[Patient participation in the assessment of alternatives to restraint and seclusion]

To explore the perceptions of members of a working group of caregivers, health technology assessment (HTA) units members, healthcare facilities managers and patients representatives regarding the participation of the latter in the assessment of alternatives to restraint and seclusion among adults in short-term psychiatric wards and in long-term care facilities for the elderly, in Quebec.

A descriptive design was used for this research based on fifteen semi-structured interviews with caregivers, healthcare managers, patient representatives and HTA unit members. The direct observation of two meetings of the working group and informal discussions with participants at these meetings was also performed. Data analysis was based on a framework developed to assess patients' involvement in HTA.

Information resources and human resources were mobilized to support the participation of patients' representatives. Nevertheless, this participation was uneven between patients' representatives due to their personal characteristics, the understanding of their role in this working group and expectations of the committee. The presence of patient representatives led caregivers and managers to focus the assessment on patients' concerns and to adjust the language used during the meeting. Moreover, organizational and political context has been identified as a facilitator for this participation.

Involving patients' representatives in HTA activities is thus possible. However, some resources must be mobilized to equip patients' representatives who participate in these activities and personal characteristics should be considered when selecting them to favour their involvement