Sources of meaning in family caregivers of terminally ill patients supported by a palliative nursing care team: A naturalistic three-month cohort study

Abstract

According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.

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,…”

“…Overall psychological burden in relatives seems to depend on anxiety, depression, patient age, gender, and changes in meaning [12,45,48]. In a qualitative study, Williams et al demonstrated that female family caregivers’ burden can also be caused by the adherence to stereotypical gender norms that affect women as primary caregivers [62].…”

“…Strategies have to be tailored to relatives’ preferences of how, when, and from whom information and support is needed and considered to be helpful. Relatives’ problems and needs are impacted by many different risk factors, including socio-demographic, care-related, and patient-related factors as well as various interactions between different own psychological phenomena [9,10,11,12,39,44,45,47,48,49,50,56,57]. Future research should also further elucidate these complex interactions and mutual mediations of different psychosocial, existential, socio-demographic, and disease-related factors impacting their situation.…”