Student: Amy Chisholm
Supervisors: Dr Carolyn Doughty, Dr Jane Elmslie, Associate Professor Richard Porter [Depts Public Health & General Practice and Psychological Medicine]
Sponsor: Canterbury Medical Research Foundation
Bipolar disorder is a mood disorder included in the ten leading causes of disability worldwide. The main treatment for bipolar disorder is medication. However, when used in addition to medication, psychological and social interventions also help people with bipolar disorder. These interventions include educating people about all aspects of the disorder and its management, known as ‘psychoeducation’, and mutual support and learning from others affected by bipolar disorder, known as ‘peer support’.
Bipolar Support Canterbury is an organisation that provides support to people affected by bipolar disorder, empowering them through peer support and education. The question is, how do you evaluate the performance of such an organisation? Research indicates that the priorities of professionals in providing a quality mental health service differ from the priorities of consumers. In particular, professionals appear inclined to evaluate the effectiveness of their service based on symptom reduction, while consumers are inclined to evaluate the effectiveness of a service based on how it impacts upon their ability to live well while sometimes still affected by their illness. As such, it is important when evaluating a mental health organisation such as Bipolar Support Canterbury, that the priorities of the service users are considered. The aim of the current research is to determine both what consumers would like and what they expect from Bipolar Support Canterbury, and then to develop a consumer-based evaluation questionnaire for Bipolar Support Canterbury.
In order to determine the views of Bipolar Support Canterbury consumers, 31 service users from a range of ethnic groups voluntarily participated in interviews, either individually or in a small focus group. The interview questions concentrated on the consumer’s experience of bipolar disorder, understanding the different strategies they have used to deal with their bipolar disorder, and exploring what the specific role and approach of Bipolar Support Canterbury should be.
Responses to interview questions were combined and organized into themes. This resulted in a list of services consumers noted as being important that Bipolar Support Canterbury provide, a list of skills required to facilitate effective service provision, and a list of values expected of a community mental health organization such as Bipolar Support Canterbury. Firstly, participants saw the key roles for Bipolar Support Canterbury as involving provision of information to both individuals and the general public, the provision of a support person to listen to them and assist with personal change, the organization of peer support groups, the provision of a welcoming environment, and advocacy when required. Secondly, the main skills participants required of Bipolar Support Canterbury staff were a knowledge of bipolar disorder, its’ medications, and mental illness generally, along with a direct experience with bipolar disorder. Communication skills were said to be important, along with being encouraging, caring, and friendly. Finally, the most important values expected of Bipolar Support Canterbury staff by participants were to be accepting of others, and not look down on them, that they appreciate the person as a whole, and that they appreciate individual differences between people, including both cultural differences and spiritual differences.
What are the implications of this research? Firstly, according to a range of Bipolar Support Canterbury users, both psychoeducation and support are services expected of Bipolar Support Canterbury. This indicates that these effective treatment strategies may be offered both by clinicians and community support organizations. Secondly, the development during this research of a consumer-informed questionnaire will allow Bipolar Support Canterbury to consider the services they provide in a manner meaningful to their users, providing feedback on the important areas of their service and eventually facilitating relevant changes to the service. Finally, the importance of using consumers’ views in providing and evaluating services is increasingly recognized and this research shows how consumers can play an active part in improving mental health services. The questionnaire and the process by which it was developed may help other community-based mental health organizations evaluate their own organizations in a consumer friendly way.