Psychosis is the most ineffable experience of mental disorder. We provide here the first co‐written bottom‐up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically‐informed perspectives. First‐person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud‐based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self‐referentiality and permeated self‐world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re‐establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.
Background In an ageing world facing an epidemic of chronic diseases, there is great interest in the burden of multimorbidity on individuals and caregivers, yet no studies have examined the longitudinal association between multimorbidity and care dependence in low and middle income countries. Mental and cognitive disorders are associated with dependence but little is known about their role in the pathway to dependence in the context of multimorbidity. This study aims to determine (1) the association of multimorbidity with the onset of care dependence in older adults, accounting for mortality and controlling for sociodemographic factors, and (2) the independent effects of physical multimorbidity, mental and cognitive disorders. Methods A population-based cohort study of people aged 65 years and older in six countries in Latin America, and China. Data on chronic conditions and sociodemographic factors were collected at baseline. Multimorbidity was ascertained as a count of up to 15 mental, cognitive and physical health conditions. Dependence was ascertained through informant interviews at baseline and follow-up. We used competing risk regression to assess the association between multimorbidity and the onset of care dependence, acknowledging the possibility of dependence-free death. We also assessed the independent effects of physical multimorbidity and depression, anxiety and dementia individually. Results 12,965 participants, with no needs for care at baseline, were followed up for a median of 3.0–4.9 years. Each unit increase in multimorbidity count increased the cumulative risk of dependence by 20% in the fully adjusted model. Age was the only variable to confound this relationship. Physical multimorbidity was associated with only a modest increased risk of care dependence. Dementia, depression and anxiety were independently associated with incident care dependence at every level of physical multimorbidity, and depression and anxiety attenuated the effect of physical multimorbidity. Conclusion Multimorbidity consistently predicts care dependence with little variation between countries. Physical multimorbidity imparts a lower risk than multimorbidity with mental and cognitive disorders included. Mental and cognitive disorders independently increase the risk of care dependence. Comprehensive and holistic assessment of disorders of body, brain and mind can help to identify older people at high risk of care dependence.
Background and purpose Functional neurological disorder (FND) is common, and symptoms can be severe. There have been no international large‐scale studies of patient experiences of FND. Methods A patient questionnaire was created to assess FND patient characteristics, symptom comorbidities and illness perceptions. Respondents were recruited internationally through an open access questionnaire via social media and patient groups over a month‐long period. Results In total, 1048 respondents from 16 countries participated. Mean age was 42 years (86% female). Median FND symptom duration was 5 years, and median time from first symptom to diagnosis was 2 years. Mean number of current symptoms (core FND and associated) was 9.9. Many respondents had associated symptoms, for example fatigue (93%), memory difficulties (80%) and headache (70%). Self‐reported psychiatric comorbidities were relatively common (depression, 43%; anxiety, 51%; panic, 20%; and post‐traumatic stress disorder, 22%). Most respondents reported that FND had multiple causes, including physical and psychological. Conclusions This large survey adds further evidence that people with FND typically have high levels of multiple symptom comorbidity with resultant distress. It also supports the notion that associated physical symptoms are of particular clinical significance in FND patients. Dualistic ideas of FND were not supported by respondents, who generally preferred to conceptualize the disorder as one at the interface of mind and brain. The need for a broad approach to this poorly served patient group is highlighted. Potential selection and response biases due to distribution of the survey online, mostly via FND patient groups, are a key limitation.
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