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Perceptions of the care received from Australian palliative care services: A caregiver perspective
- Tanya M. Pidgeon, Claire E. Johnson, Leanne Lester, David Currow, Patsy Yates, Samuel F. Allingham, Sonia Bird, Kathy Eagar
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- Journal:
- Palliative & Supportive Care / Volume 16 / Issue 2 / April 2018
- Published online by Cambridge University Press:
- 30 March 2017, pp. 198-208
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Background:
Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.
Objective:Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.
Method:Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.
Results:Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).
Significance of Results:While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.
Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center
- SHIRLEY S. HWANG, VICTOR T. CHANG, YVETTE ALEJANDRO, PAMELA OSENENKO, CASAUNDRA DAVIS, JANET COGSWELL, SHANTHI SRINIVAS, BASIL KASIMIS
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- Journal:
- Palliative & Supportive Care / Volume 1 / Issue 4 / December 2003
- Published online by Cambridge University Press:
- 01 December 2003, pp. 319-329
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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.