bias by only including those who were willing to spend about an hour of their time on our research. This might have excluded the most heavily burdened caretakers, regardless of the type of care and might help explain the generally moderate findings of our study. Therefore, further research should aim to find a different method to reach especially those caregivers ‘buried’ in their daily duties in order to include them into the study to specify caregiver burden. Furthermore, group sizes might have limited the statistical power to detect differences between groups, although effect sizes for the between-group comparisons were rather low, suggesting that in the absence of systematic distortions in the two samples, larger sample sizes alone may not change the pattern of results. Based on the present results, future studies could focus on fewer problem areas of interest and implement a shorter survey in order to prevent dropouts and therefore reach higher sample sizes. In fact, several participants send us feedback via Facebook, complaining that standardized questionnaires did not adequately capture their situation, stating that they discontinued the survey for this reason. Here, structured or semi-structured telephone interviews have proven to be effective tools to reach large cohorts of participants . In larger cohorts it would also be very interesting to further distinguish between the reported burdens for different family members. It is intuitive to assume that the felt burden would differ for a spouse caring for his/her wife/husband, compared to parents caring for a child. However, due to current sample sizes, such a distinction could not have been made in this study.
Given the possible self-selection bias of our study, our results could actually underestimate the burden of both caregiver groups. Such an effect could be more pronounced for home care caretakers. On the positive side, results demonstrate that, in relation to overall prevalence estimates, a considerable number of both homecare and institutional caretakers of DOC patients could be reached, and many of those manage to adapt to the situation and in many respects maintain or regain psychological and physical health. In particular, the study suggests that home care does not need to be a dead-end leading to physical and mental breakdown. Future studies should further specify the mechanisms that promote individual well-being in caretakers and help prevent dysfunctions that can quickly become costly on an individual and societal level.