“She didn't know what to do with me”: The experience of seeking community mental health support after spinal cord injury

Lists

Tools

Finlay, K. ORCID: https://orcid.org/0000-0002-8997-2652, Brook-Rowland, P. and Tilley, M. (2025) “She didn't know what to do with me”: The experience of seeking community mental health support after spinal cord injury. The Journal of Spinal Cord Medicine. ISSN 2045-7723 (In Press)

Text - Accepted Version
· Restricted to Repository staff only
· The Copyright of this document has not been checked yet. This may affect its availability.
4MB

It is advisable to refer to the publisher's version if you intend to cite from this work. See Guidance on citing.

Abstract/Summary

Context/Objectives: Adults with spinal cord injury in the UK do not currently have specialised access to SCI-informed community-based mental health support, despite their elevated risk of mental health decline. The lack of SCI-informed therapeutic support may increase the likelihood of mental health treatment failure. This study sought to qualitatively explore the experience of accessing, or attempting to access, generic (non-SCI-informed) mental health support when living with a spinal cord injury. Design: Qualitative, exploratory study using thematic analysis. Setting: Community-based sample in the UK. Participants: Twenty people with spinal cord injury (10 female, 10 male) were recruited from a UK-based, SCI-specific support charity. Interventions: Semi-structured interviews (mean length = 83 minutes, SD = 13.5 minutes). Outcome Measures: 9-item semi-structured interview schedule, addressing mental health service use. Results: Three themes were identified: (1) Therapeutic timeliness; (2) A disconnect with standard services; and (3) Successful systems for support. The inpatient-to-outpatient transition represents a critical time window during which mental health is vulnerable to decline, requiring responsive access to mental health services throughout the lifespan. The lack of tailored, SCI-informed mental health services inhibits therapeutic engagement and limits perceived treatment outcomes. Conclusions: Without SCI-informed care, generic mental health service referrals risk early termination of support and treatment disengagement. Mental health treatment withdrawal is initiated by both patients and their allocated healthcare professionals. This study demonstrates an evident need to develop programmes for people with SCI to train as (peer) mental health practitioners, and to develop SCI-specific training modules for mental health care practitioners.

Item Type:	Article
Refereed:	Yes
Divisions:	Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
ID Code:	121619
Uncontrolled Keywords:	Long term conditions; Depression; Anxiety; PTSD; IAPT; Treatment failure
Publisher:	Taylor & Francis

Deposit Details

References

1. Aaby A, Ravn SL, Kasch H, Andersen TE. The associations of acceptance with quality of life and mental health following spinal cord injury: a systematic review. Spinal Cord. 2020 Feb;58(2):130–48. 2. Eckert MJ, Martin MJ. Trauma: Spinal Cord Injury. Surgical Clinics of North America. 2017 Oct 1;97(5):1031–45. 3. Heinemann AW, Wilson CS, Huston T, Koval J, Gordon S, Gassaway J, et al. Relationship of psychology inpatient rehabilitation services and patient characteristics to outcomes following spinal cord injury: The SCIRehab Project. J Spinal Cord Med. 2012 Nov;35(6):578–92. 4. Kuiper H, van Leeuwen CCM, Kopsky DJ, Stolwijk-Swüste JM, Post MWM. Post-traumatic stress disorder symptoms and pain intensity in persons with spinal cord injury. Spinal Cord. 2021 Mar;59(3):328–35. 5. Kunz S, Stadler C, Peter C, for the SwiSCI Study Group. Longitudinal course and predictors of posttraumatic stress symptoms after spinal cord injury. Psychology & Health. 2020 Oct 5;1–20. 6. Le J, Dorstyn D. Anxiety prevalence following spinal cord injury: a meta-analysis. Spinal Cord. 2016 Aug;54(8):570–8. 7. Williams R, Murray A. Prevalence of Depression After Spinal Cord Injury: A Meta-Analysis. Archives of Physical Medicine and Rehabilitation. 2015 Jan 1;96(1):133–40. 8. Craig A, Nicholson Perry K, Guest R, Tran Y, Middleton J. Adjustment following chronic spinal cord injury: Determining factors that contribute to social participation. Br J Health Psychol. 2015 Nov;20(4):807–23. 9. Tchajkova N, Ethans K, Smith SD. Inside the lived perspective of life after spinal cord injury: a qualitative study of the desire to live and not live, including with assisted dying. Spinal Cord. 2021 Mar 31;1–8. 10. Calderone A, Cardile D, De Luca R, Quartarone A, Corallo F, Calabrò RS. Cognitive, behavioral and psychiatric symptoms in patients with spinal cord injury: a scoping review. Front Psychiatry [Internet]. 2024 Mar 20 [cited 2024 May 22];15. Available from: https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1369714/full 11. Carrard V, Kunz S, Peter C. Mental health, quality of life, self-efficacy, and social support of individuals living with spinal cord injury in Switzerland compared to that of the general population. Spinal Cord. 2021 Apr;59(4):398–409. 12. Hoffman JM, Bombardier CH, Graves DE, Kalpakjian CZ, Krause JS. A Longitudinal Study of Depression From 1 to 5 Years After Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation. 2011 Mar 1;92(3):411–8. 13. NICE. NG11: Rehabilitation after traumatic injury [Internet]. NICE; 2022. Available from: https://www.nice.org.uk/guidance/ng211/resources/rehabilitation-after-traumatic-injury-pdf-66143770162117 14. NHS. NHS England » Spinal cord injury services (all ages) [Internet]. 2020 [cited 2021 Sep 12]. Available from: https://www.england.nhs.uk/publication/spinal-cord-injury-services-all-ages/ 15. Fann JR, Bombardier CH, Richards JS, Tate DG, Wilson CS, Temkin N. Depression After Spinal Cord Injury: Comorbidities, Mental Health Service Use, and Adequacy of Treatment. Archives of Physical Medicine and Rehabilitation. 2011 Mar 1;92(3):352–60. 16. Bombardier CH, Azuero CB, Fann JR, Kautz DD, Richards JS, Sabharwal S. Management of Mental Health Disorders, Substance Use Disorders, and Suicide in Adults with Spinal Cord Injury: Clinical Practice Guideline for Healthcare Providers. Topics in Spinal Cord Injury Rehabilitation. 2021 May 24;27(2):152–224. 17. Delgadillo J, Dawson A, Gilbody S, Böhnke JR. Impact of long-term medical conditions on the outcomes of psychological therapy for depression and anxiety. The British Journal of Psychiatry. 2017 Jan;210(1):47–53. 18. Geraghty K, Scott MJ. Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified. BMC Psychology. 2020 Feb 5;8(1):13. 19. Scott MJ. Improving Access to Psychological Therapies (IAPT) - The Need for Radical Reform. J Health Psychol. 2018 Aug 1;23(9):1136–47. 20. Reyes V, Bogumil E, Welch LE. The Living Codebook: Documenting the Process of Qualitative Data Analysis. Sociological Methods & Research. 2021 Feb 8;0049124120986185. 21. Roberts K, Dowell A, Nie JB. Attempting rigour and replicability in thematic analysis of qualitative research data; a case study of codebook development. BMC Medical Research Methodology. 2019 Mar 28;19(1):66. 22. Braun V, Clarke V. What can “thematic analysis” offer health and wellbeing researchers? Int J Qual Stud Health Well-being [Internet]. 2014 Oct 16 [cited 2021 Mar 14];9. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4201665/ 23. Ando H, Cousins R, Young C. Achieving Saturation in Thematic Analysis: Development and Refinement of a Codebook,,. Comprehensive Psychology. 2014 Jan 1;3:03.CP.3.4. 24. Luiggi-Hernandez JG, Woo J, Hamm M, Greco CM, Weiner DK, Morone NE. Mindfulness for Chronic Low Back Pain: A Qualitative Analysis. Pain Medicine. 2018 Nov 1;19(11):2138–45. 25. Saldana J. The Coding Manual for Qualitative Researchers. The Coding Manual for Qualitative Researchers. 2021;1–440. 26. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007 Dec 1;19(6):349–57. 27. Hall AG, Karabukayeva A, Rainey C, Kelly RJ, Patterson J, Wade J, et al. Perspectives on life following a traumatic spinal cord injury. Disability and Health Journal. 2021 Jul;14(3):101067. 28. Dickson A, Ward R, O’Brien G, Allan D, O’Carroll R. Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysis. Psychology, Health & Medicine. 2011 Aug;16(4):463. 29. Kendall M, Ungerer G, Dorsett P. Bridging the gap: Transitional rehabilitation services for people with spinal cord injury. Disability and Rehabilitation. 2003 Jan 1;25(17):1008–15. 30. Clifton S. Grieving my broken body: an autoethnographic account of spinal cord injury as an experience of grief. Disability and Rehabilitation. 2014 Oct;36(21):1823–9. 31. Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud. 1999;23(3):197–224. 32. Panchal R, Rich B, Rowland C, Ryan T, Watts S. The successful impact of adapting CBT in IAPT for people with complex long-term physical health conditions. tCBT. 2020;13:e36. 33. Martin C, Iqbal Z, Airey ND, Marks L. Improving Access to Psychological Therapies (IAPT) has potential but is not sufficient: How can it better meet the range of primary care mental health needs? British Journal of Clinical Psychology. 2022;61(1):157–74. 34. Toffolutti V, McKee M, Clark DM, Stuckler D. The Economic and Mental Health Impact of IAPT: Pragmatic Trial in Three English Regions. European Journal of Public Health [Internet]. 2019 Nov 1 [cited 2022 Sep 25];29(4). Available from: https://doi.org/10.1093/eurpub/ckz185.047 35. Welk B, Myers JB, Kennelly M, McKibbon M, Watson J, Gervais K. A qualitative assessment of psychosocial aspects that play a role in bladder management after spinal cord injury. Spinal Cord. 2021 Sep;59(9):978–86. 36. Rocchi MA, Shi Z, Shaw RB, McBride CB, Sweet SN. Identifying the outcomes of participating in peer mentorship for adults living with spinal cord injury: a qualitative meta-synthesis. Psychology & Health. 2021 Mar 23;1–22. 37. Huang G, Lin BL, Hu JH, Qiu FH, Zhang WY, Zhang ZL, et al. Effect of acceptance and commitment therapy on rehabilitation patients with spinal cord injury. Contemporary Clinical Trials Communications. 2021 Dec 1;24:100778.

University Staff: Request a correction | Centaur Editors: Update this record

University of Reading

CentAUR: Central Archive at the University of Reading

Accessibility navigation

“She didn't know what to do with me”: The experience of seeking community mental health support after spinal cord injury

Abstract/Summary

Page navigation

See also

Footer navigation