Abstract
Objective
To explore gender and sex differences in experiences of transitioning to adult health care among young adults with acquired brain injury (ABI) who take part in a coordinated model of transitional care.
Design
Descriptive design using in-depth semistructured qualitative interviews.
Setting
Interviews over the phone and in person.
Participants
Participants (N=18) included 10 young adults with a diagnosis of ABI (4 women, 6 men; age range, 19–21y) and 9 parents (8 women, 1 man) from the Greater Toronto Area, Ontario, Canada.
Interventions
Not applicable.
Main Outcome Measure
Semistructured interviews with participants.
Results
Our findings highlight several commonalities and differences relative to sex and gender among young adults with ABI who are transitioning from pediatric to adult care. Both young adult men and women experienced a similar transition process and similar organization, continuity, and availability of care. Sex differences were found in relational factors (eg, communication, family involvement, social support). Young adult men, and parents of the men, differed in their transition regarding relational factors (eg, communication, family involvement).
Conclusions
Our findings show that young adult men and women with ABI who have taken part in a transition preparation program experience similarities in organization, continuity, and availability of care, but they experience differences in relational factors (eg, communication, family involvement).
Keywords
List of abbreviations:
ABI (acquired brain injury)Transition to adulthood is an area of concern for young adults with acquired brain injury (ABI). As young adults reach adulthood, their readiness for transition varies.
1
, 2
, 3
Health services are often lacking; there are poor links between pediatric and adult rehabilitation services,3
, 4
, 5
, 6
and the limited availability of appropriate and comprehensive care can pose challenges.4
, 7
, 8
Common barriers to a successful transition include the following: lack of coordinated care, lack of health professionals' knowledge, and lack of preparation for young adults.3
, 6
, 9
, 10
Poor transitions, including gaps in continuity of care, can negatively influence health outcomes and meaningful participation in life.11
, 12
, 13
, 14
Therefore, understanding the transition experiences of young adults with ABI is critical.Unfortunately, few transition models are available to maintain continuity of care for young adults with ABI.
15
To address this gap, 1 pediatric and 1 adult rehabilitation center in Ontario, Canada, partnered to facilitate successful transitions to adult health care.2
They developed a transition model to maintain continuity of coordinated care for young adults with cerebral palsy and ABI.2
, 8
Multiprofessional clinical teams at each facility provide transitional rehabilitative care coordination to young adults and their families, based on the following 4 best-practice principles of health care transition: (1) transition should be gradual and timed; (2) care should be interdisciplinary, comprehensive, and coordinated; (3) young adults and families should be taught skills in disability management and transition readiness; and (4) transition preparation should be person centered, using a holistic approach.2
In evaluating young adults' experiences of this transition model, our study addresses several gaps in the literature. We explore the experiences of young adults who have taken part in a longitudinal (1y) transition program. Among the few studies evaluating transition programs, most have focused on diabetes
9
and have not included a qualitative component. Previous qualitative studies on transition to adult care have often had problems with recall bias.3
, 10
, 16
Our study has captured the transition process, a noted gap in the literature.10
There is also a lack of research on sex and gender differences in transition experiences.Exploring sex and gender differences among young adults with ABI as they transition to adult health care is important because sex and gender influences many ABI outcomes,
17
, 18
reflecting differences in biochemical and brain functioning and socioemotional responses to coping with injury.19
, 20
, 21
, 22
, 23
, 24
Although research on sex/gender and ABI is growing, most studies have focused on adults. Among the few studies on ABI involving young adults, findings suggest girls have a more emotional style of coping, whereas boys tend to demonstrate anxiety or aggression.25
Methods
Design
This article draws on a larger, mixed-method, longitudinal study exploring continuity of care among young adults with cerebral palsy and ABI (see Tsybina et al
8
). As part of the study's outcome evaluation, young adults and parents consented to participate in a qualitative interview exploring changes in health and social services and transition experiences. In this article we draw on those interview findings to explore sex and gender differences in experiences of transitioning to adult health care among young adults with ABI participating in a linked model of transitional care.Sample and recruitment
The Research Ethics Boards at Holland Bloorview Kids Rehabilitation Hospital, Toronto Rehabilitation Institute, and Sunnybrook Health Sciences Centre approved this study. Clients of Holland Bloorview who turned 16 years of age between September 2008 and August 2010, who had a primary diagnosis of ABI, and who received transition services were eligible to participate.
8
The research team sent an information letter to all eligible clients (n=88), and they contacted consenting young adults and parents after the client's eighteenth birthday to arrange an interview.8
Participants
The research team interviewed 10 young adults (6 men, 4 women) diagnosed with ABI (age range, 19–21y) and 9 of their parents (8 women, 1 man) from Ontario, Canada (table 1). One young adult in the parent–young adult dyads could not be interviewed because of their cognitive level of functioning. The cause of ABI varied among participants. Of the young adults, all 4 women and 5 of the 6 men lived at home. Five of the young adults (3 of the 4 women, 2 of the 6 men) were attending college, 2 men were attending high school, and the remainder were not attending school.
Table 1Overview of participant characteristics
| Identification No. | Sex | Age (y) | Diagnosis | Transition Status | Job/School | Where Living |
|---|---|---|---|---|---|---|
| 1 (young adult) | Female | 19 | Viral encephalitis | Not transitioned (waiting for referral) | In college; not working | Living at home |
| 2a (young adult) 2b (parent) | Female | 20 | Encephalitis (postinfluenza) | Transitioned | In college; not working | Living at home |
| 3a (young adult) 3b (parent) | Female | 20 | Postconcussion syndrome | Transitioned | In university; working | Living at home |
| 4a (young adult) 4b (parent) | Female | 21 | Traumatic brain injury (skull fracture) | Transitioned | Not in school; not working | Living at home |
| 5a (young adult) 5b (parent) | Male | 19 | Shaken baby syndrome | Not transitioned | In college; not working | Living at home |
| 6b (parent) | Male | 19 | Traumatic brain injury | Not transitioned | In high school; not working | Living at home |
| 7a (young adult) | Male | 21 | Traumatic brain injury (skull fracture) | Transitioned | In university; not working | Lives on his own (during school term) |
| 8a (young adult) 8b (parent) | Male | 20 | Stroke | Transitioned | Volunteering; not in school | Living at home |
| 9a (young adult) 9b (parent) | Male | 20 | Subdural hematoma | Transitioned | Working; not in school | Living at home |
| 10a (young adult) 10b (parent) | Male | 19 | Meningitis (middle cerebral artery infarct) | Transitioned | In high school; working | Living at home |
Data collection
We conducted interviews with parents and young adults, lasting an average of 29 minutes each, between June and September 2013. We used a semistructured interview guide, with questions influenced by transition principles.
2
We used probes to draw out experiences of transition readiness and sex/gender (appendix 1).Data analysis
Interviews were audio recorded and transcribed verbatim. The 4 authors trained in qualitative research independently read all transcripts and noted key themes. Using our research question as a guide, we used a constant comparative, open-coding approach. We took measures to ensure the rigor and trustworthiness of our findings. First, 4 of the authors were involved in coding data and verifying themes. Second, we engaged in reflexive team discussions to consider how our experiences may have influenced our interpretation of findings., Third, we kept an audit trail of decisions regarding theme development. Finally, we used representative quotes to reflect participants' experiences.
Results
Our findings highlight the structural, relational, and personal barriers and facilitators that young adults experienced during their transition to adult health care (table 2).
Table 2Overview of themes by participant
| Themes | Females | Discrepancy Between Parent/Young Adult Report | Males | Discrepancy Between Parent/Young Adult Report |
|---|---|---|---|---|
| Structural | ||||
| Continuity of care | 4 | 0 | 6 | 0 |
| Availability of care | 4 | 0 | 4 | 1 |
| Organization of care | 3 | 0 | 5 | 0 |
| Practice differences | 0 | 0 | 0 | 0 |
| Transition to school/work | 0 | 0 | 2 | 0 |
| Relational | ||||
| Communication | 2 | 0 | 2 | 1 |
| Trust/rapport | 2 | 2 | 0 | 1 |
| Same-sex provider | 3 | 0 | 0 | 0 |
| Family involvement | 4 | 0 | 4 | 2 |
| Social support | 4 | 0 | 0 | 1 |
| Self-management | 2 | 2 | 3 | 0 |
| Attachment to pediatric providers | 4 | 0 | 5 | 0 |
| Personal | ||||
| Transition readiness | 2 | 0 | 0 | 2 |
| Parent challenges | 0 | 0 | 3 | 0 |
| Young adult challenges | 1 | 0 | 5 | 0 |
| Health maintenance | 2 | 2 | 2 | 1 |
| Risky behavior | 0 | 1 | 0 | 2 |
Structural factors
Organization and continuity of care
At the time of our interviews, 7 young adults (3 women, 4 men) had transitioned to adult care; 1 woman was on a waitlist; and 2 men had not yet transitioned. Transitioned young adults said they were connected with the appropriate providers in the adult system, and all the transitioned participants reported experiencing continuity of care. For example, 1 parent (participant 3b) reported, “I thought the information followed her…I didn't feel like we were starting from her first concussion.” In the young adult group, 3 out of 4 women and 5 out of 6 men described the transition as well organized. Young adults who reported a negative transition experience (1 woman, 1 man) wanted information to be more understandable, and they wanted more follow-up from pediatric providers.
Availability of care
In the young adult group, all but 2 men said that transition support and access to adult services were available. One man (participant 8a) felt the transition program was not helpful or needed, whereas the other man (participant 9a) lived much further away and found the program difficult to access.
Practice differences
Practice differences between pediatric and adult health care were also noted by all 4 woman and 4 of the 6 men. For example, 1 man (participant 7a) said, “you have to get used to seeing people not your age…these people are a lot older than me; why am I here?”
Transition to school and work
Young adults expressed concern over the lack of availability of support for transitioning to school and work. Among the young adults, all 4 women and 3 of the 6 men lacked information and support on how to navigate disability services and accommodations at college. For example, 1 parent (participant 10b) reported the following: “Where we needed more guidance, it would have been great to have had some help for us identifying what to do on his educational path.”
Three parents mentioned that young adults with ABI need help finding meaningful employment or postsecondary education programs. For example, 1 parent (participant 5b) said, “I find a lot of them [young adults with ABI], they don't know what to do; they're lost, and they sit at home; they do nothing.” Another parent (participant 4b) told us, “She was having difficulties with school ending…she convinced herself she was unemployable…She was having a hard time, and it was hurting me too.”
Relational factors
Trust and rapport
Among the young adults, all 4 women and 5 of the 6 men told us about the trusting relations they built with their pediatric providers, noting they were “sad to leave the pediatric system” (participant 1). Two young women and 1 young man had concerns about developing a rapport with new adult health providers; meanwhile, 2 women said they were optimistic about developing new relations.
Three out of 4 young adult women said they would be more comfortable having a provider who was a woman for certain issues. One young woman who had recently transitioned said, “It was easier to talk to her because the nurse practitioner was a woman…It didn't really matter, but when I hit my head, my period stuff changed. So, that was awkward…If I had a male doctor…I would have to break the ice” (participant 3a).
A parent of another young woman also described the importance of having a health provider who was a woman: “She always wants a woman doctor for starters…She hates anybody to touch her. He [the doctor] wanted her to roll her track pants down a bit to check her back. She wouldn't do that. She wouldn't put the gown on. So finally he just said, I'll just do an assessment with your clothes on” (participant 4a).
None of the young men mentioned a preference for a particular sex of health care provider, but 4 of the 6 young men said they were comfortable with their new adult providers. For example, 1 young man (participant 7a) told us, “Guys are kinda prideful and we don't want to say we need help with stuff…but it's fine here. You don't feel like you're losing your ‘manhood’ asking for help.”
Family involvement
Notable sex and gender differences arose in family involvement in the transition process. All 4 young women had positive experiences of their family being involved in their transition, providing social support, and encouraging independence in their care. Meanwhile, although 4 of the 6 young men also reported family involvement, they did not mention the role of social support in their transition.
In regard to young adults increasing their responsibility for their own care, all 4 young women and their parents said they were confident about managing their care compared with 2 of the 6 young men. For instance, 1 young woman said, “When I was younger, my mom would say you have to go out and be social, but I just do those things on my own now…I tell her I want to make an appointment, then, I'll deal with it” (participant 4a).
Four out of 6 young men with ABI had a shared management approach, where they relied on parents for support for things (eg, arranging appointments, reminding them about medications). Once young adults are in the adult system, they can decide whether they want their parents there. One young man (participant 7a) described his confidence in managing his care after transitioning, “it's nice to have your independence when you go in there and talk about what you need to talk about.” Two parents (participants 8b and 9b) of men with ABI mentioned the transition process was difficult for them because they were used to talking for their sons during health visits.
Four parents of young men had a difficult time fostering independence in their child. For example, 1 parent (participant 9b) of a young man said, “my concern is…some of the challenges he has are that he'll be motivated to care for himself.” Similarly, one man with ABI (participant 7a) said he needed reminders when it came to managing his own care: “sometimes you get busy, but then my mom is really keen on making sure you go to your appointments and everything.”
Personal factors
Transition readiness
Young adults' readiness to transition to the adult health care system varied. Two of 4 young women and 3 of 6 young men felt ready to transition. For instance, one woman (participant 1) said, “I was ready [to transition] cause I'm on the right track…I don't see a difference. It's just another facility and I'm sure I'll gain good relationships the same way I did at [pediatric hospital].” Three men did not feel ready to transition and wanted more support beyond 18 years of age. They felt leaving the pediatric system at 18 was too young to be making independent decisions about their care. One parent (participant 8b) of a young man with ABI said, “He was ready to move from [pediatric hospital]…it was a hard transition, more for me than for him…they treat him like an adult and he doesn't function as an adult.” One young woman and 2 young men found the transition challenging.
Health maintenance and coping with ABI
Of the participants, both young men and young women had different ways of maintaining their health. Three of 4 young women emphasized the importance of friends, social support, and involvement in other activities to keep them healthy. For example, 1 woman (participant 1) said, “I would say exercise…extracurricular activities…I'm a big factor of my health…making sure stress is low, I'm eating properly…Basically just being a support system.” Three out of 6 young men, on the other hand, described exercise and sports as a means of maintaining their health.
Coping strategies for dealing with ABI also differed by sex. Two young men and their parents described signs of denial or wanting to keep their ABI hidden. For instance, 1 young man (participant 10a) said, “I just don't think I need it ‘cause my disability doesn't affect me in any way. No-one knows…it's not shown in any aspect of my body.” Such coping strategies were concerning for parents. For example, 1 parent (participant 6b) of a young man with ABI told us the following:
He leaves here and he drinks all night and he sleeps all day…I think he's into something more than just smoking weed…When he comes home he'll gorge on food and have a nap and he's back out the door…Health-wise, he's failing…He's come home numerous times and he's had accidents…You can't afford to have any more concussions…but he's almost gone to the point where it's like he's such a big risk taker.
This parent suggested her son was regressing socially after his ABI.
An aspect of coping with ABI that many young adults had to contend with was depression. In particular, 2 young women and 1 young man described the challenges they had in coping with ABI. One young woman was struggling with school, had difficulty managing her health, and was depressed because she was unable to find a job. Another engaged in self-harm because of her depression. Her mom (participant 2b) explained, “prior to the anti-depressant medication…she used to complain some bad pictures showing up in her mind…and she's tried to cut herself many times.” Another young man (participant 9a) who experienced depression said young adults with ABI may need more motivation because they are still coping with their injury. He mentioned that “People with brain injuries that take anti-depressants, they don't need motivation…a lot of people depending on how bad their accident was, they're down and depressed.”
Discussion
Structural factors
Our findings highlight commonalities and differences among young adults with ABI who are transitioning from pediatric to adult care. For the most part, both young adults and their parents experienced a positive transition process and well-organized, continuous, and available care. This contrasts with past research on transition to adulthood among other chronic conditions, which highlights barriers in these areas.
1
, 2
, 3
, 4
We argue that the positive experiences of young adults in our sample might be attributed to their involvement in a transition program.Relational factors
We found notable sex differences in relational factors affecting young adults and their parents, including communication and trust of health providers.
29
In our study, young women expressed a preference for same-sex health care professionals, which young men did not demonstrate. Previous research suggests sex preference for health providers is often linked to the provision of care in intimate and psychosocial health problems.30
Among young adults, the responsibility for managing one's health is negotiated with parents and shaped by health care providers.
31
Previous research on self-management of ABI among adults found that women had higher perceived self-management skills than men—a difference that leveled out after participation in a self-management intervention.32
We found that young women emphasized the importance of social support, whereas young men reported engagement in physical exercise as a means of maintaining health. Similarly, some findings
33
on young men with cystic fibrosis demonstrate a tendency for men to avoid talking about emotions and focus on physical activity as a means to maintain health. Consistent evidence shows that social support plays a larger role in shaping women's health than men's health, and it is linked with better health outcomes.Personal factors
Regarding coping strategies, we found that both men and women experienced depression, which is common after ABI. A few young adults, both men and women, engaged in risky behavior; however, the type of risky behavior differed by sex. This is consistent with past research, which shows that sex is a significant predictor of coping. Evidence shows that men tend to use more avoidance-coping strategies, and they are more likely to engage in activities that threaten their health (eg, illicit drug use). Further work should explore avoidance-coping strategies among young adult women with ABI.
Program implications
The transition program in which these young adults participated adequately addressed health care needs and continuity of health care; however, further work is needed to link young adults to appropriate resources connecting them to disability services at college. Past research shows that young adults with ABI who receive transition services linking them to disability services at school were more likely to complete postsecondary programs.
35
Our findings are consistent with previous research36
showing that young adults with ABI may lack educational and job support postdischarge and could benefit from further resources.36
, 37
Past research on women with disabilities suggests that they have different experiences than men related to the type of transition goals established and the factors shaping those goals (ie, self-perception, mentors, peers, family, exposure to opportunities).
38
Further research is needed in this area to understand sex/gender differences in transition readiness among young adults with ABI, including how transition programs can meet their needs.Study limitations
This qualitative study is limited in that the findings are not generalizable beyond the study's sample. Nevertheless, our sample size is consistent with qualitative research methodology. The results are speculative given that young adults were interviewed only at the end of the program and not at program entry. Moreover, the parent–young adult dyad interviews helped to provide deeper insight into transition experiences, representing a strength of the study. Second, all but one of the parents interviewed were women. As such, mothers' perspectives are primarily captured. Future work should explore fathers' perspectives of their child's transition experience to adult care. Third, the sample included a wide range of ABI severity and age at onset. Further research should explore how this may impact transitions.
Conclusions
Our findings highlight that young adult men and women with ABI who have taken part in a longitudinal transition program experience similarities in continuity of care, organization of care, and availability of care, but they experience differences in relational factors (eg, communication, family involvement). A strength of this study is that it provides perspectives of a small group of young adults who have experienced ABI and suggests that there may be differences in how men and women view the transition experience.
Acknowledgments
We thank Shauna Kingsnorth, PhD, for her guidance on the Lifespan Evaluation Team study and Natasha Van Borek, MA, research coordinator, for conducting the interviews.
Apppendix 1. Young adult interview guide
- 1.The first set of questions I have for you are about your experience with moving from pediatric to adult care. a. Have you moved to adult care?
Tabled
1
|
|
- 2.I would like to hear about your experience leaving pediatric care—tell me about your last visit (Probe for feelings of readiness, timing, fears/areas of confidence)
- a.Did/do you feel ready to move to adult care? What helped and/or was missing? (Probe for transition documents, any education/skill development opportunities)
- b.Who helped you the most with your (upcoming) move to adult care? How so? (Probe for specific health care professional role, not a specific person; what did they talk about/do?)
- a.
- 3.I would like to hear about your move to adult care—tell me about your (ideal) first visit (Probe for feelings of readiness, timing, fears/areas of confidence)
- a.Who have you seen/would you like to see in adult care? What about that role is important to you? (Probe for cross-appointed roles)
- i.Do you feel they knew/will know about your medical history?
- i.
- b.Have you noticed/do you think there will be any differences in the care you receive now that you have left (pediatric care)? (Probe for positives/negatives of pediatric/adult care, have needs been met, experiences/care offered by different professionals, knowledge/skill building opportunities)
- a.
- 4.What else do you need to do to make sure you stay healthy (eg, see a family doctor/walk-in clinics, nutritionist, or participate on sports teams, volunteering, employment)?
- a.Who connected you with these people or programs?
- i.(If allied health professional) Do you feel they are informed of your medical history?
- i.
- b.Have the services/will the services you receive or participate in changed/change since you have moved to adult care? How so?
- a.
- 5.When you were at [pediatric hospital], what would you say was your role in managing your health/condition (eg, booking appointments, attending appointments alone, managing medications, asking health questions)? Your parents'/your health care providers' role?
- a.How have these roles changed/do you feel these roles will change since you left (pediatric care)? (Probe for challenges or successes)
- a.
- 6.Thinking about your health care, if you could change one thing or keep one thing the same about your (upcoming) move from pediatric to adult care, what might that be?
- a.What advice would you give to others in the same circumstances (Probe for whether participant would recommend a transition model, such as Living Independently and Fully Engaged vs transitioning independently)?
- a.
- 7.Is there anything else you would like to tell me about your move to adult services or experience in leaving pediatric care? (Probe for suggestions for changing the transition to care process)
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Article Info
Publication History
Published online: February 04, 2015
Footnotes
Supported by the Ontario Neurotrauma Foundation and the Canadian Institutes of Health Research (CGW-126580).
Clinical Trial Registration No.: NCT00975338.
Publication of this article was supported by the American Congress of Rehabilitation Medicine.
Disclosures: none.
Identification
Copyright
© 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
