First-time primary caregivers' experience accessing first-episode psychosis services

Abstract

AIM: Easy access to first-episode psychosis (FEP) services is critical in reducing the duration of untreated illness. However, primary caregivers can encounter difficulties accessing services on behalf of young people with FEP. This qualitative study describes the lived experience of first time primary caregivers of young adults with FEP, with a focus on examining how they access specialist FEP services. METHODS: A qualitative study was undertaken using semi-structured, in-depth interviews with 20 caregivers in Melbourne. RESULTS: Most carers were women (85%, n = 17) and parents (85%, n = 17). Nearly all lived in the same households as the young people with FEP (90%, n = 18). The mean duration of their involvement with the FEP service was 14.5 months (standard deviation = 8.9). Three competing themes were identified in the data, reflecting caregivers' polarized experiences accessing FEP services. First, general practitioners were regarded as either a resourceful or an unresourceful means of access to FEP services. Second, caregivers often encountered service-focused and carer-focused barriers when initially accessing services. Third, a combination of acquired knowledge, experience with services and caregiver assertiveness enhanced access on subsequent occasions. CONCLUSION: This study highlights the important contribution and experience of first-time primary caregivers and the difficulties they face accessing services. The findings suggest access should be influenced more by clinical need and less by caregivers'perseverance. The findings also underline the importance of providing clinical training that acknowledges the needs and contributions of caregivers, as well as interventions that meet the unique challenges faced by first-time caregivers accessing services after the onset of FEP.

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