Date Presented 03/26/20
Transition Age Youth with Epilepsy (TAYWE) struggle to gain the skills necessary to effectively manage self-care routines. A mobile health system may be an effective means of providing remote support and increasing self-management skills, while providing caregivers with the ability to monitor health status and activities. This presentation shares the qualitative results gathered via focus groups from both TAYWE and their caregivers to help design an innovative mHealth system to support their needs.
Primary Author and Speaker: Andrea Fairman
Additional Authors and Speakers: Alyssa Ojeda, Lindsey Morris, Rachel Goodwin
Contributing Authors: Mary Thompson
PURPOSE: Transition from youth to adulthood is a challenging time in one’s life, especially for persons managing chronic conditions, such as epilepsy. Difficulties in managing daily routines and self-care tasks, such as medication management and sleep schedules, can quickly lead to adverse health outcomes (Betz, 2004). For transition-age youth with epilepsy (TAYWE), adequate self-management skills are critical for health and well-being during this particularly vulnerable time between childhood and adulthood (Camfield, Camfield & Pohlmann-Eden, 2012). A mobile health (mHealth) system could be an effective means to help support self-management skills of TAYWE in conjunction with their caregivers and healthcare providers (Escoffery, et al., 2018). The objective of this study was to gather information about health-related, social, and emotional concerns of TAYWE and their caregivers as the first step in the user-centered design of an innovative mHealth system to help support self-management skills.
DESIGN / METHODS: This study employs qualitative methodology. Participants were recruited in conjunction with the New England Epilepsy Foundation. Focus groups were conducted to gather data from TAYWE and their caregivers, typically parents. Participants were grouped according to whether they were a caregiver or TAYWE. TAYWE were then further divided into two smaller groups reflective of their age and/or functional abilities. Slides were used as visuals to help provide a semi-structured format and guide discussion when examples of possible technologies aided in the participants’ understanding of how mHealth technologies may be able to address their needs. The focus group sessions were audio recorded and transcribed. Coding for thematic analysis of the transcripts was completed separately by research members and then reviewed for consensus to identify major and sub-themes.
RESULTS: A total of 22 participants provided input during three, separate 90-minute focus group sessions, including 15 TAYWE and seven caregivers. Ages of the TAYWE ranged from to 17-26 years, with a mean of 21.3 years. Gender was equally represented in our TAYWE participants with eight female and seven male participants. All but one of the caregivers was female, consistent with mothers frequently serving as primary caregivers. Thematic analysis produced seven major themes concerning issues such as: assistance with medication management, anxiety and stress, potential infringement on privacy, stigma, coordination of care, education, motivational factors, and the ease of use necessary in the design of an mHealth system to meet their needs.
CONCLUSION: TAYWE and their caregivers are very interested in using an mHealth system to help support and improve self-management skills. Not only must the system address the issues our stakeholders revealed, but participants also emphasized that it must also be highly flexible and customizable to meet a variety of personal preferences, levels of ability, and age ranges.
IMPACT STATEMENT: Design, testing and clinical implementation of such a mHealth system to increase self-management skills is an emerging area of research and clinical practice well suited for the input and guidance of occupational therapists to apply a holistic approach necessary for considering TAYWE’s unique patterns and needs.
References
Camfield, P., Camfield, C., Pohlmann-Eden, B. (2012). Transition from pediatric to adult epilepsy care: A difficult process marked by medical and social crisis. Epilepsy Currents;12(4), 13-21. [doi: 10.5698/1535-7511-12.4s.13]
Betz, C. (2004). Transition of adolescents with special health care needs: A review and analysis of the literature. Issues Comprehensive Pediatric Nursing;27(3):179-241. [doi: 10.1080/0146860490497903]
Escoffery, C., McGee, R., Bidwell, J., Sims, C., Kovich-Thropp, E., Frazier, C., Mynatt, E.D. (2018). A review of mobile apps for epilepsy self-management. Epilepsy & Behavior;81, 62-69. [doi: 10.1016/j.yebeh.2017.12.010]
