The place of the patient-caregiver-caregiver partnership and experiences in palliative care support in primary care

Objectives : To understand the current issues in the caregiver-caregiver relationship and apprehend how this concept of humanism-caring is experienced by patients, caregivers in palliative care in primary care.

Thesis project and techniques used :

The healthcare system in France is currently undergoing a structural crisis exacerbated by the Covid-related health crisis (CCNE, 2022b). This is reflected in a shortage of staff and equipment in healthcare establishments and doctors in many French territories, and in poor city-hospital pathway coordination... As a result, care (or caring)is being devalued in favor of cure. The context is very worrying in primary care (CCNE 2022b; HCAM, 2022) despite various reforms including the HPST law (2009) with a decline in medical demography that will have repercussions until at least 2030 coupled with an aging population.

Palliative care in primary care is not spared from the difficulties facing the healthcare system (Bohic, 2018). Coordination is difficult, there is a lack of home visits by private practitioners, and measures aimed at providing patients with access to palliative care at home are ineffective (Bohic, 2018).

These hindrances to the development of palliative care in primary care and the Covid pandemic exacerbate inequalities in end-of-life conditions for those concerned (Saison, 2021) while reinforcing the loss of meaning and exhaustion of caregivers (Derome & Fuchet, 2020).

Interestingly and in parallel, for decades, approaches to care around care and partnership in healthcare have been developing in the face of the dehumanization of care (Cara, 2016; Lecocq, 2017).

Problématique: In primary care, how to care for patients, caregivers and carers involved in palliative and end-of-life care trajectories?

Hypothesis: In primary care, involving patients, caregivers and carers in the accompaniment of palliative care, and until the end of life, improves everyone's lived experience and decision-making processes.

Method: Participatory qualitative research, co-constructed with each of the players involved.

The co-researchers (patients, caregivers and carers) will constantly critically analyze the research data and literature.

Individual semi-directive interviews with patients, caregivers, carers will be conducted to apprehend their lived experiences.

A case study around the Asalée support palliative care professional group will be conducted to capture the experience of the players.

Participant samples will be recruited via Asalée, structures accompanying sick people in a palliative phase (Hospitalisation à domicile, équipe territoriale de soins palliatifs) and finally via a call for participation on social networks (with the support of the national center for palliative and end-of-life care and its partners) in order to recruit people not followed by the aforementioned structures.

The numbers will be defined according to the anchored theorization model for field data analysis.

Ethical aspects: this is a non-interventional research project, with participants informed of the study's progress and their written consent collected. The project will be validated by a CPP and the CNIL.

The Asalée association is a cooperative arrangement between general practitioners and public health nurses (IDSP) trained in therapeutic patient education . In a partnership-based care relationship, IDSPs accompany patients with chronic diseases and carry out preventive missions, aiming to develop their autonomy. In this scheme, financed by the Caisse Nationale d'Assurance Maladie, the humanist management style is based on collective intelligence. This gives nurses the opportunity to propose new support models to improve the quality of life of the patients they care for (Saillard, 2019). Thus, they develop in their professional practices a so-called humanism-caring approach to nursing care, i.e., "a humanistic relationship of partnership, centered on the meaning that the cared-for person gives to his or her health experience and life project" (Cara, 2016).

It is in this context, between cure and care, that a new offer of palliative care in primary care is developing, in which an international literature search was carried out to identify different concepts and models While there are different models of palliative care in primary care, none of them integrates the partnership dimension into the care relationship (Saillard, Working Paper).

Under the direction of Julien CARRETIER and Nora MOUMJID.

Link to theses.fr: https://theses.fr/s393248