William Collinge, PhD, MPH, LCSW, is president of Collinge and Associates, an independent research and consulting organization funded by NIH and other sources to develop innovative approaches to benefiting public health, including the Touch, Caring and Cancer program. Current projects focus on the use of evidence-based complementary therapies in palliative care (NCI), and a web-based intervention for Iraq/Afghanistan veterans and their partners using complementary therapies to promote wellness at home (NIMH). Website: www.collinge.org.
Questions & Answers
Our evaluation was based on families having their own copy of the video and manual to use at home, with the recommendation they practice 3 to 4 times per week. However, it may be that group instruction in a workshop, without having the materials to review at home, could be effective as well. We did a small study at National Cancer Hospital in Hanoi using the Vietnamese language video with groups of dyads in workshops, then sent them home with only the manual, and their patients had similar improvements in symptom ratings to the US sample. We plan to publish those data soon.
Since the focus is on comfort and relaxation rather than “treatment” per se, the methods may be used by families with other palliative care populations where comfort and relaxation are desired outcomes. Also, the program’s Precautions Checklist includes many medical issues that are shared by people with other illnesses besides cancer.
The biggest facilitator is easy access to the instruction. Online access at home is now available through streaming video and downloading the manual as an e-book. This is a great improvement over having to depend on hard copies or circulating a limited number through a resource library. Now an organization’s entire population can access the program online at home, or through streaming in hospital rooms.
For underserved and minority families, choice of language is another important facilitator. The program is available in English, Spanish, Mandarin, Cantonese and Vietnamese.
Direct encouragement by professionals is very helpful. This can be one-on-one, or through group viewings in support groups and workshops, where people can learn and practice together. Group programs help to reinforce an organization’s commitment to caregiver education and positive attitudes toward caregiving at home.
Reliance on a limited number of hard copies for lending or viewing in an organization’s resource library. This is overcome by the new online delivery option.
Another challenge is when staff just hand the program to caregivers without being familiar with it themselves. It’s best if they are familiar enough to convey confidence in a caregiver’s ability to use the program.
The three main areas to evaluate are (1) caregiver self-efficacy, (2) frequency of use at home, and (3) change in patient symptom levels after caregiver-delivered massage. These are all easily evaluated with very brief instruments, which I’m happy to share. We use a few caregiver attitude self-rating questions, along with “session cards” where patients record symptom levels before and after a session. We have these in English, Chinese, Spanish and Vietnamese.
We are currently in Phase II of an NCI-funded project to develop an online CE/CME program for multidisciplinary health care providers on evidence-based use of integrative therapies in palliative care settings. We are also in Phase II of an NIA-funded project to develop a multimedia education program for African American caregivers facing end-of-life treatment decisions for loved ones with dementia.