Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center

2003 ◽  
Vol 1 (4) ◽  
pp. 319-329 ◽  
Author(s):  
SHIRLEY S. HWANG ◽  
VICTOR T. CHANG ◽  
YVETTE ALEJANDRO ◽  
PAMELA OSENENKO ◽  
CASAUNDRA DAVIS ◽  
...  
Keyword(s):  
Social Support ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Caregiver Burden ◽  
Information Needs ◽  
Unmet Needs ◽  
Pearson Correlation ◽  
Family Satisfaction ◽  
Advanced Cancer Patients ◽  
Caregiver Satisfaction

Objectives: Caregiver outcomes among those caring for symptomatic advanced cancer patients at VA Medical Centers have not been well reported. The purposes of this study were (1) to identify the caregiver characteristics and their unmet needs; (2) to examine the association between caregiver unmet needs, caregiver burden, and caregiver satisfaction; and (3) to identify the independent predictors of different caregiver outcomes.Methods: One hundred caregivers completed three caregiver outcomes instruments: Family Inventory of Needs (FIN), Care Strain Index (CSI), and Family Satisfaction with Advanced Cancer Care (FAMCARE). The caregivers' demographics and their function, depression, health status, and social support status as well as the caregivers' perception of the patients' unmet needs (PPUN) were obtained. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. Pearson correlation and stepwise multivariate regression analyses were performed.Results: The median number of unmet needs was 2 and the median CSI score was 4. Most of unmet needs were related to information needs (needing more information related to home care, finding help with the problems at home, and disease prognosis) and symptom management. The majority of caregivers were satisfied or very satisfied by the care patients received. Spouse caregivers (N = 60, 60%) were significantly older (p = 0.006) with higher unemployment rates (p = 0.001), higher depression scores (p = 0.04), and lower social support scores (p < 0.0001) than nonspouse caregivers (N = 40, 40%). The PPUN predicted caregiver burden and the presence of caregiver unmet needs independently. The presence of caregiver unmet needs was the only independent predictor of caregiver satisfaction. Caregivers with a high PPUN and higher depression score experienced a higher burden.Significance of the research: The caregiver outcome model is proposed and needs to be further validated in a new cohort of caregivers.

scholarly journals Assessing unmet needs in advanced cancer patients: a systematic review of the development, content, and quality of available instruments

2021 ◽  
Author(s):  
Ben Rimmer ◽  
Lisa Crowe ◽  
Adam Todd ◽  
Linda Sharp
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Unmet Needs ◽  
Unmet Need ◽  
Measurement Properties ◽  
Psychosocial Needs ◽  
Measurement Instruments ◽  
Advanced Cancer Patients ◽  
Health Measurement ◽  
Care Needs

Abstract Purpose Advances in treatment, including biological and precision therapies, mean that more people are living with advanced cancer. Supportive care needs likely change across the cancer journey. We systematically identified instruments available to assess unmet needs of advanced cancer patients and evaluated their development, content, and quality. Methods Systematic searches of MEDLINE, CINAHL, Embase, PubMed, and PsycINFO were performed from inception to 11 January 2021. Independent reviewers screened for eligibility. Data was abstracted on instrument characteristics, development, and content. Quality appraisal included methodological and quality assessment, GRADE, feasibility, and interpretability, following consensus-based standards for the selection of health measurement instruments (COSMIN) guidelines. Results Thirty studies reporting 24 instruments were identified. These were developed for general palliative patients (n = 2 instruments), advanced cancer (n = 8), and cancer irrespective of stage (n = 14). None focused on patients using biological or precision therapies. The most common item generation and reduction techniques were amending an existing instrument (n = 11 instruments) and factor analysis (n = 8), respectively. All instruments mapped to ≥ 5 of 11 unmet need dimensions, with Problems and Needs in Palliative Care (PNPC) and Psychosocial Needs Inventory (PNI) covering all 11. No instrument reported all of the COSMIN measurement properties, and methodological quality was variable. Conclusions Many instruments are available to assess unmet needs in advanced cancer. There is extensive heterogeneity in their development, content, and quality. Implications for Cancer Survivors Given the growth of precision and biological therapies, research needs to explore how these instruments perform in capturing the needs of people using such therapies.

Perceived social support and coping strategies in advanced cancer patients

2011 ◽  
Vol 18 (5) ◽  
pp. 409-420 ◽  
Author(s):  
Adelaida Zabalegui ◽  
Esther Cabrera ◽  
Montserrat Navarro ◽  
María Isabel Cebria
Keyword(s):  
Social Support ◽  
Coping Strategies ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Perceived Social Support ◽  
Advanced Cancer Patients ◽  
And Coping

scholarly journals A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Tao Wang ◽  
Alex Molassiotis ◽  
Betty Pui Man Chung ◽  
Si-Lin Zheng ◽  
Hou-Qiang Huang ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Information Needs ◽  
Informal Caregivers ◽  
Structured Interviews ◽  
Advanced Cancer Patients ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Psychological Burden ◽  
Positive Effects

Abstract Background Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

Study on the Correlation between Caregiver Burden and Social Support of Low-Income Home-Based Patients with Advanced Cancer

2021 ◽  
Vol 7 (5) ◽  
pp. 1495-1502
Author(s):  
Ping LIU ◽  
Yan LIU
Keyword(s):  
Social Support ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Caregiver Burden ◽  
Low Income ◽  
General Information ◽  
Home Based ◽  
Close Relationship ◽  
Social Support Scale ◽  
Burden Scale

Objective To explore the correlation between caregiver burden and social support of low-income home-based patients with advanced cancer. Methods A self-made questionnaire was used to investigate 110 caregivers of low-income home-based patients with advanced cancer. The questionnaire included general information of patients and caregivers, Zarit Caregiver Burden Scale (ZBI), and social support scale, etc. The survey data were sorted out by Excel software and entered into the database, and the statistical analysis was completed with R3.5.2 software. The data of patients and caregivers were analyzed by frequency, rate, and means ± standard deviation (x±s). The correlation index was used to analyze the relationship between caregiver burden and social support. Results According to the investigation and analysis, the home-based caregivers of low-income cancer patients have a heavy burden. The ZBI score is (33.76 + 13.67) points, with a median of 33.0 points, which belongs to moderate and severe burden; the caregivers of low-income cancer patients received less social support, and the utilization of social support was low, with an average of (32.70 + 7.17) points and a median of 32.5 points, lower than the norm of (34.56 + 3.73) points. There was a negative correlation between caregiver burden and social support and each dimension (P; 0.001). Conclusion There is a close relationship between the burden of home-based caregivers and social support of low-income patients with advanced cancer. More attention should be paid to this group and more practical support and assistance should be provided to help reduce the pressure and burden of caregivers.

Family Caregiver Burden Among Advanced Cancer Patients: Findings from the CONNECT Trial (RP421)

2020 ◽  
Vol 60 (1) ◽  
pp. 226-227
Author(s):  
Wagahta Semere ◽  
Andrew Althouse ◽  
Douglas White ◽  
Robert Arnold ◽  
Thomas Smith ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Advanced Cancer Patients ◽  
Family Caregiver Burden
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