A qualitative inquiry into the experience of persons with chronic and delimiting psychiatric disabilities.
Michael O’Loughlin Ph.D., Adelphi University
Secil Arac-Orhun, Ph.D.
Montana Queler, Ph.D. , William Alanson White Institute
Marilyn Charles, Ph.D., ABPP, Austen Riggs Center
Jay Crosby Ph.D., Bellevue Hospital
and team members from Fountain House, NYC
Field work start date: Spring 2012.
Project completion: The project will be completed by December 2018, with the anticipated publication of a book, Lives interrupted: An analysis of life narratives of persons with chronic psychiatric struggles , edited by Michael O’Loughlin, Secial Arac-Orhun, and Montana Queler, and with contributions by all team members. The book is contracted to Lexington Books. Lanham, MD.
Funding source: Fountain House
THE FOUNTAIN HOUSE PROJECT
Life History Conversations Project
This project represents a collaboration between Fountain House staff and members and a team of researchers directed by Michael O’Loughlin from Adelphi University and Marilyn Charles from Austen Riggs Center. The collaborative elements of the project are described below.
After initial agreement to the research plan by Fountain House (FH), and approval by FH research committee and Adelphi IRB, it was agreed that the first stage of the project would be for the research team to establish a presence at FH. Secil Arac has been volunteering in the Horticulture Unit since June 2012, under the supervision of Elliott Madison. Montana Queler, who had previously interned at FH, has been similarly volunteering since September 2012. Michael O’Loughlin has had to delay his entry to the site, but he hopes to begin volunteering with the Horticulture Unit in January 2013 as a step toward becoming active in the research process. The volunteering has not only allowed Secil and Montana to build rapport with the members and staff but it has been invaluable in helping us to tailor the conversation protocols sensitively to the FH context.
Life History Conversations: The idea
In addition to our initial conceptualization of the research process based on the prior work we have done at Austen Riggs Center, we have now “softened” the interviews with a greater focus on life history and narrative, and a reduced focus on clinical parameters. Work by sociologists Arthur Kleinman and Daniel Frank on illness narratives has been influential in our thinking about how to help persons with chronic conditions to take stock of their life experiences. Our interests is in understanding the ways in which FH members understand the path their life has taken; how they have incorporated psychiatric difficulty into their life plans; and the functions FH and other institutions play in their evolving life plans and sense of selves.
Life History Conversations: The plan
Following the ideas of medical anthropologist Ellen Corin, we are interested in a “contemplative immersion” in each participant’s life, and we are interested in exploring what Corin calls “the restorative dynamics” that allow a person to potentially pursue, most likely with the assistance of facilitative resources such as FH, a path of healing and fulfillment to the extent possible.
We are planning a three-hour conversation, conducted as three separate one-hour sessions. While a suggested order of topics is presented here, it is important to note that the meetings will take the form of conversations and if a particular participant chooses to follow a particular path we will follow the natural path of the conversation and catch up in a later meeting on any topics that may not have been addressed. A key priority is to privilege the narrative and life perspective of each participant.
In the first conversation we are particularly interested in what Arthur Frank calls “the wounded storyteller” narrative. We are interested in when the participant first experienced psychiatric difficulties; what effect that interruption had on their life plans; what the long-term effects of the psychiatric interruption was on the participant’s long term life plans; and the participant’s ability to revise the life plan and develop a new purposeful life plan subsequent to the interruption.
In the second conversation we are interested in understanding the matrix of familial, societal and inherited factors and stressors that may have either produced the initial psychiatric crisis or contributed to the difficulty the participant had in adapting to and mastering that crisis.
In the third conversation we hope to understand the support structures and services that have been facilitative for the participant, as well as the participant’s response to institutions and services that they found unhelpful. Here we have in mind psychiatric services, hospital in- and out-patient programs partial hospital programs, community and government agencies, as well as the services provided by the FH community.
A subtest of the conversations that will be explored when opportunity presents is the participant’s understanding of their psychiatric impairment; the degree to which they have internalized a colonizing psychiatric view of themselves; and their perception of themselves as stigmatized or not by the psychiatric diagnosis that has been ascribed to them. As Arthur Frank notes in The Wounded Storyteller: “The danger for ill people is that they are often taught how to be ill by professionals. Illness is not presented to the ill as a moral problem; people are not asked, after the shock of diagnosis has dulled sufficiently, what do you wish to become in this experience?”
All conversations will take place in a secluded location at FH. All will be audio-and video-recorded, if participants agree. Tapes will be transcribed immediately by Adelphi based research staff, subject to appropriate confidentiality restrictions as approved by FH and Adelphi IRB.
Description of collaborative component
Participants will have the option of having fellow members included or excluded from discussion of their conversations. Analysis will include a series of research team meetings at FH in which videotapes and transcripts will be shared and a discussion of the key narrative elements of a particular participant’s narrative will be discussed. In addition to the researchers already mentioned, Jay Crosby and Ally Merchant, graduates of Adelphi’s PhD program will also be involved. FH staff and FH members will join the research team on the recommendation of the FH research committee. Subsequent to a particular research meeting, the Adelphi team [and any interested FH members] will develop a draft that will be returned to the research team [and to the participant if they choose] for further validation. All products that emerge from this research will be developed and authored collaboratively and by agreement
We are conducting intensive training in January 2013 for Secil Arac and Montana Queler, who will conduct the initial interviews. We anticipate conducting the first ten conversations in the period January – May 2013. By agreement with FH, all participants will be paid $30 per session for participating in each of the three conversations.
We are deeply grateful for financial support from Fountain House for this project. Thank you!