Category: Spinal Cord Injury; Lifestyle Medicine
To examine personal and cultural factors that may differentially influence the way in which racially/ethnically diverse persons with spinal cord injury (SCI) engage in functional independence (i.e., self-care and mobility) activities.
A qualitative study using focus groups<./p>
Setting : Focus groups were conducted at Kessler Foundation.
Participants (or Animals, Specimens, Cadavers) :
A total of 15 participants participated in three focus groups (5 per group) that were stratified by race/ethnicity: Non-Hispanic White Non-Hispanic Black, and; Hispanic. Participants were men living with chronic SCI (duration of injury at least 2 years) who used a manual wheelchair as their primary means of mobility.
Interventions : No interventions.
Main Outcome Measure(s) :
Qualitative content analyses organized participants' responses into themes related to personal and cultural factors that facilitate or hinder the maintenance of their self-care and mobility activities.
Preliminary results indicate that all participants focused on functional activities and experiences immediately following their injury, during rehabilitation, after discharge and currently. Participants defined functional independence within the context of achieving functional gains in self-care and mobility activities within this timeframe. Personal factors (e.g., positive psychological adjustment and expectations) were key to initiating functional activities during their inpatient rehabilitation. Participants mentioned the value of peer mentoring and cultural factors, such as, being a part of the "wheelchair culture" as important to sustaining their functional independence as they adjusted to life with their families, homes and community. Discrimination was identified a key barrier to maintaining functional independence. Variability in the type of experiences (e.g., racial versus disability-related discrimination) and hardships that resulted from discrimination was reported across racial/ethnic groups.
The experiences of racially/ethnically diverse men living with an SCI in a manual wheelchair suggest that they struggle with some similar personal factors that impact their functional independence; however, cultural factors vary across racial/ethnic groups. Understanding participants' experiences is critical to the development of interventions to manage discrimination as well as culturally-relevant interventions that encourage functional independence across all racial/ethnic groups living with SCI.
Denise Fyffe– Senior Research Scientist, Kessler Foundation/Rutgers University, West Orange, New Jersey
Sharon Sonenblum– Senior Research Scientist, Georgia Institute of Technology, Atlanta, Georgia
Trevor Dyson-Hudson– Director, Spinal Cord Injury Research, Kessler Foundation, West Orange, New Jersey