Date Presented 4/7/2016
This study investigated experiences of independence among young adults with chronic health conditions. Two main themes emerged from the data: facilitators and components of independence. Findings highlight the individuality of independence and its connection to roles, routines, and occupation.
Primary Author and Speaker: Sarah Hodges
Contributing Author: Emily Furgang Kertcher
RESEARCH QUESTION: The goal of occupational therapy services is most often to help the client reach his or her optimum level of independence; however, the construct of independence may differ from person to person. Therefore, my research question is “How do young adults with chronic illnesses who have made the transition from pediatric to adult health care experience independence?”
BACKGROUND: The importance of independence in the transition from pediatric to adult health care is a recurring theme in research, though little has been done to understand how it is experienced and defined by young adults with chronic health conditions. The purpose of this study was to investigate varied experiences of independence among this population.
DESIGN: This study was conducted using qualitative methodology and a phenomenological approach.
PARTICIPANTS: Four participants with chronic health conditions were recruited through convenience and snowball sampling. The participants ranged in age from 21 to 30 yr.
METHOD: Individual interviews were conducted with each participant. Interviews were semistructured, based on a questionnaire written by the researcher. All interviews were audio recorded for later analysis.
ANALYSIS: The researcher transcribed audio recordings of the interviews and then used open coding to highlight compelling statements. Patterns were then consolidated into themes and subthemes. Themes were compared across participants to identify similarities and differences.
RESULTS: Two main themes emerged from the data: facilitators of independence and components of independence. Facilitators of independence included subthemes of parents as teachers, establishing personal space, and establishing routines.
Establishing personal space was the most universal of these, with all 4 participants stating that moving away from home was, or would be in the future, a facilitator to establishing independence. Subthemes under components of independence were new roles, including added responsibility and taking control; time management; body function; and occupational balance. Three of 4 participants stated that they generally felt independent in their daily lives, and 1 stated that she felt a distinct lack of independence. There was increased overlap in themes between 2 participants who shared a diagnosis.
DISCUSSION: This study highlighted the multiple components of independence and how each individual experiences independence differently. Roles or responsibilities that signify independence for one individual may not be identified as such by another. Although these results indicate the individual nature of the construct of independence, the fact that there was increased overlap in themes between 2 participants who shared a diagnosis indicates that there may be similarities among people in a particular diagnostic category that can be used to guide the development of disease-specific tools to facilitate transition.
IMPACT STATEMENT: These findings highlight the fact that independence is an individual construct that is very strongly linked to roles, routines, and occupations. This study is an initial step in recognizing the unique contribution occupational therapy can make to health care transitions.
