Informal Caregivers in Critical End of Life Situations
08.2013 – 12.2014
The project focuses on informal caregiving (care provided by family members or other laymen) in end of life situations at the patient’s home. It addresses critical situations where a person would like to die at home but where inappropriate symptom alleviation, insufficient availability of professional palliative care teams, mental stress, feelings of helplessness and inappropriate responses by the health or social care system, and/or missing equipment lead to unnecessary hospital admissions.
The main objectives are:
1) to identify the criticality of end of life situations as perceived by informal caregivers and to draw a model of the decision making;
2) to explore the support and advice needed to avoid hospital admission on the basis of the responses of the services and professionals;
3) to jointly develop and provide empowering tools for informal caregivers, materials for policy makers, instructional activities for professionals, and, among others, a portrait gallery illustrating good practice examples to be used for awareness raising and campaigns.
The project started in 4 settings: the two different linguistic regions in the cantons of Fribourg and Valais. It has been downscaled and is now conducted in the canton of Fribourg where the relevance of values, opinions, behaviours, expectations, social contexts of informal caregivers are directly put into the development of the cantonal concept and the palliative care structures.
Data collection will consist of:
a) longitudinal case studies about practices and assessments of current informal caregivers,
b) restrospective narrative interviews with bereaved informal caregivers, and
b) expert interviews and focus groups conducted with extension services, physicians, social services, administrators, and other service providers in end of life situations.
For data analysis, a grounded theory approach using constant comparative method will be used. Several feedback loops with informal caregivers and experts are part of the process.
Emphasis is on practical, visible and transferable results. The results will contribute to the aims of the National Palliative Care Strategy by investigating the appropriate level of expertise for informal caregivers and volunteers, by fostering a positive image, and by providing tools for appropriate action for laymen, health professionals and policy makers.
sottas formative works
Dr. Beat Sottas
palliative care, informal caregivers, family caregivers, volunteers