Retrospective Evaluation of Residential Activity Courses for People With Spinal Cord Injury
Paul Kennedy, DPhil; Lynne Hindson, BSc (Hons); and Nicola Taylor, BSc (Hons)
ABSTRACT
The purpose of this study was to retrospectively investigate the general benefits and impact that activity courses have on coping, activity involvement, relationships, and self-perception. Participants who had attended a multi-activity “Back-Up” course between 1998 and 2002 completed questionnaires related to demographics, course impact on sense of coping, involvement in work-related and recreational activities, and relationships. A shortened version of the Self- Perception Scale was included and qualitative questions sought information about what participants had gained. Ninety percent of participants reported an increased sense of coping, 85% reported increased involvement in recreation, and 63% reported an increased involvement in social activities. Fewer participants reported increased involvement in work-related activities (47%), improved family relationships (35%), partner relationships (29%), and friendships (47%). Participants rated themselves as significantly more successful, confident, valuable, active, and independent following participation in a course. The study provides some evidence of the benefits of sports participation and teamwork for people with spinal cord injury (SCI).
Key words: spinal cord injuries, sports, recreation, coping, self-perception, residential activity course
Introduction
The benefits of sports participation and other physical recreational activities for the able-bodied population are frequently promoted in the media and widely accepted by those who do, and do not, engage in such activities. These benefits include improved health and life satisfaction (Mancini & Orthner, 1980). In light of the physical consequences of spinal cord injury (SCI) resulting in a more sedentary lifestyle and its associated health risks (Cowell, Squires & Raven, 1986), it has been suggested that sports activity has more relative importance for those individuals who use wheelchairs (Jochheim & Strohkendl, 1973; Jackson & Davis, 1983).
Review of Literature
Post-SCI sports participation and recreational activity is thought to encourage psychological adjustment to injury, reduce depression, (Jacobs, Roswal, Horuat & Gorman, 1990; Monnazzi, 1982; Madorsky & Madorsky, 1983) and improve self-image. Research supports the hypothesis that higher levels of activity are associated with a smaller discrepancy between pre- and post- injury self-concept (Jackson & Davis, 1983; Kennedy & Smith, 1990). In addition, sports participation by individuals with SCI can counteract loss of confidence and mental inactivity (Guttmann, 1976). This results in improved perceptions of physical competence, and self-efficacy in wheelchair mobility (Hedrick, 1985; Greenwood, Dzewaltowski & French, 1990). Satisfaction with leisure pursuits has also been shown to predict life satisfaction (Kinney & Coyle, 1992). Sports participation is considered to contribute to an overall increase in quality of life (Jacobs et al.). Research has demonstrated that sports participation has physiological benefits and results in increased aerobic power (Slater & Meade, 2004). Physical activity also appears to decrease the incidence of urinary tract infections and respiratory infections in individuals with SCI (Slater & Meade). It appears the same benefits of exercise in disease prevention that are seen in the general population are also evident in those with SCI, but further research is needed.
Involvement in sports can also be a catalyst for facilitating social reintegration. Regular physical activity can have substantial social benefits by providing a means of establishing new friendships, sharing experiences, developing social support networks, and reducing handicaps (Monnazzi, 1982; Shephard, 1991; Manns & Chadd, 1999). Sports participation involving individuals with SCI has been reported to re-establish contact with the world-at-large by aiding community integration and improving family relationships (Hanson, Nabavi, & Yuen, 2001; Madorsky & Madorsky, 1983). The opportunity for individuals with disabilities to participate in sports alongside able-bodied peers is of particular value. Specifically, it has been found to have a normalizing effect on disability, reduces social stigmatization and illustrates the full potential of people with disabilities(Shephard). Finally, there are also indications that people with disabilities who partake in sports experience more vocational success, report higher incomes (Foreman, Cull, & Kirkby, 1997; Nakamura, 1973), and have a greater likelihood of employment (Shephard). Nevertheless, several of the studies are dated and recent research in this area is lacking. Guttman (1975) proposed that sports is a factor in the psychological re-adjustment of those who are paralyzed. Conversely, Foreman et al. found post-injury involvement in sports is not specifically associated with indices of psychological adjustment. Clearly, further research is needed to clarify the role of sports participation in psychological adjustment and coping in those with SCI.
In spite of the above benefits, studies have shown a decrease in sports participation following SCI (Kirkby, Cull, & Foreman, 1996; Tasiemski, Bergström, Savic, & Gardner, 2000). This may be due to a number of barriers to post-injury participation such as gaining access to appropriate sporting wheelchairs and learning the new skills involved in wheelchair sports (Wu & Williams, 2001). Consequently, there is a need to raise awareness of sports participation by individuals with SCI, ensure equal access for people with disabilities at sports and recreational facilities, and ensure appropriate coaching. The existence of organizations dedicated to enhancing access and promoting participation of people with disabilities in a range of sports and recreational activities is helping to meet this need. With appropriate support, some outdoor adventure specialists are even able to offer “extreme” sports, such as white water rafting and skiing. One such prominent organization is the Back-Up Trust, a charitable organization based in London and operating in Africa, the United States, Sweden, Wales, London, and Cumbria. Back-Up offers individuals with SCI the opportunity to participate in a variety of challenging, single or multi-activity courses under specialist instruction in an integrated, residential environment. These varied, 1week programs include skiing, horseback riding, waterskiing, canoeing, rappelling, and gliding. The focus is placed on potential ability rather than limitations. Back-Up aims to encourage participants to become reintegrated into the community and rebuild self-confidence, motivation, and independence. Further, a more central mission of Back-Up is to provide a catalyst to proving that paralysis is not a barrier to an active and enjoyable life. The Back-Up Trust provided a portion of the funding for this study.
Problem Statement
Presently, there is a lack of psychological research investigating the effect of outdoor sports on those with SCI. This retrospective study will examine the views of participants with SCI who have participated in a 1-week residential course, which fostered participation in a variety of sports and recreational activities. More specifically, the study will investigate the impact of course participation on coping, involvement in activities, relationships and self- perception, in addition to general benefits of participation.
Methods
Design
A non-experimental study was conducted. It consisted of a written, self-report, retrospective questionnaire.
Setting
This study was conducted at the National Spinal Injuries Centre (NSIC) at Stoke-Mandeville Hospital, Buckinghamshire, U.K. The NSIC provides comprehensive assessment, treatment, and rehabilitation services to individuals who have sustained SCI.
Participants
All individuals with SCI who attended a Back-Up multi- activity week between 1998 and 2002 were sampled. Questionnaires were sent to 208 people on the Back-Up database for whom a mailing address was still available. Seventy-six percent of the sample were males and 23% were females. The mean age was 35.
Measures
Instrumentation included a researcher-developed demographic questionnaire. Other measures included the Impact of Recreation Course Participation Tool, and the Self-Perception Scale modified by these researchers.
Researcher-Developed Demographic Survey. Demographic information was obtained on date of birth, marital status, and injury characteristics including: cause, date, level, and completeness of injury. Location of post-injury rehabilitation and employment status were also extracted.
Impact of Recreation Course Participation. This consisted of five self-report questions using a Likert type scale of 1 to 4 (1 = not at all, 2 = slightly, 3 = somewhat, and 4 = very much), to obtain participants’ views on whether the experience of an activity course had increased his or her sense of coping, involvement in work-related recreation or social activities, or improved relationships with family, friends, or spouse/significant other. These questions were:
(a) Do you think taking part in Back-Up has increased your sense of coping with your injury? (b) Are you more likely to get involved in leisure or recreation activities since taking part in a Back-Up course? (c) Do you think that taking part in the Back-Up course has increased your involvement in work-related activities? (d) Do you think that taking part in a Back-Up course has increased your overall involvement in social activities? and (e) Do you think that taking part in the Back-Up course has improved your relationship with your friends, family, or spouse/significant other? Eight questions assessing qualitative information were also included. These questions assessed participants’ previous experience of Back-Up activity courses, personal gains from participation, and whether they would recommend the course to others.
The Self-Perception Scale (adapted from Gorman, Kennedy, & Hamilton, 1997) These researchers utilized a scale which comprised five descriptors (successful, confident, valuable, active, independent) taken from the 20-item, Self- Perception Scale previously developed by Gorman et al. and used with the SCI population. Participants were asked to retrospectively rate the degree to which each adjective described them before and after participation in a recreation course. Two scores (”me before” and “me after”) were obtained for each of the five descriptors. Ratings were made on a 5-point scale for each descriptor, for example, success (1 = very unsuccessful, 2 = slightly unsuccessful, 3 = neither successful nor unsuccessful, 4 = slightly successful, 5 = very successful) with higher scores reflecting greater association with the descriptor. To date, the reliability and validity of this adapted scale has not been established. To determine this, further data is needed.
Procedure
Questionnaires were sent to 208 participants who had completed a Back-Up course, along with a cover letter explaining the purpose of the study, confidentiality of questionnaire information, and the chance to enter into a random prize drawing. Although the appropriateness of prizes is debated, such incentives are widely utilized in studies. Completion of the questionnaire was taken as consent to participate in the study. Those participants who required assistance in completing the questionnaire were encouraged to request help from their personal assistant. Two weeks after mailing the questionnaires, a follow-up reminder in the form of a letter was sent to participants along with the standard monthly newsletter. The Back-Up Trust Committee approved this study and the procedures described above were in accordance with the ethical standards of the local Research Ethics Committee.
Results
Sample
Eighty of 208 (38.5%) questionnaires were returned. The mean age of the participants was 35 (SD = 10.1, age range = 20–64). Sixty-one (76%) were male and 19 (23%) were female. Over half the participants were single (62%), 21% reported that they were married or living with a partner, and 16% stated that they were divorced or separated.
Injury characteristics
See Table 1. The participants sampled in this study are broadly representative of the United Kingdom SCI population, having a similar male to female ratio, and injury characteristics (Smith, 1999), although participants in this study were found to have a slightly younger average age.
Table 1. Demographic Information for Participants.
Cause of injury:
• Motor vehicle accidents: 40%
• Fall : 21%
• Sports: 21%
• Medical reasons: 8%
• Other: 10%
Mean time since injury (years): 7
Paraplegic/tetraplegic injuries: 57%/43%
Complete/incomplete injuries : 52%/48%
Employed: 90%
Student: 37%
Voluntary work: 32%
Mean Back-Up courses attended: 3
Place of rehabilitation
Participants had undergone initial rehabilitation in a total of 16 different locations, including one overseas. The five most common rehabilitation facilities utilized by participants were: National Spinal Injuries Centre, Aylesbury (28%), The Duke of Cornwall Spinal Treatment Centre, Salisbury (12%), Princess Royal Spinal Injuries Unit, Sheffield (11%), The Spinal Injuries Unit, Stanmore (8%), and Southport Regional Spinal Injuries Centre (8%).
Employment status
Sixty-five (90%) were in paid employment, 27 (36%) were students, and 26 (35%) stated that they took part in voluntary work (including fundraising). A total of 3 participants indicated that they were involved in “other” work activities, one being a retired teacher, one self- employed, and one a freelance designer. A number of respondents were involved in more than one type of activity, and the majority (87%) were involved in at least one type of activity. However, 12% of participants indicated they were not involved in any work-related activities, with one participant stating he was too ill to work.
Course experience
Seventy-eight participants gave information regarding the attendance of previous Back-Up courses. The mean number of Back-Up courses previously attended was 2.9 (SD = 2.7, Range = 1–15). Three participants had undergone training and became course leaders. This proportion (4%) was deemed too low to have created a bias in results. The mean time elapsed since respondents had last attended a Back-Up course was 2 years (SD = 1.3, Range = 1–5 years).
Impact of Course Participation
Acceptance and coping. Frequencies relating to the degree to which course attendance had a positive impact on a sense of coping are shown in Figure 1.
Of those who responded, the majority (84%) agreed, or strongly agreed, with the statement, “I learned that SCI doesn’t have to limit my life” and 72% of participants agreed, or strongly agreed, with the statement, “I learned that people will still accept me and like me despite my disability.” A similar percentage (74%) agreed, or strongly agreed, with the statement, “I learned that an important part of independence is accepting help” and 87% of people agreed, or strongly agreed, with the statement, “I learned that I am capable of more than I thought I was.”
Involvement in activities. Frequencies were calculated on the degree to which course attendance had a positive impact on involvement in work-related and social activities (Figure 2). Sixty-three percent (63%) of participants reported an increase in their involvement with social activities. The majority (85%) reported that participation had increased involvement in leisure/recreation activities. Most participants, however, stated that course attendance had not increased involvement in work related activities (53%).
Improvement in relationships. Frequencies relating to the degree to which course attendance had a positive impact on relationships are shown in Figure 3. The majority of participants (53%–71%) stated that course attendance had not improved their relationships with others.
Self-Perception. Wilcoxon Signed Rank statistical tests were performed to compare retrospective ratings of how successful, confident, valuable, active, and independent participants perceived themselves before and after course attendance. Participants rated themselves as significantly more successful, confident, valuable, active, and independent (p < 0.001), following participation in a course.
Overall change in self-perception was calculated for each individual based on the size and direction of the difference between the "before" and "after" ratings for all five descriptors. Fifty-nine (80%) showed an improvement in self-perception, nine (12%) showed no change, and five (6%) showed a decrease. There was no significant relationship between change in self-perception and age, gender, marital status, injury type, cause of injury, or duration since injury.
General benefits of participation. Seventy-five participants responded when asked about the effect the course had on their rehabilitation. Eighty-seven percent felt course attendance had a positive effect on their rehabilitation, 6% stated that it did not have a positive effect on their rehabilitation, 2% responded they did not know, and 4% responded not applicable. Ninety-four percent responded that they would recommend participation in a course to others with SCI.
Thematic Analysis
A content analysis, conducted by two independent raters, identified common themes within the qualitative data for the three questions shown in Tables 2–4. Qualitative responses indicated that benefits were gained in: a) self- confidence and achievement; b) sense of identity and normality; c) independence; d) improved perception of possibilities and capabilities; e) motivation and inspiration; f) experiencing new activities; g) meeting people and making friends; h) enjoyment and having fun; i) achieving a positive view of disability; and j) skills and knowledge. The same themes were identified for each question, although the number of comments differed. Tables 2–4 further identify participant responses to the questions under investigation.
Table 2. Comments Associated with Common Themes to, “Why would you recommend Back-Up to other people with a spinal cord injury?”
Theme | Number of Comments
Meeting people and | 29
making friendsEnjoyment and fun | 27
Perception of possibilities | 18
and capabilitiesExperience of activities/discovery | 17
of interestsSelf-confidence and sense | 15
of achievementSkills and knowledge | 11
Positive attitude to life and | 7
disability/mental strengthIdentity and sense of normality | 6
Motivation and inspiration | 6
Independence | 3
Other | 14
Table 3. Comments Associated with Common Themes to, “Describe how being involved in Back-Up has had a positive effect on your rehabilitation?”
Theme | Number of Comments
Perception of possibilities | 20
and capabilitiesPositive attitude to life and | 18
disability/ mental strength.Meeting people and | 15
making friendsSelf-confidence and sense | 10
of achievementSkills and knowledge | 10
Motivation and inspiration | 10
Experience of activities/discovery | 7
of interestsIndependence | 7
Enjoyment and fun | 3
Identity and sense of normality | 2
Other | 12
Table 4. Comments Associated with Common Themes to, “What do you feel you have gained from Back-Up?”
Theme | Number of Comments
Self-confidence and sense | 27
of achievementMeeting people and | 26
making friendsPerception of possibilities | 21
and capabilitiesEnjoyment and fun | 17
Positive attitude to life and | 15
disability/mental strength.Motivation and inspiration | 10
Experience of activities/discovery | 10
of interestsIndependence | 8
Identity and sense of normality | 7
Skills and knowledge | 6
Other | 13
Discussion
The aim of this study was to retrospectively evaluate course participants’ perspectives on the experience of attending an organized multi-activity week for people with SCI. Of particular interest was whether course attendance was perceived to have any impact on their lives, their view of themselves, and their injury.
Ninety percent (90%) of participants reported activity course attendance had increased their sense of coping. Course attendance had helped 85% of participants to learn that having SCI does not have to limit their lives, and 72% felt that people will still accept and like them despite their disability. Seventy-four percent (74%) learned that asking for help is an important part of independence; 87% reported they were more capable than they previously thought. The impact of attending an activity course was found to be largely positive.
Interpretation of these results should be made with caution as the retrospective design may have reduced the reliability of responses. The time span between participants attending a course and taking part in the study was up to 5 years. Such a time frame makes it difficult to ascertain whether the benefits reported were attributable to course participation or to some other factor occurring in the participants’ lives within the same time. Therefore, a stronger approach may involve administering the questionnaire immediately after course completion. The response rate of the study was low; 39% of participants who took part in this study cannot be assumed to represent all course attendees. The retrospective nature of this study means that the positive benefits reported may reflect the characteristics of those who chose to participate in the course rather than the benefit of the course itself. Therefore, the sample was potentially subject to selection bias. Indeed, Slater & Meade (2004) who conducted a literature review examining responses to sports after SCI have stated this point. It is possible that those who did not complete questionnaires may have felt particularly negative about Back-Up. Furthermore, these results rely upon only one source of data, that is, participant self-report. As with any self-report study, the generalizability of these findings are limited and could be enhanced with additional reports from relatives or caregivers. An index of more behavioral-based outcome measures could also be utilized. Finally, the validity and reliability of the adapted Self-Perception scale is yet to be fully established. Further prospective research utilizing randomization needs to be conducted using larger cohorts to investigate the effect of sports participation effectively. Standardized measures also need to be used to ensure reliable and valid comparison.
Despite methodological limitations, the findings of this study provide important information about the perceived benefits of taking part in an activity course. It provides evidence of the benefit of sports participation to people with SCI. The absence of such relationships between psychological and demographic aspects has been found in previous research (Kennedy, Gorsuch, & Marsh, 1995; Kennedy, Duff, Evans, & Beedie, 2003); the psychological benefits of sports participation can be achieved regardless of level of injury, gender, and so forth.
The residential course reviews in this study indicate psychological benefits such as increased self-confidence and a sense of accomplishment. Social contact is an important factor in increasing social integration and a key goal to maximizing effective community reintegration. Achievement of this goal may be enhanced through greater provision and marketing of activity courses such as Back-Up.
There are a number of clinical implications for the findings of this study. The first relates to sporting activities as a rich resource within rehabilitation. It is suggested that the incorporation of sports at an appropriate stage within the rehabilitation program would be beneficial to patients in terms of acceptance and self-perception. The second clinical implication relates to the reported increase in social activities following course attendance. In light of this, it is postulated that community educational efforts focusing on the merits of sports participation after SCI may be helpful in attempts to maintain social connectedness once formal rehabilitation has ceased.
Conclusion
The results of this retrospective study provide some evidence that participation in sports and recreational activities can confer psychological and social benefits to individuals with SCI. Principally, these benefits were identified as an increased ability to accept and cope with injury, increased participation in other recreational activities and social activities, improvement in self-perception, and an overall positive effect on rehabilitation. More detailed research, however, is required. These findings indicate increased awareness of SCI sports participation and provision of adequate sports facilities would be beneficial in facilitating rehabilitation and maximizing effective community integration in those with SCI.
Acknowledgements
We would like to thank all those who participated in this study, the Back-Up Trust for partial funding and the Back-Up staff for their involvement in the administration of the questionnaires. Our thanks also go to Charlotte Mackey BSc (Hons) for her contribution in the preparation of the final manuscript.
References
Cowell, L. L., Squires, W. G., & Raven, P. B. (1986). Benefits of aerobic exercise for the paraplegic: A brief review. Medicine and Science in Sports and Exercise, 18(5), 501-508.
Foreman, P., Cull, J., & Kirkby, R. (1997). Sports participation in individuals with spinal cord injury: Demographic and psychological correlates. International Journal of Rehabilitation Research, 20, 159-168.
Gorman, C., Kennedy, P., & Hamilton, L. R. (1997). Alterations in self-perceptions following childhood onset of spinal cord injury. Spinal Cord, 36, 181-185.
Greenwood, M. C., Dzewaltowski, D. A., & French, R. (1990). Self-efficacy and psychological well-being of wheelchair tennis participants and wheelchair nontennis participants. Adapted Physical Activity Quarterly, 7, 12-21.
Guttmann, L. (1975). Sport and the spinal cord sufferer. Nursing Mirror, 141(19), 64–65.
Guttmann, L. (1976). Significance of sport in rehabilitation of spinal paraplegics and tetraplegics. Journal of American Medical Association, 236(2), 195-197.
Hanson, C., Nabavi, D., & Yuen, H. K. (2001). The effects of sports on level of community integration as reported by persons with spinal cord injury. American Journal of Occupational Therapy, 55(3), 332-338.
Hedrick, B.N. (1985). The effect of wheelchair tennis participation and mainstreaming upon the perceptions of competence of physically disabled adolescents. Therapeutic Recreation Journal, 19(2), 34-46.
Jackson, R. W., & Davis, G. M. (1983). The value of sport and recreation for the physically disabled. Orthopaedic Clinics of North America, 14 (2), 301-315.
Jacobs, D. P., Roswal, G. M., Horuat, M. A., & Gorman, D. R. (1990). A Comparison between the psychological profiles of wheelchair athletes, wheelchair nonathletes, and able-bodied athletes. In G. Doll-Tepper, C. Dahms, B. Doll, & H. Von Selzam (Eds.), Adapted physical activity: An interdisciplinary approach (pp. 75-79). Berlin: Springer-Verlag.
Jochheim, K. A., & Strohkendl, H. (1973). The value of particular sports of the wheelchair-disabled in maintaining health of the paraplegic. Paraplegia, 11, 173-178.
Kennedy, D. W., & Smith, R. W. (1990). A comparison of past and future leisure activity participation between spinal cord injured and non-disabled persons. Paraplegia, 28, 130-136.
Kennedy, P., Gorsuch, N., & Marsh, N. (1995). Childhood onset of spinal cord injury: Self-esteem and self-perception. British Journal of Clinical Psychology, 34, 581-588.
Kennedy, P., Duff, J., Evans, M., & Beedie, A. (2003). Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. British Journal of Clinical Psychology, 42, 41-52.
Kinney, W. B., & Coyle, C. P. (1992). Predicting life satisfaction among adults with physical disabilities. Archives of Physical Medicine Rehabilitation, 73, 863-869.
Kirkby, R. J., Cull, J., & Foreman, P. (1996). Association of prelesion sports participation and involvement in wheelchair sports following spinal cord injury. Perceptual and Motor Skills, 82, 481-482.
Madorsky, J. G. B., & Madorsky, A. (1983). Wheelchair racing: Important modality in acute rehabilitation after paraplegia. Archives of Physical Medicine and Rehabilitation, 64, 186-187.
Mancini, J., & Orthner, D. (1980). Situational influences in leisure satisfaction and morale in old age. Journal of the American Geriatrics Society, 8, 466-471.
Manns, P. J., & Chadd, K. E. (1999). Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 80, 1566-1571.
Monnazzi, G. (1982). Paraplegics and sports: A psychological survey. International Journal of Sports Psychology, 13, 85-95.
Nakamura, Y. (1973). Working ability of the paraplegics. Paraplegia, 11, 182-193.
Shephard, R. (1991). Benefits of sport and physical activity for the disabled: Implications for the individual and for society. Scandinavian Journal of Rehabilitative Medicine, 23, 51-59.
Slater, D., & Meade, M. A. (2004). Participation in recreation and sports for persons with spinal cord injury: Review and recommendations. Neurorehabilitation, 19(2), 121-129.
Smith, M. (1999). Making the difference: Efficacy of specialist versus non-specialist management of spinal cord injury. London: Spinal Injury Association.
Tasiemski, T., Bergström, E., Savic, G., & Gardner, B. P. (2000). Sports recreation and employment following spinal cord injury-a pilot study. Spinal Cord, 38(3), 173-184.
Wu, S. K., & Williams, T. (2001). Factors influencing sport participation among athletes with spinal cord injury. Medicine and Science in Sports and Exercise, 33(2), 177-181.
Paul Kennedy, DPhil, is consultant clinical psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury, U.K. and Academic Director, Oxford Doctoral Course in Clinical Psychology, Isis Education Centre, Oxford, U.K.
Lynne Hindson, BSc (Hons), is a trainee clinical psychologist, Oxford Doctoral Course in Clinical Psychology, Isis Education Centre, Oxford, U.K.
Nicola Taylor, BSc (Hons), is assistant psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury, U.K.