Results: The literature focuses on the effect of neurological change on women's ability to achieve sexual arousal and orgasm. Urinary and bowel incontinence, spasticity, vaginal lubrication and autonomic dysreflexia are the physical consequences of SCI that appear to have most impact on sexual activity. More recent studies have acknowledged that psychosocial factors such as age and partnership status may also affect the successful sexual rehabilitation. Discussions with women with SCI in Denmark and Sweden on their reactions to information and counselling offered during rehabilitation revealed an overwhelming need for the exchange of information and experience with other women with SCI, and a desire for opportunities for counselling after initial rehabilitation. Conclusion: Successful sexual rehabilitation of women with SCI demands a holistic approach that considers individual neurological, physical and psychosocial circumstances. Peer-counselling could make a significant contribution to the sexual rehabilitation of women with SCI.
We aimed to examine how integration and participation are understood by persons with spinal cord injury. A qualitative study was carried out where we analysed 14 interviews with persons with spinal cord injury living in Switzerland. Integration was more often understood in terms of social acceptance and inclusion, while individual activities were more often highlighted in definitions of participation. Environmental factors were seen as the most important determinants. Applied strategies comprised pre-arrangements, open communication, asking for help and optimism. Common ground appears to be autonomous functioning and freedom of choice while major determinants are seen in the environment.
Study design: Consensus decision-making process. Objectives: The objective of this study was to develop an International Spinal Cord Injury (SCI) Activities and Participation (A&P) Basic Data Set. Setting: International working group. Methods: A committee of experts was established to select and define A&P data elements to be included in this data set. A draft data set was developed and posted on the International Spinal Cord Society (ISCoS) and American Spinal Injury Association websites and was also disseminated among appropriate organizations for review. Suggested revisions were considered, and a final version of the A&P Data Set was completed. Results: Consensus was reached to define A&P and to incorporate both performance and satisfaction ratings. Items that were considered core to each A&P domain were selected from two existing questionnaires. Four items measuring activities were selected from the Spinal Cord Independence Measure III to provide basic data on task execution in activities of daily living. Eight items were selected from the Craig Handicap Assessment and Reporting Technique to provide basic data on the frequency of participation. An additional rating of satisfaction on a three-point scale for each item completes the total of 24 A&P variables. INTRODUCTIONSpinal cord injury (SCI) affects all body functions below the level of the neurological lesion, and people with SCI may therefore experience a wide range of impairments in body functions, activities and participation and quality of life. 1,2 The typical spectrum of activity limitations and participation restrictions relates to mobility such as transfers and locomotion, self-care activities such as bathing, dressing and toileting, difficulties in regaining employment, maintaining social relationships, participating in leisure activities and being active members of the community. 3,4 The social, economical and psychological consequences for an individual with SCI are significant and usually lifelong and are the result of a complex interaction of factors, including, but not limited to, acute neurological recovery, medical intervention and support from rehabilitation and social reintegration services. 3 To facilitate comparisons regarding injuries, treatments and outcomes between individuals with SCI, treatment centers and countries,
These are exciting times for the translation of promising interventions for spinal cord injury (SCI) into testing with clinical trials. These interventions include acute surgical decompression, neuroprotection, neural repair, cell replacement, activity-based rehabilitation, and medical devices, including devices requiring surgical implantation. By nature, clinical trials can have strict inclusion and exclusion criteria, which narrow down the pool of potential participants. Meeting enrollment numbers for properly powered trials is a daunting task. Therefore, it is important that trials are designed in a manner that facilitates participation. The purpose of this research study was to learn more about the factors that encourage or interfere with the decision to participate in clinical trials from the perspective of people living with SCI. A multi-national survey was conducted, primarily online, in which 802 participants with SCI ranked 32 factors as facilitators or barriers, using a Likert-type scale. There were 13 universal facilitators, five universal barriers, and three universally neutral factors. The number one facilitator was possible improvement in functionality and the number one barrier was possible decline in functionality--as may be expected. However, many unexpected facilitators and barriers were identified. There also were certain factors that were strong barriers or facilitators to certain sub-groups of people living with SCI. All of these factors should be taken into careful consideration when designing clinical trials so as to promote enrollment and enable adherence to different protocols.
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