title: A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients.
abstract: Our 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 bulbar onset. CNA-T and CNA-I were significantly reduced at T1 (both, p < 0.01). Caregivers' parental relationship to patient (filial) and working status influenced caregivers' needs. After a longer follow-up (T2), CNA-E significantly decreased vs. T0 score (p < 0.02). In conclusion, over time, caregivers of advanced ALS patients show persisting high strain while needs decline, although the level still remains high. Further studies are needed to propose the most appropriate support.
authors.affiliation: Servizio di Psicologia.
authors.forename: Gisella
authors.initials: G
authors.lastname: Bruletti
authors.forename: Laura
authors.initials: L
authors.lastname: Comini
authors.forename: Simonetta
authors.initials: S
authors.lastname: Scalvini
authors.forename: Roberta
authors.initials: R
authors.lastname: Morini
authors.forename: Alberto
authors.initials: A
authors.lastname: Luisa
authors.forename: Mara
authors.initials: M
authors.lastname: Paneroni
authors.forename: Michele
authors.initials: M
authors.lastname: Vitacca
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000534:rehabilitation*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D013997:Time Factors
keywords: Strain; caregiving; needs; psychological; questionnaires