Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Although our health system has made great strides in clinical technologies, it has been largely ineffective in service delivery for the large and growing population of individuals with disabilities and children with special needs. While the field of pediatrics has addressed issues of children and families when facing a life of limitations or health problems, as the children age through adolescents and transition into adulthood, the service delivery system and fragmentation of adult services serving this population continue to create barriers to care. It is time for organized nursing to step up and champion the research and practice needed to lead the changes necessary for minimizing disparities and facilitating transition.

In this interview, the lead author, Dr. Cecily Betz adds commentary to the articles published in Nursing Outlook and advocates vociferously for nursing to get engaged in the research and practice of this emerging science. She discusses how nursing has a unique opportunity to make positive differences in all adolescents and emerging adults with special health care needs. Nursing needs to be visibly present and the time is ideal!

Cecily L. Betz, PhD, RN, FAAN is an Associate Professor, University of Southern California (USC) Keck School of Medicine, and the Department of Pediatrics and Nursing Director/Research Director at the USC UCEDD at CHLA. She is also the Director of the Spina Bifida Transition Program. For over 20 years, Dr. Betz has been the Editor-in-Chief of the Journal of Pediatric Nursing, and a prolific writer and speaker on issues pertaining to children with special health care needs. She was the co-chairperson of the American Academy of Nursing (AAN) Expert Panel on Children, Adolescents and Families (CAF) and co-author of the AAN-CAF Guidelines for Health Care of Children.

See the full article published in NURSING OUTLOOK at:

Betz, C. L. (2013). Health care transition for adolescents with special health care needs: Where’s nursing? Nursing Outlook, 61(5), 258-265.

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN
Editor/Moderator

CecilyBetz

Cecily L. Betz, PhD, RN, FAAN

Associate Professor, University of Southern California

Keck School of Medicine, Department of Pediatrics

Nursing Director/Research Director, USC UCEDD at CHLA

Director, Spina Bifida Transition Program

Editor-in-Chief, Journal of Pediatric Nursing

Question 1. Why did your team select this question for investigation?

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Our team was interested in looking at the needs as we understand it from an empirical perspective. What were the concerns of adolescents and emerging adults with special health care needs as they transfer in, and transfer to adult care, but also as they transition to adulthood? This is a particularly relevant issue as somewhere between (the estimates are not exact) somewhere between 500,000 and 750,000 emerging adults with special health care needs actually transition into adulthood. Those are enormous numbers. And in fact, for a couple of groups, adults with cerebral palsy and those with congenital heart defects (actually the adult numbers are greater than those for children and adolescents). So that is a very significant shift in the way that health services have been conceptualized.

So we wanted to know more about how this phenomenon is affecting adolescents directly. That was one of our questions that we had as we looked at the literature. What we did (and the details of the process of our systematic review are identified in our article), however, we ended up ultimately with 35 articles that were appropriate for our review. There were a couple of things that we found that were unexpected and that was in terms of the research designs and methodologies.

First of all, we found that it was hard to really locate or identify just what were the age groups that were studied. There seemed to be very diverse sampling techniques used. So we have some studies (approximately 9 of them) that looked at those adolescents between the ages (early adolescence and emerging adulthood) 9 to 21 who were sampled who were actually going through the process. Then there were about six studies where there were combinations of adolescents and emerging adults who were currently undergoing transition or in the process itself, and those who had been through the process. And then lastly there was a group sampled who provided retrospective impressions and perceptions of their experience. What was particularly interesting to us was that of the studies, (there were 35), 10 of those were conducted in the United States. The majority – about 60% of the studies – were conducted internationally, and their system of care is very different than the U.S. system of care. So that was an underlying factor to consider as we were analyzing these responses of adolescents. And interestingly too, when we looked at what did we learn from the adolescents in the U.S., which would be most pertinent to nurses in the states, they sampled actually rare populations for the most part: adolescents and emerging adults with solid transplants, those with sickle cell disease, those with JRA, and not some of the other populations of adolescents and emerging adults with special health care needs that you would typically think would be part of this systematic review – that you would find in these studies. And interestingly, several groups of teams that were part of our analysis from those recruited in the states were those enrolled in the mental health system, some recruited from school settings, and foster care. So actually it was just half of the studies of those that were reviewed that originated in the United States were conducted in clinical settings. So in a sense we know very little.

Question 2. Were there unexpected findings generated from your systematic review?

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There were several of them:

1. First of all, we found that the findings of this systematic review were very similar to those reviews conducted earlier, approximately 10 years ago. It reflects, still, an area of practice and an area of research that are in the seminal stages of development.

2. The majority of studies that we reviewed, approximately 60% were conducted internationally. And of those studies conducted in the United States which were 10 (about a third), half of those studies were conducted in clinical settings. So in essence we really don’t have much data to inform us as to what really the needs, the experiences of adolescents and emerging adults are as it pertains to this very important process of transfer to adult health care and transition to adulthood.

Other things we found too that are important to consider when we are talking about our findings was the fact that with the exception of one study, which was a program evaluation, they were all descriptive designs. There were problems with psychometrics. For example, if an interview schedule was used, the process for developing that interview was not really described. Tools with weak psychometrics were used. But all of this reflects the emerging science and practice of healthcare transition.

As we looked at this, there were several areas that emerged, themes that were evident. And those were the recommendations for healthcare transition planning (what was important to them):

1.  They needed more information and more information not only about their condition but also in terms of clinical management; self-management was considered to be very important; more information about the adult system of care. And importantly too, when you’re thinking about working with adolescents in terms of clinical implications, we sometimes make assumptions that are not necessarily warranted developmentally when we’re talking about adolescents and emerging adults because it’s more difficult for them developmentally to conceptualize.

2. Other areas that we found were the adolescents own reflections of their transition experience in terms of: Was it a positive experience? Was it an experience that was fraught with challenges? And we sort of found across the spectrum perceptions that for some, it was a very positive experience, and some would describe it as transformative. Others found it more difficult. They felt unprepared. And I think you can go back and look at how those experiences might inform us as service providers how to better prepare adolescents and emerging adults for their transfer of care to adult care and also their transition to adulthood.

3. Another theme that we extrapolated from these studies was the obstacles and problems. Some of these really related to the changes in the adult system of care in contrast to what they were obviously exposed to and experienced in the pediatric healthcare system. For example, many of the services that they had as pediatric patients – OT, PT, nutrition services – were no longer available in the adult system. The adult system was organized differently, it looked different, it wasn’t as inviting or warm. Those  were issues that had they been better prepared it may not have been so difficult for them to navigate. Again this goes back to this theme of improved and better preparation for what are going to be very significant changes.

4. Another theme was the expectations related to the eventual transfer to adult care. For some it was so ambiguous they were fearful about: What is this going to do to my own health status? Will I anticipate some serious health changes with my condition? Is my condition going to deteriorate and how will that affect then my lifestyle? Some were very worried and insecure. If we look at this, we can see that having very directed, thorough and consistent preparation to support adolescents and young people as to what to expect, and to talk to them very candidly about what the future holds for them, would be helpful to them.

5. The final theme was becoming self-reliant with their special health care need. It was issues related to their concerns, or perhaps their confidence as it pertained to how they would manage their health needs and frankly their lifestyles. However, evident throughout, and this was actually why we chose the title “voices not heard,” was that adolescents and emerging adults throughout all of these studies that we reviewed, it was really evident that they weren’t being heard. That they weren’t the full partners!

Question 3. What are the research implications of this work?

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There are some implications based on what are findings were. Some of this is predicated on the fact that this is an emerging area of practice and research. There aren’t at this point in time and evidence based guidelines to assist providers in terms of development of services and perhaps the discipline that has advanced more thinking and recommendations in this area has been pediatrics.

There really hasn’t been much in terms of recommendations or practice guidelines from the other disciplines, nursing being prominent in that regard. And until we have the evidence needed to help direct us in terms of what is helpful, what will support adolescents and emerging adults, we’re going to continue to rely on expert opinion in terms of the evidence that exists. And this certainly too goes back to the need for more systematic and rigorous research designs; that we have designs that are quasi- experimental, randomized controlled trials, that really test the effectiveness of various intervention models.

This is an ideal role for nursing not only in terms of development of practice models but certainly in terms of conducting research studies that contribute to the body of literature and contribute to the science that is developing in this very early stage of practice. This is an ideal area of practice for research endeavors for nurses to undertake. There have been few studies conducted by nurses in this area and nurses can serve in very important practice roles and also in program development affecting models of care that will assist adolescents and emerging adults to transfer and transition to adulthood.