I’vehadacloserrelationshipwithmyfamilythanmostotherkidsbecauseI’veneededthemmoretheselast years
11-year-oldchild(Sourkes,1995,p.87)
These wise and incisive statements capture the essence of children’s experience living with a serious medical condition Theylongfirst andforemost tobeseen aschildren, withtheassurancethat theiridentityremainslarger 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”(RaitandHolland,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 conceptofcaretoincludethechildren’sreintegrationintothatwiderworld
The newly emerging interdisciplinary field of pediatric palliative care encompasses many of these children Palliativecareisdefinedascomprehensivecareofchildrenwithlife-threateningconditions(ie,whereprognosisis 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 definitionthatreferredalmostexclusivelytothe(imminently)dyingchild
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 distressisnowmoreoftenconceptualizedasasymptomthatmustbeaddressedandcanbeameliorated.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 ofthesechildren’slives,aswellasthatoftheirfamilies.
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 illchild.Inthewordsofagroupofsiblings,“Don’tbrothersandsisterscounttoo?”(Sourkesetal.,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 copingwithsignificantillness
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 thevolume
“Giving aliveness” to children whose lives are impacted by illness is the overarching goal for all of us Dr Webb andhercolleagueshavecontributedsignificantlytothatmissioninthepagesofthisbook.
Sourkes, B. (1995). Armfuls of time: The psychological experience of the child with a life-threatening illness. Pittsburgh:UniversityofPittsburghPress.
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 theirreferral Iremembervividlyonenine-year-oldboywho washavingalot ofdifficultydealingwithhisparents’ 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 immediatelyevident cannonethelesshaveahugeimpact on thechild’squalityoflife, andit behoovestherapiststo 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 aboutit,sincethatcouldbeimportantinhereffortstohelphim
Theintent ofthisbookistohelppractitioners betterunderstandthestressesofchildrenandadolescents, aswell 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 theyoungperson’susualdevelopmentaltrajectory
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 illustratestheimportantcollaborativeroleofsocialworkersandotherpractitionersinhelpingsuchachronicallyor 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 andpossibilitiesratherthanonthelimitationsthataccompanyacuteandchronichealthconditions Thebookwill serveasaresourceforsocialworkersandpractitionersinmedical,school,andcommunitysettingswheremedically 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.Theroleofinterdisciplinarycollaborationisemphasizedbecauseprofessionalsfromdifferentspecialties must share the complex challenge of helping medically compromised children and adolescents at home, at school, andinthecommunity,aswellasinthehospital.
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 andhealthcrisesandongoingconditions
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 onhelpingyoungpeopleachieveoptimalfunctioning,asoutlinedinChapter18
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 withvariousmedicallimitations.
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 tothenumerouslossesinvolvedinmedicalsituations
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 effectivelyhelpchildrenandadolescentssurviveandthrivedespitetheirseriousmedicalconditions
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 varioushelpingprofessionsthatwillrelyonthisbookforinformationandguidance.
InadditionIwant tomentionspecificallymygratitude tothepeopleat MariaFerrereaCancerCenterinWhite Plains New York for their willingness to permit me to visit their outstanding program and to attend a staff meeting.ThehelpfulnessofRoseBartone,MSW,infacilitatingthiswasespeciallyappreciated.
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 usedtohelpothers Wearegratefultothem
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 groundedandhappy.
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 helpingmedicallycompromisedchildrenandyouth.
PartI
Overview and Introduction: Theoretical Framework for Collaborative Practice
Chapter1
When a Young Person’s Health Becomes Problematic
NancyBoydWebb RoseA.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 disruptionsthataccompanyaserioushealthcondition
This book presents helping approaches to assist young people and their families handle in a positive manner the stressesinvolvedinlivingwithanillnessordisability Someconditionsareevidentatbirth,andothersmayarisein 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 thepatient,hisorhersiblings,andtheparents.
InterprofessionalCollaboration
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 participateinvariouseducational,recreational,andcounselingprograms
TheIncidenceofChildren’sHealthConditions
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 (US 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 (841 percent) reported that their children’s health was excellent or very good In contrast, the parents of79percentofchildrenreportedthattheirchildcurrentlyhad,orhadhad,atleastoneofalistofchronichealth conditions that they ranked as moderate or severe. It is interesting that the percentages rose with the age of the child, from 44 percent among children from birth to age 5, to 91 percent among children ages 6 to 11, to 10 percentintheages12to17 Despitethemanyachievementsofmodernmedicine,thefactremainsthatinthefirst decade of the twenty-first century a substantial number of children and their families continue to be burdened by serioushealthconditions.
• 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 and4(Cassidy&Petty,1995)
• Cancer May take the form of a blood cancer (eg, leukemia or lymphoma), a solid tumor (eg, neuroblastoma), or a brain tumor. Although all are being treated with increasing success, in some children thecancerisfatal
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 personfunctions:
• 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,suchasDownsyndrome(Clay,2004,p.26).
• Seizure disorders, epilepsy About 40,000 cases a year are reported to begin in childhood; about 1 percentofthetotalpopulationhasepilepsy(Clay,2004,p 16)
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 monthayear(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 varyaccordingtoage-andillness-specificfactors,butthepressuresofstressandtheneedforadaptationleadtothe developmentofanxietyanddepressioninmanychildren(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 frameworkrests.
TheoreticalPerspectiveforaPositiveHelpingApproach
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 philosophyrestsonconceptsinthefollowingmodelsofhelping:
Each of these interacting perspectives bolsters helping efforts that breathe a spirit of optimism and possibility intoasituationthatotherwisemightbeviewedasdiscouragingorevenhopeless.
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, butevolvingandeverchanging
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,assummarizedbyOpenshaw,2007,p 67):
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 aspirationsofindividuals,groups,andcommunitiesseriously.
4 Webestserveclientsbycollaboratingwiththem
5 Everyenvironmentisfullofresources
6.Caring,caretaking,andcontextareimportant.
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 diseaseorproblem-focusedmedicalmodel
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 (eg, being late for an appointment) to an overwhelming sense of anxiety (eg, 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 strategiesandexpressivetechniquestodealwiththeiranxiety(Goodman,2007).Thiswillbediscussedlater.
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 expressingones’personalfeelings
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 conveystheconceptofafamilyethosthatmight,forexample,subscribetothecredoofnevergivingup 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, andreframing(Morison,Bromfield,&Cameron,2003).
The Language of Medical Conditions
Numeroustermshavebeenusedtorefertothephysicalstatusofpeoplewhohaveless-than-perfectbodies Among thesearethefollowing:
•Handicapped
•Physicallyimpaired
•Hearingimpaired
•Congenitallydefective
•Disabled
•Chronicallydiseased
•Terminallyill
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 morepositiveterminologyinidentifyingandplanningprogramsforchildrenwhoqualifyforspecialeducation
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“badgenes”ortothefactthattheirfamilydidsomethingneglectful,suchasavoidingregularmedicalcheckups Sometimes the patients or family members verbalize these questions, but more often they are silent and keep their worriesunspokenforfearofcreatingmoreupsetinthefamily.
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 ofayoungperson’sillnessontheentirefamilysystem
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 twinshadDownsyndrome,allhecouldthinkabout waswantingtoprotect hiswifefromsufferinggriefsimilarto 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 andhismarriage,aswellasthenurse,whoactuallydecidedtokeepthechildandraiseherasherowndaughter
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 withdifferentreactionsinvariousfamilymembersandtorememberthesepowerfuldynamics:
• Counseling and/or therapy can assist the individual and family cope with their confused and upsetting feelings.
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 boywiththecharmingsmile,nowbecomes,inhisteacher’sperception,“theboywithcancer”Thedisease,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 withexcitingpossibilities Sometimestheirappearancechangesduetotreatments(eg,hairloss)andtheymaynot 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 theirappearance
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 knowingthenameoftheirdiseaseanditsseriousness,tothefinalrealizationthatdeathisapossibleoutcomeifthe 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 isempoweringtothepatientandthefamily Theappendixofthisbooklistsnumerousresources
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://wwwfertilehopeorg 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.
The prize-winning photographer Jill Krementz has published two books that illustrate how children come to understand their different medical conditions (Krementz, 1992 and 1998). The books present timeless portraits of children and youth with different disabilities and medical conditions. Each book consists of in-depth interviews and photographs of the young people, who range in age from 6 to 16 and who have been diagnosed with a variety of conditions and disabilities Many of these interviews (summarized here with the author’s permission) touchingly convey and support the concept of different reactions in children’s level of understanding and acceptance of an illness For example, a 10-year-old girl reported her experience when her mother told her (when she was 7 years old) that she had diabetes She said that she burst into tears because she was afraid that she was going to die. The girl stated that even after her parents convinced her that this was not going to happen, she nonetheless felt that her life was going to change completely (inevitably, she was right) This would have been a goodtimeforclinicalinterventionssuchassupportandreviewofthegirl’scontinuingabilities:thatis,recognition ofwhatshecouldstilldo,ratherthanfocusingonherfearsofpossibleillness-relatedobstaclesinherfuture.
Another child who was 15 years old and who had had cystic fibrosis all his life grappled with the meaning of his illness Heattachedareligiouspurposetobeingill Thisboy,whowenttochurcheveryweek,developedthebelief that there had to be a reason for his illness. In an interview he stated as follows: “God didn’t just draw my name out of a hat. There has to be a reason why I’m sick . . . . Sometimes I think that maybe he knew I’d have this [positive] attitude and he put me here so other kids who are sick can see me and say, ‘Hey, you know, maybe he’s right,maybethereishope”(Krementz,1989,p.105).
Although the majority of the children interviewed in these two books (14 in one and 12 in the other) convey very positive can-do attitudes despite their serious illnesses and disabilities, a few admit to being depressed or even suicidal This was the case with a 12-year-old boy who was born with a hole in his heart and who had a stroke during an operation soon after birth to repair his heart and who subsequently became paralyzed on one side of his body This boy admitted to being very depressed at the limitations on his physical movements as he was growing up, and sometimes he felt that it was so bad he even wanted to kill himself There is no indication that this boy had any counseling to help him; however, the youngster was somehow able to surmount those negative feelings, and he described how, at age 12, he gave a special presentation at school that included asking the audience try to tie one of their shoelaces and cut an orange with one hand so that they could begin to appreciate what it is like to live with paralysis on one side of their body! This same boy had taught himself how to deliver a one-handed serve in tennis, and at the conclusion of the interview he described his hope to learn to relax his spastic muscles through theuseofbiofeedback
It was most impressive to me to notice in these very different personal histories how many of the young people managed to find a way to participate in sports despite their extensive disabilities. It seemed as if they were determined to prove that they could engage in physically challenging activities In fact, while I was in the process of writing this chapter, the local newspaper reported the story of a 21-year-old South African man who had had both legs amputated below the knee when he was 11 months old and who was attempting to participate in the 2008 Beijing Olympics! His special prostheses ultimately served to disqualify him because they supposedly provided a mechanical advantage in running Incredibly, this young man had previously participated in a variety of sports, including rugby and wrestling, and he had taken up running to recover from a rugby injury (St. PetersburgTimes,1/15/08)
As I reflected on this person ’ s motivation and that of many of the disabled children in Krementz’s two books, my psychotherapy-based diagnostic thinking made me label their behavior as “overcompensation” or “denial” However, from the strengths perspective, I realized that these young people were refusing to let their limitations define their lives While that attitude will help them succeed in many life tasks, one wonders how long it will be necessary for them to continue to prove to themselves and others that they are capable Playing rugby with a
prosthesis must take a great toll on a person! Therefore, I believe that it is appropriate for the counselor or therapist to give the suggestion to such young people that they do not need to continue to demonstrate these physical feats unless they truly want to do so In all likelihood each person has many capabilities, including cognitive, musical, and artistic, in addition to physical. It may be that because physically compromised or chronicallyillyoungpeoplehavesuchastrongneedtoprovetheirphysicalabilities,theyignoreorminimizesome of their other strengths Therefore, if I were working with such youngsters in a counseling situation, I might try to have them consider goals that would enlarge their life horizons beyond success in meeting physical challenges For example, instead of encouraging the boy with the one-sided paralysis to spend hours trying to perfect his onehanded tennis serve, I could have gently suggested that he might want to explore other, related areas of achievement that would not require two-sided functioning and make such demands on him For example, he might consider applying his interest in sports by using a computer with one hand to become a sportswriter or a reporter for a newspaper or magazine Such occupations could build on his success and self-pride without the frustration of trying to force his body to continue to perform and excel For young people and adults who want to challenge themselves physically, the Special Olympics fulfills this need and can be very gratifying. However, the reality is that few will be able to make a career of physical activity Some may decide to become special education teachers and coaches to younger medically challenged youth, and in this position they can take pride in their role asmentors.
Clearly, the 26 children described in Krementz’s two books do not comprise a valid research sample, and they may not be representative of young people who undergo similar life stresses Nonetheless, their attitude of high motivation for personal achievement is commendable, as is their sincere interest in helping other people understand their illnesses. Positive attitudes such as these were labeled “posttraumatic growth” in a research study with 150 adolescent survivors of cancer and their mothers and fathers a year after treatment (Barakat, Alderfer, & Kazak, 2006) The majority reported positive changes in their views of self, their relationships with others, and plans for their future (p. 417). Therefore, although the diagnosis of cancer may be considered to be traumatic, posttraumatic growth (as well as distress) may characterize the responses of those involved While we realize that not all ill or disabled youth receive optimal care, some, if not most, do However, even with the best of care, some patients succumb to their illness and die. Even so, the majority of ill children survive until adulthood, and this book intends to guide professional counselors in helping those children and their families maintain hope and positiveexpectationsfortheirfutures
