Activity Participation for Adolescents and Young Adults with Spinal - - PowerPoint PPT Presentation
Activity Participation for Adolescents and Young Adults with Spinal Cord Injuries: A Critical Rehabilitation Outcome Carol Haywood, PhD, OTR/L Postdoctoral Fellow, Health Services and Outcomes Research Northwestern University, Feinberg School
Carol Haywood, PhD, OTR/L Postdoctoral Fellow, Health Services and Outcomes Research Northwestern University, Feinberg School of Medicine Carol.Haywood@northwestern.edu @cehaywood
Chan Division of Occupational Science and Occupational Therapy:
– Mary Lawlor, ScD, OTR/L, FAOTA (Chair) – Natalie Leland, PhD, OTR/L, BCG, FAOTA, FGSA – Elizabeth Pyatak, PhD, OTR/L, CDE – Benjamin Henwood, PhD
– Patient-Centered Outcomes Research Institute (PCORI), Pipeline-to-Proposal, Tier I Award (contract #3414629) – California Foundation for Occupational Therapy Research Grant – Society for the Study of Occupation Student Research Grant – Current Fellowship at Northwestern University: NIDILRR (grant #H133P130013, PI: Allen Heinemann, PhD)
– Relates to development of skills, meaning in life – Influences identity, possibility, hope – Supports learning
– Motor, sensory, autonomic functions → chronic disability – Sense of self, roles, and participation
– Relatively rare, but with significant lifetime costs – Nearly 40% aged 14-25 years at time of injury
– Differentiate from family, emphasis on peer relationships – Transitions in education, career, marital status
– Onset of chronic conditions – High rates of mental health problems
– Movement towards specific research and practice guidelines for AYAs, including in occupational therapy
Summer 2015: Recruitment
from local rehab hospitals and community orgs
nominate a “primary” caregiver (physical, emotional, financial support)
Aug 2015: Began Phase I Data Collection
N=17 Each participant completed:
Jan 2016: Phase I Complete
Analyzed data to identify:
could provide richer data relating to daily life and participation → Invited to enroll in Phase II
Dec 2016: Phase II Complete July 2016: Began Phase II Data Collection
N=6 Each participant completed:
Interviews
Observation
– Researcher reflections on potential sources of bias (reflexivity; researcher = data collection tool) – Triangulation
Injury Information n or mean
Time Since Injury (months) 20.2 (SD±19.3) Level of Injury: C1 – 4 1 C5 – 8 4 T1 – S5 4 Complete Injury 7 Incomplete Injury 2 Mechanism of Injury: Sport 2 Fall 1 Medical 1 Violence (gunshot) 5
General Demographics n or mean
Age (years) 19.3 (SD±1.7) Gender: Male 7 Female 2 Race/Ethnicity: White 2 Black 2 Latino 3 Asian 1 Not stated 1 Living with Caregiver: Full-Time 6 Part-Time 1 No 2
– Formal or organized (e.g., school, work) – Informal/unstructured, often social or leisure – Ordinary (e.g., brushing teeth, eating, drinking) – Singular events (e.g., marriage, graduation)
– Leisure, academic, and vocational opportunities – Largely focused on friends and romantic interests
– Require substantial, specialized health care – Spend more time with caregivers – Spend more time on specific aspects of self-care
– Increased commitment of time and energy – Loss of spontaneity – Conflicted with participation in other activities
AYA: [The routine to get ready is] the biggest thing, you know, people are like, when you're making plans [or] whatever, you've got a 10:00 class, [they’re] not going to shower, so [they] wake up at 9:50 and run to class. I'm up at 7:15 just so I can get there and not smell.
AYA: This year [was] supposed to be graduating year for me, but nope, I'm still in the ninth grade. My situation- it keeps me back from a lot of stuff. If something happens, I got to stay home. I have [bladder and bowel] accidents at school, stuff like that… It would never be a day where I could just be at school all day... There's always something happening… My mom's talking about home studies… I don't know, I just don't want to feel like I'm just caved in somewhere all day… I'd rather just go to school, do what I have to do, and still be with friends and communicating with others… I was never a home person… Now that I'm in a wheelchair, it's like I'm home all day.
– Pre-SCI: 2 of 9 – Post-SCI: Different 2 of 9
– More than 3 years post-SCI – Associated with career preparation (internships) – Positions gained through personal relationships, volunteering
“informal economies”
– e.g., breeding and selling puppies, exchanging off- market tech devices for money/goods, and other illicit sales or “street” (gang) practices, including gaining power by force
– Lack of interest – Changed abilities
pre-SCI appeared to negatively impact efforts to coordinate care and engage in community post-SCI
– e.g., difficulty understanding and completing paperwork for financial benefits, housing, and scheduling health care
AYA: Before this, I was just thinking money, and not the right way… I'm trying to better myself from now... So, why not go to school?… I know I could become something successful… So, why not go to school instead of sitting around like I was doing? I wasn't sitting around, but I wasn't doing any good, so I wouldn't want to go back to that. So, I'm trying to move forward, go to school, become something. I can't say what I want to become yet, but something successful and that pays good. AYA: They make everything so difficult for you when you try to do it the right way.
– Self-care conflicted with other activities, interests
– AYAs with limited formal education or employment experience pre- SCI may require unique supports, approach to rehabilitation
– Should be evaluated critically alongside functional status
– Should be evaluated with developmental framework (i.e., what is appropriate for age)
carol.haywood@northwestern.edu
@cehaywood