Project
Qualitative Research Involving Holistic, Community-Based Interventions for Individuals with Fetal Alcohol Spectrum Disorder, Interdisciplinary Ph.D. Research Barriers to Implementing Holistic, Community-Based Treatment for Offenders with Fetal Alcohol Conditions, LL.M. Thesis, completed Oct., 2003., and new research in this area to be continued in Ph.D. (e.g. Charter concerns)
Principal Investigator(s): Rae Mitten, phone: 306-966-6200, email: hrm752@mail.usask.ca
Publications: "Fetal Alcohol Spectrum Disorder and the Justice System, "June 21, 2004, Volume II, Final Report, Submissions to the Commission on First Nations and Métis Peoples and Justice Reform http://wwww.justicereformcomm.sk.ca/volume2.gov (Section 9).
Start/End Date: January 2004 to January 2010
Location: University of Saskatchewan
Brief Description: Through the vehicle of qualitative methodologies, the researcher proposes a comprehensive examination of effective policy and practice for individuals with FASD. The proposed study is original and significant due to the extent and magnitude of the problem of FASD, including its personal, social and economic costs. For lack of accommodation of their primary and secondary disabilities, vulnerable individuals with FASD may eventually end up, by default, in the criminal justice system. Here, in addition to suffering a loss of liberty due primarily to cognitive and behavioral impairments, FASD individuals also deteriorate as they become subject to harsh penal consequences, negative peer environments, and victimization. A comprehensive, systematic undertaking to address and mandate treatment needs of FASD individuals in order to maintain them in the community has not been attempted previously. Moreover, Charter guarantees with potential to provide protection against unwarranted loss of life, liberty, and security of the person, together with positive mandating of access to accommodation of disabilities, in addition to alternative means of legal redress and policy reform, will be examined.
The focus of the field work component is on the qualitative, participatory analysis of holistic, community-based, interdisciplinary treatment and interventions for individuals with fetal alcohol spectrum disorder. Qualitative methodologies will be utilized, the criterion of analysis of these being whether interventions promote a holistic approach to health care that is efficacious in the treatment of FASD. As individuals with FASD are disproportionately prevalent among Aboriginal peoples, the Aboriginal perspective (including holistic health) is integral to any treatment program. Holistic treatment, consonant with the Aboriginal perspective of the Medicine Wheel, includes integrated treatment of mind, body, emotions and spiritual components. Research methodologies consistent with Aboriginal values of respect, empowerment and community consultation, including principles of equity and reciprocity, will be followed (Tri-Council Policy, Section 6, Research Involving Aboriginal People; Indigenous Peoples Health Research Centre Ethics Proposal, 2004). It is important that Aboriginal participants involved in the research be given voice, rather than remaining invisible, disempowered, and objectified behind the plethora of statistics, laboratory procedures and standardized tests (albeit validated primarily on non-Aboriginal peoples) traditionally employed in scientific research.
The researcher will design and use an open-ended interview protocol with FASD participants, caregivers, and service providers to determine if holistic health care needs for individuals with FASD are being effectively addressed. Overarching research questions that frame the study include: (a) In what aspects is the treatment or practice community-based and holistic in nature? (b) How does the treatment or practice address the mind, body, spirit and emotional components? (c) How are symptoms linked with the knowledge base of health medicine regarding FASD and then with ameliorative programming and practice? (d) What are evidence-based indicators of the efficacy of each treatment or practice component? (e) Are primary and secondary characteristics attenuated by each treatment or practice component? (f) What are the policy implications of treatment or practice components utilized?
Techniques will be developed for use in the interviews with FASD participants. Due to their cognitive problems including memory gaps which they may compensate for by confabulation if pressed, and a related need for increased response time, as well as distractibility, inability to relate one question meaningfully to another, eagerness to please and a corresponding tendency to acquiesce, a special interviewing approach is required. In addition, trust relationships must be developed as FASD participants often respond poorly to authoritarian settings where they may not understand the rules and the positions of those in authority, and may have faced negative experiences in such contexts. Several interviews, maximum of one to two hours, will be used with each participant. These interviews will be audiotaped with the consent of the interviewees. Audiotaped interviews will be transcribed, and then returned to the interviewees for verification or editing.
Such edited transcripts will be analyzed inductively by the researcher to identify patterns and themes arising from the raw data. While the Atlas-ti computer software program facilitates this analysis, the judgment of the researcher with knowledge in the area of FASD and related needs is critical in coding and identifying themes from the raw interview data. These codes and themes are grouped into global themes by the researcher, with the aid of the memory, storage, and manipulative functions of the software. As a result, a grounded theory of effective policy and practice for dealing with FASD individuals gradually emerges.
From the inside perspective of affected individuals, their families, and service providers, in depth, detailed, rich information needed to address specialized, therapeutic changes in case management and programming emerges. Such inductive study is deemed most appropriate for cross-cultural work, where the researcher does not want to be restricted to imposing a mainstream world view, in terms of a theory to be tested deductively, upon a frequently marginalized, oppressed, and silenced group.
Time Frame: ongoing
Type of Project: research
Population Served: urban, suburban, rural, and aboriginal, global component
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