JMIR Publications

ABSTRACT

Background:

Increasingly, people are living with multi-morbidity and long-term conditions or permanent impairments which contribute substantially to health loss and additional health inequity. Critical to managing this health crisis is appropriate support provided by health and social services. International research has substantially informed supported self-management knowledge, and this has led to its implementation in Aotearoa New Zealand (NZ). Meagre attention has been given to how NZ health care organizations can appropriately support people self-manage their lifelong conditions within their own life contexts and cultures. Currently in NZ, those experiencing the greatest health inequities are Māori and Pacific peoples, Tāngata Whaikaha Māori [Māori with lived experience of disability] and people with learning (intellectual) disability who live with long-term health conditions/permanent impairments. This research aims to challenge and reframe supported self-management in NZ to enable our underserved populations and their whānau [families] to receive appropriate support to live well.

Objective:

We aim to reconceptualize supported self-management in NZ as a holistic approach to the provision of support and care within the complexities of the lived human and whānau experience. Three objectives will be considered across three key populations of people with long-term conditions/permanent impairments: (a) Māori, (b) Pacific Peoples, and (c) those with learning disability to: (1) Understand our community partners’ and their communities’ needs and aspirations for living well and how best to support people living with long-term conditions. (2) Develop innovative models of support by working alongside communities to enable supported self-management within their own context. (3) Implement models and evaluate outcomes.

Methods:

Underpinned by Whānau Tuatahi [Māori] and Fonua [Tongan] research models and the Transformative Paradigm, a participatory case study approach, based on the social construction of reality will be employed. Three case studies, one for each population group, will apply the same program objectives. Objectives 1 and 2 will be addressed with qualitative methodologies underpinned by relevant participatory designs. Objective 3 will use appropriate implementation frameworks.

Results:

Funded in October 2023, we have completed two years of this five-year program grant. These first two years were focused on relationship building, ethical applications, research capability and capacity building. Substantial, progressive consultation with the respective communities of each case study was undertaken

Conclusions:

New knowledge generated across our program has the potential to inform NZ policy and practice about service delivery acceptable to the people to whom it matters (particularly Māori, Pacific Peoples, and people with a learning disability) and places emphasis on wellbeing promotion. This approach focuses on the inherent strengths and abilities of people, rather than the deficits or problems, acknowledging the wealth of expertise and experience people living with long-term conditions/permanent impairments bring, and builds relationships and partnerships between people and health care partners. Clinical Trial: Not applicable