Transitions for adolescents with chronic health conditions: Facing challenges and building skills

COMMENTARY

By Stephanie Davies


We all go through transitions — that is, dynamic and evolving events that occur over a person’s life course (1). In particular, transitions for adolescents represent a time where they are required to develop and call upon new, and potentially unknown, skill sets to help them adapt and succeed (1). Some common examples of adolescent transitions include graduating from high school, forming intimate relationships, and taking responsibility for paid or volunteer work. These new experiences can be overwhelming, leaving adolescents feeling worried, unsure, and as if they have a lack of control over their own lives (2). For many adolescents with chronic health conditions (CHC) such as diabetes, cerebral palsy, or serious mental illness, there can be an added layer of complexity and difficulty during transitions (3).

To date, researchers and institutions (i.e., hospitals and schools) have made great strides toward finding the best ways to support adolescents with CHC as they move through life transitions (9, 11). This article, meant to help adolescents with CHC reflect on these life transitions, will discuss one of the most common challenges they may face: losing all or part of their support network and forging a new one (6).

Where does the support go?

When an adolescent “graduates” out of certain services or communities, such as a paediatric healthcare setting or high school, many supports may be lost. For instance, a peer network forged through opportunities like a high school sports team may be more difficult to find upon graduation (7). An increasing number of children and adolescents with CHC reach adulthood, yet the supports provided within adult services are often inadequate compared to previous paediatric supports (2). This may leave adolescents and their families feeling worried about locating and accessing these new services (2, 8). To add to this dilemma, there is no clear answer about who adolescents and their families can turn to for supports since few adult transition providers are available (18). Uncertainty about future supports coupled with losing current supports may, in part, be alleviated through proactive transition planning with adolescents with CHC and their families.

Prior to transitioning from adolescent support networks, adolescents with CHC can work with their current network to create a vision of what they might want or need their new support network to look like. This process may help forge new, supportive relationships early in the transition process. Based on my clinical experience as an occupational therapist working with adolescents with CHC, some of the questions that adolescents might seek to answer are:

  1. Who are the most supportive people in my life?
  2. What do these supports offer or help me with?
  3. Where can I find similar supports?
  4. How can I start supporting myself in new ways?

These questions can initiate dialogue among the adolescent and current team members and inspire ideas for new forms of support. These types of discussions should centre on and be driven by the adolescent (2). In reflecting on these questions, adolescents with CHC may seek support from guidance counsellors, healthcare professionals, and/or their parents, or they might simply start thinking about them on their own.

When do transitions start?

Adolescents with CHC often do not have a choice about when they undergo life transitions, such as leaving high school or entering the adult healthcare system. However, questions remain about the most appropriate time for adolescents to start preparing for these transitions. Research has highlighted two factors that may impact timing: chronological age and level of maturity (10). Several studies had indicated that preparation for transition should begin between the ages of 10 and 14 years old to help children and adolescents as early as possible (11-13). The level of maturity and responsibility of the adolescent living with the CHC, however, should also be considered (12).

While no exact starting point for transition planning is outlined within the literature, delays in transition planning may contribute to poor outcomes, possibly deferring exposure to skill-building opportunities and the development of independence (20). Some of these independence skills include learning to self-manage their condition, understanding their health issues, and playing an active role in healthcare decision-making processes (3, 15).

Fortunately, resources are available to guide transition preparations for adolescents with CHC, which can help them to set and prioritize transition goals. For example, the Keeping It Together for Youth guide developed by the CanChild Centre for Childhood Disability Research at McMaster University, also known as The Youth KIT, provides adolescents with strategies for understanding how to access, organize, and communicate information during transitions (16).

The Youth KIT helps adolescents with CHC to create an individualized transition plan. A collaborative approach involving the adolescent, their parent(s), and their healthcare team may assist the adolescent to develop decision-making, self-management, and self-advocacy skills at their own pace (17-19). The Youth KIT has been described in the literature as “a tool that encourages young people to prepare for transitions by gradually taking control of their own information” (16). Understanding and managing information is one way to build self-management skills. The Youth KIT has also been found to foster self-discovery, allowing adolescents to develop a deeper understanding of themselves and their abilities (16). Increased self-understanding could support an adolescent’s capacity to advocate for their future wants and needs.

Who am I?

Take home message

Adolescents with CHC face great challenges when planning for and undergoing life transitions. The unpredictability of the future calls for developmentally appropriate planning and a healthcare team that supports adolescents throughout transitions. An adolescent’s capacity to connect their beliefs to their expectations about what they need and want can help them overcome their challenges and achieve success (17). Through collaborative efforts and use of transition resources, adolescents may begin to develop greater self-advocacy and self-management skills important for successful outcomes (2).

It is important to remember that every transition is unique and putting together a useful transition plan requires an individualized approach. When preparing for life transitions,  it is critical for adolescents with CHC to start a dialogue within their network. Encouragement and ongoing dialogue with support systems may inspire and motivate adolescents to reflect on their present and future life transition needs.


References

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