The goal of the research project is first, to improve the quality of advanced care planning, second, to gain insights into the process of implementation of integrated advanced care planning with a first contact person and its impact, and third to improve the interprofessional community of practice between health and social care professionals, citizens and volunteers.
The project has a participatory action design. Participants are people who need palliative care, family carers, health and social care professionals, citizens and volunteers.
The research process has five phases:
Phase 1: Gaining knowledge of the characteristics of people who need palliative care, their care wishes and needs based pm the four dimensions of palliative care.
Phase 2: Gaining insights into the formal and informal care arrangements
Phase 3: Desiging an integrated advanced care planning with a first contact person.
Phase 4: Piloting and implementing the newly-designed integrated advanced care planning with a first contact person.
Phase 5: Evaluating the pilot-implementation, quality of care and implementation process.
Collaborating partner are: Maastricht University, Zorgnetwerk Elsloo and Zuyd University of Applied Sciences.
Expected data set:
Phase 1:
- Characteristics of people who need palliative care and family carers: number of people receiving palliative care, age, gender, educational level, ethnicity, medical diagnosis, comorbidity, family carer burden;
- Narrative overview of wishes and needs as experienced by people who need palliative care and family carers;
Phase 2: Gaining insights into the formal and informal care arrangements
- Narrative overview of palliative care services;
Phase 3: Desiging an integrated advanced care planning with a first contact person.
- Minutes and fieldnotes of design meetings;
Phase 4: Piloting and implementing the newly-designed integrated advanced care planning with a first contact person.
- Minutes and fieldnotes of implementation meetings;
Phase 5: Evaluating the pilot-implementation, quality of care and implementation process.
- Fieldnotes of observations of the pilot-implementation;
- Narrative PROMs about the quality of care as experienced by people who need palliative care and family carers;
- Narrative overview of wishes and needs of people who need palliative care and family carers;
- Narratives of the experiences of the implementation process.
