Intervention Description
DISEASE
Caregivers were randomly assigned (1:1 ratio) to receive an information booklet and intervention from a social worker in the supportive intervention group (SIG) or to receive exclusively an information booklet in the control group (CG). Randomization was done by the data manager with an interactive web response system, using a minimization technique with stratification according to center, age (80 years or older versus below 80 years), gender, and stage (severity of the disease). Investigators and caregivers were not masked to group allocation.The theoretical framework justifying social worker intervention is to prevent caregiver QoL deterioration and to better support their involvement and communication, thereby contributing to preserving the quality of care provided to the patient. Social worker intervention used the Linear Analogue Scale Assessment (LASA) questionnaire and semi-directive interviews to support the emergence of caregiver needs and specifically address their needs through counselling regarding home services, medical home care, community services (support group), proposing services to promote safety and assist in daily needs (meal delivery, medical alert service), counselling from a psychologist, admission of caregivers for respite care, and encouraging caregivers to take care of themselves and regularly attend consultations with their physician. Interventions from social workers were scheduled at 6, 12, 18, and 24 months (M6, M12, M18, and M24) from inclusion and consisted of a 1 hour visit at the caregiver’s home with the intention of evaluating the level of difficulties experienced by the caregiver using the LASA questionnaire [Social worker intervention, based on the linear analogue self-assessment questionnaire and semi-structured interview performed at caregiver home (Informal Carers of Elderly study, France, 2015–2019).