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 of Medicine Carol.Haywood@northwestern.edu @cehaywood
Acknowledgements and Funding • Study Participants • Dissertation Committee at the University of Southern California, 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 • Funding: – 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)
Participation • Definition: Involvement in activity • Significance: – Relates to development of skills, meaning in life – Influences identity, possibility, hope – Supports learning • Facilitated by exposure and graded support
Spinal Cord Injuries (SCIs) • Impacts: – Motor, sensory, autonomic functions → chronic disability – Sense of self, roles, and participation • Common reliance on caregivers post-SCI • Annual incidence = 17,500 in US – Relatively rare, but with significant lifetime costs – Nearly 40% aged 14-25 years at time of injury
Adolescents and Young Adults (AYAs) • Significant cognitive, behavioral, and social changes – Differentiate from family, emphasis on peer relationships – Transitions in education, career, marital status • Numerous risks to health and well-being – Onset of chronic conditions – High rates of mental health problems • Critical considerations for health care – Movement towards specific research and practice guidelines for AYAs, including in occupational therapy
Research Objective: Understand and describe day-to-day experiences of AYAs with SCIs and their caregivers in home and community life. Meanings of participation and its significance for AYAs with SCIs.
Study Design and Methods • Narrative and phenomenological approach • Multiple perspectives (AYAs, caregivers) to understand lived experiences
Research Timeline, Activities July 2016: Aug 2015: Summer Jan 2016: Began Dec 2016: Began 2015: Phase I Phase II Phase II Phase I Data Recruitment Complete Data Complete Collection Collection N=17 N=6 • Purposive sampling Analyzed data to from local rehab identify: Each participant hospitals and • Preliminary themes Each participant completed: completed: community orgs • Participants who • 1 Narrative Interview • Asked AYAs to could provide richer • 1-4 Narrative • 2 Group Interviews Interviews nominate a “primary” data relating to daily • AYAs only: 1 Activity caregiver (physical, life and participation emotional, financial → Invited to enroll Observation support) in Phase II
Data Analysis • Narrative, thematic, and categorical coding with NVivo 11 • Within- and across-case analyses • Strategies for Rigor: – Researcher reflections on potential sources of bias (reflexivity; researcher = data collection tool) – Triangulation
Results • Description of AYA Participants • General Overview of Findings re: Participation • Challenges to Participation Self-Care - Experience -
AYA Participants (n=9) General Demographics n or mean Injury Information n or mean 19.3 (SD ± 1.7) Age (years) 20.2 (SD ± 19.3) Time Since Injury (months) Gender: Level of Injury: Male 7 C1 – 4 1 Female 2 C5 – 8 4 Race/Ethnicity: T1 – S5 4 White 2 Complete Injury 7 Black 2 Incomplete Injury 2 Latino 3 Mechanism of Injury: Asian 1 Sport 2 Not stated 1 Fall 1 Living with Caregiver: Medical 1 Full-Time 6 Violence (gunshot) 5 Part-Time 1 No 2
Description of Participation • Wide range of activities in day-to-day life – 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)
Patterns of Activity Participation • Typical to AYAs: – Leisure, academic, and vocational opportunities – Largely focused on friends and romantic interests • Atypical to AYAs: – Require substantial, specialized health care – Spend more time with caregivers – Spend more time on specific aspects of self-care
Challenge to Participation: Self-Care • Pervasive demands 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.
Self-Care: Disruption to School, Social Participation 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.
Challenge to Participation: Experience Employment Education
Formal Employment Experience • Only 4 of 9 had any formal employment experience – Pre-SCI: 2 of 9 – Post-SCI: Different 2 of 9 • Factors relating to post-SCI employment: – More than 3 years post-SCI – Associated with career preparation (internships) – Positions gained through personal relationships, volunteering
Informal Economies • All AYAs injured by gunshot reported experience in “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 • Post-SCI: Difficulty re-engaging with these activities – Lack of interest – Changed abilities
Importance of Formal Experience • Lack of formal employment experience or success in school 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.
Summary • Wide variations in types and intensities of activity participation across individual cases • SCIs disrupt activity participation that is crucial to AYA development – Self-care conflicted with other activities, interests • Important links between experiences pre-SCI and activity participation post-SCI
Implications • Experiences pre- and post-SCI may have long-term implications on health, well-being, and productivity – AYAs with limited formal education or employment experience pre- SCI may require unique supports, approach to rehabilitation • Few opportunities for formal, productive roles in society • Skills and experiences from informal economies are often overlooked • Activity participation should be an essential patient reported outcome in value-based rehabilitation – Should be evaluated critically alongside functional status • Function ≠ performance or participation – Should be evaluated with developmental framework (i.e., what is appropriate for age)
Next Steps • Tools to capture activity participation • Interagency coordination: How are medical rehabilitation programs working with department of rehabilitation and education systems for long-term support in communities?
Thank you! @cehaywood carol.haywood@northwestern.edu
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