Abstract
BackgroundIn 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.MethodsData 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.ResultsIn 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.”ConclusionsIn 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 materialThe online version of this article (doi:10.1186/s13104-015-1829-x) contains supplementary material, which is available to authorized users.
Highlights
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 investigated how the family members who carried out caregiving accepted such changes, how the newly accepted role was integrated into the daily lives of caregivers, and how the lives of the family members in charge of caregiving were restructured if the duration of the situation was prolonged
A core category and five relevant categories were extracted: Addition of a positive meaning of the use of caregiving services, Management of the use of caregiving services, Receiving caregiving 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 (Table 2)
Summary
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. Population aging with a low rate of total fertility has been accompanied by a rapid increase in the number of Sakakibara et al BMC Res Notes (2015) 8:827 aged 65 years and older live in hospitals. The government started a new policy called the Gold Plan, or Ten Year Strategy for Health and Welfare of the Elderly, which set a specific target of doubling institutional beds and tripling home and community-based services for older people over 10 years. In the mid-1990s, the Ministry of Health and Welfare developed a plan to provide long-term care through social insurance to deal with these issues [2]
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