“You were lying in limbo and you knew nothing”: a thematic analysis of the information needs of spinal cord injured patients and family members in acute care

References

• Nas K, Yazmalar L, Şah V, et al. Rehabilitation of spinal cord injuries. World J Orthop. 2015;6(1):8–16.
   PubMed Web of Science ®Google Scholar
• Post M, Van Leeuwen C. Psychosocial issues in spinal cord injury: a review. Spinal Cord. 2012;50(5):382–389.
   PubMed Web of Science ®Google Scholar
• Lynch J, Cahalan R. The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review. Spinal Cord. 2017;55(11):964–978.
   PubMed Web of Science ®Google Scholar
• Burkell JA, Wolfe DL, Potter PJ, et al. Information needs and information sources of individuals living with spinal cord injury. Health Info Libr J. 2006;23(4):257–265.
   PubMed Web of Science ®Google Scholar
• Meade MA, Taylor LA, Kreutzer JS, et al. A preliminary study of acute family needs after spinal cord injury: analysis and implications. Rehab Psychol. 2004;49(2):150–155.
   Web of Science ®Google Scholar
• Foster M, Amsters D, Carlson G. Spinal cord injury and family caregivers: a description of care and perception of service need. Aust J Prim Health. 2005;11(1):91–101.
   Google Scholar
• Conti A, Garrino L, Montanari P, et al. Informal caregivers’ needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disabil Rehabil. 2016;38(2):159–167.
   PubMed Web of Science ®Google Scholar
• Rodriguez LJ, Rios MP, Costa CL, et al. Relatives of people with spinal cord injury: a qualitative study of caregivers’ metamorphosis. Spinal Cord. 2018;56(6):548–559.
   PubMed Web of Science ®Google Scholar
• McRae J, Smith C, Emmanuel A, et al. The experiences of individuals with cervical spinal cord injury and their family during post-injury care in non-specialised and specialised units in UK. 2020. [cited 2021 Aug 17]. Available from: https://www.researchsquare.com/article/rs-41115/v1
   Google Scholar
• Chen HY, Boore JR. Living with a relative who has a spinal cord injury: a grounded theory approach. J Clin Nurs. 2009;18(2):174–182.
   PubMed Web of Science ®Google Scholar
• Smith E, Synnott K. A prospective audit of inappropriately occupied hospital beds in patients with newly acquired traumatic spinal cord injury. Irish Med J. 2019;112:971–980.
   PubMedGoogle Scholar
• New PW, Scivoletto G, Smith É, et al. International survey of perceived barriers to admission and discharge from spinal cord injury rehabilitation units. Spinal Cord. 2013;51(12):893–897.
   PubMed Web of Science ®Google Scholar
• The All Party Parliamentary Group on Spinal Cord Injury (APPG). A Paralysed System? An Inquiry into the provision of local health services for people being discharged from Spinal Cord Injury Centres. All Party Parliamentary Group on Spinal Cord Injury, London (UK). 2015 [cited 2021 Aug 17]. Available from: https://www.spinal.co.uk/wp-content/uploads/2015/11/SIA-APP-Paralysed-System-Report-FINAL-lo-res.pdf
   Google Scholar
• Burns AS, Santos A, Cheng CL, et al. Understanding length of stay after spinal cord injury: insights and limitations from the access to care and timing project. J Neurotrauma. 2017;34(20):2910–2916.
   PubMed Web of Science ®Google Scholar
• Maharaj MM, Hogan JA, Phan K, et al. The role of specialist units to provide focused care and complication avoidance following traumatic spinal cord injury: a systematic review. Eur Spine J. 2016;25(6):1813–1820.
   PubMed Web of Science ®Google Scholar
• Sumida M, Fujimoto M, Tokuhiro A, et al. Early rehabilitation effect for traumatic spinal cord injury. Arch Phys Med Rehabil. 2001;82(3):391–395.
   PubMed Web of Science ®Google Scholar
• May L, Day R, Warren S. Perceptions of patient education in spinal cord injury rehabilitation. Disabil Rehabil. 2006;28(17):1041–1049.
   PubMed Web of Science ®Google Scholar
• May L, Day R, Warren S. Evaluation of patient education in spinal cord injury rehabilitation: knowledge, problem-solving and perceived importance. Disabil Rehabil. 2006;28(7):405–413.
   PubMed Web of Science ®Google Scholar
• Hart KA, Rintala DH, Fuhrer MJ. Educational interests of individuals with spinal cord injury living in the community: medical, sexuality, and wellness topics. Rehabil Nurs. 1996;21(2):82–90.
   PubMedGoogle Scholar
• Manns P, May L. Perceptions of issues associated with the maintenance and improvement of long-term health in people with SCI. Spinal Cord. 2007;45(6):411–419.
   PubMed Web of Science ®Google Scholar
• Matter B, Feinberg M, Schomer K, et al. Information needs of people with spinal cord injuries. J Spinal Cord Med. 2009;32(5):545–554.
   PubMed Web of Science ®Google Scholar
• Gontkovsky ST, Russum P, Stokic DS. Perceived information needs of community-dwelling persons with chronic spinal cord injury: findings of a survey and impact of race. Disabil Rehabil. 2007;29(16):1305–1312.
   PubMed Web of Science ®Google Scholar
• Thietje R, Giese R, Pouw M, et al. How does knowledge about spinal cord injury-related complications develop in subjects with spinal cord injury? A descriptive analysis in 214 patients. Spinal Cord. 2011;49(1):43–48.
   PubMed Web of Science ®Google Scholar
• Kvåle K, Bondevik M. What is important for patient centred care? A qualitative study about the perceptions of patients with cancer. Scand J Caring Sci. 2008;22(4):582–589.
   PubMed Web of Science ®Google Scholar
• Hoffman J, Salzman C, Garbaccio C, et al. Use of on-demand video to provide patient education on spinal cord injury. J Spinal Cord Med. 2011;34(4):404–409.
   PubMed Web of Science ®Google Scholar
• Smith JA, Shinebourne P. Interpretative phenomenological analysis. Chapter 2, APA handbook of research methods in psychology. Washington (DC): American Psychological Association; 2012. Vol. 2; p. 73–82.
   Google Scholar
• O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–1251.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589–597.
   Web of Science ®Google Scholar
• Braun V, Clarke V. (Mis) conceptualising themes, thematic analysis, and other problems with fugard and potts’(2015) sample-size tool for thematic analysis. International J Soc Res Method. 2016;19(6):739–743.
   Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
   Google Scholar
• Willig C. Perspectives on the epistemological bases for qualitative research. In: Cooper H, Camic PM, Long DL, Panter AT, Rindskopf D., Sher KJ, editors. APA handbook of research methods in psychology, Vol. 1. Foundations, planning, measures, and psychometrics. Washington, DC; American Psychological Association; 2012. p. 5–21.
   Google Scholar
• Terry G, Hayfield N, Clarke V, et al. Thematic analysis. In: Stainton Rogers W, Willig C, editors. The sage handbook of qualitative research in psychology. London: SAGE; 2017. p. 17–37.
   Google Scholar
• Carcary M. The research audit trial–enhancing trustworthiness in qualitative inquiry. Electron J Bus Res Method. 2009;7(1):11–24.
   Google Scholar
• Wolfe D, Hsieh J, Curt A, et al. Neurological and functional outcomes associated with SCI rehabilitation. Top Spinal Cord Inj Rehab. 2007;13(1):11–31.
   Google Scholar
• National Healt Service. The role of the doctor consensus statement. London (UK): National Health Service; 2008. p. 3.
   Google Scholar
• Conti A, Clari M, Kangasniemi M, et al. What self-care behaviours are essential for people with spinal cord injury? A systematic review and Meta-synthesis. Disabil Rehab. 2020. DOI:10.1080/09638288.2020.1783703
   PubMed Web of Science ®Google Scholar
• Parry SM, Puthucheary ZA. The impact of extended bed rest on the musculoskeletal system in the critical care environment. Extreme Physiol Med. 2015;4(1):1–8.
   PubMedGoogle Scholar
• Scivoletto G, Morganti B, Molinari M. Early versus delayed inpatient spinal cord injury rehabilitation: an Italian study. Arch Phys Med Rehab. 2005;86(3):512–516.
   PubMed Web of Science ®Google Scholar
• Gillison FB, Rouse P, Standage M, et al. A Meta-analysis of techniques to promote motivation for health behaviour change from a self-determination theory perspective. Health Psychol Rev. 2019;13(1):110–130.
   PubMed Web of Science ®Google Scholar
• Knowles M. The adult learner: a neglected species. Houston (TX): Gulf Publishing; 1990.
   Google Scholar
• Russell SS. An overview of adult-learning processes. Urol Nurs. 2006;26(5):349–352.
   PubMedGoogle Scholar
• Shepherd JD, Badger-Brown KM, Legassic MS, et al. SCI-U: E-learning for patient education in spinal cord injury rehabilitation. J Spinal Cord Med. 2012;35(5):319–329.
   PubMed Web of Science ®Google Scholar
• Baile WF, Buckman R, Lenzi R, et al. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–311.
   PubMedGoogle Scholar
• O'Farrell B, Evans D. The continuum of care: the process and development of a nursing model for stroke education. Axone. 1998;20(1):16–18.
   PubMedGoogle Scholar
• Wolfe D, Potter P, Sequeira K. Overcoming challenges: the role of rehabilitation in educating individuals with SCI to reduce secondary conditions. Top Spinal Cord Inj Rehab. 2004;10(1):41–50.
   Google Scholar
• Letts L, Ginis KAM, Faulkner G, et al. Preferred methods and messengers for delivering physical activity information to people with spinal cord injury: a focus group study. Rehabil Psychol. 2011;56(2):128–137.
   PubMed Web of Science ®Google Scholar
• Spinal Cord Medicine Patient & Family Education. KentuckyOne Health; [cited 2020 Aug 8]. Available from: http://www.kentuckyonehealth.org/spinal-cord-medicine-patient-family-education
   Google Scholar
• Spinal Cord Injury Patient – Family Teaching Manual. Jefferson University Hospital. Magee Rehabilitation; [cited 2020 Aug 8]. Available from: www.spinalcordcenter.org/consumer/manual.html
   Google Scholar
• Delparte J, Chau B, Mills S, et al. Spinal cord essentials: the development of an individualized, handout-based patient and family education initiative for people with spinal cord injury. Spinal Cord. 2014;52(5):400–406.
   PubMed Web of Science ®Google Scholar
• The University of Alabama Spinal Cord Injury Model System (UAB-SCIMS) Information Network; [cited 2020 Aug 8]. Available from: www.uab.edu/medicine/sci/
   Google Scholar
• Pratt MW, Kerig P, Cowan PA, et al. Mothers and fathers teaching 3-year-olds: authoritative parenting and adult scaffolding of young children’s learning. Dev Psychol. 1988;24(6):832–839.
   Web of Science ®Google Scholar
• Ozyemisci-Taskiran O, Budakoglu II, Coskun O, et al. Breaking bad news to patients with spinal cord injury in Turkey – physiatrists’ perspective. J Spinal Cord Med. 2017;40(4):423–431.
   PubMed Web of Science ®Google Scholar
• Kirshblum SC, Botticello AL, DeSipio GB, et al. Breaking the news: a pilot study on patient perspectives of discussing prognosis after traumatic spinal cord injury. J Spinal Cord Med. 2016;39(2):155–161.
   PubMed Web of Science ®Google Scholar
• Dewar A. Nurses’ experiences in giving bad news to patients with spinal cord injuries. J Neurosci Nurs. 2000;32(6):324–330.
   PubMedGoogle Scholar
• Conti A, Dimonte V, Rizzi A, et al. Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: a qualitative description. PLoS One. 2020;15(10):e0240600.
   PubMed Web of Science ®Google Scholar
• Olinzock BJ. A model for assessing learning readiness for self-direction of care in individuals with spinal cord injuries: a qualitative study. SCI Nurs. 2004;21(2):69–74.
   PubMedGoogle Scholar
• Kendall E, Buys N. An integrated model of psychosocial adjustment following acquired disability. J Rehab. 1998;64:16–20.
   Web of Science ®Google Scholar
• Soundy A, Stubbs B, Freeman P, et al. Factors influencing patients’ hope in stroke and spinal cord injury: a narrative review. Int J Therap Rehab. 2014;21(5):210–218.
   Google Scholar
• Hammell KW. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord. 2007;45(4):260–274.
   PubMed Web of Science ®Google Scholar
• Gerhart KA, Koziol-McLain J, Lowenstein SR, et al. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Ann Emerg Med. 1994;23(4):807–812.
   PubMed Web of Science ®Google Scholar
• Zandrow L. Misguided mercy: hastening death in the disability community. Top Spinal Cord Inj Rehab. 2001;6(4):76–82.
   Google Scholar
• Cushman DM, Thomas K, Mukherjee D, et al. Perceived quality of life with spinal cord injury: a comparison between emergency medicine and physical medicine and rehabilitation physicians. PM&R. 2015;7(9):962–969.
   Web of Science ®Google Scholar
• Gassaway J, Jones ML, Sweatman WM, et al. Peer-led, transformative learning approaches increase classroom engagement in care self-management classes during inpatient rehabilitation of individuals with spinal cord injury. J Spinal Cord Med. 2019;42(3):338–346.
   PubMed Web of Science ®Google Scholar
• Haas B, Price L, Freeman J. Qualitative evaluation of a community peer support service for people with spinal cord injury. Spinal Cord. 2013;51(4):295–299.
   PubMed Web of Science ®Google Scholar
• Lucke KT, Martinez H, Mendez TB, et al. Resolving to go forward: the experience of latino/hispanic family caregivers. Qual Health Res. 2013;23(2):218–230.
   PubMed Web of Science ®Google Scholar
• Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults. Rehabil Nurs. 1993;18(6):375–379.
   PubMedGoogle Scholar
• van Wyk K, Backwell A, Townson A. A narrative literature review to direct spinal cord injury patient education programming. Top Spinal Cord Inj Rehabil. 2015;21(1):49–60.
   PubMedGoogle Scholar
• Cott C. Client-centred rehabilitation: client perspectives. Disabil Rehabil. 2004;26(24):1411–1422.
   PubMed Web of Science ®Google Scholar
• Kacen L, Chaitin J. The times they are a changing’: undertaking qualitative research in ambiguous, conflictual, and changing contexts. Qual Rep. 2006;11(2):209–228.
   Google Scholar
• Kitchin R. The researched opinions on research: disabled people and disability research. Disabil Soc. 2000;15(1):25–47.
   Web of Science ®Google Scholar
• Woo C, Guihan M, Frick C, et al. What’s happening now! telehealth management of spinal cord injury/disorders. J Spinal Cord Med. 2011;34(3):322–331.
   PubMed Web of Science ®Google Scholar