THE EMOTIONAL AND PSYCHOLOGICAL EFFECTS
DEALING WITH DIABETES:
WHAT DO FAMILIES NEED/WANT?
By Sylvia Staten SylStat@aol.com
City University, November 2004
By Sylvia Staten SylStat@aol.com
Objective: The goal of this study is to look into the emotional and/or psychological needs of families whose child or children have been diagnosed with diabetes.
Methods Used: A survey of sixty-seven participants who are either diabetics themselves, or are parents/caregivers of young diabetics, was taken. I asked the respondents to choose what aspects of their training and support was good, adequate, or missing. These participants were asked to decide how well their (the family’s) emotional and psychological needs were met during the diagnosis phase and what could have been done to improve the process, if anything.
Results: Of the sixty-seven participants surveyed, forty-two were parents of a child, twenty-two were diabetics themselves, two were parents of a diabetic child as well as being a diabetic themselves, two were parents of a diabetic child as well as a spouse of a diabetic and one parent had two children who were both diabetic. Of the twenty-two diabetics who responded, fifteen of them were diagnosed as a child and seven were diagnosed as adults. Of all of those who were surveyed, 82% stated that, when diagnosed, they did not feel prepared to handle the diabetes at the time of discharge from the hospital. 18% of the people felt they were prepared to handle most of the care. 69% of those surveyed stated they were not given any additional support, i.e.: family support, special contacts, etc., at the time of diagnosis. 31% had been given something to use in the way of additional support after diagnosis. Of the 31% who were given additional information, 86% of them utilized the information for emotional support, while only 14% stated they did not use the information given to them.
Conclusion: The majority of those who are dealing with diabetes strongly feel the need for additional emotional and psychological support at the time of their diagnosis. In addition to the medical needs of the diabetic, clinicians need to have additional resources to give to their patients and the families that will better enable all of those involved to handle the emotional and psychological impact of dealing with the diagnosis of this disease.
Introduction: The number of people being diagnosed with diabetes is growing in our nation and in the world (Wild, et al, 2004). Here in the United States there is an estimated 18.2 million people, roughly 6.3 percent of our population that has diabetes. Of those there are approximately 206,000 people under the age of 20 that are diagnosed with diabetes. It is estimated that one in every 400-500 children or adolescents will be diagnosed with diabetes. The latest trends also show that this number may be on the rise, since Type 2 diabetes is on the rise amongst our youth (NIDDK/NIH, 2002).
New York City Health Department has recently announced that deaths related to diabetes in that city have risen 11% in 2003, making it the fourth leading cause of death in the city. That was a jump from 6th leading to cause to 4th in one year. NY Health Commissioner Dr. Frieden states, "This is of utmost concern because diabetes, which can be controlled, has more than doubled over the past 10 years, and it remains an under-diagnosed condition" (Newsday.com, 12/22/2004).
When a child is diagnosed with diabetes there is an entire family that will be affected by the diagnosis. In their book, The Diabetics Book, June Biermann and Barbara Toohey, respond to the question, "Will diabetes make changes in our family life?" by answering, "Only about as many changes as moving a hippopotamus into the living room. Each looms large on the scene, can’t be ignored, has to be worked around, demand a great deal of time and trouble and care; and you never stop wishing that someone would take the damned thing away" (1998, p.168).
In today’s society, many of the families are already dealing with many stressors in their lives. There are more single parent families who are already stretched thin by emotions and finances. Now add to this the stress of having a child diagnosed with the chronic condition of diabetes. This kind of stress is difficult at best. But add the normal daily stresses of today’s living environment and you will find a household that could be close to an emotional breaking point.
When most of these kids are diagnosed with diabetes they may end up in a hospital for a few days. Depending on the age of the child, it is imperative that at least one parent be available to learn everything necessary to take care of the new needs of the child. There is so much that the parents are required to learn. So much information is being thrown at them in such a short period of time. It can be very overwhelming. Add to this the emotional and psychological aspects of having their child diagnosed with a disease that will alter the child’s and the family’s life forever.
The main concern for the medical community is the physical well being of the child. The emotional and psychological aspect of this diagnosis is rarely addressed. There is usually a strong emotional reaction to having a family member diagnosed with any type of illness or disease. Because diabetes is a chronic illness that will be with the person the rest of his or her life, there are many stages of grief, guilt, and anger that the patient may experience as well as the immediate family members. Parents are especially prone to experiencing these types of emotions when their child is diagnosed.
This study is being done in order to help the medical community learn what is needed to give a better-rounded support to their patients as well as the family. The medical staff needs to realize that the patient is part of a whole. The entire family unit needs to be taken care of, not just part. The emotional and psychological needs of the unit (family) need to be addressed as well as the physical needs of the patient.
It is vitally important for the patient’s physical needs to be taken care of. At the same time, the medical community needs to ask the all-important question of what this news is doing to the patient’s psyche? How is the patient’s family going to be, coping with the daily grind of dealing with this disease? What kind of support system do the patient and family have to help them cope?
What does the patient and/or their families need in order to better face the challenge of living with the diagnosis of diabetes? I have set out to help explore the various needs of those who are dealing with this issue. I want to help educate the medical community to have a better understanding of what their patients and the families actually are looking for in order to survive the initial diagnosis phase of having diabetes.
Research Method: In this study I tried to target those who were diagnosed at a young age or those whose child was diagnosed. My focus here is the various needs of the family as well as the child themselves. I asked participant to fill out a survey (Appendix A) to find out what was or was not lacking in their over all care at the time of diagnosis.
The survey consisted of questions which included such things as how comfortable they felt upon discharge, what types of things were offered as support, if any, and what else they felt they would like to have received at the time of diagnosis. A series of twelve questions were then asked which used a rating scale of one to five, with one being Very Important and five being Not Necessary/Not Applicable.
The types of questions utilized were trying to see what types of support the respondents would most like to have received when they or their child was diagnosed with diabetes. I started out by asking "During the initial diagnosis and during the first few months I would like to have:" I gave 12 different options, each to be rated in importance. The ratings ranged from 5 to 0 with 5 being Most Important down to 0 being Not Important/Not Applicable.
At the end of the survey I asked those responding to give some details of thoughts and ideas they may have had during those first initial months following the diagnosis of diabetes, or their hindsight they have now looking back on their experiences. I was impressed with the consistency that seemed to follow these stories.
Results: Out of the sixty-seven that responded, there were forty-two parents of children with diabetes, there were fifteen diabetics who were diagnosed as a child and seven who were diagnosed as an adult. There were two parents of diabetic children who were diabetics themselves. There were two who responded that were parents of a diabetic child as well as a spouse of a diabetic. There was one person who responded who had more than one child who had been diagnosed with diabetes.
When I asked the questions, "Did you feel comfortable with everything upon discharge?" 18% (12) responded with YES. A full 82% (55) responded with a resounding NO.
Another question asked was if the person, at any time, was given names of organizations and/or other families whom they could turn to for additional help if necessary. 69% (46) stated NO. 31% (21) answered YES to this question.
72% of the respondents answered that they would have loved having a mentor, another parent who was experienced with the situation. 88% would like to have been given information about local support groups. 64% of the respondents said they would
like to have been visited by other parents, especially while they were still in the hospital. This was a common comment given by many of the respondents, including those who were the diabetics themselves. To not feel so alone and isolated was stated the most.
Many of the respondents also stated they would like to have known about camps for diabetics. This is usually a good way to let the child be involved in a fun activity with others who have diabetes. " Summer camps for children with diabetes can be an excellent way to educate children about diabetes and self-care, and provide a positive, upbeat environment in which children can socialize with others with diabetes" (Coping With Diabetes, 2000, p. 337).
Only 49% of those who responded said they would like to have had counseling for the child after his/her diagnosis. Yet, 64% stated they would like to have had counseling for the entire family to help with the emotional thoughts and feelings they were experiencing at the time of diagnosis.
Because there are many issues involving a child who attends school, even a pre-school setting, 64% of those responded said that they really needed to know how things would be handled at their child’s school. Each state differs in their rules and regulations regarding diabetes in the school, so it is important that families be given a resource where these types of answers can be found.
Discussion: Transition. We have all been there at one time or another at various points in our lives. We had our first major transition at the time of our birth. We then transitioned into starting school, meeting new friends, joining clubs, sports, work, whatever. For most people, all of these transitions go fairly smoothly. Things seem and feel natural because everyone around us are experiencing similar transitions in their lives.
There are two different kinds of transitions. There is the developmental type of transition that most of use experience as we grow and learn new things in our lives. This is what I was referring to previously when talking of the normal growth and changes most people experience.
But, for some people, things happen in their life that upsets the normal flow and requires a whole new transitional period. This type of transition is referred to as a reactive transition. The person is reacting to an external stimulus that has created the change in their life. When someone experiences a death of someone close to him or her, perhaps something as simple as a broken bone that requires a cast or splint, then all of these things require the person involved to learn how to take on life in a different way in order to accommodate the new aspect of their life: death of a person, cast on the arm or leg.
In his book, The Way of Transition, Embracing Life’s Most Difficult Moments, William Bridges talks about his own transitional state after the loss of his wife due to cancer. He stopped taking on conferences, guest-speaking assignments, anything to do with work. Mr. Bridges realized that his whole career of talking about transitions seemed totally unreal to him at this point in his life.
When he started to look at the topic of transitions, Bridges realized that, up until that point, he really knew very little about what transition really was. "I wondered, how could I ever have tried to pass myself off as an expert on transition? I felt now that my words had totally failed to match in depth the experience of actually being in transition." (p. xxi of prologue, 2001).
Bridges discovered that what he was feeling was the disenchantment that was always part of a transitional experience. A person has been living their lives knowing one kind of ‘truth’ or reality. All of a sudden something has entered into their lives or happened in their lives that becomes a totally new reality. That is what transition is all about, learning to accept and learn about this new reality that is now becoming a part of your life.
Transition not only creates disenchantment in your life but it will also change your entire identity as well. Suddenly you are no longer the same person you were prior to the transition. You have a whole new identity that you must clarify, identify, and learn about.
All of this can create a sense of disorientation. Think about how you felt the first day of school. You did not know the routine, who the teachers were, where your classroom was, or even something as simple as where the bathrooms were. As a new student you had to learn all of these things in order to become oriented to your new surroundings. The same is true for any new adventure or transition that enters your life.
To achieve continuity we must be willing to accept change. If you stop and think about it, your entire life is made up of changes that become a new reality, which in turn becomes a normal aspect of your life. Transition is the way we come to terms with change (Bridges, 2001, p. 3).
Bridges has this profound way of looking at transition. He states, "Since loss is best seen as the cue that it is time to let go of the inner thing, one of the first things a person in transition needs to ask is: ‘What is it time for me to let go of?’ " (2001, p. 15). It is important that a person looks at the outer change as only a cue that something from within must be changed. These changes happen all of the time in our lives. Transition is a signal that one chapter of your life has ended and it is time to begin a new chapter.
When we go through a transition we will ultimately experience a renewal. In order to achieve and experience a renewal of yourself, you must go through the transitional phase first. Renewal is like going from fall through winter in order to arrive at spring. "Renewal is possible only by going into and through transition, and transition always has at least as much to do with what we let go of as it has with whatever we end up gaining in its place" (Bridges, 2001, p.49).
Most people do not look at change as an opportunity. They really do not want to change. Change is hard. Change is disruptive. Change is risk-taking. Change is scary. We resist change with every fiber of our being. But diabetes has an equally loud voice shouting, "Change. That is what I am all about. Get yourself right with me, or you are in for Big Trouble" (Rubin et al, 1992, p.223).
Thinking of grief as a condition creates a stagnant energy. If you think of grief as a process, then you have a sense of movement, the beginning, the intermediate steps, and finally an ending. You must develop a sense of wanting a change to begin to actually create the beginning of that change.
Through our suffering is when we can actually start to learn the value and importance of life itself. If we did not suffer we would not fully understand what feeling good was really all about. This is the theme around ‘the wounded healer’, which can be found in almost all walks of life.
Peg Mayo refers to anger as a call for action. It is fueled by adrenaline in the "fight or flight" response (The Nature of Sorry, 2001, p.29). When change occurs in our lives, one of the responses we may have is of anger, a ‘Why Me’ type of response. A lot of people may feel the need to try and run away from whatever it is that is angering them. But for most situations, running away only changes the scenery in which you must deal with the anger. Sometimes our anger may be useful in order for a person to accomplish a change that is needed. Putting your energy from the anger into a constructive manner will help you achieve more than putting anger towards destructive matters.
Webster’s Dictionary describes alchemy as a power or process of transforming something common into something special. This is similar with the modern day phrase of, ‘when given lemons, try making lemonade’. Sorrow and anguish are the elements of grief. In alchemy of transmitting grief to creativity, sorrow is the base material to be transformed and anguish is the flame (Mayo, 2001, p.35).
When someone experiences sorrow, they may have a sense of loss, or being disconnected from everyone and everything. This person may withdraw from all normal activities and find anything normal feel out of sync. When a person has been handed something that creates change and sorrow, they need to find a way to move forward. Mayo states, "For many people, transformation as a dynamic self-directed process, is a difficult concept. Simply put, to direct the inevitable change in your perspective and experience requires three things. First must come the recognition that change is not only desirable, but also possible. This implies hope, if not belief. Second must come determination to marshal all possible resources-friends, therapy, experience, tools-to the task. Further you must adopt an attitude of humane expectation toward your efforts" (The Healing Sorrow Workbook, 2001, p65).
Back in 1679, Thomas Willis, the British physician who was the first person to recognize the presence of glucose in the urine of people with diabetes, wrote, ‘The cause of diabetes is an emotional state I will call extreme sorrow.’ (Rubin [Snoek & Skinner], 2000, p.235). Until recently many of the researchers believed that there was a psychological cause to diabetes. Now researchers and clinicians have focused more on the psychological impact having diabetes brings to the patient.
When someone is diagnosed with a chronic illness or disease, like diabetes, there can be such a sense of loss, a sense that life, as you once knew it, is no longer going to be the same. When a child is diagnosed with diabetes, the pain of that reality can be especially overwhelming for the parents. The need for reassurance from others is one way to help the family and patient start learning how to live with the disease. It also helps all those involved not feel so alone when it comes to dealing with the mechanics as well as the torrent of emotions that usually follow. These were echoed in most of the summaries that many respondents included at the end of the survey. The need to connect with others appears to be one of the greatest concerns for everyone.
As previously stated, most of those who responded had such a sense of aloneness at the time of the diagnosis. They had a feeling of being separated out from the rest of the world. This made many of them feel alone, confused, even more angry, but most of all afraid. The idea of not knowing anything about what is going on and what might happen was felt by almost all of those who responded. One respondent, a nurse, stated that even though he knew most of the mechanics of how to handle the disease, when it came time to deal with his own child being diagnosed he felt devastated, alone and afraid.
Richard Rubin asks the key question when he asks, "Why are coping problems so common?" His answer is "because there are no vacations from diabetes. Diabetes management is a 24-hours-a-day, 365-days-a-year proposition. Thus it affects every aspect of a person’s life, including job, social life, recreation and family life." (Rubin, [Snoek & Skinner], 2000, p.236). Rubin also recognizes the fact that diabetes is a family disease. It will have affects on members of the patient’s family and anyone else the patient has regular contact with.
When you are talking about a child who has been diagnosed with diabetes, the affects can have a large impact on the parents and siblings’ lives as well. When a young child is diagnosed with diabetes, it is, in fact, the parents or caregivers who, in essence, become the ‘real’ patient (Snoek & Skinner, 2000, p.3). Routines are changed to accommodate the child’s needs. Simple things like planning an evening out, going to the movies or out to dinner, will need special preparations and considerations. School activities now require special attention, as the child will need special accommodations for his or her diabetes. The younger the child the more needs she or he will require. These various elements can become very daunting for the parents, especially in the beginning, after the child’s diagnosis. Questions will be asked, such as ‘Who will take care of my child while s/he is at school?’ Who will watch my child while s/he is at soccer practice?’ What happens when my child goes on a field trip with his or her class?’ These are the common concerns for parents whose child has been diagnosed with diabetes.
Suddenly, everything in the child’s life can become a bigger concern for the parents and a real threat for the child. A common cold or the flu can have devastating effects on the child with diabetes. Something as simple as an infected cut or an ear ache will cause alarm to raise up in the parent because now they have to be concerned over how this, what use to be considered a fairly simple illness, can effect the child’s diabetes and blood sugars. Nothing is as simple as it used to be. This was noted in the book, Diabetes, Insulin, and the Transformation of Illness: Bitter Sweet when the author writes, "Diabetics also seemed threatened by commonplace events, as otherwise normal occurrences could quickly become cause for alarm. A slight illness might precipitate acidosis and coma; sore throat could lead to ‘blood poisoning’; a minor cut on the foot might develop into gangrene" Chris Feuntner, 2003, p. 68).
Also, for the child without diabetes, having growth spurts and dealing with hormones means nothing more than growing, acne, and the sense of growing up. For the child with diabetes and the parents, the mention of growth spurts and hormones can bring about moans and groans because the hormones can wreak havoc on the diabetic’s blood sugars, which will require an increase in their insulin, needs.
Another psychological impact of having a child with diabetes is the concerns of that child’s sleeping schedule. When a child is first born, the new parents may constantly keep vigil over that child at night to ensure that the sleeping child is still breathing. The new parents are concerned over the small baby getting smothered by the blanket or even rolling over and the mouth being blocked off by the mattress. Eventually, as the child gets a little older and is able to turn on its own, the parents will not be as anxious about the sleeping child.
With the child with diabetes there is always the concern over him or her having a low blood sugar that can cause the child to move from the sleeping state to the unconscious state. It is rare but not uncommon for a person with diabetes to actually die from a low blood sugar that occurs while they sleep. There are also high blood sugars that can cause a person to be sick or even cause the person to go into a diabetic coma. The parents of a child with diabetes may need to wake up during the night to monitor their child’s blood sugars (BGs) to help prevent anything bad from happening. Unlike the newborn child, the child with diabetes will never outgrow this problem. Even as they become adults and go off on their own, the parents will always have this common concern for their child with diabetes. ‘Will s/he wake up today? Will s/he be all right?’
As with most people who are given devastating news, there is often a response of anger and depression. This is known as the ‘grief response’ and is natural and common. Not only will the child have this type of reaction to being diagnosed with diabetes, but the family members, especially the parents, will often have this same reaction.
There are different stages of grief that a person might experience (The Diabetes Sourcebook, 1999, pp.145-150). There is denial where the reaction is that the diagnosis is not really true. The family will often think that the lab made a mistake or that there is no family history, so their child couldn’t possibly have this disease.
Anger is a common response to being diagnosed with or having your child diagnosed with diabetes. The common question of "Why me?" is often asked. The patient or family may start looking for someone or something to blame for the diagnosis.
Bargaining involves weighing the odds. It may also involve the patient or family trying to bargain with the medical team to change their minds over the diagnosis.
Depression is a common reaction to being diagnosed with or having a child diagnosed with diabetes. There is no simple solution to this depression. This may come and go throughout the life of the patient and/or their family in varying degrees of intensity. With kids, especially teens who have diabetes, this depression may actually cause them to stop monitoring their BGs or lie about their BG levels.
In the Diabetes Sourcebook it is mentioned that there are two types of depression: the pathological and the functional. Pathological depression occurs when a person is no longer able to make rational decisions, talks less or stops talking, and/or withdraws. Functional depression is considered less severe and is usually resolved with education and support (Guthrie & Guthrie, 1999, 147-148).
In the book, Practical Psychology for Diabetes Clinicians, they state how depression and anxiety disorders are common amongst those who are dealing with diabetes. These types of disorders can severely hamper the medical management of diabetes. Depression can be a major contributing factor to poor self-care and worsened glycemic control (Anderson & Rubin, 2002, pp.216-217).
In their book, Psychology in Diabetes Care, Snoek and Skinner state that depression is common, severe, and has especially adverse consequences among people with diabetes. "It is more common among people with diabetes than those in the general population. Some studies have suggested that upwards of 40% of the people with diabetes have significantly elevated levels of depressive symptomatology, although they are not all diagnosably clinically depressed. Studies have also shown that the depression is more prevalent in women than in men" (2002, p.249)
They go on to state that depression in diabetes is under diagnosed and under treated. The main reason that depression amongst those dealing with a chronic illness is not diagnosed or treated is apparently due to the fact that most clinicians feel the depression is secondary to the illness itself. Therefore it is not considered as important (2002, p. 250).
In a recent study done at Reuters Health in New York, they showed that there is a correlation between depression and insulin resistance. The study was mostly focused on middle-aged women and a correlation, if any, on central adiposity in the body. But their study showed a significant increase in the number of women who developed diabetes in relation to their depressive state (Reuters Health, 2004).
If a study were to be done similar to this involving those who already have diabetes, one could only imagine that a person who is dealing with depression would also be noticing an increase in insulin resistance, which would, in turn increase their BG averages and the need for more insulin. This would, also, in turn increase their depression because of what would appear to be an inability to control their blood sugars.
The final step of the grief response is acceptance. The patient and/or family have resolved a lot of their denial issues and are now ready to learn what needs to be done to get on with their lives. They may still have issues of depression and anger but they have now come to accept the fact that they or their child has diabetes.
Studies have been done using the Leventhal and Colleagues self-regulation model to try and understand and even predict individual coping with and subsequent self-care of chronic illness. This model, postulates that it is the individual’s illness representation or personal model of illness that is the proximal determinant of coping behavior (Skinner, et al, 2002, p.23). In their model it showed that beliefs about treatment effectiveness and the perceived seriousness of diabetes were predictive of self-care, with treatment effectiveness beliefs being a better predictor than barriers to adherence. Skinner and colleagues then go on to include the personality of the patient as a possible predictor of self-care. They focused on emotional stability and conscientiousness to see their relevance to health and health behavior (Personality, Personal Model Beliefs, and self-care in Adolescents and Young Adults with Type 1 Diabetes, 22, p.24)
Past studies have shown that emotional instability is associated with a greater severity of symptoms and more contact with medical professionals. In their study, Skinner and colleagues showed that the effects of personality on self-care were mediated by the person’s beliefs. They also showed that conscientiousness evidenced strong consistent associations with self-care. What this basically means is that the illness itself regulated how the patient looks at the treatment. Their concern over possible long-term negative outcomes did not factor into how the patient took care of their diabetes.
In studies like these where they looked at coping and personality, they showed that conscientiousness was related to active, problem-focused coping styles. Those patients who are really interested in learning about diabetes and how best to take care of themselves had a better understanding of the disease through their own research. This, in turn, helped the patient have a stronger belief in the effectiveness of taking care of the diabetes. This then gave those patients a more optimistic view of their treatment and outcome (Skinner et al, 2002, p. 33).
Skinner goes on to state that, "Although personality is not implicated as a target for intervention, it may be that personality measures can be used to assess the need for educational or psychological input" (2002, p.34).
Another study did something similar to Skinner’s only this focused on the parents, or more specifically, the mothers of children who have recently been diagnosed with diabetes. The study was looking at the correlation between the mom’s ability to cope and the glycemic control of the child. Specifically, Kovacs and colleagues asked three research questions; 1) Are mother’s emotional symptoms over the course of Insulin Dependent Diabetes Mellitus (IDDM) related to illness duration, the extent of initial symptomology upon learning of their child’s diagnosis, the characteristics of the child, or demographic variables? 2) Does the emotional well being of mothers over time vary as a function of IDDM-related variables, namely, the child’s compliance with the medical regimen, metabolic control, or rehospitalizations? 3) Is maternal symptomology over time related to problems in coping with the management and implications of IDDM?
Kovacs’ study showed that there was relevance over the mother’s symptomology at the initial time of diagnosis and how she continued during the first year to cope with her child’s needs. However, their findings also showed that there was a dramatic decrease in the mother’s symptomology after the first year (Kovacs et al, 1990, p.18).
What was interesting to see is that in this same study, Kovacs and colleagues also discovered that mothers in a higher SES exhibited the most depressive symptoms. In other words, these researchers found that the more educated mothers learned more about the disease, and were more involved. But with that knowledge they became more discouraged about the disease itself. So, in turn, the less educated mother who just takes care of managing the daily issues of her child’s disease may have a smoother transition at the time of diagnosis and later on. Over all, though, Kovacs and her colleagues did show that over all, with time, mothers of diabetic children did appear to adjust well to their child’s disease (Psychological Functioning Among Mothers of Children with IDDM: A Longitudinal Study, 1990, p. 20).
As with Skinner’s group, Kovacs’ group did surmise that mothers who could benefit from psychological intervention can be identified early in the course of their child’s IDDM and can be provided with the appropriate counseling.
On a similar note, Catherine Davis and colleagues did a study called Brief Report: Parenting Styles, Regimen Adherence, and Glycemic Control in 4 to 10 year old Children with Diabetes. The results of their study showed that parental warmth was associated with better adherence rating. Parental restrictiveness was associated with worse glycemic control. Black ethnicity and lower socioeconomic status (SES) were associated with more parental restrictiveness and worse glycemic control. These results suggest that authoritative parenting, characterized by support and affection may have a bigger advantage for regimen adherence and glycemic control for school-aged children (Davis et al, 2001, pp.123-129). Hence, this correlation between parenting styles and control over the child’s IDDM should show the medical professionals that adequate training as well as emotional support for the parents could go a long way to help the child have better control over his or her diabetes.
In the book, Psyching Out Diabetes; A Positive Approach to Your Negative Emotions, the authors start the book out with the section called "Emotions: The first Line of Defense". June Biermann, who lives with diabetes and Barbara Toohey, her traveling companion and co-author, talk about how, back in the 1990’s people with diabetes would contact them to talk about diabetes. Those who wrote would usually say something to the effects of "Life is much easier when you can share your problems with someone who has gone through similar ordeals." Another reason that these two were contacted by other diabetics is that the doctors and nurses had offered little or no help for the frustration of trying to fit diabetes into their lives. A mother of a diabetic daughter wrote to say that health professionals do not realize that the biggest barrier to successful treatment was their (medical professionals) inattention to their patient’s emotional health. This mother tried to point out that most patients are troubled more by the emotional factors associated with diabetes than by its biomedical aspects (Rubin, Biermann & Toohey, 1992, pp. IX-XIV).
Over fourteen years later these exact same words are still being said today. This was the consistent voice I heard from those who responded to the survey. Why is it that the medical professionals seem to take little to no interest in the emotional and psychological aspects of their patients who are diagnosed with a chronic illness? Why is it that these same professionals seem to care very little for the emotional upheaval that is thrust upon parents when their child is diagnosed with a chronic illness like diabetes?
Dr. Rubin describes emotional pain as smoke alarms "They wake you up so you can get yourself out of danger" (Psyching Out diabetes, 1992, p. XVIV). Rubin discusses the same grief responses as were previously discussed: denial, anger, depression, and grief. But Rubin goes on to add some additional emotions to the diabetic’s repertoire.
Obsession, or being too preoccupied with diabetes is like the other side of the coin to denial. It is good to be conscientious about the disease but placing too much focus on it can be detrimental as well. But, Rubin states that it is common for those who are newly diagnosed to go a little overboard when trying to learn as much as they can. He does admit that if a person feels they must go one way or the other, it is better being a tad obsessed that being in denial, especially in the beginning after diagnosis (Skinner et al, 1992, pp. 40-41).
Fear is another emotion that Dr. Rubin and his co-authors talk about. When a person is diagnosed with diabetes they come face to face with their own immortality. For parents of a child who has been diagnosed, this may become one of the reasons why they become so depressed and angry. The old wives tales of how a diabetic doesn’t have long to live is what most people hear and remember. It is not until the diabetic or parents start to learn more about the disease that they discover this just is not true today.
Sometimes this same fear can be a motivating force to helping a person take better care of him or her self. There is a fine balancing act between realizing that there could be complications associated with diabetes and trying to maintain good control to try and avoid, if possible, those same complications (Rubin et al, 1992, pp.140-141).
Rubin refers to frustration as the diabetic’s constant emotional companion. Some of the most common reasons patients give for feeling frustrated is that diabetes is something you have to keep thinking about 24/7, 365 days of the year. Another source of frustration is brought about by the ignorance of other people regarding diabetes and its treatment.
People with diabetes are also very frustrated by the relatively slow progress of medical science in it efforts to develop medical advancements for diabetes. But the most frustrating part of diabetes is the unpredictable nature of their own bodies (Rubin et al, 1992, pp. 167-168).
Embarrassment is another emotion that Rubin talks about. He does state that the older a person gets the less likely they are to become embarrassed by anything they do pertaining to their diabetes. It is most common for younger people to feel embarrassed by the daily rituals they must do in order to take care of their diabetes. This is especially true for teenagers and other school kids. The idea of being different is hard on the young. Diabetes has been known to take its toll on that age group. Once a person with diabetes becomes comfortable with the disease, s/he is less likely to feel embarrassed.
"Any chronic illness will make a child-whether five or fifteen- feel different from other kids, both in the child’s eyes and in the eyes of friends. But feeling "different" may also make a child feel uncomfortable, hurt, or even cheated" (Caring for the Diabetic Soul, 1997, p.155).
Guilt is often an emotion associated with the parents of a child. Rubin states that the diabetic can also feel guilty over being diagnosed with diabetes. A sense that they did something wrong or they are being punished by God, or whomever, because they are basically a bad person. These types of thoughts can then lead to additional guilt over having even thought them in the first place.
I know that many of the parents in the survey stated that the guilt they felt after diagnosis was overwhelming. A mother will feel guilty because she thinks she did something wrong that caused her child to become diabetic. It is only with counseling or talking with other parents that she can learn to overcome this sense of guilt.
In the Diabetic’s Book, the author talks about how, sometimes, the diagnosis of diabetes can be worse for the parents of a child diagnosed than for the child themselves. "For many of them their guilt feelings, anguish, and constant worry are exquisite torture. Parents often lie awake fretting through the night while in the next room their diabetic child sleeps—appropriately enough—like a baby" (Biermann & Toohey, 1998, p. 166).
In his book, Awakening From Grief, Finding the Way Back To Joy, John Welshons talks about how people face the guilt and confusion of having done something ‘wrong’ that brought on such terrible things, like disease. He goes on to say, "religions and philosophical systems have done us a disservice by suggesting that being good and pious will protect us from difficulty, ill health, problems, sadness, and death" (2003, pp. 25-29).
It is imperative that families as well as the patient be told immediately up front that they did nothing wrong and that God is not punishing them for something they may have said or done. The parent did not feed the child too much candy and the child did not bring on the diagnosis of diabetes by doing something he or she should not have done. And yet, these are what many of the patients and their family members feel after the child has been diagnosed with diabetes.
Getting the patient and the family help at the very beginning is what will hasten the initial recovery period for most. Getting the patient and their family connected with others who really know what it is all about can improve the child’s response and cooperation as well as the well being of the entire family.
Parents need to be given a chance to connect with other parents, not only to learn more about the day-to-day experiences of living with a diabetic child, but to also vent the frustrations and other emotions that occurs in order to be allowed to share and have a place to "unload" and know that the person receiving the vent really knows what is being talked about.
Even fifteen plus years ago patients dealing with diabetes stated they really needed to have an opportunity to share, not just with someone, but also with someone who understood. Anderson and Rubin talk about finding other resources for their patients with diabetes. "There will be times when diabetes is too much for a person to cope with…When this is true, try to direct the patient to other resources….diabetes support groups….coping skills classes" (Practical Psychology for diabetes clinicians, 2001, p. 70).
When a person is first diagnosed with diabetes it is not helpful to have others tell him or her that diabetes is not that bad, or it could be worse. Talking to another person who has had diabetes for a while helps. Seek out support people, those whom you can talk comfortably and to whom you can share your true feelings and thoughts (The Diabetes Sourcebook, 1999, p.146). It would be nice if the clinics and hospitals all had this type of information to give out to their patients.
In his book, Coping with Diabetes, Robert Phillips again stresses the need for the patient to connect with others who are dealing with the same issues. In his chapter talking about coping with your emotions, he talks about the benefits of joining a support group. "Most important—these groups show you that you are not alone---and it is much easier to live with a difficult problem when you know that you are not alone." He goes on to say, "Members of support groups all have a common goal: to learn how to live as best they can, and to do as much as they possibly can. Learning how others cope can be a tremendous source of support, especially if you really want to cope better but are not always sure how to do it" (2000, p.196).
When William Polonsky was working at the Diabetes Treatment Unit (DTU) at the famed Joslin Clinic many years ago, he would interview patients prior to their stay ending to see what they liked most about their stay at the clinic. Surprisingly enough, a lot of the patients responded that the best part of their stay was "the smoking room". Of course this was in the days where patients could still smoke in special areas in the hospital. The reason, "patients felt that the smoking room made a big difference in their lives because this was the place where they could hang out with each other. In the smoking room, you could realize that you were not alone, that others shared the same worries, fears, aggravations, and problems that you had. You could make new friends, learn the very best tips about diabetes management, or gossip about the new DTU physician" (Diabetes Burnout, 1999, pp. 215-216).
Polonsky goes on to say that he and his colleagues have found that among their patients, about one in three feels isolated with diabetes, that there is no one to whom they can really talk to about their feelings about diabetes. Almost the same number feel unsupported by their friends and family. It is hard because most of them really can’t understand (Diabetes Burnout, 1999, pp. 217-218).
This is not an exclusive problem with the patients themselves. Parents of young children who have been diagnosed with diabetes have the same need for a "smoking room" that those with diabetes do. A common and safe place where they can go and share their feelings, frustrations, anger, and knowledge is what they need. Especially for parents of newly diagnosed kids who really could learn so much from those parents who have been living with and dealing with this disease for a longer amount of time. To be able to share the wealth of knowledge can not only help the families but also help the medical professionals who are so busy with their practice and not always available to answer the simplest of questions.
In his book, ZEN and the Art of Diabetes Maintenance, Charles Creekmore quotes a simple passage from Erich Fromm’s book, The Art of Loving. "What boggled me about this classic work was his simple but brilliant deduction about the source of all human anxiety. It is created by loneliness" (2002, p. 58). The anxiety of a newly diagnosed parent could mostly be eliminated by the knowledge that they are not alone.
Snoek and Skinner state "It is essential that health care providers who work in pediatric diabetes appreciate and address the many stresses and demands confronting parents of children with diabetes by promoting the development of clinical services, childcare referral sources, educational materials and support groups for families living with diabetes." Support groups and educational materials targeted towards families with children with diabetes can also help parents feel less alone and can normalize feelings of guilt, anxiety and fear" (Psychology in Diabetes Care, 2000, p. 9).
Limitations and challenges in writing this thesis came mostly in the lack of written material for this subject matter. There is plenty of material that talks about diabetes. There is plenty of material that talks about psychology and emotions. But I found that when trying to cross-reference the two, I usually came up with one or two references or nothing at all.
A great deal of my information actually came from my own personal insight into this subject matter. As a parent to a child who was diagnosed with diabetes at the age of five and a half, and someone who has been living with this disease and helping others in my community for the past seven and a half years, I have come to learn a great deal about the Emotional and Psychological Effects of Dealing With Diabetes.
The fact that there is very little information targeted at this subject matter leads me to believe that more needs to be done to help those living with disease, especially with their emotional needs. Even when I went to the American Diabetes Associations new database to do research, there was absolutely nothing there that I could have used for my thesis. How sad is that?
I want to say Thank You to all of the families who have contributed to this research and to all of those who are faced with the daily struggles of diabetes. I want to thank my son, Joshua, who is my inspiration to strive to do and be better in everything I do, not just as his mother. He is a real trooper and has faced many trial and tribulations in his young life. He has taught me the real meaning of perseverance.
18. Skinner, T.C., Hampson, S.E., and Fife-Shaw, C. (2002). Personality, Personal Model Beliefs, and Self-Care in Adolescents and Young Adults With Type 1 Diabetes. Health Psychology, Vol. 21 (1), 61 – 70.