Experiences of Alaska Native people living with burn injury and opportunities for health system strengthening.

BACKGROUND: Injuries are a leading cause of death and disability for Alaska Native (AN) people. Alaska Native Tribal Health Consortium (ANTHC) is supporting the development of a burn care system that includes a partnership between Alaska Native Medical Center (ANMC) in Anchorage, AK and UW Medicine Regional Burn Center at Harborview Medical Center (HMC) in Seattle, WA. We aimed to better understand the experiences of AN people with burn injuries across the care continuum to aid development of culturally appropriate care regionalization. METHODS: We performed focus groups with twelve AN people with burn injury and their caregivers. A multidisciplinary team of burn care providers, qualitative research experts, AN care coordinator, and AN cultural liaison led focus groups to elicit experiences across the burn care continuum. Transcripts were analyzed using a phenomenological approach and inductive coding to understand how AN people and families navigated the medical and community systems for burn care and areas for improvement. RESULTS: Three themes were identified: 1-Challenges with local burn care in remote communities including limited first aid, triage, pain management, and wound care, as well as long-distance transport to definitive care; 2-Divergence between cultural values and medical practices that generated mistrust in the medical system, isolation from their support systems, and recovery goals that were not aligned with their needs; 3-Difficulty accessing emotional health support and a survivor community that could empower their resilience. CONCLUSION: Participants reported modifiable barriers to culturally competent treatment for burn injuries among AN people. The findings can inform initiatives that leverage existing resources, including expansion of the Extension for Community Healthcare Outcomes (ECHO) telementoring program, promulgation of the Phoenix Society Survivors Offering Assistance in Recovery (SOAR) to AK, coordination of regionalized care to reduce time away from AK and provide more comfortable community reintegration, and define rehabilitation goals in terms that align with personal goals and subsistence lifestyle skills. Long-distance transport times are non-modifiable, but better pre-hospital care could be achieved by harnessing existing telehealth services and adapting principles of prolonged field care to allow for triage, initial care, and resuscitation in remote environments.

Temperature Sensitivity After Burn Injury: A Burn Model System National Database Hot Topic.

People living with burn injury often report temperature sensitivity. However, its epidemiology and associations with health-related quality of life (HRQOL) are unknown. We aimed to characterize temperature sensitivity and determine its impact on HRQOL to inform patient education after recovery from burn injury. We used the multicenter, longitudinal Burn Model System National Database to assess temperature sensitivity at 6, 12, and 24 months after burn injury. Chi-square and Kruskal-Wallis tests determined differences in patient and injury characteristics. Multivariable, multilevel generalized linear regression models determined the association of temperature sensitivity with Satisfaction with Life (SWL) scale scores and Veterans RAND 12 (VR-12) physical and mental health summary component (MCS) scores. The cohort comprised 637 participants. Two thirds (66%) experienced temperature sensitivity. They had larger burns (12% TBSA, interquartile range [IQR] 4-30 vs 5% TBSA, IQR 2-15; P < .0001), required more grafting (5% TBSA, IQR 1-19 vs 2% TBSA, IQR 0-6; P < .0001), and had higher intensity of pruritus at discharge (11% severe vs 5% severe; P = .002). After adjusting for confounding variables, temperature sensitivity was strongly associated with lower SWL (odds ratio [OR] -3.2, 95% confidence interval [CI] -5.2, -1.1) and MCS (OR -4.0, 95% CI -6.9, -1.2) at 6 months. Temperature sensitivity decreased over time (43% at discharge, 4% at 24 months) and was not associated with poorer HRQOL at 12 and 24 months. Temperature sensitivity is common after burn injury and associated with worse SWL and MCS during the first year after injury. However, temperature sensitivity seems to improve and be less intrusive over time.

"Living Well" After Burn Injury: Using Case Reports to Illustrate Significant Contributions From the Burn Model System Research Program.

The Burn Model System (BMS) program of research has been funded since 1993 by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The overarching aim of this program is to improve outcomes and quality of life for people with burns in the areas of health and function, employment, and community living and participation. This review reports on BMS contributions that have affected the lives of individuals with a significant burn injury using case reports to associate BMS contributions with recovery. In January 2020, current BMS grantee researchers assessed peer-reviewed BMS publications from 1994 to 2020. Using case report methodology, contributions were linked to three individuals treated at one of the four Burn Model System institutions. With over 25 years of NIDILRR funding, unique BMS contributions to patient recovery were identified and categorized into one of several domains: treatment, assessment measures, sequelae, peer support, employment, and long-term functional outcomes. A second review for significant results of BMS research that add to the understanding of burn injury, pathophysiology, and recovery research was identified and categorized as injury recovery research. The case study participants featured in this review identified select NIDILRR research contributions as having direct, personal benefit to their recovery. The knowledge generation and clinical innovation that this research program has contributed to our collective understanding of recovery after burn injury is considerable. Using case study methodology with three adult burn survivors, we highlight the impact and individual significance of program findings and reinforce the recognition that the value of any clinical research must have relevance to the lives of the study population.