What Happens When They Become Disabled: An Examination of Adolescent Development While Living With Muscular Dystrophy

Using interpretative phenomenological analysis (IPA), a qualitative research method, combined with quantitative data, this study was designed to examine what it means to be an adolescent living with muscular dystrophy, a life-limiting disease. A sample of twelve adolescents with Duchenne (eight), limb-girdle (two), and friedreich's ataxia (two) as subsets of muscular dystrophy were interviewed one-on-one, as were their parent or adult guardian. Interviews consisted of 16 opened-ended questions for adolescents, and 17 open-ended questions for parents or guardians. Participants also completed a pre-interview online survey consisting of 38 closed-ended questions using a Likert-type scale to gather demographic and treatment information. The focus of these interviews included peer relationships, self-concepts, and family dynamics in the lives of adolescents with muscular dystrophy. Each of these categories was examined in relation to participants' processes of making meaning of their experiences. It was discovered that parent and child attitudes towards disability run parallel, whether that be positive, negative, or neutral in regards to quality of life with a disability. It was also determined that at least one parent must be a stay-at-home job or be able to work from home in order to be the caliber of caregiver required for their child. Adolescents in this study all had a strong support system in place, with the predominant support system being their family. Self-reports on whether or not adolescents worried about how their muscular dystrophy affected their families were split. Families planned activities within their family unit by utilizing a complete activity inclusion approach, separate opportunities for siblings approach, or activity elimination approach. Regardless of level of family support, it was found that the majority of adolescents in this sample try not to think about muscular dystrophy, or have neutral feelings towards these thoughts. They also thought that people who do not have muscular dystrophy do not know what it is like to live with this disease, and felt neutrally towards the way that they look. Medically speaking, the majority of adolescents reported feeling neutral towards the support that they receive from their medical providers, and that their providers do not talk directly to them but rather to the rest of their family or caregiver instead. These adolescents could not manage their own medical needs and their medical appointments were made by a parent or other type of caregiver. A strong misperception that a physical disability also signals the presence of an intellectual disability when at school was evident. Adolescents were also quick to point out the social stigma that comes with having the assistance of an aid at school with able-bodied peers. However, a small few, particularly those younger in age, reported a lack of peer stigma, and even the social benefit of having an adult friend at school. While the Muscular Dystrophy Association is trusted in coordinating patient care, their treatment advisements are perceived to be outdated, and Goodwill Ambassador program considered manipulative by patients. Application to the Muscular Dystrophy Association (MDA) Transitions Program are named so that the organization formerly relied upon most to serve these families and who has a program designed to serve this exact population can benefit from them. With zero families interviewed having heard of or utilized this program, a clear change in their programs and practices need to take place. The information gathered from this study provides insight for developing and to guide new programs to assist this population in making the difference the MDA Transitions Program aims to do.