In the Initial Stages of Diagnosis and Beyond
Michael Watts, MSW, RSW
Medical Social Worker: (formerly, Diabetes and Endocrine Clinics, Alberta Children’s Hospital)
Assistant Professor: Mount Royal University
Please note: The term child will be used throughout this article to reference children and adolescents of all ages.
It is well documented in diabetes literature that the initial adjustment period of caring for a child with type 1 diabetes is challenging (Kovacs, Goldston, Obrosky, et al. 1997). The challenges for parents include navigating the day-to-day practical, mental and emotional issues related to caring for a child with diabetes.
My experiences in the Diabetes Clinic at the Alberta Children’s Hospital include working with parents who, in addition to their own adjustment process, periodically find themselves ‘owning’ the unpleasant emotions their child presents with when the child is experiencing moments in which he is struggling with living with diabetes.
For example, a parent may be having a wonderful day however as soon as the child (who has had a diabetes-related frustrating day at school) returns home he presents as frustrated, anxious, agitated, confused and closed-ended. The parent makes several attempts to try and figure out what the child’s issues are, however each attempt is futile.
The parent’s earlier experience of having a wonderful day is now interrupted with a personal level of frustration, anxiety, agitation and confusion. The process plays itself out over and over, until similar types of episodes become a regular part of the family’s week. As time goes on the pattern is not addressed, and family members become susceptible to creating unpleasant communication and emotional climates within the home, as they relate to diabetes management and care.
The aforementioned scenario is a process the communication literature refers to as Emotional Contagion. Emotional contagion is the process by which emotions, either positive or negative, are transferred from one person to another (Alder, Proctor III, Towne & Rolls, 2008).
I work with parents of the newly-diagnosed who often experience (negative) emotional contagion influenced by their child or adolescent. The dynamic creates an ongoing atmosphere in which general diabetes-related expectations (e.g. communication about, actual management) are both perceived and experienced as unpleasant events for everyone involved.
In my experience, when diabetes tasks become perpetually unpleasant for all involved, families are at risk of not consistently applying best self-care practices which have previously assisted them with managing the condition on a day to day basis. Furthermore, relationships are jeopardized, parents’ patience runs low and parents are at risk of losing a sense of purpose as a parent caring for a child with a chronic illness.
To assist parents who feel the relationship with their child is periodically overshadowed by conflict related to diabetes management, who feel as though their patience is running low, or who often feel a loss of purpose as a parent caring for a child with diabetes, I have come up with seven steps which I believe help to preserve relationships, patience and purpose during the initial stages of diagnosis and beyond.
Seven Steps to Navigating the Initial Stages of Diabetes and Beyond
Step 1: Respect
Every child must be respected! In my experiences, a child will typically respect his parents to the degree the parent(s) respect the child.
Respect includes acknowledging your child’s initial experiences of living with a chronic illness, validating the diverse range of emotions he may be experiencing, and listening to and talking with him about the challenges and successes associated with his journey during the initial stages of adjustment. Relationships built on respect create motivation to preserve the sense of well-being that family members want for one another.
Acknowledgement: “We know it’s tough managing this condition on a day to day basis, and we understand when you say ‘none of us know what it’s like’, because we don’t have diabetes. The diabetes team said the initial adjustment period can be quite challenging. Dad and I believe you’re doing your best.”
Validating: “I understand why you reacted the way you did when I asked you if you tested your sugars earlier today. Although I am a bit disappointed at how the message was communicated, I am not mad at you. You are probably frustrated with the consistent questions and reminders you receive from me. Let’s make a plan around when and where we discuss diabetes tasks, and I’ll make an effort not to talk about diabetes outside of those assigned times, unless your safety is jeopardized of course.”
Listening to and talking with: ‘Listening to’ can include paraphrasing: “So what I hear you saying is you’re getting more consistent with testing at lunch. Good job son!’ Listening to can also include attending, which may involve providing a tissue when your child is crying, recognizing when his body language suggest he needs a hug, or providing 100% of your attention and focus to your child while communicating with him. Talking with your child may involve: sharing air time with him while discussing issues related to diabetes management; replacing accusatory statements with ‘I’ statements (feel the contrast between ‘You never check your blood sugar!’ and ‘I’m worried about how often blood sugar checks are missed’) and creating opportunities for your child to explain his side of the story, as well as to share his beliefs, thoughts and perceptions about diabetes matters as they arise.
I believe that once your child/teen understands that you respect him enough to acknowledge and validate his feelings, and realizes you are willing to listen to and talk with him, the relationship will get stronger, and your family will be better equipped to navigate the diabetes-specific unpleasantness that can threaten the relationship.
Step 2: Structure
Structure is generally defined as the way things are arranged, or put together. In the context of family, structure includes the type of environment arranged or put together by the parents and members of the family.
When working with families, I routinely assess the structure, or family environment. Is the environment warm, supportive and caring? Warm, supportive and caring are all protective factors for consistent and proper diabetes management. Is the environment cold, harsh, accusatory and divided? The diabetes literature speaks of the myriad risks associated with cold, harsh, accusatory and divided environments (Schafer, McCaul & Glasgow, 1986), and the risks include complications related to poor glycemic control, mental and emotional health issues and unhealthy family relationships.
I understand and am sensitive to the multiple reasons why some families have cold, harsh, accusatory and divided environments. My daily work includes validating, normalizing and empowering families (subject to these environments) to improve their environments with the hopes of maximizing the family’s sense of togetherness. I encourage such families to think of ways to use the diagnosis as an opportunity to evaluate and improve the family environment. Steps towards improving the environment can be as simple as everyone identifying one realistic thing he or she can commit to in order to improve the environment. Having weekly family meetings to evaluate family member’s progress towards improving the environment provides family ownership over the positive direction the family is aiming for.
It is important for the leaders of the family (usually the parents or other care givers) to create a structure which provides opportunities for the child or adolescent to feel safe and supported as he navigates the initial stages of adjustment and beyond. A great way to build a healthy structure within the home is to meet as a family and identify what you do well collectively as a group, and what you could work on collectively as a group to improve the environment. For parents who feel they have lost a sense of purpose as a parent caring for a child with diabetes, I remind them that part of their purpose (as parents) is to continue to strive towards creating the most optimal familial structure so that their child can thrive mentally, emotionally and physically.
Step 3: Expectations
During a recent trip to the United States, an Immigration Officer asked me what it was I did for a living, and I replied that I’m a therapist and a professor. The officer then asked me “what do you profess?” and I said, “I profess the expectation that every child be raised in warm, supportive, loving and caring environment.” The Immigration officer didn’t have a response except to say “You’re free to go.” As I walked away I thought to myself, “This guy must think I’m crazy to make such a bold statement.” The reality is not every child is raised in a warm, supportive, loving environment, however I figure if I consistently express that conviction when applicable, my expectation may someday be a reality for all children.
I hold the belief that in order for a child to be raised in a warm, supportive, loving and caring environment, it is important for parents to have expectations of themselves. In the context of caring for a child with a chronic illness, here are a few expectations one may consider:
- I expect to be the best parent I can possibly be, and to minimize the number of times I make re-occurring parental mistakes.
- I can’t expect to be perfect with my child/adolescent’s diabetes management.
- I expect to receive support, cooperation and teamwork from my family members.
- I expect to engage in self care activities (at least 30 minutes each day) which allow me to focus on myself. This will, in turn, make me mentally and emotionally strong.
- I expect my child/adolescent will have challenging days with his diabetes management and I expect to normalize and validate his feelings.
- I expect to work with my family at managing diabetes and not allow the disease to manage my family.
Having expectations does not mean the expectation will always be achieved. However, having an expectation creates a culture of getting things done, and holding oneself accountable if the expectation is not met. If you expect to create a warm, supportive, loving and caring environment (all of which are protective factors for solid diabetes management), it’s important that you strive toward that expectation each day and have the awareness to explore obstacles which may interfere with your daily expectation.
I hold the belief that having an expectation helps to develop patience. For example, fulfilling an expectation can sometimes be a timely process. It is during that waiting period that people develop patience, and the patience-developing process is expedited if the expectation is routinely followed through on. I encourage parents to expect meaningful and realistic things of their children. As time passes and children learn to follow through with their parent’s expectations more routinely, parents are more likely to learn how to develop more patience for their children.
Step 4: Boundaries
Many of the families I work with struggle with boundaries – especially families with teenagers. In my experiences, the primary reason for this struggle is simply a lack of discussion about, creation of and agreement upon boundaries. Boundary violations happen frequently in the families I serve, namely because they were never established.
Boundary violations include some of the following examples:
- Before saying ‘good morning’, asking if the adolescent tested his blood sugar.
- Texting, e-mailing, or phoning the child’s cell phone multiple times throughout the day to talk about diabetes.
A lack of boundaries can create a situation in which the adolescent perceives the parent as a perpetual ‘diabetes cop’, constantly nagging (or as we call it in diabetes clinic: ‘Loving’) and showing little to no interest in the adolescent’s life outside diabetes.
I’m of the view that parents are always in the ‘action’ stage of their child’s management. For example, many parents think about their child’s diabetes day after day; they think about safety, potential complications, what the next A1c level will be, etc, etc. This thinking leads to a desire to take action to make things better. Being in the action stage often gets in the way of parents creating and adhering to age-appropriate, meaningful boundaries. Boundaries are so important on multiple levels, and adhering to them helps to strengthen relationships, trust, responsibility and accountability.
Here are a few points to consider when establishing boundaries:
- Do we have an agreed upon time of the week to explore diabetes issues? I encourage families to meet for 15-20 minutes on Thursdays to get the adolescent prepared for the weekend, and on Sundays, to get prepared for the week. Furthermore, I encourage families to explore what the adolescent and parent(s) are doing well, and what they can all improve upon in the context of management.
- Under what circumstances can we discuss diabetes outside of the established times? (e.g. ketones, flu, parents notice adolescent is skipping injections or finger pokes or engaging in any other behaviours which jeopardize the adolescents short and long-term health)
- Does the adolescent understand that if she does not follow through with the expectations regarding boundaries, the parent will use parental ‘veto’ power to get the adolescent back on track? (See the next article on Discipline.)
- Does the entire family agree to be accountable to the agreed upon terms of the boundaries? Are there consequences of not being accountable? Does everyone understand these consequences?
- Is the parent aware that his parenting style will likely determine the success or the demise of establishing boundaries? For example, an over involved parenting style will likely create boundary violations if the parent is not aware and makes the necessary adjustments.
Step 5: Discipline
Discipline is synonymous with teaching. When a child displays a pattern of making unwise decisions, it is the job of the parent to control certain areas of the child’s life, via teaching/discipline, until the child can prove he has grown from the experience and is ready to resume the age-appropriate freedom he was once afforded by his parent.
Discipline (or teaching) can include many styles:
- An open ended discussion which includes: the parent verbalizing her disappointment, uncertainty, frustration or anger at the SITUATION and not at the CHILD; requesting clarification around what influenced the child to do what he did; and using teachable moments (e.g. role play, role reversal, etc) to thoroughly explore the issue.
- The taking away of privileges, or “prized possessions”, especially those that parents feel distract the child on a consistent basis (e.g. cell phone, iPod, iPad, video games, driver’s license, lap top, etc, etc.)
- Limiting the amount of extracurricular activities the child is involved in until he can prove he is responsible enough to resume those activities.
- Applying natural consequences. (e.g. If a child is not willing to test sugars prior to going to a movie with a friend, the child does not leave the home until he tests, even if it means missing the movie.)
Although not the most attractive part of parenting, and although the child will never verbalize that he appreciates it, discipline is an essential component of parental purpose; it is essential in the child’s growth in areas such as mental, emotional and managing responsibilities. Discipline is an investment in the child’s character, integrity, values and beliefs; children (often unconsciously) find comfort in knowing that their parents love them enough to correct them.
Step 6: Follow-Through & Step 7: Consistency
I often use the metaphor that a family is like a successful sports team. In the history of sport, the perennial championship teams have one thing in common: great leadership! Great leadership does not mean doing things right 100% of the time; however, it does mean utilizing and building upon strengths, while recognizing and making plans to enhance limitations.
In order for all the other ingredients of parental success – respect, structure, expectations, boundaries and discipline – to work, parents have to follow through with consistency. Following through with consistency takes time, motivation, energy and effort. For example, it takes a lot of parental fortitude to stick to a natural consequence (e.g. no movie because the child refused to test) or remembering to consistently apply consequences when a child makes either wise or unwise choices. Once follow-through and consistency are routinely adopted into the parental framework, family relationships are likely to be enhanced, parents are likely to develop more patience with their child, and the overall process of striving for great leadership can provide the parent with a new sense of parental purpose.
Adler, R.B., Proctor III, R.F., Towne, N., & Rolls, J.A. (2008). Looking out, looking in. 3rd Ed. Canada: Thomson/Nelson
Kovacs, M., Goldston, D., Obrosky, D.S., et al. (1997). Psychiatric disorders in youth with IDDM: Rates and risk factors. Diabetes Care, 20, 36-44
Schafer, L.C., McCaul, K.D., & Glasgow, R.E. (1986). Supportive and non-supportive family behaviors: Relationships to adherence and metabolic control in persons with type 1 diabetes. Diabetes Care, 9, 179-185
The above information was reviewed for content accuracy by clinical staff of the Alberta Children’s Hospital Diabetes Clinic.
This material has been developed from sources that we believe are accurate, however, as the field of medicine (in particular as it applies to diabetes) is rapidly evolving, the information should not be relied upon, as it is designed for informational purposes only. It should not be used in place of medical advice, instruction and/or treatment. If you have specific questions, please consult your doctor or appropriate health care professional.
Share this Article