Person-centred care of persons with dementia receiving community care services: co-design of an intervention focusing on developing competencies in measuring, interpreting, and care planning based on person-centred outcome measurement (eSENIORS-Kompetent)

Background

In Switzerland, people with dementia often receive community care services (called “Spitex”). People with dementia report several physical, emotional, social or practical symptoms and needs throughout their disease trajectory and while under the care of such community services. In this sense, dementia can be conceptualised as a life-limiting disease with palliative care needs.

Person-centred outcome measures (PCOMs) are tools suitable for the identification and monitoring of such palliative needs. The Integrated Palliative Care Outcome Scale - Dementia (IPOS-Dem) is an internationally developed and validated tool that maps general palliative and dementia-specific concerns. Caregivers from Spitex organisations would like support in identifying these needs and concerns in daily care. Moreover, they would benefit from clinical decision support tools (CDST) for dealing with important palliative symptoms.

Aims

The overall aim is to establish and strengthen a general palliative care approach for people with dementia in community care. The objectives are (i) To co-design palliative best practice (CDST) for prioritized symptoms and palliative needs in dementia, and to co-design the logical model for the intervention; (ii) To identify barriers and facilitators for implementing the intervention in the Spitex setting and to co-design training materials and a role description for the clinical champions tasked to oversee the delivery of the intervention in each organization; (iii) To explore the feasibility of the intervention using the categories of the RE-AIM framework, and to determine whether the intervention changes competencies and self-efficacy of professional caregivers of using PCOMs.

Method

This is a mixed-methods study consisting of 3 work packages. Work package 1 pursues a qualitative, participatory and iterative design for developing the intervention (Medical Research Council  (MRC) Framework Phase I). It consists of a systematic literature review, a Delphi survey and dyadic interviews to develop the CDSTs, and 3 co-design workshops with various stakeholders to consolidate the CDST and develop the logic model for the intervention.

Work package 2 is also qualitative and participatory (action research) with co-design of the role description and implementation of clinical champions to deliver the intervention in the individual Spitex organisations.

Work package 3 is a pilot, single-group, quasi-experimental pre-post intervention study to explore the feasibility of the intervention ‘eSENIORS Competent: Observing – Listening – Understanding what matters’ (MRC Framework Phase II). Primary endpoints are feasibility using the RE-AIM framework and assessment of competencies and self-efficacy in measuring PROMs. Secondary endpoints include further caregiver and dementia-specific constructs as well as qualitative interviews.

(Expected) Results

We are developing a practice-based intervention in which treatment aids are implemented into community care services together with a PCOM to measure person-centred needs. Clinical champions will help with its  implementation into clinical care.

The project closes a gap in care provision, strengthens the role of nursing within the team and creates an approach that can also be used for other complex situations such as multimorbidity or frailty. In this way, we are jointly contributing to sustainable, person-centred care for people in  the community care setting.