Mental Health Service-users’ experiences of people-centred joined-up care in Aotearoa New Zealand: development of a new people-centred joined-up model and questionnaire

Abstract

Internationally and in New Zealand (NZ), mental health service-users (MHS-users) have been shown to experience inequities in health and wellbeing outcomes, including premature mortality, compared to the general population. Barriers to accessing quality care were identified as one driver of these inequities in the recent 2018 Report of the Government Inquiry into Mental Health and Addiction (He Ara Oranga). In NZ, Māori MHS-users experience inequities in outcomes compared to non-Māori MHS-users, and are likely to experience compounding barriers to receiving quality care. People-centred and joined-up (integrated) care (PCJUC) have been found to improve MHS-users’ outcomes and experiences of care.

The aim of this thesis was to develop a questionnaire to assess MHS-users’ perspectives and experiences of PCJUC within and between MHS, other health services (such as primary healthcare and specialist hospital services), and social/community services. This questionnaire was developed with extensive input from people with lived-experience of mental illness/distress, and be a useful and appropriate tool for Māori MHS-users.

Using existing integrated care and people-centred care frameworks and theories as foundations, interviews with 10 key informants, half of whom reported lived experience of mental illness/distress, informed the development of a new model of PCJUC – the first output of this thesis. The model expands upon the foundational framework and theories with concepts raised by study participants including: culturally responsive services, building capabilities, strengths-based approaches, therapeutic relationships, peer-support, and navigation. A scoping review of existing measures of integrated and/or people-centred care identified 74 papers describing 64 measures. Where possible, questions from these measures were mapped to the new PCJUC model and informed the development of the draft PCJUC questionnaire (PCJUC-Q) v1.0.

A focus group of current/recent MHS-users shared their own stories to contextualise the questionnaire, identified gaps/omissions in the questionnaire, and collaboratively generated solutions. The focus group feedback informed refinement of the questionnaire. PCJUC-Q v2.0 was then shared with focus group participants and key informants to check its face validity. Their feedback further refined the questionnaire, resulting in the final draft PCJUC-Q v3.0.

The new PCJUC model was built with extensive input from people with lived-experience, including Māori, and illustrates what PCJUC may look like for MHS-users in NZ. It is hoped that this model, closely informed by experiences of people with lived experience of mental illness/distress, will support improvements in policy and service design/delivery as called for by He Ara Oranga (2018).

Once psychometrically tested and validated, the draft PCJUC-Q v3.0 may provide a tool for measuring MHS-users’ experiences of PCJUC. This data could support services to identify gaps in the way services deliver PCJUC, as well as measure progress in delivering PCJUC over time. Ultimately, it is hoped that the draft PCJUC-Q will help inform targeted improvements in people-centredness and joined-up services, leading to more equitable health and wellbeing outcomes for MHS-users in NZ.