Outpatient and community care for preventing pressure injuries in spinal cord injury. A qualitative study of service users’ and providers’ experience

Spinal Cord volume 58, pages882–891(2020)Cite this article

Subjects

Abstract

Study design

Qualitative exploratory study.

Objectives

Pressure injuries (PIs) are a major secondary condition occurring after spinal cord injuries (SCI). Optimization of outpatient and community care may be a promising approach to better support community-dwelling individuals with SCI in preventing PIs. The aim of this study was to examine the experiences of individuals with SCI, family caregivers and health professionals (HPs) in using or providing outpatient and community services for early treatment and prevention of PIs in SCI.

Setting

Switzerland.

Methods

Semi-structured interviews with a sample of Swiss residents community-dwelling individuals with SCI (n = 20), family caregivers (n = 5) and HPs (n = 22) were analysed using thematic analysis.

Results

General practitioners (GPs), home care providers, SCI-specialized outpatient clinics and an SCI-specialized nursing service are involved in the prevention and early treatment of PIs. Our findings show that the needs of individuals with SCI are not fully met: outpatient and community care is often fragmented, mono-professional and non-specialized, while persons with SCI and HPs prefer coordinated, inter-professional and specialized services for preventing and treating PIs. Our findings also highlight the challenges faced by HPs in providing care to individuals with SCI in the community.

Conclusions

Although there seems to be a gap in service provision, there is the potential for improvement by better integrating the different providers in a network and structuring their collaborations. Concrete suggestions are: systematizing knowledge transfer to home care providers and GPs; redefining the role of involved HPs and individuals with SCI and reinforcing the role of the SCI-specialized nursing service.

Access options

Rent or Buy article

Get time limited or full article access on ReadCube.

from$8.99

Rent or Buy

All prices are NET prices.

Data availability

The transcripts of the interviews analysed in the current study are available from the corresponding author on request. Transcripts will be provided in the original language (mostly German).

References

  1. 1.

    Bickenbach J, Biering-Sørensen F, Knott J, Shakespeare T, Stucki G, Tharion G, et al. Chapter 1: understanding spinal cord injury. In: Bickenbach J, et al. editors. International perspectives on spinal cord injury. Geneva: World Health Organization; 2013.

  2. 2.

    DeVivo M, Farris V. Causes and costs of unplanned hospitalizations among persons with spinal cord injury. Top Spinal Cord Inj Rehabil. 2011;16:53–61.

    Article  Google Scholar 

  3. 3.

    Brinkhof MWG, Al-Khodairy A, Eriks-Hoogland I, Fekete C, Hinrichs T, Hund-Georgiadis M, et al. Health conditions in people with spinal cord injury: contemporary evidence from a population-based community survey in Switzerland. J Rehabil Med. 2016;48:197–209.

    Article  Google Scholar 

  4. 4.

    Regan MA, Teasell RW, Wolfe DL, Keast D, Mortenson WB, Aubut JA. A systematic review of therapeutic interventions for pressure ulcers after spinal cord injury. Arch Phys Med Rehabil. 2009;90:213–31.

    Article  Google Scholar 

  5. 5.

    Marin J, Nixon J, Gorecki C. A systematic review of risk factors for the development and recurrence of pressure ulcers in people with spinal cord injuries. Spinal Cord. 2013;51:522–7.

    CAS  Article  Google Scholar 

  6. 6.

    Gelis A, Dupeyron A, Legros P, Benaim C, Pelissier J, Fattal C. Pressure ulcer risk factors in persons with spinal cord injury part 2: the chronic stage. Spinal Cord. 2009;47:651–61.

    CAS  Article  Google Scholar 

  7. 7.

    Black JM, Edsberg LE, Baharestani MM, Langemo D, Goldberg M, McNichol L, et al. Pressure ulcers: avoidable or unavoidable? Results of the National Pressure Ulcer Advisory Panel Consensus Conference. Ostomy Wound Manag. 2011;57:24–37.

    Google Scholar 

  8. 8.

    Jackson J, Carlson M, Rubayi S, Scott MD, Atkins MS, Blanche EI, et al. Qualitative study of principles pertaining to lifestyle and pressure ulcer risk in adults with spinal cord injury. Disabil Rehabil. 2010;32:567–78.

    Article  Google Scholar 

  9. 9.

    Garber SL, Rintala DH, Hart KA, Fuhrer MJ. Pressure ulcer risk in spinal cord injury: predictors of ulcer status over 3 years. Arch Phys Med Rehabil. 2000;81:465–71.

    CAS  Article  Google Scholar 

  10. 10.

    Fuhrer MJ, Garber SL, Rintala DH, Clearman R, Hart KA. Pressure ulcers in community-resident persons with spinal cord injury: prevalence and risk factors. Arch Phys Med Rehabil. 1993;74:1172–7.

    CAS  PubMed  Google Scholar 

  11. 11.

    Chen Y, Devivo MJ, Jackson AB. Pressure ulcer prevalence in people with spinal cord injury: age-period-duration effects. Arch Phys Med Rehabil. 2005;86:1208–13.

    Article  Google Scholar 

  12. 12.

    Munce SE, Webster F, Fehlings MG, Straus SE, Jang E, Jaglal SB. Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study. BMC Neurol. 2014;14:48.

    Article  Google Scholar 

  13. 13.

    Fogelberg D, Atkins M, Blanche EI, Carlson M, Clark F. Decisions and dilemmas in everyday life: daily use of wheelchairs by individuals with spinal cord injury and the impact on pressure ulcer risk. Top Spinal Cord Inj Rehabil. 2009;15:16–32.

    Article  Google Scholar 

  14. 14.

    McColl MA, Aiken A, McColl A, Sakakibara B, Smith K. Primary care of people with spinal cord injury: scoping review. Can Fam Physician. 2012;58:1207–e635.

    PubMed  PubMed Central  Google Scholar 

  15. 15.

    Ronca E, Scheel-Sailer A, Koch HG, Gemperli A.for the SwiSCI Study Group.Health care utilization in persons with spinal cord injury. Part 2: determinants, geographic variation and comparison with the general population. Spinal Cord. 2017;55:828–33.

    CAS  Article  Google Scholar 

  16. 16.

    Gemperli A, Ronca E, Scheel-Sailer A, Koch HG, Brach M, Trezzini B, et al. Health care utilization in persons with spinal cord injury. Part 1:outpatient services. Spinal Cord. 2017;55:823–7.

    CAS  Article  Google Scholar 

  17. 17.

    Rubin HJ, Rubin IS. Qualitative interviewing: the art of hearing data: Thousand Oaks, CA: Sage; 2011.

  18. 18.

    Clarke V, Braun V. Teaching thematic analysis: overcoming challenges and developing strategies for effective learning. Psychologist. 2013;26:120–3.

    Google Scholar 

  19. 19.

    Lincoln YS, Guba EG. Naturalistic inquiry. Newbury Park, CA: Sage; 1985.

    Google Scholar 

  20. 20.

    Creswell JW. Qualitative, quantitative, and mixed methods approaches. Thousand Oaks, CA: Sage; 2014.

  21. 21.

    Johnson RB. Examining the validity structure of qualitative research. Education. 1997;118:282–92.

    Google Scholar 

  22. 22.

    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;36:572–85.

    Article  Google Scholar 

  23. 23.

    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;87:1516–25.

    Article  Google Scholar 

  24. 24.

    Peytremann-Bridevaux I, Burnand B, Cassis I, Nolte E. Assessing chronic disease management in European health systems: country reports. In: Nolte EKC, editor. Copenhagen, Denmark: European Observatory on Health Systems and Policies; 2015.

  25. 25.

    Delaney C, Apostolidis B, Lachapelle L, Fortinsky R. Home care nurses’ knowledge of evidence-based education topics for management of heart failure. Heart & Lung. 2011;40:285–92.

    Article  Google Scholar 

  26. 26.

    Glajchen M, Bookbinder M. Knowledge and perceived competence of home care nurses in pain management: a national survey. J Pain Symptom Manag. 2001;21:307–16.

    CAS  Article  Google Scholar 

  27. 27.

    Ronca E, Scheel-Sailer A, Koch HG, Metzger S, Gemperli A. Inpatient migration patterns in persons with spinal cord injury: a registry study with hospital discharge data. SSM Popul Health. 2016;2:259–68.

    Article  Google Scholar 

  28. 28.

    Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clin Rehabil. 2001;15:600–6.

    CAS  Article  Google Scholar 

  29. 29.

    Milligan J, Lee J. Enhancing primary care for persons with spinal cord injury: more than improving physical accessibility. J Spinal Cord Med. 2016;39:496–9.

    Article  Google Scholar 

  30. 30.

    Williams S. Improving the continuing care for individuals with spinal cord injuries. Brit J Nurs. 2005;14:161–5.

    Article  Google Scholar 

Download references

Acknowledgements

The authors would like to express their gratitude to the participants for their time and engagement. We also thank Nadja Münzel for her comments on an earlier version of the paper, and Hans Georg Koch for his assistance in the recruitment of study participants. Thank you also to Lisa Adey, who carefully checked the translation of all quotes from the interviews.

Funding

This project was supported by the Suva, the Swiss National Accident Insurance Fund.

Author information

Author notes

  1. These authors contributed equally: Claudia Zanini, Nadia Lustenberger

Affiliations

  1. Swiss Paraplegic Research, Nottwil, Switzerland

    Claudia Zanini, Nadia Lustenberger, Armin Gemperli, Mirjam Brach, Gerold Stucki & Sara Rubinelli

  2. Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland

    Claudia Zanini, Stefan Essig, Armin Gemperli, Mirjam Brach, Gerold Stucki, Sara Rubinelli & Anke Scheel-Sailer

  3. Institut für Hausarztmedizin und Community Care, Lucerne, Switzerland

    Stefan Essig

  4. Swiss Paraplegic Centre, Nottwil, Switzerland

    Anke Scheel-Sailer

Authors
  1. Claudia Zanini
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Nadia Lustenberger
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Stefan Essig
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Armin Gemperli
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Mirjam Brach
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Gerold Stucki
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Sara Rubinelli
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Anke Scheel-Sailer
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

NL contributed to the preparation of the protocol for the Ethics Committee, recruited the participants, conducted and transcribed the interviews. She also contributed to data analysis and publication drafting. CZ was involved in the design of the study, supervised data collection, mainly contributed to data analysis and interpretation of the findings, as well as to drafting, revising and finalizing the manuscript for submission. SE was involved in interpreting the findings, drawing implications for practice as well as in drafting, revising and finalizing the paper for submission. ASS was involved in developing the study protocol, interpreting the findings, drawing implications for practice as well as drafting the paper. GS, SR and MB developed the study protocol, provided feedback and approved the manuscript draft. AG provided feedback on the manuscript draft. GS, MB, AG, ASS and SE were also part of the Expert Advisory Group for this project.

Corresponding author

Correspondence to Claudia Zanini.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethics

We certify that all applicable institutional and governmental regulations concerning the ethical treatment of human volunteers were followed throughout the study. The study obtained ethical approval from the regional committee of north-western and central Switzerland (Ethikkommission Nordwest- und Zentralschweiz, reference number EKNZ 2015-311).

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Zanini, C., Lustenberger, N., Essig, S. et al. Outpatient and community care for preventing pressure injuries in spinal cord injury. A qualitative study of service users’ and providers’ experience. Spinal Cord 58, 882–891 (2020). https://doi.org/10.1038/s41393-020-0444-4

Download citation

Further reading

Search

Quick links