“If you respect me, you are respecting my culture”: methods and recommendations for personalizing a TBI transitional care intervention

References

• CDC Health Disparities & Inequalities Report (CHDIR) - Minority Health - CDC [Internet]. 2020 [cited 2021 Mar 29]. Available from: https://www.cdc.gov/minorityhealth/CHDIReport.html
   Google Scholar
• Arango-Lasprilla JC, Kreutzer JS. Racial and ethnic disparities in functional, psychosocial, and neurobehavioral outcomes after brain injury. J Head Trauma Rehabil. 2010;25(2):128–36. doi:10.1097/HTR.0b013e3181d36ca3.
   PubMed Web of Science ®Google Scholar
• Coleman EA. Falling through the cracks: challenges and opportunities for improving transitional care for persons with continuous complex care needs. J Am Geriatr Soc. 2003;51(4):549–55. doi:10.1046/j.1532-5415.2003.51185.x.
   PubMed Web of Science ®Google Scholar
• Naylor M, Keating SA. Transitional care. J Soc Work Educ. 2008;44(sup3):65–73. doi:10.5175/JSWE.2008.773247714.
   Google Scholar
• Bettger JP, Alexander KP, Dolor RJ, Olson DM, Kendrick AS, Wing L. Transitional care after hospitalization for acute stroke or myocardial infarction: a systematic review. Ann Intern Med. 2012;157(6):407–16. doi:10.7326/0003-4819-157-6-201209180-00004.
   PubMed Web of Science ®Google Scholar
• Caplan B, Bogner J, Brenner L, Manskow US, Sigurdardottir S, Røe C. Factors affecting caregiver burden 1 year after severe traumatic brain injury: a prospective nationwide multicenter study. J Head Trauma Rehabil. 2015;30(6):411–23. doi:10.1097/HTR.0000000000000085.
   PubMed Web of Science ®Google Scholar
• Naylor MD, Sochalski JA. Scaling up: bringing the transitional care model into the mainstream. Commonw Fund. 2010;103(11):1–12.
   Google Scholar
• Olson DM, Bettger JP, Alexander KP, Kendrick AS, Irvine JR, Wing L. Transition of care for acute stroke and myocardial infarction patients: from hospitalization to rehabilitation, recovery, and secondary prevention. Evid Rep Technol Assess. 2011;202:1.
   Google Scholar
• Duncan PW, Bushnell CD, Rosamond WD, Berkeley SBJ, Gesell SB, D’Agostino RB. The Comprehensive Post-Acute Stroke Services (COMPASS) study: design and methods for a cluster-randomized pragmatic trial. BMC Neurol. 2017;17(1):133. doi:10.1186/s12883-017-0907-1.
   PubMedGoogle Scholar
• Bell KR, Temkin NR, Esselman PC, Doctor JN, Bombardier CH, Fraser RT. The effect of a scheduled telephone intervention on outcome after moderate to severe traumatic brain injury: a randomized trial. Arch Phys Med Rehabil. 2005;86(5):851–56. doi:10.1016/j.apmr.2004.09.015.
   PubMed Web of Science ®Google Scholar
• Salazar AM, Warden DL, Schwab K, Spector J, Braverman S, Walter J. Cognitive rehabilitation for traumatic brain injury: a randomized trial. JAMA. 2000;283(23):3075–81. doi:10.1001/jama.283.23.3075.
   PubMed Web of Science ®Google Scholar
• Martin EM, Coyle MK, Warden DL, Salazar A. Telephonic nursing in traumatic brain injury: a study shows the effect of psychiatric nurses. Am J Nurs. 2003;103(10):75–76. doi:10.1097/00000446-200310000-00036.
   PubMed Web of Science ®Google Scholar
• Rosario ER, Espinoza L, Kaplan S, Khonsari S, Thurndyke E, Bustos M. Patient navigation for traumatic brain injury promotes community re-integration and reduces re-hospitalizations. Brain Inj. 2017;31(10):1340–47. doi:10.1080/02699052.2017.1325937.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Loflin C, Byom L, Harris G, Daly K, Rink L. Transitions of care interventions to improve quality of life for patients with acute conditions: a systematic literature review. Health Qual Life Outcomes. 2021;19(1). doi:10.1186/s12955-021-01672-5.
   PubMed Web of Science ®Google Scholar
• Iwelunmor J, Newsome V, Airhihenbuwa CO. Framing the impact of culture on health: a systematic review of the PEN-3 cultural model and its application in public health research and interventions. Ethn Health. 2014;19(1):20–46. doi:10.1080/13557858.2013.857768.
   PubMed Web of Science ®Google Scholar
• Joo JY, Liu MF. Effectiveness of culturally tailored interventions for chronic illnesses among ethnic minorities. West J Nurs Res. 2020;43(1):73–84. doi:10.1177/0193945920918334.
   PubMed Web of Science ®Google Scholar
• Choi SE, Rush EB. Effect of a short-duration, culturally tailored, community-based diabetes self-management intervention for Korean immigrants: a pilot study. Diabetes Educ. 2012;38(3):377–85. doi:10.1177/0145721712443292.
   PubMed Web of Science ®Google Scholar
• Benuto LT, Newlands R, Singer J, Casas J, Cummings C. Culturally sensitive clinical practices: a mixed methods study. Psychol Serv. 2020;18(4):632–42. doi:10.1037/ser0000493.
   PubMed Web of Science ®Google Scholar
• Tucker CM, Arthur TM, Roncoroni J, Wall W, Sanchez J. Patient-centered, culturally sensitive health care. Am J Lifestyle Med. 2015;9(1):63–77. doi:10.1177/1559827613498065.
   Web of Science ®Google Scholar
• Dutta MJ. Communicating about culture and health: theorizing culture-centered and cultural sensitivity approaches. Commun Theory. 2007;17(3):304–28. doi:10.1111/j.1468-2885.2007.00297.x.
   Web of Science ®Google Scholar
• Foronda CL. A concept analysis of cultural sensitivity. J Transcult Nurs. 2008;19(3):207–12. doi:10.1177/1043659608317093.
   PubMed Web of Science ®Google Scholar
• Lauricella M, Valdez JK, Okamoto SK, Helm S, Zaremba C. Culturally grounded prevention for minority youth populations: a systematic review of the literature. J Prim Prev. 2016;37(1):11–32. doi:10.1007/s10935-015-0414-3.
   PubMed Web of Science ®Google Scholar
• Hecht ML, Krieger JLR. The principle of cultural grounding in school-based substance abuse prevention: the drug resistance strategies project. J Lang Soc Psychol. 2006;25(3):301–19. doi:10.1177/0261927X06289476.
   Web of Science ®Google Scholar
• Sastry S, Stephenson M, Dillon P, Carter A. A meta-theoretical systematic review of the culture-centered approach to health communication: toward a refined,“nested” model. Commun Theory. 2019;31(3):380–421. doi:10.1093/ct/qtz024.
   Web of Science ®Google Scholar
• Moore L, Britten N, Lydahl D, Naldemirci Ö, Elam M, Wolf A. Barriers and facilitators to the implementation of person-centred care in different healthcare contexts. Scand J Caring Sci. 2017;31(4):662–73. doi:10.1111/scs.12376.
   PubMed Web of Science ®Google Scholar
• Snyderman R. Personalized health care: from theory to practice. Biotechnol J. 2012;7(8):973–79. doi:10.1002/biot.201100297.
   PubMed Web of Science ®Google Scholar
• Cesuroglu T, Van Ommen B, Malats N, Sudbrak R, Lehrach H, Brand A. Public health perspective: from personalized medicine to personal health. Pers Med. 2012;9(2):115–19. doi:10.2217/pme.12.16.
   PubMed Web of Science ®Google Scholar
• Fan H, Poole MS. What is personalization? Perspectives on the design and implementation of personalization in information systems. J Organ Comput Electron Commer. 2006;16(3–4):179–202.
   Web of Science ®Google Scholar
• Kocaballi AB, Berkovsky S, Quiroz JC, Laranjo L, Tong HL, Rezazadegan D. The personalization of conversational agents in health care: systematic review. J Med Internet Res. 2019;21(11):e15360. doi:10.2196/15360.
   PubMed Web of Science ®Google Scholar
• Coupe N, Cotterill S, Peters S. Tailoring lifestyle interventions to low socio-economic populations: a qualitative study. BMC Public Health. 2018;18(1):1–15. doi:10.1186/s12889-018-5877-8.
   Google Scholar
• National Institutes of Health, National Institute on Aging. Stage Model for Behavioral Intervention Development [Internet]. National institute on aging. [cited 2022 Feb 8]. Available from: https://www.nia.nih.gov/research/dbsr/stage-model-behavioral-intervention-development
   Google Scholar
• Oyesanya TO, Loflin C, Harris G, Bettger JP. “Just tell me in a simple way”: a qualitative study on opportunities to improve the transition from acute hospital care to home from the perspective of patients with traumatic brain injury, families, and providers. Clin Rehabil. 2021;35(7):1056–72. doi:10.1177/0269215520988679.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Harris Walker G, Loflin C, Bettger JP. Negotiating the transition from acute hospital care to home: perspectives of patients with traumatic brain injury, caregivers, and healthcare providers. J Integr Care. 2021;29(4):414–24. doi:10.1108/JICA-04-2021-0023.
   Web of Science ®Google Scholar
• Oyesanya TO. The experience of patients with ABI and their families during the hospital stay: a systematic review of qualitative literature. Brain Inj. 2017;31(2):151–73. doi:10.1080/02699052.2016.1225987.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Ward EC. Mental health in women with traumatic brain injury: a systematic review on depression and hope. Health Care Women Int. 2015;37(1):45–74. doi:10.1080/07399332.2015.1005307.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Arulselvam K, Thompson N, Norelli J, Seel RT. Health, wellness, and safety concerns of persons with TBI and their family caregivers: a qualitative content analysis. Disabil Rehabil. 2019;43(5):685–95. doi:10.1080/09638288.2019.1638456.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Bowers B. Managing visitors during the hospital stay: the experience of family caregivers of patients with traumatic brain injury. J Fam Nurs. 2017;23(2):273–98. doi:10.1177/1074840717697673.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Snedden TR. Pediatric nurses’ perceived knowledge and beliefs of evidence-based practice in the care of children and adolescents with moderate-to-severe traumatic brain injury. J Spec Pediatr Nurs. 2018;23(2):1–11. doi:10.1111/jspn.12209.
   Web of Science ®Google Scholar
• Oyesanya TO, Thomas MA. Strategies nurses use when caring for patients with moderate-to-severe traumatic brain injury who have cognitive impairments. J Clin Nurs. 2019;28(21–22):4098–109. doi:10.1111/jocn.14958.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, LeCroy T, Sweatman M, Hatch D, Nyankori L, Kang Y. A medication management intervention for SCI and ABI patients and families. West J Nurs Res. 2020;42(12):1113–28. doi:10.1177/0193945920926436.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Royer HR, Turkstra LS, Bowers BJ. Nurses’ concerns about caring for patients with acute and chronic traumatic brain injury. J Clin Nurs. 2017;27(7–8):1408–19. 27. doi:10.1111/jocn.14298.
   Web of Science ®Google Scholar
• Oyesanya TO, Thompson N, Arulselvam K, Seel RT. Technology and TBI: perspectives of persons with TBI and their family caregivers on technology solutions to address health, wellness, and safety concerns. Assist Technol. 2019;33(4):190–200. doi:10.1080/10400435.2019.1612798.
   PubMedGoogle Scholar
• Oyesanya TO. Selection of discharge destination for patients with moderate-to-severe traumatic brain injury. Brain Inj. 2020;34(9):1222–28. doi:10.1080/02699052.2020.1797172.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Harris G, Yang Q, Byom L, Cary MP Jr, Zhao A. Inpatient rehabilitation facility discharge destination among younger adults with traumatic brain injury: differences by race and ethnicity. Brain Inj. 2021;35(6):661–74. doi:10.1080/02699052.2021.1895317.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Bowers BJ. “I’m trying to be the safety net”: family protection of patients with moderate-to-severe TBI during the hospital stay. Qual Health Res. 2017;27(12):1804–15. doi:10.1177/1049732317697098.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Cary MP Jr, Byom L, Harris Walker G, Yang Q, Bettger JP. Age- and sex-specific predictors of inpatient rehabilitation facility discharge destination for adult patients with traumatic brain injury. Brain Inj. 2021;35(12–13):1529–41. doi:10.1080/02699052.2021.1972453.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Turkstra LS, Brown RL. Development, reliability, and validity of the perceptions of brain injury survey. J Nurs Meas. 2020;28(2):229–58. doi:10.1891/JNM-D-19-00007.
   PubMed Web of Science ®Google Scholar
• Graves W, Oyesanya TO, Gormley M, Roe C, Andelic N, Seel RT. Pre- and in-hospital mortality trends for moderate-to-severe traumatic brain injuries: an analysis of the national trauma data bank (2008-2014). Brain Inj. 2021;35(3):265–74. doi:10.1080/02699052.2021.1873419.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Moran TP, Wright DW, Espinoza T. Regional variations in traumatic brain injury rehabilitation outcomes. Arch Phys Med Rehabil. 2021;102(1):68–75. doi:10.1016/j.apmr.2020.07.011.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO. Veterans health administration nurses’ training and beliefs related to care of patients with traumatic brain injury. PLoS One. 2019;14(9):e0222585. doi:10.1371/journal.pone.0222585.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Brown RL, Turkstra LS. Caring for patients with traumatic brain injury: a survey of nurses’ perceptions. J Clin Nurs. 2016;11–12(11–12):1562–74. doi:10.1111/jocn.13457.
   Google Scholar
• Oyesanya TO, Thomas MA, Brown RL, Turkstra LS. Nurses’ beliefs about caring for patients with traumatic brain injury. West J Nurs Res. 2016;38(9):1114–38. doi:10.1177/0193945916636629.
   PubMed Web of Science ®Google Scholar
• Mattke S, Cramer SC, Wang M, Bettger JP, Cockroft KM, Feng W. Estimating minimal clinically important differences for two scales in patients with chronic traumatic brain injury. Curr Med Res Opin. 2020;36(12):1999–2007. doi:10.1080/03007995.2020.1841616.
   PubMed Web of Science ®Google Scholar
• Backhaus SL, Ibarra SL, Klyce D, Trexler LE, Malec JF. Brain injury coping skills group: a preventative intervention for patients with brain injury and their caregivers. Arch Phys Med Rehabil. 2010;91(6):840–48. doi:10.1016/j.apmr.2010.03.015.
   PubMed Web of Science ®Google Scholar
• Sterling M. Patient specific functional scale. Aust J Physiother. 2007;53(1):65–66. doi:10.1016/S0004-9514(07)70066-1.
   PubMed Web of Science ®Google Scholar
• Togher L. Improving communication for people with brain injury in the 21st century: the value of collaboration. Brain Impair. 2013;14(1):130. doi:10.1017/BrImp.2013.3.
   Web of Science ®Google Scholar
• Wolff JL, Roter DL, Boyd CM, Roth DL, Echavarria DM, Aufill J. Patient–family agenda setting for primary care patients with cognitive impairment: the SAME page trial. J Gen Intern Med. 2018;33(9):1478–86. doi:10.1007/s11606-018-4563-y.
   PubMed Web of Science ®Google Scholar
• National Health and Care Excellence Clinical Guidelines. Discharge and follow-up of children, young people, and adults with head injury [Internet]. National Institute for Health and Care Excellence (UK); 2014 [cited 2019 Mar 21]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK332976/
   Google Scholar
• Ryan P, Sawin KJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009;57(4):217–25. doi:10.1016/j.outlook.2008.10.004.
   PubMed Web of Science ®Google Scholar
• Oyesanya TO, Loflin C, You H, Kandel M, Johnson K, Yang Q. Design, methods, and baseline characteristics of the Brain Injury Education, Training, and Therapy to Enhance Recovery (BETTER) feasibility study: a transitional care intervention for younger adult patients with traumatic brain injury and caregivers. Curr Med Res Opin. 2022;38(5):697–710. doi:10.1080/03007995.2022.2043657.
   PubMed Web of Science ®Google Scholar
• Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. doi:10.1177/1049732305276687.
   PubMed Web of Science ®Google Scholar
• Tracy SJ. Qualitative quality: eight “big-tent” criteria for excellent qualitative research. Qual Inq. 2010;16(10):837–51. doi:10.1177/1077800410383121.
   Web of Science ®Google Scholar
• Knox L, Douglas JM, Bigby C. “I won’t be around forever”: understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychol Rehabil. 2016;26(2):236–60. doi:10.1080/09602011.2015.1019519.
   PubMed Web of Science ®Google Scholar
• Claude Blais M, Boisvert JM. Psychological and marital adjustment in couples following a traumatic brain injury (TBI): a critical review. Brain Inj. 2005;19(14):1223–35. doi:10.1080/02699050500309387.
   PubMed Web of Science ®Google Scholar
• Stephenson LA, Wagner SJ, Bolton D. Maximizing patient autonomy to improve outcomes. Br J Hosp Med. 2013;74(Sup1):C14–6. doi:10.12968/hmed.2013.74.Sup1.C14.
   Google Scholar
• Jones HE, Kirtadze I, Otiashvili D, O’Grady KE, Murphy K, Zule W. Process and product in cross-cultural treatment research: development of a culturally sensitive women-centered substance use intervention in Georgia. J Addict. 2014;2014:1–12. doi:10.1155/2014/163603.
   Google Scholar
• Skewes MC, Hallum-Montes R, Gardner SA, Blume AW, Ricker A, FireMoon P. Partnering with native communities to develop a culturally grounded intervention for substance use disorder. Am J Community Psychol. 2019;64(1–2):72–82. doi:10.1002/ajcp.12354.
   PubMed Web of Science ®Google Scholar
• Mastin T, Murphy AG, Riplinger AJ, Ngugi E. Having their say: sex workers discuss their needs and resources. Health Care Women Int. 2016;37(3):343–63. doi:10.1080/07399332.2015.1020538.
   Web of Science ®Google Scholar
• U.S. Census Bureau. U.S. Census Bureau QuickFacts: United States [Internet]. 2021 [cited 2023 Feb 1]. Available from: https://www.census.gov/quickfacts/fact/table/US/PST045221
   Google Scholar
• U.S. Census Bureau. Poverty thresholds [internet]. Census.gov. 2021 [cited 2023 Feb 1]. Available from: https://www.census.gov/data/tables/time-series/demo/income-poverty/historical-poverty-thresholds.html
   Google Scholar
• Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006;27(1):1–28. doi:10.1146/annurev.publhealth.27.021405.102113.
   PubMed Web of Science ®Google Scholar