Helping Children and Adolescents with Chronic and Serious Medical Conditions

A Strengths-Based Approach

Nancy Boyd Webb

• Publisher: Wiley
• Year: 2010
• ISBN:
  9781118012161
• Edition: 1
• Topic: Politik & Internationale Beziehungen
• Subtopic: Sozialpolitik

Praise for Helping Children and Adolescents with Chronic and Serious Medical Conditions
A Strengths-Based Approach

"Helping Children and Adolescents with Chronic and Serious Medical Conditionsprovides a wellspring of knowledge, from the theoretical to the clinical. The many vignettes and transcriptions immeasurably enrich the reader's understanding of the interventions and their broader applicability."—Barbara M. Sourkes, PhDJohn A. Kriewall and Elizabeth A. Haehl Director of Pediatric Palliative CareLucile Packard Children's Hospital at Stanford

An important and practical guide to providing compassionate care and support to medically compromised children and their families

Helping Children and Adolescents with Chronic and Serious Medical Conditions: A Strengths-Based Approach presents practical guidance on integrating the latest research into evidence-based practice to ensure the best client care. Edited by a top scholar in the field, this essential resource contains contributions from renowned specialists in various helping fields. Utilizing an inter-professional perspective, helping professionals will draw from the experiences and expertise of a wide range of medical professionals, providing a "window" into their roles, responsibilities, and challenges, offering the most effective approaches for working with this special population of children and their families.

Equipping practitioners with the knowledge and skills needed to encourage children's resilience and help them build their emotional strengths, this book uses a caring yet authoritative tone and discusses:

• The emotional impact of illness on the individual and the family
  
  

• Child-life practice in hospitals
  
  

• School-based interventions for children and adolescents with medical conditions
  
  

• How to meet the spiritual as well as emotional needs of children with chronic and life-threatening illness
  
  

With thoughtful coverage of positive helping approaches that encourage family and individual strengths, Helping Children and Adolescents with Chronic and Serious Medical Conditions: A Strengths-Based Approach is an invaluable resource for social workers, teachers, school counselors, and other mental health and medical professionals who work with medically challenged children and adolescents in every setting.

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-perfec...

Table of contents

• Title Page
• Copyright Page
• Dedication
• Foreword
• PREFACE
• Acknowledgments
• Part I - Overview and Introduction: Theoretical Framework for Collaborative Practice
• Part II - Helping Approaches of Practitioners in Different Settings
• Part III - Challenges and Issues Associated with Chronic, Ongoing, or Recurring ...
• Part IV - Acute Health Crises
• Part V - Challenges and Guidelines for Helping
• Appendix
• ABOUT THE EDITOR
• ABOUT THE CONTRIBUTORS
• Author Index
• Subject Index