Getting Used to a New T1D Diagnosis: It's a Process
Michael Watts, MSW, RSW
Medical Social Worker: (formerly at) Diabetes and Endocrine Clinics, Alberta Children’s Hospital
Assistant Professor: Mount Royal University
Twice a year I facilitated a parenting workshop which explored issues related to parenting children or adolescents who live with Type 1 diabetes. Workshop topics included the following: the importance of communication, managing power struggles, establishing and maintaining appropriate boundaries, and theory related to the concept of emotional intelligence. Amongst all the topics covered, one of the most important powerpoint slides of the workshop is on The Stages of Change.
Stages of Change
When your child was diagnosed with Type 1 Diabetes, life changed. In order to adapt, you, your child, and your family as a unit entered a process of change. This process follows a predictable series of steps, each with its own challenges. The Stages of Change is a five-step model which views change as progressive and developmental, with success at any phase dependent on the success of previous stages (Prochaska & Norcross, 2001). In other words, your child will move on to the next stage once she “gets” the lessons of the stage she is currently in. In navigating through the model, individuals may progress through stages and then drop back (slip or relapse) to an earlier stage before starting again (Prochaska & Norcross, 2001). Your child likely will not master steps 1 to 5 in order, and that’s okay.
The stages in the model include:
I will briefly explain each stage and include an example.
1. Pre-contemplation Stage
Children or adolescents in this stage do not believe, or even recognize, that a problem exists. Due to his lack of awareness of the problem, the patient often creates problems for himself and for others involved in his life.
For example, let’s say patient “Devay”, who is 14 and is in grade 9, routinely neglects to test his blood sugars at lunchtime. When the lunch bell rings, he is more interested in socializing with his peers than in going to his locker to get his test kit. Devay does not believe the latter is a problem because he takes his insulin, eats properly and generally follows his self-care plan on a daily basis (with the exception of testing at lunch). His parents, however, feel it is a problem that Devay’s blood sugars are consistently high at suppertime (likely due to him eating lunch without testing at lunch). His parents consistently hold him accountable (or, in his view, ‘nag’ him) for not testing at lunch. The latter scenario plays itself out night after night after night.
From my experiences, the parent-child conflict begins to surface during the child’s pre-contemplation stage, as the parent is at a different stage than the child.
My colleague, Dr. Laura Kaminsky, and I facilitate a group for adolescents who struggle with their diabetes care. Many of the group participants identify incorporating parent-child conflict about type 1 diabetes diabetes self-care into their adolescent lives as a challenge. Further, many, if not 100%, have identified testing at lunch as a hindrance to their time to socialize with peers.
Many of our group participants have learned to justify omitting lunchtime testing namely due to the fact there are no immediate acute consequences in omitting the test. As the adolescent omits lunchtime tests day after day after day, she begins to develop a pattern of omitting lunchtime tests, which she does not perceive as a problem (pre-contemplation stage).
Although the adolescent was “action stage” minded (the action stage to be discussed soon) during the initial stages of diagnosis, the adolescent has regressed to the pre-contemplation stage as it relates to lunchtime testing. The parent is, and in most cases will always be, in the action stage as it relates to their child or adolescent’s diabetes self-care. As you can see, the parent and the child have conflicting beliefs of the importance of lunchtime testing and the latter puts the family at risk for mild to severe parent-adolescent conflict.
2. Contemplation Stage
This is also known as the “Yes but” stage (Miller, Duncan & Hubble, 1997). Patients in this stage slowly begin to realize that a problem exists, however they feel as though they do not have the time, energy or resources to fix the problem. As a result, they may be stuck for an indefinite period of time, thinking about, but not acting on, the possibility of making a change.
For example, for several weeks Devay has ruminated over the possibility of making changes. However he can’t seem to build up enough motivation to modify his current self-care patterns. Furthermore, given Devay ‘feels fine’ health-wise, he perpetually feels there is little incentive for him to adjust his self-care practices.
3. Preparation Stage
Patients in this stage are at the point in their life where they believe it is time to make a change, and therefore may experiment with change.
For example, let’s say Devay is fed up with having high blood sugars at suppertime, therefore he challenges himself to test his blood sugars, at lunchtime, on Mondays and on Wednesdays. Devay may even be open to receiving support from his parents, or from someone on his diabetes health team, in creating strategies or goals that aim to assist him with sustaining his experimentation with change.
4. Action Stage
Patients in the action stage present with both firm commitment and a plan for the future (Miller, Duncan & Hubble, 1997).
For example, after several weeks in the preparation stage, Devay is committed, daily, to testing at lunch. He begins to realize that he has a bit more energy, his blood sugar numbers are a bit lower and his parents are not nagging him as much at suppertime. In the action stage, not only has Devay created a plan to test at lunch, he is applying it.
5. Maintenance Stage
Patients in the maintenance stage have the ability to identify and to address inevitable and predictable obstacles which may interfere with their ability to stay committed to their change.
For example: Devay has worked with his diabetes care team, and met with his social worker to explore obstacles (via Life’s Game of Football – see my next article on strategies for setting goals) which he believes get in the way of him being successful at his goal of testing at lunch. As a result, Devay now realizes that the main risk factor associated with him not testing at lunch was his lack of accessibility to his testing kit. Now that he is in the maintenance stage, Devay keeps his testing kit with him versus leaving it in his locker.
How Parents Can Help Their Child Navigate Each Stage
Now that you have a general understanding of the Stages of Change, I encourage you to reflect on your child or adolescent’s self-care.
- Do you believe your child to be in one of the above stages?
- What have you done to offer support?
- What are the strengths associated with the types of support you offer?
- What are the limitations?
Continue reading this article to gain some practical strategies on how to show your child support through the diverse stages.
Parenting in the Pre-contemplation Stage
Parents can play a huge role in assisting their child with navigating through the stages of change. In the pre-contemplation stage it is important for parents to avoid “talking at” their child about the child’s struggles with their self-care. Parents can show support by “talking with” their child about the importance of proper self-care. Furthermore, via the use of ‘I’ statements, parents can share their feelings regarding their child’s struggles with her self-care. An example of an ‘I’ statement can include: “I worry about your high blood sugars, because I know that lots of highs can impact your health. As your dad, I want you to be as healthy as possible, so you have the energy and concentration you need to enjoy your adolescent years, and beyond.”
In addition to supporting through the use of ‘I’ statements, parents are encouraged to normalize and validate their child’s struggles during the pre-contemplation stage.
For example, Devay’s parents can use normalization in the pre-contemplation stage by stating, “It’s normal for you to want to socialize with your friends at lunch” or “As a teenager, it’s normal for time with your friends to compete with other priorities.” His parents can validate by stating, “I understand why you struggle to test at lunch because when the bell rings, it’s important for you to be with your group of friends.”
Offering to create strategies in the pre-contemplation stage may backfire because the child does not realize problem exists, may become defensive at the “action” parents are trying to force the child into, and the child or adolescent will most likely tune the parent out. Therefore, parents are encouraged to strategically utilize normalization and validation in order to maintain their child’s trust with hopes the child will consider the parent’s gentle prompting later on. In subsequent stages, parents can work with the child to create strategies that will empower her to test at lunch and join her friends.
On a side note, and somewhat unrelated to the essence of the “Stages of Change’ model, in the event the parent feels the child or adolescent becomes stuck in the pre-contemplation stage for an overextended period, and believes the child’s unwillingness or inability to make appropriate change begins to put his health at risk, and/or feels the parent-child relationship is deteriorating due to the child’s lack of progress, the parent is highly encouraged to devise and to apply a set non-negotiable self-care expectations for the child. If the expectations are not followed through on, parents are encouraged to apply the disciplinary strategy they are most comfortable with utilizing (of course, steering clear away from any type of abuse).
Parenting in the Contemplation Stage
Parents who believe their child is in the contemplation stage can offer support by continuing to normalize and validate the child’s struggles. In addition, when engaged in a conversation in which the parent is ‘talking with’ the child about the child’s struggles, parents can encourage their child to verbalize, or write down, the risks and benefits associated with making the necessary change. Doing so creates a frame of reference of the importance of change for a child who is ruminating about change.
For example, normalizing and validating Devay’s ideas and feelings about change helps him to understand that his parents understand his challenges and further sends him a message that his parents care and are willing to support him when he is ready to navigate change. Normalizing in the contemplation stage could include “It’s normal to feel frustrated and angry when thinking of the change you wish to make, however can’t seem to get started”, while validating in the contemplation stage could include saying “I understand why you became short with me when I suggested some change strategies for you; you’re going through a process and probably feel a bit sensitive. I’m here to support you if and when you need me.”
Parenting in the Preparation Stage
During the preparation stage, parents are encouraged to praise their child’s efforts at attempting to make changes. Also, parents are now encouraged to work with their child at devising strategies and/or goals which aim to assist the child in dealing with the obstacles that lead to the problem.
For example, in Devay’s case, the obstacle to testing at lunch is having his test kit easily accessible so that he is able to socialize with friends. Therefore parents are encouraged to praise even the smallest effort their child makes at making change. An example of praising a child during the preparation stage can include: “When I packed your lunch last night, I noticed your testing kit was in your backpack. I am proud of your efforts at keeping your supplies accessible and for trying to test at lunch.”
Remember, the amount of trust the parent gained via the use of normalizing and validating during the pre-contemplation stage may pay off during the preparation stage.
Parenting in the Action Stage
During the action stage, parents can show support by continuing to offer praise. I would also encourage you to continue to use normalization and validation, especially when your child experiences inevitable obstacles.
For example, Although Devay is committed to appropriate self-care, he may experience inadvertent slips. Therefore it’s important for his parents to continue to normalize and validate mistakes, or oversights, and provide support when needed, and most importantly, acknowledge his commitment towards his health.
An example of normalizing during the action stage can include: “It’s normal to forget from time to time. You didn’t forget on purpose.” An example of validating during the action stage can include: “Given how important your date was, in addition to how much of a hurry you were in, I can understand why you forgot to test. I’m sure this was not purposeful. Let me know if you need help the next time.”
During the action stage, it is important for parents to be mindful of the amount of ‘diabetes talk’ they engage in with their child. Too much diabetes talk (eg. reminders, or questions about blood sugars, etc) can be misconstrued by the child in the action stage as condescending, and therefore could trigger a brief period of rebellion.
For example, if the first thing you ask him when he walks through the door after school is “What was your blood sugar before lunch?” rather than “How was gym today?”, you may be allowing diabetes talk to dominate your relationship. I encourage parents to work with their child at identifying the best time during the day or week to have diabetes discussions (versus parents arbitrarily initiating discussions).
Parenting in the Maintenance Stage
Similar to the action stage, parents supporting their child in the maintenance stage can offer support by continuing to offer praise, normalizing and validating the occasional slip, or two (e.g forgets to test at lunch two to three days out of the week) and being there for the child emotionally, physically and practically.
Keep in mind the importance of relationship while supporting your child as she navigates each stage. ‘Talking with’, showing respect, and being genuine, loving, warm, caring and supportive can go a long way during the process of a child’s change.
In my next article, I will share strategies parents can utilize to assist their child with creating realistic and meaningful self-care goals via ‘Life’s Game of Football’.
Miller, S.D., Duncan, B. L., & Hubble, M. A. (1997). Escape from Babel: Toward a unifying language for psychotherapy practice.
Prochaska, J. O., & Norcross, J. (2001). Stages of change. Psychotherapy: Theory, Research, Practice, Training. 38(4), 443-448.
The above information was reviewed for content accuracy by clinical staff of the Alberta Children’s Hospital Diabetes Clinic.