Jennifer Chernega, PhD, Winona State University
Jay Palmer, PhD, Winona State University
In August 2010, faculty and emeriti from Winona State University in Winona, MN met to form an applied research group, intent on serving the needs of non-profit organizations in Southeast Minnesota. That fall, the newly formed Action Research Center of Southeast Minnesota met with New Horizons an organization that provides support services and housing to intellectually disabled adults.
During these meetings, New Horizons identified staff-guardian relationships as a key concern. New Horizons has consistently received positive feedback about its services from clients (consumers), family members and legal guardians, but some staff were worried that family members and legal guardians may not want to complain about New Horizons services because they feared retribution on their loved ones. They wanted to know if family members and legal guardians had any unvoiced concerns. Also, knowing more about the relationship between consumers’ legal guardians and the New Horizons staff could help the organization improve those relationships, improve consumer experiences and reduce stress on staff. In order to gather data about these important relationships, ARCSEM conducted six focus groups (two each with legal guardians, staff and consumers). New Horizons staff recommended guardians, staff and consumers for the focus groups. Because of this, participation was skewed toward highly involved stakeholders. Each focus group had between 6 and 16 members and lasted approximately 90 minutes. ARCSEM staff guided the focus groups with open ended questions, but also allowed topics to emerge as participants brought them up. The focus groups were then transcribed and coded. As a community-based action research project, ARCSEM staff and New Horizons staff met several times during the focus group development, data collection and analysis phases. These meetings helped ARCSEM keep the research relevant to the organization’s needs and primary concerns while also allowing the organization to initiate change during the process of the project.
While New Horizons’ original fears appeared unfounded (no one mentioned withholding criticism for fear of retribution) the focus groups did reveal interesting points of tension in the relationships between staff and legal guardians. For example, New Horizons’ focus on consumer autonomy sometimes put staff in an awkward position of negotiating between consumer wishes and guardian demands. For instance, one staff member said that they encourage residential consumers to pick out their own clothes, and sometimes that means that consumers will pick out unique outfits or clothes that are well-worn, but guardians sometimes demand that consumers wear certain things or are dressed in certain ways. Medical decisions are another place where staff felt trapped between guardian wishes and, in this case, doctor’s orders. We suggested that explicit, clear written expectations could help alleviate some of these tensions and take pressure off of staff.
Consumers’ parents expressed that it could be difficult to watch their adult, intellectually disabled children be cared for by someone else, and also watch them establish their own lives independent from their parents. This could be exacerbated by staff who seemed to lack emotional boundaries with consumers. For example, some staff (especially some younger, new staff members) talked about how they knew more about the consumers than their parents did or that they were as emotionally connected to the consumer as their parents were. Training for staff around boundaries and providing support groups for parents could help families and staff negotiate this emotional territory.
One unique aspect of this project was the extent to which we could work with New Horizons’ consumers. It is New Horizons’ philosophy, and that of much of the field that serves people with developmental disabilities, that the consumers’ voices be front and center in any discussion regarding their lives. As researchers, we supported this position and held two focus groups with agency consumers. Facilitating these groups and analyzing their content provided unique challenges and insights. The challenges came in the form of a range of cognitive skills and communication styles. These made for very diverse discussions (sometimes simultaneously in the same group). We quickly discovered that we needed to flex our interview schedule to respond to the way the participants understood and interpreted the questions. For example, when we asked participants to describe their relationships with their guardians, they responded by talking about bowling, boyfriends/girlfriends, and where they like to go for dinner. From the participants’ point of view, this discussion accurately reflected how they experienced their relationships with their guardians. Seeing these complex relationships from the point of view of the agency consumers provided insight into how they respond to both agency staff and their guardians.
Two of the consumer focus group members who made important contributions to their groups had considerable communication barriers to overcome. One participant with Cerebral Palsy had many things that he wanted to express. Speaking was a very labor and time intensive endeavor for him. Another participant with Autism communicated through the use of a board where he spelled out words. This participant was very articulate but required the assistance of a staff person to verbally state what he spelled. Accommodating their communication needs required considerable flexibility from the group facilitators but also offered valuable insight into the role that communication barriers play in the various relationships we explored.
On October 27th, we presented our findings to New Horizons’ leadership board during their annual strategic planning retreat. We hope to continue working with New Horizons on a second phase of data collection in which we reach out to guardians who have not been as involved or communicative with New Horizons to learn more about their barriers to involvement.
The researchers involved in this project included Professor Emeritus John Collins, sociology students Anne Janey and Amanda Fenske, Social Work Assistant Professor Jay Palmer and Sociology Assistant Professor Jennifer Chernega, all of Winona State University.