Hi Kathy,
I’m in Boston today to do a talk for the ESRD Network Patient Services Coordinators, so this will be quick, and I may post something longer later. In terms of chronic disease self-management, the “guru” in the filed is Dr. Kate Lorig at Stanford. If you look in PubMed (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi) for Lorig K, you’ll find a lot of references that are very helpful.
These days, the Medical Education Institute has been looking into the Ryan and Deci “Self-determination theory” (SDT). This is an empirically generated theory (that is, every piece of it is based on published research findings) that holds that all adults have three critical psychological needs that must be met for them to develop (think Maslow’s heirarchy of needs…), and their environments can help or hinder this development. Those three critical needs are:
– Competence (this is a VERY similar concept to self-efficacy)
– Autonomy (the need to feel as if one generates one’s own actions)
– Relatedness (interconnection with others)
Clearly, the in-center hemo environment does a good job of fostering relatedness, by putting together a lot of folks who are in the same boat. But I would argue that in-center hemo does a very POOR job of supporting people’s feelings of competence (unless there is in-center self-care) or autonomy. This is where home dialysis can really shine. If you put “Self determination theory” into Google, you can find the Ryan and Deci website, which has lots of downloadable pdf articles that should serve as useful background. There was a fascinating SDT-based article about diabetes care that led me to the theory in the first place–it found that diabetics who felt that their care team supported their autonomy had significantly lower A1c’s.