Do carers of adolescents at first episode psychosis have distinctive psychological needs? A pilot exploration.

BACKGROUND: Carers of patients experiencing first episode psychosis (FEP) are at an increased risk of mental and physical health problems themselves. However, little is known about how the psychological needs of carers may differ between those caring for an adolescent versus an adult who has FEP. AIMS: This pilot study aimed to explore any differences in the psychological needs of carers caring for adolescents versus adults with FEP. METHODS: We surveyed 254 carers of 198 FEP patients (34 carers of adolescents of 24 FEP adolescent patients). Carers completed self-report measures of anxiety, depression, burnout, subjective burden, coping, and key illness beliefs. The sample was divided according to whether the patient was under (adolescent) or over (adult) age 18, and analysed using mixed model logistic regressions. RESULTS: Compared to the carers of adult patients, carers of adolescents were more than twice as likely (12% vs. 30%) to experience overall burnout syndrome (all three domains), and to develop it much quicker (19.4 vs. 10.1 months). They were also more likely to adopt behavioural disengagement avoidance as a form of coping. However, there was no difference between carers in terms of anxiety, depression, beliefs and subjective burden. For carers of adolescents, burnout was independently predicted by: a negative belief about the consequences of psychosis for the adolescent patient and an incoherent understanding of the patient's mental health. CONCLUSIONS: If our findings can be replicated in a larger sample, then Rapid-Onset-Burnout-Syndrome (ROBS) is a particular problem in carers of adolescents at FEP, suggesting a need for routine screening and possible prophylactic intervention. Carers of adolescent's use of behavioural escape coping maybe also require early intervention. Theoretically, consideration could be given to the development of an adolescent sub-branch to the cognitive model of caregiving.

Carer subjective burden after first-episode psychosis: Types and predictors. A multilevel statistical approach.

BACKGROUND: Carer burden at first-episode psychosis is common and adds to the multiple other psychiatric and psychological problems that beset new carers; yet, knowledge of the factors that predict carer burden is limited. AIM: This study sought to investigate the types and predictors of carer burden at first-episode psychosis in the largest, most ethnically diverse and comprehensively characterised sample to date. METHOD: This study involved a cross-sectional survey of carers of people with first-episode psychosis presenting to Harrow and Hillingdon Early Intervention in Psychosis service between 2011 and 2017. Carers completed self-report measures assessing their illness beliefs, coping styles and caregiving experiences (i.e. burden). Thirty carer and patient sociodemographic and clinical factors were also collected. Mixed effects linear regression modelling was conducted to account for clustering of carers by patient, with carer burden (and its 8 subtypes) investigated as dependent variables. RESULTS: The sample included data on 254 carers (aged 18-74 years) and 198 patients (aged 14-36 years). Regression modelling identified 35 significant predictors of carer burden and its subtypes at first-episode psychosis. Higher total burden was independently predicted by perceiving greater negative consequences of the illness for the patient (B = .014, p < .001, 95% CI: [.010-.018]) and the carer (B = .008, p = .002, 95% CI: [.003-.013]), and engaging in avoidant-focussed coping (B = .010, p = .006, 95% CI: [.003-.016]). Lower burden was independently predicted by patients being in a relationship (B = -.075, p = .047, 95% CI: [-.149 to -.001]). Predictors of the eight burden subtypes (difficult behaviours, negative symptoms, stigma, problems with services, effects on family, dependency, loss and need to backup) are also included in the article. CONCLUSION: Findings can be used to inform the identification of carers 'at-risk' of experiencing burden and highlight potential targets for theraputic intervention to lower carer buden.

First episode psychosis: A comparison of caregiving appraisals in parents caring for the same child.

BACKGROUND: The first onset of psychosis can be a traumatic event for diagnosed individuals but can also impact negatively on their families. Little is known about how parents of the same child make sense of the illness. In mothers and fathers caring for the same child with early psychosis, the current study assessed their similarities and differences in key areas of their caregiving role. METHODS: Using a cross-sectional design, parental pairs caring for the same child treated within an early intervention in psychosis service, completed self-report measures on their caregiving experiences, illness beliefs, coping styles and affect. RESULTS: Data from 44 mothers and fathers were analysed. Analyses confirmed that parents reported similar levels of emotional dysfunction and conceptualized the illness in broadly similar ways with regard to what they understood the illness to be, their emotional reactions to the illness, perceived illness consequences and beliefs about treatment. Significant differences were identified in their beliefs about the timeline of the illness and reported approaches to coping. CONCLUSIONS: With exception of beliefs about illness timeline and an expressed preference for use of emotion-based coping, parent caregivers of the same child in early psychosis services are likely to report similar illness beliefs and caregiving reactions. Efforts to ensure staff awareness of the potential areas of divergence in parental caregiving appraisals and exploring the implications of the divergence for the caregiving relationship and patient outcomes are indicated.

Understanding the experience of "burnout" in first-episode psychosis carers.

BACKGROUND: The first onset of psychosis can exert a significant negative impact on the functioning and positive wellbeing of family carers. Carer reports of "burnout" have recently been recorded in early psychosis carers, though the literature is scarce detailing our understanding of how burnout relates to the primary experience of caregiving. The current study investigated reports of burnout and its relationship with beliefs about caregiving and wellbeing in a large group of early psychosis carers who were routinely assessed within an early intervention team. METHODS AND MATERIALS: Using a cross-sectional design, 169 early psychosis carers completed the Maslach Burnout Inventory alongside measures of caregiving experiences, affect and wellbeing. RESULTS: The mean illness length for patients with psychosis was 18 months. Their mean age was 24.4 years and most was male (65%). The majority of carer participants were parental caregivers and living with their relative with psychosis. Across the three key burnout dimensions, 58% of the sample reported high levels of emotional exhaustion; 31% endorsed high levels of depersonalization; and 43% reported low levels personal accomplishment. The most severe level of burnout, reflecting elevated rates across all three dimensions, was observed in 16% of the sample. Carer burnout was positively associated with negative caregiving experiences (i.e. burden), poor affect, and reduced levels of positive wellbeing and perception of being in good health. CONCLUSIONS: Reports by early psychosis carers of exhaustion, feeling inadequate and expressing negativity towards the relative they care for is not uncommon and are closely associated with their overall negative appraisals of caregiving. The results underscore the importance of developing targeted interventions during the early phase, which are designed to reduce the development and entrenchment of burnout responses in carers, but to also mitigate its negative sequelae.

Modifying illness beliefs in recent onset psychosis carers: Evaluating the impact of a cognitively focused brief group intervention in a routine service.

AIMS: At first-episode psychosis (FEP), many patients will be routed within familial networks and supported by informal carers who are predominately close family members such as parents. Carer burden, distress and poorer coping styles are associated with different illness beliefs. The current study sought to examine the impact and acceptability of a 3 session, cognitively informed, group intervention targeting illness beliefs previously linked to distress and poorer caregiving experiences in FEP carers. METHODS: Carers attending a routine FEP service were invited to attend the group intervention and completed a measure of illness beliefs at baseline and post intervention. RESULTS: Data on 68 carers with complete datasets are presented. Carers were predominately females (64.2%). Group attendance was linked to positive improvements in carer baseline beliefs about the negative consequences of the illness for the patient and themselves, attributions of blame about the illness to the patient and themselves and their overall understanding about the illness. Significant improvements in their understanding of the illness timeline and course, and confidence in dealing with difficulties were also identified. CONCLUSIONS: A cognitively informed group approach to targeting the less adaptive illness beliefs reported by FEP carers may offer an effective and acceptable pathway to facilitate their understanding of the illness and adjustment. Further studies using controlled designs are required.

Burnout in early course psychosis caregivers: the role of illness beliefs and coping styles.

AIMS: In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. METHODS: Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. RESULTS: Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. CONCLUSIONS: The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.