Pediatrics, the official journal of the American Academy of Pediatrics recently published an article in it’s electronic edition that would be of interest to you all. It comes out of Boston University, and, since it was published in the electronic edition, can be accessed here Titled "You Get What You Get": Unexpected Findings About Low-Income Parents'”, the authors write about their analysis of a series of audiotaped interviews collected over a 5 year period in which low-income parents were asked to reflect on their life experience. The authors were surprised to find that parents had strongly held opinions regarding their interactions with community-based organizations. To quote the authors, they found that:
(1) "engaging with services sometimes meant subjecting oneself to requirements perceived as unnecessary and, in the extreme, having to adopt the value systems of others;
(2) accepting services was sometimes perceived as a loss of control over one’s surroundings, which, in turn, was associated with feelings of sadness, helplessness, or stress;
(3) individuals staffing community agencies were sometimes seen as judgmental or intrusive, and when many services were accessed concurrently, information
sometimes became overbearing or a source of additional stress; and
(4) some services or advice received as part of such services were perceived as unhelpful because they were too generic or formulaic.”
As one who works in the community, this feels about right. Conflicting world views, judgement, loss of control and poor quality services are complaints that I here from all of my patients who need to confront the system, whether it is an insurance company or a school system. The difference is that many of those with money are able to do something to increase their control over the situation. So what does this imbalance of power mean to those of us trying to work with underserved populations?
1) Listen. A lot. When you think that you have heard enough, listen some more. We need to really understand where our patients/client are coming from in order to know what services they need and to offset their feeling of being shuffled through a system that is not grounded in their reality.
2) Stay in touch. When you send someone off to another agency, you asking them to take a leap of faith. Be there to help them through the sense of loss of control.
3) Lend them your strength. Empowerment is sometimes a cliché, yet the value of knowing that someone has your back is immeasurable.
4) Bend when possible. One size of service will not fit all, and you need to adapt to the person in front of you in order to help them.
We all knew this already, but this is a nice piece of qualitative research that suggests why being patient/client centered is so important.