[Correction added on 20 May 2015, after online issue publication: Iwao Oshima’s affiliation has been corrected.]
Family needs and related factors in caring for a family member with mental illness: Adopting assertive community treatment in Japan where family caregivers play a large role in community care
Article first published online: 29 SEP 2008
© 2008 The Authors. Journal compilation © 2008 Japanese Society of Psychiatry and Neurology
Psychiatry and Clinical Neurosciences
Volume 62, Issue 5, pages 584–590, October 2008
How to Cite
Sono, T., Oshima, I. and Ito, J. (2008), Family needs and related factors in caring for a family member with mental illness: Adopting assertive community treatment in Japan where family caregivers play a large role in community care. Psychiatry and Clinical Neurosciences, 62: 584–590. doi: 10.1111/j.1440-1819.2008.01852.x
- Issue published online: 29 SEP 2008
- Article first published online: 29 SEP 2008
- Received 23 January 2008; revised 3 July 2008; accepted 14 July 2008.
- assertive community treatment;
- mental illness;
Aim: In Japan the family plays a large role in community care for persons with mental illness; therefore the aim of the present study was to describe the needs of family caregivers related to assertive community treatment (ACT) and to analyze the relationship of these needs to underlying factors.
Methods: Participants were recruited from the membership of three family associations of persons with mental illness. Of the 224 family members, 152 (67.9%) completed a self-report questionnaire consisting of the following measures: demographic variables, family life difficulty scale, global burden, general life satisfaction, subjective health status, family rejection scale, quantity of supportive behaviors, and needs for ACT.
Results: More than 70% of participants reported that service components of ACT would be beneficial, especially in the future. Functions that helped maintain the ordinary routine of family life were significantly correlated with current needs for ACT.
Conclusions: When a person has chronic mental illness the family has many needs related to ACT. When functions that maintained the ordinary routine of family life were disturbed, the need for ACT support increased. Elderly parents or siblings were also concerned about the future, when caring for the member with mental illness would become more difficult.
DEINSTITUTIONALIZATION OF PERSONS with mental illness has just begun in Japan. In September 2004, Japan's Ministry of Health, Labour and Welfare created a vision, ‘from hospital to community’, for reform of the mental health care system. The vision included downsizing the number of psychiatric beds as one of the primary objectives.
In Japan, intensive and comprehensive case management systems must be developed. It is imperative that community mental health care is available and appropriate for persons with mental illness as they are discharged from the hospital and attempt to integrate back into the community.1 Intensive and comprehensive case management systems are core components of community mental health services in deinstitutionalized countries.2
Assertive community treatment (ACT) is a community mental health program that was originally developed by Stein and Test as an alternative to hospitalization.3–5 ACT is one of the most well-disseminated, evidence-based case management programs.6–8 ACT provides a highly individualized and comprehensive array of services, with integrated medical and rehabilitation services delivered by an interdisciplinary team in the community.9 The model's premise is that patients have better outcomes if they are supported directly in their community environments.4,10
In 2003 the first experimental adoption of ACT (ACT-J project) was started at the National Center of Neurology and Psychiatry in Chiba, Japan. Consideration of Japanese cultural concepts are important, in order to disseminate ACT within a social context that differs from Western countries. For example, an essential component of ACT in Japan is family support. This component is already in place, because historically family members have played an important role in community care of people with severe mental illness in Japan.11
The purpose of the present study was to investigate and describe the family members' needs related to the ACT program. Furthermore, we analyzed the relationship between needs and underlying factors such as caregiver burden or negative attitudes towards persons with mental illness. This analysis was conducted in order to understand forms of family support that could be provided by ACT.
Participants were recruited from three family associations of persons with mental illness located in Ichikawa and Matsudo. These were included in the catchment area of the ACT-J project. Two were organized to cover the entire urban area of the two cities, and one was affiliated with a sheltered workshop. Of the 224 family members, 152 (67.9%) consented to participate and answered the questionnaire.
The survey was conducted from September to December 2003. Self-report questionnaires were circulated at the monthly meetings of two associations and collected at that time. For absentees and other members, the questionnaires were sent by mail.
Participants were informed that participation was voluntary and that treatment and program benefits were not affected by refusal. They were further reassured that anonymity and data security was maintained and that data would be treated statistically and used only for research purposes. The research ethics board of the National Center of Neurology and Psychiatry approved this study.
Variables were classified broadly into three categories: needs related to ACT, family functioning, and demographic characteristics. Additionally based on previous research,12 family functioning was subclassified as follows: family functioning related to caring for individuals with mental illness (FCI) and family functioning related to ordinary family life and daily routines (FFL). The reliability and validity were established for the Japanese versions of all scales used in this study.
Needs for ACT
The needs scale for each component of ACT was composed of 16 items with four anchored points (4, very beneficial; 3, moderately beneficial; 2, minimally beneficial; 1, not beneficial at all).13 Each item described the essential service features of ACT, such as services provided at home or by a multi-disciplinary team. Each item was posed in terms of current or future benefit. The sum of these points was converted to 100 points and defined as current needs for ACT and future needs for ACT. The questionnaire had vignettes that provided additional information about ACT for those who did not know about the program. The vignettes were validated by experts in community mental health services in Japan. Furthermore, open questions about ACT were used.
Family functioning related to caring for individuals with a mental illness
FCI included all types of activities related to providing care and support for a family member with a chronic illness, such as monitoring medication, watching for signs of relapse, and providing ongoing physical support such as providing shelter and food. In the present study rejecting and supporting behaviors were included to identify how the family functioned in the caregiver role; therefore family rejection scale and supportive behaviors scale were classified as part of FCI.
To evaluate the participants' feelings about accepting the problems and responsibilities associated with a family member with mental illness, we used Kreisman's family rejection scale.14,15 This scale has 11 items and the items were rated on a 3-point scale (2, I agree very much; 1, I agree; and 0, I don't agree). Cronbach's alpha in this study was 0.64.
To evaluate supportive behaviors of participants, we used the Oshima supportive behaviors scale.12 This scale was composed of 17 items, the items were rated on a 3-point scale (2, usually provided; 1, sometimes provided; and 0, not provided) and the sum of these scores was defined as the number of supportive behaviors. Percentage of supportive behaviors was defined as the number of supportive behaviors provided by family members divided by the total number of behaviors that needed support. Cronbach's alpha in this study was 0.87.
Family functioning related to ordinary family life and daily routines
FFL was defined as the gamut of functions used to maintain normal routines and roles that support individual members and sustain the family as a unit; for example, providing physical support such as shelter and food, and emotional support such as love and affiliation. In addition, each individual family member would want to have time for a life of their own, to cope with individual concerns, and to search for self-fulfillment. In the present study family difficulties, burdens, life satisfaction, and subjective health status were included as important contributors to FFL. The following scales were used to measure these elements.
The family life difficulty scale was used to measure the difficulty and adversity that caregivers experience in trying to manage social and family life, finances, and control over their personal lives while caring for a member with mental illness.15 This scale has 15 items, such as, ‘I have no time for myself’. Items were scored from 0 to 2; the sum was the family life difficulty score. Scores on this scale ranged from 0 to 30, with higher scores indicating more difficulty. Cronbach's alpha in this study was 0.90.
Caregiver burden was measured using the Japanese version of the single global burden scale from the Zarit burden interview (ZBI). It was scored on a 5-point Likert scale from 1 to 5, with higher scores indicating a more severe burden.16,17
General life satisfaction and subjective health status were also scored on a 5-point scale using a single question, with higher scores indicating more satisfaction and better health status.18
The following demographic characteristics were collected: sex, age, duration of mental illness, total number of admissions to psychiatric hospitals, and the relationship of the caregiver to the ill family member. In addition, information was collected about the social role functioning of the member with mental illness and about the use of social resources.
The basic characteristics that described the participants and family members with mental illness were analyzed. We then assessed the family needs for ACT and significance of difference between current and future needs for ACT using the paired t-test. The relationships between family functioning and needs were analyzed using Pearson's correlation coefficient. Next, to identify whether FCI or FFL had the greater effect on family needs, we conducted multiple linear regression. Goodness of fit of the model was assessed by means of R2 controlling for participants' sociodemographic and clinical characteristics (age, sex, social role functioning, duration of mental illness, number of admissions to psychiatric hospitals, diagnosis and use of social resources). Analyses were performed using SPSS version 11.5J (SPSS, Chicago, IL, USA).
The majority of families (69.7%) had a member who was diagnosed with schizophrenia. Average length of time since initial diagnosis was 14.5 years. Average age of participants was 63.6 years. The participants' relationship to the mentally ill member included 112 mothers (73.7%), 27 fathers (17.8%), three siblings (2.0%), and 10 others (6.6%).
Distribution of needs for ACT score and comparison between current and future needs
More than 70% of participants answered ‘very beneficial’ or ‘beneficial’ for most of the 16 items related to the service components of ACT. Additionally, >90% answered positively about items of future needs (Fig. 1). The future needs were significantly higher than current needs in each item.
Relationship between factorial variables and needs for ACT
Table 1 shows that all of the scales regarding the FFL were significantly correlated with current needs for ACT. Scales for FCI did not show significant correlation except for general life satisfaction. Other variables such as duration of mental illness and the number of admissions to psychiatric hospitals had significant correlation with current needs for ACT. In contrast, there were no significant correlations for future needs for ACT for those variables.
Regression analysis using needs for ACT as dependent variables
Table 2 shows the regression analysis of the family functioning scales using current and future needs for ACT as dependent variables. Proportions of variance in regression equations (R2) and changes in proportions of variance (increased proportions, included in family functioning scales after controlling for background variables) of FFL were larger than FCI, especially when current needs for ACT were included in equations as dependent variables.
|Current needs for ACT|
|Future needs for ACT|
Features of family needs for ACT
The future needs for ACT were greater than the current needs. This is understandable because aging parents or siblings envision a time in the future when it will be difficult for them to care for the family member with mental illness. This result can be interpreted as an expression of anxiety about the future and the hope that ACT will provide the care that is currently being provided by the family. We can see this anxiety in the quotes: ‘My fatigue escalates with my age.’ (65-year-old mother) or ‘I'm unsure about my child's life after we die’ (70-year-old father). Significant correlation between current needs for ACT and duration of mental illness suggests growing anxiety about the future and the needs for ACT year by year.
Differences between current and future needs for each item varied. Items that are related to support provided by family members such as, maintaining daily living, financial management skills training, or services provided in the home or community show significant differences between current needs and future needs. In contrast, items that reflect needs that family members cannot meet such as, services that continue as long as needed, vocational services, or 24/7 crisis intervention, have less significant differences between current and future needs. In other words, when family members are able to provide care for the member with mental illness, current needs are relatively low and future needs are high. When there is current difficulty in providing care, both current and future needs are high. Typical examples included, ‘I'm not interested in ACT because our family members can provide care right now . . .’ (63-year-old father, current needs: 68.8, future needs: 98.4) and ‘I'm not young enough to support my brother by myself anymore.’ (58-year-old sibling, current needs: 95.3, future needs: 98.4).
Factors of family needs for ACT
Family functions that have significant correlation with current needs for ACT are part of FFL (Table 1). If the family is having trouble maintaining a stable and ordinary existence, the need for ACT increases. This is an important factor leading to family needs for ACT. This tendency is sustained even after controlling for background variables.
Family life difficulty has a significant correlation with the number of supportive behaviors provided by the family members. This correlation can be interpreted as an increase in family burden as a consequence of supportive behaviors.12 For example, ‘It's been 23 years since the onset of his illness. Last year, I felt exhausted and went to the clinic. I was diagnosed with depression . . .’ (74-year-old mother). When the caregiver must provide excessive or continuous supportive behavior the need for ACT support is considerable.
The relationship between family life difficulty and quality of family life has been noted,19 as well as the relationship between family life difficulty and expressed emotion (EE).20 EE is an important psychosocial prognostic factor of chronic mental illness such as schizophrenia.2,21,22 It is important to note that caring for a member with mental illness can reduce family life difficulty and also improve the prognosis of the individual with mental illness. Past research indicates that family psychoeducation or other family support reduces family life difficulty.23 In Japan the ratio of family members living with persons with mental illness is higher than in Western countries;21 this suggests that integrating family psychoeducation into ACT is efficient.24,25 The present study indicates the importance of integrating family needs, especially FFL, into ACT.
Implications for ACT teams in Japan that are providing family care
The present analysis indicates that ACT is expected to help and substitute in the care provided by the family. In contrast, the need for ACT is small when family life is not disturbed and routine function is well sustained. Collaboration with family members based on the assessment of family life functioning is important for implementing ACT in Japan, where family caregivers play a large role in community care. In the present study we found that ACT support was important not only for the family members but also for the persons with mental illness.
Limitations and future study
There are limitations in the present study that are worth noting. First, the data were assessed by self-report and it was not a random sample. Therefore, it is possible that participants did not represent typical families of the mentally ill. Second, we were unable to longitudinally determine the relationship between the needs for ACT and factorial variables.
Although these considerations limit the generalizability, we feel that the strength of the present study is that it is the first survey to investigate the relationship between family needs related to ACT and family functioning in Japan, where the ratio of persons with mental illness living with family members is high.
Future studies should include other diverse aspects of family characteristics that affect the needs for ACT.
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