Welcome to the Schizophrenia Resource Centre

Welcome, this website is intended for healthcare professionals in EMEA with an interest in the treatment of schizophrenia. By clicking the link below you are declaring and confirming that you are a healthcare professional

You are here

Coping strategies in carers of young people with a first episode of psychosis

Schizophrenia Research, 1-3, 146, pages 118 - 124

Abstract

Background

Carers of young people with first episode psychosis (FEP) often face burden. Understanding ways in which carers cope is not only important for providing support to them but might maximise patient outcomes. The aim of this study was to examine strategies carers use to cope with the burden of caring for a young person with FEP.

Methods

The study was part of a randomized controlled trial focusing on the effectiveness of a problem-solving bibliotherapy intervention for carers of FEP patients, in terms of promoting coping and reducing psychological distress. Baseline data on the Ways of Coping (WOC) scale was available for 124 carers aged between 18 and 66 years. Principal component analysis with PROMAX rotation was used to determine the number of factors that could be used to characterise coping behaviour. Regression analyses were used to determine how the factors were related to carers' demographics, burden, psychological well-being and expressed emotion.

Results

Approximately half of the carers reported that they frequently use positive coping techniques such as self-talk, active problem solving, and positive reframing.

The factor analysis yielded five factors: (i) cognitive-escape coping; (ii) optimistic coping; (iii) seeking connections; (iv) tension reduction; and (v) distancing. The relationships between these factors and demographic characteristics, carers' perception of burden, expressed emotion, and psychological distress are reported.

Conclusions

Avoidance coping strategies are related to psychological distress, emotional over-involvement, and increased carer burden. Interventions facilitating the use of adaptive problem solving and positive re-appraisal will promote carer coping and reduce psychological distress.

Keywords: First episode psychosis, Carers, Psychological distress, Coping, Expressed emotion.

1. Introduction

Coping has been conceptualised as changing one's cognitions and behaviour in order to address stressful situations ( Folkman and Lazarus, 1985 ). A range of coping strategies are available including avoidance, regulating emotional responses, or actively addressing the cause of the problem. The stress-coping model proposes that appraisal of problems influences coping strategies employed and the subsequent distress experienced ( Folkman and Lazarus, 1985 ). This classic model has been influential in psychology for several decades.

Carers of people with psychosis face significant emotional, psychological, and economic burden (Kuipers et al, 2010, McCann et al, 2011a, and McCann et al, 2011b). Understanding ways in which carers cope with this burden is not only important for providing them with support, but may improve patient outcomes ( O'Brien et al., 2009 ).

An array of studies has investigated coping in carers of patients with either severe mental illness or chronic schizophrenia; several key findings have been noted. First, carers use a range of strategies to deal with behavioural change associated with mental illness ( Birchwood and Cochrane, 1990 ). Coping strategies may be either problem-focused (e.g., problem-solving) or emotion-focused (e.g., avoidance; Folkman and Lazarus, 1985 ). Second, coping may differ according to the stage of illness. Avoidance is more likely to be used by carers of chronic patients compared to those caring for patients early in illness course ( Gerson et al., 2011 ). Third, poor coping in carers of patients with chronic illness has been be associated with carer distress, depression and anxiety ( Scazufca and Kuipers, 1999 ), negative appraisal of the care-giving experience (Scazufca and Kuipers, 1999 and Onwumere et al, 2011b) and high expressed emotion (EE, Birchwood and Cochrane, 1990 and Scazufca and Kuipers, 1999).

Understanding carers' coping when a young person first presents with psychosis has received scant attention; only a few studies have been noted (e.g., Tennakoon et al, 2000, Gerson et al, 2011, and Onwumere et al, 2011b). Most patients with FEP reside with, and are dependent upon, their families. Given the majority of first develop psychosis in late adolescence/early adulthood, many carers face problems that are at odds with the expected developmental trajectory of growing independence in their child. Carer distress is prominent ( Onwumere et al., 2011b ), including symptoms resembling post-traumatic stress disorder ( Onwumere et al., 2011a ). The carer also has to confront issues of stigma and guilt (McCann et al, 2011a and McCann et al, 2011b). Care-giving is burdensome, demanding and unpredictable (McCann et al, 2011a and McCann et al, 2011b). Interventions are required before use of poor coping strategies becomes entrenched and poor clinical outcomes for the carer and the patient ensue ( Scazufca and Kuipers, 1999 ).

Gerson et al. (2011) conducted a small study of family members of 11 ultra high risk and 12 recent onset psychosis patients. Coping was assessed using a modified version of the Carver's Coping Orientations to Problems Experienced questionnaire (COPE, Carver et al., 1989 ). This questionnaire assesses 14 coping dimensions. Both groups of carers were more likely to use approach coping strategies such as seeking support and expressing emotions. There was less reliance on avoidant coping strategies such as denial and disengagement.

Onwumere et al. (2011b) examined avoidant coping in two different groups of carers; carers of patients with recent (n = 60) and long-term (n = 81) non-affective psychosis. The COPE inventory was used to assess coping. No associations were found between avoidance coping and a range of variables including carer demographic variables (sex, age, or living with the patient) and patient characteristics (sex, age, length of illness). Avoidance coping, however, was associated with greater levels of carer distress, even after controlling for length of illness. However, neither Gerson et al. (2011) nor Onwumere et al. (2011b) considered the full range of coping strategies and their relationship with carer burden, distress and EE.

Most studies conducted to date, have used small and unrepresentative samples of carers of chronic patients with schizophrenia. The age of the patient and duration of illness are other potential confounds; the dynamics of the patient–carer relationship is different when the patient is young and early in illness course compared to an older patient with unremitting illness ( Gerson et al., 2011 ). Most FEP studies have included patients of a wide age range (e.g., 18–65 years). The impact of developmental changes on the patient–carer relationship needs to be considered.

The aim of the study was threefold. First, to characterise coping strategies carers use when caring for a young person during the first year after commencement of treatment for a FEP; second, to examine how coping strategies relate to the demographic characteristics of the carer and patients' illness characteristics; and third, to examine how coping relates to carer burden, psychological distress and EE. It was hypothesized that carers would use both positive and negative coping strategies. Use of positive coping strategies would be associated with lower levels of carer burden, psychological distress, and EE. Conversely, use of avoidance coping strategies would be associated with higher levels of burden, psychological distress, and EE.

2. Methods

2.1. Design

The study was part of a clinical trial focusing on the effectiveness of a problem-solving bibliotherapy intervention (PSBI) for 124 carers of FEP patients ( McCann et al., in press ). Baseline data was the focus of this paper ( Table 1 ).

Table 1 Characteristics of 124 carers of clients with FEP.

    Total
    (n = 124)
Gender % female % (n) 82.3 (102)
Age M (SD) 47.2 (8.3)
Relationship with FEP patient % parent % (n) 91.1 (113)
Living with client % yes % (n) 82.3 (102)
Country of birth % other than Australia % (n) 34.7 (43)
Length of time in Australia if born in other country (in months) % (n) 345.0 (187.5)
Language spoken at home % English % (n) 91.9 (113)
Work status    
 Professional/management/business % (n) 35.5 (44)
 Clerical/trade/retail/hospitality % (n) 25.0 (31)
 Other % (n) 39.5 (49)
Still working in occupation % yes % (n) 79.2 (95)
Highest level of education    
 Primary school % (n) 4.8 (6)
 High school % (n) 35.5 (44)
 TAFE % (n) 21.8 (27)
 Tertiary education % (n) 37.9 (47)
Yearly household income    
 Below $AUD 20,000 % (n) 15.0 (18)
 Between $AUD 20,000–$AUD 50,000 % (n) 38.3 (46)
 Between $AUD 51,000–$AUD 100,000 % (n) 32.5 (39)
 Above $AUD 100,000 % (n) 14.2 (17)
Characteristics of FEP patient    
 Time since diagnosis of psychosis (in months) M (SD) 10.7 (8.8)
 Duration of support from early intervention service (in months) M (SD) 8.3 (6.5)
 Number of contacts with early intervention service M (SD) 2.6 (2.5)
 Phase of recovery    
 Acute % (n) 14.7 (17)
 Recovery % (n) 85.3 (99)

2.2. Participants and setting

First-time carers were recruited through two specialist early intervention (SEI) services in Melbourne, Australia: Orygen Youth Health (OYH) and the Recovery and Prevention of Psychosis Service (RAPPS). Young people had a first episode of a DSM-IV psychotic disorder and were aged between 15 and 25 years.

Inclusion criteria included: (i) first-time carer (no previous care-giving role with any other individual); (ii) in carer role for less than 3-years; and (iii) ability to communicate and understand English. Exclusion criteria were: (i) had been in receipt of family therapy; and (ii) self-reported recent personal history of serious and enduring mental illness.

2.3. Measures

2.3.1. Demographic data

A range of carer demographics were collected, such as age, gender, relationship status with patient, and country of birth.

2.3.2. Patient illness characteristics

Details on length of time since diagnosis, duration of SEI support, number of contacts with the SEI service, and stage of illness were documented.

2.3.3. Coping

Coping style was assessed using the 28-item version ( MacCarthy and Brown, 1989 ) of Folkman and Lazarus' (1985) Ways of Coping Checklist (WOC). Each item was rated on a five-point scale with scores ranging between 0 (never) and 4 (all of the time). Carers are asked how often they have chosen to cope in particular way in the last 3 months. Examples include “tried to take my mind off things by smoking, drinking or taking pills to relax” or “prepared for the worst”. The WOC has been used in some studies of carers with chronic schizophrenia (MacCarthy et al, 1989, Scazufca and Kuipers, 1999, and Chadda et al, 2007) and has only been used in one study of carers of patients with FEP ( Tennakoon et al., 2000 ). Most of the studies have used MacCarthy and Brown's (1989) version of the WOC, which was adapted for carers of patients with Parkinson's disease. The psychometric properties of this scale for carers of FEP patients are largely unknown.

2.3.4. Burden

The Experience of Care-Giving Inventory (ECI, Szmukler et al., 1996 ) is a self-report questionnaire comprising 66-items and 10 subscales measuring negative and positive aspects of care-giving. Carers are asked to rate the frequency of thoughts about caregiving over a 1 month period on a four point scale with 0 (never) to 4 (nearly always). Example items include “what sort of life he/she might have had” or “feeling unable to tell anyone of the illness”. Higher scores on negative subscales and lower scores on positive subscales indicate negative appraisal. The ECI has been previously used with FEP carers, including in our own work ( Gleeson et al., 2010 ).

2.3.5. Psychological distress

The Kessler Psychological Distress Scale (K10, Andrews and Slade, 2001 ) comprises 10 items rated on a 5-point Likert scale.

2.3.6. Expressed emotion

The Family Questionnaire ( Wiedemann et al., 2002 ) is a 20-item questionnaire assessing EE. Two subscale scores are derived; critical comments (CC) and emotional over-involvement (EOI). CC refers to unfavourable statements about the personality or behaviour of the client whereas EOI involves over-intrusiveness, over-protectiveness and over-identification with the client. Examples of items related to CC include “he/she irritates me” or “he/she does some things out of spite (annoying, irritating)”. Examples of EOI items include “I often think about what is to become of him/her” or “I'm very worried about him/her”. Higher scores indicate higher EE. It has been well validated ( Wiedemann et al., 2002 ) and has been used with carers of FEP patients ( Gleeson et al., 2010 ).

2.4. Procedure

All carers provided written informed consent; the young person provided verbal consent. Case managers were contacted when a client reached nine weeks of treatment to determine eligibility. This timeframe allowed engagement with the client and his/her family as well as stabilization of their psychosis. Once consent was obtained, carers were assigned to either the PSBI or treatment as usual group. Participants then completed the baseline questionnaires; either via mail or email, or could provide responses to research officers by telephone. Inter-rater reliability was maintained by training research officers to adhere to a written protocol for communicating with, and collecting data from, participants.

2.5. Data analysis

Principal component analysis was used to determine the underlying structure of the WOC. Data screening was conducted to test for linearity, multicollinearity, singularity, and multivariate outliers. Scatterplots, communalities, the Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy, and Mahalanobis distances, were used to test each of these assumptions respectively. Factor extraction was guided by examination of the Scree plot. PROMAX rotation technique was employed. Composite scores were derived for each WOC factor based on the regression method (with a M = 0, SD = 1).

Composite scores were regressed against each of the measures of interest (demographic, burden, psychological distress and EE) using multivariate and logistic regression models. Forward stepwise technique was used to identify which aspects of coping best related to these variables.

3. Results

3.1. Sample characteristics

There were 124 carers aged between 18 and 66 years. Most were female (82.3%) and a parent (91.1%). Although the primary language spoken at home was English for most carers (91.9%), there were 11 cases who spoke other languages. Of these, only six documented their primary language; a diverse range of languages were noted, including Albanian, Vietnamese, Oromo, Punjabi, Tamil, and Turkish. For the patient, the average time since diagnosis was 10.7 months (SD = 8.8) and duration of support from a SEI was 8.3 months (SD = 2.6). Just over 80% of carers lived with the patient.

3.2. Data screening

For the WOC, one case was identified as a multivariate outlier. This case responded inconsistently to items and was removed from the proceeding analyses.

3.3. Coping strategies

The KMO measure of sampling adequacy was 0.69, exceeding the recommended criterion of 0.60. Bartlett's test was significant, (χ2(378) = 1006.15, p < .001).

Five factors were extracted. Four items (‘cheerful company’, ‘prayed’, ‘tried to keep feelings to myself’, and ‘work out problems with family or friends’) were excluded because of low shared common variance with other items, a primary factor loading lower than 0.40, or cross loadings across factors of 0.30.

The five factors were: (i) cognitive-escape coping; (ii) optimistic coping; (iii) seeking connections; (iv) tension reduction; and (v) distancing. The factors accounted for 50.1% of the variance (see Table 2 ). Cronbach's alphas ranged from 0.61 (distancing) to 0.75 (optimistic coping).

Table 2 Factor loadings, communalities (h2) and percent of variance for principal components analysis with PROMAX rotation for the WOC questionnaire.

Item F1 a F2 a F3 a F4 a F a 5 h 2 % (n) using strategy often-all the time
Daydreamed or wished for miracle .77         .49 37.1 (46)
Hope that a new treatment would be available .66         .44 40.7 (50)
Prepared for worst .66         .34 28.3 (25)
Try not to think .62         .39 21.2 (26)
Felt that there was little to change this situation .49         .52 37.1 (46)
Told myself what was happening was not really all that upsetting   .78       .44 33.1 (41)
Told myself things would work out in the end   .77       .52 54.9 (68)
Other things in life to be thankful for   .64       .51 50.8 (63)
Carried out practical things   .62       .59 48.0 (59)
Tried to work out problems   .52       .62 51.6 (64)
Tried to get emotional support     .72     .60 25.0 (31)
Find people who experienced the same problems     .63     .59 8.9 (11)
Ask professionals, friends or relatives for advice     .61     .41 27.4 (34)
Discovered a new important belief or truth about life     .60     .44 26.0 (32)
Asked someone to do something practical     .56     .50 16.2 (20)
Smoking, drinking or taking pills       .69   .57 17.0 (8)
Avoided other people       .68   .52 17.1 (21)
Practical things to help       .56   .46 19.3 (24)
Criticised or blamed myself       .51   .61 25.8 (32)
Took feelings out on someone       .45   .62 11.3 (14)
Tried to step back from situation         .78 .59 22.1 (27)
Relationship less important         .64 .33 5.6 (7)
Did other activities such as reading or TV         .59 .42 37.1 (46)
Tried to take my mind off by eating         .48 .48 14.5 (18)
 Percent of variance 19.41 11.39 7.26 6.23 5.77    
 Cronbach's alpha .74 .75 .65 .70 .61    

a Factor labels.

  • F1 Cognitive-escape coping.
  • F2 Optimistic coping.
  • F3 Seeking connections.
  • F4 Tension reduction.
  • F5 Distancing.

 

The percentages of carers using a strategy ‘often’ or ‘all the time’ (score of 3 or above) were ascertained (see Table 2 ). The most frequently used coping strategies were ‘told myself that things would work out in the end’ (54.9%), ‘tried to work out problems’ (51.6%), and ‘other things in life to be thankful for’ (50.8%).

3.4. Coping and carer demographic

Tension reduction coping was less likely to be used by carers whose primary language spoken at home was not English (Wald χ2(1) = 4.75, p = .029). Coping was unrelated to any other demographic characteristics.

3.5. Patient characteristics

Greater use of tension reduction techniques was associated with shorter illness duration (β = − .20, t(122) = − 2.26, p = .026), less time in the SEI service (β = − .22, t(122) = − 2.53, p = .013), and more contacts with SEI staff (β = .24, t(121) = 2.82, p = .006). Seeking connections was associated with greater number of staff contacts (β = .24, t(121) = 2.77, p = .006).

3.6. Appraisal of burden

The coping factors explained between 6% (good aspects of relationships) and 46% (total negative score) of care-giving burden (as measured by ECI, see Table 3 ). Difficult behaviours was positively associated with distancing, tension reduction and cognitive-escape coping but was negatively associated with optimistic coping. Burden related to negative symptoms was related to use of tension reduction and distancing.

Table 3 Outcomes of forward stepwise multiple regression analyses with coping strategies regressed against each of the scales of the ECI.

ECI subscale Coping strategy R2 adj R2 B β sr2 p value
Negative
Difficult behaviours Distancing 0.35 0.32 2.58 0.35 0.11 < .001
Tension reduction     2.71 0.36 0.12 < .001
Cognitive-escape coping     1.34 0.18 0.03 .028
Optimistic coping     − 2.09 − 0.16 0.02 .039
Negative symptoms Tension reduction 0.25 0.24 2.28 0.40 0.16 < .001
Distancing     1.65 0.29 0.08 < .001
Stigma Cognitive-escape coping 0.21 0.20 1.89 0.41 0.17 < .001
Seeking connections     1.03 0.22 0.05 .007
Problems with services Cognitive-escape coping 0.29 0.27 1.87 0.33 0.10 < .001
Seeking connections     1.47 0.26 0.07 .001
Tension reduction     1.43 0.25 0.06 .002
Effects on the family Cognitive-escape coping 0.21 0.19 2.48 0.42 0.18 < .001
Seeking connections     1.14 0.19 0.04 .019
Need to back up Cognitive-escape coping 0.24 0.23 1.87 0.34 0.10 < .001
Distancing     1.02 0.18 0.03 .032
Tension reduction     0.95 0.17 0.03 .041
Dependency Cognitive-escape coping 0.35 0.33 1.46 0.38 0.14 < .001
Tension reduction     1.24 0.32 0.10 < .001
Seeking connections     0.65 0.17 0.03 .025
Loss Cognitive-escape coping 0.39 0.38 2.77 0.51 0.24 < .001
Tension reduction     1.39 0.25 0.06 .001
Total negative score Cognitive-escape coping 0.48 0.46 13.42 0.41 0.14 < .001
Tension reduction     10.80 0.33 0.10 < .001
Distancing     6.79 0.21 0.04 .004
Seeking connections     4.89 0.15 0.02 .028
 
Positive
Positive personal experiences Seeking connections 0.28 0.27 2.77 0.49 0.23 < .001
Cognitive-escape coping     1.54 0.27 0.07 .001
Tension reduction     − 1.08 − 0.19 0.03 .021
Good aspects of relationships Seeking connections 0.07 0.06 1.00 0.26 0.07 .004
Total positive score Seeking connections 0.24 0.22 3.11 0.37 0.12 < .001
Optimistic coping     1.93 0.23 0.04 .009
Tension reduction     − 1.52 − 0.18 0.03 .030

Cognitive-escape coping was the best predictor of carer burden in the domains of stigma, problems with services, effects on the family, need to back up, dependency, and loss. Seeking connections was related to stigma, effects on family dependency, positive personal experiences, and total positive score.

3.7. Psychological distress

Tension reduction, cognitive-escape and optimistic coping explained 50% of the variability in the K10 total score (see Table 4 ). Tension reduction was the best predictor of psychological distress.

Table 4 Outcomes of forward stepwise multiple regression analyses with coping strategies regressed against the K10 and each of the subscales of the FQ.

    R2 adj R2 B β sr2 p value
Psychological distress
K10 total Tension reduction 0.51 0.50 5.19 0.58 0.30 < .001
Cognitive-escape coping     3.01 0.34 0.10 < .001
Optimistic coping     − 1.23 − 0.14 0.02 .042
 
Expressed emotion
Critical comments Cognitive-escape coping 0.32 0.30 2.00 0.29 0.07 .001
Tension reduction     1.90 0.28 0.07 .001
Distancing     1.69 0.25 0.06 .002
Emotional over-involvement Cognitive-escape coping 0.47 0.46 2.85 0.51 0.24 < .001
Tension reduction     1.80 0.32 0.09 < .001
Seeking connections     0.87 0.15 0.02 .024

3.8. Expressed emotion

Coping strategies explained 30% and 46% of the variance in CC and EOI respectively. For both FQ subscales, cognitive-escape coping was the strongest predictor followed by tension reduction. Distancing was also predictive of CC and seeking connections was associated with EOI. These findings were robust, even after controlling for variability due to duration of illness or the number of service contacts.

4. Discussion

This is one of the few studies to examine coping in carers of young people with FEP. A diverse range of coping strategies was employed especially positive reframing (‘told myself things would work out in the end’) and active problem solving (‘tried to work out problems’). Carers supporting those in the early phase of psychosis are more likely to actively deal with the situation rather than use avoidance ( Gerson et al., 2011 ).

4.1. Coping dimensions

Five coping dimensions emerged. Cognitive-escape coping was the strongest dimension characterised by wishful thinking, cognitive avoidance and hopelessness. The second factor was optimistic coping, represented by positive thinking and proactive behaviour to address the problems. The third factor was seeking connections in terms of emotional and practical support, and advice from professionals, friends, or relatives. The fourth and fifth factors were labelled as tension reduction and distancing, respectively. Tension reduction was associated with minimising distress through a range of activities (e.g., substance use or avoiding people so to circumvent stigma). Distancing was associated with withdrawal from the situation, devaluing the relationship, or engaging in activities to take one's mind off the problems.

Cognitive-escape, tension reduction, and distancing are characteristics of avoidance coping. Cognitive-escape may diminish the impact of negative emotional responses ( Folkman and Lazarus, 1985 ). Tension reduction and distancing coping strategies are also used for minimising distress; however, behavioural rather than cognitive strategies are engaged. Avoidance might be constructive for addressing problems that resolve in due course, but are unhelpful if problems exacerbate ( Kuipers et al., 2010 ).

Carers whose primary spoken language was not English were less likely to use tension reduction coping. Carers of young people with FEP from culturally and linguistically diverse backgrounds are vulnerable to stigma related burden and tend to be secretive about the illness ( McCann et al., 2011a ). Further research on the interplay between cultural issues and carer coping is necessary if targeted family interventions are to be offered.

4.2. Appraisal of burden

Cognitive-escape was associated with greater levels of perceived burden with most aspects of the care-giving relationship; however, conversely it was related to greater emphasis on positive personal experiences. If carers avoid thinking about the negative aspects of psychosis, then they might have greater capacity to focus on the positives of relationships with their family and others.

Behavioural avoidance strategies were used to deal with negative symptoms. Negative symptoms are often the most burdensome symptoms for carers ( Fadden et al., 1987 ). Similarly, behavioural avoidance was used to deal with difficult behaviours, having to assist with activities of daily living, and difficulties associated with support services.

Seeking connections was associated with both positive and negative aspects of care-giving. Use of this strategy was associated with greater perceived stress regarding relationships with the patient, family members, service providers, and with the community. Psychosis can have a disastrous effect on carers' social networks, with carers being left with feelings of isolation and stigmatisation, especially if the patient's behaviour is disruptive ( McCann et al., 2011a ). Seeking connections may not be helpful for dealing with issues of stigma or dependency, leading to greater levels of burden ( Scazufca and Kuipers, 1999 ).

Seeking advice from others regarding illness course and treatment pathways may actually be beneficial in reducing stress ( Onwumere et al., 2011a ). A carer who has a positive relationship with the patient prior to illness onset and recognises that the patient is in crisis is more likely to source help from professionals and their social network ( Kuipers et al., 2010 ). This results a stronger relationship between the patient and carer, and, for the carer, less social isolation and burden ( Kuipers et al., 2010 ).

Optimistic coping was important for the appraisal of stress associated with difficult behaviours and may counteract the effects of avoidance. Positive reframing and less-self blame might mediate the relationship between distress and carers' beliefs regarding the extent the patient has control over illness behaviours ( Fortune et al., 2005 ). Optimistic coping is more likely to be used when the situation is appraised as amendable to change ( Folkman and Lazarus, 1985 ).

4.3. Psychological distress

Higher psychological distress was associated with use of tension reduction and cognitive-escape coping whereas optimistic coping was associated with lower distress. However, the relationship between coping and distress may not be unidirectional and a reciprocal relationship has been proposed ( Folkman and Lazarus, 1985 ). Carers with high levels of depression and anxiety often appraise patients' behaviour as more threatening, devalue their own coping skills, and resort to more poorly adaptive strategies ( Barrowclough and Parle, 1997 ).

4.4. Expressed emotion

A relationship between patients and carers' coping response and the evolution of EE has been proposed ( Birchwood and Cochrane, 1990 ). In our study, cognitive-escape and tension reduction coping were related to EE. Distancing was also related to CC. Carers with high EE are more likely to use avoidance strategies ( Scazufca and Kuipers, 1999 ). Carers who find patients' behaviour bothersome, make more CC, and doubt their ability to control the situation ( Barrowclough and Parle, 1997 ). Trying not to think about the situation or physically avoiding the patient might be the preferred coping strategies of these carers.

Seeking connection coping was related to higher levels of EOI. Carers with high EE often need to control a stressful situation ( Kuipers and Bebbington, 1988 ). They might become more involved with services or seek support from others in order to deal with the patient's illness.

Thus, there may be different predictors of CC and EOI early in illness course ( Alvarez-Jimenez et al., 2010 ). More research is required to investigate the direction of the relationship between coping and EE (Kuipers and Bebbington, 1988 and Birchwood and Cochrane, 1990). Although EE reduces over time in FEP families ( Gleeson et al., 2010 ), it is unclear to how these reductions relate to changes in coping.

4.5. Strengths and limitations

The current study is one of the largest to comprehensively examine coping in carers of young people with psychosis. Several limitations are noted. First, there were no details about patients' symptomatology and functioning. It would be useful to determine how carers' coping impacts on early illness course. Second, our sample mainly comprised women from an English speaking background; greater understanding of coping in male carers and carers from different cultures is required. Third, we only examined cross-sectional data. There is a limited research as to how carers' coping unfolds over time ( Birchwood and Cochrane, 1990 ); however, within the context of longitudinal data from our trial we will examine this issue more closely. Fourth, we only considered the relationship between carer coping and variables such as psychological distress. There is limited information available on the relationship of coping with other variables such as physical health, social and occupational functioning, and quality of life of carers. A final limitation is that we have not considered the inter-relationships between appraisal, distress, and EE. Kuipers et al. (2010) proposed a cognitive model in care-giving in psychosis in which the inter-relationships between these variables could be examined in more depth. Within this model, the initial relationship between the carer-patient is considered, along with carers' appraisal of the patient's illness (including perceived threat and control), coping strategies, and cognitive and affective responses.

4.6. Conclusions

Cognitive and behavioural avoidance strategies such as denial, withdrawal, emotional masking and rumination are common patterns of coping in carers of young people with FEP. Such strategies are related to carers' psychological distress, EE and increased carer appraisal of burden associated with care-giving in the first year after commencing treatment for FEP. Interventions facilitating the use of adaptive problem solving and positive re-appraisal will minimise carer burden and reduce carers' psychological distress. Indeed, there is a growing evidence-base for interventions for family members caring for individuals with psychosis (MacCarthy et al, 1989, Gleeson et al, 2010, and McCann et al, in press); however, more clinical trials are required to determine which interventions are most effective for carers ( Szmukler et al., 2003 ). Effective and brief interventions could be easily integrated to the multidisciplinary treatment models offered in SEI services. Such interventions may also improve the outcomes of patients who have had a first episode of psychosis.

Role of funding source

Australian Rotary Health Research Fund (Mental Health). Trial registration: http://www.ANZCTR.org.au/ACTRN12609000064202.aspx . The funding body had no involvement in the production of this paper.

Contributors

Prof Terence McCann was the principal investigator on the clinical trial. Other chief investigators included Prof Daniel Lubman and Prof John Gleeson. These investigators including Mr Kingsley Crisp were responsible for the production of the treatment manual. Prof Terence McCann and Prof Daniel Lubman managed the conduct of the trial. A/Prof Sue Cotton, conducted the statistical analyses and wrote the first draft of this manuscript. The other authors provided editorial comments on various versions of the manuscript.

Conflict of interest

In the past 3 years, Dan Lubman has received speaking honoraria from Astra Zeneca and Janssen-Cilag and has provided consultancy support to Lundbeck. No conflicts of interest are noted.

Acknowledgements

Our thanks to the carer participants, the case managers, and carer support programme for assistance with recruitment. Our appreciation to Flora McCann, Lisa Catania, Claudia Marck, Belinda Dimmock, and Dr Helen Baker for their contribution to data collection and Judith Johnston (nee McCann) for her contribution to the writing of the manual. The authors have declared that there are no conflicts of interest in relation to the conduct of this study.

References

  • Alvarez-Jimenez et al., 2010 M. Alvarez-Jimenez, J.F. Gleeson, S. Cotton, D. Wade, K. Crisp, M.B.H. Yap, P.D. McGorry. Differential predictors of critical comments and emotional over-involvement in first episode psychosis. Psychol. Med.. 2010;40(1):63-72 Crossref
  • Andrews and Slade, 2001 G. Andrews, T. Slade. Interpreting scores on the Kessler Psychological Distress scale (K10). Aust. N. Z. J. Public Health. 2001;25:494-497 Crossref
  • Barrowclough and Parle, 1997 C. Barrowclough, M. Parle. Appraisal. psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia. Br. J. Psychiatry. 1997;171:26-30 Crossref
  • Birchwood and Cochrane, 1990 M. Birchwood, R. Cochrane. Families coping with schizophrenia: coping styles, their origins and correlates. Psychol. Med.. 1990;20:857-865 Crossref
  • Carver et al., 1989 C.S. Carver, M.F. Sheier, J.K. Weintraub. Assessing coping strategies: a theoretically based approach. J. Pers. Soc. Psychol.. 1989;56:267-283 Crossref
  • Chadda et al., 2007 R.K. Chadda, T.B. Singh, K.K. Ganguly. Caregiver burden and coping. A prospective study of the relationship between burden and coping in carergivers of patients with schizophrenia and bipolar affective disorder. Soc. Psychiatry Psychiatr. Epidemiol.. 2007;42:923-930 Crossref
  • Fadden et al., 1987 G. Fadden, P.E. Bebbington, E. Kuipers. The burden of care: the impact of functional psychiatric illness on the patient's family. Br. J. Psychiatry. 1987;150:285-292 Crossref
  • Folkman and Lazarus, 1985 S. Folkman, R.S. Lazarus. If it changes it must be a process: a study of emotion and coping during three stages of a college examination. J. Pers. Soc. Psychol.. 1985;48(1):150-170 Crossref
  • Fortune et al., 2005 D.G. Fortune, J.V. Smith, K. Garvey. Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: an exploration using self-regulation theory. Br. J. Clin. Psychol.. 2005;44:319-331 Crossref
  • Gerson et al., 2011 R. Gerson, C. Wong, L. Davidson, D. Malaspina, T. McGlashan, C. Corcoran. Self-reported coping strategies in families of patients in early stages of psychotic disorder: an exploratory study. Early Interv. Psychiatry. 2011;5:76-80 Crossref
  • Gleeson et al., 2010 J.F.M. Gleeson, S.M. Cotton, M. Alvarez-Jimenez, D. Wade, K. Crisp, B. Newman, D. Spiliotacopoulos, P.D. McGorry. Family outcomes from an RCT of relapse prevention therapy in first episode psychosis. J. Clin. Psychiatry.. 2010;71:475-483 Crossref
  • Kuipers and Bebbington, 1988 E. Kuipers, P. Bebbington. Expressed emotion research in schizophrenia: theoretical and clinical implications. Psychol. Med.. 1988;18:893-909
  • Kuipers et al., 2010 E. Kuipers, J. Onwumere, P.E. Bebbington. Cognitive model of caregiving in psychosis. Br. J. Psychiatry. 2010;196:259-265 Crossref
  • MacCarthy and Brown, 1989 B. MacCarthy, R. Brown. Psychosocial factors in Parkinson's disease. Br. J. Clin. Psychol.. 1989;28:41-52 Crossref
  • MacCarthy et al., 1989 B. MacCarthy, E. Kuipers, J. Hurry, R. Harper, A. LeSage. Counselling the relatives of the long-term adult mentally ill I: evaluation of the impact of relatives and patients. Br. J. Psychiatry. 1989;154:768-775 Crossref
  • McCann et al., 2011a T.V. McCann, D.I. Lubman, E. Clark. Responding to stigma: first-time caregivers of young people with first-episode psychosis. Psychiatr. Serv.. 2011;62:548-550 Crossref
  • McCann et al., 2011b T.V. McCann, D.I. Lubman, E. Clarke. First-time primary caregivers' experience of caring for young adults with first episode psychosis. Schizophr. Bull.. 2011;37(2):381-388 Crossref
  • McCann et al., in press McCann, T.V., Lubman, D.I., Cotton, S.M., Murphy, B., Crisp, K., Catania, L., Marck, C., Gleeson, J.F.M., in press. A randomized controlled trial of bibliotherapy for carers of young people with first-episode psychosis. Schizophr. Bull. 5.
  • O'Brien et al., 2009 M.P. O'Brien, J.L. Zinberg, L. Ho, A. Rudd, A. Kopelowicz, M. Daley, C.E. Bearden, T.D. Cannon. Family problem solving interactions and 6-month symptomatic and functional outcomes in youth at ultra-high risk for psychosis and with recent onset psychotic symptoms: a longitudinal study. Schizophr. Res.. 2009;107:198-205 Crossref
  • Onwumere et al., 2011a J. Onwumere, P. Bebbington, E. Kuipers. Family interventions in early psychosis: specificity and effectiveness. Epidemiol. Psychiatr. Sci.. 2011;20:113-119 Crossref
  • Onwumere et al., 2011b J. Onwumere, E. Kuipers, P. Bebbington, G. Dunn, D. Freeman, D. Fowler, P. Garety. Coping styles in carers of people with recent and long-term psychosis. J. Nerv. Ment. Dis.. 2011;199:423-424 Crossref
  • Scazufca and Kuipers, 1999 M. Scazufca, E. Kuipers. Coping strategies in relatives of people with schizophrenia before and after psychiatric admission. Br. J. Psychiatry. 1999;174:154-158 Crossref
  • Szmukler et al., 1996 G.I. Szmukler, P. Burgess, H. Herman, A. Benson. Caring for relatives with serious mental illness: the development of Experience of Caregiving Inventory. Soc. Psychiatry Psychiatr. Epidemiol.. 1996;31(3–4):137-148 Crossref
  • Szmukler et al., 2003 G. Szmukler, E. Kuipers, J. Joyce, T. Harris, M. Leese, W. Maphosa, E. Staples. An exploratory randomised controlled trial of a support programme for carers of patients with psychosis. Soc. Psychiatry Psychiatr. Epidemiol.. 2003;38:411-418 Crossref
  • Tennakoon et al., 2000 L. Tennakoon, D. Fannon, V. Doku, S. O'Ceallaigh, W. Soni, M. Santamaria, E. Kuipers, T. Sharma. Experience of caregiving: relatives of people experiencing a first episode of psychosis. Br. J. Psychiatry. 2000;177:529-533 Crossref
  • Wiedemann et al., 2002 G. Wiedemann, O. Rayki, E. Feinstein, K. Hahlweg. The family questionnaire: development and validation of a new self-report scale for assessing expressed emotion. Psychiatry Res.. 2002;109(3):265-280

Footnotes

a Orygen Youth Health Research Centre, Locked Bag 10, Parkville Victoria 3052, Australia

b Centre for Youth Mental Health, The University of Melbourne, Victoria 3010, Australia

c Discipline of Mental Health Nursing, College of Health and Biomedicine, Victoria University, PO Box 14428, Victoria 8001, Australia

d School of Psychology, Australian Catholic University, Locked Bag 4115, Fitzroy MDC Victoria 3065, Australia

e Orygen Youth Health, Parkville, Locked Bag 10, Parkville Victoria 3052, Australia

f School of Psychology and Psychiatry, Building 17, Clayton Campus, Wellington Road, Monash University, VIC 3800, Australia

g Turning Point Alcohol and Drug Centre, Eastern Health and Monash University, 54-62 Gertrude Street, Fitzroy Victoria 3065, Australia

lowast Corresponding author at: Orygen Youth Health Research Centre and Centre for Youth Mental Health, University of Melbourne, Locked Bag 10 (35 Poplar Road), Parkville Victoria 3052, Australia. Tel.: + 61 3 9342 2859; fax: + 61 9342 2941.