Changes in social participation and life-space mobility in newly enrolled home-based rehabilitation users over 6 months.

[Purpose] This study aimed to examine whether we were able to measure changes in social participation and life-space mobility of newly enrolled home-based rehabilitation (HR) users by using the activities and participation components of the International Classification of Functioning, Disability and Health (ICF) and Life-Space Assessment (LSA) over a 6-months period. [Participants and Methods] We enrolled 47 HR users who had suffered from a stroke or other condition within the previous year. A 6-month prospective cohort study was conducted. The performance qualifiers "d6 domestic life" and "d9 community, social and civic life" in the activities and participation components of the ICF and LSA were used. [Results] We observed significant improvements in the performance qualifier "d9 community, social and civic life" of the ICF over 3 months, and the LSA over a 6-months period. We also identified significant improvements in "d910 community life" and "d920 recreation and leisure" of the ICF. The LSA results showed that HR users had more frequent mobility within the neighborhood. [Conclusion] This study showed that newly enrolled HR users improved their social activities in the community, recreational activities, and life-space mobility over a 6-months period. These were measured using performance qualifiers from the ICF and LSA.

[The impact of support from medical professionals on families' decision-making during end-of-life care].

Families are involved in decision-making regarding end-of-life (EOL) care in Japan. However, how support from medical professionals toward families' decision-making affects families' satisfaction with EOL care has not been adequately studied. We aimed to examine the impact of support from medical professionals considering the care recipients' preferences on families' overall satisfaction with EOL care and the mediating effect of fulfilling care recipients' preferences.We administered self-report questionnaires through home-nursing providers to bereaved families (n=753), who lost loved ones between April 2015 and March 2016. Analyses were conducted with 237 of these bereaved families whose loved ones had been ≥65 years old, and had no missing values in key variables. We asked whether the families had received any support from medical professionals in determining the care recipients' EOL preferences, in discussing how to honor the care recipients' own interests, and in supporting the families' decision-making. We also collected data measuring the overall satisfaction with EOL care, families' perceptions that the care recipients' preferences were honored during EOL care, and demographic characteristics of care recipients and caregivers.Data from 58 male and 179 female family members were analyzed. The average age was 65.8 (standard deviation [SD]=11.9) years. Care recipients were 113 men and 124 women, and their average age was 83.0 (SD=9.1) years old at the time of death. A path analysis revealed that support for families from medical professionals was related to families' satisfaction with EOL care through the mediating factor of fulfilling care recipients' preferences.Support from medical professionals considering care recipients' preferences will help families' involvement in EOL decision-making.

[Factors related to parent-child communication about end-of-life care -A survey of adult children with an elderly parent].

AIM: In Japan, because adult children are expected to perform a key role in decision-making on end-of-life care for older adults, conversing with parents on their wished-for end-of-life care can help these children to become prepared for this filial responsibility. Our aim in this study was to explore how likely Japanese adult children were to discuss end-of-life care with their parents as well as correlates of such discussions. METHODS: We conducted an online survey using a sample of 1,590 adult children with at least one living parent aged 65 or older. We analyzed data from 1,010 children who responded during three consecutive days in October, 2015. RESULTS: A small portion of our participants (22.8%) had discussed end-of-life care with their parents. Logistic regression analysis revealed that such discussions were likely in son-mother (Odds Ratio 〈OR〉 = 3.01) and daughter-mother (OR = 3.15) dyads compared with son-father ones as the reference. Occurrence of such discussions was also associated with having older parents (OR = 1.03), parental experience of severe diseases (OR = 1.47), parent-child coresiding (OR = 2.08), a higher level of perceived necessity for (OR = 1.36) and a lower level of emotional avoidance of (OR = 0.68) end-of-life communication. CONCLUSION: Generally, adult children rarely discuss end-of-life care with their aging parents, suggesting the need to promote such familial communication while considering both children's and parents' circumstances.

Verbal communication of families with cancer patients at end of life: A questionnaire survey with bereaved family members.

OBJECTIVE: To clarify the verbal communication of feelings between families and patients in Japanese palliative care units from the perspective of bereaved family members by examining (1) proportions of families' and patients' verbalization of six feelings (gratitude, love, seeking forgiveness, giving forgiveness, wishes after death, and continuing bonds), (2) recognition of receiving these feelings through verbalization from the family's perspective, and (3) the specific attitudes of family members that influence their verbalizations. METHODS: In 2010, a cross-sectional survey was conducted with 968 bereaved families of cancer patients in palliative care units across Japan. RESULTS: Five hundred thirty-seven responses were analyzed. (1) "Gratitude" was verbalized most often (families: 47%; patients: 61%), and "expressing forgiveness" least often (families: 16%; patients: 11%). (2) Even if the words were not used, 81.2% to 88.2% of families answered that they had received the patient's feelings, and 71.8% to 85.4% of families felt the patient had received their feelings. (3) Multiple logistic regression analyses indicated that the strongest attitudes determining verbalizing were "not wanting to say farewell without conveying feelings," "a daily basis of expressing," and "heart-to-heart communication" (ishin-denshin). CONCLUSIONS: For both families and patients, verbalizing feelings was difficult. Our results showed that families' and patients' verbalizing and receiving of feelings must be aligned to understand their communication at the end of life in Japan. Future research is needed to verify how attitude helps promote or inhibit verbalization.

Reconsidering long-term care in the end-of-life context in Japan.

In this article, we propose expanding the scope of long-term care such that it involves caring for dying individuals; that is, end-of-life care. In doing so, we identify challenges that families and care/medical professionals face in attempts to design and provide end-of-life care under Japan's societal contexts. Because of the difficulty judging whether an individual is in an end-of-life phase, as well as a growing number of older adults who are unable to communicate their care preferences as a result of cognitive impairment, efforts were almost automatically made to prolong older patients' lives. To respect patients' desires and values, communication among older adults, their families, and care/medical professionals has been increasingly encouraged to make a mutually agreeable end-of-life care decision. At the same time, older adults are expected to indicate their care preferences earlier because their ability to express their ideas should be limited when approaching the end-of-life phase. We thus suggest including advance care planning in the course of long-term care such that older adults, with the help of care/medical professionals, can tell their preferences to their families, who are required to serve as surrogate decision makers in Japan. Our research, however, has shown that Japanese older adults are hesitant to discuss end-of-life issues with their families. On the basis of our findings suggesting older adults' concern that they might make trouble for their families by clarifying their care preferences, we discuss how care/medical professionals should facilitate family discussions on end-of-life care.

[Communication with important others regarding their preferences for end-of-life care].

AIM: Our aim in this study was to explore individual factors that make it likely for Japanese older adults to engage in communication with important other persons regarding their preferences for end-of-life care. METHODS: We conducted a questionnaire survey of outpatients at Tokyo Metropolitan Geriatric Hospital in the last six days of March 2012. Nine-hundred and sixty-eight outpatients consented in writing to participate in this survey. Two items on the questionnaire concerned the participants' attempts to communicate their preferences regarding end-of-life care; that is, whether they had discussed this issue with their significant others and whether they had written notes indicating how they want to be cared for in the final days of their lives. RESULTS: The participants who had designated a surrogate decision-maker were more likely to report answers of both than only discussion (OR=2.52) and less likely to reports answers of no communication than only discussion (OR=0.37). In addition, (a) those who did not wish to rely on artificial nutrition or hydration (OR=0.68) and (b) those who often thought about their death were more likely to be in the only discussion group than in the no communication group, although these factors were not significantly associated with whether the participants were likely to be in the both or only discussion groups. CONCLUSIONS: Our findings indicate that individuals often attempt to clarify their preferences in order to make it easier for their significant others to make end-of-life care decision on their behalf, so that they may receive their desired care.