Psychological Concerns in Children with Chronic

Medical Conditions

by Sharon Arffa, PhD, MPPM

December 2017

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A medical condition that

• lasts three months or more,

• affects a child’s normal activities (attending school regularly, doing

school work, or doing usual childhood activities)

• requires frequent hospitalizations, home health care, and/or

extensive medical care Mokkink et al. 2008

Most significant chronic illnesses that affect children and adolescents

are characterized by an acute phase surrounding the diagnosis of

the illness followed by prolonged stress associated with extended

treatment and recovery

chronic illness

Prevalence

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Epidemiologic studies suggest that as many as 1 out of 4

children in the U.S., or 15 to 18 million children age 17 years

and younger, suffer from a chronic health problem (Van

Cleave et al. 2010; van der Lee et al. 2007).

The prevalence of specific diseases and conditions ranges

widely

in the U.S. alone

• over 13,000 children are diagnosed with cancer each year;

• 13,000 children are diagnosed with type 1 diabetes annually;

(type 2 is increasing due to the obesity explosion)

• 9 million children suffer from asthma;

• 72,000 Americans (all ages) live with sickle cell disease;

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Meningitis: The attack rate per year in the United States is

reported at 0.6-4 cases per 100,000 population.

Stroke Children to age 19:

• Incidence rate: 2.3/100,000

• 1.2 ischemic, 1.1 hemorrhagic (ICH 2x > SAH)

TBI incidence rates

• ranged from 180 to 295 per 100,000

males > females

the peak age was 15-19

motor vehicle accident (mva) was the most frequent cause

Health conditions with Neurological consequences

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Epilepsy-there are 470,000 children with epilepsy. According

to the latest estimates, about 0.6% of children aged 0-17 years

have active epilepsy

Spina bifida-about 1500 to 2000 babies are born each year in

the US with spina bifida

Cerebral palsy- caused by damage to the parts of the brain that

control movement, balance and posture. Most often the

problems occur during pregnancy; however, they may also

occur during childbirth, or shortly after birth. it occurs in about

2.1 per 1000 live births, is more common in males and with

prematurity. As of 2005, advances in care of pregnant mothers

and their babies has not resulted in a noticeable decrease in

CP

Health conditions with Neurological consequences

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Muscular Dystrophy-Duchenne and Becker muscular

dystrophy (DBMD) is 1 in every 7,250 males aged 5 – 24

years

Health conditions with Neurological consequences

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Neurodegenerative disorders (dementia)

The neurodegenerative diseases of infancy and childhood include

disorders in which there is progressive loss of neurological function

due to structural abnormalities of the central nervous system. Well

over six hundred disorders, many of which are rarely seen, can be

included in this category

The 6 most-encountered diagnoses are: subacute sclerosing

panencephalitis; neuronal ceroid lipofuscinosis; tuberous sclerosis

with degeneration; West disease, or idiopathic degenerative

encephalopathy associated with infantile spasms; Werdnig-

Hoffmann disease, and hereditary spastic paraplegia

Health conditions with Neurological consequences

CLASSIFICATION OF CHILDHOOD

DEMENTIAS : Metabolic Conditions

biotinidase deficiency

fatty acid metabolism disorders

lysosomal storage diseases

mitochondrial

neuro-metabolic

urea cycle conditions

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Because they are rare, they are poorly researched

They are often hard to diagnose—for example, Diagnosis of

mitochondrial disease can be invasive, expensive, time-

consuming, and labor-intensive. even after a complete

evaluation, the doctor might not be able to confirm a specific

diagnosis. More invasive tests, such as a skin or muscle

biopsy, might be performed

There are often multiple forms of the same disorder, such as

early, juvenile or late onset. This affects the severity, course,

and outcome

Some are treatable with enzyme replacement therapy or

dietary control; many are not treatable

Neurodegenerative disorders

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The 4 most prevalent chronic health conditions in children with

intellectual disability were epilepsy (22.0/100), cerebral palsy

(19.8/100), Down syndrome (11.0/100), and autistic disorder

(10.1/100).

The reported prevalence rates of chronic health conditions in this

population was much higher than in the general population.

Neuropsychological deficits are most common in conditions with

a neurological component like TBI, CP, neurodegenerative

disorders, but are also present in other health conditions such as

cancer survivors (worse in brain tumor cases but also present

due to toxic effects of radiation and chemotherapy), diabetes,

severe asthma etc.

Chronic health conditions, intellectual disability, and other learning issues

Psychological Factors

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Parents often experience an array of emotions.

Immediately after the diagnosis, many mothers and fathers

enter a mourning period, grieving over the "loss" of their

healthy child.

They must cope with the shock and the pain and try to accept

the new reality.

Parents may deny this reality

Eventually, many but not all parents find ways to accept their

child's illness

They may periodically feel sad, resentful, anxious, and angry.

Parental Reactions

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Anger Achievement

Anxiety Closeness

Embarrassment Joy

Frustration Love

Grief Mastery

Guilt Pride

Isolation Self-Confidence

Powerlessness Self-Esteem

Resentment Strength

Sadness Usefulness

Positive and negative feelings parents might have

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Many parents find it to be very difficult to discipline their

chronically ill child.

“Hell on wheels”

• a premie may be on the brink of death and suffer with multiple life-

threatening illnesses for several years

• Many recover and do well if they survive this period

• They have never had any discipline

• Often every wish has been indulged

• They become demanding, controlling, and entitled

In order for parents to apply behavioral interventions, they first

have to deal with the guilt, grief

Discipline

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Often parents do not let children with illnesses explore,

experiment, or problem solve.

They are likely to be overly dependent on adults due to missing

this crucial developmental task

Immaturity and Dependency

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Guilt that they are not sick ("Why him and not me?")

Wonder whether they might have caused their sibling's illness

Anxious about becoming sick themselves

Jealous and wish could become the center of the family's

attention

Angry if they are asked to assume more household chores than

their sibling

Guilty when they resent the additional responsibility they are

tasked with

Embarrassed or even angry when strangers stare at their

brother or sister in a wheelchair, or when other children tease

their sibling because he or she looks different

How Siblings Might Feel:

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How a family responds to chronic illness varies based on the

age and developmental stage of the ill individual, the strength

and coping mechanisms of the family, and the family life-cycle

stage.

More adaptive family relationships and parental psychological

adjustment were associated with positive psychological

adjustment while less adaptive family relationships (e.g.,

greater conflict and maternal psychological distress)

consistently predicted problematic adjustment.

In recovery from TBI, family adaptation and resourcefulness

was the biggest predictor of good outcome

Family concerns

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Having a child with a chronic illness has a negative impact on

the marital relationship, including lack of time with the spouse,

communication problems, higher divorce rates, increased

relationship conflict, increased role strain, and decreased

relationship satisfaction.

THERE IS ALWAYS A “BUT”: other studies found no effects,

and others have found positive effects including increased

closeness, greater cohesion and increased support.

Often, the primary financial supporter feels the strain of medical

expenses, especially when health insurance is insufficient

Marital stress

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The person who is chronically ill may feel guilty about the

demands his or her illness makes on the family.

He or she may resent the change in roles and responsibilities

caused by the limitations imposed by the illness.

He or she must deal with the threat to his or her autonomy and

the need to depend on healthy family members.

In addition, the child must grieve the loss of a normal future and

aspirations (marriage, family, career, long life maybe even

adulthood).

Other identity issues arise with disfigurement, and physical

disability, even with hair loss

The child

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Just begin to develop trust and an overall sense of

security. They generally have very little understanding of their

illness.

They experience pain, restriction of motion, and separation

from parents as challenges to developing trust and security.

Parents can help by being present for painful procedures,

staying with their children (when possible) during

hospitalizations, and holding, soothing, and interacting with

their baby as much as possible.

Infants and Toddlers

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Want to develop a sense of independence. They may

understand what it means to get sick, but not understand the

cause and effect nature of illness. I.E, they may believe that

throwing up causes them to get sick, rather than the other way

around. Being in the hospital or adjusting to medication

schedules can challenge the child’s developing

independence. The child may try to counter lack of control over

their world by challenging limits set by parents.

Parents can help by being firm with things the child does not

have a choice over but by offering choices over flexible aspects

of treatment. (For example, “Which to you want to take first,

the pink medicine or the purple?” or “Do you want to sit on my

lap while you have your blood drawn, or in the chair with me

holding your hand?”) Parents can help their preschool child be

resilient in times of stress.

Preschool Children

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Want to develop mastery over their environment. They might

describe reasons for illness, but these may not be entirely

logical. Children this age often have “magical thinking.” They

may believe they caused illness by thinking bad thoughts, by

hitting their brother, or by not eating their vegetables.

Children also sense that they are different from their peers.

Parents can help by allowing children to help in management of

their illness (with close adult supervision). They should also

reassure their children that the illness is not their fault. Parents

can help elementary school kids develop resilience in the face

of a chronic illness.

Early School-aged Children

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They are more capable of understanding their illness and its

treatment

They may feel left out when they miss school or activities with

their peers.

Parents may feel the need to protect their children by restricting

them from activities with other children. This can interfere with

the child’s independence and sense of mastery.

To the extent allowed by the child’s doctors, parents should

help the child to participate in school or other activities.

Older School-aged Children

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Communicate with each other: communicate constructively

about the illness and treatment. They need to talk openly about

the chronic illness, but not allow talk of the illness to dominate

the family members’ daily lives.

Support each other: Different people want different types of

support: Some people want practical help, others want to be

listened to, and still others want to know that the other family

members think they are strong enough or capable enough to

handle things. More support is not necessarily better. Second,

family members need to learn to ask for the kind of help or

support that is wanted.

Increase and lean on social support. It is well-known that

having a social support network outside of the family benefits

all members of the family, both physically and psychologically.

Effective Ways for the Whole Family to Cope

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Take care of family members’ physical and psychological

health. Teach relaxation or mediation techniques, establish

exercise routines regularly, and help build in alone time and

time away.

Find the new normal: The goal is to move from crisis

management to incorporating the illness into the family’s daily

lives. Life will never be exactly the same as it was before. They

should struggle to find ways to understand and make meaning

of the experience.

Effective Ways for the Whole Family to Cope

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When the chronic illness colors every aspect of a family’s

interactions.

When partners have different coping strategies and cannot find

common ground regarding the demands of the illness.

When one or more family members routinely withdraws into

silence, substance abuse, depression, or acting out.

When one or more family members routinely takes on a

reactive, anxiety-driven, tell-all communicative style of coping.

When a family is still stuck in the “crisis phase” and not the

ongoing process of adapting to a “new normal.”

Signs of poor family adaptation

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Family therapy is most helpful in the beginning stages of the

child’s illness

Child therapy can help children or adolescents express and

learn to cope with their emotions (fear, anger, sadness)

Group therapy or support groups can help by establishing a

social network

Children, parents, and other family members can develop frank

psychiatric conditions, or previous conditions can be

exacerbated. Most common reactions are Depression and

other mood disorders, anxiety disorders, especially post

traumatic stress disorder

Therapy

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Intrusive memories

Vivid dreams and nightmares

Flashbacks

Hypervigilance

Increased startle response

Mental avoidance

Behavioral avoidance

Emotional numbness

Social withdrawal

Sleep disturbance

Shame and guilt

Irritability and anger

Grief

Shakiness, trembling, muscular aches, GI symptoms

PTSD

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Only child with Duchene Muscular dystrophy

Had a rather refractory type

I followed from the time he began having issues such as

holding a fork to a pencil to the time he was in a wheel chair

Behavioral issues in the school-poor frustration tolerance, melt

downs, aggression, bad language

Family issues-parents struggled alternatively with grief and

hope. They wanted him to have as much a “normal” childhood

as possible.

Child issues—lack of muscle control was countered through his

feisty, aggressive style

Identify the issues, and if behavioral interventions do not work,

you have to isolate the reason why.

Henry

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Normal child until developing leukemia at age 9

4 years of treatment wit multiple recurrences ensued. At age

15, he was considered a survivor

He could not function at his job as a server at age 19 as he was

constantly forgetting orders and mixing up trays

Neuropsychological testing found a severe memory disorder

and executive function problems.

Pulled in resources from OVR and cognitive rehabilitation to

create job skills and a job placement where he could be

successful

There was therapy needed to help Ryan and his mother cope

with the losses and grief. This was necessary before they

moved on

Ryan

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13 year old with Cystic Fibrosis

Single mother struggling with multiple children, financial issues, and

her own mental health issues

Fragile health, often hospitalized and missing school

Noncompliant with school work

Engaging in high risk activities when mother was not present

(substance use, wandering the neighborhood)

Jamie was depressed. He did not think he had a future and was

unwilling to take precautions to control his medical conditions as he

felt it was futile.

There was no structure to the family life

Plan: depression treatment, therapy to deal with identity issues,

increased structure in the home; social supports

Jamie

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16 year old who took 40 Tylenol in a nonlethal suicidal gesture

She suffered liver failure and the only thing that could help is a liver

transplant

Acutely, she had to deal with full knowledge she might die and that

she caused this

Family members were angry with her and unhelpful

Acute therapy was necessary to help her deal with her angst,

anxiety (medication was not an option due to her bad liver), guilt,

and identity issues. family therapy was necessary to help the family

deal with the outcome and begin to serve as a resource to Janine

Long term issues included family communication, coping with a new

chronic condition, and resolving feelings of guilt and shame

Janine

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8 year old with epilepsy

Mother is deceased. She lived with father who was marginally

functional. He kept a low level job, hygiene was poor, and he had

many health problems that were poorly treated. He struggled to meet

Jilly’s medical and basic needs such as food and clothing let alone

her emotional needs.

Jilly began having multiple seizures at school. Medication changes

did not help, ketogenic diet did not help.

Pursued evaluation for pseudo-seizures (common to have this in

epilepsy)

Increased social services to assist father; brought in extended family

resources

Worked with school to remove secondary gain

Jilly

PTSD and post traumatic growth

Recent research from the positive psychology movement out of

Penn confirms the presence of post-traumatic GROWTH, a

process where people actually grow as a response to undergoing

severe trauma’s. As many as 80% of trauma survivors had at

least one positive outcome

• experience closer relationships

• an increased sense of connection to others who suffer

• increased sense of one’s own strength

• a greater appreciation for life in general

• a deepening of their spiritual lives

• sense that new opportunities have emerged

• a greater appreciation for life in general

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0

10

20

30

40

50

60

70

80

ptsd score PTG score

1 week 3 weeks 5 weeks 9 weeks 11 weeks 13 weeks 15 weeks

Decrease in PTSD symptoms over time

Percentage Agreeing with Positive Change

I don’t take life for granted anymore 94%

I value my relationships much more now 91%

I feel more experienced about life not 83%

I live every day to the fullest 71%

I look upon each day as a bonus 77%

I’m a more understanding and tolerant person now 71%

I no longer take people or things for granted 91%

I value other people more now 88%

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Posttraumatic growth means going beyond previous levels of functioning

Three trajectories of adjustment

Level

Of

Functioning g

growth

recovery

impairment

time

Can you promote resiliency?

Growth is the process of constructing a new narrative

understanding of how adversity has shaped and transformed

us

Psychotherapists provide people with a safe environment to tell

and retell their story

We cannot force people to grow

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Thank you