Navigating health service systems can seem daunting, to say the least. Making phone calls, getting doctor appointments and referrals, attending intake appointments, and preparing oneself for treatment can be both mentally and physically draining. When children and adolescents develop eating disorders, their parents become the main navigators in this scenario, making decisions and arrangements for their under-18-year-olds. But what happens when these adolescents reach the age of 18, and still require and/or desire treatment?
A recent Canadian qualitative study by Gina Dimitropoulos and colleagues (2013) explored the transition between pediatric and adult treatment for eating disorders to identify ways to facilitate smooth and effective transitions. To explore the tensions surrounding transitions, the authors conducted focus groups with service providers from both pediatric and adult treatment programs, as well as interviews with community practitioners.
This study used grounded theory (more in-depth discussion here), a qualitative approach that aims to develop a theory to explain a particular phenomenon based on an analysis of rich descriptions (Strauss & Corbin, 1998). As Strauss & Corbin articulate, this methodology aims to represent participants’ voices as accurately as possible; explanations and conclusions are linked to (“grounded in”) the descriptions voiced by participants, who are assumed to possess knowledge that will guide researchers to develop useful, practical theories. In this particular study, the authors ensured that their analyses reflected the views of their participants in several ways, including coding data (from focus group and interview transcripts) as a group and checking their findings against the literature, with participants, and with practitioners who did not participate in the study.
TRANSITIONING BETWEEN ADOLESCENT AND ADULT TREATMENT
SUMMARY OF MAIN FINDINGS
Dimitropoulos et al.’s study revealed TWO overarching themes relating to the transition from pediatric to adult eating disorder services:
- Participants perceived that the timing of the transition should be related to developmental readiness, rather than age.
- These service providers articulated a need for improved interventions for families and patients alike leading up to and during the period of transition.
This second theme encompassed several sub-themes in the form of recommendations for improving service transitions:
- Interventions should be put in place that better prepare families for the impending change in service provision and style
- Interventions should aim to help the young adult to develop “self-management” skills
- Coordinated follow-up with post-pediatric treatment health care should be arranged
Essentially, the authors revealed that practitioners, particularly those in the pediatric treatment focus group, thought that (1) adolescents often transitioned to adult services before they were developmentally prepared, and that (2) families are generally ill equipped to handle the sudden move toward individually-oriented treatment systems. The lack of development readiness may also be compounded by disorder-related factors, including the potential that the adolescent was “robbed of the opportunity to become autonomous” when she or he has an eating disorder during a key developmental time.
READY FOR CHANGE?
The first theme, relating to readiness for change, has important implications for treatment systems. As it currently stands (at least in Canada) individuals are considered adults once they have reached the age of 18. So, patients are unable to receive pediatric treatment after reaching this age. However, adolescence is an ill-defined stage, with age cut-offs ranging from 18 up to 30, in some cases. As the authors discuss, it is difficult to establish an age cut-off that accurately reflects the transition between adolescence and adulthood for all individuals, across the board.
“Emerging adulthood” is the term often used to describe the “in between” stage between adolescence and adulthood, wherein individuals undergo several major life transitions (Arnett, 2002; 2007 – both links lead to PDFs of the studies). Importantly, emerging adulthood is a time at which individuals establish themselves as autonomous beings. The establishment of autonomy can be interrupted by serious mental and physical illnesses, including eating disorders (Arnett, 2007). Thus, these individuals may be ill equipped to handle the navigation of treatment systems and the management of their eating disorder, as well as other facets of their lives including grocery shopping, living alone, and developing and maintaining relationships, once their parents can no longer take the reins.
Notably, only service providers in the pediatric care focus group articulated this concern; those in the adult services group did not. The authors attributed this difference to the pediatric service providers dealing more with patient and families’ anxieties and tensions related to the transition to adult services.
I would be curious to learn more about this difference; I wonder if there are inherent differences in the ways in which service providers for adolescents and adults perceive and relate to their patients that might be driving this different perception of “readiness for adult treatment”? Could this finding also be due to different opinions about readiness for change articulated by eating disorder patients and their parents?
INTERVENTIONS TO EASE THE TRANSITION
The second theme discussed interventions that could facilitate the transition from adolescent to adult services for eating disorder patients and their families.
The first suggestion centered around families, and how parents could be assisted in gradually stepping-back their involvement in their child’s treatment. Interestingly, the article seemed to implicitly assume that families had been engaged in family-based treatment, which is certainly not always the case. Nevertheless, the authors explored the tension between parents’ need for information and involvement and the emerging adult’s rights to autonomy in making treatment decisions.
The second intervention strategy involved the establishment of groups designed to help young adults “develop skills for managing illness on their own.” This is where I question the authors’ findings (or perhaps the ideas expressed by service providers): does expecting individuals with eating disorders to “self-manage,” or “manage their illness” impose a certain amount of responsibility for the illness on those individuals? I think what the authors and study participants are referring to here is the need for individuals to make choices about whether or not to engage in treatment.
This raises an interesting and important point about one of the key differences between youth and adult treatment systems: generally, in youth services, parents decide if and when their children require treatment; in adult services the individual plays a more active role in choosing and pursuing treatment options. While treatment can be deemed medically necessary, it is ultimately up to the individual whether they will attend. Choices can be made “against medical advice.”
There are a number of reasons for which an emerging adult may choose differently than their parents when considering treatment. This difference could cause not only significant setbacks in treatment and recovery, as the authors describe, but also cause serious ruptures in family relationships, aspects which are largely unexplored in this study. Hopefully, future studies will delve deeper into parent and patient experiences of treatment transitions. For now, the authors do describe the anxiety that parents may feel around no longer being able to find treatment that fits their child’s needs once their adolescent becomes an “adult.”
The last intervention implication the authors discuss relates to follow-up care for adolescents transitioning to adult services. The main focus here is on finding primary care physicians who are knowledgeable about eating disorders and who are willing to take on patients with eating disorder, who may be perceived as difficult to treat and as resistant to medical care. Participants suggested that doctors should receive more training in mental health care, a suggestion that has echoes throughout the literature detailing issues with primary care and eating disorder patients. I am personally a huge proponent of primary care physicians receiving more mental health training in general and eating disorder training in particular, having encountered a fair amount of misunderstanding in the primary health care system both personally and professionally, so I was pleased to see this represented in the article.
IMPLICATIONS FOR TREATING EMERGING ADULTS
While most of the suggestions put forth in this article make intuitive sense, what do they really say about the state of treatment for both youth and adults with eating disorders? As the authors indicated, we have learned that establishing an age cut-off based on developmental characteristics is preferable to choosing an age and switching service-provision gears at that age. However, given the high demand for services for both youth and adult services, this might not be feasible.
How, then, can we balance providing effective services for both groups?
Unfortunately, the answer is unclear. Just as it is difficult to demonstrate the effectiveness of one form of eating disorder treatment over another due to the complexity of eating disorders and treatment systems alike, the answer to “how to smooth the transition between services” is less than clear-cut. However, studies such as these reveal interesting findings that might lead to a re-thinking of the ways in which emerging adults are treated.
This kind of study is particularly interesting for the eating disorder field, as I think that there are some unique tensions at play with respect to resistance and barriers to eating disorder treatment (for example, sufferers both wanting and not wanting treatment, high dropout and remittance rates, long wait lists, and the combination of physical and psychiatric symptoms and outcomes that lead to treatment often being deemed “medically necessary”).
I certainly think that future studies should ask the patients and parents their perspectives on the continuum of care between adolescent and adult services (and if anyone knows of a good study out there looking at these elements, let me know!).
Dimitropoulos, G., Tran, A., Agarwal, P., Sheffield, B., & Woodside, B. (2013). Challenges in Making the Transition Between Pediatric and Adult Eating Disorder Programs: A Qualitative Study From the Perspective of Service Providers .Eating Disorders, 21 (1), 1-15 DOI: 10.1080/10640266.2013.741964