Hong Kong J Psychiatry 2008;18:101-6

ORIGINAL ARTICLE

Experience of Caregiving in Caregivers of Patients with First-episode Psychosis

首發思覺失調患者照顧者之照顧經驗

FYM Mo, WS Chung, SW Wong, DYY Chun, KS Wong, SSM Chan
巫綺文、鍾維壽、王小雲、泰玉怡、黃健常、陳秀雯

Dr Flora YM Mo, MRCPsych, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Dr WS Chung, FHKCPsych, FHKAM (Psychiatry), Department of Psychiatry, Tai Po Hospital, Hong Kong, China.
Ms SW Wong, Registered Nurse, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Ms DYY Chun, Registered Nurse, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Mr KS Wong, Registered Nurse, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Prof SSM Chan, FHKCPsych, FHKAM (Psychiatry), Department of Psychiatry, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.

Address for correspondence: Dr Flora Mo, Department of Psychiatry, New Territories East Cluster, Hong Kong, China. Tel: (852) 74729231; Fax: (852) 31244356; E-mail: moym311@hotmail.com

Submitted: 11 February 2008; Accepted: 19 June 2008


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Abstract

Objective: This study aimed to investigate the experience of caregiving, the relationship between demographic and clinical variables and the dimensions of the experience for caregivers managing patients attending a First Episode Psychosis Clinic in Hong Kong.

Participants and Methods: Caregivers of 139 patients with first-episode psychosis completed a locally validated Experience of Caregiving Inventory, a 66-item self-report questionnaire measuring positive and negative appraisals of the care giving experience. Patients' psychopathology was assessed using the Positive and Negative Syndrome Scale.

Results: Patients' functional levels correlated significantly with negative appraisal levels. Female patients were significantly associated with positive appraisal levels. A linear regression analysis revealed that a negative symptom score, a history of deliberate self-harm, and a family history of psychiatric illness emerged as significant predictor variables.

Conclusion: The results indicate that caregivers in Hong Kong are distressed by difficult behaviours and patients' negative symptoms.

Key words: Caregivers; Psychotic disorders; Questionnaires

摘要

目的:本研究探討首發思覺失調病人的照顧者其照顧經驗,與人口學臨床變數之關係。

參與者與方法:共139位首發思覺失調患患者的照顧者參與本研究。他們完成的66項之「照顧經驗量表」,以量度照顧者經驗的正面和負面評價, 並用「陰性和陽性症狀量表」測量病人的精神病理狀況。

結果:病人的功能狀況與照顧者負面評價顯著相關。女性患者與照顧者的正面評價顯著相關。線性迴歸分析顯示陰性症狀、有自毀的病史, 和有精神病的家族史都是重要的預測變數。

結論:結果顯示, 香港首發精神分裂病人的照顧者受病人的行為問題及陰性症狀困擾。

關鍵詞:照顧者、精神異常、問卷調查

Introduction

The burden of mental illness imposed on caregivers has been studied for more than 4 decades. Hoenig and Hamilton1 classified the caregiver burden into objective and subjective aspects. Objective burden refers to the events that disrupt family / household life owing to the patient’s illness.2 These judgements are largely based on hypothetical situations.3 Subjective burden refers to the caregiver’s personal appraisal of the situation and the extent to which individuals perceive that they are carrying a heavy load.4 There are different approaches for measuring the subjective burden.5-7 The stress-coping model8 is conceptualised as an appraisal of demands. Stressors included the patient’s illness, behaviours, disabilities, and perceived disruptions to the caregivers’ life. Coping is defined as the cognitive and behavioural efforts aimed at controlling the demands imposed by the stressors.

Appraisal can be influenced by mediating factors such as the caregiver’s personality, quality of family relationships or degree of social support. The outcome is the result of an interaction between the appraisal by the caregiver and the caregiver’s coping strategies.

Studies have demonstrated that the caregiving burden is a robust predictor of psychological distress.3,9-12 The negative appraisal, as measured in the Experience of Caregiving Inventory (ECI)3, has been proven a strong predictor of caregiver morbidity.9,12,13 The positive potential of the caregiving experience has been relatively neglected. Caregivers report positive aspects in their personal experience such as feelings of gratification, love, and pride.14,15 Greenberg et al16 reported that patients provide substantial help and companionship to their families.

Family members of first-episode patients experience distress and difficulties.17 One of the first studies on caregiving in first-episode psychosis18 categorised 77% of the studied caregivers as ‘psychiatric cases’. Tennakoon et al11 reported that 12% of caregivers present with psychiatric morbidity. Caregivers are distressed by difficult behaviours and negative symptoms in participants11 and also by disorganisation symptoms.19 Chinese caregivers also encounter significant difficulties and suffer distress when taking care of their ill relatives.20-22 In a cross-cultural study, the disruption of family relationships caused by the patient’s mental illness was more severe in Chinese families than their Malay and Indian counterparts.23 Taking care of male patients, being a female caregiver, patients’ difficult and bizarre behaviours, negative and positive symptoms were all related to caregiving distress in relatives of schizophrenic patients.24,25 Local research has found that negative appraisal of the experience was predicted by the functional status of the patients, while positive appraisal was related to the employment status of patients.26

A qualitative study into the experiences of family caregivers caring for relatives with serious mental illness in Hong Kong reflected several domains of distress.27 Caregivers felt stigmatised. Another study demonstrated that ethnic Chinese caregivers were more affected by the stigma of mental illness than were Euro-Canadian caregivers.28

The present study aimed to examine the different dimensions of the caregiving experience among Chinese family members of first-episode psychosis patients and to study the relationships between demographic / clinical variables and the caregiving experience.

Methods

Design

This was a cross-sectional study examining the relationships between the caregiving experience and the clinical variables of patients and relatives attending a First Episode Psychosis Clinic in the Hong Kong Special Administrative Region (HKSAR).

Participants

Patients attending the First Episode Psychosis Clinic at the Prince of Wales Hospital in HKSAR were recruited along with their main caregivers. This clinic is participating in the ‘Early Assessment for Young People with First Episode Psychosis Programme’. Patients are young people aged 15-25 years with recent (within 2 years) onset of psychosis. People on the programme are followed up regularly for up to 3 years with constant contact and support from key workers. The main caregiver was defined as the person who has had face- to-face contact with the patient for at least 10 hours per week over the previous 3 months. Patients with learning disabilities or organic brain syndromes were excluded.

Assessment

The authors administered the Positive and Negative Syndrome Scale (PANSS)29 to all patients to ascertain the severity of their current psychopathology. Assessments were conducted within 2 weeks of exploration of the caregiving experience of respective caregivers. Caregivers were asked to complete the ECI. The ECI is a 66-item self-report measure of the caregiver’s appraisal of the caregiving experience. It was developed by Szmukler et al3 based on the ‘stress-coping’ paradigm.30 It consists of 52 items comprising 8 negative appraisal subscales, including ‘difficult behaviours’ (n1), ‘negative symptoms’ (n2), ‘stigma’ (n3), ‘problems with services’ (n4), ‘effects on family’ (n5), ‘need to back up’ (n6), ‘dependency’ (n7), and ‘loss’ (n8). The remaining 14 items contribute to 2 positive appraisal subscales including ‘positive personal experiences’ (p1) and ‘good aspects of the relationship’ (p2). All the items are scored on a 5-point Likert scale from 0 (never) to 4 (always). An overall positive appraisal (ECI pos) and negative appraisal (ECI neg) scores are calculated by summating the respective subscores. The Chinese version of the ECI has been validated and has satisfactory psychometric properties.31

Statistical Analyses

The statistical analyses were performed with the Statistical Package for the Social Sciences for Windows (SPSS 14.0 version). Relationships between the demographic and clinical data, and the different subscores were computed using the Spearman rho correlation coefficient (r) and t statistics / analysis of variance for continuous variables. Association tests for categorical variables were performed using Chi-square statistics. Variables that reached statistical significance (p < 0.05) in the univariate analyses entered a linear regression model with a negative appraisal score on the ECI as the outcome variable.

Results

A total of 139 caregivers from the 232 eligible caregiver- patient pairs completed the questionnaires, giving an overall response rate of 60%. We retrieved the basic demographic information and psychiatric diagnoses of the 93 patients whose caregivers did not participate. No statistically significant differences were found in the age / gender distribution and psychiatric diagnoses between the 2 groups.

Socio-demographic Characteristics

Sixty three (45%) patients were males and 76 (55%) females. The mean age was 21.4 (standard deviation [SD], 3.7) years and 81% had secondary level education. One- third were students, one-third employed, while the rest were unemployed; 98% were living with the caregiver and 62% were residing in public housing estates, and the rest lived in private residential apartments. Two were married and living with their partners.

The caregivers’ mean age was 49.6 (range, 17-72; SD, 9.54) years; 110 (79%) were female, 126 (91%) [24 fathers and 102 mothers] were parents. Eight were siblings and 3 were spouses. Forty percent had received a primary education, 27% finished lower secondary education, 21% received a higher secondary education, and 7% finished tertiary education. The caregiver’s demographic variables showed no significant differences across the different diagnostic groups.

Clinical Characteristics of Patients

Sixty seven (48%) were diagnosed with schizophrenic spectrum disorders (schizophrenia, schizoaffective disorder, acute and transient psychotic spectrum disorder, and delusional disorder). Bipolar affective disorders and psychotic depression accounted for 15% (n = 21) and 10% (n = 14), respectively. The mean duration of untreated psychosis (DUP) was 8.9 (SD, 11.8) months. Eighty seven (63%) of the patients had been admitted to hospital before. More patients had been admitted to psychiatric inpatient units in the bipolar affective disorder group than in other diagnostic entities (χ² = 18.401; p < 0.001). Five patients had co-morbid substance abuse, 9 had a history of violence, and 9 had a history of deliberate self-harm; 32% had a positive family history of psychiatric illness.

Associations between Demographic / Clinical Variables and the Experience of Caregiving Inventory Scores

Table 1 lists the socio-demographic and clinical variables that have significant associations with the ECI subscales, and the positive and negative appraisals of caregivers in the univariate analyses.

Associations between Carer Demographic Data and Experience of Caregiving Inventory Scores

There were no associations between ECI subscales and caregivers’ educational levels, religion, and type of accommodation. Single caregivers gave higher ratings than married caregivers on the difficult behaviours subscale (13.11 vs. 10.33; p = 0.04) and negative symptoms subscale (11.11 vs. 8.59; p = 0.04). Older caregivers, female caregivers, and mothers tended to experience more stigma, reflected by their higher stigma subscale scores (r = 0.192; p = 0.02).

There was no association between ECI subscales and patients’ marital status, age, educational level, and whether or not the patient lived with the caregiver. Patient unemployment was associated with significantly higher scores in the difficult behaviours subscale (p = 0.02), negative symptoms subscale (p = 0.002), effects on family subscale (p = 0.02), and also the ECI neg score (p = 0.02). Caregivers of female patients gave higher scores on the dependency subscale (mean, 10.97 vs. 9.16; p = 0.01).

Clinical Profiles and Experience of Caregiving Inventory Scores

A history of deliberate self-harm was significantly associated with higher scores on several subscales including difficult behaviours (16.67 vs. 10.49; p = 0.004), negative symptoms (13.56 vs. 8.78; p = 0.01), dependency (13.78 vs. 9.90; p = 0.004), loss (11.89 vs. 8.25; p = 0.02), and ECI neg score (mean: 88.23 vs. 68.67; p = 0.04).

The PANSS total score was associated with difficult behaviours (r = 0.305; p < 0.001), negative symptoms (r = 0.29; p = 0.001), stigma (r = 0.20; p = 0.02), effects on family (r = 0.25; p = 0.004), dependency (r = 0.17; p = 0.05), loss (r = 0.19; p = 0.03), and the ECI neg score (mean, 88.23 vs. 68.67; p = 0.04).

A higher positive symptom score was associated with difficult behaviours (r = 0.23; p = 0.01), negative symptoms (r = 0.25; p = 0.003), and ECI neg scores (r = 0.18; p = 0.04). It was also negatively associated with positive personal experiences (r = –0.239; p = 0.01). A negative symptom score was related to stigma (r = 0.19; p = 0.02), effects on the family (r = 0.21; p = 0.01), and ECI neg scores (r = 0.21; p = 0.01). The duration of treatment was negatively related to the negative symptom subscale (r = –0.19; p = 0.03). A longer DUP was associated with a higher scores for difficult behaviours (r = 0.345; p < 0.001), negative symptoms (r = 0.27; p = 0.001), loss (r = 0.17; p = 0.05), and ECI neg score (r = 0.24; p = 0.004).

Three ECI subscales had significant associations with the presence of a family history of psychiatric illness including effects on the family (7.95 vs. 5.69; p = 0.004), loss (10.18 vs. 7.69; p = 0.002), and good aspects of the relationship (79.59 vs. 65.47; p = 0.01). The ECI neg score was also higher in families with a history of psychiatric disorders (79.59 vs. 65.47; p = 0.01). A significant positive correlation was found between the ECI pos and ECI neg scores (r = 0.29; p < 0.001).

Significant Predictors of Negative Appraisal Score

Based on the results of the univariate analyses, the negative appraisal score on ECI was regressed on predictor variables including the functional level of the patient, DUP, history of deliberate self-harm, family history of psychiatric illness, positive symptom score on PANSS, negative symptom score on PANSS in a backward linear regression model. A negative symptom score in the PANSS, history of deliberate self-harm, and a family history of psychiatric illness emerged as significant predictor variables (adjusted R² of model = 0.135) [Table 2].

Discussion

Female caregivers and mothers reported higher levels of stigma. Women being expected to be primary caregivers has been reported in a previous study.32 A local study on the caregivers of the chronically mentally ill also reported that 40% were mothers.22 Chinese mothers take a central role in care of their children. If their children become mentally ill and exhibit any type of misbehaviour, mothers may be seen as failing to provide proper care and guidance.25 The stigma affects not only the patient but also the family, especially the caregiver. These cultural beliefs may also explain the association between older caregivers and higher levels of stigma as older people may be more affected by traditional beliefs.

Previous studies found that caring for younger patients is associated with higher negative appraisal levels.9 In this study, there was no significant relationship between the patients’ age and positive or negative appraisals of caregiving. This is possibly due to the comparatively narrow age range of the patients that most were young.

Caring for female patients was associated with positive appraisal, a result similar to a study33 where parents of mentally ill daughters reported a more positive relationship, as daughters provide more companionship to their parents. Relatives of unemployed patients reported more difficult behaviours, negative symptoms, effects on family, and had higher levels of negative appraisal. Harvey et al9 reported similar findings. Chinese families consider a lack of steady employment a chronic source of frustration and tension.23,26

The ECI subscales were differentially related to the PANSS negative and positive symptoms. Caregivers of patients with more severe negative symptoms had higher scores on the ECI subscales for negative symptoms, stigma, and effects on the family. This was also significantly associated with negative appraisal. This finding, that caregivers of first-episode psychosis patients are particularly affected by negative symptoms, is supported by a previous first-episode psychosis study.11 Negative symptoms causing distress in Chinese caregivers has also been reported.25 The high value placed on hard work, perseverance, and patience34 may partly explain why the caregivers find it hard to tolerate the lack of volition in their mentally ill relatives with negative symptoms. Severity of the illness was associated with negative appraisal. The relationship between the severity of the symptoms, positive and negative symptoms and a negative caregiving experience has been reported in previous studies.14,35-38 Psychotic symptoms often manifest as bizarre and difficult behaviours and these behaviours can be embarrassing and stigmatising for caregivers. Delusions can be directed at caregivers. Since caregivers and family are in direct contact with their ill relative, it is not surprising that family relationships are affected.25 As the patient is no longer behaving the way they used to, caregivers experience the loss of their normal relative.25 Positive correlations between negative and positive appraisals of caregiving were found.9,26 One explanation for this may be that while a committed relative may perceive greater adversity they may, at the same time, experience greater gratification.

There are limitations to this study. This was a cross- sectional study and has been unable to investigate causal relationships and changes in appraisals of caregiving over time. The focus was on the main caregivers’ experiences, hence our caregiving data should not be interpreted as informing about caregiving at family level. Forty percent of eligible patient-caregiver pairs failed to enrol in our study. Although the patients’ characteristics in the group who refused to participate did not differ from those in the enrolled group, we had inadequate information to determine whether this constituted significant selection bias. The participants in this study were recruited from a tertiary psychiatric care setting, from a specific programme — Young People with First Episode Psychosis (EASY Clinic) — that emphasises psychosocial interventions and family support. Their caregiving experience is likely to be different from that of caregivers of patients receiving usual psychiatric care.

Our findings have implications for the care of patients with first-episode psychosis. Interventions should aim at better symptom control, and at decreasing the impact of negative symptoms on both patients and caregivers. There should be more focus on at-risk groups including families of patients with a history of self-harm and families with other mentally ill members. A more culturally sensitive service would also be beneficial for specific caregiver groups.

References

  1. Hoenig J, Hamilton MW. The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry 1966;12:165-76.
  2. Schene AH. Objective and subjective dimensions of family burden. Towards an integrative framework for research. Soc Psychiatry Psychiatr Epidemiol 1990;25:289-97.
  3. Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S. Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol 1996;31:137-48.
  4. Maurin JT, Boyd CB. Burden of mental illness on family: a critical review. Arch Psychiatr Nurs 1990;4:99-107.
  5. Platt S. Measuring the burden of psychiatric illness on the family, an evaluation of some rating scales. Psychol Med 1985;15:383-93.
  6. Pai S, Kapur RL. The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry 1981;138:332- 5.
  7. Tessler RC, Fisher GA, Gamache GM. The Family Burden Interview Schedule; Manual. Social and Demographic Research Institute, University of Massachusetts, Amherst; 1992.
  8. Folkman S, Lazarus RS. If it changes it must be a process: study of emotion and coping through three stages of a college examination. J Pers Soc Psychol 1985;48:150-70.
  9. Harvey K, Burns T, Fahy T, Manley C, Tattan T. Relatives of patients with severe psychotic illness: factors that influence appraisal of caregiving and psychological distress. Soc Psychiatry Psychiatr Epidemiol 2001;36:456-61.
  10. St-Onge M, Lavoie F. The experience of caregiving among mothers of adults suffering from psychotic disorders: factors associated with their psychological distress. Am J Community Psychol 1997;25:73-94.
  11. Tennakoon L, Fannon D, Doku V, O’Ceallaigh S, Soni W, Santamaria M, et al. Experience of caregiving: relatives of people experiencing a first episode of psychosis. Br J Psychiatry 2000;177:529-33.
  12. Martens L, Addington J. The psychological well-being of family members of individuals with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2001;36:128-33.
  13. Joyce J, Leese M, Szmukler G. The Experience of Caregiving Inventory: further evidence. Soc Psychiatry Psychiatr Epidemiol 2000;35:185-9.
  14. Bulger MW, Wandersman A, Goldman CR. Burdens and gratifications of caregiving: appraisal of parental care of adults with schizophrenia. Am J Orthopsychiatry 1993;63:255-65.
  15. Veltman A, Cameron J, Stewart DE. The experience of providing care to relatives with chronic mental illness. J Nerv Ment Dis 2002;190:108- 14.
  16. Greenberg JS, Greenley JR, Benedict P. Contributions of persons with serious mental illness to their families. Hosp Community Psychiatry 1994;45:475-80.
  17. Addington J, Coldham EL, Jones B, Ko T, Addington D. The first episode of psychosis: the experience of relatives. Acta Psychiatr Scand 2003;108:285-9.
  18. The Scottish First Episode Schizophrenia Study. IV. Psychiatric and social impact on relatives. The Scottish Schizophrenia Research Group. Br J Psychiatry 1987;150:340-4.
  19. Wolthaus JE, Dingemans PM, Schene AH, Linszen DH, Wiersma D, Van Den Bosch RJ, et al. Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis 2002;190:241-7.
  20. Liu M, Lambert CE, Lambert VA. Caregiver burden and coping patterns of Chinese parents of a child with a mental illness. Int J Ment Health Nurs 2007;16:86-95.
  21. Wong DF, Tsui HK, Pearson V, Chen EY, Chiu SN. Family burdens, Chinese health beliefs, and the mental health of Chinese caregivers in Hong Kong. Transcult Psychiatry 2004;41:497-513. Erratum in: Transcult Psychiatry 2006;43:157.
  22. Yip KS. The situation of family caregivers for people with mental illnesses in Hong Kong. Psychiatr Rehabil J 2004;28:136-41.
  23. Bentelspacher CE, Chitran S, Rahman MB. Coping and adaptation patterns among Chinese, Indian, and Malay families caring for a mentally ill relative. Fam Soc 1994;75:287-94.
  24. Kung W. The illness, stigma, culture, or immigration? Burdens on Chinese American Caregivers of patients with schizophrenia. Fam Soc 2003;84:547-57.
  25. Wong DF. Stress factors and mental health of carers with relatives suffering from schizophrenia in Hong Kong: implications for culturally sensitive practices. Br J Soc Work 2000;30:365-82.
  26. Lau YK, Pang AH. Caregiving experience for Chinese caregivers of persons suffering from severe mental disorders. Hong Kong J Psychiatry 2007;17:75-80.
  27. Ip GS, Mackenzie AE. Caring for relatives with serious mental illness at home: the experiences of family carers in Hong Kong. Arch Psychiatr Nurs 1998;12:288-94.
  28. Ryder AG, Bean G, Dion KL. Caregiver responses to symptoms of first onset psychosis: a comparative study of Chinese- and Euro-Canadian families. Transcult Psychiatry 2000;37:225-36.
  29. Stanley RK. Positive and Negative Syndromes in Schizophrenia: Assessment and Research. New York: Brunner/Mazel; 1991.
  30. Joyce J, Leese M, Kuipers E, Szmukler G, Harris T, Staples E. Evaluating a model of caregiving for people with psychosis. Soc Psychiatry Psychiatr Epidemiol 2003;38:189-95.
  31. Lau YK, Pang AH. Validation of the Chinese version of Experience of Caregiving Inventory (ECI) in caregivers of persons suffering from severe mental disorders. Hong Kong J Psychiatry 2007;17:24-31.
  32. Scazufca M, Kuipers E. Impact on women who care for those with schizophrenia. Psychiatric Bulletin 1997;21:469-71.
  33. Pickett SA, Greenley JR, Greenberg JS. Off-timedness as a contributor to subjective burdens for parents of offspring with severe mental illness. Fam Relat 1995;44:195-201.
  34. Hui CH, Tan CK. Employee motivation and attitudes in the Chinese workforce. In: Bond MH, editor. The handbook of Chinese psychology. Hong Kong: Oxford University Press; 1996.
  35. Perlick DA, Rosenheck RA, Kaczynski R, Swartz MS, Cañive JM, Lieberman JA. Components and correlates of family burden in schizophrenia. Psychiatr Serv 2006;57:1117-25.
  36. Ohaeri JU. The burden of caregiving in families with a mental illness: a review of 2002. Curr Opin Psychiatry 2003;16:457-65.
  37. Biegel DE, Milligan SE, Putman PL, Sung LY. Predictors of burden among lower socioeconomic status caregivers of persons with chronic mental illness. Community Ment Health J 1994;30:473-94.
  38. Roick C, Heider D, Toumi M, Angemeyer MC. The impact of caregivers’ characteristics, patients’ conditions and regional differences on family burden in schizophrenia: a longitudinal analysis. Acta Psychiatr Scand 2006;114:363-74.
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