Meaningful relations; Patient and family carer encountering death at home (MeRela)

Project

MeRela project's (Meaningful relations - patient and family carer encountering death at home, 2017-2020) aim is to investigate how personal relations influence end-of-life care of an older adult (over 65) and her/his family carer in the setting of a private home.

The number of patients in home-based end-of-life care in Finland is increasing. However, the shift in balance from institution-centred care to a relationship-centred ideal have not been well studied. As a concept, meaningful relations stems from theories of meaning in life and relationality. In order to test the topic and methods we conducted a pilot study which later resulted in the MeRela project (2017-2020). Part of the testing and development of the method was conducted by utilizing Pictor technique.

The aim is to investigate how personal relations influence end-of-life care of an older adult (over 65) and her/his family carer in the setting of a private home.

The aim is obtained through the following research questions:

1. How do the relationship networks construct the home as a site of end-of-life care?
2 .How are culture/religion expressed as a source of meaning in the relations of end-of-life care?
3. How are the rights and autonomy of the dying patients constructed within and through meaningful relationships?

The MeRela project will be implemented in three work packages each of which responds to one of the research questions:

WP1: The home as a place (social and care services), leader Prof. Marjaana Seppänen

WP2: Culture and religion (meaning in life, continuing bonds), leader Prof. Auli Vähäkangas

WP3: Rights, autonomy and ethics of care, leader Senior lecturer Anna Mäki-Petäjä-Leinonen

Interviews have been undertaken with persons with Advanced Disease (AD) in the last year of life, active family carers and bereaved carers (total 45). The expected results formulate a theory of relational grief and will develop empirical research on relationality in legal context. The MeRela project provides deeper understanding on the human experience when confronting death, dying, and bereavement. To be able to provide support and care for dying and carer it is crucial to identify personal meaning-systems and worldview.

The consortium is formed by the main research site at the Faculty of Theology at the University of Helsinki (UH) and the consortium partner, the Law School of the University of Eastern Finland (UEF). The project has received funding from the Kone Foundation, the Finnish Cultural Foundation and Oskari Huttunen Foundation.

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