Listening To The Patients: Another Approach To Understanding Transition To Adulthood
LISTENING TO THE PATIENTS: ANOTHER APPROACH TO UNDERSTANDING TRANSITION TO ADULTHOOD
Caroline J. Anderson, PhD; and Lawrence C. Vogel, MD
Introduction
When children or adolescents with spinal cord injury (SCI) receive rehabilitation and follow-up care through a facility that specializes in pediatric rehabilitation, the goal is to provide care that is developmentally-based and geared to the changing needs of children as they grow. A primary challenge for pediatric facilities, however, is to gradually prepare patients and families to transition from the pediatric focus to permanent discharge. It is essential that patients are ready to attain adult health care and move smoothly into adult lives that will be productive and satisfying. A key way to determine how well these individuals are doing as adults is to undertake long-term outcome studies to identify how many of these adults with pediatric-onset SCI, for example, are living independently, are participating in the community, are satisfied with their employment opportunities, are free of medical complication, and have a high quality of life (Vogel & Anderson, 2000; Anderson & Vogel, 2000; Vogel, Krajci, & Anderson, 2002; Anderson, Krajci, & Vogel, 2003; Anderson, Vogel, Betz, & Willis, 2004). These studies provide statistical information that is critical in identifying areas of strength and weakness that can be used to improve rehabilitation programs.
Another approach to understanding the critical aspects of adult transition is to ask former patients, who are now adults, about their own transition experiences. Using open-ended topics as guidelines is an opportunity for the consumers to raise the issues most important to their lives. They can become educators and teach the SCI team about transition to adulthood from the perspective of those who have been through it, or are well on their way.
Our facility recently hosted a day-long SCI round table discussion about transition to adulthood. The 12 adult participants included in the discussion were former SCI patients. They ranged from 23- to 42-years-old (mean age, 29; median age, 27). There were seven females, five males; six with tetraplegia, six with paraplegia. The SCI adults were divided into two discussion groups, facilitated by either the SCI medical director or the clinical psychologist. Topics were assigned for each 45-minute segment and discussion flourished. Some of the highlights are summarized below.
Transition to Adult SCI Health Care
Although one individual had periodic inpatient evaluations by a multidisciplinary SCI team, all others were seen by a primary care physician and specialists who were not necessarily very knowledgeable about SCI and without a team approach as previously experienced in the pediatric facility. Many individuals felt they were the teachers explaining SCI to their physicians. Some of the negative experiences included examination tables that were not accessible to wheelchair users, no wheelchair accessible scales for measuring body weight, and physicians who were not willing to treat common non-SCI-related medical conditions. The participants suggested that it would have been helpful for the opportunity to have the first appointment with adult health care providers while they were still patients at the pediatric facility. They felt this overlap would have provided a smoother health care transition. Patients also suggested that pediatric SCI physicians should provide guidelines related to treatment recommendations and their frequency, such as a listing of recommended routine urological procedures for patients with SCI. Since many of these young adults with SCI have made frequent moves about the country, they also wanted resources for obtaining names of primary care physicians and specialists throughout the country who had expertise and/or willingness to work with individuals with SCI. Discussion also identified the fact that there are official lists of physicians who are members of national SCI organizations (such as American Paraplegia Society or American Spinal Injury Association) or who have passed specialized SCI-Board exams. Some individuals felt that it would be helpful for the ability to communicate among them when they found physicians who were particularly helpful to those with SCI.
Transition to Education and Employment
Experiences with vocational rehabilitation services varied. Vocation rehabilitation services are federally-funded and administered at the state level. The goal of these programs is to help individuals with disabilities become employed, and often that means helping with college expenses and other training. All participants felt it was worth the effort to look into these services. Most individuals had enjoyed their college experiences and had few SCI-related problems, although they stressed the importance of visiting campuses to evaluate accessibility and advocate for their needs. They felt that education beyond high school was an important transition step. Those who lived at school felt that it provided a good transition to independent living. Most of the participants were employed and agreed that well-paying jobs with health benefits are key, especially because individuals with SCI are more likely to need health services than others of the same age. None of the patients were denied health insurance because of a previously existing condition and none felt that they were not paid as well as others doing the same job. Some reported limitations to accepting jobs because of environmental accessibility issues. For example, one woman reported that she would not take a position if there were not private bathroom facilities available and others said they would require indoor parking and handicap accessible parking spaces. Some individuals changed their way of managing SCI-related issues to help them succeed in the work place. This included abandoning intermittent catheterization for condom catheters or suprapubic catheters which were easier to manage in the workplace. None felt that SCI limited their opportunities for promotion. Some had employment positions that had nothing to do with disabilities while others had taken positions in which their experience with SCI was an advantage, such as case management. The participants felt that more job experiences and internships prior to adulthood would have helped them better prepare for employment.
On an interesting note, one recent college graduate had the experience of traveling abroad to Japan on an exchange program in which people from various countries share experiences of living with disabilities. He and another participant who had traveled in Europe on a similar program-both have tetraplegia-found traveling abroad thoroughly enjoyable. Like many young people without disabilities they were eager to continue traveling even if it meant postponing career plans.
Independent Living
Most participants lived independently, either alone, or with spouses, friends, or assistants. A big issue was the added expense of finding living accommodations that were wheelchair accessible. These included factors such as needing modern buildings with wider hallways; larger, accessible bathrooms; elevator buildings; and buildings with indoor garages. The time needed to search for accommodations was typically longer because of the SCI-related issues. All agreed there was limited reliability as to what a realtor or owner reported as accessible. The issue of home modification and its relation to increasing/decreasing property value was a concern for those who owned homes, particularly since young adults tend to move.
Recreation and Leisure Activities
Some participants like many others their age felt that, as their work and family responsibilities increased, they had less time for recreation and exercise. Others felt discouraged by the comparatively high cost of sports chairs, finding accessible workout facilities, or traveling to participate in wheelchair sports. They felt this made many recreational activities prohibitively expensive for them compared to their non-disabled peers. They also recommended that pediatric rehabilitation should focus on a wide range of recreation and leisure activities, particularly those that do not require specialized equipment and are available to anyone locally. Many felt that typical leisure areas, such as movie theatres, bars, and shopping malls were becoming more barrier-free.
Socialization, Dating, and Sexuality
These were topics that the participants especially wanted to have more time to discuss. Although they were all many years, and even decades, past injury they still noted the repetitious comments made to them in public: “I wish I had one of those (wheelchairs)” or “Slow down, I’ll give you a ticket.” Some noted that others used their chair as though it were common property, hanging things on the chair, asking them to carry packages on their lap, or using the rear wheels as foot rests. Most noted that they had few problems with friends, but dating was a big issue. Both males and females felt that dating in a chair was easier for females than males since traditionally males would be opening doors and assisting females. That role might be reversed if the male was using a wheelchair. One male felt that dating was the hardest issue after SCI. Knowing how and when to talk with a date about SCI and sexuality were also issues. Some who need assistance with care felt that they would not want their significant other or spouse to provide personal care and would like to separate sexuality from personal care issues. Most would have liked to have more sexuality teaching and mentors during their adolescent years.
Summary
The participants felt the most important and difficult areas of transition were dating, sexuality, employment, adult fitness, and recreation. The honesty of the participants in discussing transition issues was much appreciated, and their comments will be included in strategic planning. The authors recommend this process of receiving feedback from patients and note an additional benefit; the participants appreciated meeting others with SCI and learned from each other. They were all valuable teachers to us.
References
Anderson, C. J., Krajci, K. A., & Vogel, L. C. (2003). Community integration among adults with spinal cord injuries sustained as children or adolescents. Developmental Medicine and Child Neurology, 45, 129-134.
Anderson, C. J., Vogel, L. C., Betz, R. R., & Willis, K. M. (2004). Overview of adult outcomes in pediatric-onset spinal cord injuries: Implications for transition to adulthood. The Journal of Spinal Cord Medicine, 27(Supplement 1), S98-S106.
Anderson C. J. & Vogel, L. C. (2000). Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Archives of Physical Medicine and Rehabilitation, 83, 791-801.
Vogel, L. C. & Anderson, C. J. (2000). Adult outcomes and life satisfaction of pediatric-onset spinal cord injuries: Implications. Topics of Spinal Cord Injury Rehabilitation, 6, 182-187.
Vogel, L. C., Krajci, K. A., & Anderson, C. J. (2002). Adults with pediatric-onset spinal cord injuries. Part 3: Impact of medical complications. The Journal of Spinal Cord Medicine, 25, 297-303.
Caroline Anderson, PhD, is a clinical psychologist at Shriners Hospitals for Children, Chicago, Illinois.
Lawrence C. Vogel, MD is medical director of the SCI Program, and chief of pediatrics at Shriners Hospitals for Children, Chicago, IL.
Lisa Merenda, MSN, RN, CRRN, clinical research nurse at Shriners Hospitals for Children in Philadelphia, Pennsylvania and editor of Pediatric Perspectives, welcomes your input. Please send comments, questions, and suggestions to lmerenda@shrinenet.org