IACAPAP Textbook of Child and Adolescent Mental Health

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Chapter

I.6

PEDIATRIC PSYCHO-ONCOLOGYSUPPORTING CHILDREN WITH CANCER
Soumitra S Datta, Laurie Cardona, Procheta Mahanta,
Sana Younus & Maria Teresa Lax-Pericall

Soumitra S Datta

Department of Palliative Careand Psycho-oncology, Tata
Medical Centre, Kolkata,
India & UCL EGA Institute for
Women’s Health, University
College, London
Conflict of interest: none
declared

Laurie Cardona

Assistant Professor, Chiefof Psychology, Psychology
Training Program, Yale Child
Study Center, New Haven, CT,
USA.
Conflict of interest: none
declared

Procheta Mahanta
Department of Palliative Careand Psycho-oncology, Tata
Medical Centre, Kolkata, India.
Conflict of interest: none
declaredhttps://www.childrens.com/healthwellness/how-children-get-cancer

This publication is intended for professionals training or practicing in mental health and not for the general public. The opinions
expressed are those of the authors and do not necessarily represent the views of the editors or IACAPAP. This publication seeks todescribe the best treatments and practices based on the scientific evidence available at the time of writing as evaluated by the authorsand may change as a result of new research. Readers need to apply this knowledge to patients in accordance with the guidelines andlaws of their country of practice. Some medications may not be available in some countries and readers should consult the specific drug
information since not all dosages and unwanted effects are mentioned. Organizations, publications and websites are cited or linked toillustrate issues or as a source of further information. This does not mean that authors, the Editor or IACAPAP endorse their content or
recommendations, which should be critically assessed by the reader. Websites may also change or cease to exist.
©IACAPAP 2019. This is an open-access publication under the Creative Commons Attribution Non-commercial License. Use,
distribution and reproduction in any medium are allowed without prior permission provided the original work is properly cited andthe use is non-commercial.
Suggested citation: Datta SS, Cardona L, Mahanta P, Younus S, Lax-Pericall MT. Pediatric psycho-oncology: Supporting children
with cancer. In Rey JM, Martin A (eds), JM Rey’s IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva:International
Association for Child and Adolescent Psychiatry and Allied Professions 2019.

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IACAPAP Textbook of Child and Adolescent Mental HealthA

ccording to the World Health Organisation approximately 300,000
children aged 0 to 19 years of age are diagnosed with cancer each year. The
common childhood cancers include leukemias, brain cancers, lymphomas,
and solid tumours such as neuroblastoma and Wilms tumor. In the past few
decades, the outcome of childhood cancer has progressively improved. In highincome countries more than 80% of children with cancer are cured, although inmany low- and middle-income countries outcome is less favorable.
Children diagnosed with cancer and their families may be psychologically
distressed at the time of diagnosis or later, during the course of treatment. Even
with complete recovery, children may have poor self-esteem, hesitate to get backto their usual life, and their families may remain over-protective for many years
following cure. Some childhood cancer survivors may not fully explore life due tothese worries and fears. Pediatric psycho-oncology is a branch of pediatric liaison
psychiatry and health psychology that deals with the emotional and behavioral
aspects of children with cancer. This includes identifying and managing thepsychiatric comorbidities during cancer care to optimize the medical outcome byinfluencing maladaptive health behaviors such as non-adherence to health advise,and contributing to the rehabilitation of these children so that they are able to reach
their full potential. Assessment and intervention in pediatric psycho-oncology
have to be age appropriate, address parental concerns, and be empowering forthe primary caregivers. Some of the large oncology centers have mental healthprofessionals dedicated to address the psychological needs of children with cancer
but this is not universally available around the world. The present chapter seeks
to be a training resource for mental health professionals to understand and learn
about the psychiatric and psychological care of children and young people withcancer over and beyond the standard child psychiatry and health psychology
interventions.

Sana Younus
Department of Psychiatry,
Aga Khan University, Karachi,
Pakistan.
Conflict of interest: none
declared

Maria Teresa Lax-Pericall
National & Specialist PaediatricLiaison Services, Kings College
Hospital, South London and
Maudsley NHS Foundation
Trust, Denmark Hill, London.
Conflict of interest: none
declaredAcknowledgements
We are indebted to Mr Sourav
Patra of Mandrex Designs,
Kolkata, Ms Devi Nandakumar,
clinical psychologist, and Dr
Arnab Mukherjee, consultant
psychiatrist, for helping us
prepare the educational videos
included in this chapter. The
videos were shot at the Tata
Medical Centre, Kolkata.
Correspondence: Soumitra Shankar Datta,
ssdatta2000@yahoo.com

INTEGRATING PSYCHIATRIC CARE WITH CANCER
CAREChildren with cancer as well as their parents are at increased risk forsignificant psychosocial difficulties during all phases of treatment, including
survivorship (Steele, 2015). The Standards for Psychosocial Care for Children
with Cancer and Their Families (Wiener, 2015) provides the first evidence-based
clinical standards for addressing the psychosocial care of pediatric cancer patientsand their families. These standards recommend that:•

Youth with cancer and their families should receive routine andsystematic assessment of their psychosocial needs during treatment andsurvivorship• High risk patients should be routinely monitored for neuropsychologicaldeficits• Youth and family should have access to psychosocial interventions,
including psychological interventions for invasive medical procedures,and psychiatry as needed• When necessary, youth and families should receive developmentally
appropriate end of life care, including bereavement support.
Patenaude et al (2015) recommend that mental health professionals working
in pediatric psycho‐oncology be experienced in psychotherapeutic interventions

Pediatric psycho-oncology I.6

In the immediate aftermathof a diagnosis of cancer,
many children andparents show high levelsof distress. Parents andyoung people have a needfor accurate informationdelivered in a sensitive
and timely manner. The
Childhood Cancer and
Leukemia group has
resources for parents
including information
leaflets in various
languages. There are also
resources for children
in developing countries,
and guidelines on how tocommunicate with children
with cancer and theirfamilies.

2

IACAPAP Textbook of Child and Adolescent Mental Healthto children with cancer and their families, be trained in grief and bereavement
support, and competent in handling the various ethical issues that are unique topediatric cancer care.
Medical settings with limited mental health professionals need to utilize
other members of the health care team (e.g., nurses, residents) to assist withstandardized psychosocial screening of all pediatric patients at diagnosis. Screeningof all patients during the immediate time following diagnosis has been supported
by research that indicates this is the period of greatest distress for children and theirfamilies (Kazak et al, 2015). Universal psychosocial screening has the benefit ofidentifying children and families with the greatest need of immediate psychologicalsupport.

Click on the image toview the short video clip:
Introduction to Pediatric
Psycho-Oncology (2:33)

Treatment centers with limited mental health resources also need to provide
training to the medical staff in strategies for supporting the emotional healthof families and children by teaching the staff how to recognize normative andproblematic forms of coping, and principles of child development. Additionally,
medical staff should have knowledge about, and access to published and on-line
psychoeducational materials that they can share with families including books andvideos that provide disease education, procedural preparation, and on-line social
support forums (Steele, 2015).
Well-funded, larger pediatric cancer centers may have multiple mental
health professionals integrated in the multidisciplinary medical team. In such
centers, it is possible for several disciplines (child life specialists, psychologists,
psychiatrists, social workers, spiritual leaders) to contribute simultaneously to theemotional well-being of children and their families (Wiener, 2015). The services
offered by these providers may include:••••

Diagnostic evaluation and assessments of children and family members
Development and implementation of psychotherapeutic individual andfamily treatments
Neuropsychological testing, andSchool-based consultation regarding school re-entry.

Additionally, mental health clinicians provide ongoing consultation on thepsychological management of patients to members of the medical team (Wiener
et al 2015). The challenge in larger mental health teams is the coordination ofcommunication and intervention efforts, to avoid fragmentation and duplicationof services. Therefore, a clear delineation of each mental health professional’srole is necessary, and communication of those roles to the families and medical
team becomes critical. Multidisciplinary coordination amongst the members ofthe mental health team can be facilitated through regular psychosocial rounds inwhich patients’ psychosocial care plans are devised collaboratively.
There is an emerging trend in some countries toward the use of telehealthfor mental health services for patients with cancer, which aims to reduce barriers
to care such as geographical isolation and limited resources (Walsh, 2018). For
example, in Australia, there is an on-line parent training program called “Cope,
Adapt, Survive: Life After Cancer” which introduces cognitive behavioral
interventions to improve the quality of life of families affected by pediatric cancer(Wakefield, 2015).

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IACAPAP Textbook of Child and Adolescent Mental Health

COMMON PSYCHOLOGICAL COMORBIDITIES
Anxiety and Procedural Anxiety
Children with cancer spend prolonged periods of time in hospital and theirnormal life is invariably disrupted. Understandably, parents are also anxious, and it
is not uncommon for children to recognize the increased anxiety of their primary
caregivers. Anxiety can manifest at any stage of treatment but is common, often
intense, at the beginning, and can at times be expressed as refusal of treatment orprocedures. The most common forms exhibited are:••••Procedural anxiety (fear of procedures)
Generalized anxiety disorder
Adjustment disorder, andMixed anxiety and depressive disorders.

Procedural anxiety can develop when a newly diagnosed child with cancer
has to undergo invasive procedures that are deeply unpleasant (e.g., blood tests,
bone marrow biopsy) and must endure frequent admissions to hospital. For apremorbidly anxious child this may lead to extreme fear of hospitals and medical
staff. Anticipating painful procedures, children may panic when they travel towards
the hospital. It is not uncommon for some children to cry inconsolably or freeze
during the procedures. In between procedures they may remain anxious and often
talk about the experience of undergoing tests.

Adjustment DisordersChildren and teens with cancer are usually able to comprehend theseriousness of the disease and as a consequence can become quite distressed by the
diagnosis. Additionally, they become upset about the loss of contact with peers,
disruptions in school attendance and their inability to participate in their usual
activities. Patients with adjustment disorder may display transient anxiety, mood
symptoms, or conduct problems not severe enough to qualify for a full diagnosis ofanxiety or major depression, for example. Irritability or sadness may worsen before
each hospital visit, and sleep and appetite may be disrupted for a few days. Theremay be subjective feelings of an inability to cope and plan ahead. It is assumed thatthese responses would not have emerged without the stress of cancer.

Depression
Some children undergoing treatment for cancer may present with social
withdrawal, low mood, irritability, crying spells, and psycho-motor retardation/
agitation suggestive of subsyndromal depression. Some young people may
experience depression following mutilating surgery, which may affect their ability
to participate in preferred activities or that change their physical appearance.
Depression may also emerge due to the loss of contact with peers or the inability
to go to school. In the absence of randomized controlled trials on depression inchildren with cancer, clinicians rely on the existing evidence base. A combinationof medication and psychological treatment is possibly the best option as there is noevidence for one treatment over another.
Cognitive behavioral techniques such as relaxation training and cognitive
restructuring are particularly effective for children. At times, cognitive behavioral
therapy for depression may not be feasible due to the physical and cognitive fatigue
Pediatric psycho-oncology I.6

Click on the image to viewa short video clip about
depression in children withcancer (3:11)

4

IACAPAP Textbook of Child and Adolescent Mental Healthassociated with treatment. Alternatively, family therapy may work particularly wellas it provides a scaffold around the child and helps to empower the immediatecaregivers. The role of medication in treating depression will be discussed later inthe chapter.

Agitation and Behavioral Difficulties
Corticosteroids are vital in the treatment of acute lymphoblastic leukemia,
which is the commonest malignancy in childhood. Children with leukemia
on corticosteroids can present with increased restlessness and agitation. The
effectiveness of this group of medications comes with a range of physical andpsychological side effects ranging from mild changes in mood and cognition to overt
psychotic symptoms (Drozdowicz & Bostwick, 2014). Psychological side effects
usually emerge within days of onset of treatment. Like in adults, mood symptoms(e.g., irritability, emotional lability, pressured speech) are the commonest, andare sometimes accompanied by psychotic symptoms (delusions, hallucinations).
Chronic treatment with corticosteroids may cause depressive symptoms, while
short-term therapy has a greater association with manic symptoms.
Children with leukemia rarely exhibit self-injurious behavior but they may
become moody and aggressive towards their caregivers. Acute agitation is quite
disruptive and often results in a pediatric psycho-oncology referral as nurses andoncologists find it difficult to manage such behaviors. A combination of behavioral
interventions and psychotropic medication may be necessary to manage thepsychological side effects.

Neurodevelopmental Disabilities
Children with cancer who have a previous diagnosis of autism spectrum
disorder or significant developmental delay may be a challenge to manage inthe pediatric oncology ward. These children can become distressed by evenroutine medical procedures, day to day changes in the hospital environment,
and their lack of familiarity with the adults attending to them. Children withneurodevelopmental disorders benefit from special accommodations (e.g., single
rooms, low stimulation, picture schedules) and often respond better to medicalcare delivered by a consistent group of nurses and doctors. Often, they struggle
with abstract thinking; therefore, medical education needs to be provided in amore concrete way, such as through drawings and photographs. These may help
their understanding better than verbal instructions. Most importantly, parents
must be actively engaged in the care of children with developmental disorders tolessen their distress.

The Life of a 12-year-old“I want to… I want to walkbut I am scared, what if I
fall? My parents worry all
the time. They usually holdmy hands when I walk.
Well, I am not like the otherkids and I’ll never again
be like them” muttered
Shantanu, a 12-yearold boy diagnosed withmedulloblastoma.
Following surgery, hestarted having difficulties
walking, often losing hisbalance. He had resumed
schooling recently.
However, he skippedschool often, preferring tostay at home. He showed
low mood, had lost interestin activities that he enjoyedearlier, had dwindling selfconfidence, and low selfesteem.
CBT was initiated toaddress these issues,
having six weekly sessions.
Liaison with school helped
Shantanu to experiencesome successes, reinforced
by rewards and praise.
Over time Shantanu
became less preoccupied
with his walking difficulties
and redirected his sparetime into hobbies that
required less physicalability, like learning to playchess.

Substance Misuse
Occasional experimentation with alcohol and substances is common inadolescents. Consequently, teenagers undergoing cancer treatment should be asked
routinely about substance use and misuse as that will have serious implications
during and following treatment. Once the young persons become cancer survivors,
during follow up appointments, they should be specifically asked about high-risk
behaviors, including substance misuse. This is particularly important as substancemisuse may be associated lack of attendance to appointments and screenings,
needed to test for recurrence. Misuse of substances also contributes to an overall

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IACAPAP Textbook of Child and Adolescent Mental Healthunhealthy life style (Verrill et al, 2000). Substance misuse needs to be addressed
during cancer care and at follow-up.

Body Image Problems
Some young people may develop concerns about their body image becauseof the impact of the disease or its treatment, such as loss of hair or loss of a limb
following amputation (Lee et al, 2015). Body image concerns may persist beyond
cure and become problematic at the point of their reintegration back to normal
life. Psychological treatment is the treatment of choice and may require sessions
over many months to restore self-confidence.

CHILDREN WITH BRAIN TUMORS
Brain tumors are the second most common cancers of childhood. The
location of primary brain tumors is infratentorial in about 60% of cases (gliomas
and medulloblastomas); the remaining are usually midline tumors (e.g., germ celltumors and craniopharyngiomas). Benign brain tumors are non-cancerous but canbe lethal because of their location in the brain, their ability to infiltrate locally, tocause inflammation, or because of the possibility of transforming into malignant.
Some tumors can recur after resection. At the time of diagnosis there may be acuteor chronically raised intracranial pressure, or infiltration or compression of CNS
areas. A presentation with change in behavior may happen but is rare.
Survival for children with brain tumors has improved, but many survivors
experience cognitive and psychological or psychiatric consequences, which may berelated to the tumor itself, the treatment (surgical, radiotherapy, chemotherapy), or
to other factors, like the psychological reaction of the child and family, related andenvironmental factors. In these cases, mental health clinicians should undertakea thorough assessment of the child’s psychological symptoms, they should know
the tumor location, staging, therapy, and the physical consequences of the tumor.

Neurocognitive Outcomes
Cognitive consequences typically emerge in the first few years and range frommild to severe. Risk factors for cognitive problems include tumor characteristics,
treatment variables (e.g., dose of radiation), and individual variables, such as age at
diagnosis (Stavinoha et al 2018; Palmer et al, 2003).
Some aspects of intelligence may be more affected than others (for a review,
see Ruiter, 2013). For example, attention, processing speed, and working memory(Reeves et al, 2006) may be affected more than other cognitive constructs and they
may have a high impact in the post-treatment adaptation of the child. Importantly,
studies have shown that the decline in processing speed and working memory may
be related to a failure to make gains over time rather than a true decline in function(Ris & Abbey 2010).
Family and environmental factors are also important but have been lessresearched. Carlson-Green et al (1995) reported that children from higher socioeconomic levels and children whose mothers had better coping strategies had better
intellectual outcomes. Arch et al (2012) reported that academic underachievement
was related to low levels of support to the family and high levels of conflict; theeffects of these two factors continued to be significant after controlling for age

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Table I.6.1 Psychosocial assessment of children with brain
tumourInitial evaluation

Post-treatment evaluation•

History of genetic disorders (e.g.,
neurofibromatosis, nevoid basal cell
carcinoma)

Impact of physical sequelae (e.g., lossof vision, hemiparesis, sensory deficits,
epilepsy, neuro-endocrine, speech
problems)•

Treatment received so far•

Significant life events•

Educational engagement•

Educational attainment and academic
strengths and difficulties•

Cognitive problems•

Psychological risk factors and resilience•

Psychological symptoms•

Premorbid development, psychosocial
history and functioning••
Family functioning, parental psychiatricdisorders and their coping with other life •eventsFamily functioning•

Availability of social support

Current social circumstances•

Social factors (e.g., poverty, housing)•Type of cancer: nature, location,
prognosis, and treatment received so far••

Changes in parenting style following
completion of treatmentof the child, radiation, and chemotherapy treatment. The Children’s Oncology
Group has developed assessment guidelines for children with brain tumors thatcan be accessed here.

Psychiatric OutcomesChildren with brain tumors have been found to be more socially isolated,
perceived by peers as being sick, easily fatigued, and absent from school more
often (Vannatta et al, 1998). Schulte et al (2018) report that half of the survivorsof brain tumors experience problems in social relationships and that social deficits
may worsen with time. Younger age at diagnosis predicts a poorer social outcome.
Posttraumatic stress symptoms, anxiety, emotional lability, and behavioral
problems have been described in patients with brain tumors (Bruce et al, 2011). A
review by Zyrianova et al (2016) found that 57% of children with brain tumors had
behavioral and psychological symptoms, especially internalizing problems. They
report that the location of the lesion is related to the neuropsychiatric outcome.
Supratentorial, right-sided cerebellar and vermis lesions having the poorest
outcomes. Lesions of the vermis of the cerebellum are associated with dysregulationof affect. Attention problems are common but it is unclear whether full ADHD
is more common than in the general population. Various specific syndromes
have been described, such us cerebellar mutism, posterior fossa syndrome, andcerebellar cognitive affective syndrome (Schahmann & Sherman, 1998; Levisohn
et al, 2000).

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IACAPAP Textbook of Child and Adolescent Mental HealthPrince Harry visiting Oxford children’s hospital
Photo Toby Melville/AP

TREATMENT REFUSAL
It is not unusual to receive urgent referrals from pediatric oncology teams
when young people suddenly refuse treatment (Brown & Slutzky, 2016). This is
to be considered as an emergency. Steps for managing this are given in the Table
I.6.2. From a medico-legal perspective, in most countries, the medical treatment ofchildren and teens requires consent from one of the parents. However, in reality theyoung person needs to cooperate in protracted treatments such as those for cancer.
It is extremely difficult to undertake a procedure like stem cell transplantation oradminister repeated cycles of chemotherapy against the will of the young person
even though, legally speaking, parental consent may be adequate and sufficient.
Hence, many pediatric oncology teams currently document assent from a young
person in addition to parental consent when they treat adolescent patients withcancer.

INDIVIDUAL PSYCHOLOGICAL TREATMENT
Common modalities of psychological therapy are behavioral management
and CBT. For very young children, behavioral strategies are often the most feasible.
However, for adolescents and school aged children, adapted models of CBT may
be used. Some commonly used techniques are:
•
•
•
•
•
•

Keeping thought diaries
Teaching progressive muscle relaxation
Deep breathing
Guided imagery
Behavioral activation, andPositive self-talk.

Research into interventions for social deficits is limited but one promising
study found improvements in self-reported social skills in brain tumor survivors
following social skills training, role play, and training in conflict resolution (Barrera

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Table I.6.2

Steps to address treatment refusal in young people
with cancer•

Establish rapport with the child. This is facilitated if the psycho-oncology team is familiar
with all the children seeking treatment for cancer in the hospital, following a shared caremodel of service delivery•

Discuss neutral, developmentally appropriate topics•

Assess the child’s mental state to ascertain if the refusal is related to depression, anxiety,or other problems. If that is the case, start treatment for the psychiatric condition•

Conduct a risk assessment•

Establish the context of treatment refusal. Evaluate if the young person has specific fears
associated with the treatment. A common reason is body image concerns associated withchemotherapy. Situational fear or anxiety may require a few days to alleviate•

Work with the pediatric oncology team to explain in a developmentally appropriate
language the nature of the treatment and its importance. Convey, without instilling undue
fear, that without the treatment the disease is likely to become worse•

Spend time discussing the treatment and addressing the fears

et al, 2018). A review of the management of executive functions’ problems inchildren with posterior fossa tumors found cognitive remediation to be helpful forsome aspects, although the evidence is limited (Wolfe et al, 2012). Conklin et al(2015) reported positive effects on cognition with a home delivered computerized
program.

LOOKING AFTER THE FAMILIES
Planning a Family Session
Once there is a referral to the pediatric psycho-oncology team, it is usefulto plan a family session. If there are siblings who are in school, a session should bearranged on a weekend or after school hours. The main message that needs to becommunicated to the family is that family, the professionals and the young person are
all on the same side, trying to deal with the cancer. Making such a symbolic divide
between the “cancer” and “everyone else,” often helps the professionals and thefamily bond as a team. The team should encourage the family to continue being aclose-knit unit, especially when the sick child is at home. The family needs to be
empowered while myths and irrational fears should be dispelled.

Formal Family Therapy
Some families may benefit from formal family therapy. The systemic andstructural schools of family therapy have been used in medical settings. Strategic
family therapy techniques are also useful with some of the very anxious families
who would prefer to bring the child to hospital for even innocuous reasons.
An example of the need to support a family would be when the child’s motherspends considerable time trying to feed him, while the child refuses chewing andPediatric psycho-oncology I.6

9IACAPAP Textbook of Child and Adolescent Mental Healthswallowing. The clinical team are worried that this may lead to infection and makea referral to pediatric psycho-oncology as they cannot persuade the mother to stop
force-feeding the child.

Making Time for Siblings
When the main caregiver within a family is intensely involved in looking
after a sick child, this may have an adverse impact on the other children. For
example, siblings can feel abandoned and grow angry and resentful. They may feel
upset at the loss of consistent contact with both their parent and sick sibling. All
children in the family, including those who are physically well, should be madeto feel important and loved. Clinicians working with families should encourage
siblings to continue with school and remind the caregivers to make time for thehealthy siblings. Looking after the emotional needs of the healthy siblings is often
overlooked and when done proactively often helps to bind the family together.

Pharmacological Treatment
Psychotropic medications can be useful in treating anxiety and mooddisorders. They can also have a significant role in the management of otherconditions like delirium and behavioral disturbances secondary to medication andgeneral medical illnesses. Conklin et al (2010) reported long term positive effects
on attention and social skills with carefully titrated doses of methylphenidate inbrain tumor survivors.
When using medication for depression, it is important to know about thesymptoms of the cancer, side effects of the chemotherapeutic agents, and possible
drug-drug interactions. Choice of antidepressant will be based on this information,with the goal to manage depressive symptoms, manage somatic complaints—likepain syndromes or peripheral neuropathy—and reduce, or at least not worsen, theside effects of chemotherapeutic agents. Common antidepressants used include
SSRIs, such as fluoxetine and escitalopram.

NEUROPSYCHOLOGICAL ASSESSMENT AND
MONITORING OF LATE EFFECTS

The Mother who Wanted
her Child to Eat Fruit
An 8-year-old diagnosed
with acute lymphocytic
leukemia was admitted
to the pediatric oncology
ward. Nurses noticed that
his mouth was often fullof food. The staff soon
discovered that his motherbelieved that eating
pomegranate would “helpto replenish the red blood
cells.” The child hated toeat pomegranate, kept
the food in his mouth, andavoided swallowing it.
The clinicians were soon
worried that poor oral
hygiene may make him
vulnerable to infections.
Nursing instructions had
not been accepted by theparent and a referral was
made to pediatric psychooncology.
After a psychosocial
assessment, family therapy
was offered to the family.
It was discovered that themother emphasized theimportance of eating as she
had very little control over
the other things that were
happening to her son. Overtime, the patient’s motherbecame less fixated on thechild’s diet and could focus
on the bigger picture.

Pediatric patients with all types of cancer should have a complete psychosocial
assessment covering psychiatric conditions, suicidal ideation, and adjustment, atthe time of initial diagnosis, during cancer treatment, and at follow-up. Assessmentof parental functioning may be needed as well..
Children treated for central nervous system malignancies and those withacute lymphoblastic leukemia who are treated with CNS directed therapies(e.g., high dose chemotherapy, radiation) are at increased risk for cognitive
impairment (Nathan, 2007; Annett, 2015). Indeed, an estimated 50-60% ofchildhood cancer survivors are at risk for cognitive impairment (Hewitt et al,2003). Children receiving CNS-directed therapies can suffer acute as well as longterm cognitive deficits (Nathan, 2007). Age and intensity of treatment predictlater neuropsychological functioning in children treated for acute lymphoblastic
leukemia. The areas of cognitive functioning that are most commonly affected
include: attention and concentration, memory, language, executive functions,sensory skills, visual-perceptual skills, and processing speed.

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Neurocognitive outcome studies suggest that even when treatment
has concluded, children and adolescents are at considerable risk for learning
disabilities, reduced educational attainment, compromised employment, andfunctional impairments in adaptive life-skills, due to enduring neuropsychologicaldeficits. Thus, practice parameters have recommended regular monitoringof neuropsychological functioning through parent and child interviews andstandardized assessment protocols (Annett, 2015)
Routine monitoring interviews can be conducted by a range of mental
health and health professionals because they are less reliant on training on
specific neuropsychological instruments. Monitoring can include patient andparent interviews about school performance, changes in attention, visual-motor
coordination, concentration, and memory. This type of monitoring should occur
regularly during the acute phase of treatment, with regular follow up inquiries
during the remaining treatment phases (Annett, 2015). These interviews can bereadily implemented in most clinics, including those that have limited access to
psychologists.
Patients identified through clinical interviews as having a decline infunctioning should then be referred for more comprehensive neuropsychologicaland educational evaluation. High risk patients such as those with pediatric brain
tumors and children receiving CNS-directed therapies should have a comprehensive
neuropsychological assessment after treatment has concluded, followed byreevaluation at 2-3 years after therapy (Annett, 2015). Annual academic testingshould be conducted by school personnel so that timely educational and vocational
interventions can be implemented. Cancer centers without a neuropsychologist
on staff should develop partnerships with psychologists within other hospitals orcommunity practices to facilitate patient access to timely evaluation.
There are very few studies regarding the types of remediation intervention
that should be implemented to address the neurocognitive deficits that emerge(Moore, 2013, Annett, 2015). The largest (161 survivors) randomized controlled
clinical trial of a cognitive remediation program resulted in modest improvements
in metacognitive strategies, improved attention, and academic abilities (Butler,2008).

APPROACHES TO PEDIATRIC PALLIATIVE CARE
Guidelines developed by the American Academy of Pediatrics (2013) and
the Psychosocial Standards of Care for Children with Cancer and Their Families(Weaver, 2015) emphasize the importance of routinely incorporating principles
of palliative care in pediatric cancer treatment. The World Health Organization(2018) defines pediatric palliative care as follows:••••

It encompasses the active total care of the child’s body, mind, andspirit, and giving support to the family
It begins when the illness is diagnosed and continues regardless ofwhether or not a child receives treatment directed at the disease
Health care providers must evaluate and alleviate the child’s physical,
psychological, and social distress.
Effective palliative care requires a broad multidisciplinary approachthat includes the family and makes use of available community
resources; it can be successfully implemented even if resources arelimited.

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The essential components of pediatric palliative care identified throughpublished studies, expert opinion, and practice parameters include (Himelstein,
2004; American Academy of Pediatrics, 2013; Weaver, 2015):
•
•
•
•
•
•
•

Establishing compassionate and honest communication between the
medical team, the child, and family
Providing ongoing assessment and intervention to lessen physical andpsychological suffering
Addressing the child’s and family’s spiritual needs
Engaging the child and family in advance care planning
Addressing the financial burdens experienced by the family
Providing support to siblings andProviding bereavement support to the family after the death of the child

Given the central importance of supporting children and families in adevelopmentally informed manner, members of a psycho-oncology team areparticularly well prepared to undertake an active role in the delivery of palliative
care services (Glazer et al, 2018).

Communication Strategies
Direct, honest and timely communication with children, adolescents,
and their families about the nature of the illness and prognosis is a cornerstoneof pediatric cancer care and palliative care (Weaver, 2015). The Psychosocial
Committee for the International Society of Pediatric Oncologists (Masera, 1997)
has recommended full disclosure to the child at a pace the child can accommodate,following a sharing conference with the parents. Some parents may have concerns
based on cultural, religious grounds or personal experiences with cancer about
informing their child about the severity of the illness and poor prognosis. Similarly,
family members may fear that providing such information to children will lead toan increase in anxiety or depression. These concerns will need to be addressed
directly by offering them psychoeducation about the potential psychologicaldistress that can result when children are given partial and incomplete information.
Specifically, children are keen observers of their family and caretakers and often
come to astute conclusions about the seriousness of their medical condition even if
they have not been informed of the specifics (Walsh, 2018; Glazer, 2018; Johnson,2017). Occasionally, a child may not want to know, and clearly communicatesthis to the treating team. In this situation, one needs to explore the reasons forsuch a preference.
Without direct and honest medical communication, children are likely todevelop increased levels of anxiety because of a lack of clear information about theircondition. Research has shown that adolescents in particular have a strong desire
for honest conversation about their medical condition and prognosis (Weaver,2015). A member of the mental health team can take the key role of helping
parents and the medical team come to an agreement about a staged delivery of
information to the child, as well as providing parents with direct guidance regarding
communication strategies with their child and the siblings.

ADVANCE CARE PLANNING AND DECISION MAKING
Palliative care discussions should provide families and youth with clear
information about options for end of life care, such as the type of treatment

Pediatric psycho-oncology I.6

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IACAPAP Textbook of Child and Adolescent Mental Healthinterventions that family and the child may choose to alleviate physical andpsychological distress, the utility or futility of life-sustaining interventions suchas mechanical ventilation and cardiac resuscitation, and family preferences aboutlocation of death. The significance of family centered advanced care planningwith children and adolescents has become increasingly recognized as an important
aspect of palliative care (Weaver, 2015).
A developmentally informed advance care planning workbook (Voicing My
CHOiCES) was developed by the National Cancer Institute to assist youth in
identifying their preferences for end of life care (Zadeh, 2015). This workbook
allows youth to put in writing their wishes regarding the persons they would liketo make healthcare decisions for them, the type of life support they would electto have, the spiritual or religious activities they would like incorporated into theircare, the location of death, and the type of funeral service they would prefer (e.g.,burial, cremation, organ donation). The psycho-oncology team can play a central
role in assisting families, children, and medical providers to have candid and directconversations about end of life preferences aligned with the family and child’s
cultural and spiritual values.

THE DEATH OF A CHILD IN THE HOSPITAL WARD

Advanced care planning
is informing the treating
professionals and loved
ones of the future medicalcare one would like toreceive if one becomesunable to explain one’s
wishes. Advanced careplanning promotes carethat is consistent with aperson’s goals, values,
beliefs and preferences

Supporting dying children is often a challenge for clinicians due to theintense emotions experienced by everyone involved. However, with advancedplanning and a cohesive approach, this clinical challenge can be addressed inan ethical and compassionate manner. The cornerstone is open and frequent
communication with the patient and family. It is also important to recognize
the impact of the death of a child on the other children in the ward and theirfamilies. We recommend that children’s cancer centers develop guidelines andTable I.6.3

Managing end of life care•

Understand the expectations of the patient and family. Primarily, this entails active
listening and will need to be done repeatedly during the entire journey•Help the pediatric oncology team to communicate with family members and thepatient. Communication should convey that everything that can be done has been
done•

Promote realistic hope. This does not mean about prolongation of life but about
expectations that there will be fewer distressing symptoms in the last few days•

Facilitate shared decision making. For example, by empowering the child and family
to participate in managing some of the symptoms such as pain, breathlessness etc.
This gives the family an opportunity to participate and understand the nature of thesituation more fully•

Visit the patient and the family regularly and be present at the time of death, if
possible.

•

If staff members are distressed with a particular death in the ward, it may be useful
to have a session with the staff•

Provide support to family members who request help after the normal bereavement
periodPediatric psycho-oncology I.6

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IACAPAP Textbook of Child and Adolescent Mental Health

Table I.6.4

Death of a child in the hospital•If death is imminent, allow close family members in the room with the child•

Ensure the room is not visually disturbing for the family members when they visit thepatient (e.g., by getting rid of spills, excess medical equipment)•

Bereavement is a private affair and repeated intrusions from professionals should
be avoided.

•

At least one member of the medical team should be present so that everyone feels
the dying child matters as much in death as in life•

Following death, the usual protocols of the hospital should be followed. A doctor
attending to the child should break the news to the family at an appropriate time, ifthey are not already there, in the room.

strategies to deal with such situations while respecting the bereaved family’s rightto confidentiality. The team should be mindful that even clinicians looking after
the child may need emotional support.

Supporting a Child When a Parent Is Dying of Cancer
Occasionally psycho-oncology clinicians are asked to evaluate and support
young people whose parent or sibling is the cancer patient. Helping a child cometo terms with the imminent death of a close family member is one of the mostdifficult tasks in psycho-oncology. There are specific child bereavement charities
who train professionals working with children going through grief.

Bereavement Support Following the Death of a Child
Bereavement care for parents and siblings for anticipatory grief and after
the death of a child has been strongly supported by the American Academy of
Pediatrics (2013) and in the Standards for Psychosocial Care (Lichtenthal et al,2015). Parents and siblings can experience prolonged grief, lasting from months toyears, following the death of a child; such bereavement reactions have been known
to lead to poor psychological outcomes. Bereaved parents are at increased riskfor depression, anxiety, and posttraumatic stress disorder (Lictenthal et al, 2015).
Families can also experience a sense of further loss and abandonment when they nolonger have ongoing contact with members of the medical and psychosocial teamwith whom they have often formed strong relationships.
Importantly, however, families who receive support during the anticipatory
grieving process have less complex grief following the death of a child (Donovan
et al, 2015), particularly if bereavement support is extended beyond the hospital
experience following the death. Studies have established the substantial psychosocial
benefits of bereavement services for families (Lichtenthal et al, 2015). A review
examining 30 hospital-based bereavement programs found that bereavement
services helped family members feel cared for and supported by staff, reduced thesense of isolation, and led to reports of improved coping and personal growth(Donovan et al, 2015).
Medical settings vary considerably in their capacity and resources to provide
bereavement services. Some have sufficient resources to have multidisciplinary
teams providing a broad range of services, such as attending funerals, sending cards

Pediatric psycho-oncology I.6

Click on the image above toview a short video clip about
managing grief in children(4:08)

14

IACAPAP Textbook of Child and Adolescent Mental Healthor emails, follow-up phone calls, connecting parents to other families who havelost a child, establishing group support programs, conduct home visits or hospitalbased family meetings during the first year following the loss, and establishing anannual day of remembrance for all families to attend. Some oncology programs
conduct formal clinical assessments of parents’ and siblings’ coping in order tomake referrals for follow-up mental health support if needed. Yet, others have very
limited resources to offer even minimal follow-up inquiries with families.
Practice guidelines (American Academy of Pediatrics, 2013; Lichtenthal etal, 2015) strongly recommend that bereavement care be provided for anticipatory
grief and continue after the death of the child. A member of the health care teamshould contact the family at least once following the death of a child, to let thefamily know that their child and them are not forgotten, as well as to assess thefamily’s emotional, psychological, spiritual, and practical needs. Additionally, amember of the psychosocial team should work to identify families that are at riskof poor psychological outcomes and refer them to social or mental health services.
Importantly, each family has a unique manner of grieving, therefore, bereavement
programs should be flexible to individualize the type of support offered (Donovan,2015).
Child mental health professionals can assume a leadership role in pediatricpalliative care teams by promoting interdisciplinary methods of evaluating childand family coping along the continuum of care, including the bereavement period.
Mental health providers can also assist in creating a network of community-based
resources to which families can be referred for ongoing support.
Importantly, the American Academy of Pediatrics (2013) has recommended
that members of the health care team receive ongoing psychological, ethical, andspiritual support to assist them with the stress of caring for children with lifelimiting diseases. Within the hospital setting, support for all staff can be provided
through peer support groups, group debriefing, psychological and spiritual
counseling, and educational programs tailored for the health care team. Mental
health professionals can develop psychoeducational programs and a culture of
support for the hospital staff who experience the psychological challenges of caring
for seriously ill children.

Ongoing Mental Health Interventions Following the Death of a Child
Some families request ongoing mental health support for siblings
experiencing bereavement because they are at a loss as to how to support thesurviving children. It is important to inform them that most children are resilient;
this helps them overcome adversity and loss if supported by friends and family,
without professional help. Parents often benefit from reassurance that thesymptoms exhibited by their children are part of the normal grieving process
and will likely resolve gradually. If there are symptoms of pathological grief (e.g.,absence of grief or very severe and prolonged grief ) then professional help may
be advisable. Mental health intervention may be necessary when there is parental
psychopathology or psychosocial adversity that affects the adults’ ability to support
surviving children.

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IACAPAP Textbook of Child and Adolescent Mental Health

CONCLUSION
Pediatric psycho-oncology is a challenging yet rewarding field. Mental healthclinicians entrusted with working with children and young people with cancer
need to be well versed with the unique strategies and methods of working withchildren and have a clear understanding of the nuances of working with children
with specific types of cancer. With increased survival, pediatric psycho-oncology
is likely to become increasingly important in the overall planning of cancer carein children.

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