Consumer and carer perspectives in the development of a mental health research, treatment and teaching facility: A thematic analysis

Accessible summary

What is known on the subject?: Around the world, recovery has become a focus in mental health policy. The participation of people accessing mental health services (consumers) and carers of such individuals in decision-making related to services forms part of this recovery orientation and studies suggest positive outcomes following such participation. However, little is known about consumer and carer desires at the earliest stages of development of new services. 

What this paper adds to existing knowledge?: Consumers and carers desire changes to how mental health services are provided. Many factors affect consumer and carer experiences, including language use, physical design of spaces, accessibility, consideration of individual needs, practical help and how well care is continued from hospital to community settings. Carers may feel sidelined in treatment and be distressed as a result. They wish to be respected and involved in recovery. Consumers and carers wish for focus on broader health, with care taken to address physical health, psychological needs, social needs and treatment of the whole person rather than just an illness. 

What are the implications for practice?: Consumers and carers desire partnership with professionals in recovery. Tokenistic participation should be avoided. Flexibility in how services are provided and less formality may help engage consumers and carers. Specifically, professionals may help by linking consumers and carers to services that address practical needs. Professionals should communicate with carers to draw on their expertise about the individual accessing the mental health service and help carers understand how they can assist the individual's recovery. 

Abstract

Introduction: Recovery-oriented mental health policies recognize consumer and carer participation in service decision-making as essential, but little is known about the views of these individuals in the earliest stages of service development. 

Aim: This study sought consumer and carer perspectives addressing the establishment of a mental health research, treatment and teaching facility in their region. 

Methods: Two 2-hr focus groups were conducted, with separate groups held for mental health consumers (n = 9) and carers (n = 9), respectively. Discussions pertained to mental health literacy, gaps in current services, desires for an ideal facility (in terms of physical design and services offered) and what would help in recovery. 

Results: Inductive thematic analysis was used to generate three themes: care outside of consultations, carer involvement in recovery and holistic approaches to mental health care. Consumers desired a facility that could cater to individual needs. Carers felt excluded in recovery and unable to provide effective support. Both groups preferred holistic approaches to mental health, expressing ambivalence towards medication and hospitalization. 

Discussion: Consumers and carers have many needs that conventional practices may not meet. 

Implications for practice: They have clear desires for equal partnership in recovery and for transformation of conventional treatment methods.