Preferred intensity and implementation of patient and family participation in an outpatient psychiatric service and an outpatient type 2 diabetes service

Abstract

Introduction : Patient and family participation is when the views and experiences of patients and family are sought and taken into account in healthcare changes. Participation leads to improvements for health systems and services, patients and clinicians. However, the best way to involve patients and family members has not been identified. This study aims to establish preferences for the level of intensity and implementation of participation in healthcare design and delivery. Methods : Separate three-round Delphi Technique Experiments (DTEs) were conducted with a panel of 31 participants from an outpatient psychiatry service and a panel of 28 participants from an outpatient type 2 diabetes service, both in Ireland. Each panel included patients, family members and clinicians. Consensus was achieved when at least 65% of the panel were in agreement and there was less than a 15% change in opinions between rounds. Results : Consensus was achieved in 60/65 questions in the psychiatry DTE and 60/64 questions in the diabetes DTE. Patient participation at all times was supported by the psychiatry panel (73% n=22/30) while the diabetes panel agreed on patient participation as problems arise (83% n=24/29). Family involvement in discussions was supported by 66% (n=23/35) of the psychiatry panel and 72% (n=18/25) of the diabetes panel. Patients ‘voting’ on changes was supported by 87% (n=27/31) of the psychiatry panel and 72% (n=21/29) of the diabetes panel. Both panels agreed on representation through patient and family representatives with factors such as ability to dedicate time considered during selection and personal experiences, discussions with other patients and family members and pre-identified priorities taken into account when providing input. Strong consensus was reached on the need for training to be provided to all stakeholders, including clinical. Discussions : This is the first time patients, family members and clinicians are included together in the identification of the intensity and implementation of participation. The inclusion of these groups is essential for the development of long-lasting sustainable participation. This study is the first to focus on family participation establishing the preferred level of intensity and method of family participation. Given the role of family members in care and management of chronic illnesses identification of their role within services is key. Conclusions : Patients, family members and clinicians agreed on patients having a vote in changes and family being involved in discussions. Training needs to be provided to all stakeholder groups. Lessons learned : Consensus between key stakeholder groups in participation can be achieved. There is support for participation at all times in psychiatry but only as problems arise in diabetes. Greater intensity patient participation is supported with preference for patients having a vote in changes and family only being involved in discussions about changes. Limitations : Higher levels of education have been associated with support for participation. Both panels in this research are highly educated due to the inclusion of clinicians. Suggestions for future research : Develop and test an intervention to encourage participation based on the preferences indicated in this research. Conduct DTEs in a broader range of services to establish if similar patterns emerge.