Mami Kayama

Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan

OBJECTIVES The aims of this study are to describe the care burden on caregivers of individuals with intractable neurological diseases and to clarify the prevalence of depression in caregivers and factors related to the presence of depression. METHODS A cross-sectional survey was conducted among caregivers who provide home care to patients with neurological diseases such as Parkinson disease (PD), spinocerebellar degeneration (SCD), multiple system atrophy (MSA), and amyotrophic lateral sclerosis (ALS), using a mailed, self-administered questionnaire. We used the Burden Index of Caregivers to measure multi-dimensional care burden and the Center for Epidemiologic Studies Depression scale to determine the presence of depression among caregivers. RESULTS A total of 418 questionnaires were analyzed. Although several domains of care burden for caregivers were significantly different among the four diseases, the intensity of caregiving and hours spent caregiving were the main definitive variables. In addition, we described different aspects of the care burden using the multi-dimensional care burden scale. The prevalence of depression in caregivers was high (PD, 46%; SCD, 42%; MSA, 63%; ALS, 61%). Hours required for close supervision of the patient (P=0.015), intensity of caregiving (P=0.024), and low household income (P=0.013) were independently-related variables for depression in caregivers. CONCLUSIONS The care burden of caregivers was mainly explained by the intensity of caregiving and hours spent caregiving per day, not only according to the disease. The high prevalence of depression indicates the need for effective interventions, especially for caregivers of patients with MSA and ALS.

Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan

BackgroundWe constructed a concise multidimensional care burden scale that reflects circumstances unique to Japan, with a focus on intractable neurological diseases. We surveyed 646 family caregivers of patients with intractable neurological diseases or stroke using 28 preliminary care burden scale items obtained from qualitative research. The results were used to finalize the feeling of care burden scale (BIC: burden index of caregivers), and verify its reliability and validity.MethodsThe survey was conducted among caregivers providing home health care to patients with intractable neurological diseases (PD [Parkinsons disease], SCD [spinocerebellar degeneration], MSA [multiple system atrophy], and ALS [amyotrophic lateral sclerosis]) or CVA (cerebrovascular accident) using a mailed, self-administered questionnaire between November, 2003 and May, 2004.ResultsResponse rates for neurological and CVA caregivers were 50% and 67%, respectively, or 646 in total (PD, 279; SCD, 78; MSA, 39; ALS, 30; and CVA, 220). Item and exploratory factor analyses led to a reduction to 11 items, comprising 10 items from the 5 domains of time-dependent burden, emotional burden, existential burden, physical burden, and service-related burden; and 1 item on total burden. Examination of validity showed a moderate correlation between each domain of the BIC and the SF-8 (Health related quality of life scale, Short Form-8), while the correlation coefficient of the overall BIC and CES-D was 0.62. Correlation between the BIC and ZBI, a preexisting care burden scale, was high (r = 0.84), while that with the time spent on providing care was 0.47. The ICC (Intraclass correlation coefficient) by test-retest reliability was 0.83, and 0.68 to 0.80 by individual domain.ConclusionThese results show that the BIC, a new care burden scale comprising 11 items, is highly reliable and valid.

Health-related quality of life among community-dwelling patients with intractable neurological diseases and their caregivers in Japan.

Aims:  The aims of this study were: (i) to clarify the general quality of life (QOL) of patients with intractable neurological disease; (ii) to clarify the general QOL of the caregivers of these patients; and (iii) to explore the association of QOL in patient–caregiver pairs.

Experiences of Municipal Public Health Nurses Following Japan's Earthquake, Tsunami, and Nuclear Disaster

OBJECTIVE The purpose of this study was to explore the experiences of municipal public health nurses in the wake of the March 2011 massive earthquake and tsunami and resulting nuclear accident in Fukushima, Japan, from the time of the disaster until December 2013. DESIGN AND SAMPLE Thirty-two public health nurses working in three cities in Fukushima prefecture were divided into four focus groups and took part in interviews, which were analyzed using a qualitative descriptive method. RESULTS Two major themes were extracted: (1) experiences of difficulties and dilemmas, and (2) professional challenges and the meaning of excellence as a public health nurse. Subjects recounted their experiences based on the timeline of events. The process of overcoming various dilemmas--between prescribed roles and actual needs on the ground, being both civil servants and private citizens with families, and having to be publicly accountable while lacking adequate information--caused participants to reexamine the meaning of excellence in the practice of public health. CONCLUSION The strenuous and complex demands of extended disaster management caused subjects to grow professionally. Helping them process their emotions should also help these nurses give focus to their posttraumatic growth, and strengthen their sense of professionalism.

Comparison of hospital admission rates for psychiatric patients cared for by multidisciplinary outreach teams with and without peer specialist: a retrospective cohort study of Japanese Outreach Model Project 2011–2014

Objective This study examined whether having peer specialists (PS) in psychiatric multidisciplinary outreach teams was associated with a lower risk of hospitalisation, improved social functioning and decreased problem behaviours. Design and setting This study was a retrospective cohort study based on medical records. This study was conducted as a part of the Japanese Outreach Model Project 2011–2014, which provides services for persons diagnosed mainly as ICD-10 F0, F2 and F3, who have a high possibility of hospital admission/readmission with regular Japanese outpatient care. Participants A total of 292 participants (clients) from 31 multidisciplinary outreach teams with and without PS (n=108 and 184, respectively) fulfilled the inclusion criteria and were included in the analysis. Outcome measures The primary outcome measure was hospitalisation during follow-up. The difference in hospitalisation during the follow-up between teams with and without PS was analysed by Kaplan-Meier survival curves and a Cox proportional hazards model. The secondary outcome measures were social functioning (Global Assessment of Functioning, GAF) and problem behaviours (Social Behaviour Schedule, SBS) of clients, and were assessed at baseline and at 6-month follow-up. Changes in social functioning and problem behaviours were compared between clients cared for by the two team types. Amount and content of the service were also compared. Results The clients cared by teams with PS had a significantly decreased probability of hospitalisation in Cox proportional hazards models adjusting for baseline characteristics (HR=0.53, 95% CI 0.31 to 0.89). The 6-month change in GAF or SBS was not significantly different between the two groups. Conclusion This is an observational study in which the presence of a PS appeared to be associated with a reduced rate of hospitalisation. A randomised study would be required to demonstrate a causal relationship.

The Role of Home Nursing Visits in Supporting People Living with Dementia in Japan and Australia: Cross-National Learnings and Future System Reform

Abstract Japan and Australia are two western Pacific countries with divergent cultures and histories but they share a common public health concern of providing services for their increasing number of people living with dementia. Age is the greatest risk factor for developing dementia, and Japan is leading the world in aging populations. In 2016 in Japan 27.2% of the total population were over 65, while in Australia 15% were over 65. Both countries have responded to social preferences for community aged care. As a result, in Japan the Visiting Nurse Service Stations (VNSS) and in Australia community aged care service providers such as the Royal District Nursing Service (RDNS) are increasingly addressing the needs of people with dementia and their families. This article presents three sets of data to compare developments in the two health systems and to describe the scope of nursing services for people with dementia in the community. For Japan we analyzed an annual survey of VNSS activities, checked the number of people with a primary diagnosis of dementia, and collected data on presenting conditions on 2012. For Australia we analyzed a sample of two Home and Community Care cohorts of RDNS clients. Results indicated that both generalist service systems include tailored person-centered care for people with dementia. The Japanese system has introduced Dementia Support Doctors while in Australia access to psychogeriatric care is still sparse. As the Asia Pacific region experiences aging populations, community services for people with dementia can use these two systems as models.