| Summary: | Introduction This thesis describes a research study designed to examine the consequences of disability arising out of spinal cord compression secondary to cancer, and to examine the rehabilitation services available to patients. Research aims and questions The study was intended to achieve the following: 1. To ascertain what might constitute effective rehabilitation interventions for patients with metastatic spinal cord compression. 2. To identify the conditions in which these intervention might be delivered. 3. To ground proposals in spinal cord compression patients’ experience of disability. The following research questions were posed: 1. What are the consequences of disability for patients with metastatic spinal cord compression? 2. What strategies do patients themselves use to manage disability? 3. What do health care staff, particularly rehabilitation professionals, understand to be the consequences of disability for this patient group, and correspondingly, what are their views on the significance and provision of rehabilitation? 4. To what extent is rehabilitation being provided to these patients, and with what effect? 5. Where rehabilitation is not being provided, why is this the case? Study design The study had two components: • A series of nine in-depth interview-based case studies, which involved talking to patients about their experiences of living with spinal cord compression, as well as gaining the perspectives of family members and the health professionals who provided care and services. • A retrospective audit of the medical records of 73 spinal cord compression patients admitted to a radiotherapy in-patient unit (the Frank Ellis Unit at the Churchill Hospital in Oxford) over a two year period (July 2003 – June 2005), identifying disability-related problems and the measures taken to address them. This was a Phase I modelling study in terms of the Medical Research Council’s framework for evaluating complex interventions, with Pawson and Tilley’s (1997) Context-Mechanism-Outcome configuration adopted as a conceptual basis for data collection. Within-case analysis was informed by George and Bennett’s (2004) account of process tracing, and between-case analysis was modelled on the constant comparative method of Glaser and Strauss (1967) with an analysis of narrative as a variation on that theme. Results Disability is a serious problem for patients with spinal cord compression, but it is one problem among many others, not the least of which are the physical and emotional consequences of life-threatening illness. In response to disability, patients ‘twin-track’ their attitudes to it, acknowledging but also resisting the idea of themselves as disabled, and adopting a series of psychological devices to manage the tension. In effect, patients recognise that something significant has changed and that, as a consequence, new self-management skills must be learned, functional boundaries must be explored, useful information must be sought. At the same time, they display a determination to hold on to an established identity, associated with a sense of normality. This identity embraces the idea of competence and resourcefulness, the events, activities and pleasures that one looks forward to, and the wish to avoid burdening others. It is not a ‘disabled’ identity. To some extent, these two attitudes are in tension, as one acknowledges disability while the other, implicitly or explicitly, resists it. Consequently, patients try to find ways of resolving this tension, by ‘revising downwards’ their expectations, by constantly deferring the anticipated pleasures, and by avoiding situations in which their abilities might be put to the test, or the sense of normality be disconfirmed. Health care professionals are likely to construe the patient’s response as indicative of a certain type of character – ‘realistic’ on one hand, and ‘unrealistic’ on the other. They do not see ‘acknowledging / not acknowledging’ as twin facets of a complex response to circumstances, or as something which every patient engages in to one degree or another. Patients are motivated not to recognise rehabilitation as something they need, a view which is confirmed by the cursory form of rehabilitation experienced in hospital, and by the marginal significance attributed to it by nursing and medical staff. On discharge, hospital staff assume that rehabilitation needs will be identified in the community, although the way in which community rehabilitation services are organised virtually guarantees that this will not happen, unless a specific referral is made (as it is in only 5% of cases). The patient, meanwhile, remains unaware of the potential value of rehabilitation, and has no incentive to request rehabilitation if no-one offers it. They are consequently unprepared for life post-discharge, and assume that they (and their families) must manage on their own. Conclusions Like the patients, health care professionals may have to ‘twin-track’ if they are to provide rehabilitation in a way that is acceptable to patients with metastatic spinal cord compression. Instead of categorising patients as ‘realistic’ or ‘unrealistic’, they should work towards sustaining patients’ ‘positive illusions’, while at the same time taking whatever opportunities arise to enhance the patient’s day-to-day ability to function in a ‘safe’ space. This entails revising some deeply entrenched ideas about working with patients who have a disability: patient-centredness, the importance of goal setting, and the need for adjustment.
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