Patient participation from the perspective of staff members working in spinal cord injury rehabilitation.

STUDY DESIGN: Qualitative method, semi-structured interviews. OBJECTIVES: The aims of this study were to explore the meaning of patient participation from the perspective of staff members working with spinal cord injury (SCI) rehabilitation, and what they saw as requisites for and constraints to patient participation. SETTING: Swedish spinal injury unit. METHODS: Interviews with 13 staff members at a spinal unit were conducted individually and analyzed by means of content analysis. RESULTS: One category describing patient participation emerged from the interviews: Patient - a team member. Four categories were extracted as requisites: Communication; information and knowledge; routines; respecting the patient as a unique person; and an open climate. Three categories of constraints were identified: Understaffing and new staff members; patients' inability to grasp information; and structures and fragmented responsibilities. CONCLUSIONS: The informants were unanimous in stating that the patient is an integral and natural member of the rehabilitation team. Recognizing the person with SCI as a team member acknowledges and endorses the patient as a person with capabilities to participate in his or her rehabilitation. The patient as a person also means that he or she has unique needs and preferences, which the staff members must accommodate. This is also fundamental in a person-centered approach. Therefore, the viewpoints of the informants may be useful for other settings to enhance person centeredness and patient participation.

Quality of life in parents/caretakers of children with cerebral palsy in Kampong Cham, Cambodia.

The purpose of this study was to investigate QOL in parents/caretakers of children with cerebral palsy in the province of Kampong Cham, Cambodia. Forty parents/caretakers of children with cerebral palsy aged 1-13 years (F19/M21) participated in this study. The study was carried out using the Comprehensive Quality of life Scale A5 (ComQOL-A5) questionnaire. Results point out three major domains where quality of life is unsatisfactory: health, material well-being and emotional well-being. Of these areas, QOL in the health domain demonstrates the lowest scores. Results support a further commitment in providing comprehensive rehabilitation for parents and their children with CP in Kampong Cham. This study identifies the need for further research on QOL in parents/caretakers of children with CP in Cambodia and the need for development of valid and reliable QOL instruments targeting the developing world.

Long-term effects of home rehabilitation after hip fracture - 1-year follow-up of functioning, balance confidence, and health-related quality of life in elderly people.

PURPOSE: To investigate the long-term effects of home rehabilitation (HR) after hip fracture in elderly people. METHOD: A randomized, controlled longitudinal study on geriatric hospital-based HR was compared with conventional care (CC) in 102 patients. Independence in activities of daily living (ADL), frequency of activity, basic physical performance, balance confidence, health-related quality of life, mood and perceived recovery were measured 6 and 12 months after discharge. RESULTS: One year post-discharge the HR participants reported significantly higher degree of independence in self-care and locomotion, as well as of balance confidence in stairs and instrumental activities and perceived physical function, than the CC group. One year after discharge 14 persons (29%) in the HR group and five persons (9%) in the CC group considered themselves fully recovered. CONCLUSIONS: The positive long-term effects were more pronounced among the participants in the HR group than among those who received CC, possibly due to the early start of the HR programme in hospital and its focus on self-efficacy and training of daily activities. However, one year after discharge a mojority of participants in both groups did not consider themselves to be fully recovered when they compared to their situation before the fracture.

Sexuality and sexual life in women with spinal cord injury: a controlled study.

OBJECTIVE: To describe sexual life in women with spinal cord injury. DESIGN: Controlled cross-sectional, questionnaire. PARTICIPANTS AND METHODS: Women, 18-65 years, treated at spinal cord centres in Sweden, Denmark, Norway, Finland and Iceland. 545 women (57%) completed the questionnaires. The age-matched control group consisted of 507 women. The 104-item Spinal Cord Injury Women Questionnaire, was designed to assess different dimensions of sexuality. RESULTS: 80% of the women with spinal cord injury had engaged in sex after the injury. Reasons for not wanting or not having the courage to be intimate and sexual were physical problems, low sexual desire, low self-esteem and feelings of being unattractive. The motivations of both the women with spinal cord injury and controls to engage in sexual activity were intimacy-based rather than primarily sexual. Being in the right mood both before and during sex to become receptive to sexual stimulation was important. CONCLUSION: For women who are able to overcome the physical restrictions and mental obstacles due to injury, it is possible to regain an active and positive sexual life together with a partner. Sexual information and counselling should be available both during initial rehabilitation and later when the women have returned to their homes.

Spinal cord injured persons' conceptions of hospital care, rehabilitation, and a new life situation.

BACKGROUND: The basic aim of spinal cord injury (SCI) rehabilitation is to help patients return to a life worth living. It is therefore important that the staff at spinal units and rehabilitation centres understand how the patients experience their rehabilitation and their adjustment process to the new situation. AIM: To describe SCI persons' experiences of their rehabilitation process. METHOD: Nineteen SCI persons were interviewed. Data from the tape-recorded interviews were analysed according to a modified descriptive version of the phenomenographic analysis process. RESULTS: Six categories that describe the informants' conceptions of their rehabilitation process emerged: access to information, participation in planning rehabilitation, emotional support, feelings of vulnerability, adjustment to a new life situation, and emotional consequences of the injury. CONCLUSION: Straightforward information, participation in the planning of the rehabilitation programme and emotional support were important factors influencing the rehabilitation process after the SCI. Professionals working with SCI rehabilitation should make use of patients' experiences in order to develop better rehabilitation programmes that focus on the individual needs of the patient. People are individuals and failure to take this into account can impact negatively on quality of life and the effectiveness of the rehabilitation.

Relations between coping strategies and health-related quality of life in patients with spinal cord lesion.

OBJECTIVE: Although the use of appropriate coping strategies has been suggested to be a key factor in determining successful adjustment to severe physical illness/disability, little systematic support for this link has been found. We investigated relationships between spinal cord lesion-related coping strategies and health-related quality of life when studying for sociodemographic, disability-related and social support variables. DESIGN AND SUBJECTS: We studied 256 persons with traumatically acquired spinal cord lesion (=1 year) from a typical rural/urban Swedish area in a cross-sectional design. METHODS: Coping measure was the Spinal Cord Lesion-related Coping Strategies Questionnaire. Outcome measures were the Spinal Cord Injury Quality of Life Questionnaire, the Short-Form 36 Health Survey version 2.0, and a standardized global question of overall quality of life. Multiple regressions were performed. RESULTS: Coping strategies were clear correlates of health-related quality of life when sociodemographic, disability-related and social support variables were studied. The relationship between coping strategies and quality of life was: the more revaluation of life values (Acceptance) and the fewer tendencies towards dependent behaviour (Social reliance) the better the health-related quality of life. CONCLUSION: Our results suggest that greater focus needs to be directed to coping strategies and to ways of facilitating adaptive outcomes in rehabilitation.

Fear of falling, balance, and gait velocity in patients with stroke.

After a stroke balance can be impaired, that may influence the physical activities which can be undertaken. A person's confidence in performing activities without falling could be as important as the real balance ability in situations of daily living. The aims of the study were to evaluate the relationship between perceived self-confidence in task performance without falling, using the Falls Efficacy Scale, Swedish version, (FES(S)) and observer-assessed balance, measured by the BDL Balance Scale (BDL BS) and also between the FES(S) and gait velocity. Thirty-one subjects with stroke, 32-62 years of age, time since onset between 3 and 104 months, participated The FES(S) was significantly correlated with the BDL BS (r = 0.49, p = 0.008). Furthermore there were significant correlations between the FES(S) and self-selected (r = 0.53, p = 0.003) as well as for maximum (r = 0.55, p = 0.002) gait velocity. The results indicate that the use of the FES(S) can be recommended in subjects with stroke and balance deficit in order to map out the dimension of self-confidence in balance problems. However, in more highly functioning subjects with stroke other fall-efficacy assessments with major demands on balance performance may be preferable due to partly ceiling effect in the study population.

Is patient responsibility for managing musculoskeletal disorders related to self-reported better outcome of physiotherapy treatment?

Musculoskeletal disorders are prevalent and a major burden on individuals and society. Information on relationships of patient involvement and responsibility to outcome is limited. This study aimed to explore relationships between self-reported outcome of physiotherapy treatment and attitudes toward responsibility for musculoskeletal disorders. A cross-sectional postal survey design was used. Patients (n=615) from an outpatient physiotherapy clinic, who had finished their physiotherapy treatment within the last 6 months were sent a questionnaire that included the Attitudes regarding Responsibility for Musculoskeletal disorders instrument (ARM), self-reported outcome of treatment and sociodemographic data. A total of 279 (45%) completed forms were returned. Multiple logistic regression analysis was used. The patients' scores on the four dimensions of ARM ("responsibility self active," "responsibility out of my hands," "responsibility employer," and "responsibility medical professionals"), controlled for age, sex, education, and physical activity as well as for number of treatments, main treatment, and physiotherapist, were associated with the patients' self-reported treatment outcome. Patients who attributed responsibility more to themselves were more likely (OR 2.37 and over) to report considerable improvement as the outcome of physiotherapy treatment. Because this study was conducted at only one physiotherapy outpatient clinic and had a cross-sectional design, the results should be replicated in other settings. Because patients' attitudes regarding responsibility for musculoskeletal disorders can possibly affect the outcome of physiotherapy treatment, it might be useful to decide whether to systematically try to influence the person's attitude toward responsibility for the management of the disorder or to match treatment to attitude.

Home rehabilitation after hip fracture. A randomized controlled study on balance confidence, physical function and everyday activities.

OBJECTIVE: To investigate whether home rehabilitation can improve balance confidence, physical function and daily activity level compared to conventional care in the early phase after hip fracture. DESIGN: A randomized controlled study. SETTING: Geriatric rehabilitation clinic. SUBJECTS: One hundred and two community-dwelling elderly people. INTERVENTIONS: A geriatric, multiprofessional home rehabilitation programme focused on supported discharge, independence in daily activities, and enhancing physical activity and confidence in performing daily activities was compared with conventional care in which no structured rehabilitation after discharge was included. MAIN MEASURES: Falls efficacy, degree of dependency and frequency in daily activities, habitual physical activity and basic functional performance. RESULTS: When comparing status one month after discharge with baseline, the home rehabilitation group showed a higher degree of recovery in self-care (P<0.0001), mobility (P = 0.002), locomotion (P = 0.0036) and domestic activities (P = 0.0098), as well as larger increase in balance confidence on stairs (P = 0.0018) and instrumental activities (mean increase home rehabilitation 19.7 and conventional care 7.1, P<0.0001) compared with the conventional care group. At one month, a majority of the home rehabilitation participants (88%) took outdoor walks, compared with less than half (46%) of the conventional care group (P<0.001) and were also more independent in outdoor activities (P = 0.0014). CONCLUSIONS: This study indicates that home rehabilitation, focused on supported discharge and enhancing self-efficacy, improves balance confidence, independence and physical activity in community-dwelling older adults in the early phase after hip fracture.

Modified exercise test in screening for mitochondrial myopathies--adjustment of workload in relation to muscle strength.

The aim of this study was to evaluate the usefulness of a modification of the bicycle ergometer test, the subanaerobic threshold exercise test (SATET), as a screening test for patients with mitochondrial myopathies. Since the original SATET is frequently found to be strenuous for weak patients, a new variable (relative muscle strength) was added to the workload formula. Plasma lactate levels were recorded at rest, then after 5 and 15 min of cycling on an ergometer, with constant workload. Nine patients with mitochondrial myopathy, 10 patients with other neuromuscular diseases and 9 healthy but sedentary volunteers undertook the test. An upper reference limit after exercise for plasma lactate was settled at 2.9 mmol/l. The modified SATET showed a sensitivity of 78% and a specificity compared to the healthy subjects of 100%. Compared to patients with other neuromuscular diseases, the specificity was lower (60%). All subjects completed the test without severe fatigue or pain.