Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study

2020 ◽  
Vol 18 (5) ◽  
pp. 519-527
Author(s):  
Erin E. Kent ◽  
Michelle A. Mollica ◽  
J. Nicholas Dionne-Odom ◽  
Rebecca A. Ferrer ◽  
Roxanne E. Jensen ◽  
...  
Keyword(s):  
Supportive Care ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Short Form ◽  
Care Recipient ◽  
Instrumental Support ◽  
Caregiver Distress ◽  
Sampling Weights ◽  
Serious Illness ◽  
Nationally Representative

AbstractBackground and ObjectiveA priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.MethodWe analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.ResultsOur analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3–63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.ConclusionsPoor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

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.

Caregivers of Older Persons in Jamaica: Characteristics, Burden, and Associated Factors

2020 ◽  
pp. 073346481989831
Author(s):  
Kenneth James ◽  
Camelia Thompson ◽  
Desmalee Holder-Nevins ◽  
Douladel Willie-Tyndale ◽  
Julian McKoy-Davis ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Associated Factors ◽  
Older Persons ◽  
Cross Sectional Study ◽  
Community Dwelling ◽  
Care Recipient ◽  
Cross Sectional ◽  
Single Person ◽  
Nationally Representative ◽  
Structured Questionnaire

Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.

scholarly journals Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries?

2018 ◽  
Vol 34 (3) ◽  
pp. 148-152 ◽  
Author(s):  
Uwe Konerding ◽  
Tom Bowen ◽  
Paul Forte ◽  
Eleftheria Karampli ◽  
Tomi Malmström ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Survey Data ◽  
Informal Care ◽  
Caregiver Burden ◽  
Short Form ◽  
Physical Problems ◽  
Special Support ◽  
Burden Scale ◽  
Person With Dementia

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

Health-Related Quality of Life and Caregiver Burden among Peritoneal Dialysis Patients and Their Family Caregivers in Japan

2003 ◽  
Vol 23 (2_suppl) ◽  
pp. 200-205 ◽  
Author(s):  
Setsuko Shimoyama ◽  
Orie Hirakawa ◽  
Keiko Yahiro ◽  
Toshimi Mizumachi ◽  
Andrea Schreiner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Peritoneal Dialysis ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Short Form ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Objective Recent studies have found that patients with chronic renal failure suffer from depression and other symptoms of decreased mental health. However, little is know about caregiver burden and mental health among patients’ families. In the present study, we examined the relationship in Japan between peritoneal dialysis (PD) patients and caregivers with regard to health-related quality of life (HRQOL) and caregiver burden. Method In March of 2002, we recruited 60 subjects—26 patients on continuous ambulatory peritoneal dialysis (CAPD), and 34 caregivers—from a PD patient support group in southern Japan. We used the Kidney Disease Quality of Life Short Form (KDQOL-SF) and the Medical Outcomes Study Short Form 36 (SF-36) to measure HRQOL. We used the Zarit Burden Interview (ZBI) to measure caregiver burden. Data was also collected on each patient's duration of illness, treatment modality, age, sex, and medical history. All data were collected by mail surveys. Results Mean age of the PD patients was 48.2; mean age of the caregivers was 46.6. Mean caregiver burden on the ZBI was 14.1, which is considerably lower than that reported among caregivers for patients with dementia or stroke. Caregivers and patients both rated their general health and vitality among the lowest of the eight dimensions on the KDQOL-SF. In addition, patients scored lower than a normative population in all dimensions and significantly lower than caregivers in the dimensions of role physical functioning, role emotional functioning, and social functioning. Compared to national normative data for their age group, caregivers scored substantially lower in general health, vitality, and mental health. Conclusions Patients on CAPD are at risk for social role dysfunction, and their caregivers are at risk for decreased mental health. Further research is needed to identify interventions that can improve the HRQOL of CAPD patients and their family caregivers.

scholarly journals Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA

2019 ◽  
Vol 34 (6) ◽  
pp. 376-380
Author(s):  
Cory K. Chen ◽  
Nicole Nehrig ◽  
Karen S. Abraham ◽  
Binhuan Wang ◽  
Amy P. Palfrey ◽  
...  
Keyword(s):  
Social Support ◽  
Emotion Regulation ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Behavioral Intervention ◽  
Care Recipient ◽  
Care Recipients ◽  
Attachment Quality ◽  
Affective Instability ◽  
Symptom Remission

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA.

scholarly journals Level of Burden and Health-Related Quality of Life in Caregivers of Palliative Care Patients

2019 ◽  
Vol 16 (23) ◽  
pp. 4806 ◽  
Author(s):  
Perpiñá-Galvañ ◽  
Orts-Beneito ◽  
Fernández-Alcántara ◽  
García-Sanjuán ◽  
García-Caro ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Short Form ◽  
Depression Scale ◽  
Anxiety And Depression ◽  
Cross Sectional ◽  
Post Traumatic Growth ◽  
Post Traumatic ◽  
Primary Family

The complexity of palliative care means that the emotional distress and burden that primary family caregivers suffer under can be particularly high. The objective of this study was to determine the level of burden endured by these primary family caregivers and to identify the variables that predict it in the caregiving relatives of people who require home-based palliative care. A descriptive-correlational cross-sectional study was conducted. Socio-demographic and clinical data were collected from caregivers through a self-administered questionnaire that included questions from the 12-Item Short Form Health Survey (SF-12), Zarit Caregiver Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Brief Resilient Coping Scale (BRCS), Post Traumatic Growth Inventory (PTGI), and Fatigue Assessment Scale (FAS). A total of 77 caregivers participated; 66.2% were women, and the mean age was 61.5 years. Most (62.3%) were providing care to cancer patients. From among these data, the presence of anxiety as a clinical problem (48.1%), a high average fatigue score (FAS) of 23.0 (SD = 8.5), and the prevalence of intense overload (41.6%) stood out. We found statistically significant correlations between the variables of burden, fatigue, post-traumatic growth, anxiety, and depression, with the latter two being the main predictive variables of burden. In addition, caregiver burden was associated with a worsening of health. Identifying the factors that influence the appearance of overburden will allow the specific needs of careers to be assessed in order to offer them emotional support within the healthcare environment.

scholarly journals Caregiver burden and associated factors amongst carers of women with advanced breast cancer attending a radiation oncology clinic in Nigeria

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Ikechi E. Jite ◽  
Adedotun A. Adetunji ◽  
Ayorinde M. Folasire ◽  
Joshua O. Akinyemi ◽  
Segun Bello
Keyword(s):  
Breast Cancer ◽  
Advanced Breast Cancer ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Radiation Oncology ◽  
Associated Factors ◽  
Demographic Data ◽  
Advanced Breast ◽  
Sub Saharan Africa ◽  
Care Recipient

Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria.Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer.Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria.Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained.Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78).Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role.

Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients

2018 ◽  
Vol 17 (03) ◽  
pp. 294-299 ◽  
Author(s):  
Roberta Spatuzzi ◽  
Maria Velia Giulietti ◽  
Marcello Ricciuti ◽  
Fabiana Merico ◽  
Paolo Fabbietti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Short Form ◽  
Well Being ◽  
Medical Outcomes ◽  
Spiritual Well Being ◽  
Outcomes Study

AbstractObjectiveThe spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease.MethodThis is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.ResultThe high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p &lt; 0.001), social activities (p = 0.001), mental health (p &lt; 0.001), and in standardized mental component subscales (p &lt; 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).Significance of resultsThis study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

scholarly journals Typologies of Dementia Caregiver Support Networks: A Pilot Study

2021 ◽  
Author(s):  
Esther M Friedman ◽  
David Kennedy
Keyword(s):  
Family Caregivers ◽  
Support Networks ◽  
Care Recipient ◽  
Support Network ◽  
Personal Network ◽  
Large Networks ◽  
Caregiver Support ◽  
Dementia Caregiver ◽  
Nationally Representative ◽  
The U.S

Abstract Background and Objectives There are nearly 18 million family caregivers in the U.S. assisting an older adult in need of help. To identify the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWD) in the U.S. age 18 and over, including information on network members’ support to the caregiver and help to the care recipient. Results We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerable among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

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