Wanting to Participate? Findings from a Study in New York’s HIV Clinics

ReValuing Care contributor Bob Hudson recently wrote about the potential of neighborhood support groups to foster community caregiving. I would like to build upon this by offering a description of findings from an ethnographic project by the New York State Department of Health AIDS Institute conducted between 2010-2011.  In this study, 45 patients and many of their providers from three HIV-specialty healthcare centers were  asked about what “quality care” meant for them.  Patients were interviewed multiple times over a 12 month period, and they were also accompanied through primary care visits to understand how service delivery processes shaped their views.

Findings from the study built on the notion of participation in unexpected ways and included the following key ideas:

1)    Patients used familiar language to talk about “quality,” but adapted such vocabulary in unique, creative, and personal ways based on their healthcare experiences.

2)    They expressed understanding the ‘behind the scenes’ factors affecting healthcare, such as cost and staffing issues.  Patients also framed quality care as activities that they were able to carry out on behalf of the healthcare organization and the work of its staff alongside these factors.

3)    Participation was not only described, but also enacted at the clinic’s service delivery level.  Patients participated in the daily running of the clinic in a variety of ways. A few common forms included taking on administrative responsibilities, providing emotional support, and offering feedback.  Participation was positive and negative, active and passive, solicited and unsolicited. All types impacted delivery goals.

Our research shows that some healthcare consumers have strong ideas about what they want in their care, and they are willing to ‘co-produce’ services to improve the likelihood of successful and satisfying healthcare.  In so doing, they go beyond weighing in through satisfaction surveys to offer hands-on involvement.  Healthcare designers who recognize and harness such tendencies may lower costs, improve management efficiencies, foster positive relationships, and influence health outcomes.  Insights are useful in chronic health management contexts, but there are applications for short term care as well as in other public sector arenas.  The challenge is to build such systems in equitable, inclusive, and respectful ways that does not dictate participation, but offers conditions for it to flourish.

If you would like more information about the study, please contact me at abigail.baimlance@gmail.com.


Leave a Reply