Family caregiver learning—how family caregivers learn to provide care at the end of life:  A qualitative secondary analysis of four datasets

Abstract

Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

“…It is important to provide tailored and accessible information about the services available; training related to lifting and handling; medication management and administration; and dealing with symptoms and other forms of caregiver distress. A recent study found that caregivers learn through processes such as trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences [53]. As in this study, caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or explained by others, instead of learning reactively after a crisis.…”

The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers

“…These needs included: education in managing symptoms, [15][16][17][18]22,24,28 management of medications, 16,18 assisting patients in daily life activities, 16,19,22,28 resources available in the community 16,19 , and addressing emergencies at home. 28 Due to the scarce information provided on occasions by health professionals or to its generalization during hospital discharge, 16,24 family caretakers identified problems related to moving the patients at home, ignorance of the diet they could supply, 22,23 readjustments of medication dosage, uncontrolled symptoms, 28 and feelings of uselessness and confusion. 15,18 Continuous support to the dyad at home…”

“…17,19 With respect to monitoring at home by a health professional, evidence demonstrated that it favored management of medication and control of symptoms, diminishes patient and caregiver uncertainty, facilitates discussion around endof-life themes, provides nutritional advice, helps with handling technical equipment, and gives individuals a sense of security and supervision in the care labor. 15,17,19,20,22,23,27 Lastly, the dyads who did not receive support after hospital discharge described learning how to handle the sick person at home through trial and error, 28 delays when seen by reference personnel in the community due to their unawareness, 15,16,26 expecting little from the home healthcare 22 , and neglect by the attending hospital. 21 Care overload: social support for the family caretaker…”

Next of Kin’s Experiences of Shame in End-of-Life Care

“…It is not only the next of kin but also other relatives, friends, and health professionals who can be part of the caring and have opinions about how it should be performed. 4 The next of kin can be vulnerable in these situations; and even if they feel that they have done some things right, there may still be doubts that it was not good enough. It can be easier to see shortcomings, and experiences of shame can be close at hand if the next of kin begin to doubt their contributions in the end-of-life situation.…”

“…It can include feelings of losing much of what has been important in life that can lead to bitterness and sadness, [1][2][3] whereas it can also be experienced as rewarding and meaningful, which can leave a sense of pride and self-esteem. 4 The next of kin often want to attend to the needs and wishes of the dying person as well as being present at the time of death. 5,6 They can make themselves available 24 hours a day to be close to the dying person or in order to maintain a sense of control over the course of events.…”