Skip to main navigation menu Skip to main content Skip to site footer
##common.pageHeaderLogo.altText##

Original article

Vol. 149 No. 2526 (2019)

Challenges to building and maintaining partnership in the prevention and treatment of pressure injuries in spinal cord injury: a qualitative study of health professionals’ views

  • Claudia Zanini
  • Sara Rubinelli
  • Nadia Lustenberger
  • Hans Georg Koch
  • Anke Scheel-Sailer
  • Mirjam Brach
DOI
https://doi.org/10.4414/smw.2019.20086
Cite this as:
Swiss Med Wkly. 2019;149:w20086
Published
30.06.2019

Summary

AIMS OF THE STUDY

The effective management of spinal cord injury (SCI) requires partnership between people with SCI and health professionals (HPs). This paper identifies HPs’ perceived challenges in building and maintaining this partnership, with a specific focus on how people with SCI and HPs collaborate in the prevention and treatment of pressure injuries in SCI.

DESIGN

This study has a qualitative and explorative design. Data were collected through semi-structured interviews and analysed following the principles of thematic analysis.

POPULATION AND SETTING

The study population consisted of a purposive sample of HPs (n = 26) working in inpatient and outpatient care in Switzerland with experience in the care of people with SCI.

RESULTS

The analysis identified three main challenges: defining responsibilities and expectations, negotiating priorities and establishing and strengthening trust and respect. The HPs argue that the prevention of pressure injuries and self-management are mainly the responsibility of the person with SCI. The HPs have, however, the responsibility to empower, guide, and support persons with SCI in self-management by educating and motivating them.

CONCLUSION

Building and maintaining a partnership with individuals with SCI to prevent and treat pressure injuries is crucial, but it is not an easy task for HPs. Specific communication skills can help HPs and patients find personalised solutions that take into account the patients’ expertise and preferences. Additionally, the healthcare system must develop solutions that go beyond personal partnership to better integrate the prevention and treatment of pressure injuries into the lifelong self-management of SCI. Assistive technologies, such as mobile technology, might help in this endeavour.

References

  1. World Health Organization, International Spinal Cord Injury Society. International Perspectives on Spinal Cord Injury (IPSCI) 2013. 2014.
  2. Taylor SJC, Pinnock H, Epiphaniou E, Pearce G, Parke HL, Schwappach A, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic Review of Self-Management Support for long-term conditions. Health Serv Deliv Res. 2014;2(53):1–580. doi:.https://doi.org/10.3310/hsdr02530
  3. Coulter A. Paternalism or partnership? Patients have grown up-and there’s no going back. BMJ. 1999;319(7212):719–20. doi:.https://doi.org/10.1136/bmj.319.7212.719
  4. Karazivan P, Dumez V, Flora L, Pomey MP, Del Grande C, Ghadiri DP, et al. The patient-as-partner approach in health care: a conceptual framework for a necessary transition. Acad Med. 2015;90(4):437–41. doi:.https://doi.org/10.1097/ACM.0000000000000603
  5. Holman H, Lorig K. Patients as partners in managing chronic disease. Partnership is a prerequisite for effective and efficient health care. BMJ. 2000;320(7234):526–7. doi:.https://doi.org/10.1136/bmj.320.7234.526
  6. Clark NM, Gong M, Kaciroti N. A model of self-regulation for control of chronic disease. Health Educ Behav. 2014;41(5):499–508. doi:.https://doi.org/10.1177/1090198114547701
  7. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health Aff (Millwood). 2001;20(6):64–78. doi:.https://doi.org/10.1377/hlthaff.20.6.64
  8. Balint J, Shelton W. Regaining the initiative. Forging a new model of the patient-physician relationship. JAMA. 1996;275(11):887–91. doi:.https://doi.org/10.1001/jama.1996.03530350069045
  9. Tattersall RL. The expert patient: a new approach to chronic disease management for the twenty-first century. Clin Med (Lond). 2002;2(3):227–9. doi:.https://doi.org/10.7861/clinmedicine.2-3-227
  10. Hart JT. Clinical and economic consequences of patients as producers. J Public Health Med. 1995;17(4):383–6.
  11. Fu Y, McNichol E, Marczewski K, Closs SJ. Patient-professional partnerships and chronic back pain self-management: a qualitative systematic review and synthesis. Health Soc Care Community. 2016;24(3):247–59. doi:.https://doi.org/10.1111/hsc.12223
  12. Dwarswaard J, Bakker EJ, van Staa A, Boeije HR. Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies. Health Expect. 2016;19(2):194–208. doi:.https://doi.org/10.1111/hex.12346
  13. Furler J, Walker C, Blackberry I, Dunning T, Sulaiman N, Dunbar J, et al. The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes. BMC Health Serv Res. 2008;8(1):214. doi:.https://doi.org/10.1186/1472-6963-8-214
  14. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44(5):681–92. doi:.https://doi.org/10.1016/S0277-9536(96)00221-3
  15. Towle A, Godolphin W, Greenhalgh T, Gambrill J. Framework for teaching and learning informed shared decision making. BMJ. 1999;319(7212):766–71. doi:.https://doi.org/10.1136/bmj.319.7212.766
  16. Speedling EJ, Rose DN. Building an effective doctor-patient relationship: from patient satisfaction to patient participation. Soc Sci Med. 1985;21(2):115–20. doi:.https://doi.org/10.1016/0277-9536(85)90079-6
  17. Ong LM, de Haes JC, Hoos AM, Lammes FB. Doctor-patient communication: a review of the literature. Soc Sci Med. 1995;40(7):903–18. doi:.https://doi.org/10.1016/0277-9536(94)00155-M
  18. Coulter A, Collins A. Making shared decision-making a reality. No decisions about me, without me. London: The King's Fund, 2011.
  19. de Ridder DT, Theunissen NC, van Dulmen SM. Does training general practitioners to elicit patients’ illness representations and action plans influence their communication as a whole? Patient Educ Couns. 2007;66(3):327–36. doi:.https://doi.org/10.1016/j.pec.2007.01.006
  20. Holzmueller CG, Wu AW, Pronovost PJ. A framework for encouraging patient engagement in medical decision making. J Patient Saf. 2012;8(4):161–4. Published online August 16, 2012. doi:.https://doi.org/10.1097/PTS.0b013e318267c56e
  21. Kennedy A, Rogers A, Bowen R, Lee V, Blakeman T, Gardner C, et al. Implementing, embedding and integrating self-management support tools for people with long-term conditions in primary care nursing: a qualitative study. Int J Nurs Stud. 2014;51(8):1103–13. doi:.https://doi.org/10.1016/j.ijnurstu.2013.11.008
  22. Sykes S, Wills J, Rowlands G, Popple K. Understanding critical health literacy: a concept analysis. BMC Public Health. 2013;13:150. doi:.https://doi.org/10.1186/1471-2458-13-150
  23. Maguire P, Pitceathly C. Key communication skills and how to acquire them. BMJ. 2002;325(7366):697–700. doi:.https://doi.org/10.1136/bmj.325.7366.697
  24. Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(3):291–309. doi:.https://doi.org/10.1016/j.pec.2013.10.031
  25. Joseph-Williams N, Edwards A, Elwyn G. Power imbalance prevents shared decision making. BMJ. 2014;348(may14 7):g3178. doi:.https://doi.org/10.1136/bmj.g3178
  26. Bernabeo E, Holmboe ES. Patients, providers, and systems need to acquire a specific set of competencies to achieve truly patient-centered care. Health Aff (Millwood). 2013;32(2):250–8. doi:.https://doi.org/10.1377/hlthaff.2012.1120
  27. Frosch DL, May SG, Rendle KA, Tietbohl C, Elwyn G. Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Aff (Millwood). 2012;31(5):1030–8. doi:.https://doi.org/10.1377/hlthaff.2011.0576
  28. Kennedy A, Rogers A, Bower P. Support for self care for patients with chronic disease. BMJ. 2007;335(7627):968–70. doi:.https://doi.org/10.1136/bmj.39372.540903.94
  29. Peters S, Rogers A, Salmon P, Gask L, Dowrick C, Towey M, et al. What do patients choose to tell their doctors? Qualitative analysis of potential barriers to reattributing medically unexplained symptoms. J Gen Intern Med. 2009;24(4):443–9. doi:.https://doi.org/10.1007/s11606-008-0872-x
  30. DeVivo M, Farris V. Causes and Costs of Unplanned Hospitalizations Among Persons with Spinal Cord Injury. Top Spinal Cord Inj Rehabil. 2011;16(4):53–61. doi:.https://doi.org/10.1310/sci1604-53
  31. Brinkhof MW, Al-Khodairy A, Eriks-Hoogland I, Fekete C, Hinrichs T, Hund-Georgiadis M, et al.; SwiSCI Study Group. Health conditions in people with spinal cord injury: Contemporary evidence from a population-based community survey in Switzerland. J Rehabil Med. 2016;48(2):197–209. doi:.https://doi.org/10.2340/16501977-2039
  32. Scheel-Sailer A, Wyss A, Boldt C, Post MW, Lay V. Prevalence, location, grade of pressure ulcers and association with specific patient characteristics in adult spinal cord injury patients during the hospital stay: a prospective cohort study. Spinal Cord. 2013;51(11):828–33. doi:.https://doi.org/10.1038/sc.2013.91
  33. Richards S, Waites K, Chen Y, Kogos S, Schmitt MM. The Epidemiology of Secondary Conditions Following Spinal Cord Injury. Top Spinal Cord Inj Rehabil. 2004;10(1):15–29. doi:.https://doi.org/10.1310/YXM3-85YW-8VUG-NNUR
  34. Langemo DK, Melland H, Hanson D, Olson B, Hunter S. The lived experience of having a pressure ulcer: a qualitative analysis. Adv Skin Wound Care. 2000;13(5):225–35.
  35. Jones ML, Mathewson CS, Adkins VK, Ayllon T. Use of behavioral contingencies to promote prevention of recurrent pressure ulcers. Arch Phys Med Rehabil. 2003;84(6):796–802. doi:.https://doi.org/10.1016/S0003-9993(02)04943-2
  36. Clark FA, Jackson JM, Scott MD, Carlson ME, Atkins MS, Uhles-Tanaka D, et al. Data-based models of how pressure ulcers develop in daily-living contexts of adults with spinal cord injury. Arch Phys Med Rehabil. 2006;87(11):1516–25. doi:.https://doi.org/10.1016/j.apmr.2006.08.329
  37. Bennett G, Dealey C, Posnett J. The cost of pressure ulcers in the UK. Age Ageing. 2004;33(3):230–5. doi:.https://doi.org/10.1093/ageing/afh086
  38. Brem H, Maggi J, Nierman D, Rolnitzky L, Bell D, Rennert R, et al. High cost of stage IV pressure ulcers. Am J Surg. 2010;200(4):473–7. doi:.https://doi.org/10.1016/j.amjsurg.2009.12.021
  39. Zanini C, Brach M, Lustenberger N, Scheel-Sailer A, Koch HG, Stucki G, et al. Engaging in the prevention of pressure injuries in spinal cord injury: A qualitative study of community-dwelling individuals’ different styles of prevention in Switzerland. J Spinal Cord Med. 2018;12:1–10. doi:.https://doi.org/10.1080/10790268.2018.1543094
  40. Patton MQ. Qualitative evaluation and research methods. 2nd edition ed. Thousand Oaks, CA, US: Sage 1990.
  41. Robinson OC. Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide. Qual Res Psychol. 2014;11(1):25–41. doi:.https://doi.org/10.1080/14780887.2013.801543
  42. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research. Adm Policy Ment Health. 2015;42(5):533–44. doi:.https://doi.org/10.1007/s10488-013-0528-y
  43. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi:.https://doi.org/10.1191/1478088706qp063oa
  44. Zanini C, Brach M, Lustenberger N, Scheel-Sailer A, Koch HG, Stucki G, et al. Engaging in the prevention of pressure injuries in spinal cord injury: A qualitative study of community-dwelling individuals’ different styles of prevention in Switzerland. J Spinal Cord Med. 2018;1–10; Epub ahead of print. doi:.https://doi.org/10.1080/10790268.2018.1543094
  45. Rubinelli S, Zanini C, Lustenberger N, Koch H, Brach M, Stucki G, et al. Understanding and acting on pressure ulcers in spinal cord injury from the health sciences perspective. In progress.
  46. Kruger EA, Pires M, Ngann Y, Sterling M, Rubayi S. Comprehensive management of pressure ulcers in spinal cord injury: current concepts and future trends. J Spinal Cord Med. 2013;36(6):572–85. doi:.https://doi.org/10.1179/2045772313Y.0000000093
  47. Carpenter C. The experience of spinal cord injury: the individual’s perspective--implications for rehabilitation practice. Phys Ther. 1994;74(7):614–28, discussion 628–9. Published online July 01, 1994. doi:.https://doi.org/10.1093/ptj/74.7.614
  48. Pellatt GC. Patient-professional partnership in spinal cord injury rehabilitation. Br J Nurs. 2004;13(16):948–53. doi:.https://doi.org/10.12968/bjon.2004.13.16.15966
  49. Sand A, Karlberg I, Kreuter M. Spinal cord injured persons’ conceptions of hospital care, rehabilitation, and a new life situation. Scand J Occup Ther. 2006;13(3):183–92. Published online October 18, 2006. doi:.https://doi.org/10.1080/11038120500542187
  50. Lindberg J, Kreuter M, Taft C, Person LO. Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury. Spinal Cord. 2013;51(11):834–7. doi:.https://doi.org/10.1038/sc.2013.97
  51. Lucke KT. Knowledge acquisition and decision-making: spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nurs. 1997;14(3):87–95.
  52. Garrino L, Curto N, Decorte R, Felisi N, Matta E, Gregorino S, et al. Towards personalized care for persons with spinal cord injury: a study on patients’ perceptions. J Spinal Cord Med. 2011;34(1):67–75. doi:.https://doi.org/10.1179/107902610x12883422813741
  53. Scheel-Sailer A, Post MW, Michel F, Weidmann-Hügle T, Baumann Hölzle R. Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury-A qualitative interview-based study. Health Expect. 2017;20(5):1133–42. doi:.https://doi.org/10.1111/hex.12559
  54. Taylor K. Paternalism, participation and partnership - the evolution of patient centeredness in the consultation. Patient Educ Couns. 2009;74(2):150–5. doi:.https://doi.org/10.1016/j.pec.2008.08.017
  55. Parsons S, Harding G, Breen A, Foster N, Pincus T, Vogel S, et al. The influence of patients’ and primary care practitioners’ beliefs and expectations about chronic musculoskeletal pain on the process of care: a systematic review of qualitative studies. Clin J Pain. 2007;23(1):91–8. doi:.https://doi.org/10.1097/01.ajp.0000210947.34676.34
  56. Jeffrey JE, Foster NE. A qualitative investigation of physical therapists’ experiences and feelings of managing patients with nonspecific low back pain. Phys Ther. 2012;92(2):266–78. doi:.https://doi.org/10.2522/ptj.20100416
  57. Lauer AK, Lauer DA. The good doctor: more than medical knowledge & surgical skill. Ann Eye Sci. 2017;2(7):36.
  58. Whalley Hammell K. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord. 2007;45(4):260–74. doi:.https://doi.org/10.1038/sj.sc.3102034
  59. Roter DL, Stewart M, Putnam SM, Lipkin M, Jr, Stiles W, Inui TS. Communication patterns of primary care physicians. JAMA. 1997;277(4):350–6. doi:.https://doi.org/10.1001/jama.1997.03540280088045
  60. von Fragstein M, Silverman J, Cushing A, Quilligan S, Salisbury H, Wiskin C ; UK Council for Clinical Communication Skills Teaching in Undergraduate Medical Education. UK consensus statement on the content of communication curricula in undergraduate medical education. Med Educ. 2008;42(11):1100–7. doi:.https://doi.org/10.1111/j.1365-2923.2008.03137.x
  61. Rubinelli S, Zanini C. Teaching argumentation theory to doctors: Why and what. Journal of Argumentation in Context. 2012;1(1):66–80. doi:.https://doi.org/10.1075/jaic.1.1.06rub
  62. Zanini C, Rubinelli S. Using argumentation theory to identify the communication challenges of shared decision-making when the doctor and the patient have a difference of opinion. J Public Health Res. 2012;1(2):e26. doi:.https://doi.org/10.4081/jphr.2012.e26
  63. Rubinelli S, Schulz PJ. “Let Me Tell You Why!”. When argumentation in doctor–patient interaction makes a difference. Argumentation. 2006;20(3):353–75. doi:.https://doi.org/10.1007/s10503-006-9014-y
  64. Schulz PJ, Rubinelli S. Arguing ‘for’ the Patient: Informed Consent and Strategic Maneuvering in Doctor–Patient Interaction. Argumentation. 2008;22(3):423–32. doi:.https://doi.org/10.1007/s10503-008-9086-y
  65. Haq C, Steele DJ, Marchand L, Seibert C, Brody D. Integrating the art and science of medical practice: innovations in teaching medical communication skills. Fam Med. 2004;36(50, Suppl):S43–50.
  66. Dwarswaard J, van de Bovenkamp H. Self-management support: A qualitative study of ethical dilemmas experienced by nurses. Patient Educ Couns. 2015;98(9):1131–6. doi:.https://doi.org/10.1016/j.pec.2015.05.017
  67. Jerant AF, von Friederichs-Fitzwater MM, Moore M. Patients’ perceived barriers to active self-management of chronic conditions. Patient Educ Couns. 2005;57(3):300–7. doi:.https://doi.org/10.1016/j.pec.2004.08.004
  68. Audulv A, Asplund K, Norbergh K-G. Who’s in charge? The role of responsibility attribution in self-management among people with chronic illness. Patient Educ Couns. 2010;81(1):94–100. doi:.https://doi.org/10.1016/j.pec.2009.12.007
  69. Kielmann T, Huby G, Powell A, Sheikh A, Price D, Williams S, et al. From support to boundary: a qualitative study of the border between self-care and professional care. Patient Educ Couns. 2010;79(1):55–61. doi:.https://doi.org/10.1016/j.pec.2009.07.015
  70. Palmadottir G. Client-Therapist Relationships: Experiences of Occupational Therapy Clients in Rehabilitation. Br J Occup Ther. 2006;69(9):394–401. doi:.https://doi.org/10.1177/030802260606900902
  71. Jones F, Livingstone E, Hawkes L. ‘Getting the balance between encouragement and taking over’: reflections on using a new stroke self-management programme. Physiother Res Int. 2013;18(2):91–9. doi:.https://doi.org/10.1002/pri.1531
  72. Robinson A, Thomson R. Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care. 2001;10(1, Suppl 1):i34–8. doi:.https://doi.org/10.1136/qhc.0100034
  73. Rogers A, Entwistle V, Pencheon D. A patient led NHS: managing demand at the interface between lay and primary care. BMJ. 1998;316(7147):1816–9. doi:.https://doi.org/10.1136/bmj.316.7147.1816
  74. Mudge S, Kayes N, McPherson K. Who is in control? Clinicians’ view on their role in self-management approaches: a qualitative metasynthesis. BMJ Open. 2015;5(5):e007413. doi:.https://doi.org/10.1136/bmjopen-2014-007413
  75. Kuipers K, McKenna K. Upper Limb Rehabilitation following Brain Injury: Complex, Multifaceted and Challenging. Br J Occup Ther. 2009;72(1):20–8. doi:.https://doi.org/10.1177/030802260907200105
  76. Lawn S, McMillan J, Pulvirenti M. Chronic condition self-management: expectations of responsibility. Patient Educ Couns. 2011;84(2):e5–8. doi:.https://doi.org/10.1016/j.pec.2010.07.008
  77. Floríndez LI, Carlson ME, Pyatak E, Blanchard J, Cogan AM, Sleight AG, et al. A qualitative analysis of pressure injury development among medically underserved adults with spinal cord injury. Disabil Rehabil. 2019;8:1–7. doi:.https://doi.org/10.1080/09638288.2018.1552328
  78. Guihan M, Bombardier CH. Potentially modifiable risk factors among veterans with spinal cord injury hospitalized for severe pressure ulcers: a descriptive study. J Spinal Cord Med. 2012;35(4):240–50. doi:.https://doi.org/10.1179/2045772312Y.0000000016
  79. Tung JY, Stead B, Mann W, Ba’Pham, Popovic MR. Assistive technologies for self-managed pressure ulcer prevention in spinal cord injury: a scoping review. J Rehabil Res Dev. 2015;52(2):131–46. doi:.https://doi.org/10.1682/JRRD.2014.02.0064
  80. Anderson RM, Funnell MM. Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm. Patient Educ Couns. 2005;57(2):153–7. doi:.https://doi.org/10.1016/j.pec.2004.05.008
  81. Gélis A, Dupeyron A, Legros P, Benaïm C, Pelissier J, Fattal C. Pressure ulcer risk factors in persons with spinal cord injury part 2: the chronic stage. Spinal Cord. 2009;47(9):651–61. doi:.https://doi.org/10.1038/sc.2009.32
  82. Lemmer DP, Alvarado N, Henzel K, Richmond MA, McDaniel J, Graebert J, et al. What Lies Beneath: Why Some Pressure Injuries May Be Unpreventable for Individuals With Spinal Cord Injury. Arch Phys Med Rehabil. 2019;100(6):1042–9.
  83. Atkinson RA, Cullum NA. Interventions for pressure ulcers: a summary of evidence for prevention and treatment. Spinal Cord. 2018;56(3):186–98. doi:.https://doi.org/10.1038/s41393-017-0054-y
  84. Cogan AM, Blanchard J, Garber SL, Vigen CL, Carlson M, Clark FA. Systematic review of behavioral and educational interventions to prevent pressure ulcers in adults with spinal cord injury. Clin Rehabil. 2017;31(7):871–80. doi:.https://doi.org/10.1177/0269215516660855
  85. Baron JS, Sullivan KJ, Swaine JM, Aspinall A, Jaglal S, Presseau J, et al. Self-management interventions for skin care in people with a spinal cord injury: part 1-a systematic review of intervention content and effectiveness. Spinal Cord. 2018;56(9):823–36.
  86. Groah SL, Schladen M, Pineda CG, Hsieh CH. Prevention of Pressure Ulcers Among People With Spinal Cord Injury: A Systematic Review. PM R. 2015;7(6):613–36. doi:.https://doi.org/10.1016/j.pmrj.2014.11.014
  87. Krause JS, Broderick L. Patterns of recurrent pressure ulcers after spinal cord injury: identification of risk and protective factors 5 or more years after onset. Arch Phys Med Rehabil. 2004;85(8):1257–64. doi:.https://doi.org/10.1016/j.apmr.2003.08.108

Most read articles by the same author(s)