Co-creation of a post-traumatic brain injury sexuality information toolkit: a patient-oriented project

References

• Brain Injury Association of America. BIAA adopts new TBI definition; 2011 [cited 2018 Jun 13]. Available from: https://www.biausa.org/public-affairs/public-awareness/news/biaa-adopts-new-tbi-definition
   Google Scholar
• Bélanger D. Traumatic brain injury and sexual rehabilitation. Sexologies. 2009;18(2):83–85.
   Google Scholar
• Downing MG, Stolwyk R, Ponsford JL. Sexual changes in individuals with traumatic brain injury: a control comparison. J Head Trauma Rehabil. 2013;28(3):171–178.
   PubMed Web of Science ®Google Scholar
• Simpson GK, Baguley IJ. Prevalence, correlates, mechanisms, and treatment of sexual health problems after traumatic brain injury: a scoping review. Crit Rev Phys Rehabil Med. 2012;24(1–2):1–34.
   Google Scholar
• Moreno JA, Olivera SL, Valdivia ER, et al. Sexual quality-of-life, sexual satisfaction and relationship satisfaction in partnered individuals with traumatic brain injury. Brain Inj. 2014;28(5–6):551–552.
   Web of Science ®Google Scholar
• New Zealand Guidelines Group. Traumatic brain injury: diagnosis, acute management and rehabilitation – evidence-based best practice guideline; 2006. Available from: http://www.moh.govt.nz/NoteBook/nbbooks.nsf/0/B8738C3605889A6ACC257A6D00809243/$file/traumatic-brain-injury-acc.pdf
   Google Scholar
• INESSS-ONF. Clinical practice guideline for the rehabilitation of adults with moderate to severe TBI; Canada; 2016 [cited 2018 Apr 9]. Available from: https://braininjuryguidelines.org/
   Google Scholar
• Simpson G, Long E. An evaluation of sex education and information resources and their provision to adults with traumatic brain injury. J Head Trauma Rehabil. 2004;19(5):413–428.
   PubMed Web of Science ®Google Scholar
• Downing M, Ponsford J. Sexuality in individuals with traumatic brain injury and their partners. Neuropsychol Rehabil. 2016;28:1–10.
   PubMed Web of Science ®Google Scholar
• Dyer K, das Nair R. Talking about sex after traumatic brain injury: perceptions and experiences of multidisciplinary rehabilitation professionals. Disabil Rehabil. 2014;36(17):1431–1438.
   PubMed Web of Science ®Google Scholar
• Moreno JA, das Nair R. Translating knowledge into practice: content analysis of online resources about sexual difficulties for individuals with traumatic brain injury. Sex Relation Ther. 2015;30(4):448–461.
   Web of Science ®Google Scholar
• Moreno JA, Gan C, Zasler N, et al. Experiences, attitudes, and needs related to sexuality and service delivery in individuals with traumatic brain injury. NeuroRehabilitation. 2015;37(1):99–116.
   PubMed Web of Science ®Google Scholar
• INESSS-ONF. État d’implantation des recommandations du Guide de pratique clinique TCCMG INESSS-ONF Rapport synthèse des résultats de la consultation pour le Québec et l’Ontario [Implementation status of the recommendations from the INESSS-ONF MSTBI Clinical Practice Guideline - Summary report of the consultation results for Quebec and Ontario]. Institut national d'excellence en santé et services sociaux; 2017. p. 14.
   Google Scholar
• Kreuter M, Dahllöf AG, Gudjonsson G, et al. Sexual adjustment and its predictors after traumatic brain injury. Brain Inj. 1998;12(5):349–368.
   PubMed Web of Science ®Google Scholar
• Haboubi NH, Lincoln N. Views of health professionals on discussing sexual issues with patients. Disabil Rehabil. 2003;25(6):291–296.
   PubMed Web of Science ®Google Scholar
• Arango-Lasprilla JC, Olabarrieta-Landa L, Ertl MM, et al. Provider perceptions of the assessment and rehabilitation of sexual functioning after traumatic brain injury. Brain Inj. 2017;31(12):1605–1611.
   PubMed Web of Science ®Google Scholar
• Latella D, Maggio MG, De Luca R, et al. Changes in sexual functioning following traumatic brain injury: an overview on a neglected issue. J Clin Neurosci. 2018;58:1.
   PubMed Web of Science ®Google Scholar
• Sander AM. Integrating sexuality into traumatic brain injury rehabilitation. Brain Injury Prof. 2010;7:8–12.
   Google Scholar
• Simpson G. Addressing the sexual concerns of persons with traumatic brain injury in rehabilitation settings: a framework for action. Brain Impair. 2001;2(2):97–108.
   Google Scholar
• Sander AM, Maestas K. Information/education page. Sexuality after traumatic brain injury. Arch Phys Med Rehabil. 2014;95(9):1801–1802.
   PubMedGoogle Scholar
• Sander AM, Moessner AM, Kendall KS, et al. Sexual functioning and satisfaction after traumatic brain injury – an education manual. Houston, TX: Baylor College of Medicine; 2011. p. 26.
   Google Scholar
• Talis Consulting Limited. Sexual problems following traumatic brain injury – information booklet for patients and their partner. Carmarthen, United Kingdom: Talis Consulting Limited; 2010. p. 8.
   Google Scholar
• Hamonet C. La sexualité traumatisée – Aborder la sexualité des traumatisés crâniens [Traumatic sexuality - Addressing the sexuality of individuals with traumatic brain injury]. Chauray, France: Fondation MAAF Assurances; 2008. p. 28.
   Google Scholar
• Simpson G. You and Me. A guide to sex and sexuality after traumatic brain injury. 2nd ed. Sydney, Australia: South West Sydney Area Health Service; 2003.
   Google Scholar
• Ahmad TG. Sex and sexuality after brain injury. Nottingham, United Kingdom: Headway – The Brain Injury Association; 2017.
   Google Scholar
• Bennett ER, Reuter-Rice K, Laskowitz D. Genetic influences in traumatic brain injury. In: Translational research in traumatic brain injury [Internet]. Boca Raton (FL): CRC Press/Taylor and Francis Group; 2016. Available from: https://www.ncbi.nlm.nih.gov/books/NBK326725/
   Google Scholar
• Hux K, Bush E, Zickefoose S, et al. Exploring the study skills and accommodations used by college student survivors of traumatic brain injury. Brain Inj. 2010;24(1):13–26.
   PubMed Web of Science ®Google Scholar
• Harvey J, Hux K. Text-to-speech accommodations for the reading challenges of adults with traumatic brain injury. Brain Inj. 2015;29(7–8):888–897.
   PubMed Web of Science ®Google Scholar
• Kennedy MR, Krause MO, Turkstra LS. An electronic survey about college experiences after traumatic brain injury. Neuro Rehabil. 2008;23(6):511–520.
   Google Scholar
• Rabinowitz AR, Levin HS. Cognitive sequelae of traumatic brain injury. Psychiatr Clin N Am. 2014;37(1):1.
   PubMed Web of Science ®Google Scholar
• Verhoeven L, Perfetti C. Advances in text comprehension: model, process and development. Appl Cognit Psychol. 2008;22(3):293–301.
   Web of Science ®Google Scholar
• Sohlberg MM, Griffiths GG, Fickas S. An evaluation of reading comprehension of expository text in adults with traumatic brain injury. Am J Speech Lang Pathol. 2014;23(2):160–175.
   PubMed Web of Science ®Google Scholar
• Duarte J, Guerra A. User-centered healthcare design. Proc Comput Sci. 2012;14(C):189–197.
   Google Scholar
• Norman D. The design of everyday things. Revised and expanded edition. New York: Basic Books; 2013.
   Google Scholar
• Witteman HO, Dansokho SC, Colquhoun H, et al. User-centered design and the development of patient decision aids: protocol for a systematic review. Syst Rev. 2015;4(1):11.
   PubMedGoogle Scholar
• Morgan DL. Focus groups as qualitative research. Newbury Park (CA): Sage Publications; 1988.
   Google Scholar
• Ponsford J. Sexual changes associated with traumatic brain injury. Neuropsychol Rehabil. 2003;13(1–2):275–289.
   PubMed Web of Science ®Google Scholar
• Hanks RA, Sander AM, Millis SR, et al. Changes in sexual functioning from 6 to 12 months following traumatic brain injury: a prospective TBI model system multicenter study. J Head Trauma Rehabil. 2013;28(3):179–185.
   PubMed Web of Science ®Google Scholar
• Gill CJ, Sander AM, Robins N, et al. Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners. J Head Trauma Rehabil. 2011;26(1):56–68.
   PubMed Web of Science ®Google Scholar
• Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns. 2014;96(3):395–403.
   PubMed Web of Science ®Google Scholar
• Version D. 4.5, web application for managing, analyzing, and presenting qualitative and mixed method research data (2013). Los Angeles (CA): SocioCultural Research Consultants, LLC; 2017. Available from: www.dedoose.com
   Google Scholar
• Boyatzis RE. Transforming qualitative information: thematic analysis and code development. Thousand Oaks, CA, US: Sage; 1998.
   Google Scholar
• Aloni A, Keren O, Cohen M, et al. Incidence of sexual dysfunction in TBI patients during the early post-traumatic in-patient rehabilitation phase. Brain Inj. 1999;13(2):89–97.
   PubMed Web of Science ®Google Scholar
• Hibbard MR, Gordon WA, Flanagan S, et al. Sexual dysfunction after traumatic brain injury. Neuro Rehabil. 2000;15(2):107–120.
   Google Scholar
• Moreno JA, McKerral M. Towards a taxonomy of sexuality following traumatic brain injury: a pilot exploratory study using cluster analysis. Neuro Rehabil. 2017;41(2):281–291.
   Google Scholar
• Simpson G, Blaszczynski A, Hodgkinson A. Sex offending as a psychosocial sequela of traumatic brain injury. J Head Trauma Rehabil. 1999;14(6):567–580.
   PubMed Web of Science ®Google Scholar
• Bivona U, Antonucci G, Contrada M, et al. A biopsychosocial analysis of sexuality in adult males and their partners after severe traumatic brain injury. Brain Inj. 2016;30(9):1082–1095.
   PubMed Web of Science ®Google Scholar
• Sander AM, Maestas KL, Pappadis MR, et al. Multicenter study of sexual functioning in spouses/partners of persons with traumatic brain injury. Arch Phys Med Rehabil. 2016;97(5):753–759.
   PubMed Web of Science ®Google Scholar
• Crowe S, Ponsford J. The role of imagery in sexual arousal disturbances in the male traumatically brain injured individual. Brain Inj. 1999;13(5):347–354.
   PubMed Web of Science ®Google Scholar
• Gosling J, Oddy M. Rearranged marriages: marital relationships after head injury. Brain Inj. 1999;13(10):785–796.
   PubMed Web of Science ®Google Scholar
• Aloni R, Katz S. Sexual difficulties after traumatic brain injury and ways to deal with it. Springfield (IL): Charles C Thomas Publisher; 2003.
   Google Scholar
• Hahn EA, Cella D. Health outcomes assessment in vulnerable populations: measurement challenges and recommendations. Arch Phys Med Rehabil. 2003;84(4 Suppl. 2):S35–S42.
   PubMed Web of Science ®Google Scholar
• Cicerone KD, Dahlberg C, Kalmar K, et al. Evidence-based cognitive rehabilitation: recommendations for clinical practice. Arch Phys Med Rehabil. 2000;81(12):1596–1615.
   PubMed Web of Science ®Google Scholar
• Strizzi J, Olabarrieta Landa L, Pappadis M, et al. Sexual functioning, desire, and satisfaction in women with TBI and healthy controls. Behav Neurol. 2015;2015:247479.
   PubMed Web of Science ®Google Scholar
• Sandel ME, Williams KS, Dellapietra L, et al. Sexual functioning following traumatic brain injury. Brain Inj. 1996;10(10):719–728.
   PubMed Web of Science ®Google Scholar
• Katz S, Aloni R. Sexual dysfunction of persons after traumatic brain injury: perceptions of professionals. Int J Rehabil Res. 1999;22(1):45–53.
   PubMed Web of Science ®Google Scholar
• War FA, Jamuna R, Arivazhagan A. Cognitive and sexual functions in patients with traumatic brain injury. Asian J Neurosurg. 2014;9(1):29–32.
   PubMedGoogle Scholar
• Kreutzer JS, Zasler ND. Psychosexual consequences of traumatic brain injury: methodology and preliminary findings. Brain Inj. 1989;3(2):177–186.
   PubMedGoogle Scholar
• Ripley DL, Harrison-Felix C, Sendroy-Terrill M, et al. The impact of female reproductive function on outcomes after traumatic brain injury. Arch Phys Med Rehabil. 2008;89(6):1090–1096.
   PubMed Web of Science ®Google Scholar
• Colantonio A, Mar W, Escobar M, et al. Women's health outcomes after traumatic brain injury. J Women's Health. 2010;19(6):1109–1116.
   PubMed Web of Science ®Google Scholar
• Moreno JA, Arango Lasprilla JC, Gan C, et al. Sexuality after traumatic brain injury: a critical review. Neuro Rehabil. 2013;32(1):69–85.
   Google Scholar
• Gaudet L, Crethar H, Burger S, et al. Self-reported consequences of traumatic brain injury: a study of contrasting TBI and non-TBI participants. Sex Disabil. 2001;19(2):111–119.
   Web of Science ®Google Scholar
• Weddell R, Oddy M, Jenkins D. Social adjustment after rehabilitation: a two year follow-up of patients with severe head injury. Psychol Med. 1980;10(2):257–263.
   PubMed Web of Science ®Google Scholar
• Sabhesan S, Natarajan M. Sexual behavior after head injury in Indian men and women. Arch Sex Behav. 1989;18(4):349–356.
   PubMed Web of Science ®Google Scholar
• Miller BL, Cummings JL, McIntyre H, et al. Hypersexuality or altered sexual preference following brain injury. J Neurol Neurosurg Psychiatry. 1986;49(8):867.
   PubMed Web of Science ®Google Scholar
• Miller L. Sex and the brain-injured patient: regaining love, pleasure, and intimacy. J Cogn Rehabil. 1994;12(3):12–20.
   Google Scholar
• Crawford MJ, Rutter D, Manley C, et al. Systematic review of involving patients in the planning and development of health care. BMJ. 2002;325(7375):1263.
   PubMed Web of Science ®Google Scholar
• Krueger RA, Casey MA. Focus groups: a practical guide for applied research. Vol. xvi. 4th ed. Thousand Oaks (CA): Sage Publications; 2008.
   Google Scholar
• Stephan A, Bieber A, Hopper L, et al. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatr. 2018;18(1):131.
   PubMed Web of Science ®Google Scholar
• Shakespeare T. Disabled sexuality: toward rights and recognition. Sex Disabil. 2000;18(3):159–166.
   Web of Science ®Google Scholar