Quality of life and care burden in primary caregivers of liver transplantation recipients in China

Wei, Long; Li, Juan; Cao, Yanpei; Xu, Jianming; Lu, Huijuan

doi:10.1097/md.0000000000010993

Cited by 11 publications

(19 citation statements)

References 27 publications

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“…In the present study, approximately half the participants were working when they committed to being a caregiver. Similar to others reports, 5,17,18 caregivers who were working had to suspend their own careers to take up a caregiving role, which may have contributed to additional stress. None of the caregivers in the present study had insurance coverage for caregiver-related expenses, and in some situations, this also contributed to financial concerns.…”

Section: Discussionsupporting

confidence: 76%

“…This finding is notable since transplant caregiver knowledge has been associated with less anxiety and depression, and confidence in handling daily tasks, and improved quality of life. 5,12 Moreover, caregiver quality of life has been shown to impact transplant recipients’ mortality, with greater impairments in caregiver health perceptions at 1 year predicting poorer transplant recipient survival. 6…”

Section: Discussionmentioning

confidence: 99%

“…Education and support for recipients and caregivers is an ongoing quality improvement initiative within our institution. Several studies have explored the quality of life and psychosocial aspects of being a lung transplant caregiver, 4 –6 but less attention has been given to their educational needs, particularly for those who travel significant distances to the transplant center. Moloney and colleagues interviewed lung recipients and caregivers from the Toronto Lung Transplant Program to determine their educational needs during the decision-making process.…”

Section: Background/introductionmentioning

confidence: 99%

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A Qualitative Study to Explore the Needs of Lung Transplant Caregivers

et al. 2020

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Introduction: Providing support throughout the lung transplant process is an intensive task, which requires a dedicated caregiver. The needs of caregivers who must relocate with their loved one receiving the transplant are currently unknown. The objective of this study is to explore experiences and perceptions of lung transplant caregivers identified from a satellite clinic to inform the development of educational resources. Methods: A qualitative study with a phenomenology approach was undertaken with individuals who have taken on the role of a caregiver for lung transplant candidates or recipients and must travel to the specialized transplant center. Semistructured interviews were conducted with 12 caregivers. Interviews conducted by phone were audio-recorded and then transcribed verbatim. NVivo software was used to code the data and identify emerging themes. Results: Ideas were classified into the following 4 themes: (1) the stress of being a caregiver, (2) caregivers undertake a variety of roles, (3) caregivers require support, and (4) satisfaction with health care providers. Even though the caregivers lived an average of 7.1 (standard deviation 2) hours from the surgical transplant center, all expressed satisfaction with the level of care that they received. Caregivers identified several stressors during the transplant process and described various strategies for coping. Conclusion: Caregivers shared their experiences on the transplant process. It was evident that being a caregiver was a stressful and supports were necessary for those undertaking this role. These insights will help inform the development of a new educational resource for patients and caregivers.

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Section: Discussionsupporting

confidence: 76%

Section: Discussionmentioning

confidence: 99%

Section: Background/introductionmentioning

confidence: 99%

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A Qualitative Study to Explore the Needs of Lung Transplant Caregivers

et al. 2020

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“…Previous studies have shown that a poor caregiver QOL predicts that a LT recipient will receive low quality care by their caregiver. 1,2,6 Furthermore, caregivers with a heavy financial burden have a poorer QOL, which leads to less optimal care delivery for the LT recipient. 1,2 The focus during the LT evaluation process is often shifted to the individual receiving the transplant.…”

Section: Introductionmentioning

confidence: 99%

Approaches to Assessing Burden in Caregivers of Patients with Cirrhosis

Yanny

Pham

Saleh

et al. 2020

Journal of Clinical and Translational Hepatology

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Background and Aims: Being a caregiver for a patient with chronic liver disease (CLD) can be burdensome mentally, emotionally financially, and physically. The aim of this study was to systemically review the available tools and propose tools that can comprehensively evaluate caregiver burden for individuals caring for patients with CLD. Methods: We searched the PubMed database for all studies on the impact of patients with CLD on caregiver burden without timeframe restriction. Eligible studies included cohort studies, review studies, or cross-sectional studies. The number of patients and caregivers was isolated from each paper. Studies in the same categories were isolated and statistically compared. Results: A total of 13 studies meeting our inclusion criteria as stated in the methods sections were included. In total, 2528 caregivers were taking care of 2003 patients with CLD. Women made up the majority of caregivers at 78.2%, 95.7% of whom identified as the patient's spouse. Caregiver strain index is one of the most comprehensive tools; however, the questions are very general and do not fully elucidate financial strain. Beck depression and anxiety were correlated (p=0.0001), and both depression and anxiety were correlated with perceived caregiver burden (PCB) and Zarit Burden Interview (ZBI) (p=0.002). Depression scale correlated with Interpersonal Support Evaluation-Short Form, and Model for End-Stage Liver Disease score correlated with ZBI and PCB (total and in most domains; p=0.001). Patient's poorer cognitive performance correlated with higher ZBI and PCB (employed patients had higher cognitive performance and lower ZBI and PCB). Conclusions: Caregiver burden remains poorly understood due to the lack of uniformity in the assessment tools used to evaluate caregiver burden. None of the tools used to evaluate caregiver burden are comprehensive; however, most tools correlate statistically in the ability to identify caregiver burden. A comprehensive tool is lacking for identifying caregiver burden in patients with CLD.

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“…Entre los requerimientos para someterse a un trasplante, el contar con un Cuidador Primario Informal (CPI) que acompañe al paciente es vital. El cuidador cumple con múltiples funciones que incluyen: contribuir al equilibrio y estabilidad emocional del paciente; favorecer la adherencia al tratamiento; auxiliar en las medidas de higiene, nutrición, ocio, así como descanso; realizar trámites hospitalarios; proveer y ministrar medicamentos; asistencia en actividades relacionadas con la rehabilitación con el fortalecer la adaptación a la cotidianidad 6,[12][13][14][15][16][17] . Todas estas acciones son parte de los objetivos que se relacionan con el índice elevado de supervivencia junto con la calidad de vida, durante y después del trasplante 18,19 .…”

Section: Introductionunclassified

Intervenciones psicológicas en cuidadores primarios de pacientes con trasplante de células hematopoyéticas: Revisión descriptiva

et al. 2020

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Introducción: El ser cuidador primario informal de un paciente con indicación médica de trasplante de células progenitoras hematopoyéticas puede tener consecuencias negativas en su salud mental y calidad de vida. Objetivo: Describir las intervenciones psicológicas disponibles para el cuidador primario de pacientes sometidos a trasplante de células hematopoyéticas. Metodología: Se realizó una búsqueda sistematizada de los últimos 10 años con los términos MeSH: psychotherapy AND caregive AND stem cell transplantation en las principales bases de datos médicas y de psicología, para su análisis se empleó la estrategia: Problema, Intervención, Comparación y Outcomes (PICO). Resultados: Se identificaron 122 artículos, de ellos diez cumplieron los criterios de inclusión. Las intervenciones provenían de profesionales de enfermería o trabajo social; el 50% incluyó diadas (paciente y cuidador primario), mostraron una tendencia de duración corta, enfocada al periodo posterior al trasplante. Se basan en el entrenamiento en solución de problemas, manejo de estrés, atención plena y expresión emocional. Las intervenciones lograron la disminución de la depresión, ansiedad y estrés en el cuidador; pero no alcanzaron permanencia en la significancia estadística de dichos restablecimientos. Discusión: De acuerdo con lo observado en las publicaciones y por su impacto positivo en la salud mental, se recomienda la implementación de intervenciones psicológicas en cuidadores de pacientes con trasplante de células progenitoras hematopoyéticas. Conclusión: El apoyo psicológico brindado al cuidador generalmente es de profesionales de la salud que no pertenecen al área de la psicología, con resultados clínicos favorables en las etapas más críticas de su estado mental.

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Quality of life and care burden in primary caregivers of liver transplantation recipients in China

Cited by 11 publications

References 27 publications

A Qualitative Study to Explore the Needs of Lung Transplant Caregivers

A Qualitative Study to Explore the Needs of Lung Transplant Caregivers

Approaches to Assessing Burden in Caregivers of Patients with Cirrhosis

Intervenciones psicológicas en cuidadores primarios de pacientes con trasplante de células hematopoyéticas: Revisión descriptiva

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