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

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

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

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  1. Pediatric Stress Management InterventionsAnna Marsland, Ph.D., RN

  2. 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?

  3. 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

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

  5. Leukemia and Lymphoma – 5 Year Survival Rates NCI: SEER statistics

  6. 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

  7. 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.

  8. Side Effects of Treatment • Alopecia (hair regrowth starts 1-3 months into maintenance) • Moon face – Cushing’s syndrome • Nausea and vomiting • Diarrhea/constipation • Low blood counts – susceptibility to infection, need for transfusions • Fatigue and weakness • Mouth and throat sores

  9. 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

  10. 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

  11. 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.

  12. 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).

  13. 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).

  14. 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

  15. Role of Parental Adjustment • Reviews: Child’s adjustment positively associated with • Maternal adjustment • Marital/family adjustment • Family support/cohesion (Lavigne & Faier-Routman (1993). J Dev. Behav. Pediatr. 14:117 123; Drotar (1997) J. Pediatr Psychol, 22:149-165) • Prospective study: Maternal distress following diagnosis positively associated with child’s psychological adjustment 2 years later. (Sawyer et al., (1998). J. Am. Acad. Child Adolesc. Psychiatry, 37:815-822.)

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

  17. 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. 13:7-22). • 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. 23:207-214)

  18. 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

  19. 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

  20. 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

  21. The Intervention

  22. 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

  23. Recruitment

  24. 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

  25. 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)

  26. Outcome Measures, Cont • Child Distress • CDI (Kovacs, 1992) • State/Trait Anxiety Inventory for Children (STAIC; Spielberger, 1973) • Children’s Hassles Scale (CHS; Kanner, Harrison & Wertlieb,1985)

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

  28. Mean group differences post-intervention

  29. “Connections to Coping”NCI 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

  30. 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.

  31. 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)

  32. Theoretical Model: Potential Pathways linking stress to asthma • Behavioral: e.g., adherence to prophylactic meds, changes in sleep, diet, activity • Physiological – Stress is associated with activation of innate inflammatory paths likely to be involved in asthma exacerbation • Physiological – stress is associated with increased susceptibility to URI in children

  33. 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

  34. 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

  35. ASTHMA The Asthma Model

  36. 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

  37. 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

  38. 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

  39. Progressive Muscle Relaxation

  40. 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

  41. 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

  42. 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

  43. MY COPING SKILLS

  44. 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

  45. 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 (N=10) groups • Intervention: Six 60 minute individual sessions within 3 month period

  46. 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

  47. Recruitment Nightmare • Recruitment started in January 2004 and finished in September 2006 • Enormous recruitment efforts • Letter to all Dr. Skoner’s 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

  48. Results • Total number screened: 28 • 24 eligible • 8 not interested (too far, don’t 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)

  49. Decrease in Depression** and Anxiety* (POMS) • ** t=3.37, p<.006 • * t=1.52, p<.16

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