Carers' experiences of seeking help for relatives with first-episode psychosis: a systematic review of qualitative evidence

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 though often delays 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 psychotic illness. Minimising 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 synthesise the best available evidence on the lived experience of carers of a relative with a first-episode psychosis and in particular their experience preceding and of seeking help. Inclusion criteria Types of participants Carers of a relative presenting with a first-episode psychosis. Carers could be a parent, sibling, spouse or other relative of any age. Phenomena of interest Carers’ experience of a relative with a 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 in any country. 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 Search strategy Published and unpublished studies in English from January 1990 to August 2012 were identified by searching various electronic databases. Methodological quality Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised 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 standardised data extraction tool from JBI-QARI. This included 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 categorised on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis to produce a set of synthesised findings. Results Twenty-two studies were identified following appraisal that considered carers’ experiences of help-seeking for a relative with a first-episode psychosis. Five synthesised findings were derived from 16 categories and 213 findings. Delays often began 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 negative impact on carers of individuals with a psychotic illness was reported during the early stages of illness development, recognition, management and help-seeking, though the impact for each family member may differ. Conclusions Delays in accessing appropriate treatment arise at the illness recognition, help-seeking and service response stages. These areas were found to be interrelated. There was significant impact on carers throughout each of these stages.