Psychological Concerns in Children with Chronic Medical Conditions · Psychological Concerns in...
Transcript of Psychological Concerns in Children with Chronic Medical Conditions · Psychological Concerns in...
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