Diabetes Spectrum
Volume 13 Number , 2000, Page 50
Lifestyle and Behavior

Fostering Quality of Life in Individuals With Diabetes

Lorraine C. Schafer, PhD


The life of an individual who has diabetes could be likened to a beautiful tapestry, one that is unique and intricately woven with bright and dark colors. The weaving of the colors symbolizes the balance between successes (bright colors) and challenges (dark colors), easy times and difficult times, predictable health care results and medical crisis, diabetes management and maintaining true personal authenticity (genuineness). Each time the individual with diabetes successfully negotiates a challenge with her diabetes and life, the tapestry of her life becomes more secure. Patterns develop that help the individual with diabetes negotiate life and diabetes management. Confidence in herself and her abilities becomes ingrained. Quality of life becomes good.

In choosing a treatment regimen for an individual with diabetes, health care professionals must not unravel the patient's life from the patient's diabetes. If that occurs, the patient's authenticity will be lost, and the tapestry will become a pile of thread that no longer conveys meaning. All people have a need to have meaning and purpose in their lives. In fact, it is that meaning and purpose that often helps individuals make it through the challenges they face with diabetes. This is demonstrated repeatedly as we see women achieve excellent control of their diabetes while pregnant.

So, how can health care professionals facilitate the weaving of patterns in their patients' lives that will foster their personal growth, diabetes management, and, ultimately, quality of life? First, they can help individuals with diabetes achieve authenticity in their relationships with health care professionals. This means the professionals must accept that their relationships with people who have diabetes are of critical importance and thus deserve attention. These long-term relationships can either foster growth and health in patients' lives, leading to true authentic involvement, or they can foster a sense of disconnection, isolation, and shame.

Judith Jordan and her colleagues1 describe the importance of mutual and authentic relationships in human development. They also describe a concept called "relational paradoxes."2 A relational paradox occurs when a person's desire for connection is met with chronic rejection or humiliation, and thus the yearning for connection becomes even more intensified. A relational paradox can easily occur when an individual with diabetes wants to connect with her health care professional but finds herself in a position of reporting negative health outcomes or less-than-perfect diabetes management. She fears rejection from the health care professional, and in some cases the health care professional inadvertently shows rejection towards her (i.e., spends less time with her, spends more time expressing disappointment with her, makes more frequent or less frequent appointments with her, or shows other verbal or nonverbal negative communication).

The next time the individual with diabetes returns for an appointment, she desires connection but fears rejection from the health care professional. Often, the health care professional she is involved with is the only one available to her. Thus, the relationship is even more idealized. Because she believes that pleasing the health care professional will improve their relationship, she may alter her presentation of diabetes management to fit with what she believes are the expectations of the health care professional. She may not tell the health care professional what is really causing problems with her diabetes management, may not bring testing results to her appointment, or may even record inaccurate testing results.

More importantly, the individual with diabetes starts to represent herself less and less authentically in the relationship with her health care professional. She becomes caught up in a cycle of trying to be who the health care professional wants her to be rather than who she really is. This, of course, hinders the health care professional from "empowering"3 her to tailor the diabetes self-management regimen to her individual needs. Gradually the relationship becomes more punishing, as the individual with diabetes flounders with her diabetes self-management program.

Individuals in this situation can become so isolated and fearful of contact with health care professionals that they drop out of treatment altogether. They are often seen later in the health care system, after they have developed severe problems, such as eating disorders,4 major depression,5 or major diabetes complications. When seen in the medical system again, they may be treated with negative interactions because they are labeled "nonadherent." By encouraging authenticity, health care professionals are able to avoid this pitfall in diabetes management.

In my role as a medical psychologist on the pediatric diabetes team, I find myself trying to help individuals with diabetes and their family members maintain true authenticity in their relationships with me and the rest of the diabetes team. When I first meet children or adolescents who have been diagnosed with diabetes, my immediate task is to convince the patients and their parents that children with diabetes can have a "good life" (I never promise a perfect or easy life). Logic is helpful but rarely accomplishes the task. The patients and their families look at me with anxious, sad, and confused faces. Anger is just below the surface. I recognize the need to be authentic with the patients and their families. I must create an atmosphere of acceptance.

I do this by helping them to normalize their feelings and allowing them to "tell their story" in a supportive setting. Even with very young children (ages 3­5 years), I have found that listening to them helps them to work through their resistance to the diagnosis and treatment regimen. They often describe their anger. We draw anger thermometers and rate how angry we are that they have to take "shots." They are often surprised and pleased when I tell them how angry I am that they have to take shots.

At that point, I know I have become a part of their life experience with diabetes. Someone outside of themselves has understood their feelings. A bright color has been woven with the dark color. They learn to accept not only diabetes but also their insulin injections. This improves the quality of life for the entire family.

Second, health care professionals can help patients and their families externalize the problem (i.e., diabetes). This helps individuals with diabetes direct their frustration toward the illness instead of toward loved ones or health care professionals. Thus, a child may draw angry faces at diabetes rather than hitting her mother when the mother administers insulin. Children learn that their parents are on their side and are able to help them with diabetes. Health care professionals and patients can discuss the negative aspects of diabetes and not blame one another when metabolic control is not ideal. Instead, they can work together to create a more effective treatment plan.

Third, health care professionals can learn lessons from the family therapy literature. Cohesion, flexibility, and adaptability in family systems help to improve treatment adherence and metabolic control.6 Authenticity is likely to improve for individuals with diabetes when their health care professionals acquire these qualities for themselves. Cohesion (i.e., sticking with a patient), flexibility (i.e., being willing to replace one's agenda with a patient's agenda), and adaptability (i.e., possessing the skill to change easily), all become characteristics that result in more trusting and mutual relationships with patients.

Finally, health care professionals can assess if they are fostering authentic relationships with their patients by recognizing whether characteristics of an authentic relationship are present. Jean Baker Miller2 discusses "five good things" that describe an authentic relationship. I have adapted them to the health care professional/patient relationship.

  1. Does each person feel a greater sense of vitality/energy? (i.e., Do you as a health care professional and the patient feel energized during appointments, or are you/she stifled, rigid, or dreading the appointment?)
  2. Does each person feel more able to act and actually become active? (i.e., Do you effectively problem solve with the patient, come up with creative solutions, and discuss the specifics with her? Does the patient make lifestyle or regimen changes that help improve metabolic control?)
  3. Does each person have a more accurate picture of the other and him- or herself? (i.e., Do you know more about the patient with each successive appointment? Do you have a better idea of what the patient needs from you? Does the patient have a more accurate picture of her strengths and weaknesses and how diabetes affects her and vice versa?)
  4. Does each person feel a greater sense of worth? (i.e., Do you feel you have been effective as a health care professional? Does the patient feel she is better able to care for herself? Does the patient feel that you have truly heard her concerns?)
  5. Does each person feel more connection to the other person and a greater motivation for connections with other people beyond those in the specific relationship? (i.e., Do you feel a desire to help other patients with similar problems? Does the patient have a desire to share what she has learned with her family, friends, and teachers?)

I could not complete this article without asking members from our multi-family diabetes group to give input about what they feel helps in management of diabetes and quality of life for them. Thus, I asked 10 adolescents with diabetes and 15 of their family members to answer two questions: "What is the one thing that helps the most in caring for diabetes?" and "What makes you happy in life?"

The adolescents ranged in age from 11 to 16 years, with a mean age of 13 years. There were three adolescent males and seven adolescent females in the group. Family members who answered the questions included nine mothers, two fathers, two grandmothers, and two sisters.

Overall, the individuals with diabetes and their family members in our multi-family group supported the idea that interpersonal relationships play an important role in the management of type 1 diabetes. They recognized the importance of the technology that has been developed for managing type 1 diabetes, but highlighted the importance of the human relationships that they have within their family systems and within the medical system in managing their diabetes.

Thus, diabetes is not separate from life, and life is not separate from diabetes management. The quality of life of an individual with diabetes can be good, with many successes and challenges. However, that quality of life is fragile and must be developed within the context of supportive personal and professional relationships.


References
1Jordan JV: Empathy, mutuality, and therapeutic change: clinical implications for a relational model. In Women's Growth in Connection. Jordan J, Kaplan A, Miller J, Stiver I, Surrey J, Eds. New York, Guilford Press, 1991, p. 283-89.

2Jordan JV: A Relational Model of Women's Development: Theory and Clinical Applications. Thirteenth Annual Door County Summer Institute, August 2-6, 1999.

3Anderson RM, Funnell MM, Arnold MS: Using the empowerment approach to help patients change behavior. In Practical Psychology for Diabetes Clinicians. Anderson BJ, Rubin RR, Eds. Alexandria, Va., American Diabetes Association, 1996, p. 163-72.

4Rapaport WS, LaGreca A, Levine P: Preventing eating disorders in young woman with type I diabetes. In Practical Psychology for Diabetes Clinicians. Anderson BJ, Rubin RR, Eds. Alexandria, Va., American Diabetes Association, 1996, p. 133-41.

5Lustman PJ, Griffith LS, Clouse RE: Recognizing and managing depression in patients with diabetes. In Practical Psychology for Diabetes Clinicians. Anderson BJ, Rubin RR, Eds. Alexandria, Va., American Diabetes Association, 1996, p. 143-52.

6Anderson BJ: Involving family members in diabetes treatment. In Practical Psychology for Diabetes Clinicians. Anderson BJ, Rubin RR, Eds. Alexandria, Va., American Diabetes Association, 1996, p. 43-50.


Lorraine C. Schafer, PhD, is a medical psychologist at the Marshfield Clinic in Marshfield, Wisc.


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