A problem shared is a problem halved? Comparing burdens arising for family caregivers of patients with disorders of consciousness in institutionalized versus at home care

BACKGROUND: Disorders-of-consciousness (DOC) are rare conditions leading to very severe physical and mental disabilities. Providing care for DOC patients has been described as a stressful experience, eroding the physical and psychological health of the caregiver. Different forms of care may have different impacts on the caregivers and institutionalized care has been suggested to have an unburdening effect, but this possibility has never been empirically studied. To address this issue, in this study caregiver-burden between family-caregivers who provide home care themselves and those who have placed their patients in a specialized care unit is compared. METHOD: The demographics of the caregivers, life satisfaction, coping strategies, meaning in life, and grief reactions were assessed with questionnaires in 81 long term (m = 7.9 years) caregivers (44 patients in specialized care-units, 37 patients taken care of at home). RESULTS: Caregiver groups were similar on the vast majority of demographic factors. Remarkably, there were no major differences in self-assessed burden and distress between the two caregiver groups. They both demonstrated generally reduced life satisfaction, were especially dissatisfied with their amount of spare time, and many caregivers in both groups demonstrated long lasting grief reactions, as well as a somewhat enhanced crisis of meaning. However, caregivers with patients in institutionalized care exhibited enhanced self-accusation as well as reduced satisfaction with their own health. Home care caregivers, on the other hand, report below average opportunities to care for themselves. CONCLUSION: Surprisingly, placement in institutionalized care in itself does not seem to disburden caregivers as much as expected as the amount of subjective care-giving burden and reported distress is on average similarly high, although profiles differ somewhat according to type of care. Moreover, vast inter-individual variability can be observed. Further research should address the mechanisms that foster positive adjustment and reduce negative impacts for care providers regardless of type of care, enabling the health care system, institutions and self-aid groups alike, to provide more specific support for caregivers by addressing the topics of quality-of-life, own health, self care, and grief reactions. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40359-018-0272-x) contains supplementary material, which is available to authorized users.