Purpose
We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized cancer patients.
Methods
We recruited adult patients in oncology units and their informal caregivers. We utilized a two-armed, randomized controlled trial design with data collected at baseline, post-training, and at 2 and 4 weeks after hospital discharge. Primary outcomes were self-efficacy for managing patients' cancer symptoms and caregiver stress, and preparedness for caregiving. Secondary outcomes were caregiver depression, anxiety, and burden. The education comparison (EDUC) group received information about community resources. We used general linear models to test for differences in the Enhanced-CT relative to the EDUC group.
Results
We consented and randomized 138 dyads: Enhanced-CT = 68 and EDUC = 70. The Enhanced-CT group had a greater increase in caregiver self-efficacy for cancer symptom management and stress management, and preparation for caregiving at the post-training assessment compared to the EDUC group but not at 2 and 4-week post-discharge assessments. There were no intervention group differences in depression, anxiety, and burden.
Conclusion
An Enhanced-CT protocol resulted in short-term improvements in self-efficacy for managing patients' cancer symptoms and caregiver stress, and preparedness for caregiving but not in caregivers' psychological well-being. The lack of sustained effects may be related to the single-dose nature of our intervention and the changing needs of informal caregivers after hospital discharge.
This article is based on ethnographic research that explored experiences of suffering in late life. From a group of 60 oldest-old (age 80 and above) male participants, four were primary, at-home caregivers for wives with dementia. Men's narratives showed the inter-relation between masculinities, a sense of personal control, and experiences of suffering within caregiving. Three thematic “tools” of control emerged as strategies men used to mediate their suffering: 1) the power of the little; 2) preserving self-identity and marriage-identity and, 3) finding purpose in the role of caregiver. We offer insight into the world of the oldest-old male caregiver through men's accounts of suffering, their daily tasks, thoughts about themselves as caregivers, and the manner in which they embody their masculinity in caregiving.
After a decade of changes in federal law, regulation, and policy designed to
promote the growth of publicly funded participant-directed long-term services and supports
(PD-LTSS) programs, the number of these programs has grown considerably. The National
Resource Center for Participant-Directed Services (NRCPDS) at Boston College started
developing an inventory of these programs in 2010-2011 to determine the number and
characteristics of publicly funded PD- LTSS programs in the United States. The 2010-2011
NRCPDS inventory provides baseline data for future research efforts in gauging the growth
and expansion of this service delivery model. This article details the process for
developing this data resource, some of the major characteristics of PD-LTSS programs in
the United States, and discusses possible implications and areas for future research.
These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.
The positive results of the Cash & Counseling Demonstration and
Evaluation (CCDE) led to the funding of a replication project that included 12
more states in 2008. Since then, the political and economic environments have
changed. The authors sought to investigate how well the three original and 12
replication CCDE programs are coping with current challenges, and how their
experiences may inform the growth and sustainability of emerging
participant-directed programs. Semistructured telephone interviews were
conducted with the 15 Cash & Counseling state program administrators. Key
topics addressed included: successful aspects of state programs, biggest
challenges for each program, and information program administrators would like
to learn from state colleagues. Themes related to budget issues (e.g., staff
shortages and program funding cuts) and non-budget related issues (e.g.,
understanding of program operations) emerged from the interviews. State program
administrators also discussed program successes. To promote the sustainability
and growth of participant-directed programs, existing participant-directed
programs should be tied to national policy trends as well as review whether or
not the programs address participant-directed principles. The development of new
participant-directed programs should be based on other states’
experiences as discussed in this paper.
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