Patient and family participation in healthcare design and delivery in a psychiatry and a type 2 diabetes service

Abstract

Background: There is no consensus on the best way to include patients and family in healthcare design and delivery. This PhD aimed to develop, implement and test the feasibility of an intervention to encourage patient and family participation in an adult outpatient psychiatry service and an adult outpatient type 2 diabetes service.

Methods: A mixed methods approach was adopted across five studies. Interviews, focus groups, questionnaires and Delphi Technique Experiments (DTE) were employed. Participants included patients, family members, clinicians and policy leaders. This was guided by the theoretical framework of Arnstein?s Ladder of Participation and the CLEAR Framework.

Results: Patient and family participation at the service level is restricted to the provision of information. Typically no involvement in discussions or the decision-making process is reported. However, participants favour greater patient participation (537/669; 80.3%) and family participation (374/676; 55.3%) at the service level. Interventions to encourage greater participation need to; include patients, family members and clinicians in development, link with wider patient and family populations, provide training and support and consider process and structure. The psychiatry pilot intervention was not implemented. This was due to a decision for clinicians to review representative attendance at management meetings after 3 months, linked with fears and anxiety, and a lack of structure in meetings. The diabetes pilot intervention of representative and clinician meetings supported by a forum was feasible with the support of the research team. This led to increases in the intensity of participation, changes in the service and improved communication.

Conclusion: This is the first time the intensity and support for greater participation has been identified at the service level in Ireland. It is also the first time consensus has been obtained between patients, family members and clinicians on what participation should look like using a DTE methodology. Services should identify intensity and preferences of participation and provide opportunities for participation. This requires policy with clearly defined goals and objectives relating to participation to be enacted and to include supports for implementation. Going forward there is a necessity for research to focus on outcomes, expand to a broader variety of services and continue work on family member and service level participation.