Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study

Aim.  To explore first-time primary caregivers’ experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis.

Background.  Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians.

Design.  Qualitative interpretative phenomenological analysis.

Method.  A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data.

Results.  Two competing themes were identified in the data, highlighting caregivers’ contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs’ concerns and young people’s requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff.

Conclusion.  First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers’ commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally.

Relevance to clinical practice.  Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for clinical staff in family interventions and to familiarise them with legislation and mental health policies relating to carers.