Self-Perceived Burden to Others: Patient and Family Caregiver Correlates

2007 ◽  
Vol 23 (3) ◽  
pp. 135-142 ◽  
Author(s):  
Christine J. Mcpherson ◽  
Keith G. Wilson ◽  
Michelle M. Lobchuk ◽  
Susan Brajtman
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Psychological Symptoms ◽  
Sense Of Self ◽  
Family Members ◽  
Physical Symptoms ◽  
Perceived Burden ◽  
The Family ◽  
Burden Scale

Aims To provide further evidence about the prevalence and correlates of the sense of “self-perceived burden” (SPB) to others, and to examine its association with caregiver reports of burden. Methods The participants were 65 patients with advanced cancer and their family caregivers. Patients completed measures of SPB and family members completed a caregiver burden scale. Results SPB was experienced at minimal to mild levels by 35% of patients, and at moderate to extreme levels by another 28%. It was correlated with some physical symptoms, but more frequently with psychological symptoms. The family members of patients who reported that SPB was a significant problem had higher scores on the caregiver burden scale than family members of other patients (p=0.048), although the overall correlation was modest. Conclusions SPB is a common and distressing concern for many patients receiving palliative care and is associated with a number of other distressing concerns.

scholarly journals Pemodelan Kausal Faktor-Faktor Beban Keluarga dalam Merawat Pasien Kanker Menggunakan Algoritma S2C-Latent

2021 ◽  
Vol 8 (1) ◽  
pp. 189
Author(s):  
Rizki Surtiyan Surya ◽  
Christantie Effendy ◽  
Ridho Rahmadi
Keyword(s):  
Family Caregivers ◽  
Causal Relationship ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Causal Modeling ◽  
Family Burden ◽  
Cross Sectional ◽  
Activity Factor ◽  
The Family ◽  
Specification Search

<p class="Abstrak">Pasien kanker memiliki kebutuhan yang kompleks mulai dari masalah fisik, psikologis, sosial dan spiritual. Keluarga yang merawat pasien kanker disebut<em> family car</em><em>egiver</em>. Seorang <em>family caregiver</em> membantu mengatasi hampir semua permasalahan yang dialami pasien baik saat dirawat di rumah maupun di rumah sakit. Keluarga mengalami suka dan duka dalam merawat pasien. Dalam merawat pasien dengan penyakit kronis, bukan hanya pasien tetapi kesejahteraan dan kualitas hidup <em>family car</em><em>egiver</em> juga penting. Oleh karena itu sangat penting untuk mengetahui bagaimana beban family caregiver dan faktor-faktor yang mempengaruhi beban keluarga dalam merawat pasien.  Beban <em>family car</em><em>egiver</em> dapat diukur menggunakan <em>Caregiver Reaction Assesment</em> (CRA), yang direpresentasikan oleh beberapa faktor. Dengan memahami hubungan kausal antara faktor-faktor beban keluarga, diharapkan dapat membantu untuk mengidentifikasi bagaimana beban <em>caregiver</em> bersumber dan berdampak. Untuk itu, penelitian ini bertujuan untuk mengidentifikasi hubungan kausal antara faktor-faktor yang berhubungan dengan beban family caregiver dalam merawat pasien. Penelitian ini menggunakan algoritma pemodelan kausal bernama <em>Stable Specification Search for </em><em>Cross-sectional Data with </em><em>Latent </em><em>Variable</em> (S3C-<em>Latent</em>) untuk mendapatkan model kausal antara faktor-faktor beban <em>family car</em><em>egiver</em> yang relevan. Dari hasil analisis  pemodelan  didapatkan ada 3 faktor yang memiliki hubungan kausal dan 2 faktor memiliki hubungan asosiasi. Gender memiliki hubungan kausal yang stabil terhadap kesiapan kesehatan dan kesiapan dalam merawat<em>.</em> Sedangkan faktor kesiapan merawat mempengaruhi faktor aktivitas <em>family caregiver</em>, selain itu faktor keuangan memiliki hubungan asosiasi yang kuat dengan faktor aktivitas dan hubungan keluarga. Pemodelan kausal ini dapat digunakan sebagai acuan bagi tenaga kesehatan dalam pelayanan kesehatan yang lebih tepat, efisien, dan efektif di dalam menangani permasalahan beban <em>caregiver</em><em>.</em></p><p class="Abstrak"> </p><p class="Abstrak"><em><strong>Abstract</strong></em></p><p class="Abstrak"><em><span lang="IN">Cancer patients have complex needs ranging from physical, psychological, social</span>,<span lang="IN"> and spiritual problems. Families who</span> take<span lang="IN"> care for cancer patients are called family caregivers. A family caregiver helps </span>to <span lang="IN">overcome almost all problems experienced by </span>the <span lang="IN">patients both while being treated at home and in the hospital. Families experience joy and sorrow in caring for patients. In treating patients with chronic diseases, not only the patient but the family caregiver's well-being and quality of life are also important. Therefore, it is very important to know how the family caregiver's burden is and the factors that affect the family burden in caring for patients. Caregiver family burden can be measured using Caregiver Reaction Assessment (CRA), which is represented by several factors. By understanding the causal relationship between family burden factors, it is hoped that it can help to identify how the caregiver burden is sourced and impacted. Therefore, this study aims to identify the causal relationship</span>s<span lang="IN"> between factors related to the burden on family caregivers in caring for patients. This study uses a causal modeling algorithm called Stable Specification Search for Cross-sectional Data with Latent Variable (S3C-Latent) to obtain a causal model between the relevant caregiver family load factors. The results of modeling analysis showed that there are 3 factors </span>which<span lang="IN"> have a causal relationship and 2 factors have an association relationship. Gender has a stable causal relationship to health readiness and readiness to care</span>, Moreover, t<span lang="IN">he caring readiness factor affects the family caregiver activity factor, </span>and the <span lang="IN">financial factor </span>has <span lang="IN">a strong association with the activity factor and family relationships. This causal modeling can be used as a reference for health workers so as to give health services which are precise, efficient, and effective in dealing with caregiver burden problems.</span></em></p>

scholarly journals Predictors of Depressive Symptoms among Family Caregivers of Patients with Dementia in Java, Indonesia

2021 ◽  
Vol 73 (8) ◽  
pp. 549-558
Author(s):  
Yossie Susanti Eka Putri ◽  
Yajai Sitthimongkol ◽  
Virapun Wirojratana ◽  
Natkamol Chansatitporn
Keyword(s):  
Social Support ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Mental Health Problems ◽  
Psychological Symptoms ◽  
Healthcare Services ◽  
Cross Sectional ◽  
The Family ◽  
The Relationship

Objective: Depressive symptoms are common mental health problems among the family caregivers of patients with dementia. However, little is known about the prevalence of depressive symptoms among the family caregivers of patients with dementia in Indonesia. This study aimed to examine: 1) the factors predicting depressive symptoms, 2) the mediating role of social support in the relationship between burden and depressive symptoms, and 3) the association between depressive symptoms and healthcare utilization among family caregivers.Materials and Methods: This was a cross-sectional study involving 250 family caregivers of patients with dementia recruited from four hospitals in Java, Indonesia. Data were collected by Zarit Burden Interview (ZBI); the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Mastery scale, the Multidimensional Scale of Perceived Social Support, and the Center for Epidemiologic Studies Depression (CES-D) Scale. Descriptive statistics, chi-square test, hierarchical multiple linear regression, and Baron and Kenny's regression method were used to analyze the data.Results: The results revealed that about a quarter of the participants (24.8%) experienced depressive symptoms. Caregiver burden, mastery, behavioral and psychological symptoms of dementia, and social support explained 45.5% of the variance in the prevalence of depressive symptoms among family caregivers (R2=0.455). Social support also partially mediated the association between caregiver burden and depressive symptoms. There was no association between depressive symptoms and the use of healthcare services among the family caregivers.Conclusion: The findings revealed that social support is a mediating factor affecting the relationship between caregiver burden and depressive symptoms. Interventions targeting social support to help alleviate caregiver burden would be effective in helping reduce depressive symptoms in the family caregivers of patients with dementia.

scholarly journals Beban pengasuahan Caregiver keluarga klien dengan Skizofrenia di Rumah Sakit Jiwa Naimata Kupang

2020 ◽  
Vol 11 (2) ◽  
pp. 183
Author(s):  
A. Nenobais ◽  
Ah. Yusuf ◽  
S.R.D Andayani
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Mental Hospital ◽  
Descriptive Study ◽  
Important Indicator ◽  
Zarit Burden Interview ◽  
It Impacts ◽  
The Family ◽  
Family Caregiver Burden

The primary caregiver of schizophrenia patients is a family member. Caring for schizophrenia patients with other routine activities makes the family as caregivers experiences substantive stress or burden. The aims of this study is to describe the burden of the family caregivers of patiens with schizophrenia. This study was a descriptive study with a sample of 104 family nurse patients with schizophrenia, who visited the outpatient and inpatient care of Naimata Mental Hospital in Kupang, East Nusa Tenggara. The burden of family caregivers was measured using The Zarit Burden Interview. The results showed mild to moderate burden was 23.1%, moderate to severe burden 49%, severe burden 22.1% and little or no burden 5.8%. Family caregiver burden is an important indicator for the provision of mental health services because it impacts on the ability of families to maintain their caregiving role. Keywords: family; caregiver; burden; schizophrenia ABSTRAK Pengasuh utama pasien Skizofrenia adalah anggota keluarga. Merawat pasien skizofrenia dengan kegiatan rutin lainnya menjadikan keluarga sebagai pengasuh mengalami stres atau beban yang substansial. Tujuan dari penelitian ini adalah untuk menggambarkan beban pengasuh keluarga pasien skizofrenia. Penelitian ini adalah penelitian deskriptis dengan sampel penelitian 104 perawat keluarga pasien dengan skizofrenia, yang berkunjung di rawat jalan dan rawat inap Rumah Sakit Jiwa Naimata di Kupang Nusa Tenggara Timur. Beban pengasuh keluarga diukur menggunakan The Zarit Burden Interview. Hasil penelitian menunjukkan beban ringan sampai sedang adalah 23,1%, beban sedang hingga berat 49%, beban berat 22,1% dan sedikit atau tidak ada beban 5,8%. Beban pengasuh keluarga merupakan indikator penting untuk penyediaan layanan kesehatan mental karena berdampak pada kemampuan keluarga untuk mempertahankan peran pengasuhan mereka. Kata kunci: keluarga; caregiver; beban; skizofrenia

The Role and Influence of Prostate Cancer Caregivers Across the Care Continuum

2018 ◽  
Vol 20 (3) ◽  
pp. 436-444 ◽  
Author(s):  
Esther Piervil ◽  
Folakemi Odedina ◽  
Mary Ellen Young
Keyword(s):  
Prostate Cancer ◽  
Family Caregivers ◽  
Black Men ◽  
Family Caregiver ◽  
Family Members ◽  
Qualitative Interview ◽  
Future Research ◽  
Care Continuum ◽  
The Family

Background. Black men endure a disproportionate burden of morbidity and mortality related to prostate cancer (CaP). Increasingly family members are assuming the role of providing care and support to family members with chronic disease. Understanding the role and influence of the caregiver is a necessary part of developing resources to assist individuals learning to provide care. Aim. The analysis aimed to explore CaP survivors’ perceptions of the role and influence of family caregivers to better understand existing opportunities for improving experiences and outcomes for both the caregiver and the care receiver. Design. Secondary analysis of qualitative interview transcripts. Data were analyzed to explore new inquiries related to CaP survivors’ perceptions of family caregivers’ role and influence at each stage of care. Content analysis was used to group data into established categories. Data Source. Data included qualitative interview transcripts with 32 CaP survivors from the Florida Prostate Cancer Care and Survivorship Project. Results. The role of the family caregiver is complex. Caregivers in this community seem to have a significant influence on behavior modification and cues to action for Black men with prostate cancer. According to the men in this group, caregivers functioned as normalizing agents, coordinating care and creating a new normal, throughout the various stages of care and survivorship. Conclusions. Findings inform areas for future research to develop culturally tailored health promotion programs designed to improve outcomes and address the needs of both the family caregiver and the care receiver across the care continuum.

scholarly journals Association Between Family Caregiver Burden and Affiliate Stigma in the Families of People with Dementia

2020 ◽  
Vol 17 (8) ◽  
pp. 2772 ◽  
Author(s):  
Jian-An Su ◽  
Chih-Cheng Chang
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Affiliate Stigma ◽  
People With Dementia ◽  
The Family ◽  
Male Caregivers ◽  
Family Caregiver Burden

Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma.

Managing Caregiver Burden among Families of Patients with End-Stage Renal Disease

2019 ◽  
Vol 21 (1) ◽  
Author(s):  
Yemisi Okikiade Oyegbile ◽  
Petra Brysiewicz
Keyword(s):  
Renal Disease ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
End Stage Renal Disease ◽  
Qualitative Data ◽  
Government Support ◽  
Implementation Phase ◽  
The Family ◽  
Stage Renal Disease ◽  
End Stage

Family caregivers of patients with end-stage renal disease (ESRD) play a significant role in providing substantial care for a prolonged period for their sick relatives, often with very limited resources, making it a difficult environment. Government support for family caregivers of patients with ESRD is lacking in Nigeria, increasing their vulnerability to caregiver burden and its consequences. An action research study using a complimentary mixed-method approach was used to develop the intervention model for managing caregiver burden. Quantitative data were collected to measure the extent of caregiver burden using a Zarit Burden Interview questionnaire for 96 family caregivers, while individual in-depth interviews with 15 participants provided the qualitative data. Integrating the quantitative and qualitative data led to the identification of four moderators to manage the caregiver burden in this study. The model for managing caregiver burden was developed from the findings, using stressors and associated moderators of caregiving, and the role played by culture and finance in this context. An implementation checklist was developed, which was used by registered nurses to implement the concepts in the model with the family caregivers during the model implementation phase. Family caregivers of patients with ESRD need to be supported by nurses during the caregiving process. Nurses can increase caregivers’ identity and knowledge of the disease as a way of preventing the family caregivers from being overwhelmed by their caregiving role.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

2017 ◽  
Vol 30 (3) ◽  
pp. 375-384 ◽  
Author(s):  
Ching-Lin Wang ◽  
Li-Min Kuo ◽  
Yi-Chen Chiu ◽  
Hsiu-Li Huang ◽  
Huei-Ling Huang ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Healthcare Providers ◽  
Theory Approach ◽  
Face To Face ◽  
The Family ◽  
The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

Exploratory and Confirmatory Factor Analysis of the Burden Scale for Family Caregivers-Short Form

2021 ◽  
pp. 106648072110524
Author(s):  
Rachel R. Tambling ◽  
Carissa D’Aniello ◽  
Beth S. Russell
Keyword(s):  
Factor Analysis ◽  
Confirmatory Factor Analysis ◽  
Family Caregivers ◽  
Exploratory Factor Analysis ◽  
Caregiver Burden ◽  
Short Form ◽  
Research Attention ◽  
Caregiving Burden ◽  
Confirmatory Factor ◽  
Burden Scale

Caregiver burden describes the physical, psychological, social, and financial demands of providing care to others. Caregiver burden has been investigated in general, and off-time caregiving often specific to chronic, recurring conditions. Despite the substantial research attention to caregiving burden, there have been few studies aimed establishing the psychometric evaluation of measurement tools used to measure the construct ( Pendergrass et al., 2018 ). Accurate measurement of caregiving burden is essential for studying the myriad effects on caregivers’ mental, physical, financial, and relational health. To begin to fill this gap, we conducted an exploratory factor analysis and a confirmatory factor analysis of the Burden Scale for Family Caregivers ( Pendergrass et al., 2018 ) in two distinct samples. Results of an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) indicated a one factor solution. Implications for these findings on the study of caregiver burden are included.

scholarly journals Family caregiver support—a facilitator to empower family caregivers

2021 ◽  
Vol 31 (Supplement_2) ◽  
Author(s):  
Sílvia Fernandes ◽  
Paula Portugal ◽  
Lhara Mullins ◽  
Martin Power ◽  
Marina Letica-Crepulja ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Information ◽  
Social Care ◽  
Emotional Health ◽  
Family Members ◽  
Mobile App ◽  
Caregiver Support ◽  
Support Strategies ◽  
Health Disorders

Abstract Background Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project ‘Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers’ emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver’s empowerment. Some issues were identified to add to Resource Pack. Conclusions Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project’s outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers.

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