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BACKGROUND: A subset of individuals with autism spectrum disorder (ASD) resemble descriptions of extreme/'pathological' demand avoidance, displaying obsessive avoidance of everyday demands and requests, strategic or 'socially manipulative' behaviour and sudden changes in mood. Investigating challenging presentations using dimensional description may prove preferable to identifying subgroups. However, there remains an imperative to explore which behavioural traits appear most problematic to inform quantitative investigation. This study provides an in-depth exploration of parent perspectives on maladaptive behaviour in children reported to have an autism spectrum diagnosis and features of extreme/'pathological' demand avoidance. METHOD: Parents completed a tailored semistructured interview about their child's behaviour, focusing on difficulties relevant to descriptions of extreme/'pathological' demand avoidance. The 26 interviews rated as scoring above threshold for 'substantial' features of extreme/'pathological' demand avoidance on relevant indicators were analysed qualitatively using a general inductive approach. RESULTS: New themes that emerged from these data included attempts by the child to control situations and others' activities. Avoidance behaviours in this sample could be described as 'strategic' rather than 'manipulative'. A range of factors, including a negative emotional response to demands, but also phobias, novelty, and uncertainty, were perceived to play a role in triggering extreme behaviour. CONCLUSIONS: These descriptions highlight the importance of systematically measuring noncompliance, attempts to control situations and others' activities, and extreme mood variability in individuals with ASD. These dimensions represent important targets for intervention, given their considerable impact on daily life.
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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.
Asunto(s)
Cuidadores , Trastornos Psicóticos , Adaptación Psicológica , Adolescente , Adulto , Agotamiento Psicológico , Cuidadores/psicología , Humanos , Proyectos Piloto , Trastornos Psicóticos/psicologíaRESUMEN
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.
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Cuidadores , Trastornos Psicóticos , Adaptación Psicológica , Carga del Cuidador , Estudios Transversales , HumanosRESUMEN
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.