Table 1 Content and purposes of the pragmatic intervention by a social worker in the intervention group of the nested randomized trial for caregivers

Format of the intervention:

For each caregiver randomized to the intervention arm of the trial, a social worker will conduct an individual interview with the caregiver

Purposes of the interview:

To simply listen to the caregiver and allow them to express their complaints (and to be attentive to unspoken complaints)

To evaluate the level of difficulty experienced by the caregiver in their daily routine, being attentive to their personal situation

To respect and respond to any needs and/or requests expressed by the caregiver, and provide active support; guarantee confidentiality of the conversations and ensure that the caregiver participates willingly, without intruding in their life

To provide any resources that are lacking in the caregiver-patient relationship; provide information about available solutions for respite care, and other solutions specific to each case (accommodation, health care pathway, logistic/material support for the caregiver/patient)

To help the caregiver to more quickly apprehend and come to terms with their commitment of being a caregiver

To be attentive to any alert signals and prevent deterioration towards crisis situations (burn-out, abuse); to alert third parties if the caregiver is found to be in a critical situation

Through their interactions with the caregiver, the social worker will provide accompaniment and support, offering pertinent information and orientation towards appropriate structures of care depending on the situation the caregiver describes. The intervention leaves it to the discretion of the social worker to decide what is the most appropriate way to operate and the most appropriate solution to propose in practice for each caregiver

The intervention also aims to determine whether the needs expressed by the caregivers vary according to the patient’s disease, or according to the patient’s age, sex or place of residence.

After the intervention, the social worker will complete a standardized Data Transmission Sheet, with the Linear Analogue Scale Assessment quality of life (LASA) questionnaire (about the caregiver but completed by the social worker), to be forwarded to the study coordinator. They will receive receipt of their submission once the forms have been submitted