A Community Approach: Improving the Health and Wellness of People with Learning Disabilities
This piece was originally published in Inquiry Journal, an online, multi-disciplinary undergraduate research journal that features first-person accounts of undergraduate research done for a course or project under the direction of one or more faculty mentors. The following was written by Kristen Manning, who spent the summer of 2011 in Northern Ireland discovering new ideas and treatments for learning disabilities. Manning recently graduated with a degree in nursing.
Kristen Manning '12 (center) at the Chief Nursing Officer Conference 2011 with foreign research mentor, Dr. Owen Barr, (right) and Chief Nursing Officer of Northern Ireland, Martin Bradley (left).
A role model in my life has been my older sister who has Down syndrome. Through her, I have been exposed to persons with intellectual/learning disabilities, and greatly enjoyed forming relationships with this group of my peers. As I began my undergraduate career as a nursing student, I knew I wanted to continue working with adults with intellectual disabilities. However, I was surprised to learn that the United States currently lacks universal education for nurses in providing care for persons with intellectual disabilities (ID) while other countries, such as Northern Ireland, do provide that training. My desire and knowledge about such educational programs began to fuel the formation of a research project.
Globally, the number of persons with ID has expanded by 25 percent over the past ten years (Parrott, 2008). This has created an unprecedented level of need for health and social care that made me question what these persons think about their health, their access to health care and the nurses who help them. I specifically wanted to hear their voices. I then wanted to hear from the nurses who work with this population and how they perceive their roles. When I learned of the University of New Hampshire's International Research Opportunities Program (IROP) grants for summer research abroad, I teamed up with Associate Professor Joan Hahn of the Department of Nursing, who recruited a professional contact, Professor Owen Barr at the University of Ulster-Magee in Derry, to be my foreign mentor. Together we successfully applied for a grant, and I spent the summer of 2011 in Northern Ireland.
In 2007 the Bamford report indicated that the prevalence of persons with learning disabilities was 9.71 percent in Northern Ireland. The report was an independent review (2002–2007) that examined the law, policy and provisions affecting people with mental health needs or a learning disability. Learning disability is the term of choice in Northern Ireland for what Americans refer to as intellectual or developmental disability, previously known as mental retardation. By definition, learning disability may range from mild to profound, with an array of physical challenges, sensory impairments, and/or behavioral or mental health problems (WHO, 2009). According to the Bamford report, persons with learning disabilities have higher mortality rates, live with greater levels of ill-health, use primary care services less often and are less likely to take up health screening than the general population. And this occurs in a country with universal health care, free to every resident.
Arrival in Derry and My Research Plan
The CAN-CAN van, offering valuable employment training for people with learning disabilities.
When I arrived in my ancestral country of Northern Ireland, my new home for nine weeks, I was greeted with welcoming kindness as I simultaneously became aware of the political tension embedded in this country's culture and history. What fascinated me most importantly was the sense of community in the vibrant city of Derry. This was the beginning of a realization of how strong the role of the community can be in improving the health and wellness of the Northern Irish.
My project was a descriptive qualitative study consisting of two phases: phase one involved working with and interviewing persons with learning disabilities, and phase two involved interviewing and shadowing nurses (observing nurses in practice). Prior to beginning my research, Dr. Barr facilitated the opportunity for me to attend the Chief Nursing Officer's Conference, meet the Chief Nursing Officer of Northern Ireland, meet the Northern Ireland Advisor for the Department of Health, Social Services, and Public Safety, and begin to spend time with two groups of persons with learning disabilities.
The CAN-CAN van, offering valuable employment training for people with learning disabilities. The first group was a theater company, located in the community playhouse, whose members were passionate about and active in the performing arts. The second group was a user-led advocacy group that engaged in community service activities that provided both recreation and employment. Both groups' offices were located within walking distance of local shops and businesses. With both of these groups, I spent time developing rapport through their various activities including Zumba, photography classes, bowling, walks on Derry's historic walls, circus training, drumming circles and many more. This allowed me to see how actively persons with learning disabilities participated in their communities, from working to relaxing with friends in a local pub. Once we were acquainted, I then explained my research and asked for volunteers to be part of my research study. In total, I interviewed thirteen adults.
My interview techniques improved through self-reflection and discussions with my mentors, Drs. Barr and Hahn, as my confidence as a researcher built. What proved to be a significant benefit was developing rapport with the research participants in order to create a trusting relationship and get a grasp of their communication strengths and challenges. The more time I spent with each group, the more trust I developed between the participants and myself as the researcher.
Originally published by:
Inquiry, UNH Undergraduate Research Journal
Written by Kristen Manning (Editors: Elizabeth Barker and Jennifer Lee)