Metastatic spinal cord compression (MSCC) is characterised by poor prognosis and serious physical disability. Patients have complex rehabilitation needs, but the evidence on rehabilitation is sparse. This study aimed to ascertain the constructions placed upon disability by patients with MSCC. The method consisted of a series of nine process-tracing, longitudinal case studies, involving 58 interviews with 9 patients, 6 carers and 29 staff in one National Health Service region. A context-mechanism-outcome configuration was adopted as a conceptual basis for data collection, together with a constant comparative method of data analysis. Patients’ orientation to disability incorporated two apparently inconsistent attitudes. Patients acknowledged that their situation had changed and that their future plans would need to accommodate altered circumstances. However, they also resisted the idea of themselves as disabled, wanting to retain an image of themselves as resourceful and resilient. Patients used a number of strategies to reconcile the tension between these two positions. The illusions incorporated into the ‘failure to acknowledge’ pole of this orientation are self-protective and, like other positive illusions, have psychological benefits. Providing effective and acceptable support to patients living with disability relies on professional responses that are able to sustain patients’ sense of their own competence.
1 National Institute of Clinical Excellence. Improving supportive and palliative care for adults with cancer: the manual.London: National Institute for Clinical Excellence; 2004.
2.
2 Levack P Graham J Collie D Grant R Kidd J Kunkler I . Don’t wait for a sensory level – listen to the symptoms: a prospective audit of the delays in diagnosis of malignant cord compression. Clin Oncol2002; 14: 472–480.
3.
3 Loblaw DA Laperriere NJ . Emergency treatment of malignant extradural spinal cord compression: an evidence-based guideline. J Clin Oncol1998; 16: 1613–1624.
4.
4 Kirshblum S O’Dell MW Ho C Barr K . Rehabilitation of persons with central nervous system tumours. Cancer2001; 92(Suppl): 1029–1038.
5.
5 Cowap J Hardy JR A’Hern R . Outcome of malignant spinal cord compression at a cancer centre: implications for palliative care services. J Pain Symptom Manage2000; 19: 257–264.
6.
6 McKinley WO Seel RT Hardman JT . Nontraumatic spinal cord injury: incidence, epidemiology and functional outcome. Arch Phys Med Rehabil1999; 80: 619–623.
7.
7 Sackley C Wade DT Mant D Atkinson JC Yudkin P Cardoso K . Cluster randomized pilot controlled trial of an occupational therapy intervention for residents with stroke in UK care homes. Stroke2006; 37: 2336–2341.
8.
8 Schönherr MC Groothoff JW Mulder GA Eisma WA . Functional outcome of patients with spinal cord injury: rehabilitation outcome study. Clin Rehabil1999; 13: 457–463.
9.
9 Walker MF Gladman JRF Lincoln NB Siemonsma P Whiteley T . Occupational therapy for stroke patients not admitted to hospital: a randomised controlled trial. Lancet1999; 354: 278–280.
10.
10 Sørensen PS Børgesen SE Rohde K Rasmusson B Bach F Boge-Rasmusson T . Metastatic epidural spinal cord compression: results of treatment and survival. Cancer1990; 65: 1502–1508.
11.
11 Garrard P Farnham C Thompson AJ Playford ED . Rehabilitation of the cancer patient: experience in a neurological unit. Neurorehabil Neural Repair2004; 18: 76–79.
12.
12 Parsch D Mikut R Abel R . Postacute management of patients with spinal cord injury due to metastatic tumour disease: survival and efficacy of rehabilitation. Spinal Cord2003; 41: 205–210.
13.
13 McKinley WO Seel RT Gadi RK Tewksbury MA . Nontraumatic vs traumatic spinal cord injury: a rehabilitation outcome comparison. Am J Phys Med Rehabil2001; 80: 693–699.
14.
14 Hicks F Thom V Alison D Corcoran G . Spinal cord compression: the hospice perspective. J Palliat Care1993; 9: 9–13.
15.
15 Robillard AB . Meaning of a disability: the lived experience of paralysis.Philadelphia: Temple University Press; 1999.
16.
16 Wendell S . The rejected body. Feminist philosophical reflections on disability.New York: Routledge; 1996.
17.
17 Murphy RF . The body silent (p4). New York: Norton; 1990.
18.
18 Bendz M . Rules of relevance after a stroke. Soc Sci Med2000; 51: 713–723.
19.
19 Department of Health. Cancer reform strategy.London: Department of Health; 2007.
20.
20 Medical Research Council. A framework for development and evaluation of RCTs for complex interventions to improve health.London: Medical Research Council; 2000.
21.
21 Pawson R Tilley N . Realistic evaluation.London: Sage; 1997.
22.
22 George AL Bennett A . Case studies and theory development in the social sciences.Cambridge: MIT Press; 2004.
23.
23 Glaser BG Strauss AL . The discovery of grounded theory: strategies for qualitative research.Chicago: Aldine; 1967.
24.
24 Jones EE . Interpersonal Perception.New York: Macmillan; 1990.
25.
25 Doris J . Lack of character: personality and moral behaviour.Cambridge: Cambridge University Press; 2002.
26.
26 Ross L . The intuitive psychologist and his shortcomings: distortions in the attribution process. In: L Berkowitz , (ed), Advances in experimental social psychology, vol 10. (New York): Academic Press; 1977. p. 173–220.
27.
27 Gilbert DT Jones EE . Perceiver-induced constraint: interpretations of self-generated reality. J Pers Soc Psychol1986; 50: 269–280.
28.
28 Quattrone GA . Overattribution and unit formation: when behaviour engulfs the person. J Pers Soc Psychol1982; 42: 592–607.
29.
29 Schwartz MB Bronwell KD . Actions necessary to prevent childhood obesity: creating the climate for change. J Law Med Ethics2007; 35: 78–89.
30.
30 Lauder W Anderson I Barclay A . Sociological and psychological theories of self-neglect. J Adv Nurs2002; 40: 331–338.
31.
31 Cioffi D . Somatic interpretation in cumulative trauma disorders: a social cognitive analysis. In: SD Moon SL Sauter , (eds), Psychosocial aspects of musculoskeletal disorders in office work. (New York): Taylor Francis; 1996. p. 43–63.
32.
32 Pfeiffer D . Too late, too little, or both. Disabil Rehabil2002; 24: 985–986.
33.
33 Albrecht GL . The disability business: rehabilitation in America.Newbury Park: Sage; 1992.
34.
34 Oliver M . The politics of disablement.Basingstoke: Macmillan; 1990.
35.
35 Brennan J . Adjustment to cancer – coping or personal transition? (p2). Psychooncology2001; 10: 1–18.
36.
36 Alaszewski A Alaszewski H Potter J . The bereavement model, stroke and rehabilitation: a critical analysis of the use of a psychological model in professional practice. Disabil Rehabil2004; 26: 1067–1078.
37.
37 Niemeier JP Kennedy RE McKinley WO Cifu DX . The Loss Inventory: preliminary reliability and validity data for a new measure of emotional and cognitive responses to disability. Disabil Rehabil2004; 26: 614–623.
38.
38 Livneh H Wilson LM . Coping strategies as predictors and mediators of disability-related variables and psychosocial adaptation. Rehabil Couns Bull2003; 46: 194–208.
39.
39 Livneh H . Psychosocial adaptation to chronic illness and disability: a conceptual framework. Rehabil Couns Bull2001; 44: 151–160.
40.
40 Kübler-Ross E . On death and dying.London: Tavistock; 1969.
41.
41 Papadatou D . A proposed model of health professionals’ grieving process. Omega2000; 41: 59–77.
42.
42 Yoshida KK . Reshaping of self: a pendular reconstruction of self and identity among patients with spinal cord injury. Sociol Health Illn1993; 15: 217–245.
43.
43 Penson J . A hope is not a promise: fostering hope within palliative care. Int J Palliat Nurs2000; 6: 94–98.
44.
44 Nekolaichuk CL Bruera E . On the nature of hope in palliative care. J Palliat Care1998; 14: 36–42.
45.
45 Herth K . Fostering hope in terminally ill people. J Adv Nurs1990; 15: 1250–1259.
46.
46 Taylor SE Kemeny ME Reed GM Bower JE Gruenewald TL . Psychological resources, positive illusions, and health. Am Psychol2000; 55: 99–109.
47.
47 Taylor SE Brown JD . Illusion and well-being: a social psychological perspective on mental health. Psychol Bull1988; 103: 193–210.
48.
48 Taylor SE . Adjustment to threatening events. A theory of cognitive adaptation. Am Psychol1983; 38: 1161–1173.
49.
49 Fiske ST Taylor SE . Social cognition (p88). Reading: Addison-Wesley; 1984.
50.
50 Taylor SE Armor DA . Positive illusions and coping with adversity. J Pers1996; 64: 873–898.
51.
51 Taylor SE Brown JD . Positive illusions and well-being revisited: separating fact from fiction. Psychol Bull1994; 116: 21–27.
