Carersʼ experiences of seeking help for relatives with first-episode psychosis: a systematic review of qualitative evidence
Bibliographic record
Abstract
Background Individuals with a first-episode psychosis often have a prolonged and complicated path to accessing appropriate treatment. Research shows carers frequently initiate treatment although delays often remain even after problems have been detected. Qualitative studies have been conducted with the view to explore carers' experiences and inform the exploration of factors contributing to a long duration of untreated illness. Minimizing the impact of psychosis for individuals and improving outcomes remain a priority in clinical practice guidelines in many countries. Understanding and improving pathways to care is crucial to this goal. Objectives To synthesize the best available evidence on the lived experience of carers of a relative with first-episode psychosis and in particular their experience preceding and of seeking help. Inclusion criteria Types of participants Carers of a relative presenting with first-episode psychosis. Phenomena of interest Carers' experience of a relative with first-episode psychosis, and in particular, their experience preceding and of seeking help from both informal (family and friends) and formal (services) sources. Context Research conducted in any mental health care setting. Types of studies This review considered a wide range of qualitative studies including but not limited to designs such as phenomenology, grounded theory, ethnography and action research. Search strategy Published and unpublished studies in English from January 1990 to August 2012 were identified by searching various electronic databases. Reference lists of all papers identified through this process were then searched for additional studies. Methodological quality Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Data collection Data was extracted from identified papers using the standardized data extraction tool from JBI-QARI. The data extracted includes specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review objectives. Data synthesis Research findings were pooled using JBI-QARI. Study findings were rated according to their quality, and categorized on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis to produce a set of synthesized findings. Results Twenty-two studies were identified following appraisal that considered carers' experiences of help-seeking for a relative with first-episode psychosis. Five synthesized findings were derived from 16 categories and 213 findings. Delays often begin at the stage of illness recognition. The main barriers to seeking help were fear of stigma and reluctance of the ill relative to participate in the process. A crisis and overt psychotic symptoms were the main promoters of active help-seeking and facilitators to accessing services. Service response was often viewed as a barrier to service access. A significant impact on carers of individuals with a psychotic illness was reported during the early stages of illness development, recognition, management and help-seeking. The impact for each family member may differ. Conclusions Delays in accessing appropriate treatment arise at the stages of illness recognition, help-seeking and service response. These areas were found to be interrelated. There was significant impact on carers throughout each of these stages. Various recommendations, particularly regarding clinical practice and education, are made based on these findings.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.013 | 0.003 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.008 | 0.001 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".