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

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

2 Overview Connections to Coping– for children newly diagnosed with cancer and their families Connections to Coping– for children newly diagnosed with cancer and their families Need for interventionNeed for intervention Initial Phase: Developing the interventionInitial Phase: Developing the intervention Feasibility Phase – Initial pilot dataFeasibility Phase – Initial pilot data Randomized clinical trial: Current funded interventionRandomized clinical trial: Current funded intervention I Can Cope - for children with moderate, persistent asthma I Can Cope - for children with moderate, persistent asthma Need for interventionNeed for intervention Initial phase: Developing the interventionInitial phase: Developing the intervention Feasibility Phase – Initial pilot dataFeasibility Phase – Initial pilot data Where next?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 12,400 under 19 diagnosed with cancer in USA/year Dramatic improvements in prognosis over the past 4 decades 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. Childrens 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 Vary, but generally include 4 phases 1. Induction of remission Intense chemotherapy regimens until disease-free state is achieved 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 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. Ongoing chemotherapy for 2-3 years after remission is achieved to prevent relapse.

8 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

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

10 Impact of Childhood Cancer on Psychosocial Functioning Unusually stressful life circumstances that can impact quality of life. Unusually stressful life circumstances that can impact quality of life. Uncontrollable and unpredictable nature of disease -- extreme chronic stressor 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) 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 But, psychological adjustment varies across individuals Subgroup at increased risk of psychological and social adjustment problems, including depression, anxiety and social withdrawal. 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). 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) % experience ongoing problems -- marital distress, loneliness, anxiety and depression (Dahlquist et al., 1996; Kupst et al., 1995; Van Dongen-Melman et al., 1995) % endorse moderate-severe symptoms of posttraumatic stress at least one year following treatment (Barakat et al., 1997, Manne et al., 1998) % 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) Siblings may be at greater risk than the child with cancer (Cairns et al., 1979) Symptoms include Symptoms include GuiltGuilt withdrawal,withdrawal, AnxietyAnxiety jealousyjealousy aggressiveness,aggressiveness, feelings of abandonment/rejection by parentsfeelings of abandonment/rejection by parents poor academic achievementpoor academic achievement social isolationsocial isolation (Carr-Gregg &White, 1987).

14 Predictors of Better Psychological Adjustment among Patients Lower perceived stress (disease- specific and non-disease related) Lower perceived stress (disease- specific and non-disease related) Higher social support (family, classmate and teacher) Higher social support (family, classmate and teacher) Family functioning – higher cohesion and expressiveness Family functioning – higher cohesion and expressiveness Higher perceived physical appearance Higher perceived physical appearance Lower parental distress Lower parental distress

15 Role of Parental Adjustment Reviews: Childs adjustment positively associated with Reviews: Childs adjustment positively associated with Maternal adjustmentMaternal adjustment Marital/family adjustmentMarital/family adjustment Family support/cohesionFamily support/cohesion (Lavigne & Faier-Routman (1993). J Dev. Behav. Pediatr. 14: ; Drotar (1997) J. Pediatr Psychol, 22: ) Prospective study: Maternal distress following diagnosis positively associated with childs psychological adjustment 2 years later. 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, 37: )

16 Intervention Studies Possible to identify modifiable vulnerability factors and target them for intervention. Possible to identify modifiable vulnerability factors and target them for intervention. Parental distressParental distress Family functionFamily 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). 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., 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 Hoekstra-Weebers et al., 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: )

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

19 Design of the Intervention Information used to develop the intervention was gathered from: 1. The literature 2. The Parent Advisory Group at CHP 3. Clinical experience at CHP 4. Similar interventions designed for adult patients

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

21 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

22 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

23 Feasibility Study Subjects Subjects 28 patients, 6-18 years and their primary caregiver(s) and any siblings within the study age range living at home28 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 lymphomaWithin one month of a new diagnosis of acute lymphoblastic leukemia or lymphoma

24 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 Drop outs N = 13/20 (65%) N = 5/13 (38%) Standard care controls Drop outs Drop outs N = 6/20 (30%) N = 2/6 (33%) Completed intervention N = 8 (intervention) N = 4 (controls)

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

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

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

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

29 Mean group differences post- intervention ControlInterventionANOVA(p) Depressive Symptoms (CES-D) Anxiety Social support SF36- mental wellbeing

30 Connections to Coping NCI Funded RCT Intervention was modified based on barriers to participation identified in feasibility study Intervention was modified based on barriers to participation identified in feasibility study Multimodal:Multimodal: web site- bulletin boards web site- bulletin boards Telephone contact Telephone contact Shorter sessions in clinic – 30 minutesShorter sessions in clinic – 30 minutes 2 in-home visits2 in-home visits Full time clinician in clinicFull time clinician in clinic

31 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.

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

33 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

34 Psychosocial Interventions in Childhood Asthma (McQuaid et al., 2000) 6 studies 6 studies All used relaxation training All used relaxation training Findings promising Findings promising Improvement in pulmonary function, especially for children who endorse emotionally-triggered asthmaImprovement in pulmonary function, especially for children who endorse emotionally-triggered asthma

35 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 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 Associated with reduction of URI symptoms among children with recurrent URIs

36 The Asthma Model ASTHMA

37 Session 1: The Role of Breathing Introduction to Program Introduction to Program Point System Point System Introduce relationships between stress, breathing, and asthma Introduce relationships between stress, breathing, and asthma Introduce biofeedback and belly breathing Introduce biofeedback and belly breathingHomework Daily breathing practice Daily breathing practice Stress log Stress log

38 Session 2: Physical responses to Stress and Relaxation Learn about stress (focus on physical responses) Learn about stress (focus on physical responses) How can stress trigger asthma How can stress trigger asthma Learn about relaxation (physical responses) Learn about relaxation (physical responses) Teach body awareness relaxation with hand temperature feedback Teach body awareness relaxation with hand temperature feedbackHomework Daily body awareness exerciseDaily body awareness exercise recording hand temperature Continue stress logContinue stress log

39 Session 3: Thoughts and Feelings Use Stress journal to introduce relationship between thoughts and feelings (CBT exercises) Use Stress journal to introduce relationship between thoughts and feelings (CBT exercises) Discuss different methods of coping – including distraction and shifting attention Discuss different methods of coping – including distraction and shifting attention Discuss the physical symptom of muscle tension Discuss the physical symptom of muscle tension Introduce progressive muscle relaxation with EMG feedback Introduce progressive muscle relaxation with EMG feedbackHomework Daily PMR practiceDaily PMR practice Thoughts and feelings exerciseThoughts and feelings exercise

40 Progressive Muscle Relaxation

41 Session 4: Coping with Emotions Introduce range of emotions Introduce range of emotions Link emotions to physical reactions Link emotions to physical reactions How to cope with emotions How to cope with emotions Tolerance/ calm thoughts/expressing emotion. Shifting attentionTolerance/ calm thoughts/expressing emotion. Shifting attention Emotions and asthma Emotions and asthma Guided imagery as method of relaxation with hand temperature feedback Guided imagery as method of relaxation with hand temperature feedbackHomework Daily imagery relaxation practiceDaily imagery relaxation practice Coping with emotions work sheetCoping with emotions work sheet

42 Session 5: Thoughts, Feelings, Sensations, and Asthma Relationships between thoughts, feelings, behaviors and asthma Relationships between thoughts, feelings, behaviors and asthma Apply coping strategies to situations in stress log Apply coping strategies to situations in stress log Apply coping strategies to handling asthma Apply coping strategies to handling asthma Practice preferred relaxation and discuss generalization of skills Practice preferred relaxation and discuss generalization of skillsHomework Daily practice of relaxation of choiceDaily practice of relaxation of choice CBT worksheetCBT worksheet

43 Session 6: My Coping with Emotions and Asthma Plan Pull together coping strategies and develop an individualized plan for coping with asthma Pull together coping strategies and develop an individualized plan for coping with asthma Review skills and discuss maintenance Review skills and discuss maintenance Practice preferred relaxation and discuss generalization of skills Practice preferred relaxation and discuss generalization of skills Rewards and goodbyes Rewards and goodbyes

44 MY COPING SKILLS Belly BreathingRelaxing and calming down by slow breathing using the muscles of the diaphragm so that the belly moves in and out. Pursed Lip BreathingControlling wheezing by breathing out through pursed lips to help get air in and out of the lungs Body RelaxationControlling tension in the body by breathing deeply and moving attention away from a stressful thought and concentrating on parts of the body. Exercise and playingControlling feelings of stress or tension by exercising or playing Caring for yourself- eating and sleeping wellControlling feelings of stress or tension by getting a good nights sleep and eating a balanced diet Thought Digging/ Positive thinkingChange negative thoughts to more positive thoughts that make you feel better and control tension Many meaningsChanging negative thoughts by searching for different meanings to change your thoughts about an event Shifting attentionMoving attention away from a stressful thought or feeling by concentrating on something else instead or changing what you are doing. Muscle RelaxationControlling tension in the body by tensing and relaxing muscles Surfing Unpleasant Feelings1. Thinking calm thoughts 2. Letting emotions out (talking, writing..) 3. Releasing emotions – exercise, relaxation 4. Shifting Attention The Smiling TrickSmiling to yourself to let go of tension in the face and feel better Relaxation using ImageryControlling tension in the body by imagining something pleasant Mini RelaxationsReducing the tension from a stressful event, a thought or wheezing with a short break for relaxation

45 Steps in Research Process 1. Identify clinical population Dr. David Skoner – Pulmonologist/Co-IDr. David Skoner – Pulmonologist/Co-I Recruitment will be no problem Secure funding for pilot study Secure funding for pilot study Fetzer Institute – funded a 2 year pilot project in June 2003 (no cost extension – grant ended June 2006)Fetzer Institute – funded a 2 year pilot project in June 2003 (no cost extension – grant ended June 2006) 1. Create intervention materials: 6 months – complete December months – complete December 2004

46 The I Can Cope Pilot Study Subjects: 20 children Subjects: 20 children 8-12 year-old8-12 year-old Diagnosis of moderate, persistent asthmaDiagnosis of moderate, persistent asthma Endorse emotional triggersEndorse emotional triggers Randomly assigned to intervention (N = 10) and control (N=10) groups Randomly assigned to intervention (N = 10) and control (N=10) groups Intervention: Six 60 minute individual sessions within 3 month period Intervention: Six 60 minute individual sessions within 3 month period

47 Pre- and post-intervention Measures 2 week daily diary completed in morning and at bedtime 2 week daily diary completed in morning and at bedtime Asthma symptomsAsthma symptoms Affect measure - POMSAffect measure - POMS Perceived Stress - PSSPerceived Stress - PSS Open ended stress questionOpen ended stress question Peak flow measurePeak flow measure Lung function- spirometry Lung function- spirometry Salivary cortisol: measured 4 times/day for 2 days Salivary cortisol: measured 4 times/day for 2 days Questionnaires completed by guardian and child – CBCL/ POMS/ CDI/ STAI/ PSS Questionnaires completed by guardian and child – CBCL/ POMS/ CDI/ STAI/ PSS

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

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

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

51 Decrease in Perceived Stress (PSS)** ** t=4.44, p<.001

52 Improved Lung Function* * t=-3.02, p<.02

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

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

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

56 Moral of the Story


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