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Blackwell Science, LtdOxford, UK PCN Psychiatric and Clinical Neurosciences 1323-13162003 Blackwell Science Pty Ltd 572April 2003 1096 Family support system for schizophrenics Y. Hamada et al. 10.1046/j.1323-1316.2002.01096.x Original Article161168BEES SGML

Psychiatry and Clinical Neurosciences (2003), 57, 161–168

Regular Article

Factors affecting the family support system of patients with schizophrenia: A survey in the remote island of Tsushima YOSHITO HAMADA, MD1 YASUYUKI OHTA, MD, PhD2 AND YOSHIBUMI NAKANE, MD, PhD3 1 Sonoda Hospital, 2School of Health Sciences, Nagasaki, University and 3Department of Neuropsychiatry, Nagasaki, University School of Medicine, Japan

Abstract

Possible support for home-cared schizophrenic patients and their families was investigated on Tsushima, one of the many isolated islands in Japan. The psychopathologic symptoms of the patients were evaluated using the Brief Psychiatric Rating Scales (BPRS), their social adjustment using the Psychiatric Disability Assessment Schedule (DAS), mental states of the families using the General Health Questionnaire (GHQ), and the quality of life (QOL) using the Life Satisfaction Rating Scales (LSR). The family support systems for the patients were evaluated with regard to: (i) family support for the patient’s daily life (FS), (ii) hardships of family life caused by living with the patient (HF), and (iii) empathic attitude of the family toward the patient (EA). Psychotic symptoms of schizophrenic patients were closely related to the mental state and QOL of their families. Family support was significantly correlated with HF and EA. Moreover, the family support system was shown to be related both to the psychotic symptoms of the patient and the mental state of the family. These results suggest that an approach to improve the family support system for the patient may exert positive effects on the patient’s psychotic symptoms and his/her social adjustment. We also consider that intervention by a public organization is necessary to improve the family support system on islands.

Key words

community care, family support system, islands, mental health, schizophrenia.

INTRODUCTION The family factor is one of the psychosocial factors that affect the clinical course and outcome of schizophrenia including its recurrence.1–4 A close relation between the degree of emotional expression by the family and the recurrence rate of schizophrenic patients has been demonstrated regardless of country and culture.5–7 The effect of a psycho-educational family therapy developed on the basis of the results of these studies for prevention of recurrence has been recognized, and this approach has contributed to the development of psychiatric treatments.8–10

Correspondence address: Yoshito Hamada, Sonoda Hospital, Takeo 4017, Takeo-cho, Takeo, Saga 843-0022, Japan. Email: [email protected]. Received 17 April 2002; revised 3 September 2002; accepted 9 September 2002.

Regular Article

However, from the viewpoint of community mental health care, not only direct approaches for schizophrenic patients but also the care for the mental health of their families must be considered. The family is the most basic social unit, and the behavioral pattern of the family appears through the filter of regulations in living in the local society. Therefore, the system of care and support of the patient by the family is affected by the social and cultural values of the area in which the patient lives. There are a large number of islands in Japan, and it is important to provide psychiatric care according to community characteristics of each island. On many islands, the inhabitants live by maintaining their traditional culture despite progressing depopulation and aging. Tsushima in Nagasaki Prefecture is one such island that has retained its characteristic lifestyle. Although local psychiatric health care on Tsushima has developed by regular stationing of a psychiatrist and

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establishing a psychiatric ward, the island still lacks social resources. Under these circumstances, clarifying the state of patients with psychiatric disorders and their families is necessary for designing future psychiatric care on islands. Moreover, investigation conducted on an island is expected to yield numerically accurate data because of its geographic conditions and to reflect aspects of the state of patients with psychiatric disorders in Japan.11,12 This study was performed to clarify the interrelation between schizophrenic patients and their families on Tsushima through evaluation of the state of mental health and degree of satisfaction with living of the families and the family systems of care and support for the patients.

SUBJECTS AND METHODS Tsushima and patients Tsushima, in Nagasaki Prefecture, is a long and narrow island about 82 km from north to south and about 18 km from east to west. It is separated from the Korean Peninsula by the Korea Strait to the north and from mainland Kyushu by the Tsushima Strait to the south. Since mountains of 200–300 m are along the shores, small villages (70% of all villages have a population of 300 or less) are located in flat areas along the shore. The population of the island in October, 1995 was 43 513, being reduced by 2551 (5.5%) compared with the population in 1990.13 The population density was 61.4 persons/km2 which was less than one-fifth of the national average. The number of members of a household was 2.9, which was similar to the national average, and the trend toward the nuclear family was progressing also on the island.13 The subjects of this study were patients diagnosed to have schizophrenia according to the DSM-III-R.14 The total number of home-cared schizophrenic patients was 163 on 15 November 1994. Excluding eight patients who had no family and nine who were lost to follow-up, 146 were informed of the objectives and methods of this study in detail, and 121 patients and 121 members of their families who consented were enrolled as the subjects. When there were two or more in the patient’s family, a member considered to be the key person was selected by conference between the author and the public health nurses.

Investigation methods Psychotic symptoms and social adjustment of the patients Psychotic symptoms were evaluated using a 7-point scale according to the Brief Psychiatric Rating Scale

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(BPRS),15,16 in which the score increases with the severity of the symptoms. This evaluation method is widely recognized in the field of psychiatry also in Japan.16 Social adjustment was evaluated using a Japanese version of the Psychiatric Disability Assessment Schedule (DAS)17 of the WHO for the assessment of the degree of impairment of abilities to perform functions including self-care and occupational roles. The DAS, consisting of seven comprehensive levels, gives a higher score to a lower level of social adjustment.

Mental state and quality of life of the family The mental state of the family was evaluated using the 30-item General Health Questionnaire (GHQ).18 In the GHQ, four possible answers are presented for each question, the answers are scored by the (0, 0, 1, 1) system, and a higher total score suggests a greater possibility of poor mental health. Concerning GHQ-30 in Japanese, the threshold for the judgment that ‘the patient probably has a nonpsychotic psychiatric disorder’ has been confirmed to be 7/8.19–21 We also used the Life Satisfaction Rating Scales (LSR)22,23 as an index of quality of life (QOL) of the family. This scale is a 20-item questionnaire concerning the degree of satisfaction with the past, present, and future designed to evaluate how positively or negatively the patient perceives the state of himself/ herself at each time. It gives a higher score to a higher degree of satisfaction.

Family support system The support function of the family for the home-cared patient was evaluated using the scales of the ‘family support system’ developed by Ohshima.24,25 The entire relation between the family and the patient seen from the family as care-givers is viewed with regard to: (i) family support for the patient’s daily life (FS), (ii) hardships of family life caused by living with the patient (HF), and (iii) empathic attitude of the family to the patient (EA), and the whole consisting of these three factors is defined as the ‘family support system’. The evaluation items concerning FS and HF were chosen from five areas of living: physiologic life, working life, leisure and cultural life, social life, and plans for the future. Family support was evaluated by 14 items using a 3-point scale, by which the total quantity of care and support actions by the family in the patient’s daily living is expressed as the product of the frequency and degree of such actions. FS is calculated as the percentage of activities of daily living in which the family provides support among those that the patient cannot perform alone (Table 1).

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Table 1. Items of family support and distribution of answers

(1) Pay attention to create a rhythm in life (2) Pay attention to sanitation and appearance (3) Pay attention to whether the patient regularly visits the hospital and encourage him/her to do so (4) Pay attention to whether the patient regularly takes drugs and encourage him/ her to do so (5) Keep close contact with the hospital (6) Pay attention to changes in the patient’s condition (7) Advise the patient to find a job appropriate for him/her (8) Pay attention so that the patient can keep the job without excessive difficulties (9) Advise the patient to have hobbies and interest in life (10) Advise the patient to find opportunities to participate in social events and friends (11) Study to increase knowledge of the disease (12) Make preparations for the future of the patient (13) Listen to the patient as much as possible (14) Talk to the patient when he/she is in trouble

Often done (%)

Sometimes done (%)

Not done (%)

Done by patient (%)

Total (%)

40 (33.1) 37 (30.6) 27 (22.3)

56 (46.3) 52 (43.0) 35 (29.0)

25 (20.6) 32 (26.4) 59 (48.7)

17 (14.0) 15 (12.4) 21 (17.4)

121 (100) 121 (100) 121 (100)

35 (28.9)

83 (68.0)

3 (2.5)

0 (0)

121 (100)

21 (17.4) 20 (16.5)

77 (63.6) 84 (69.5)

23 (19.0) 17 (14.0)

0 (0) 0 (0)

121 (100) 121 (100)

8 (6.6)

34 (28.1)

79 (65.3)

12 (9.9)

121 (100)

6 (5.0)

33 (27.3)

82 (67.7)

51 (42.1)

121 (100)

10 (8.3)

53 (43.8)

58 (47.9)

17 (14.0)

121 (100)

8 (6.6)

66 (54.6)

47 (38.9)

5 (4.1)

121 (100)

6 (5.0) 5 (4.1)

38 (31.4) 30 (24.8)

77 (63.6) 86 (71.1)

10 (8.3) 4 (3.3)

121 (100) 121 (100)

4 (3.3) 5 (4.1)

22 (18.2) 22 (18.2)

95 (78.6) 94 (77.7)

0 (0) 2 (1.7)

121 (100) 121 (100)

Number of support actions = 2 ¥ S (often done) + S (sometimes done) FS = Number of support actions/2 ¥ (14 items – items performed by the patient alone) ¥ 100 HF is a measure of hardships in the living of the family caused by the presence of the patient selfevaluated using a 3-point scale concerning 16 items (Table 2). HF = 2 ¥ S (very much) + S (somewhat) EA is an index of the psychological attitude of the family to the patient assessed using a 3-point scale concerning nine items (Table 3). The reliability and validity of these scales have been established.24,25

RESULTS The subjects consisted of 67 males (55.4%) and 54 females (44.6%) with a mean age of 42.6 ± 13.0 years. The mean duration of illness was 15.3 ± 10.0 years, and the mean number of hospitalizations was 3.2 ± 3.0. Of the subjects, 97.5% grew up on the island, and 80.1% lived at home at the time of the investigation. Concern-

ing the marital state, 50.4% were unmarried, and only 28.1% were married. As for employment, 48.8% were unemployed, and 19.9% were on welfare. The key person was a female in 57.9% of the families. Of the key persons, 37.2% were the patients’ mothers, 17.4% were fathers, 22.3% were spouses, and 15.7% were siblings. A total of 88.5% of the patients lived at home and 75.2% of the patients’ families were nuclear families. Of the key persons, 78.5% lived with the patients, and, including those who lived at a walking distance from the patients, 94.2% lived near the patients (Table 4). Concerning individual items of FS, more than 70% of the families replied that they ‘often’ or ‘sometimes’ supported the patients in mental health management and daily living such as ‘observation of the condition’ and ‘taking drugs’. However, only 50–60% of the families supported the patients in social and cultural fields such as ‘having hobbies and interest in life’ and ‘participation in social activities’. More than 70% of the families did not provide overall psychological support such as ‘listen to the patient as much as possible’ and ‘talk to the patient when he/she is in trouble’, and 60%

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Table 2. Items of hardships in living and distribution of answers Very much (%)

Somewhat (%)

No (%)

Total (%)

44 (36.4) 61 (50.4) 53 (43.8)

39 (32.2) 36 (29.8) 47 (38.8)

38 (31.4) 24 (19.8) 21 (17.4)

121 (100) 121 (100) 121 (100)

47 (38.8) 57 (47.1) 50 (41.3)

53 (43.8) 45 (37.2) 58 (47.9)

21 (17.4) 19 (15.7) 13 (10.8)

121 (100) 121 (100) 121 (100)

64 (44.6)

47 (38.9)

20 (16.5)

121 (100)

60 (49.6) 37 (30.6) 45 (37.2)

42 (34.7) 62 (51.2) 63 (52.1)

19 (15.7) 22 (18.2) 13 (10.7)

121 (100) 121 (100) 121 (100)

53 (43.8)

56 (46.3)

12 (9.9)

121 (100)

42 (34.7) 72 (59.5) 82 (67.8) 12 (9.9)

42 (34.7) 22 (18.2) 9 (7.4) 71 (58.7)

37 (30.6) 27 (22.3) 30 (24.8) 38 (31.4)

121 (100) 121 (100) 121 (100) 121 (100)

50 (41.3)

45 (37.2)

26 (21.5)

121 (100)

(1) Economic burden due to the patient (2) Cannot work because of the care for the patient (3) Cannot perform housework because of the care for the patient (4) More arguments and less pleasure at home (5) Cannot go out leaving the patient at home alone (6) Feel embarrassed and cannot associate well with neighbors (7) Feel alienated from relatives and cannot associate well with them (8) Cannot have time alone (9) Physically and mentally exhausted from care (10) Have many worries such as marriage of other family members (11) Anxiety and impatience due to being unable to plan for the future of the family (12) Difficulty to have the patient keep taking drugs (13) Problems and violence to family members (14) Problems and violence to other people (15) Worries about sudden changes of the condition, recurrence, and suicide (16) Disagreement between the hospital (attending physician) and the family

of the families did not ‘study about the disease’ (Table 1). Concerning HF, more than 60% of the families replied that they had hardships ‘very much’ or ‘somewhat’. Especially, more than 80% of the families felt difficulties in social living such as ‘difficulties in planning life’ and ‘worries about the family and neighbors’. Moreover, 80% of the families felt hardships in working life and troubles in daily living such as ‘not having one’s own time’ and ‘not being able to go out leaving the patient alone at home’ (Table 2). Concerning the degree of sympathy, about 70% of the families answered they would ‘continue to care for the patient’, and more than 90% of the families answered affirmatively to ‘effort and support by the family improve the course of the disease’. However, 70% of the families had a feeling that they were ‘sacrificing’ themselves, and 60% of them were dissatisfied with the patients’ present motivation or roles. While 70% of them understood the distress of the patients, less than 50% of them understood their abnormal speech and behavior (Table 3). The mean BPRS score was 41.9 ± 10.89, and the mean DAS score was 4.7 ± 0.94. The mean GHQ score of the families was 8.5 ± 7.6, and the mean LSR score was 7.9 ± 4.79. Table 5 shows the relationships between

the scores of BPRS and DAS of the schizophrenic patients and the scores of GHQ, LSR, and FS of their families. A significant positive correlation was observed between the total BPRS score and the total DAS score in the patients. Also, a significant negative correlation was observed between the total GHQ score and the total LSR score in the families. The total BPRS score and the total DAS score of the patients showed a significant correlation with the total GHQ score and the total LSR score of the families. The score of FS was correlated with the scores of GHQ and LSR of the families. It was also correlated with the scores of BPRS and DAS of the patients. Multiple regression analysis using the stepwise method was carried out to find factors related to HF. HF was related to the scores of BPRS, GHQ, FS, and EA (Table 6).

DISCUSSION Concerning the relationships among the three factors of the family support system (FS, HF, and EA), effects of FS, which reflects the function of the family as caregivers, and EA, which reflects psychological events of the family with a psychiatric patient as a member, on HF, which reflects the degree of impairment of family

Family support system for schizophrenics

Table 3. Items of empathic attitude of the family to the patient and distribution of answers (%) (1) I think I will be able to get along well by understanding how the patient feels and adjusting my approach to the patient. (1) Yes, I certainly do. 41 (33.9) (2) Yes, I do a little. 75 (62.0) (3) No, I don’t. 5 (4.1) (2) Do you think you will continue to care for the patient? (1) I want to continue to care for the 88 (72.7) patient. (2) I don’t want to care for the patient. 32 (26.4) (3) Care is unnecessary. 1 (0.8) (3) Do (1) (2) (3)

you think you and the patient are doing well now? Yes, I certainly do. 75 (62.0) Yes, I do a little. 44 (36.4) No, I don’t. 2 (1.7)

(4) Do you think you are not rewarded for caring for the patient and you are sacrificing yourself for the patient? (1) Yes, I certainly do. 20 (16.5) (2) Yes, I do a little. 68 (56.2) (3) No, I don’t. 33 (27.3) (5) Do you ever feel dissatisfied with the motivation of the patient and want him/her to become more motivated? (1) I am not dissatisfied. 14 (11.6) (2) I am not dissatisfied so much. 35 (28.9) (3) I am dissatisfied. 72 (59.5) (6) Do you ever feel dissatisfied with the work and roles of the patient in the household and want him/her to do better? (1) I am not dissatisfied. 16 (13.2) (2) I am not dissatisfied so much. 32 (26.4) (3) I am dissatisfied. 73 (60.4) (7) Do you think that the effort and support by the family improve the course of the disorder? (1) Yes, I certainly do. 35 (28.9) (2) Yes, I do a little. 82 (67.8) (3) No, I don’t. 4 (3.3) (8) Do you think that the patient is suffering and is making some effort in his/her own way? (1) Yes, I certainly do. 20 (16.5) (2) Yes, I do a little. 65 (53.7) (3) No, I don’t. 36 (29.8) (9) If the patient shows abnormal speech and behavior, do you think there is some meaning in them? (1) Yes, I certainly do. 5 (4.1) (2) Yes, I do a little. 50 (41.3) (3) No, I don’t. 66 (54.5)

functions as a group of individuals, must be considered. The greatest problem revealed by these results is ‘the increase in HF with FS’, indicating that support actions are burdens to family living.

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Psychotic symptoms and social adjustment of the patients were correlated with HF and EA, and severe psychotic symptoms and social maladjustment of the patient reduced the empathy of the family and increased hardships in their living. However, no interrelation was observed between the psychotic symptoms or social adjustment of the patients and the degree of family support. The absence of the association of FS with psychotic symptoms and social adjustment of the patients may be explained as follows. The families lost their readiness to take support actions as deteriorating psychotic symptoms of the patients reduced EA and increased HF of the families. High FS and low HF are considered to be the optimal patient– family relationship, but the transition from high FS and high HF to high FS and low HF requires knowledge of the family about schizophrenia and their empathy to the patients. Knowledge and empathy are the keys to support that is maintained at an adequate level, in harmony with family life, and given in a tolerable range of family sacrifice with no interference with selfrealization of family members. Similarly to our observations, Oshima reported that empathy, which allows the family to positively accept their relations with the disabled member, increases the ‘number of support actions’ and reduces the level of hardships in living of the family.24 Further detailed evaluation of the cause– effect relations among various factors by multivariate analysis such as path analysis is needed. In this study, the level of support concerning the mental health management of the patients was high. However, only 50–60% of the patients received advice for enrichment of social and cultural life, and more than 70% of the patients did not receive support from their families concerning psychological aspects of living in general. These results were in agreement with the suggestion that a higher level of productive activities is expected or required of the patients from their families on islands than urban families.26 Concerning HF, the families felt major difficulties in the field of social life, working life, and troubles in living. HF has been evaluated in a national family survey.27 While the result that complaints of ‘no outlook for the future’ were the most frequent was in agreement with the results of our study, it is worth particular attention that ‘worries about neighbors’, which ranked the nineth in the national survey, came second among the HF items in our study. HF characteristically appeared as worries about the community–family relationship in our subjects’ living in small villages of Tsushima. Many of the following descriptions of characteristics of isolated regions compared with those of urban regions by Namihira fit those of Tsushima: (i) population movement is small; (ii) many members of

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Table 4. Characteristics of the patients and their families (n = 121) Patients (n = 121)

Families (n = 121)

Males (%) Place of growth On the island In a middle-sized or small town In a large city

55.4%

42.1%

97.5% 0.8% 1.7%

Home Own house Apartment Rented house Others

80.1% 13.2% 1.7% 5.0%

Relation with patient Father Mother Spouse Sibling Child Others

17.4% 37.2% 22.3% 15.7% 1.6% 5.8%

Distance to patient’s house Same house Walking distance Driving distance

78.5% 15.7% 5.8%

Table 5. Interrelations among various factors of the patient and family Patients

Patients BPRS DAS Families GHQ LSR FS HF EA

Families FS

BPRS

DAS

GHQ

LSR

HF

EA



0.737** –

0.191* 0.211*

-0.273** -0.253**

NS NS

0.502** 0.498**

-0.350** -0.409**



-0.582** –

NS 0.185* –

0.278** -0.263** 0.246** –

-0.231* 0.291** 0.407** -0.459** –

Pearson’s correlation coefficient: * P < 0.05, ** P < 0.01. NS, not significant; BPRS, Brief Psychiatric Rating Scale; DAS, Disability Assessment Schedule; GHQ, General Health Questionnaire; LSR, Life Satisfaction Rating Scales; FS, Family Support for the Patient’s Daily Life; HF, Hardships of Family Life; EA, Empathic Attitude of the Family to the Patient.

Table 6. Results of the multiple stepwise regression analysis for HF as a dependent variable Variable

Beta

t

P-value

Constant BPRS GHQ FS EA R

2.251 0.310 0.131 0.471 -0.512 0.737

0.026 4.552 2.020 6.786 -6.814

0.000 0.046 0.000 0.000

HF, Hardships of Family Life; BPRS, Brief Psychiatric Rating Scale; GHQ, General Health Questionnaire; FS, Family Support for the Patient’s Daily Life; EA, Empathic Attitude of the Family to the Patient; Beta, standardized partial regression coefficient; R, multiple correlation coefficient.

the community are relatives; (iii) the local community is also a collaborative organization, because many members of the community support themselves by the same industry; (iv) similar knowledge, experiences, skills, and values are shared among members of the community; and (v) there are mutual assistance, intervention, monitoring, and regulations of behavior. Oshima also compared the system of family support for home-cared patients with psychiatric disorders between urban and isolated regions and observed that, in isolated societies, relationships with neighbors are close, and arrangements to support family care are made on the basis of blood and shared territorial bonds.28 Local residents are not complete strangers to the family, and the family are related to the local community in multiple layers through blood and shared

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interests as local residents. Although such relations are advantageous in turning the community environment into resources for regional mutual aid, the physical closeness of most of the family members to the patient inevitably leads to their worries of being a trouble to the neighborhood. In depopulated areas, where the development of social resources is naturally delayed, there are few opportunities for patients and their families to be relieved of the closeness of the local community. For this reason, enrichment on the social side such as mental health care intervention or support by a public organization as a third party is needed to provide buffers. In addition, 60% of the families did not research schizophrenia. Agricultural communities are reported generally less oriented to learning.24 Correct understanding of schizophrenia is necessary to give appropriate care for the patients, and empathy to the patients is considered to be enhanced through the learning process. The finding by Oshima et al. that close involvement by specialists was maintained, and public support systems were used more frequently, by families that showed a high support level but a low hardship level also indicates the importance of learning.24,29 Intervention by a public organization is also necessary in this respect. In this study, a close association was observed between the psychotic symptoms of schizophrenic patients and the mental state of their families. Moreover, the family support system was found to be related both to the patients’ symptoms and the mental state of their families. These results suggest that an approach to create a high support–low hardship care system in the family may exert favorable effects also on the psychotic symptoms and social adjustment of the patients. However, simple increases in the support level were confirmed in this study to merely increase the hardship level of the family. Therefore, it is necessary to understand the family not only as caregivers but also as sufferers. Also, when the local characteristics of an island were taken into consideration, intervention by a public organization was suggested to be indispensable for improving the family support system. In the future, close examination of how the system of family support for schizophrenic patients differs according to the background of the patient is necessary. In addition, for grasping the family in its entirety, the influence of members other than the key person must also be taken into consideration. We expect that confirmative studies are carried out in other isolated islands by similar methods and that results in comparison with those in urban regions are reported.

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CONCLUSIONS In this study, the exact number of patients could be determined, and the same observer could serially follow up and evaluate the subjects because of the geographic advantage of an island. Moreover, the patients and their families could be evaluated by a widely used method, the patient–family relations could be observed from the viewpoint of the family support system, and support of families to their schizophrenic members could be quantitatively approached. By directing attention to the mental health of the local residents, harmonizing the viewpoints of schizophrenic patients and their families, and formulating a practical strategy of mental health care, psychiatric care for schizophrenic patients on Tsushima may present a model of community mental health care.

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