Racial and Ethnic Differences in Obesity in People With Spinal Cord Injury: The Effects of Disadvantaged Neighborhood.

OBJECTIVE: To examine the role of neighborhood in the relation between race and obesity in people with spinal cord injury (SCI). DESIGN: A cross-sectional analysis of survey data from National SCI Database linked with neighborhood data from American Community Survey by census tract. SETTING: A total of 17 SCI Model Systems centers. PARTICIPANTS: Individuals (N=3385; 2251 non-Hispanic whites, 760 non-Hispanic blacks, 374 Hispanics) who completed a follow-up assessment during 2006-2017 (mean duration of injury, 8.3±9.9y) and resided in 2934 census tracts. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Body mass index (BMI) (kg/m2). RESULTS: The overall prevalence of obesity was 52.9% (BMI≥25.0) and 23.3% (BMI≥30.0). Hispanics were 67.0% more likely to be obese (BMI≥30.0 kg/m2) relative to non-Hispanic whites (odds ratio, 1.67; 95% confidence interval, 1.27-2.18), after controlling for demographic and injury-related characteristics. Most of the non-Hispanic blacks (66.8%) were living in neighborhoods with high concentrated disadvantaged index (CDI), compared to 35.0% of Hispanics and 9.2% of non-Hispanic whites living in this similar neighborhood status (P<.0001). After accounting for CDI, the odds of being obese in Hispanics decreased (odds ratio, 1.51; 95% confidence interval, 1.15-1.99). Regardless of race and ethnicity, people with SCI from disadvantaged neighborhoods were 42.0%-70.0% more likely to be obese than those from minimal CDI neighborhoods. CONCLUSIONS: Neighborhood characteristics partially diminish racial differences in obesity. Weight management for the SCI population should target those who are Hispanic and living in the disadvantaged neighborhoods.

Randomized Trial of a Peer-Led, Telephone-Based Empowerment Intervention for Persons With Chronic Spinal Cord Injury Improves Health Self-Management.

OBJECTIVE: To evaluate the impact of "My Care My Call" (MCMC), a peer-led, telephone-based health self-management intervention in adults with chronic spinal cord injury (SCI). DESIGN: Single-blinded randomized controlled trial. SETTING: General community. PARTICIPANTS: Convenience sample of adults with SCI (N=84; mean time post-SCI, 9.9y; mean age, 46y; 73.8% men; 44% with paraplegia; 58% white). INTERVENTIONS: Trained peer health coaches applied the person-centered health self-management intervention with 42 experimental subjects over 6 months on a tapered call schedule. The 42 control subjects received usual care. Both groups received the MCMC Resource Guide. MAIN OUTCOME MEASURES: Primary outcome-health self-management as measured by the Patient Activation Measure (PAM). Secondary outcomes-global ratings of service/resource use, health-related quality of life, and quality of primary care. RESULTS: Intervention participants averaged 12 calls over 6 months (averaging 21.8min each), with distinct variation. At 6 months, intervention participants reported a significantly greater change in PAM scores (6mo: estimate, 7.029; 95% confidence interval, .1018-13.956; P=.0468) compared with controls, with a trend toward significance at 4 months. At 6 months, intervention participants reported a significantly greater decrease in social/role activity limitations (estimate, -.443; P=.0389), greater life satisfaction (estimate, 1.0091; P=.0522), greater services/resources awareness (estimate, 1.678; P=.0253), greater overall service use (estimate, 1.069; P=.0240), and a greater number of services used (estimate, 1.542; P=.0077). Subgroups most impacted by MCMC on PAM change scores included the following: high social support, white persons, men, 1 to 6 years postinjury, and tetraplegic. CONCLUSIONS: This trial demonstrates that the MCMC peer-led, health self-management intervention achieved a positive impact on self-management to prevent secondary conditions in adults with SCI. These results warrant a larger, multisite trial of its efficacy and cost-effectiveness.

Empowering Adults With Chronic Spinal Cord Injury to Prevent Secondary Conditions.

OBJECTIVE: To develop and assess the feasibility of My Care My Call, an innovative peer-led, community-based telephone intervention for individuals with chronic spinal cord injury (SCI) using peer health coaches. DESIGN: Qualitative pilot study. SETTING: General community. PARTICIPANTS: Convenience sample of consumer advocates with traumatic SCI ≥1 year postinjury (N=7). INTERVENTIONS: My Care My Call applies a health empowerment approach for goal-setting support, education, and referral to empower consumers in managing their preventive health needs. For feasibility testing, peer health coaches, trained in brief action planning, called participants 6 times over 3 weeks. MAIN OUTCOME MEASURES: Identified focus areas were acceptability, demand, implementation, and practicality. Participant outcome data were collected through brief after-call surveys and qualitative exit interviews. Through a custom website, peer health coaches documented call attempts, content, and feedback. Analysis applied the constant comparative method. RESULTS: My Care My Call was highly feasible in each focus area for participants. Concerning acceptability, participants were highly satisfied, rating peer health coaches as very good or excellent in 80% of calls; felt My Care My Call was appropriate; and would continue use. Regarding demand, participants completed 88% of scheduled calls; reported that My Care My Call fills a real need; and would recommend it. Considering implementation, peer health coaches made 119% of expected calls, with a larger focus on compiling individualized resources. For practicality, call duration averaged 29 minutes, with 1 hour of additional time for peer health coaches. Participant effects included feeling supported, greater confidence toward goals, and greater connection to resources. Subsequently, several process changes enhanced peer health coach training and support through role-plays, regular support calls, and streamlined My Care My Call support materials. CONCLUSIONS: After process changes, a randomized controlled trial to evaluate My Care My Call is underway.

What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change.

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing. We transcribed and coded the responses to uncover salient themes. We uncovered 2 major themes from families with direct applicability to systems of care: "What's Missing - Human Dignity" and "What Families Really Need and Recommend in Care." Families shared that valuing each child and creating opportunities for the child and family to enjoy their lives were most important in addressing human dignity in systems of care. They recommended centering the whole child, building relationships of trust and communication, and valuing family-to-family supports to transform the system of care aligned to humanism in care. Families express an urgency for systems to uphold dignity, valuing their child as a whole human being whose quality of life holds meaning and joy, not just as a diagnosis. The highly untenable cost of navigating dehumanizing systems of care reduces quality of life and wellbeing and must be transformed.

Trauma-Informed Leadership in Quality Improvement: What We Learned From Practicing in a Pandemic.

In 2020, midway through the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity project, the coronavirus disease 2019 pandemic erupted and caused significant disruptions for the 10 participating state teams, the project leadership, and collaborative partner organizations. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing of children, families, and clinicians alike. We conducted a series of key informant interviews and surveys, alongside other process measures, to learn from state teams what it was like "on the ground" to try to continue improving care delivery, child quality of life, and family wellbeing under such upheaval. In this article, we synthesize qualitative and descriptive findings from these varied data sources within the framework of the trauma-informed principles we applied as a leadership team to prevent burnout, increase resilience, and maintain progress among all project participants, especially clinicians and the uniquely vulnerable family leaders. Lessons learned will be offered that can be applied to future natural and human-made emergencies that impact responsive pediatric care delivery improvement.

The impact of Internet access for people with spinal cord injuries: a descriptive analysis of a pilot study.

PURPOSE: A pilot study was undertaken regarding the effect of Internet access on health-related quality of life (HRQoL) and self-reported impact for people with spinal cord injuries (SCI). This study is unique in providing free Internet access and looking at benefits for people with disabilities. METHOD: HRQoL was measured using indicators of global health and social isolation at baseline and after 6 to 19 months of use via telephone interviews on a convenience sample of 23 adults with SCI. Additionally, monthly telephone surveys measured usage patterns, recreation, and self-reported impact. Both quantitative and qualitative analyses were conducted. Bivariate tests for differences in proportions and paired T-tests were conducted. Qualitatively, conceptual categories of impact were created using the Constant Comparative Method. RESULTS: Qualitatively, the predominant benefit was quality of life, mentioned by 61% of participants 46% of months surveyed, with quantitative trends towards improved emotional health. Ease of access to information, social connection, and quality of information were also frequently reported, with modest support from quantitative data. CONCLUSIONS: The study's persuasive qualitative results suggest the Internet has particular benefit to people with disabilities and that rehabilitation goals should include leisure. Further scientific research is strongly warranted.

A telerehabilitation intervention for persons with spinal cord dysfunction.

Pressure ulcers and depression are common preventable conditions secondary to a spinal cord dysfunction. However, few successful, low-cost preventive approaches have been identified. We have developed a dynamic automated telephone calling system, termed Care Call, to empower and motivate people with spinal cord dysfunction to improve their skin care, seek treatment for depression, and appropriately use the healthcare system. Herein, we describe the design and development of Care Call, its novel features, and promising preliminary results of our pilot testing. Voice quality testing showed that Care Call was able to understand all voice characteristics except very soft-spoken speech. Importantly, pilot study subjects felt Care Call could be particularly useful for people who are depressed, those with acute injury, and those without access to quality care. The results of a randomized controlled trial currently underway to evaluate Care Call will be available in 2011.