Lorraine Hilary De Souza

This article aims to describe the characteristics of those with a primary diagnosis of spinal cord injury (SCI) attending a specialist wheelchair service providing electric powered indoor/outdoor chairs (EPIOCs). This cross-sectional study, with retrospective review of electronic and case note records, explores the complexities of additional clinical features associated with SCI and disability influencing prescription. Data were extracted under three themes; demographics, diagnostic/clinical information and wheelchair factors. There were 57 participants (35 men, 22 women) (mean age 53.51 ± 11.93, range 29–79 years) comprising 20 with paraplegia, 34 with tetraplegia and 3 with undocumented level. Paraplegics were significantly older than tetraplegics (p < 0.05). Thirty users had a complete SCI (mean age 49.87 ± 12.27 years) and 27 had another SCI lesion (mean age 57.56 ± 10.32 years). Those with a complete SCI were significantly younger than the rest (p < 0.02). Only 10 (9 tetraplegic) had SCI as the sole diagnosis. Twenty (15 tetraplegic) had one additional clinical feature, 14 had 2–3 (6 tetraplegic) and 13 (4 tetraplegic) had 4 or more. Ten users required specialised seating, 22 needed tilt-in-space EPIOCs while six required complex controls. The range and complexity of wheelchair and seating needs benefitted from a holistic assessment and prescription by a specialist multidisciplinary team.

Purpose: To describe the clinical features of electric powered indoor/outdoor wheelchair (EPIOC) users with rare diseases (RD) impacting on EPIOC provision and seating. Method: Retrospective review by a consultant in rehabilitation medicine of electronic and case note records of EPIOC recipients with RDs attending a specialist wheelchair service between June 2007 and September 2008. Data were systematically extracted, entered into a database and analysed under three themes; demographic, diagnostic/clinical (including comorbidity and associated clinical features (ACFs) of the illness/disability) and wheelchair factors. Results: Fifty-four (27 male) EPIOC users, mean age 37.3 (SD 18.6, range 11–70) with RDs were identified and reviewed a mean of 64 (range 0–131) months after receiving their wheelchair. Diagnoses included 27 types of RDs including Friedreich’s ataxia, motor neurone disease, osteogenesis imperfecta, arthrogryposis, cerebellar syndromes and others. Nineteen users had between them 36 comorbidities and 30 users had 44 ACFs likely to influence the prescription. Tilt-in-space was provided to 34 (63%) users and specialised seating to 17 (31%). Four users had between them complex control or interfacing issues. Conclusions: The complex and diverse clinical problems of those with RDs present unique challenges to the multiprofessional wheelchair team to maintain successful independent mobility and community living.

For people with disabilities, one of the best ways to achieve independence is through work. Experience gained by undertaking a work placement whilst a student provides valuable knowledge and understanding of the demands of work, and enhances employability on graduation for both students with disabilities and for their non-disabled peers. The aims of this study were to explore the experiences of disabled students who had undertaken work placements as part of their degree courses, and to determine if their experiences adequately prepare them for the world of work once they graduate. A survey, using the Delphi method, was carried out to reveal the five most important positive and negative experiences of students with disabilities following completion of a work placement. Fifty-one students entered the study and 42 completed all requirements. The most important positive experience reported was ‘gaining experience/knowledge’ and the primary negative experience was ‘demanding expectations’. The responses showed highly significant agreement (Kendall’s Co-efficient of Concordance; p < 0.001) for both positive and negative experiences. Findings revealed that students with disabilities have similar work placement experiences to students in general. However, these experiences may have a greater impact on the abilities of students with disabilities to cope and to achieve.

Purpose. The emotional distress caused by pain is one of the most disruptive aspects of living with the condition. This study investigates how individuals experience pain and its consequences for family life and work. Method. Unstructured interviews, using the ‘Framework’ approach with topic guide, were recorded and transcribed. Patients were sampled for age, sex, ethnicity and occupation from new referrals with spinal pain (SP) to a rheumatology outpatient clinic. Eleven patients (five males and six females) were interviewed in English (n = 9) or their preferred language (n = 2). Interviews were read in depth twice to identify the topics. Data were extracted in phrases and sentences using thematic content analysis. Results. Emergent themes reported were relationships with: spouses and partners (n = 7), children/parents (n = 6), with other family and friends (n = 7) and work-related issues (n = 11). Patients valued support from family but expressed concerns about causing them worry. Work-related issues included physical and emotional efforts to keep working when in pain, fear of losing employment and financial problems. Conclusion. Patients expressed anxiety about how their pain affected other family members, regret at losing full work capacity and worry about financial consequences. The lived experience of chronic SP has ramifications that go beyond the individual, reaching into work and social relationships.

Purpose. Back-related functional limitations are largely assessed using lists of activities, each scored on a yes/no basis and the scores then summed. This provides little information about how chronic back pain (CBP) patients live with their condition. This study describes the consequences of living day-to-day with CBP and documents the ‘insider’ accounts of its impact on daily life. Method. Unstructured interviews, using the ‘Framework’ approach with topic guide, were recorded and transcribed verbatim. Subjects were sampled for age, sex, ethnicity and occupation from new referrals with back pain to a rheumatology outpatient clinic. Eleven subjects (5 male, 6 female) were interviewed either in English (n = 9) or their preferred language (n = 2). Interviews were read in-depth twice to identify the topics. Data were extracted in phrases and sentences using thematic content analysis. Results. Four themes emerged: sleep/rest, mobility, independence and leisure. All subjects reported issues about sleep and rest, nine about mobility, seven about independence and six on leisure. Most descriptions concerned loss and limitation in daily life. Strategies for coping with sleep disruption and physical limitations were described. Conclusions. Subjects provided graphic ‘in-depth’ descriptions of experiences living with CBP every day; expressed regret at the loss of capabilities and distress at the functional consequences of those losses. Facilitating ‘adjustment’ to ‘loss’ may be more helpful than inferring the potential for a life free of pain as a result of therapeutic endeavours.

Background and Purpose: Studies into the effect of pain experience on those who have it have largely focused on the views and interpretations of researchers gained by the use of assessment tools aimed at measuring pain. The purpose of this study was to explore and describe pain, as experienced by those with chronic back pain, and to document ‘insider’ accounts of how pain is perceived and understood by those who have it.Method: Unstructured interviews using the framework approach. Subjects were sampled for age, sex, ethnicity and occupation, from new referrals with back pain to a rheumatology outpatient clinic. Eleven subjects (5 M; 6 F) agreed to be interviewed. Interviews were unstructured, but followed a topic guide. Subjects were interviewed in English (nine) or their preferred language (two). Tape‐recordings of interviews were transcribed verbatim and read in depth twice to identify the topics or concepts. Data were extracted in the form of words and phrases by use of thematic content analysis. The themes were pain description and amount of pain. An independent researcher reviewed the data and confirmed or contended the analysis.Results: All subjects, except one, provided descriptors of the quality of their pain. The use of simile was common to emphasize both what the pain was, and what it was not. Five subjects expressed a loss of words in trying to describe their pain. Only 13 of 29 different pain descriptors used were commensurate with those in the McGill Pain Questionnaire (Melzack, 1983). Subjects had great difficulty quantifying their pain intensity. Several explained how the pain fluctuated, thus, quantifying pain at one point in time was problematic. Only one subject offered a numerical description of pain intensity.Conclusions: Subjects provided graphic and in‐depth descriptions of their pain experience, but these bore little resemblance to commonly used assessment tools. The findings challenge the appropriateness of such formal instruments. Copyright © 2000 Whurr Publishers Ltd.

Objective: To develop a valid and reliable scale of the Guttman type for the assessment of mobility disability in multiple sclerosis (MS). Subjects: Sixty-eight subjects with a definite diagnosis of MS participated. They were living in the community and attending as outpatients at a MS unit at a District General Hospital. Thirty had the primary progressive pattern of disease, and 38 had the relapsing–remitting pattern. Methods: Formal assessments used for neurological disability were inspected, and 14 test items of gross motor function were extracted and ordered according to criteria. These were that tests required trunk control and did not require isolated movement at a single limb or body segment, that actions progressed from lying, to sitting, to standing and walking tasks, proceeding from broader to narrower bases of support. All subjects carried out all test items which were scored as ‘pass’ or ‘fail'. Analysis: Data were tested for internal consistency, reliability, inter-item correlation, reproducibility and scalability. On the basis of the results, the items were reordered in rank, and reduced to 11 tests. The 11-item scale was reanalysed. Results: Results showed that the scale had an internal consistency of 0.88 (α coefficient) and a coefficient of reproducibility (CR) of 0.95 and above for both MS subject groups. The coefficient of scalability (CS) for items was 0.78 for primary progressive subjects and 0.74 for the relapsing–remitting group. Reliability ranged from moderate (kappa = 0.49) for one item, to perfect for six items. Conclusion: The scale was demonstrated to be a hierarchical scale of the Guttman type exhibiting homogeneity and good reliability. The high CR indicated that scores may be summed, and the very acceptable levels of CS indicated that the cumulative scores are meaningful within the defined concept of hierarchy used in this study.