Recent Research Publications and Funding

 The concept of palliative care originally evolved from the hospice philosophy of meeting gaps in care for seriously ill and dying patients. The Latin word palliate means “conceal or alleviate symptoms without curing” (Romesburg, 2007). The earliest recording of the word palliate can be traced to the late 14th century, where it originated in Elizabethan and Indo-European traditions (Morris, 1998). In 1967, Dame Cicely Saunders founded the first modern hospice program in the United Kingdom, which emphasized the importance of compassion and medical science (Georges, Grypdonck, & Dierckx de Casterle, 2002). Florence Wald, Dean of Yale University, invited Saunders to the U.S. to learn about her experiences, and in 1974, she founded the first home hospice program based in New Haven, Connecticut. In 1975, St. Luke’s Hospice in New York was the first hospice in the U.S. incorporated into an existing medical center. In 1982, the first children’s hospice center opened in England (Foster, 2007). Despite growth in hospice initiatives, researchers have only just begun to explore the unique aspects of pediatric palliative care.

Palliative care was first introduced in 1990 by the World Health Organization (WHO) (2004) and is currently defined as “an approach to care which improves quality of life of patients and their families facing life-threatening illness through prevention, assessment, and treatment of pain and other physical, psychological, and spiritual problems.” WHO (2004) further describes palliative care for children as the active total care of the child’s body, mind, and spirit, as well as a means of providing support to the family.

To provide this type of palliative care today, hospitals throughout the U.S. have increased initiatives to meet the unique needs of both adults and children. Although there are some commonalities, pediatric palliative care differs from adult palliative care in several ways that preclude the extension of existing adult services into the pediatric world (Sumner, 2003).

 Objective: To describe a process for developing low-literacy health education materials that increase knowledge and activate patients toward healthier behaviors.

Methods: We developed a theoretically informed process for developing educational materials. This process included convening a multidisciplinary creative team, soliciting stakeholder input, identifying key concepts to be communicated, mapping concepts to a behavioral theory, creating a supporting behavioral intervention. One half of American adults lack the literacy and numeracy skills necessary to effectively obtain, process, and act on the information in most patient education materials, recognition, designing and refining materials, and assessing efficacy.

Results: We describe the use of this process to develop a diabetes self-management guide.

Conclusions: Developing low-literacy health education materials that will activate patients toward healthier behaviors requires attention to factors beyond reading level.  

 Objective

Evaluate satisfaction with visit preparation at three rural resource center sites.

Methods

The resource centers sent eight employees and two volunteers for training at UCSF in Consultation Planning (CP). CP is a service to help patients make a list of questions before seeing their doctors. Researchers used multivariate ordered logistic regression analysis to investigate the variation in satisfaction among 99 CP Clients served by the resource centers in 2003.

Results

Sixty-seven CP Clients who completed surveys were highly satisfied (mean=8.67, standard deviation (S.D.)=1.85, range=5–10). Variation in satisfaction was associated only with whether or not the CP Provider was a breast cancer survivor serving a breast patient (p=0.005). Satisfaction was not associated with CP Client demographics; type of upcoming medical visit; or CP Provider age, remuneration status, nursing background, and volume of CP Clients.

Conclusion

Community-based resource centers have implemented CP to the satisfaction of their clients. Further research should expand the delivery of CP to more underserved members of the community and evaluate its acceptability and impact. There may be a therapeutic alliance formed when survivors provide CP to newly diagnosed patients.

Practice implications

CP should be considered by patient support programs wishing to expand their client services to include visit preparation.

This article evaluates the use of handheld computers for systematic observation of the social and physical environments. Handheld computers, also known as personal digital assistants (PDAs), make the advantages of computer-assisted data collection (CADC) more accessible to field-based researchers. In particular, CADC with handheld computers may improve data quality, reduce turnaround time, and enhance research capacity for community-academic partnerships. Here, we describe our experiences using handheld computers for the Healthy Environments Partnership's Neighborhood Observational Checklist, an instrument for systematic observation of the social and physical environments. We discuss hardware and software considerations, observer training and implementation strategies, and observer attitudes toward using handhelds in the field. We conclude that handheld computers are a feasible alternative to pen-and-paper forms, and we identify ways that future researchers can maximize the advantages of CADC with handheld computers to advance our understanding of how neighborhood context relates to individual-level outcomes.