Caregiving across the lifespan: comparing caregiver burden, mental health, and quality of life

Oliveira, Gabriela Romano de; Neto, José Fittipaldi; Camargo, Sthephanie Marques de; Lucchetti, Alessandra Lamas Granero; Espinha, Daniele Corcioli Mendes; Lucchetti, Giancarlo

doi:10.1111/psyg.12087

Cited by 46 publications

(28 citation statements)

References 42 publications

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“…The Zarit Burden Score was used to determine psychosocial stress [5]. The quality of life of relatives and caregivers was assessed using the SF-36 questionnaire [9].…”

Section: Assessment Of Quality Of Life Of Patients and Caregiversmentioning

confidence: 99%

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Nagel

Labenz

Wörns

et al. 2020

Health Qual Life Outcomes

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Background: Patients with liver cirrhosis often suffer from complications such as ascites, gastrointestinal bleeding, and infections, resulting in impaired quality of life. Frequently, the close relatives of patients also suffer from a lower quality of life in chronic diseases. In recent years, acute-to-chronic liver failure has been defined as a separate entity with high mortality. Often several organs are affected which makes intensive care therapy necessary. Little is known about the influence of acute-on-chronic-liver failure (ACLF) on the quality of life of patients and the psychosocial burden on close relatives.Aim: The purpose of this prospective study is to investigate the influence of decompensated liver cirrhosis and the onset of ACLF of the patient's' quality of life and the psychosocial burden of close relatives.Method: In this nonrandomized prospective cohort study a total of 63 patients with acute decompensation of liver cirrhosis and hospital admission were enrolled in the study. To assess the quality of life of patients, the disease specific CLDQ questionnaire was assessed. In addition. Quality of life and psychosocial burden of first degree relatives was measured using the generic SF-36 questionnaire as well as the Zarit Burden Score.Results: 21 of the 63 patients suffered from ACLF. Patients with ACLF showed a lower quality of life in terms of worries compared to patients with only decompensated liver cirrhosis (3,57 ± 1,17 vs. 4,48 ± 1,27; p value: 0,008) and increased systemic symptoms (3,29 ± 1,19 vs. 4,48 ± 1,58; p value: 0,004). The univariate analysis confirmed the link between the existence of an ACLF and the concerns of patients. (p value: 0,001). The organ failure score was significantly associated with overall CLDQ scores, especially with worries and systemic symptoms of patients. Interestingly the psychosocial burden and quality of life of close relative correlates with patient's quality of life and was influenced by the onset of an acute-on-chronic liver failure. Conclusion: Patients with decompensated liver cirrhosis suffer from impaired quality of life. In particular, patients with ACLF have a significantly reduced quality of life. The extent of the psychosocial burden on close relative correlates with poor quality of life in patients with decompensated liver disease and is influenced by the existence of ACLF.

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“…The Zarit Burden Score was used to determine psychosocial stress [5]. The quality of life of relatives and caregivers was assessed using the SF-36 questionnaire [9].…”

Section: Assessment Of Quality Of Life Of Patients and Caregiversmentioning

confidence: 99%

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Nagel

Labenz

Wörns

et al. 2020

Health Qual Life Outcomes

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“…Literature reviews and meta-analyses confirm the association between greater mental burden and poorer physical and mental well-being: the responsibilities and the stressful experiences related to the caregiving role can cause depression, anxiety, worry and loneliness [17][18][19][20][21][22]. Moreover, family caregivers may also experience a greater mental burden and emotional distress that could impact on fatigue, sleep impairment and unhealthy behaviours [23][24][25][26]. Several studies have demonstrated how caregivers suffer from highly distressing conditions impacting not only on psychological dimensions but also their biological system.…”

Section: Introductionmentioning

confidence: 93%

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review (Preprint)

Marzorati¹,

Renzi²,

Russell-Edu³

et al. 2018

Preprint

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“…Another institutional and life-course assumption is the view of such unpaid family care as optimal for care receivers and society. Care is institutionalised across the life course, with different expectations, durations and definitions of care at different ages and life stages, and across different cohorts (Pearlin and Aneshensel, 1994; Aneshensel et al, 1995; De Oliveira et al, 2015; Eifert et al, 2016). …”

Section: An Institutional and Life-course Approachmentioning

confidence: 99%

“…He proposes: ‘The basic idea is take the measurement of ecological properties and social processes as seriously as we have always taken individual-level differences’ (Sampson, 2010: 72). There are a few exemplary studies that look at the broader social welfare context (Eichler and Pfau-Effinger, 2009; Jang et al, 2012; Sole-Auro and Crimmins, 2014; Tokunaga et al, 2015) in addition to exemplars viewing care work as a life-course process (Pavalko and Woodbury, 2000; Marks et al, 2008; Barnett, 2015; De Oliveira et al, 2015; Carmichael and Ercolani, 2016; Glauber, forthcoming). However, emphasis on dynamic processes and dynamic institutional contexts could capture what is working and what is not.…”

Section: Implications For Policy-relevant Researchmentioning

confidence: 99%

Family care work: a policy-relevant research agenda

Moen

DePasquale

2017

International Journal of Care and Caring

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This article addresses the need for policy-relevant research agendas on family care in transaction with formal care and public as well as organisational norms and policies in light of the crisis in caregiving for older adults. We propose a combined institutional and life-course theoretical approach, suggesting seven ways of organising scholarly enquiry to promote understanding of the changing nature of family care in the 21st century, inform policymakers’ efforts at supporting family caregivers and improve caregivers’ and care recipients’ quality of life. These include: (1) moving beyond snapshots of individuals; (2) conducting comparative cross-cultural and crosscohort analyses; (3) documenting social heterogeneity, vulnerability and inequality; (4) capturing individuals’ and families’ adaptive strategies and cycles of control during the caregiving process; (5) investigating policy innovations and natural experiments; (6) assessing third parties as mediating institutions between regulatory environments and caregiving families; and (7) attending to the subjective meanings of care.

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Caregiving across the lifespan: comparing caregiver burden, mental health, and quality of life

Cited by 46 publications

References 42 publications

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review (Preprint)

Family care work: a policy-relevant research agenda

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