Trajectory to a first episode of psychosis: a qualitative research study with families

Abstract

Aim: The trajectory in psychotic disorders which leads from a relatively normal premorbid state in young people to a first episode of psychosis is only partly understood. Qualitative research methods can be used to begin to elucidate the temporal unfolding of symptoms leading to a first episode of psychosis, and its impact on families.

Methods: We conducted open-ended interviews with family members of 13 patients with recent onset non-affective psychotic disorders, which focused on changes observed, effects on the family, explanatory models, help-seeking patterns and future expectations. Standard data analytic methods employed for qualitative research were used.

Results: Narratives by family members were remarkably similar. First, social withdrawal and mood symptoms developed in previously normal children; these changes were typically ascribed to drugs or stress, or to the 'storminess' of adolescence. Coping strategies by family members included prayer and reasoning/persuasion with the young person, and family initially sought help from friends and religious leaders. Entry into the mental health system was then catalysed by the emergence of overt symptoms, such as 'hearing voices', or violent or bizarre behaviour. Family members perceived inpatient hospitalization as traumatic or difficult, and had diminished expectations for the future.

Conclusions: Understanding families' explanatory models for symptoms and behavioural changes, and their related patterns of help-seeking, may be useful for understanding evolution of psychosis and for the design of early intervention programmes. Dissatisfaction with hospitalization supports the mandate to improve systems of care for recent-onset psychosis patients, including destigmatization and a focus on recovery.

Keywords: early intervention; families; prodrome; psychosis; qualitative research.