scholarly journals Burden, Quality of Life, and Palliative Care for Family Caregivers of Individuals with Advanced Liver Disease: a Systematic Literature Review

2021 ◽  
Author(s):  
Christopher D. Woodrell ◽  
Arnab Mitra ◽  
Andrew Hamilton ◽  
Lissi Hansen
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Liver Disease ◽  
Family Caregivers ◽  
Prospective Studies ◽  
Family Caregiver ◽  
Advanced Liver Disease ◽  
Cross Sectional

Abstract Purpose of Review Identify and describe prior studies of family caregiver quality of life, health, and burden experienced while caring for patients with advanced liver disease and the possible role of palliative care. Recent Findings Thirty-six articles were identified that met inclusion criteria. Studies identified included cross-sectional, longitudinal, and prospective intervention studies, with a high proportion of qualitative and descriptive research. Resulting studies addressed type of family caregiver burden, including physical, psychological, and financial causes of burden, including HE, lack of information and communication, and unpredictability of the disease course. Few prospective studies were identified. The interventions described included nurse-led palliative care, mindfulness-based stress reduction, and coping interventions. Summary Little has been published on the nature of family caregiving, burden, quality of life, or the role of palliative care for family caregivers of people with advanced liver disease. Prospective studies that address unmet family caregiver needs, including palliative care interventions, are lacking.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

Family caregivers’ perceived communication self-efficacy with physicians

2020 ◽  
pp. 1-7
Author(s):  
Elaine Wittenberg ◽  
Anna M. Kerr ◽  
Joy V. Goldsmith
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Self Efficacy ◽  
Online Survey ◽  
Skill Training ◽  
Communication Skill Training ◽  
Cross Sectional ◽  
The Family

Abstract Objective Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. Method A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. Results An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. Significance of results Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

Perceived caregiving preparedness and quality of life among Indonesian family caregivers of patients with life-limiting illness

2021 ◽  
Vol 27 (6) ◽  
pp. 293-301
Author(s):  
Erna Rochmawati ◽  
Yuli Prawitasari
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Member ◽  
Family Caregivers ◽  
Family Members ◽  
Cross Sectional Study ◽  
World Health ◽  
Cross Sectional ◽  
World Health Organization Quality

Background: Family caregivers play an important role in palliative care. However, family caregivers often report that they felt insufficiently prepared to become a caregiver. This lack of preparedness may lead to a decline in the caregiver's quality of life (QoL), and they may not be able to provide sufficient palliative care to their family member. Aims: To investigate the preparedness of family members to become caregivers alongside their QoL. Method: A correlational cross-sectional study design was used. A sample of 104 family caregivers completed a World Health Organization Quality of Life Brief to assess the QoL of participants. The Caregiving Inventory (CGI) was used to assess how prepared family members felt to become care-givers, and the CGI also included questions related to the patient's socio-demographic status and illness. Correlation analysis was used to address the research questions. Caregivers were caring for a family member with a life-limiting illness in a suburban district of Indonesia. Findings: The 104 family caregivers had a relatively low score for both QoL and caregiving preparedness. A caregiver feeling more prepared was associated with a higher QoL. The study also found a positive correlation (r value, between 0.236–0.481) between perceived caregiving preparedness, including its factors, and domains of QoL. Conclusion: A person's preparedness to become a caregiver is significantly associated with all QoL domains: physical, psychological, social and environmental. Family members can be better prepared to become a caregiver with training and information about personal care and symptom management.

scholarly journals Palliative care for people with advanced liver disease: A feasibility trial of a supportive care liver nurse specialist

2018 ◽  
Vol 32 (5) ◽  
pp. 919-929 ◽  
Author(s):  
Barbara Kimbell ◽  
Scott A Murray ◽  
Heidi Byrne ◽  
Andrea Baird ◽  
Peter C Hayes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Liver Disease ◽  
Supportive Care ◽  
Feasibility Trial ◽  
Decompensated Cirrhosis ◽  
Nurse Specialist ◽  
Care Planning ◽  
Advanced Liver Disease

Background: Liver disease is an increasing cause of death worldwide but palliative care is largely absent for these patients. Aim: We conducted a feasibility trial of a complex intervention delivered by a supportive care liver nurse specialist to improve care coordination, anticipatory care planning and quality of life for people with advanced liver disease and their carers. Design: Patients received a 6-month intervention (alongside usual care) from a specially trained liver nurse specialist. The nurse supported patients/carers to live as well as possible with the condition and acted as a resource to facilitate care by community professionals. A mixed-method evaluation was conducted. Case note analysis and questionnaires examined resource use, care planning processes and quality-of-life outcomes over time. Interviews with patients, carers and professionals explored acceptability, effectiveness, feasibility and the intervention. Setting/participants: Patients with advanced liver disease who had an unplanned hospital admission with decompensated cirrhosis were recruited from an inpatient liver unit. The intervention was delivered to patients once they had returned home. Results: We recruited 47 patients, 27 family carers and 13 case-linked professionals. The intervention was acceptable to all participants. They welcomed access to additional expert advice, support and continuity of care. The intervention greatly increased the number of electronic summary care plans shared by primary care and hospitals. The Palliative care Outcome Scale and EuroQol-5D-5L questionnaire were suitable outcome measurement tools. Conclusion: This nurse-led intervention proved acceptable and feasible. We have refined the recruitment processes and outcome measures for a future randomised controlled trial.

HUBUNGAN PERAN FAMILY CAREGIVER TERHADAP QUALITAS HIDUP LANSIA

2019 ◽  
Vol 11 (1) ◽  
pp. 51-56
Author(s):  
RIANI PRADARA JATI ◽  
Sekar Farah Nabila
Keyword(s):  
Quality Of Life ◽  
Family Caregiver ◽  
Random Sampling ◽  
Simple Random Sampling ◽  
The Elderly ◽  
Chi Square ◽  
The Poor ◽  
The Family

  Penempatan peran yang baik bagi Family Caregiver sangatlah membantu lansia dalam meningkatkah qualitas hidupnya, meningkatkan motivasi dalam menjalankan hidup Penelitian ini bertujuan Mengetahui hubungan peran Family Caregiver dalam pemenuhan qualitas hidup bagi lansia di Kelurahan Langenharjo Kabupaten Kendal. DesainPenelitianDeskriptifKorelasional menggunakan pendekatan Krosectional,tehnikSamplingStratified Simple Random Sampling dengan karakteristik heterogen, dari populasi mempunyai hak yang sama untuk diseleksi sebagai sampel teknik undianPengambilan data dengan menggunakan kuesioner yang telah diuji validitas dan reliabilitasnya. Uji statistik Chi-square, dengan taraf signifikasi 5%jumlah sampel pada penelitian ini 70 sampel pada Family Caregiver dari 213 populasi yang ada. Hasil penelitian dari 70 responden didapatkan Peran Family Caregiver tidak baik dengan qualitas hidup tidak baik 33 (47,1%), sedangkan Peran Family Caregiver kurang baik dengan qualitas hidup lansia baik 3 (4,3%). Untuk distribusi Peran Family Caregiver kurang baik dengan qualitas hidup lansia tidak baik sebanyak 6 responden (8,6%) sedangkan untuk distribusi Peran Family Caregiver kurang baik dengan qualitas hidup lansia baik sebanyak 23 responden (32,9%). Terakhir, untuk distribusi Peran Family Caregiver baik dengan qualitas hidup lansia tidak baik didapatkan hasil 2 responden (2, 9%) sedangkan untuk distribusi Peran Family Caregiver baik dengan qualitas hidup lansia baik didapatkan hasil 3 responden (4,3%)Menunjukkan nilai ρ value 0,001 (ρ < 0,05) berarti ada hubungan antara dukungan keluarga dengan kepatuhan lansia dalam keikutsertaan posyandu lansia. Disarankan kepada semua Family Cregiver lansia untuk mampu memahami pentingnya perhatian, dukungan bagi lansia dalammeningkatkan qualitas hidup yang lebih baik bagi lansia.   Kata kunci : Peran family caregiver, qualitas hidup, lansia.   ABSTRACT Placement of a good role for Family Caregiver is very helpful for the elderly to improve their quality of life, increase motivation in living life Research Objective: To know the relationship between the role of Family Caregiver in fulfilling quality of life for the elderly in Langenharjo Village, Kendal Regency. Descriptive Correlational Research Design uses a cross sectional approach, Sampling Stratified Simple Random Sampling technique with heterogeneous characteristics, from the population has the same right to be selected as a sample lottery technique Retrieving data using a questionnaire that has been tested for validity and reliability. Test Chi-square statistics, with a significance level of 5% the number of samples in this study 70 samples on the Family Caregiver from 213 populations. Results of the Study Of 70 respondents found the role of Family Caregiver was not good with poor quality of life 33 (47.1%) , while the role of the Family Caregiver is not good with the quality of life of a good elderly 3 (4.3%). For the distribution of the role of Family Caregiver is not good with the quality of life of the poor family as many as 6 respondents (8.6%) while for the distribution of the Role of Family Caregiver is not good with the quality of life of good elderly as many as 23 respondents (32.9%). Finally, the distribution of the Role of Family Caregiver with good quality of life for the poor is obtained by 2 respondents (2, 9%), while the distribution of the Role of Family Caregiver with good quality of life for the elderly is obtained by 3 respondents (4.3%). 0.001 (ρ <0.05) means that there is a relationship between family support and the compliance of the elderly in the participation of the elderly posyandu. It is recommended to all elderly Cregiver families to be able to understand the importance of attention, support for the elderly in improving the quality of life better for the elderly   Keywords: Role of Family Caregiver, Quality of Life, Elderly

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Quality of life of patients with lung cancer: A scoping review

2019 ◽  
Vol 22 (2) ◽  
Author(s):  
Rafael Turano Mota ◽  
Helder Márcio Ferreira Júnior ◽  
Fabiane Silva Pereira ◽  
Maria Aparecida Vieira ◽  
Simone de Melo Costa
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Scoping Review ◽  
Prospective Studies ◽  
Current Knowledge ◽  
Care Quality ◽  
Life Questionnaire ◽  
Cross Sectional ◽  
European Organization

Abstract Objective: To characterize scientific publications on the quality of life of people with lung cancer in order to explore current knowledge of the subject, with emphasis on assessment instruments and methodological aspects. Method: A scoping type literature review was performed. Articles were sought in the databases of the Virtual Health Library, in an integrative manner, with the descriptors: Quality of life and Lung Neoplasms, with no date of publication or language restrictions (n=138). The selection of articles was based on inclusion and exclusion criteria defined in the study proposal. Results: We included 18 publications published between 2006 and 2017, the majority (n = 10) of which had a cross-sectional design. Eight different instruments were used to evaluate the quality of life of patients with lung cancer, four of which were specific for people with cancer. There was a prevalence of the use of the European Organization for Research and Treatment of Cancer Care Quality of Life Questionnaire - EORTC QLQ-C30 (n=8). Prospective studies (n=8) assessed quality of life before and after chemotherapy, physical therapy or pulmonary resection. The studies adopted different methodologies and provided conflicting results of quality of life. Cross-sectional studies with comparatively healthy subjects found an inferior quality of life for people with lung cancer. Conclusion: The scoping review contributed to the identification of the multiple evaluated instruments, both generic and specific. It found a lack of homogeneity in the methodological approaches of the studies. Further prospective studies with a specific instrument and methodological standardization to evaluate the quality of life of people with lung cancer are recommended.

Assisting People With Their Living, Not Their Dying: Health Professionals’ Perspectives of Palliative Care and Opioids in ILD

2021 ◽  
pp. 104990912110186
Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care System ◽  
Therapeutic Relationships ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Symptom Palliation ◽  
Care System

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

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