Health problems of persons with spinal cord injury living in the Netherlands

Purpose. To investigate the prevalence of health problems among persons with spinal cord injury (SCI) living in the Netherlands, to identify the problems experienced as most important, and to analyse the experienced impact of these most important problems on daily activities and social life.

Method. Postal survey among all members of the Dutch Association of Patients with SCI. The questionnaire focused on 26 health problems: 13 secondary impairments, 8 problems of daily living and 5 psychosocial problems.

Results. The respondents (response rate 45.5%, 454 persons) experienced an average of 8 health problems. The most frequently occurring problems regarded bladder and bowel regulation, spasms, pain, oedema and sexuality. Except for oedema, these problems were also most often cited as the most important. The most disabling condition for both daily and social activities was pain. Few significant relationships were found between the prevalence of health problems and the level, completeness and duration of the injury or gender.

Conclusion. Persons with SCI living in the community experience many health problems and limitations in daily activities and social life due to these problems. The occurrence of these problems does not diminish with increasing time after injury. This strongly emphasises the need for follow-up care.     

Young women with fibromyalgia in the United States and Sweden: perceived difficulties during the first year after diagnosis

Purpose. The major symptoms of fibromyalgia (FM) - pain, tiredness, disrupted sleep, and muscle weakness - severely impact everyday activities, including the paid work role of women who have had FM for a long time. There are no prospective studies on young and newly diagnosed women with FM. The aim of the present study was to describe and compare difficulties young and newly diagnosed women in Sweden and the United States experienced during their first year after diagnosis.

Method. Three interviews, 6 months apart, were conducted, with 49 Swedish and 45 US women between the ages of 18 and 39. Five open-ended questions were asked concerning physical, psychological and social difficulties and limitations, and factors that increased or decreased their difficulties and limitations. At interviews 2 and 3 the women were also asked about ways of preventing their difficulties. The answers were written down and analysed by a content analysis approach.

Results. Consistent categories of difficulties were reported: symptoms, movements, activities, moods, social network, external factors and coping strategies. More US women were working outside their homes than were their Swedish counterparts and they expressed more difficulties compared with the Swedish women.

Conclusions. In general, difficulties decreased and coping strategies increased over the 1-year period in both groups of newly diagnosed, young women.     

Masculine role variables and outcomes among men with spinal cord injury

Purpose. Few studies have considered the impact of masculine role variables on outcome and adjustment to SCI among men. The present study examined the relations among SCI, views of masculinity, psychological adjustment, and rehabilitation outcomes among men with SCI.

Method. The sample included 20 men with SCI receiving inpatient rehabilitation, with a mean age of 45 years. Data included demographic variables as well as Conformity to Masculine Norms Inventory (CMNI), Gender Role Conflict Scale (GRCS), Functional Independence Measure (FIM), and Satisfaction with Life Scale ratings, and change in marital status.

Results. The findings revealed that satisfaction with life was positively related to scores on the CMNI Violence scale, FIM change from admission to discharge was positively related to the CMNI Emotional Control scale and negatively related to the CMNI Dominance scale. Change in marital status was inversely related to the CMNI Emotional Control and Primacy of Work scales and the GRCS Restricted Emotionality and Power, Success, and Competition scales.

Conclusions. The findings show that certain aspects of the traditional masculine role (i.e., ability to modulate strong emotions) may be adaptive in the rehabilitation process, whereas other aspects (i.e., a dominant interpersonal style) may present a barrier to effective rehabilitation.     

Assessment of physical function and secondary complications after complete spinal cord injury

Purpose. Two physical function questions on the widely used SF-12 Health Related Quality of Life questionnaire appear less than optimal for people with complete spinal cord injury (SCI). Physical function questions typically receive the lowest score unless the individual is ambulatory. Additionally, the influence of secondary complications of SCI on quality of life is largely unknown. The purposes of this report are: (1) to determine whether two SF-12 physical function follow-up questions provide increased information in subjects with complete SCI; and (2) to describe the secondary complications of SCI in this group.

Method. Ten subjects with complete SCI completed two survey instruments (the SF-12 and a Secondary Complications survey) every 3 months. The SF-12 included two physical function follow-up questions designed to improve the sensitivity and appropriateness of the SF-12 for a population with complete SCI.

Results. The SF-12 follow-up questions revealed differences in physical function that did not appear with the original SF-12 items. With the new questions, subject scores approximated population normative values. The most common secondary complications (back pain, shoulder pain, leg spasms, leg joint stiffness, and difficulty coughing) were the most likely to be rated as moderately or greatly bothersome.

Conclusion. We advocate the use of follow-up questions for the SF-12 in complete SCI populations that are not ambulating to better discriminate changes in physical function. Secondly, we advocate further investigations to better understand the incidence and the severity of secondary complications after SCI.     

What promotes physical activity after spinal cord injury? An interview study from a patient perspective

Purpose. Physical activity in people with traumatic spinal cord injury (SCI) is of importance not only for maintaining health but also for increasing the possibilities of living an independent life. Physical inactivity leads to poorer muscular and cardiovascular conditioning and sub-optimal levels of functioning. To help people with SCI to achieve optimum physical activity, it is important to understand what promotes the incorporation of regular physical activity into daily life. The aim of this study was thus to identify factors that may promote participation in physical activity among people with spinal cord injuries.

Method. Qualitative multiple case studies. Sixteen participants with SCI were interviewed.

Result. Four main themes of promoting factors could be identified. They were: using cognitive and behavioural strategies; finding supporting environmental solutions; exploring motivation post injury; and capturing new frames of reference.

Conclusion. By utilising the motivational power of role models, together with the other motivational factors identified in this study, such as identifying relevant individual motives post injury and capturing new frames of reference, the process towards physical active life may be facilitated.     

Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life

Purpose. Cognitive changes occur in over 50% of persons diagnosed with multiple sclerosis (MS). Although previous research has provided information of the nature and severity of cognitive changes among persons with MS, it has offered relatively limited insight on the impact of these changes on levels of functioning and disability. The purpose of this study was to explore the impact of cognitive changes on the lives of four individuals with MS with different life roles (worker, parent, retired older adult).

Method. Qualitative methodologies were used in the study and included multiple open-ended interviews with the study participants and the completion of Cognitive Experience Forms in between interviews. In addition, the Perceived Deficits Questionnaire and a demographics form were administered. Thematic analysis was used to analyse the study data.

Results. Participants described the types of cognitive changes they are experiencing and how these changes affect their ability to participate and engage in desired activities and maintain their primary roles. Participants also talked about how cognitive changes affect their quality of life.

Conclusions. This study points to the complexity of cognitive changes and highlight the importance of addressing these changes in rehabilitation.     

To regain participation in occupations through human encounters--narratives from women with spinal cord injury

Purpose. To gain an understanding of how women with spinal cord injury (SCI) experienced human encounters in occupations and how these influenced their participation.

Method. The data were collected through two or three in-depth interviews with 13 women (age 25 - 61 years) with SCI. Data analysis was carried out by using a paradigmatic analysis of narrative data, followed by an interpretation based on a narrative theory.

Results. The results showed a complexity where the women's experiences and acting in human encounters changed over time. In these human encounters the women struggled with conflicts, supported other persons that were insecure and revaluated their apprehension about persons in their social network. These multidimensional human encounters thereby enabled them to regain participation in occupations.

Conclusions. This shows that human encounters are important for persons with disabilities so they can restructure their occupational identity and their needs for participation in occupations. The study also showed that the use of narratives as a tool within rehabilitation could lead to an increased understanding of the subjective changes that occur over time for a person with a disability.     

Economic assessment of pressure sore prevention using a computerized mattress system in patients with spinal cord injury

Purpose. To assess the economic profitability of a new computerized mattress system in patients with spinal cord injuries (SCI) by comparison with two other alternatives, as an example of the use of a quantitative approach for decision-making in choosing between alternatives for sore prevention.

Method. The cost of achieving one day without signs of impending pressure sore was compared between the alternative options using cost minimization analysis. Savings in nursing costs for the three options were calculated for cost-benefit analysis.

Results. A foam mattress system is significantly cheaper than the other examined alternatives, and if the nursing manpower cost is constant and the nursing staff is capable of performing sufficient repositionings, this system would achieve the desired medical outcome at a minimal cost. However, if the nursing staff cannot perform sufficient repositionings, or if the use of nursing manpower can be adjusted to the actual need, then it is the computerized mattress system that achieves the desired outcome at the minimal cost. In this case, less than 20 New Israeli Shekels (NIS) per day spent on the equipment save NIS 45 per day in labor costs.

Conclusions. The economic evaluation indicates that the computerized mattress system is advisable for patients with SCI who require assistance for repositioning, but its profitability depends on the employment terms of the nursing manpower. In addition, other possible alternative pressure management systems should be examined, and additional research may be needed to determine the optimal combination of such systems for a spinal cord rehabilitation department.     

Increases in bone mineral density after functional electrical stimulation cycling exercises in spinal cord injured patients

Purpose. To assess the change in bone mineral density (BMD) after spinal cord injury (SCI) and to evaluate whether BMD loss can be reversed with the intervention of functional electric stimulation cycling exercises (FESCE).

Methods. Fifteen males with SCI were included. Fifteen able-bodied males were also tested to compare BMD. In the SCI group, the FESCE was performed for six months, and then was discontinued in the subsequent six months. BMD was performed before the FESCE, immediately after six months of the FESCE, and at the end of the subsequent six months.

Results. Before the FESCE, the BMD of the SCI subjects in every site, except the lumbar spine, was lower than that of the able-bodied subjects. After six months of FESCE, BMD of the distal femur (DF) and proximal tibia (PT) increased significantly, and BMD of the calcaneus (heel) showed a trend of increase. However, the BMD in the DF, PT, and heel decreased significantly after the subsequent six months without FESCE. The BMD of the femoral neck (FN) decreased progressively throughout the programme.

Conclusions. Our study showed site-specific BMD changes after FESCE. The BMD loss in the DF and PT was partially reversed after six months of FESCE, but the effect faded once the exercise was discontinued.     

Evaluation of patient education in spinal cord injury rehabilitation: knowledge, problem-solving and perceived importance

Purpose. Through inpatient education programmes the person with spinal cord injury (SCI) learns to understand and monitor his or her own physical, emotional and social well-being. The purpose of this study was to determine the patients' knowledge and problem-solving skills regarding SCI at admission, discharge and follow-up at 6 months after discharge; and to determine the perceived importance of each content topic included in the education programme.

Methods. A one-group repeated measures design was used to evaluate the outcomes. Knowledge was evaluated with a Multiple Choice Questionnaire (MCQ). Problem-solving ability based on participants' responses to Life Situation Scenarios relevant to each topic area was rated on a standardized four-point criterion reference scale. Perceived importance for each topic area was rated on a five-point Likert scale.

Results. Twenty-three participants completed all assessments. There was significant improvement in MCQ scores from admission to discharge (P = 0.04) and admission to follow-up (P = 0.02). For problem-solving ability, there was a trend toward improvement in all content topics with significant improvement from admission to follow-up for the topic of bowel care (P = 0.004). However, many participants continued to demonstrate poor problem-solving ability. Bowel, Bladder and Skin Care were consistently perceived as the most important education topics.

Conclusions. Improvements in knowledge do not necessarily translate to improvements in problem-solving ability even for the topics perceived as important. This may indicate the need to incorporate more active learning strategies or contextually based strategies within patient education programmes to facilitate the transfer of knowledge within life situations.     

Physiotherapy in Afghanistan: an analysis of current challenges

Introduction. Afghanistan has high levels of disability due to prolonged conflict. An important part of the reconstruction process in Afghanistan is strengthening health service capacity and, within this, rehabilitation services.

Aims: To identify training needs of, and key issues affecting, Afghan physiotherapists.

Methods. 20 interviews and clinical accompaniment of 15 physiotherapists/physiotherapy assistants (APA) carried out in the second quarter of 2003. Analysis was using a grounded theory approach.

Results. Five themes emerged: (1) Low professional profile of physiotherapy; (2) Difficult working conditions; (3) Difficulty identifying personal training needs; (4) Difficulty with clinical reasoning at undergraduate level; (5) Variable levels of clinical competence.

Discussion. Many of the challenges facing Afghan physiotherapists are not unique to Afghanistan but are exacerbated by a lack of government recognition of the profession. War has isolated Afghan physiotherapists from completed professional links and consequently the undergraduate curriculum had not matched developments in other comparable countries. This has contributed to the difficulties therapists' experience with current clinical reasoning and accessing new practice developments. Culture also influences attitudes towards training and has restricted female travel and access to education.

Conclusions. Core training needs include disability sensitization, reflective practice and clinical reasoning. The physiotherapy curriculum needs updating and links with ongoing research need to be established to keep abreast of new developments.     

The social experience of aging with a chronic illness: perspectives of older adults with multiple sclerosis

Purpose. The purpose of this study was to explore the social experiences of older adults with multiple sclerosis (MS) in order to recognize the changes in social experience and social needs that may occur with aging with a chronic illness.

Method. Analysis of qualitative data from an exploratory study utilizing a phenomenological approach with 27 older adults with MS, aged 55 - 81.

Results. In-depth interviews revealed that the social experience was influenced by groups of factors including the person's social needs, experience of MS, values and expectations, characteristics of the social support system, the response of the support providers, and the accessibility of the social environment. The participants discussed concerns about the future adequacy of support. A process of negotiation was also described and was seen as an opportunity to change the social experience and social support received.

Conclusion. This study provides an insider's view of the social changes that older adults living with MS experience. This study also identifies barriers to the acquisition of support and addresses the importance of appropriately responding to the changing needs of this population.     

Women with fibromyalgia: work and rehabilitation

Purpose. To explore disability in women with fibromyalgia with a focus on their work situation.

Method. Review of literature on work status of women with fibromyalgia.

Results. Major differences exist between studies in reported disability and in the percentages of women working. Limitations caused by pain, fatigue, decreased muscle strength, and endurance influence work capacity. However, 34 - 77% of the women work. Individual adjustments in the work situation are reported. When the women find a level that matches their ability, they continue to work and find satisfaction in their work role. Many factors besides degree of impairment or disability influence whether clients with longstanding pain can remain in their work role or return to work after sickness leave.

Conclusion. The total life situation, other commitments, type of work tasks, the ability to influence the work situation, and the physical and psychosocial work environment are important factors in determining whether a person can remain in a work role. More knowledge is needed about how to adjust work conditions for people with partial work ability to the benefit of society and the individual.     

Rehabilitation medicine in countries of Central/Eastern Europe

Purpose. To describe attributes of rehabilitation medicine common to the five countries of Central Eastern Europe (CEE) and their implications for future challenges.

Methods. Critical collection and study of pertinent data on evolvement and present state of rehabilitation medicine in CEE countries by a coordinated team of rehabilitation experts from each of the relevant countries.

Results. CEE countries are similar in their need for rehabilitation medicine, its evolvement, present state and current practice. Settings largely emerged without strategic planning on the national level and lagged behind those in Central and Western Europe both in time and content.

Conclusion. The framework that evolved in all except Slovenia is not appropriate to needs. In order to meet future challenges all five CEE countries need the incorporation of inpatient, outpatient and community-based rehabilitation into one system.     

'A lifestyle coat-hanger': a phenomenological study of the meanings of artwork for women coping with chronic illness and disability

Purpose: The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being.

Method: Thirty women were interviewed and five submitted written narratives. Interpretative phenomenological analysis was carried out.

Results: About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a 'lifestyle coat-hanger' organising numerous further roles and activities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before.

Conclusion: The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury.     

'A constant struggle': successful strategies of women in work despite fibromyalgia

Purpose. This study aimed to explore, and obtain increased knowledge of, the strategies used by working women with fibromyalgia regarding control of pain, fatigue and other symptoms.

Method. Qualitative methods with an emergent design were used. The informants were women with fibromyalgia who had participated in rehabilitation 6-8 years earlier, and were still in work. Diaries, focus groups and individual interviews were used for data collection. Content analysis and grounded theory were used for the analyses.

Results. A model with three categories emerged. The core category 'constant struggle' contains eight sub-categories: enjoying life, taking care of oneself, positive thinking, setting limits, using pain as a guide, creative solutions, learning/being knowledgeable and 'walking a tightrope'. The category 'grieving process' was a prerequisite for managing the struggle and the category 'social support' contained what facilitated the struggle.

Conclusion. The informants fought a constant struggle against the symptoms and the consequences of their fibromyalgia. Their strategies were action-oriented and evinced a positive spirit. To have grieved and accepted their situation was a prerequisite for managing, and support from the family was a help in the struggle.     

To work or not to work? The occupational trajectories of wheelchair users

Purpose. To throw light upon the dynamic processes which may or may not lead persons with severe motor disability to employment.

Method. A qualitative approach to the chronology of both the professional and non-professional occupations of wheelchair users between acquisition of the disability and the interview; this approach focuses upon actions and meanings, thus allowing the authors to identify the diverse factors which help build the occupation situation at the time of the study. The narratives of 36 wheelchair users of working age were used. The objective of the analysis was to reconstitute the occupation trajectories of the participants and hence to suggest a typology. This involved pinpointing the various actors, the external and cognitive contexts of their decisions and actions, and their consequences and related feelings.

Results. The wide diversity found in the trajectories forced the authors to go beyond any simple notion of 'work versus non-work' and to focus on the quality of the individual's process of occupation appropriation. Indeed, it is possible to successfully appropriate both work and non-work situations, just as, inversely, it is possible for a person to fail to appropriate either type of situation. Analysis of this process allows one to pinpoint different types of trajectory. On the one hand, trajectories within which people appropriate their occupations - gradual, intermittent, through rupture and successive adjustment - and, on the other hand, unstable or endured occupation trajectories.

Conclusions. The findings suggest that with regard to rehabilitation practices, we should be focussing as much on the appropriation process as on return to work.     

Health, quality of life, social network and use of health care: a comparison between those granted and those not granted disability pensions

Purpose. The aim was to compare self-rated health, health-related quality of life (HRQoL), social networks and health care utilisation of those granted disability pension (DP) and those not granted disability pension (nDP).

Method. Demographic data and medical diagnoses were obtained from the records of the social insurance office. Data concerning self-reported health, HRQoL social networks, and use of health care were collected by a postal questionnaire. The nDP group included all those not granted full DPs between 1999 and 2000 (n = 99). The DP group were a random sample of those granted full DPs, during the same period (n = 197).

Results. The nDP group had more often multiple diagnoses, and lower self-reported health and HRQoL compared to those granted DP. In particular, their average scores were lower on the SF-36 scales social functioning, role limitations due to physical problems and mental health. The nDP group also had significantly smaller social networks.

Conclusions. Contrary to expectations, those not granted a disability pension do not seem to have better health, but rather to suffer from more sickness than those who were granted a disability pension.     

Gender differences in amputation outcome

Purpose. To assess the influence of gender on the success of limb-fitting after amputation.

Methods. One-hundred and five successive in-patients admitted to an amputee rehabilitation ward were followed to assess the success of limb-fitting at discharge. The influence of demographic, clinical and social factors on the success of lower limb-fitting was assessed using linear regression analysis and group comparisons.

Results. There were 35 (33%) women in a cohort of 105 successive admissions. Men and women were comparable in terms of age, length of stay, medical comorbidity and level of amputation. Women were less likely to be successfully fitted with a prosthetic limb at discharge than men (42.9% vs 68.6%, p = 0.011), and more women lived alone (57.1% vs 38.6%, p = 0.021). Linear regression revealed that gender was an independent significant factor in the success of limb-fitting; age, level and cause of amputation, co-morbidity and length of stay were not significant factors.

Conclusions. Women were less likely to be successfully fitted with a lower limb prosthesis after amputation.     

Healing care? Rehabilitation of female immigrant patients with chronic pain from a family perspective

Purpose. This pilot study aimed to address the social context of rehabilitation by exploring the perspectives of family members regarding rehabilitation of female immigrant patients with a chronic pain condition.

Method. In-depth semi-structured, face-to-face interviews were conducted with family members of nine patients. The interviews were transcribed and subsequently coded and analysed according to themes.

Results. All participants acknowledged that their respective relative experiences pain. Pain is considered a symptom of the malfunctioning body and different explanatory notions are given. Participants regarded medication, warmth, rest or gentle exercise to be appropriate treatment options. Most participants had limited awareness of, and involvement in, rehabilitation. The role of family members in illness management lies mainly in providing advice and in taking over or assisting in domestic activities.

Conclusion. The importance of considering the patient's social context and involving family in the treatment process is indicated in the literature. However, awareness of the aim and content of rehabilitation was limited among most participating family members as was their involvement in the rehabilitation process of their relative. It is recommended that further research needs to look at factors influencing involvement of family members before effective strategies for involving family members of patients of various socio-economic and/or cultural backgrounds can be developed.