How Do Relatives Experience Advanced Home Care? A Qualitative Study

The provision of around-the-clock care by advanced home care services subjects families and relatives in Germany to significant psychosocial demands. In addition to coping with the serious illness of their family member, they have to compensate for the lack of privacy caused the constant presence of a nurse. Accordingly, they feel ambivalent about caregivers. The qualitative study conducted narrative interviews that addressed the question as to how relatives and families experience home mechanical ventilation. It was possible to identify two main topics: the burdens and health-maintaining resources resulting from the care setting. The main burdens that are experienced include living in a public space, the lack of psychosocial support from service providers, as well as the lack of professional and social skills of the caregivers interacting with families.

“We Are Here for You All the Way”—Patients’ and Relatives’ Experiences of Receiving Advanced Home Care

Background: It is of great importance to understand how patients and their close relatives experience the pros and cons of advanced home care so as to further develop this quickly growing choice of care. Objective: The aim of this study was to explore the experiences of receiving advanced home care among patients affected by life-threatening illness and their close relatives. Design: The study was an interview study conducted with patients in their homes. Some patient interviews were conducted together with a close relative participating. Setting/Participants: Patients registered in advanced home care in 2017 were offered the opportunity to participate in the study. The selection criteria were that the patient was within grade 3 of the Eastern Cooperative Oncology Group’s Performance Status, older than 18 years, able to orient to time and place, and not newly registered. Analysis: The interviews were recorded and transcribed verbatim and analyzed with qualitative content analysis. Results: A total of 11 interviews were conducted: 8 with patients and 1 or 2 close relatives together; and 3 with the patient alone. It resulted in 3 main categories: create a safe environment, see the person, and better to manage care at home. Conclusion: The results of this study show that patients and close relatives perceived that advanced home care was a safe and secure form of caring during advanced as well as end-of-life care.

Bereaved spouses' adjustment after the patients' death in palliative care

ABSTRACTObjectives:To improve the support to bereaved spouses during the year after the patient's death, a project was started consisting of three visits by a nurse (after 1, 3, and 13 months) with conversations about the patient's death and the spouse's life situation. The aim of this study was to describe the bereaved spouse's situation and adaptation during the first year after the loss.Methods:Spouses of patients cared for by The Advanced Home Care Team (APHCT) in Uppsala, Sweden, were invited to participate in the project. Each participant was encouraged to talk freely about his or her situation, but enough direction was given to ensure that all items listed on a standardized questionnaire were covered.Results:Fifty-one spouses met the inclusion criteria and were invited to participate and 45 accepted. The subjects felt quite healthy but were tired and suffered from sleep disturbance. The grief reactions had initially been high but showed a significant decline from 1 to 13 months (p < .01). Forty-nine percent had experienced postbereavement hallucinations.Significance of results:This study showed that the bereaved spouses felt quite healthy and adjusted quite well to their new life situation, after the patient's death in a palliative care setting. The grief reactions had initially been high but showed a significant decline during the year.