001

Table of Contents
 
Title Page
Copyright Page
Dedication
Foreword
References
PREFACE
Acknowledgments
 
Part I - Overview and Introduction: Theoretical Framework for Collaborative Practice
 
Chapter 1 - When a Young Person’s Health Becomes Problematic
 
Interprofessional Collaboration
The Incidence of Children’s Health Conditions
Theoretical Perspective for a Positive Helping Approach
The Attribution of Meaning Related to a Medical Condition
Issues of Identity, Competency, and Future Life Planning
Examples of Children’s Responses to Serious Medical Conditions
Who Are the Helpers?
Summary
Appendix: Medical Resources
References
 
Chapter 2 - The Emotional Impact of a Young Person’s Illness on the Family
 
Introduction
Stages of Coping: The Role of Meaning
Losses and Grief
Adaptation in the Short Term and Long Term
Family Members: Siblings
Summary
References
 
Chapter 3 - The Economic, Social, and Cultural Context of Health Care
 
Estimates of Prevalence and Need
Indicators of Access to Quality Care
What Influences Access to Quality Care?
Financing Health Care
Social and Cultural Considerations
Health Disparities: The Perfect Storm of Policy, Practice, and Need
Strategies for Facilitating Access to Quality Care
Summary
Conclusion
References
 
Part II - Helping Approaches of Practitioners in Different Settings
Chapter 4 - A Behavioral Pediatrician’s Perspective on Helping Children Recover ...
 
Introduction
What Is Trauma?
What Is Medical Trauma?
Similarities of Medical Trauma to Other Trauma
Factors That Can Make a Medical Experience Traumatic for a Child
Special Considerations
Complicating Factors
How Can Posttraumatic Symptoms from Medical Trauma Interfere with Normal Child Development?
What Does the Clinician Need to Know to Help a Traumatized Child?
The Role of a Behavioral Pediatrician
Summary
References
 
Chapter 5 - Child Life Practice in Hospitals
 
Introduction: What Is Child Life?
Preparing Children and Their Families for Procedures
Procedural Support
Play and Expressive Therapies
Collaboration with Other Disciplines: Nurses, Medical Doctors, Social Workers, ...
Management of Pain and Distress
Death and Dying
Advocacy
Special Events
School Reentry
Summary
References
 
Chapter 6 - Working with Families of Medically Challenged Youth
 
The Role of Counselors and Play Therapists
Stress and Coping
Assessments
Using Filial Therapy to Assist Parents
Helping Siblings Deal with a Disabled Brother or Sister: Support Groups and ...
Summary
References
 
Chapter 7 - School-Based Interventions for Children and Youth with Medical Conditions
 
Introduction
Legal and Ethical Considerations
Social and Emotional Adjustments
Summary
References
 
Chapter 8 - School Social Work Interventions for Medically Compromised Youth ...
 
Review of Literature: Models of Service
Theoretical Framework and Service Model
Challenges
References
 
Chapter 9 - Strengths-Based Group Work with Children
 
Collaborative Role of the Medical Social Worker
Theoretical Framework
Summary
References
 
Chapter 10 - Play and Expressive Therapies with Medically Challenged Children ...
 
Play and Expressive Therapies as Helping Interventions
Using Creative Therapies with Medically Challenged Youth
Selected Anxiety Management Techniques
Cognitive Behavioral and Crisis Intervention Play Therapy
References
 
Chapter 11 - Meeting the Spiritual Needs of Children with Chronic and ...
 
The Spiritual Lives of Children
The Spiritual Needs of Children Coping with Chronic Illness
The Spiritual Needs of Children Coping with Life-Threatening Illness
A Model of Spiritual Care
Family Resiliency Stories
References
 
Part III - Challenges and Issues Associated with Chronic, Ongoing, or Recurring ...
Chapter 12 - Medical Conditions Present at Birth
 
Etiology
Medical Conditions
Challenges Presented by Various Medical Conditions
Interventions and Supports for Children and Families
Summary
References
 
Chapter 13 - Medical Conditions That Appear during Early Childhood
 
Introduction
The School’s Role
Selected Medical Conditions
Summary
References
 
Chapter 14 - Other Conditions That May Occur in Childhood or Develop in Adolescence
 
Introduction
Theoretical Underpinnings
Selected Medical Conditions: Asthma, Type 1 Diabetes Mellitus, and Eating Disorders
Summary
Appendix
References
 
Part IV - Acute Health Crises
Chapter 15 - Outpatient Counseling for Children and Youth with Life-Threatening Conditions
 
Counseling Approaches for Childhood Cancer
Counseling Approaches for Children and Youth with HIV / AIDS
References
 
Chapter 16 - Hospital Treatment of Children and Youth with Life-Threatening Conditions
 
Introduction
Conceptual Models and Treatment Approaches
Treatment and Interventions
Interdisciplinary Collaborative Practice
Family-Based Practices
Anticipatory Bereavement and End of Life
Summary
References
 
Chapter 17 - Helping in the Emergency Room after Accidents and Traumatic Injury
 
Impact of Traumatic Injuries
Organizing Theoretical Framework: Model of Pediatric Medical Traumatic Stress (PMTS)
Collaborative Intervention
Applied Assessment and Intervention
Summary
References
 
Part V - Challenges and Guidelines for Helping
Chapter 18 - The Challenge of Maintaining Hope and Fostering Resiliency
 
Children and Youth in Family and Community Context
A Trauma/Crisis Perspective on Acute and Chronic Illness
Using Cognitive Methods to Enhance Self-Esteem and Improve Coping
Preventive Interventions to Assist the Practitioner in Avoiding Vicarious Traumatization
References
 
Appendix
ABOUT THE EDITOR
ABOUT THE CONTRIBUTORS
Author Index
Subject Index

001

To all the children and youth who manage to carry on their lives
despite serious health conditions . . .
and
to the professionals whose committed work with these youth
contributes to their resiliency and determination to live their
lives to the fullest

Foreword
Barbara Sourkes, PhD
If kids are normal, not sick, they like to be treated special. But if kids have a disease, they want to be treated normal.
11-year-old child (Sourkes, 1995, p. 82)
 
I’ve had a closer relationship with my family than most other kids because I’ve needed them more these last years.
11-year-old child (Sourkes, 1995, p. 87)
These wise and incisive statements capture the essence of children’s experience living with a serious medical condition. They long first and foremost to be seen as children, with the assurance that their identity remains larger than the “special” status of being a vulnerable patient. In fact, many of these children live a double life: They long for the normalcy of daily life and at the same time they live with the “abnormal” presence of illness (Sourkes et al., 2005, p. 370). From looking to feeling to being normal, the concept has implications for the child’s sense of competence, coping, and self-esteem. The 11-year-old girl quoted in the epigraph continued: “Once you have a disease, people treat you as if you’re not capable. Even though it’s not true, it makes you feel really bad about yourself (Sourkes, 1995, p. 82).
Most of these children recognize the impact of their illness on the entire family, and instinctively reflect upon the child-in-the-family as a unit of its own. Each family has its own identity, strength, and vulnerability, and it is within this framework that the child struggles to withstand and integrate the illness. Children’s ability to cope is greatly influenced by their family—the individual and collective responses of its members. Under optimal circumstances, “the interior of the family assumes a central role in preserving the . . . [child’s] . . . psychological integrity” (Rait and Holland, 1986, p. 4).
The face of childhood illness is changing rapidly in the light of medical and scientific advances. Many diseases that were once uniformly fatal are now life-threatening in nature, with longer-term survival or even cure as an outcome. Chronic conditions that used to necessitate long-term hospitalization are now treated primarily on an outpatient basis. For those children who are facing death, hospice care has enabled many children to be at home for this last chapter. As a result of all these factors, children who are living with medical illnesses are far more visible in the community. It is therefore incumbent upon health and mental health professionals to broaden our concept of care to include the children’s reintegration into that wider world.
The newly emerging interdisciplinary field of pediatric palliative care encompasses many of these children. Palliative care is defined as comprehensive care of children with life-threatening conditions (i.e., where prognosis is uncertain). It focuses on quality of life for the child and support for the family, including respite and bereavement care, if appropriate. Pediatric palliative care covers a much broader spectrum than the traditional and narrow definition that referred almost exclusively to the (imminently) dying child.
Helping Children and Adolescents with Chronic and Serious Medical Conditions is an important contribution to the evolving literature in psychosocial aspects of pediatric conditions. It is particularly timely given the increasing attention to the interaction between physical and mental health. Furthermore, children’s psychological distress is now more often conceptualized as a symptom that must be addressed and can be ameliorated. Dr. Webb has assembled authors from a broad range of disciplines (including social work, psychology, pediatrics, nursing, chaplaincy, child life) and settings (hospital, clinic, hospice, home, school) to address ways to enhance the quality of these children’s lives, as well as that of their families.
The opening section of the book provides the foundation for all that follows. Dr. Webb stresses from the outset that these children and families are facing extraordinary challenges and that an optimal clinical approach should focus on their strength and resilience rather than on pathology. Furthermore, the experience of these children and families must be viewed from an ecological perspective: As the child is embedded in the family, so the family is embedded within a social, cultural, and economic context. Access to care is a critical issue, and barriers within the current health care system render children and families even more vulnerable. Also addressed in this section is the impact of the illness on the healthy siblings. These children live the illness experience with the same intensity as the patient and parents; yet all too often their needs are underestimated or neglected in the dramatic focus on the ill child. In the words of a group of siblings, “Don’t brothers and sisters count too?” (Sourkes et al., 2005, p. 371).
The following sections of this book present a multifaceted portrait of clinical approaches: practitioners from a variety of disciplines who treat children with a variety of medical conditions across a variety of settings. The reader is struck by both the unique and overlapping nature of these interventions, a reflection of the need for specialization within an integrated and seamless continuum of care for these children. The focus on school as a primary setting for care (along with the medical and home environment) reflects how profoundly school defines the “normal” structure of children’s day-to-day lives. Its constancy can provide an anchor to the child who is coping with significant illness.
Helping Children and Adolescents with Chronic and Serious Medical Conditions provides a wellspring of knowledge, from the theoretical to the clinical. The many vignettes and transcriptions enrich immeasurably the reader’s understanding of the interventions and their broader applicability. The focus on the experience of the professionals who work with these children—the challenges, the sadness, the triumphs—adds a rich dimension to the volume.
Thank you for giving me aliveness. Six-year-old child
(Sourkes, 1995, p. 167)
 
“Giving aliveness” to children whose lives are impacted by illness is the overarching goal for all of us. Dr. Webb and her colleagues have contributed significantly to that mission in the pages of this book.

References

Rait, D., & Holland, J. (1986). Pediatric cancer: Psychosocial issues and approaches. Mediguide to Oncology,6.
Sourkes, B. (1995). Armfuls of time: The psychological experience of the child with a life-threatening illness. Pittsburgh: University of Pittsburgh Press.
Sourkes, B., Frankel L., Brown, M., Contro, N., Benitz, W., Case, C., et al. (2005). Food, toys and love: Pediatric palliative care. Current Problems in Pediatric and Adolescent Health Care, 35(9), 345-392.

PREFACE
In my 30 years of clinical practice as a play therapist with children I often encountered young people who were grappling with physical health problems in addition to the emotional and psychological issues that had prompted their referral. I remember vividly one nine-year-old boy who was having a lot of difficulty dealing with his parents’ high-conflict divorce and his need to adjust to a new stepparent and step-siblings. One day when he was in my office describing to me his frustration at having to sleep in a stepbrother’s room during a weekend visit and interact with this new sibling he didn’t like, my client began to wheeze and gasp for air. I realized that he was having an asthma attack, but I had no idea what to do! His mother had dropped him off and would not return for another half hour. Fortunately, the boy pulled an inhaler out of his backpack and took some deep breaths, thereby relieving his symptoms. Although I had been working with this boy and his parents for more than a month, no one had ever informed me about his compromised health condition, and I immediately realized how the family stress over the divorce and remarriage was affecting his physical well-being. I also became aware that I had been remiss in not obtaining a health history when I took the boy’s psychosocial history at intake, focused on detailed information about the family and about his academic and social adjustment. Unfortunately, this example is not unusual. Many children who are referred for help with their psychological difficulties also have accompanying health problems that interfere with their optimal adjustment in school, with peers, and within the family. Mental health practitioners must ask questions to learn about children’s physical and medical as well as their emotional status.
This example, like many of the cases in this book, illustrates how even a potentially life-threatening condition such as asthma can take a backseat when a child and his or her therapist are focusing on family issues. The same example could have been used with a youngster with juvenile diabetes. Medical conditions that are not immediately evident can nonetheless have a huge impact on the child’s quality of life, and it behooves therapists to be alert to a child’s effort to ignore or minimize a serious health problem. In the case described here, it would have been incumbent on the therapist to have spoken directly to the boy about his medical status, about how he manages in school and after school, and to tell him that she wants to get updated information from his parents about it, since that could be important in her efforts to help him.
The intent of this book is to help practitioners better understand the stresses of children and adolescents, as well as their families, who must find a way to adjust to their youngsters’ physical constraints related to their particular medical condition at the same time they are coping with other emotional pressures. It will serve as a resource for the various professions that work with medically compromised children and adolescents in settings such as hospitals, outpatient clinics, and schools. Because the content of the book focuses on the emotional component of illness for the youth and the family, it will help practitioners understand the impact of ongoing stress as it impacts the young person’s usual developmental trajectory.
When acute or chronic health problems emerge in infancy, or later, they may seriously derail a child’s developmental progression and create daunting problems for the young person and his or her family. This book illustrates the important collaborative role of social workers and other practitioners in helping such a chronically or acutely disabled young person and his or her family achieve the best quality of life possible under the reality of the specific circumstances. Grounded in a strengths-based perspective as it pertains to bio, psychosocial, developmental, and ecological factors. The book promotes ways to help the youth and the family focus on abilities and possibilities rather than on the limitations that accompany acute and chronic health conditions. The book will serve as a resource for social workers and practitioners in medical, school, and community settings where medically compromised children participate in educational and recreational programs and encounter health-related procedures. For example, most children who have asthma and diabetes attend school and engage to the best of their abilities in the regular routine, despite their need for medication, an inhaler, and/or other types of assistance. Children who are seriously disabled may require special education programs. Still other children with previously healthy backgrounds may suffer acute heath crises, such as accidents that require hospitalization, followed by periods of physical therapy and other remediation. Social workers, child life specialists, and school counselors often work together in these situations to facilitate the youth’s optimal adjustment. This book highlights the separate and collaborative roles of these professionals on behalf of youth coping with serious health and medical challenges. The role of interdisciplinary collaboration is emphasized because professionals from different specialties must share the complex challenge of helping medically compromised children and adolescents at home, at school, and in the community, as well as in the hospital.
The book surveys the range of psychosocial, familial, and clinical services that social workers and other practitioners provide for children and adolescents and their families who are coping with various acute medical and health crises and ongoing conditions.
Part 1 provides an overview and theoretical framework for collaborative practice. Part 2 highlights the special contributions of practitioners in different settings who are specialists in the different areas that provide services to youths with acute and chronic medical conditions. The chapter authors in this section discuss the explicit role and contribution of their particular profession and its approach to helping. Chapters in Part 3 demonstrate the special challenges and issues that are associated with chronic medical conditions at various stages of the life cycle. Part 4 focuses on acute health crises and the need for interprofessional collaboration in work with the young person and the family. In order to fully understand this challenging helping task, the book’s content reflects both general topics, such as dealing with ongoing stress, as well as very specific subjects, such as preparing a child for a surgical procedure. A strengths and empowerment philosophy integrates the various chapters with their unified emphasis on helping young people achieve optimal functioning, as outlined in Chapter 18.
This book will be an important resource in advanced college courses that train students to work with medically compromised children and adolescents in settings such as hospitals, outpatient clinics, and schools. At least three professions will find the book valuable as a required text in courses related to health, young people, and families. The professions are social work, child life, and school psychology and counseling. Pediatric nurses, pediatricians, and pastoral counselors will benefit from the content dealing with the emotional component of illness, and special education teachers will also appreciate this detailed focus on the young person’s inner life and struggles to cope with various medical limitations.
The book covers basic information such as establishing relationships and helping clients accept restrictions while striving for as much healthy functioning as possible. It also deals with the unique situation of stress on the family system and the various stages of acceptance of a medical diagnosis, including the management of terminal illness. Cultural, ethical, and spiritual factors are emphasized as applicable to coping with life-and-death issues and to the numerous losses involved in medical situations.
As previously indicated, my interest in this topic grew from my outpatient child therapy practice, in which I encountered youths with medical conditions that were complicating their lives. My own medical experience at the time I initially proposed this book consisted of three different hospitalizations (two for childbirth and one for a broken ankle). It is ironic that in the six-month interval since I delivered the manuscript to the publisher I have had three additional hospitalizations. These have been for more serious conditions and have given me the opportunity to ponder how a young person might experience a hospitalization that potentially could change his or her life in a major way. My own sensitivity to this topic has increased manyfold as a result of my recent personal experience, and my hopes for the book have expanded as I have become more aware of its potential to reduce anxiety and increase adaptation. Hopefully, this will be a useful resource that will help practitioners more effectively help children and adolescents survive and thrive despite their serious medical conditions.
 
Nancy Boyd Webb

Acknowledgments
I am happy to take this opportunity to thank some of the people who have contributed to this book, although it probably never is possible to identify all the people, programs, and resources on whom the authors and I have drawn. An edited volume relies on the expertise of many individuals, and its value may be directly related to the different viewpoints and perspectives represented by the various chapter authors. Since this book is intended to demonstrate collaboration among different professionals, I am very grateful to this group of chapter authors who agreed to write about their specialized roles in helping medically compromised young people. My own circle of professional contacts has widened considerably as a result of working with this group of specialists, and, despite our different backgrounds, I became acutely aware of our unifying purpose in providing services to medically ill youth.
All of the authors cooperated in following my detailed chapter outline and completed the necessary revisions in a timely fashion. An edited book such as this moves at the pace of the slowest author, and although there were bumps along the way, we did manage to submit the edited manuscript within a reasonable time frame. I thank all the authors most genuinely for their willingness to share their specialized expertise for the overall good of the various helping professions that will rely on this book for information and guidance.
In addition I want to mention specifically my gratitude to the people at Maria Ferrerea Cancer Center in White Plains New York for their willingness to permit me to visit their outstanding program and to attend a staff meeting. The helpfulness of Rose Bartone, MSW, in facilitating this was especially appreciated.
All of the clinical cases used to illustrate various situations and interventions have been disguised. Some are composite cases, and others are used with signed permissions of parents who want their child’s experiences to be used to help others. We are grateful to them.
On a personal level, I wish to thank my husband, Kempton, for his constant support and understanding. He transports my boxes of files, books, and office machines to my work places in Vermont and Florida, and he often responds to my request that he read a paragraph about which I want some independent input. He helps keep me grounded and happy.
This is my first experience working with the staff of John Wiley & Sons, and I have found them to be unfailingly responsive and professional in all our undertakings. I thank the dozens of individuals involved in the production process and look forward to having this book come into print so that it can add to the process of helping medically compromised children and youth.

Part I
Overview and Introduction: Theoretical Framework for Collaborative Practice

Chapter 1
When a Young Person’s Health Becomes Problematic
Nancy Boyd Webb
Rose A. Bartone
 
 
 
 
In the best of all possible worlds children would not develop serious health problems. We associate youth with vigor, energy, and well-being. Whereas all parents expect their children to acquire an occasional cold, earache, stomachache, or even a childhood disease such as chicken pox, they typically do not consider the likelihood that their child will develop a serious illness that has no cure and that will require continuous adaptation due to compromised bodily functioning. Similarly, young children, who are normally egocentric and bursting with feelings of strength and invulnerability, are even less likely to understand or accept the constraints of a serious illness or disability. The child thinks that older people sometimes get sick and have to go to the hospital, but not “kids like me.” Therefore, the first challenge in working with medically compromised youth and their families is to help them deal with their initial fear, denial, and sense of unfairness in having to cope with all the pain and disruptions that accompany a serious health condition.
This book presents helping approaches to assist young people and their families handle in a positive manner the stresses involved in living with an illness or disability. Some conditions are evident at birth, and others may arise in early or later childhood or adolescence. The chapter authors discuss the multiplicity of factors that impact the coping ability of the child and family as they struggle to adapt to different acute and chronic health conditions, some of which may be life-threatening. Selected helping approaches that encourage positive attitudes and stimulate family and individual strengths are presented, together with developmental considerations that influence the patient, his or her siblings, and the parents.

Interprofessional Collaboration

Because helping a medically compromised child or adolescent inevitably involves input from a variety of professionals in different settings over many years, this book emphasizes the importance of interprofessional collaboration. Pediatricians, teachers, social workers, pastoral counselors, child life specialists, nurses, and many others typically are involved in any single health crisis. Part 2 of the book highlights the separate and collaborative roles of different professionals on behalf of youth who are coping with serious health and medical challenges. Each profession has its own focus, training, and language, but if children and families are to receive the best possible bio- psychosocial care it is imperative that all helpers be able to communicate with one another and acknowledge and appreciate their distinctive roles and contributions. This can be key to a positive outcome for the patient, the family, and the staff. We hope that the book will serve as a resource for social workers and other practitioners who counsel physically challenged children in medical, school, and community settings where they receive care and participate in various educational, recreational, and counseling programs.

The Incidence of Children’s Health Conditions

Estimates indicate that between 10 and 15 percent of the children born in the United States have chronic health impairments of some kind. Many of these require lengthy and/or repeated hospitalizations and treatments that interfere with the child’s usual activities (Clay, 2004; Phelps, 1998). In addition, several million children are admitted to hospital emergency rooms following severe and catastrophic injuries or illnesses. “Although many of their conditions [are] life-threatening, the large majority of clinically ill or disabled children survive to adulthood” (Perrin, 1989, p. xi).
A national survey of children’s health (U.S. Department of Health and Human Services, 2005) collected data on more than 102,000 households in the United States with children under 18 years of age. Parents were asked to rate their child’s health status in terms of five possibilities: excellent, very good, good, fair, or poor. The majority of parents (84.1 percent) reported that their children’s health was excellent or very good. In contrast, the parents of 7.9 percent of children reported that their child currently had, or had had, at least one of a list of chronic health conditions that they ranked as moderate or severe. It is interesting that the percentages rose with the age of the child, from 4.4 percent among children from birth to age 5, to 9.1 percent among children ages 6 to 11, to 10 percent in the ages 12 to 17. Despite the many achievements of modern medicine, the fact remains that in the first decade of the twenty-first century a substantial number of children and their families continue to be burdened by serious health conditions.

The Most Frequent Pediatric Illnesses

According to Clay (2004), the most common high-incidence pediatric illnesses are the following:
• Asthma. Affects nearly 5 million children under the age of 18 in the United States.
• Diabetes. Occurs in about 15 to 20 children out of 100,000 under the age of 20 in the United States (Daneman & Frank, 1996).
• Juvenile rheumatoid arthritis. Estimated to affect nearly 200,000 children in the United States under the age of 18, with onset occurring as early as infancy and with most cases diagnosed between the ages of 1 and 4 (Cassidy & Petty, 1995).
• Cancer. May take the form of a blood cancer (e.g., leukemia or lymphoma), a solid tumor (e.g., neuroblastoma), or a brain tumor. Although all are being treated with increasing success, in some children the cancer is fatal.

Lower-Incidence Pediatric Medical Conditions

This list is selective and includes conditions that are not as frequent as those already mentioned but that also make physical demands on the child and require sensitive management in schools and other locales where the young person functions:
• Heart conditions. Congenital heart defects affect 8 to 10 children per 1,000; other conditions include heart murmurs and hypertension. Most congenital heart conditions are associated with other congenital conditions, such as Down syndrome (Clay, 2004, p. 26).
• Seizure disorders, epilepsy. About 40,000 cases a year are reported to begin in childhood; about 1 percent of the total population has epilepsy (Clay, 2004, p. 16).
• Blood disorders. Anemia, sickle cell disease, hemophilia.
• Infectious diseases. HIV, bacterial meningitis, hepatitis.
Other chronic and life-threatening conditions that are also frequently seen in children are cystic fibrosis, cerebral palsy, muscular dystrophy, blindness and hearing disorders, Down syndrome, and spina bifida. In order to be classified as chronic, the physical condition must be one that either actually does or is expected to (1) interfere with daily functioning more than three months a year or (2) cause hospitalization for more than one month a year (Wallander, Thompson, Alriksson-Schmidt, 2003).
These illnesses have certain elements in common that often become the focus of various psychosocial interventions. All require that the individual and family grieve and mourn the loss of good health in a young person’s life. They also will necessitate various adjustments to the constraints of the disease or illness and adherence to the prescribed treatment regimen with ongoing follow-up. The responses of each young person will vary according to age- and illness-specific factors, but the pressures of stress and the need for adaptation lead to the development of anxiety and depression in many children (Auslander & Freedenthal, 2006).
This book presents counseling and therapy approaches to assist families in helping their children to achieve the best quality of life possible in their specific circumstance. We also discuss some ways to assist the young person to reconceptualize his or her illness as one that is a manageable challenge despite its restrictions. Different counseling methods are presented that involve the identification and utilization of the strengths of these young people and their families, in contrast to emphasizing the limitations and problems associated with an illness or disability. Clearly, certain hardships constitute part of the situation and cannot be ignored. However, the strengths-based philosophy emphasizes hope and possibility, and these attitudes significantly impact not only the child and family, but also the professionals who work with them. Clinicians are often intimately involved with their patients and families. Evidence-informed practices promise the greatest results for patients and families and also serve to bolster the clinicians’ attitudes about their work. The next section reviews the central concepts on which this helping framework rests.

Theoretical Perspective for a Positive Helping Approach

Several interlocking perspectives form the basis for a helping philosophy that emphasizes a positive framework to be used by professionals who are working with medically challenged young people and their families. This guiding philosophy rests on concepts in the following models of helping:
• Ecological perspective
• Strengths perspective
• Crisis intervention to deal with stress and coping responses
• Individual and family resilience
Each of these interacting perspectives bolsters helping efforts that breathe a spirit of optimism and possibility into a situation that otherwise might be viewed as discouraging or even hopeless.

Ecological Perspective

Rooted in the work of Bronfenbrenner (1979), this concept has been widely adopted to recognize the many spheres of influence that impact any one individual’s life. Each person is affected not only by his or her family and relatives, but also by peers, by the community, and by larger social and cultural influences. Furthermore, these interactive elements are bidirectional; in other words, children are influenced not only by their parents’ attitudes about an illness, but the parents, in turn, are affected by the manner in which the child responds. In addition, the patient and the parents respond to the clinician by looking for clues or “hidden messages” in the practitioner’s facial expression or tone of voice. The dynamics of this ecological person-in-situation relationship are not static, but evolving and ever changing.

Strengths Perspective

Introduced by Saleebey in 1992 and updated in 1997, this approach emphasizes assisting clients to “achieve their goals, realize their dreams, and shed the iron of their own inhibitions and misgivings” (Saleebey, 1997, p. 3). Such an inspirational philosophy becomes implemented through the following six statements of belief (adapted from Saleebey, 1997, pp. 12-15, as summarized by Openshaw, 2007, p. 67):
1. Every individual, group, family, and community has strengths.
2. Trauma, abuse, illness, and struggle may be injurious, but they also may be sources of challenge and opportunity.
3. We do not know the upper limits of anyone’s capacity to grow and change; we must take the aspirations of individuals, groups, and communities seriously.
4. We best serve clients by collaborating with them.
5. Every environment is full of resources.
6. Caring, caretaking, and context are important.
As I read through these guiding principles I can’t help but think that I would far prefer to be treated by someone who was following them in a hospital or clinic setting than by someone who was committed to a disease- or problem-focused medical model.

Crisis Intervention to Deal with Stress and Coping Responses

We all know how stress feels, and we realize that it can range in intensity from a slight irritation (e.g., being late for an appointment) to an overwhelming sense of anxiety (e.g., witnessing an automobile accident). Selye (1978) and Benson (2000) have written about the autonomic physiological changes in our bodies that occur in stressful circumstances. These often include increased heartbeat and changes in breathing and blood pressure that may be accompanied by either the impulse to get away from the situation (flight) or, alternatively, to fight it. Selye called this instinctive reaction the “fight or flight response” (Selye, 1978). People have different abilities to tolerate stress, based on their temperaments, the intensity of the particular stressful experience, and their past histories. Therefore, some people may respond with tears and depression when diagnosed with cancer, whereas other individuals may emphasize their strong intention to fight it. The diagnosis of an acute or chronic illness inevitably generates stress for anyone old enough to understand the terminology and its possible future course. When the stress response is acute, individuals may become so anxious that their functioning is impaired. In these situations, crisis intervention can be quite helpful initially in assisting young patients to employ some cognitive-behavioral strategies and expressive techniques to deal with their anxiety (Goodman, 2007). This will be discussed later.
However, young people have very different coping reactions depending on their level of cognitive development, the responses of family members, and even the expectations of their culture and social environment (Congress, 2004). Professional helpers must acknowledge and respect these variations in response and should subscribe to a philosophy of acceptance of individual differences, which sometimes includes the need to put aside and avoid expressing ones’ personal feelings.

Individual and Family Resilience

Resilience has been defined as “the capacity to rebound from adversity strengthened and more resourceful” (Walsh, 2006, p. 4). As we think about the stresses of medical illness, we realize that this situation must be viewed through a systemic lens. According to Hauser (1999; quoted by Walsh, 2006, p. 12), “Resilience is woven in a web of relationships and experiences over the life course and across the generations.” This statement clearly conveys the concept of a family ethos that might, for example, subscribe to the credo of never giving up. Certainly, parents and grandparents, both deliberately (in what they say) and indirectly (in their actions) convey to children and adolescents their views of acceptable and unacceptable methods of coping with adversity. Resilient families can somehow muster the strength to carry on even when all the cards seem to be stacked against them. Furthermore, family resilience involves not only how families survive, but also how they can “regenerate even in circumstances of overwhelming stress. It affirms the family potential for self-repair and growth out of crisis and challenge” (Walsh, 2006, p. 17). Although this concept may suggest a notion of “superfamilies,” research suggests that with respect to individual behavior, children respond more positively when adults expect good behavior from them (Grusec, Goodnow, & Kuczynski, 2000). Probably the same dynamic would apply to families, thereby promoting their hardiness and resilience. A therapeutic model designed to support families of children with a chronic illness or disability includes the dynamics of hope, empowerment, reconnection, coping and resilience, and reframing (Morison, Bromfield, & Cameron, 2003).

The Language of Medical Conditions

Numerous terms have been used to refer to the physical status of people who have less-than-perfect bodies. Among these are the following:
• Handicapped
• Physically impaired
• Hearing impaired
• Congenitally defective
• Disabled
• Chronically diseased
• Terminally ill
All of these terms have very negative connotations and emphasize the deficits, losses, or disruptions created by the different conditions. A child who has more than one medical condition may be referred to as “multiply disabled.” On the other hand, terminology that emphasizes what the child can do and that focuses on strengths rather than limitations, employs the much less pejorative expression “children with special needs” (Webb, 2003). It is ironic, however, that school programs refer to “children with disabilities” in conformity with the Americans with Disabilities Act (ADA) of 1990 in order to qualify for federal assistance (Friend, 2005). Therefore, we may need to change the language of the laws in order to make it more child-friendly and to encourage schools to use more positive terminology in identifying and planning programs for children who qualify for special education.

The Attribution of Meaning Related to a Medical Condition

It is natural for individuals and families to look for a reason behind the diagnosis of a medical condition and to want to know why it happened. A 14-year-old diagnosed with diabetes asks: “Did I get this because I gained too much weight and because I didn’t follow the doctor’s suggestion that I should exercise more?” His mother wonders if she should have taken more vitamins or somehow behaved differently during her pregnancy. A young child may also think that he or she did something bad to cause the illness and views the illness as a form of punishment. Adolescents may blame themselves or their family heritage by attributing the illness (correctly or not) to “bad genes” or to the fact that their family did something neglectful, such as avoiding regular medical checkups. Sometimes the patients or family members verbalize these questions, but more often they are silent and keep their worries unspoken for fear of creating more upset in the family.
All these uncertainties swirl around and reflect the overriding feeling that this should not have happened to me or my child and that someone or something is to blame. As mentioned, people may not admit their inner feelings, fears, and worries, but they nonetheless ponder them, and many become anxious and/or depressed trying to figure things out. Sometimes children who sense that their condition is serious wonder whether it means that they are going to die. This is especially true in the initial stage right after the diagnosis. It helps to permit these fears to be spoken, because unspoken fears have a way of escalating. The social worker and/or child life specialist can play a critical role in helping the child and parent deal openly with their fears. Chapter 2 discusses the emotional impact of a young person’s illness on the entire family system.
When the illness is one that appears to be inherited, the responsible parent may feel burdened with guilt, even when he or she knows that it was not within his or her power to control the genes that were passed to the child. Sometimes adults who recall their own parents’ responses years ago to a sibling’s illness unconsciously try to avoid repeating a similar situation in their current family situation. This dynamic was poignantly demonstrated in a novel, The Memory Keeper’s Daughter (Edwards, 2005), in which one of the main characters, a physician, had had a younger sister who was born with a “weak heart” and died when she was 12 years old. The man grew up acutely aware of his mother’s terrible and ongoing grief over his sister’s fragile condition during her childhood, which culminated in her eventual death. These memories of his mother’s relentless pain proved to be a decisive factor many years later when the physician delivered his own twin babies in the middle of a snowstorm because he and his wife could not reach the hospital in time. When the man realized at the moment of birth that one of his twins had Down syndrome, all he could think about was wanting to protect his wife from suffering grief similar to that of his mother’s. He therefore made a split-second decision to give the infant with Down syndrome to the attending nurse, with instructions that she was to place the child permanently in a nearby long-term-care facility. The doctor then told his wife that their female twin baby had died in childbirth and that he didn’t want her to see the dead infant. The book graphically portrays how this well-intentioned lie and secret came to control the man and his marriage, as well as the nurse, who actually decided to keep the child and raise her as her own daughter.
The birth of a baby with a medically compromising condition creates many complicated realities for the parents, as illustrated in this book. Professionals who are involved with such families should be prepared to deal with different reactions in various family members and to remember these powerful dynamics:
• Grief responses are inevitable, although they may be denied and hidden.
• Parents are mourning the loss of their anticipated perfect baby.
• Guilt, blame, and shame may dominate the underlying feelings of sadness.
• Family members often are protective of each other and may avoid discussions that could be upsetting.
• Different people respond differently in situations of loss, and often spouses misunderstand the reactions of their partners.
• The pain of loss recurs sequentially and repeatedly over many years.
• Children pick up cues from family members, whether verbalized or unexpressed.
• Counseling and/or therapy can assist the individual and family cope with their confused and upsetting feelings.

Issues of Identity, Competency, and Future Life Planning

When a young person is born with a serious and disabling medical condition and/or when he or she develops a serious illness in childhood or adolescence, this factor often takes center stage and becomes magnified in the individual’s own and his or her family’s lives. The need for repeated visits to the doctor or hospital clinic annoyingly conflict with a youngster’s wish to participate in after-school activities, and the doctor’s treatment protocol can interfere with going to a friend’s house for a sleepover or on a weekend overnight camping trip with the Scouts. A disability or illness “all too often sets (young people) apart and (may be) used to define (them) in ways that minimize their humanity” (Lavin, 2002). Thus, Johnny who used to be considered by his teacher as the boy with the charming smile, now becomes, in his teacher’s perception, “the boy with cancer.” The disease, illness, or disability becomes a major element of the affected young people’s identity, and this may seriously affect their ability to view themselves as competent and capable despite the disability, and it may affect their view of a future with exciting possibilities. Sometimes their appearance changes due to treatments (e.g., hair loss) and they may not be able to attend school because of a compromised immune system. On the one hand, these children may miss their peers, and on the other, they may be relieved not to have to appear in public, because of discomfort about their appearance.
Of course, the ultimate meaning of a diagnosis to an individual depends on his or her age and ability to comprehend its seriousness. A classic study of children’s awareness of their disease and its fatal potential (Bluebond-Langner, 1978) indicated that youngsters go through five stages of understanding, beginning with knowing the name of their disease and its seriousness, to the final realization that death is a possible outcome if the treatment plan doesn’t work. Children who regularly attend hospital clinics and who see and make friends with other ill youngsters there may talk about and compare their symptoms with these peers. Many of them become very knowledgeable about their conditions, their treatments, and their prognoses. Increasingly, hospitals and clinics that treat such young people offer services such as specialized support groups, printed materials about specific illnesses, and lists of web sites that provide information and contact with others. This educational process is empowering to the patient and the family. The appendix of this book lists numerous resources.
Infertility as a side effect of treatment is a reality that adolescent cancer patients must face. Sexuality and reproductive rights are sensitive areas to address with both patients and their families. Adolescents are easily embarrassed and may be resistant to an open discussion on the topic. However, preserving the ability to reproduce is of paramount importance. Clinicians working with the families must be sensitive to the religious and cultural background of the families and provide support and education on this topic. An excellent web site dealing with this is http://www.fertilehope.org. Even after treatment, late and secondary effects of cancer may occur, and secondary cancers are always a possibility. In these instances, long-term loss and grief counseling should be made available.

Examples of Children’s Responses to Serious Medical Conditions