[Show abstract][Hide abstract] ABSTRACT: The purpose of this article is to stimulate discussion and research about patient suffering and caregiver compassion. It is our view that these constructs are central to understanding phenomena such as family caregiving, and that recognizing their unique role in the caregiving experience provides new directions for intervention research, clinical practices, and social policy. We first define and characterize these constructs, review empirical evidence supporting the distinct role of suffering and compassion in the context of caregiving, and then present a conceptual model linking patient suffering with caregiver compassion. We conclude with a discussion of implications and future directions for clinical intervention, research, and policy.
The Gerontologist 03/2007; 47(1):4-13. · 2.48 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Finding better ways to support family caregivers is a major public health challenge.
To test the effects of a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in 3 diverse racial or ethnic groups.
Randomized, controlled trial.
In-home caregivers in 5 U.S. cities.
212 Hispanic or Latino, 219 white or Caucasian, and 211 black or African-American caregivers and their care recipients with Alzheimer disease or related disorders.
Caregivers within each racial or ethnic group were randomly assigned to an intervention or to a control group. The intervention addressed caregiver depression, burden, self-care, and social support and care recipient problem behaviors through 12 in-home and telephone sessions over 6 months. Caregivers in the control group received 2 brief "check-in" telephone calls during the 6-month intervention.
The primary outcome was a quality-of-life indicator comprising measures of 6-month caregiver depression, burden, self-care, and social support and care recipient problem behaviors. Secondary outcomes were caregiver clinical depression and institutional placement of the care recipient at 6 months.
Hispanic or Latino and white or Caucasian caregivers in the intervention group experienced significantly greater improvement in quality of life than those in the control group (P < 0.001 and P = 0.037, respectively). Black or African-American spouse caregivers also improved significantly more (P = 0.003). Prevalence of clinical depression was lower among caregivers in the intervention group (12.6% vs. 22.7%; P = 0.001). There were no statistically significant differences in institutionalization at 6 months.
The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into a single group, and excluded some ethnic groups.
A structured multicomponent intervention adapted to individual risk profiles can increase the quality of life of ethnically diverse dementia caregivers. ClinicalTrials.gov identifier: NCT00177489.
Annals of internal medicine 11/2006; 145(10):727-38. · 16.10 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Recruitment is often the most challenging aspect of research with older persons. Social marketing--applying marketing techniques to influence the behavior of target audiences to improve their welfare--can help researchers identify factors that influence recruitment.
Illustrations of social marketing principles are provided from the Resources for Enhancing Alzheimer's Caregiver Health project, a national Alzheimer's caregivers study that targeted ethnic and racial minorities.
Social marketing principles--the six Ps of participants, product, price, place, promotion, and partners--provide a theoretical framework for organizing and planning recruitment activities, including developing varying strategies to define the target audience (participants), develop the intervention (product), manage time and trouble (price), target the audience, improve accessibility (place), promote the study, and develop and work with partners.
Strategies to enhance recruitment are often undertaken without a comprehensive plan. A social marketing plan provides a framework to map out the steps in recruitment that will be needed and to plan for allocations of time, staff, and resources.
Journal of Aging and Health 12/2004; 16(5 Suppl):157S-76S. · 1.56 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This article reviews and critiques several issues of importance to those whose goal is to make intervention research with Latino caregivers more "user-friendly." Issues range from current demographic trends showing the ever-increasing number of Latino caregivers to discussion of cultural values that influence their help-seeking behavior.
This article presents a review of current published information on this topic. The gerontological literature was searched for the past decade for relevant material; in addition, the authors' own experience in this area is described.
Although limited information was found that derived from actual empirical studies, a number of articles describe potential barriers to research involvement and provide suggestions for making participation more attractive and culturally appropriate for Latinos.
Clinical researchers need to increase their sensitivity to such issues as cultural values and language preference and develop effective collaborations with the Latino community so that intervention research programs can be designed and implemented successfully with Latinos caring for cognitively impaired elderly family members at home.
The Gerontologist 03/2003; 43(1):45-51. · 2.48 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: We reviewed intervention studies that reported dementia caregiver outcomes published since 1996, including psychosocial interventions for caregivers and environmental and pharmacological interventions for care recipients. Our goal was to focus on issues of clinical significance in caregiver intervention research in order to move the field toward a greater emphasis on achieving reliable and clinically meaningful outcomes.
MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health databases from 1996 through 2001 were searched to identify articles and book chapters mapping to two medical subject headings: caregivers and either dementia or Alzheimer's disease. Articles were evaluated on two dimensions, outcomes in four domains thought to be important to the individual or society and the magnitude of reported effects for these outcomes in order to determine if they were large enough to be clinically meaningful.
Although many studies have reported small to moderate statistically significant effects on a broad range of outcomes, only a small proportion of these studies achieved clinically meaningful outcomes. Nevertheless, caregiving intervention studies have increasingly shown promise of affecting important public health outcomes in areas such as service utilization, including delayed institutionalization; psychiatric symptomatology, including the successful treatment of major and minor depression; and providing services that are highly valued by caregivers.
Assessment of clinical significance in addition to statistical significance is needed in this research area. Specific recommendations on design, measurement, and conceptual issues are made to enhance the clinical significance of future research.
The Gerontologist 11/2002; 42(5):589-602. · 2.48 Impact Factor