Informal Caregiving for People With Life-Limiting Illness: Exploring the Knowledge Gaps

Abstract

Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O’Malley’s framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.

Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens

“…ICs face complex challenges during their caregiver experience as also highlighted in a previous scoping review. 41 The results of both scoping reviews, when combined, will lead the way toward policy reform by identifying the existing gaps and potential solutions alongside the formulation of new strategies to better support ICs providing EOL care. Ultimately, policy and practice should focus on making current financial aid, education, and psychological interventions more accessible to caregivers.…”

“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

“…Many caregivers in the current study expressed frustration with the health care system as they did not feel supported in their role and lacked important information on how to care for the patients. A recent scoping review noted similar health system issues as caregivers did not have the basic information they needed to provide care at home, or the knowledge of how to access resources and services that could assist them in this role [38]. Since PC should be both patient-and family-centered, health care teams must provide adequate support and anticipatory guidance to caregivers, ensuring they feel prepared in their role and have access to necessary resources.…”

Caregiver activation of relatives of patients with advanced cancer

“…A diagnosis of advanced cancer has immense physical, emotional, social, and practical impact on the lives of both patients and their relatives (Ellis, 2012 ; Lung et al, 2022 ; Stenberg et al, 2010 ). Relatives often have important and extensive caregiving responsibilities (Lung et al, 2022 ; van Ryn et al, 2011 ).…”

“…A diagnosis of advanced cancer has immense physical, emotional, social, and practical impact on the lives of both patients and their relatives (Ellis, 2012 ; Lung et al, 2022 ; Stenberg et al, 2010 ). Relatives often have important and extensive caregiving responsibilities (Lung et al, 2022 ; van Ryn et al, 2011 ). In 2015, the majority of informal caregivers of patients with cancer in England indicated to provide up to nineteen hours per week of care for their loved one (Buckner & Yeandle, 2015 ).…”