Impact of psychosis on Portuguese caregivers: a cross-cultural exploration of burden, distress, positive aspects and clinical-functional correlates

Further cross-cultural comparisons are needed on caregiving consequences of chronic psychotic disorders. The EPSILON study
(European Psychiatric Services: Inputs Linked to Outcome Domains and Needs) involved five European countries, but not Portugal.
We aimed to analyse the impact of severe mental illness in a Portuguese sample and to provide support to comparisons with
some of the EPSILON results, focusing on the north-European Dutch centre.

We studied 108 caregiver-patient dyads by a consecutive sampling of people with schizophrenia-spectrum disorders in psychiatric
outpatient services. Relatives’ assessments included the Involvement Evaluation Questionnaire, European version (IEQ), the
12-item General Health Questionnaire (GHQ-12); the loss, stigma and positive aspects’ subscales of the Experience of Caregiving
Inventory, and the Social Network and Family Coping Questionnaires. Patients were assessed regarding symptoms, disability
and global functioning.

Caregiving rewards and negative consequences co-existed. On the IEQ, 49.1 % reported negative consequences and rank order
of domain scores was worrying > urging > tension > supervision. More than one-third of caregivers were psychologically distressed according to GHQ screenings. Involvement Evaluation Questionnaire
scores were correlated with caregivers’ distress, stigma, loss, patient’s involvement and other ways of coping, and patients’
variables. Some of these failed to be included in a regression model.

Many of these Portuguese caregivers were at risk regarding burden and psychological distress. In comparison with other European
samples, caregiving arrangements and assessments were typical of Mediterranean countries, as Italy or Spain. All IEQ scores
were significantly higher than those in the Netherlands. On account of small numbers, caution is needed in the interpretation
of associations.