Chronic Conditions: Emotional Responses
A Chapter in Core Concepts of Pediatrics, 2nd Edition

Chronic Conditions: Emotional Responses

Christine Murphy MD and Sally Robinson MD 

The prevalence of childhood disabilities increased by about 15% from 2001-2011, with a significant increase in neurodevelopmental disabilities (1). Despite advances in medicine to improve morbidity and mortality, including for preterm infants, the overall prevalence of spastic cerebral palsy has remained unchanged (2, 3). Many children with chronic healthcare needs (including but not limited to those with congenital malformations) look different, act differently, speak with impediments, walk with an awkward gait, drool, or are incontinent. It is imperative for the healthcare team who work with such children to recognize their own discomfort.

Physicians often are most comfortable with patients who have well-defined, short-term illnesses. Such patients have a good prognosis for being restored to a previous state of health after specific intervention by the healthcare team. Medical schools teach how to practice illness-focused healthcare quite well, and physicians learn much less about chronic conditions, other than diagnoses and probable causes. Part of the frustration of caring for individuals with chronic illness is the physician's inability to cure or fix them. Therefore, physicians often are reluctant to manage patients with chronic conditions. Some of the reasons for this are explored in this chapter.

Unfortunately, lack of understanding is one reason physicians are uncomfortable caring for these patients. Although there is a broad body of knowledge about management of chronic conditions, there has only recently been a push to publish about this patient population in the medical literature. Often, this topic is published in humanities, nursing, psychology, social science, and public health literature that physicians might not often read. Furthermore, because of differing theoretical frameworks and methods, much of the research in this area is difficult to compare and replicate. Despite these barriers, you are encouraged to explore the literature related to chronic conditions. Truly, physicians will be caring for more children with chronic conditions than ever before.

This chapter is neither a comprehensive review of chronic conditions in childhood nor a treatise on death and dying. It should help you gain insight into these difficult areas and stimulate further reading, thought, and discussion.

Objectives

After completing this chapter, you should be able to:

1. Describe the unique features of chronic conditions and the implications for management for the patient
2. Recognize common emotional responses of patients, families, and healthcare providers to chronic illness, death, and dying.
3. Identify interventions helpful for assisting the patient and family with initial and long-term adjustment to a chronic condition.
4. Describe the supportive role that can be taken by all healthcare providers, the community, and the family.

Photo from Photospin by Denys Kuvaiev

A Common Presentation 

"You didn't tell me she would never walk! You didn't tell me that she would always be so dependent and require so much care! What am I supposed to do now that she's started her periods? Do you know what it's like to have to change her diapers while we're on a vacation, in a gas station, or at a restaurant?" This is Mrs. Danbury's opening statement to Dr. Brown's receptionist, said loud enough so everyone in the waiting area could hear.

 "No one told me it would be like this when she was born. They told me they would do some operations on her back and maybe her head, but they didn't say that she was never going to grow up," she continued.

 "What kind of job will she have? Who's going to help her change her diapers? Will she get married? Will she ever leave home?"

Marvin is a third-year medical student doing a rotation in the office of Irene's pediatrician. Usually students do not hear parents who become upset with their physician, but this time Mrs. Danbury is really upset and unable to contain herself. The office nurse takes over at this point. "Mrs. Danbury, I know you're upset and I understand your reasons. How about we move you and Irene into an exam room until Dr. Brown can meet with you? He'll be with you in a few moments."

A quick glance at Irene's chart indicates that she is 13 years old and still can't walk. Not only can't she walk, she can't urinate on her own, and she can't tell when she needs to have a bowel movement. She was born with spina bifida and had done reasonably well after her back repair and ventricular-peritoneal shunt. She is in middle school and progressing normally, at least academically. With the special education department's assistance, Irene is mainstreamed and is doing most of the things her peers do. She enjoys drama and recently appeared in a class play.

Marvin wonders what the doctor will say. This mother is really angry! Dr. Brown feels frustrated by his inability to cure Irene. Over the years he has had many conversations with Irene's mother about allowing Irene to be more independent. He also knows that Mrs. Danbury has a new baby, 6 months old. Earlier today over coffee, Dr. Brown and Marvin, not knowing that a storm was brewing, had a philosophical conversation about how unfair life can be to some children. Multiple cultural and religious beliefs are operating for both the physician and the patient such as guilt, responsibility, duty, God's will, punishment, an eye for an eye. How does the physician reconcile his beliefs with this mother's? Is Mrs. Danbury's apparent anger really grief? Marvin feels relieved that he does not have to face Mrs. Danbury alone and is very glad that he is able to observe Dr. Brown and his team work with this mother and child.

''There are many things that can be done to help Irene become independent," says Dr. Brown. "She has the cognitive ability to learn self-management of her bowel and bladder. Many teens and young adults like Irene can learn to perform their own self-care, like changing her own underpants. She is likely to discover she needs little to no help to perform those changes in the future. Multiple agencies and resources can be used including the school, the state rehabilitation commission, and home health agencies to help provide assistance as Irene learns to manage her own self-care needs. Her abilities to problem solve and to care for her urinating and bowel movements need to be assessed because sometimes these can be impacted even when other areas of thinking are not. Sometimes, children with Irene's health needs still need assistance in the form of reminders to perform the care, even if they are physically capable of doing it."

Dr. Brown & Marvin brainstorm about Irene's situation for a few minutes and decide that the best solution would be to meet with the parents and Irene every 6 months to discuss potential problems and explore solutions together before more serious problems develop. Dr. Brown reflects, "Did you know that none of Irene's classmates in middle school wanted to take her, or even go with her, to the school dance? Would it have been possible to anticipate this? How could you help with the adjustment of a preadolescent with a different physical appearance?"

Dr. Brown continues. "One could argue whether the physician has a role in discussing a school dance, since it isn't a medical problem. However, the successful life of the patient may be related to successful peer interactions. I feel strongly that in patients with chronic conditions, whenever possible, the family, the patient, and their physician should be involved in decision-making. With chronic medical conditions, it is imperative that the family and patient have a significant measure of control. If they decide on the solutions, then they will likely be more compliant in carrying them out. Compliance is the single most difficult issue in caring for patients."

Photo from UTMB facebook archives, permission granted by subject

Common Emotional Responses to Chronic Conditions

Emotional responses to chronic conditions vary widely. However, in order to anticipate and cope with emotions surrounding a chronic condition, you first need to consider some valid generalizations that may be made.   We introduce you here to the Kϋbler-Ross stage theory of adaptation to loss.   The Kubler-Ross stages were constructed by Dr. Elizabeth Kubler-Ross in 1969 in her book "On Death and Dying".

Initially postulated as a process through which patients with terminal conditions (such as cancer) progress, the stages of grief can also apply to the experience of life losses other than death.   Children with disabilities, their families and healthcare providers experience significant loss and grief; and therefore the Kubler-Ross stages are relevant. Understanding one of the most widely accepted models for grief and loss can provide insight to common interpersonal interactions, as well as insight into our own reactions as physicians.

The following information about stages of loss can be used as a tool to assist in conceptualizing grief. Grief responses of patients, parents and siblings, and physicians are considered separately.

Patient's Responses

DISBELIEF AND DENIAL

One way to protect from the reality of a loss of health is to convince ourselves we are well. This is a common initial reaction in children and is reinforced if symptoms are minimal. Disability has little meaning to children unless symptoms are profound. Children's perceptions of disability may relate to whether they are in pain or have their normal routine disrupted by hospitalization. However, children do learn about their chronic conditions and the ways in which the conditions may affect their lives. Initially, denial and disbelief are useful to the patient for allowing time to assimilate a loss that might otherwise be too painful to bear.

ANGER AND RESENTMENT

Patients often become angry when they recognize their loss. The anger might be directed toward God, their parents, the physician, or even themselves. Children with a chronic condition sometimes become manipulative and feel they should never be punished. These same children can use targeted, and usually very effective, behavior to persuade their parents to believe this as well. Other times, the belief begins with the parent. Adolescents can become particularly bitter when diagnosed with a chronic condition, often assigning blame to parents. Some adolescents exhibit self-destructive behavior, such as use of cutting, alcohol or other substances, as a way to demonstrate anger.

DEPRESSION

Depression or sadness reflects a loss, in this case a loss of health. There is a tendency to ask, ''Why me?" Children experiencing this stage mistakenly assume their condition is a form of punishment. Depression symptoms manifest in a variety of ways: loss of interest, poor appetite, crying episodes, withdrawal, and sleep disturbance. While sadness is a pathognomonic sign of depression in adults, children with depression don't always exhibit this symptom. In fact, it is far more common for children to show signs of irritability when depressed. Symptoms in adolescents are varied. They frequently abandon former goals, become withdrawn, "act out," or stop taking their medications. Consideration or attempts of suicide occur in children with significant depression, regardless of their age.

ANXIETY

Anxiety arises from uncertainty. Often, the less that is known about the patient's prognosis, necessary treatment, or projected length of illness, the greater the level of anxiety. Painful procedures and hospitalization are often anxiety-producing. Anxiety about social acceptance and the impact of the condition on social functioning are frequent concerns among adolescents with chronic diseases.

ACCEPTANCE

Acceptance is a relative term. Most patients and families never fully accept their chronic condition. This is probably beneficial. To arrive at a complete state of acceptance might lead to a state of resignation to either disability or death. Patients often learn to live with their chronic condition. Some lead full lives despite or even because of the condition. "Recognition of the condition" as chronic is perhaps a better term than "acceptance", which often implies resignation.

Some children have chronic medical conditions that do not allow independent living, for example, severe intellectual disability, cerebral palsy, and quadriparesis. These children need to have someone attend to their basic needs. Depending on the severity, as adults, they may be able to live in an independent living center with caretakers available for certain times and functions of the day.

Responses of Parents and Siblings

Parents and siblings react to a child's chronic condition in ways similar yet distinct from those of the patient; and at times, the grief of a family member impacts the grieving process of the patient. The stage experienced by the parent or sibling may be complementary or contradictory to the stage the patient experiences. A diagnosis of a chronic condition can be as devastating to the family as the death of a child.

DISBELIEF AND DENIAL

Some parents initially react to the diagnosis of their child's chronic condition by doubting that the diagnosis is correct. Denial does allow family some time to buffer their initial response of hopelessness.

The practice of "doctor shopping" is common, in the hope of finding agreement with the family's denial of the chronic truth. If denial persists, doctor-shopping may prove to be both financially and emotionally costly.

ANGER AND RESENTMENT

Parents experiencing the anger stage sometimes discredit their physician, or become angry with themselves or their child. Some parents place blame for their child's chronic condition on God, each other, or their physician. Parents might be reproachful of themselves when a child is born with congenital anomalies. Guilt is a very common response.

Siblings experience anger and resentment because most parental attention is now focused on the child with the chronic condition. Small children might wish the parents to return a disabled baby for a substitute. The emotional responses of anger and guilt persisting in the family unit, in combination to other factors like financial difficulties and exhaustion, fuels the higher divorce rate among married parents of children with chronic conditions. As many as 75% of these parents divorce within 5 years of a child receiving a chronic condition diagnosis (4).

ANXIETY

Even before birth, parents develop expectations for their children and assume they will live full and happy lives. When children have a chronic condition, parents become anxious not only about the child's health but also about the child's future, as well as their own.

Hospitalizations, painful procedures, possibility of a shortened life, and the financial burden of healthcare all contribute to anxiety. Parents of a child with a chronic condition are at risk for becoming overprotective, further encouraging dependency and separation anxiety in their child. Additionally, parental anxiety is manifested by excessive concern about minor illnesses in generally healthy siblings.  

Siblings often feel anxious about their affected sibling and/or become preoccupied with their own health as well. If parents are anxious, their children's anxiety can be reinforced and strengthened.

GUILT

Guilt feelings are common among parents and siblings of a child with a chronic condition. Parents often feel responsible for the child's condition.

Siblings might believe they have somehow caused the problem. Feelings of guilt arise from their own unkind thoughts and feelings secretly or openly directed at their sibling. Sibling disagreements are sometimes heated, and exchanges such as "I wish you were dead!" can leave a lasting impression.

Unwittingly, healthcare providers sometimes reinforce the negative feelings by unwarranted optimism and being overprotective. 

DEPRESSION

Parents are often more depressed than their child because of their own awareness of what a particular condition means for their child. Their previous expectations for the child must now be altered, sometimes drastically. Social isolation from caring for a child with a chronic condition can exacerbate depression. Families struggle with creating lasting friendships with families who do not have children affected by chronic conditions.

ACCEPTANCE

Adaptive coping by the family is signified by increasingly competent management of their child's chronic condition, or if old enough, allowing the child to take responsibility for management of the condition. When adaptation is achieved, the chronic condition is no longer the family's primary focus of attention.

Responses of Physicians

Families want physicians to provide skillful diagnosis and management plans for of chronic conditions.They expect the physician to support the patient and family and to be accessible, understanding, knowledgeable, kind, and empathetic. At the same time, physicians must carry on a busy practice and become neither discouraged nor tired. It would be rare for a person to possess all these qualities. High expectations from patients and their families, as well as from society, may cause physicians to react in several ways when dealing with a chronically ill patient.

 ANXIETY

Physicians worry if their diagnosis is correct, if they are managing the patient well, whether they are meeting the family's needs, and whether they have communicated adequately with the patient and family.

HELPLESSNESS AND GUILT

It is easy for physicians to feel helpless when dealing with a chronic condition, especially if the prognosis is uncertain or poor, and/or if therapeutic measures are limited. Most physicians who care for children are accustomed to a healthy population whose illnesses respond quickly to treatment and are limited in duration. Because of expectations of our society, physicians sometimes wonder if they should have detected a chronic condition earlier or prevented it altogether.

DEPRESSION

After diagnosing a chronic condition with a poor prognosis, a physician might feel depressed. Occasionally, the family assigns blame to the physician for the condition, which can spur self-doubts regarding professional competency. Feelings of inadequacy arise when the physician falls short of whatever ideal image he or she has created to represent what it means to be a "good" doctor.

AVOIDANCE

When a patient's chronic condition becomes complicated or the child has reached the last stages of a fatal illness, physicians sometimes find it easier not to face the family or patient. Physicians might try to make rounds when they know the family might not be present. Particularly as a child's life draws to a close, teams designate one or two members to act as liaisons with the patient and their family. With very complicated patients, team members sometimes self-select who will be main points of contact as practitioners less comfortable with the situation respond less quickly. Overall willingness of the medical team to communicate with families of these children is frequently reduced compared to their similarly aged, healthy counterparts. The combination of medical team avoidance, possibility of parental anxiety, and actual increased health needs of children with chronic conditions results in parent(s) who appear demanding and unreasonable. These demands should be seen as a plea for help and can be a warning sign of ineffective communication from the medical team. Recognition of fears and feelings of helplessness are of great assistance to these families. Avoidance, on the other hand, can only enhance their sense of helplessness. 

ANGER AND RESENTMENT

Physicians and other team members caring for a child with a chronic condition might come to resent the demands placed on their time and energies by the parents. These telephone calls and other demands on a clinician, like paperwork and insurance clarification, for medical needs for these children are time-consuming. Parents learn quickly they must be the advocate for their child and therefore might telephone frequently about minor illness and other problems, often expecting immediate, personal attention regardless of the circumstances. The overall process sometimes results in feelings of anger or resentment of the patient and their families.

Agreement about expectations must be reached between parents and physician for a healthy relationship to be maintained. If open discussion is not attempted, anger and disappointment will only escalate as demands continue. This is in no one's best interest, especially the patient's, and usually leads to "doctor shopping."

Responses to Dying and Death

Although dying and death have not been considered separately thus far, they can be viewed as the final end of the spectrum of a chronic condition. Therefore, all of the responses discussed so far also apply here, with some important differences.

RESPONSES FROM ADULTS

Dying and death are usually associated with sadness for parents, but may provide a measure of relief when death is inevitable and the patient is suffering.

The medical team might react to a patient's death as a failure on their part. This can lead to depression, helplessness, or even anger with themselves or others.

RESPONSES FROM CHILDREN

Children's responses to dying and death depend upon their ability to understand the finality of death.Usua lly by age 7 up to 11 years, an understanding is reached that death is irreversible. When the child is too young or the thought of death too painful, children do not acknowledge they are dying even though death is imminent. This is difficult for families and staff to understand at times. On the other hand, children are often well aware of their prognosis, even when adults tend to deny it.

USEFUL TACTICS

Denial and hope can be quite useful to all concerned, if they serve to sustain the patient and to keep the family mobilized. If denial is used by the family to totally avoid facing their child's death, they might have an even more difficult time after the loss occurs.

The medical team may accomplish most by acknowledging their own feelings as well as those of the family and by supporting the family as well as one another. As noted before, medical care providers often discover an internal discord with the task of providing hope for a child to whom a cure is not achievable. Identifying other hopeful goals with the family and the child can serve to alleviate some of this discord and helps maintain dignity for the child. Common sources of hope for end-of-life include completing desired tasks prior to death, establishing plans of care for comfort in final days, and creating advanced directives.

 Conclusion

Caring for a child with a complex medical history can be a rewarding and exciting experience. Medical care providers are instrumental in not only managing the medical conditions, but also with assisting families in decision-making for the many aspects of life touched by a child's chronic condition(s). Focusing efforts to improving quality of life for the child and their family must be at the forefront of the medical team's efforts. Understanding the process of grief can help team members concentrate on the emotional needs of all involved parties, rather than becoming entangled in the face-value of the words or actions. Remembering the parent is often the child's expert can profoundly strengthen the physician-patient-family relationship.