Experiences of “endless” caregiving of impaired elderly at home by family caregivers: a qualitative study

BACKGROUND: In Japan, the care burden for elderly requiring care is a serious social issue due to increasing life expectancy and the resulting need for long-term care. We qualitatively described how caregivers dealt with the prolonged caregiving and incorporated caregiving into their lives. We also explained the process of “everlasting caregiving” among primary long-term family caregivers at home. METHODS: Data were obtained from semi-structured interviews conducted in Japan from 2009 to 2011 about caregiving experience with 23 primary caregivers of care recipients. The grounded theory approach was applied for data analysis. RESULTS: In this study, caregivers perceived their caregiving as everlasting. In particular, when care recipients stayed alive or when caregivers suffered from diseases, caregivers were not determined to be “unable to perform caregiving.” However, when they undertook caregiving, they thought of it in a finite sense. As a result, caregivers feel that they endure caregiving for an endless period. The long-term period of caregiving was divided into two phases, depending on whether caregivers realized the finiteness of caregiving or not. We identified five categories for surviving caregiving in these two phases as follows: Addition of a positive meaning of the use of caregiving services, Management of the use of caregiving services under the initiative of the caregivers, Receiving assistance that can be accomplished without making considerable changes in the lifestyles of family members and relatives, Obtaining available assistances as necessary provided by neighbors and friends, and Re-definition of caregiving needs. This process was named “Handling of the amount and quality of care: surviving strategies for the endless caregiving of impaired elderly at home.” CONCLUSIONS: In this study, caregivers carried out long-term caregiving, but not without struggles. Caregivers could continue their caregiving due to initiative, maintaining the role of primary caregiver. Family members and relatives respected caregivers’ individuality and decisions. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13104-015-1829-x) contains supplementary material, which is available to authorized users.