People living with neurological conditions have needs that require an integrated care approach. Existing models of integrated care have often emphasized system structures but neglected the micro-level interactions that matter most to people.
To develop a micro-level model for integrated care that represents the care components most valued by people affected by Huntington's disease (HD).
A mixed methods study with a co-designed approach was delivered through three phases. This paper reports on the latest two, where interviews and workshops were conducted with people with lived experience of HD and professionals, from January to October 2024. Patient and public contributors were involved from project design to data interpretation.
Three themes were identified that position integrated care from the perspective of those affected by HD, representing these as the EC4Neuro model. Theme 1 identified the core components of micro-level integrated care: expert knowledge, person- and family-centred care, care coordination and continuity of care. Theme 2 underlined access inequities. Theme 3 highlighted people's responsibility to manage care without true agency to do so. The workshops prioritized strategies that enhance relational continuity between service users and providers. A tiered strategy was undertaken to support decision-making towards improving person-centred outcomes.
EC4Neuro is the first integrated care model developed in HD. Its co-designed approach with end users successfully embedded people's perspective to guide what needs to be achieved at the micro-level. The EC4Neuro model offers prospective replication opportunities, particularly for stakeholders concerned with reducing access inequities and supporting relational continuity.
A group of 25 experts by lived experience of HD and other neurological disorders, co-designed this research project, working with the researchers from conception of the studies to analysis and interpretation of the data.
There is a great deal of variation in the design and delivery of the peer health navigator role, making it difficult to adapt role responsibilities into context. In this study, we aimed to co-design a bicultural peer health navigator (BPHN) role to meet the needs of culturally and linguistically diverse (CALD) people from Pacific Islander, Māori and Arabic-speaking backgrounds.
A two-phase co-design approach involving workshops with follow-up member checking via interview was used to gain insight into factors affecting patient interaction and access barriers to health services.
Barriers described by participants emerged under five major themes—overcoming language barriers, improving communication, navigation and access to information, appointment reminders, and health and social services education in the community.
Clear tasks for the BPHN role were identified by the participants to improve accessibility and usage of healthcare services. Future work should involve feasibility testing with the support and involvement of community members, BPHNs and their supervisors and importantly health service leaders.
Four of the authors were employed as bicultural peer health navigators (BPHNs) who engaged their communities to organise and conduct these workshops in their preferred language. This approach enabled an inclusive environment for the participants to share their thoughts and experiences. The proposed roles for a BPHN were generated from the workshop discussions. The BPHNs conducted the semi-structured verification interviews with the workshop participants. The thematic analysis was conducted by two of the BPHNs, with one being the primary author.
Older adults with multimorbidity often experience fragmented transitional care between the hospital, primary care, and municipal services. Insufficient communication and limited user involvement can compromise safety, satisfaction, and continuity. To address these challenges, a structured cross-sectoral intervention, the Virtual 4-Party Meeting (V4M), was developed to enhance patient and family involvement in discharge planning.
To explore how older adults with multimorbidity and their relatives experienced involvement in transitional care through V4M.
A qualitative hermeneutic design was applied. Eleven patients ( + 65 years) and their relatives participated in semi-structured interviews immediately after V4M and again 14 days post-discharge. Data were analyzed using Braun and Clarke's reflexive thematic analysis within a Gadamerian hermeneutic framework.
Three themes emerged: (1) Bridges between Systems. V4M reduced fragmentation and improved coordination through shared dialog; (2) A Relational Space of Alignment, the meetings created emotional safety and supported patient autonomy and relational understanding; and (3) Involvement and Responsibility are deeply interconnected. Meaningful involvement occurred when accountability was shared between patients, relatives, and professionals.
V4M provided an effective model for integrating user involvement into transitional care by combining structural coordination with relational engagement. Patients and relatives felt acknowledged, informed, and reassured when professionals gained a clearer sense of shared responsibility. The study highlights that genuine user involvement depends on both emotional recognition and concrete accountability mechanisms across sectors.
Older adults with multimorbidity and their relatives contributed to the development of the V4M intervention. In this study, patients and relatives participated as interviewees but were not involved in data analysis or manuscript preparation.
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