A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients
2015
AbstractOur objective was to explore strain and needs in caregivers of advanced ALS patients and correlate this burden with patient's clinical condition and caregiver's sociodemographic status.Fifty-eight caregivers completed the Family Strain Questionnaire-short form (FSQ-SF) and Caregiver Needs Assessment (CNA) during patients’ hospitalization (T0); 39 caregivers were reassessed at 6–12 months (T1) and 13 caregivers at 18–24 months (T2) follow-up. FSQ-SF and CNA total scores (CNA-T), including the CNA subscores ‘Emotional/Social Support Needs’ (CNA-E) and ‘Information/Communication Needs’ (CNA-I), were compared to patients’ clinical condition (measured by ALSFRS-R and FVC %) and caregivers’ sociodemographic status. Results showed that high strain level was found in 80% of caregivers and persisted over time. At T0, CNA-T was moderate and was not correlated to site of ALS onset, patients’ clinical variables, or caregiver's sociodemographic characteristics; CNA-I subscore was significantly correlated to bu...
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