Pediatric Stress Management Interventions Anna Marsland, Ph.D., RN

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Pediatric Stress Management Interventions Anna
Marsland, Ph.D., RN
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Overview

• Connections to Coping for children newly
  diagnosed with cancer and their families
• Need for intervention
• Initial Phase Developing the intervention
• Feasibility Phase Initial pilot data
• Randomized clinical trial Current funded
  intervention
• I Can Cope - for children with moderate,
  persistent asthma
• Need for intervention
• Initial phase Developing the intervention
• Feasibility Phase Initial pilot data
• Where next?

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The Connections to Coping Study

• Lin Ewing, Ph.D., RN, Anna Marsland, Ph.D., RN,
  Armando Rotondi, Ph.D, Andrew Baum, Ph.D., Jean
  Tersak, M.D , A. Kim Ritchey, M.D

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• 12,400 under 19 diagnosed with cancer in USA/year
• Dramatic improvements in prognosis over the past
  4 decades
• Childrens Oncology Group estimate that survival
  rates have improved since the 1950s from less
  than 10 percent to about 77 percent overall.

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Leukemia and Lymphoma 5 Year Survival Rates
NCI SEER statistics
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Coping with a Chronic Disease

• Current estimates - 1 in 1000 under 20 years is
  a survivor of childhood cancer.
• Shift in psychological emphasis from coping with
  imminent death, to coping with a chronic disease
  with uncertain outcome

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Treatment Protocols

• Vary, but generally include 4 phases
• 1. Induction of remission
• Intense chemotherapy regimens until disease-free
  state is achieved
• 2. Central nervous system prophylaxis
• 3. Consolidation of treatment
• Intensifying treatment to reduce chance of
  resistance to chemotherapy
• 4. Maintenance of treatment
• Ongoing chemotherapy for 2-3 years after
  remission is achieved to prevent relapse.

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Side Effects of Treatment

1. Alopecia (hair regrowth starts 1-3 months into
   maintenance)
2. Moon face Cushings syndrome
3. Nausea and vomiting
4. Diarrhea/constipation
5. Low blood counts susceptibility to infection,
   need for transfusions
6. Fatigue and weakness
7. Mouth and throat sores

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Late Effects of Cancer

• Growth, endocrine function, reproduction
• Brain development and function
• Risk of secondary malignancy
• Late effects on organ function
• ?? Psychological development and function

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Impact of Childhood Cancer on Psychosocial
Functioning

• Unusually stressful life circumstances that can
  impact quality of life.
• Uncontrollable and unpredictable nature of
  disease -- extreme chronic stressor

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Are Children with Cancer at Psychosocial Risk?

• Longitudinal studies Overall risk for emotional
  and behavioral problems no greater than community
  norms (e.g., Sawyer et al., 1997)
• But, psychological adjustment varies across
  individuals
• Subgroup at increased risk of psychological and
  social adjustment problems, including depression,
  anxiety and social withdrawal.

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Are Caregivers at Risk?

• High levels of distress usually decline over the
  first year after diagnosis (e.g., Sawyer et al.,
  1997).
• BUT
• 25-30 experience ongoing problems -- marital
  distress, loneliness, anxiety and depression
  (Dahlquist et al., 1996 Kupst et al., 1995 Van
  Dongen-Melman et al., 1995).
• 35 -37 endorse moderate-severe symptoms of
  posttraumatic stress at least one year following
  treatment (Barakat et al., 1997, Manne et al.,
  1998).

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Are Siblings at Risk?

• Siblings may be at greater risk than the child
  with cancer (Cairns et al., 1979)
• Symptoms include
• Guilt
• withdrawal,
• Anxiety
• jealousy
• aggressiveness,
• feelings of abandonment/rejection by parents
• poor academic achievement
• social isolation
• (Carr-Gregg White, 1987).

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Predictors of Better Psychological Adjustment
among Patients

• Lower perceived stress (disease-specific and
  non-disease related)
• Higher social support (family, classmate and
  teacher)
• Family functioning higher cohesion and
  expressiveness
• Higher perceived physical appearance
• Lower parental distress

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Role of Parental Adjustment

• Reviews Childs adjustment positively associated
  with
• Maternal adjustment
• Marital/family adjustment
• Family support/cohesion
• (Lavigne Faier-Routman (1993). J Dev. Behav.
  Pediatr. 14117 123
• Drotar (1997) J. Pediatr Psychol, 22149-165)
• Prospective study Maternal distress following
  diagnosis positively associated with childs
  psychological adjustment 2 years later.
• (Sawyer et al., (1998). J. Am. Acad. Child
  Adolesc. Psychiatry, 37815-822.)

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Intervention Studies

• Possible to identify modifiable vulnerability
  factors and target them for intervention.
• Parental distress
• Family function

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Intervention Studies - Few

• Kupst Schulman, 1988 Outreach support
  associated with improved maternal coping in early
  treatment, but no differences from controls at 1,
  2, or 6-8 year follow-up (J. Pediat. Psychol.
  137-22).
• Hoekstra-Weebers et al., 1998. Psychoeducational
  intervention in first 6 months after diagnosis
  found to be supportive, but no differences from
  standard care controls on psychological
  functioning or negative affect
• (J. Pediatr. Psychol. 23207-214)

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Objective of Pilot Study

• To develop an intervention for children newly
  diagnosed with cancer and their families designed
  to address modifiable risk factors, including
• Patient, sibling and parental stress
• Social support
• Family Functioning
• Coping strategies/ problem-solving

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Design of the Intervention

• Information used to develop the intervention was
  gathered from
• The literature
• The Parent Advisory Group at CHP
• Clinical experience at CHP
• Similar interventions designed for adult patients

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Initial Intervention

• 6 sessions lasting from 60-90 minutes scheduled
  within the first 3 months following diagnosis
• Children seen separately from parents for 45
  minutes of this period.
• Flexible timing of sessions to fit in with
  medical treatment
• Order of sessions fixed

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The Intervention
Session 1 Building rapport/telling story Stress and coping assessment Introduction to relaxation
Session 2 CBT thoughts, feelings, expectations about illness Impact on whole family
Session 3 Stress management and coping skills training
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Session 4 Coping skills emotion versus problem focused Active behavioral and cognitive techniques Normalization of family routine
Session 5 Parenting ill child and his/her siblings Communication in the family Social skills training
Session 6 Review and application of skills Health Behaviors
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Feasibility Study

• Subjects
• 28 patients, 6-18 years and their primary
  caregiver(s) and any siblings within the study
  age range living at home
• Within one month of a new diagnosis of acute
  lymphoblastic leukemia or lymphoma

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Recruitment
Eligible Patients N 28
Consented to hear about project N 25 (89)
Consented to be randomized N 20 (80)
Dropped out after consent/prior to randomization N 1
Intervention group Drop outs N 13/20 (65) N 5/13 (38)
Standard care controls Drop outs N 6/20 (30) N 2/6 (33)
Completed intervention N 8 (intervention) N 4 (controls)
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Barriers to Participation

• Large catchment area separate intervention
  visits not feasible
• Difficulty accessing family members who do not
  attend clinic visits
• Problem findings time with flexibility
• Changes in treatment protocol

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Outcome Measures

• Patient and Sibling Quality of Life
• The Pediatric Cancer Quality of Life Inventory
  (Varni et al., 1998)
• The Child Health Questionnaire (Landgraff et
  al.,1996) (Patient, siblings)
• Parental Distress
• The SP36 (Ware et al., 1994)
• Perceived Stress Scale (Cohen et al., 1983)
• SCL-90-R (Derogatis, 1983)
• Parenting Stress Index (Abidin, 1983)

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Outcome Measures, Cont

• Child Distress
• CDI (Kovacs, 1992)
• State/Trait Anxiety Inventory for Children
  (STAIC Spielberger, 1973)
• Childrens Hassles Scale (CHS Kanner, Harrison
  Wertlieb,1985)

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Moderator Variables

• Social Support (Child, sibling and parent)
• Coping
• Family Environment
• Control Variables
• Demographics age, SES
• Disease factors (stage, treatment)

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Mean group differences post-intervention
Control Intervention ANOVA (p)
Depressive Symptoms (CES-D) 22.40 14.17 .04
Anxiety 29.05 23.42 .009
Social support 4.22 5.60 .05
SF36- mental wellbeing 39.72 46.83 .09
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Connections to CopingNCI Funded RCT

• Intervention was modified based on barriers to
  participation identified in feasibility study
• Multimodal
• web site- bulletin boards
• Telephone contact
• Shorter sessions in clinic 30 minutes
• 2 in-home visits
• Full time clinician in clinic

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A Stress Management Intervention for Children
with Moderate, Persistent Asthma

• Anna Marsland, Ph.D., R.N. David P. Skoner,
  M.D. Lin Ewing, Ph.D., R.N. Rhonda Rosen,
  M.S.W. Amanda Thompson, Ph.D. Kristin Long
  Megan Ganley Sheldon Cohen, Ph.D.

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Why Pediatric Asthma?

• Etiology multifactorial precipitants
• Environmental allergens
• Physiological predisposition to allergies and
  upper respiratory infection (80-85 of pediatric
  exacerbations involve URI)
• Psychological psychological stress, negative
  emotional states/excitement
• Stress can trigger or exacerbate acute and
  chronic asthma in children (Sandberg et al.,
  2000)

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Theoretical Model Potential Pathways linking
stress to asthma

1. Behavioral e.g., adherence to prophylactic meds,
   changes in sleep, diet, activity
2. Physiological Stress is associated with
   activation of innate inflammatory paths likely to
   be involved in asthma exacerbation
3. Physiological stress is associated with
   increased susceptibility to URI in children

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Psychosocial Interventions in Childhood Asthma
(McQuaid et al., 2000)

• 6 studies
• All used relaxation training
• Findings promising
• Improvement in pulmonary function, especially for
  children who endorse emotionally-triggered asthma

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Stress Management Intervention and Susceptibility
to URI (Hewson-Bower Drummond (2001)

• Comprehensive stress management intervention
  relaxation training, emotion management, coping
  skills training and problem solving
• Associated with reduction of URI symptoms among
  children with recurrent URIs

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ASTHMA
The Asthma Model
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Session 1 The Role of Breathing

• Introduction to Program
• Point System
• Introduce relationships between stress,
  breathing, and asthma
• Introduce biofeedback and belly breathing
• Homework
• Daily breathing practice
• Stress log

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Session 2 Physical responses to Stress and
Relaxation

• Learn about stress (focus on physical responses)
• How can stress trigger asthma
• Learn about relaxation (physical responses)
• Teach body awareness relaxation with hand
  temperature feedback
• Homework
• Daily body awareness exercise
• recording hand temperature
• Continue stress log

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Session 3 Thoughts and Feelings

• Use Stress journal to introduce relationship
  between thoughts and feelings (CBT exercises)
• Discuss different methods of coping including
  distraction and shifting attention
• Discuss the physical symptom of muscle tension
• Introduce progressive muscle relaxation with EMG
  feedback
• Homework
• Daily PMR practice
• Thoughts and feelings exercise

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Progressive Muscle Relaxation
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Session 4 Coping with Emotions

• Introduce range of emotions
• Link emotions to physical reactions
• How to cope with emotions
• Tolerance/ calm thoughts/expressing emotion.
  Shifting attention
• Emotions and asthma
• Guided imagery as method of relaxation with hand
  temperature feedback
• Homework
• Daily imagery relaxation practice
• Coping with emotions work sheet

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Session 5 Thoughts, Feelings, Sensations, and
Asthma

• Relationships between thoughts, feelings,
  behaviors and asthma
• Apply coping strategies to situations in stress
  log
• Apply coping strategies to handling asthma
• Practice preferred relaxation and discuss
  generalization of skills
• Homework
• Daily practice of relaxation of choice
• CBT worksheet

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Session 6 My Coping with Emotions and Asthma
Plan

• Pull together coping strategies and develop an
  individualized plan for coping with asthma
• Review skills and discuss maintenance
• Practice preferred relaxation and discuss
  generalization of skills
• Rewards and goodbyes

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MY COPING SKILLS
Belly Breathing Relaxing and calming down by slow breathing using the muscles of the diaphragm so that the belly moves in and out.
Pursed Lip Breathing Controlling wheezing by breathing out through pursed lips to help get air in and out of the lungs
Body Relaxation Controlling tension in the body by breathing deeply and moving attention away from a stressful thought and concentrating on parts of the body.
Exercise and playing Controlling feelings of stress or tension by exercising or playing
Caring for yourself- eating and sleeping well Controlling feelings of stress or tension by getting a good nights sleep and eating a balanced diet
Thought Digging/ Positive thinking Change negative thoughts to more positive thoughts that make you feel better and control tension
Many meanings Changing negative thoughts by searching for different meanings to change your thoughts about an event
Shifting attention Moving attention away from a stressful thought or feeling by concentrating on something else instead or changing what you are doing.
Muscle Relaxation Controlling tension in the body by tensing and relaxing muscles
Surfing Unpleasant Feelings 1. Thinking calm thoughts 2. Letting emotions out (talking, writing..) 3. Releasing emotions exercise, relaxation 4. Shifting Attention
The Smiling Trick Smiling to yourself to let go of tension in the face and feel better
Relaxation using Imagery Controlling tension in the body by imagining something pleasant
Mini Relaxations Reducing the tension from a stressful event, a thought or wheezing with a short break for relaxation
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Steps in Research Process

• Identify clinical population
• Dr. David Skoner Pulmonologist/Co-I
• Recruitment will be no problem
• Secure funding for pilot study
• Fetzer Institute funded a 2 year pilot project
  in June 2003 (no cost extension grant ended
  June 2006)
• Create intervention materials
• 6 months complete December 2004

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The I Can Cope Pilot Study

• Subjects 20 children
• 8-12 year-old
• Diagnosis of moderate, persistent asthma
• Endorse emotional triggers
• Randomly assigned to intervention (N 10) and
  control (N10) groups
• Intervention Six 60 minute individual sessions
  within 3 month period

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Pre- and post-intervention Measures

• 2 week daily diary completed in morning and at
  bedtime
• Asthma symptoms
• Affect measure - POMS
• Perceived Stress - PSS
• Open ended stress question
• Peak flow measure
• Lung function- spirometry
• Salivary cortisol measured 4 times/day for 2
  days
• Questionnaires completed by guardian and child
  CBCL/ POMS/ CDI/ STAI/ PSS

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Recruitment Nightmare

• Recruitment started in January 2004 and
• finished in September 2006
• Enormous recruitment efforts
• Letter to all Dr. Skoners patients
• Asthma fair in 2004 and 2005
• Asthma basketball clinic 2005
• Respiratory Alliance newsletter to 3,000
  individuals in Western PA
• UPMC and Pitt voice mail
• TV/newspaper/magazines
• Extended recruitment to CHP
• Letters to pediatricians/flyers in doctors
  offices
• Presence in CHP clinics

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Results

• Total number screened 28
• 24 eligible
• 8 not interested (too far, dont drive, child not
  interested)
• 16 enrolled (13 intervention/3 control)
• 11 completed intervention (2 dropouts after
  session 1 practical reasons)
• 1 completed control (2 dropouts- no response)

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Decrease in Depression and Anxiety (POMS)
t3.37, plt.006 t1.52, plt.16
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Decrease in Perceived Stress (PSS)
t4.44, plt.001
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Improved Lung Function
t-3.02, plt.02
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Results, Contd

• Additional trends
• Increased self-reported social support from
  teachers (t -1.16, p lt .14 )
• Parent-reported reductions in problems on CBCL
• School problems (t 1.64, p lt .14)
• Social problems (t 1.60, p lt .14)
• Attention problems (t 1.46, p lt .18)
• Total problems (t 1.42, p lt .19)

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Feedback from Participants

• Overall positive
• Skills to avoid asthma episodes
• Skills used to handle stress in general
  (relationships, school, auditions)
• Improvement in a participants eczema
• Requests to bring non-asthmatic siblings in for
  training
• Very encouraging

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Obstacles to Study

• Lack of interest
• Location many unwilling to come into Oakland
  for 6 sessions too intense
• Busy lives difficult to schedule sessions
• Too many questionnaires
• Busy doctors

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Moral of the Story
Do not count on intervention research early in
your career!