discussion #13 disease

ASSESSMENT & TREATMENT OF PEDIATRIC CHRONIC ILLNESS & PAIN

¡  Pediatric psychology is a field of science and practice that addressed the range of physical and psychological development, health, and illness issues affecting children, adolescents, and their families.

¡  Practitioners in this field explore the relationship among psychological and physical health and the welfare of children and adolescents within a developmental perspective.

¡  Using a biopsychosocial approach, clinicians working in pediatric psychology consider the contexts of family, caregivers, health care systems, schools, peers, and community in helping children and adolescents cope with chronic medical conditions, promote health, and prevent illness and injury.

PEDIATRIC PSYCHOLOGY

¡  Clinicians working in the field of pediatric psychology generally work in the following settings: §  Inpatient medical center units for disease and illness

§  Consultation liaison services for acute and chronic illness units such as neonatal/pediatric intensive care (NICU/PICU), hematology/oncology and bur ns

§  Medical outpatient clinics §  Private pediatric practices, consultation/liaison services to general pediatrics,

endocrinology, plastic surgery, gastrointestinal

§  Outpatient and primary care clinics for emotional and behavioral problems

§  Specialty facilities, clinics, and centers §  Physical rehabilitation centers, child study or developmental

disabilities centers, university-affiliated facilities §  Camps or groups

§  Summer or weekend camps for children with chronic illnesses (i.e., asthma, diabetes, sickle cell disease, spina bifida); parenting groups for children with chronic illnesses

CLINICAL SETTINGS

¡  S o m e o f t h e c l i n i c a l a c t i v i t i e s p r o v i d e d i n t h e s e s e r v i c e s e t t i n g s i n c l u d e : §  Psychological services for problems related to pediatric health conditions

§  Adjustment to disease management, management of disease symptoms, adherence to treatment regimens, coping with procedural pain or invasive procedures, treatments for medical problems (i.e., encopresis, tracheostomy)

§  Psychological interventions for mental health problems and issues that occur in medical units as a result of the medical condition §  Negative behaviors resulting from extended hospitalization, grief and

bereavement, school reintegration, etc. §  General mental health services for behavior problems referred to and

referred within pediatric settings §  Assessment of neurocognitive functioning and the impact of chronic illness

on neurodevelopmental trajectories; assessment, training, and school interventions for children including those with mental retardation and developmental disabilities

§  Education and consultation for pediatricians and family physicians in training

§  Public health and public policy activities

CLINICAL SERVICES

¡  Adherence to pediatric regimens is a major health concer n and a complex issue

¡  Although providers may view complete adherence as desirable, it is important to adopt a realistic family perspective in trying to understand pediatric health behaviors

¡  This involves giving up the notion that “doctor knows best” and that adaptive patient behavior is solely complying with all medical recommendations (regardless of their effectiveness, cost, inconvenience, or discomfort)

¡  Traditionally, the extent to which a patient (or their parents) followed the advice of medical professionals was referred to as compliance

¡  The ter m adherence is now being used with more frequency as a means of describing the nature of a patient’s response to a medical regimen

ADHERENCE TO PEDIATRIC REGIMENS

¡  Current definitions of adherence recognize that adherence can occur on a continuum and that multiple factors in a person’s daily life can influence health- related behaviors

¡  Current practices acknowledge the responsibility of health care providers to offer patients understandable and feasible health management goals before they can expect patients to incorporate them into their routines

¡  The current definition of adherence recognizes the importance of both the health care provider’s and patients’ contributions to the decision-making process and the success of the recommended medical care

ADHERENCE ( C O N T I N U E D )

Illness Factors

Family Factors

Treatme nt

Factors

Health Care

System Factors

Individu al

Charact eristics

Social/ Cultural Factors

INFLUENTIAL FACTORS IN ADHERENCE

B

Build Rapport

*Conduct interactions in a warm and empathetic manner

*Talk about non-medical topics

*Engage patient in developmentally appropriate, personalized conversation

*Note important family events to ask about on return visits

Provide Information

*Avoid medical jargon

*Discuss advantages and disadvantages of treatment

*Be realistic about adherence expectations

*Repeat instructions if necessary

*Have a parents and/or patients repeat instructions

*Alert parents/patients prior to given them an

Assess Patient & Family Characteristics

*Investigate learning styles and barriers (e.g., illiteracy)

*Investigate emotional functioning and family stressors that may impact adherence

*Ask about parent/ patient understanding, worries, and expectations about the illness and treatment

*If medication is involved, explore beliefs and concerns about medication

Problem Solve

*Approach adherence difficulties with a supportive, non-judgmental attitude

*Recognize how difficult adherence can be for families

*Assist family in identifying potential barriers to adherence

*Generate a list of solutions for the problem

*Teach the family how to anticipate future problems and solutions

*Focus on patient’s personal best for adherence vs. ideal care; gradually increase goals

*Discuss the roles of each family member ins carry out the medical regimen

STRATEGIES FOR IMPROVING ADHERENCE

Adapted from Treaments that Work with Children by Edward R. Christophersen & Susan L. Mortweet

¡  Prema turu ty ¡  D e v e l o p m e n t a l I s s u e s ¡  Pediatri c fe e d in g p ro blems ¡  F a i l u re t o t h r i v e ¡  Autism ¡  M e n t a l R e t a rd a t i o n ¡  Pediatri c Ob e s ity ¡  C y s t i c F i b ro s i s ¡  D i a b e t e s ¡  B l ood D i s ord e rs

§  (e.g., Sickle cell, hemophilia) ¡  C a n c e r ¡  R e c u r re n t h e a d a c h e /

m i g r a i n e

¡  H I V / A I D S ¡  B ra i n & s p i n a l c ord i n j u ry ¡  J u v e n i l e r h e u m a t o i d

a r t h r i t i s ¡  C a rd i o v a s c u l a r D i s e a s e ¡  P e di at ri c B ur ns ¡  G a s t ro i n t e s t i n a l D i s o rd e r s

§  Recurrent abdominal pain, inflammatory bowel disease, rumination disorder, cyclic vomiting

¡  E l i m i n a t i o n D i s o rd e r s §  Enuresis & Encopresis

¡  P e di at ri c Sl e e p diso rder s ¡  B e h a v i or Prob l e m s i n a

p e d i a t r i c c o n t e x t

C O M M O N P E D I AT R I C M E D I C A L C O N D I T I O N S R E Q U I R I N G P S Y C H O L O G I C A L I N T E RV E N T I O N S

¡  Pain is a subjective experience ¡  Pain behavior generally represents an interaction of

psychosocial factors and physical illness to deter mine an individual’s pain experience

¡  It is the clinician’s role to understand the varying degrees of this interaction in order to develop treatments designed to relieve, remove, or reduce a patient’s suffering

¡  Pain can be classified as: §  Nociceptive: Viceral and somatic §  Neuropathic/Neuralgia §  Exacerbated by sympathetic activity (complex regional pain

syndrome)

PEDIATRIC PAIN

¡  Between 25% and 44% of children and adolescents report transient somatic complaints

¡  Approximately 10% to 20% of children younger than 10 years report recurrent headaches, and the frequency of migraines increases significantly after puberty, particularly in adolescent girls

¡  Approximately 10% to 25% of school-age children and adolescents report recurrent abdominal pain

¡  Symptoms of pain increase significantly in children with underlying physical conditions

¡  Approximately 25% of pediatric cancer patients report daily pain episodes

¡  Pain is a common symptom in 60% of children with HIV

EPIDEMIOLOGY OF PEDIATRIC PAIN

¡  T o d d l e r y e a r s - 6 y e a r s o f a g e §  Children are generally confused about the aspects of pain and may

view pain as a punishment for the real or imagined transgression of rules. They have a tendency towards magical thinking and may develop idiosyncratic explanations for the pain. They are not able to self-generate coping strategies and tend to rely on their environment (i.e., support from adults)

¡  A g e 7 t o 1 0 y e a r s §  Children have more abilities for measurement, assessment, and

seriation of pain symptoms. Their understanding broadens to include awareness of associated negative affects. There is an increase in the ability for logical thought processes but they may still attribute pain to punishment. Pain that limits school and physical activities may have particularly adverse effects at this stage.

¡  A g e 1 1 y e a r s t h r o u g h A d o l e s c e n c e §  Adolescents develop an increased ability for abstract thought and

instrospection and become more aware of the psychological aspects of pain and its protective function. They may be able to differentiate the emotional aspects of pain and make use of behavioral interventions to reduce pain symptoms. Adolescent’s greater ability to focus on future events may lead to greater worries and concer ns about the recurrence of pain and disease.

PAIN PERCEPTION IN A DEVELOPMENTAL CONTEXT

C h i l d f a c t o r s ¡  A g e

§  Yo u n g e r c h i l d re n m a y d e m o n s t r a t e g re a t e r o v e r t b e h a v i o r a l d i s t re s s ( e . g . , s c re a m i n g , c r y i n g ) a n d l e s s p h y s i c a l c o n t ro l

§  Adolescents may suppress pa i n b e h a v i o r s o r u n d e r re p o r t p a i n i n t e n s i t y

§  S u b t l e o b s e r v a t i o n s i n d i c a t e d n o d i f f e re n c e s b e t w e e n p a i n re s p o n s e s i n older and younger chi l dren dur ing a b o n e m a r ro w a s p i r a t i o n p ro c e d u re

¡  G e n d e r §  Adolescent girls tend to ha v e low er

t o l e r a n c e a n d h i g h e r f re q u e n c y

¡  T e m p e r a m e n t §  Preliminary data suggests

t e m p e r a m e n t i n f l u e n c e s p a i n e x p e r i e n c e s .

§  Te m p e r a m e n t m a y i n t e r a c t w i t h p a re n t a l f a c t o r s

¡  P r e v i o u s E x p e r i e n c e w i t h P a i n §  This may interplay w i t h developm ental

c h a r a c t e r i s t i c s t o d e t e r m i n e h o w a c h i l d w i l l e x p e r i e n c e s f u t u re p a i n , b u t t h e re l a t i o n s h i p b e t w e e n p a s t a n d re c e n t p a i n f u l e x p e r i e n c e s i s c o m p l i c a t e d .

E n v i r o n m e n t a l F a c t o r s

¡  P a r e n t s ’ R e s p o n s e t o t h e p a i n f u l s i t u a t i o n §  P arents c an have a direct a nd

i m m e d i a t e i m p a c t o n t h e i r c h i l d ’ s re s p o n s e t o a c u t e a n d c h ro n i c p a i n

§  C h i l d re n ’ s d i s t re s s i s g re a t e r w h e n p a re n t s re a s s u re , c r i t i c i z e , o r a p o l o g i z e t h a n w h e n t h e y d i s t r a c t t h e c h i l d .

  ¡  P a r e n t s ’ R e s p o n s e t o c h r o n i c p a i n

s i t u a t i o n s §  P arents may encour age a nd ma intain

a c h i l d ’ s e x p re s s i o n o f p a i n b y p ro v i d i n g p o s i t i v e c o n s e q u e n c e s f o r t h e s e e x p re s s i o n s a n d / o r d i s c o u r a g i n g o r failing to rein force the child’s use o f a ppropri ate coping st r ategi es.

§  M o d e l i n g o f i n a p p ro p r i a t e c o p i n g s k i l l s b y o t h e r f a m i l y m e m b e r s s u f f e r i n g f ro m p a i n c a n l e a d c h i l d re n t o c o d e i n e f f e c t i v e l y a n d re c e i v e p o s i t i v e - re i n f o rc e m e n t f o r p a i n - re l a t e d b e h a v i o r s .

CONTRIBUTING FACTORS

¡  Pain is measured by self-report, observation, or physiological measures

¡  It is critical to use measures that are developmentally appropriate for the assessment of pain §  Self-Report

§  Valid for children as young as 4 years §  Usually combined with parent observations §  Limited in discriminating between intensity and duration and

between the physical and emotional components of pain

§  Key to ask about physical sensations (e.g., heat bur ning, skin sensitivity) §  Verbal Descriptor scale §  Numeric Rating Scale §  Visual Analog Scale

MEASUREMENT OF PAIN

¡  Characteristics of Pain §  Location/radiation; quality; intensity; duration and frequency

(e.g., acute, chronic, during procedures); level of distress and assessment of its relationship with severity of underlying etiology

¡  Precipitating or Exacerbating Factors §  Eating, motion, menstrual cycle, stress, bright lights, lack of

sleep/fatigue ¡  Alleviating Factors

§  Distraction, vomiting, touch, bathing, heat, cold ¡  Use and Efficacy of past and current interventions

§  Phar macological: Types of medications, schedule, adherence, efficacy, side effects

§  Nonphar macological: Physical therapy, biofeedback, guided imagery, hypnosis, distraction

BIOPSYCHOSOCIAL ASSESSMENT

¡  Impact of Pain §  Emotional (e.g., depression, anxiety, PTSD) §  Family (e.g., schedule disruption, impact on marital relationship,

impact on siblings, distraction from family conflict) §  Social and peer relationships §  Academic (e.g., absenteeism, placement in home teaching)

¡  Family beliefs regarding pain §  Beliefs in a single, undiagnosed primary medical cause for the

pain, belief in role of environmental triggers, belief in role of psychological factors, beliefs regarding pain control

¡  Family Medical History §  Family hx of unexplained somatic symptoms; pattern of

reinforcement of illness behavior in the family ¡  Reinforcement of Pain Behaviors

§  Reinforcement by parents; increased attention or sympathy from family and friends; increased attention from medical providers; avoidance of school, social, or athletic stressor; secondary gain

BIOPSYCHOSOCIAL ASSESSMENT ( C O N T I N U E D )

¡  E d u c a t i o n ¡  P h y s i c a l T h e r a p y ¡  B i o f e e d b a c k ¡  Tr a n s c u t a n e o u s E l e c t r i c a l N e r v e S t i m u l a t i o n ( T E N S ) ¡  C o g n i t i v e B e h a v i o r a l T h e r a p y

§  Guided imagery and hypnosis §  Behavior modification

¡  I n d i v i d u a l a n d F a m i l y P s y c h o t h e r a p y ¡  P h a r m a c o l o g i c a l M a n a g e m e n t

§  Nonsteroidal anti-inflammatory drugs (NSAIDs) §  Acetaminophen §  Opiods (Narcotics) §  Antidepressants §  Anticonvulsants §  Membrane Stabilizers §  Clonidine §  Psychostimulants §  Antipsychotic agents §  Anxiolytic agents §  Topical Anesthetics

SUMMARY OF INTERVENTIONS

¡  Unfortunately, research suggests that inadequate pain treatment in children sometimes takes place. It has been found that medical personnel and parents sometimes underestimate, and consequently undertreat, the pain experiences of children. Reasons why inadequate pain management occur include, but are not limited to: inaccurate pain assessment by adults, inadequate reassessment of pain control, misconceptions about children’s experience of pain (e.g. infants do not feel pain), poor communication between members of treatment team, overestimation of the medication’s benefits, expectation that pain is “nor mal), parental reluctance to “bother” medical staff, and children’s reluctance to report pain.

INADEQUATE PAIN CONTROL

¡  Clinicians treating pediatric pain are called upon by the medical staff to assess and manage pain in children with multiple medical conditions. Oftentimes, the clinician deals with issues that stem from the pain experience, such as sleep problems, emotional problems (e.g., depression and anxiety), developmentally inappropriate behaviors, and the inter ference of pain with academic and social activities. In addition, he/she needs to understand how to combine phar macologic and psychological interventions as well as how to educate family and treatment team members about factors that may influence a child’s response to pain.

CLINICIAN’S ROLE

¡  C o g n i t i v e - b e h a v i o r a l t h e r a p y ( C B T ) i s t h e m o s t w e l l - r e s e a r c h e d , n o n - p h r a m a c o l o g i c a l i n t e r v e n t i o n f o r p a i n m a n a g e m e n t i n c h i l d r e n . C B T u s e s a w i d e v a r i e t y o f s t r a t e g i e s t o a s s i s t t h e c h i l d i n d e v e l o p i n g a n d a p p l y i n g c o p i n g s k i l l s t o m a n a g e p a i n a n d u n d e r s t a n d t h a t t h o u g h t s a n d b e h a v i o r c a n i n f l u e n c e h o w p a i n i s e x p e r i e n c e d . C B T a p p r o a c h e s a r e d i v i d e d i n t o p r e p a r a t i o n ( i n a d v a n c e o f t h e m e d i c a l p r o c e d u r e ) , a n d t r e a t m e n t ( i m m e d i a t e l y p r i o r t o , d u r i n g , a n d a f t e r a m e d i c a l p r o c e d u r e . §  Preparation

§  Preparation of children prior to a painful medical procedure may prevent or minimize potential distress and anxiety. Preparation programs typically incorporate the following approaches (Blount, Pira, & Cohen, 2003):

§  Information provision §  Preparatory infor mation is most effective if it includes:

§  Sensory infor mation: Describes the sensations a patient is likely to experience.

§  Procedural Infor mation: Emphasizes the sequence of medical events and procedures

§  Infor mation promotes the development of accurate expectations that may help the patient focus on specific sensations and experiences in concrete, nonemotional ways, therefore allowing the use of more adaptive coping strategies.

§  Habituation may also be facilitated through infor mational exposure. §  Modeling

§  Modeling provides an opportunity to observe a peer, usually by way of a video, using successful coping behaviors during medical procedure while demonstrating successful coping behaviors.

§  Teaching of Coping Strategies

COGNITIVE-BEHAVIORAL APPROACHES

¡  B r e a t h i n g E x e r c i s e s §  Party blower §  Blowing bubbles §  paced counting §  Pretending to inflate and deflate a

balloon ¡  D i s t r a c t i o n

§  Nonprocedural talk §  Humor §  Videotapes §  Games §  Bubbles §  Party Blowers §  Interactive books §  Live music

¡  G u i d e d I m a g e r y §  Enchanted forest §  Safe, pain-Free place

¡  R e l a x a t i o n Tr a i n i n g

§  Progressive Muscle Relaxation (PMR)

¡  R e i n f o r c e m e n t

§  Stickers §  Toys §  Games §  Verbal praise

¡  R e h e a r s a l / C o a c h i n g

§  Modeling §  Practice on doll, parent,

psychologist §  Coaching to remind child to use

strategies

CBT APPROACHES ( C O N T I N U E D )

¡  I m a g e r y i s a c o g n i t i v e s t r a t e g y t h a t i s u s e d t o e n c o u r a g e t h e c h i l d t o c o p e e f f e c t i v e l y w i t h t h e p a i n a s s o c i a t e d w i t h t h e p r o c e d u r e i n s t e a d o f e n g a g i n g i n a v o i d a n c e b e h a v i o r s

¡  G u i d e d i m a g e r y i n v o l v e s h a v i n g t h e c h i l d i m a g i n e a r e l a x i n g s c e n e a n d

d e s c r i b i n g t h e e l e m e n t s a n d s e n s a t i o n s o f t h a t s c e n e t o p r o m o t e c a l m n e s s a n d r e d u c e d a n x i e t y .

¡  C o m m o n t h e m e s i n c l u d e s u n n y p l a c e s , p a r k s , o c e a n s , l a k e s , b e a c h e s , a n d

e n c h a n t e d f o r e s t s . E n c o u r a g e t h e c h i l d t o c o m e u p w i t h t h e i r o w n r e l a x i n g p l a c e a n d t o p r o v i d e t h e d e t a i l s o f s u c h p l a c e a s t h e y i m a g i n e i t . A f t e r c o m i n g u p w i t h t h e i m a g e s t o g e t h e r, t h e c l i n i c i a n c a n t a k e t h e c h i l d o n a “ j o u r n e y ” t o t h i s s a f e a n d p a i n l e s s p l a c e . T h e f o l l o w i n g e l e m e n t s s h o u l d b e i n c l u d e d i n g u i d e d i m a g e s :

§  Visual: Color of the water, trees, rocks, sky, plants; brightness; contrast;

movement of the water, trees, animals. §  Auditory: Sound of the waves, animals, wind, child’s deep breathing, soft

music. §  Olfactory: Smell of the air, water, plants, flowers, trees. §  Kinesthetic: Feel of the ground, sun, wind, sand, rocks on child’s feet, ar ms,

hands, body; feel of child’s deep breathing. §  Emotional: Peacefulness, calm, worry free, relaxed, happy, in control.

GUIDED IMAGERY

¡  Progressive muscle relaxation training (PMR) helps children identify their own their own bodily sensations associated with tension and how to relax. It involves deep- breathing strategies and the systematic tensing and relaxing of the separate muscle groups. The clinician introduces PMR in a session with the child, and can either teach the parents how to do the exercises with their child by following a script, or a tape of the script can be provided so that the child can independently and easily practice the exercises at home. Standardized scripts may be adapted to accommodate a child’s needs (attention span, pain, etc.). §  Refer to sample script in attached pdf on assessment and

management of pain

RELAXATION TRAINING