[End-of-life care: experiences and expectations of bereaved relatives].
ABSTRACT Within end-of-life care concepts, relatives of patients suffering from incurable illness are an important target group. This study aims to explore the experiences of relatives of deceased patients regarding health care delivery within the last days and weeks of life, and to work out implications for patient and relatives oriented improvement strategies.
We conducted 19 qualitative interviews with bereaved relatives addressing the patient's use of health care services and satisfaction with the services, as well as communication and information. Interviews were transcribed verbatim and analyzed using qualitative content analysis.
Three main categories were developed: (1) present health care delivery, e. g. positive and negative experiences concerning communication and information; (2) expectations and wishes, e. g. better support and coordination concerning discharge from hospital; (3) the relative and the dying patient, e. g. attitudes towards death and dying as well as individual limitations and resources. Overall, from the perspective of the bereaved relatives there are deficits concerning coordination of health care delivery and communication.
Improving coordination of health care in particular with regard to the interfaces of outpatient and inpatient care, advanced care planning and strengthening "talking medicine" may contribute to optimize health care delivery for severely ill and dying patients and their relatives.
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ABSTRACT: Objective: To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them. Method: We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods. Results: Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process. Significance of Results: Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.Palliative and Supportive Care 02/2014; · 0.98 Impact Factor