Family Caregivers’ Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study

Abstract

This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers' experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

“…Regarding the year of publication, 36 out of 62 articles were published in 2017 and 28 in 2018. Countries where the respective studies were conducted were the USA/Canada ( n = 23) [9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31], Scandinavia ( n = 7) [32,33,34,35,36,37,38], UK ( n = 4) [39,40,41,42], Germany ( n = 4) [43,44,45,46], Southern Europe (Italy, Portugal, Spain; n = 8) [47,48,49,50,51,52,53,54], East Asia (Japan, China, Korea, Taiwan; n = 4) [55,56,57,58,59,60], Australia/New Zealand ( n = 4) [61,62,63,64], other ( n = 4) [65,66,67,68], and multinational ( n = 2) [69,70].…”

“…Forty-seven studies reported on relatives of advanced cancer patient’s [9,10,11,13,15,16,17,18,19,20,21,22,23,24,26,27,28,29,30,31,32,34,36,37,38,39,42,43,44,46,47,48,49,50,51,52,53,55,56,57,58,59,60,61,65,66,67] and 15 studies included relatives of mixed patient samples [12,14,25,33,35,40,41,45,54,62,63,64,68,69,70]. The environment in which the patient received palliative or hospice care were home care in 18 studies [10,14,25,26,27,30,3...…”

“…The environment in which the patient received palliative or hospice care were home care in 18 studies [10,14,25,26,27,30,33,35,36,37,38,41,42,44,45,54,58,62], specialist inpatient palliative care in four studies [34,43,55,67], inpatient hospice care in 3 studies [13,49,60], mixed settings in 25 studies [9,11,13,19,20,21,22,23,24,28,29,31,32,39,40,47,51,53,56,60,61,63,65,67,70], and 12 other settings/not described [15,16,17,18,46,49,50,52,57,66,68,69]. In 45 studies, the sample only consisted of relatives reporting on their own situation [9,10,11,12,…”

Needs of caregivers of patients receiving in-home palliative and end-of-life care

“…In addition, caregivers report difficulty in adapting to changes in the relationship when the caregiver role becomes predominant, thus redefining the very nature of the relationship (Totman et al, 2015). Finally, caregivers express fears regarding the end-of-life process (Soroka et al, 2018) and recognize a lack of preparedness with respect to bereavement (Mason & Hodgkin, 2019).…”

Besoins des proches aidants qui accompagnent une personne en soins palliatifs et de fin de vie à domicile

“…De plus, les PA rapportent la difficulté de s'adapter aux changements dans la relation lorsque le rôle de soignant devient prépondérant, redéfinissant ainsi la nature de la relation (Totman et al, 2015). Enfin, les PA expriment des craintes par rapport au processus de fin de vie (Soroka et al, 2018) et constatent un manque de préparation au deuil (Mason et Hodgkin, 2019).…”