Family-centered Stress Management for Childhood Cancer: A Multimodal Intervention for Children Newly Diagnosed with Cancer and their Families

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1 Family-centered Stress Management for Childhood Cancer: A Multimodal Intervention for Children Newly Diagnosed with Cancer and their Families Linda Ewing, Ph.D., RN Department of Psychiatry University of Pittsburgh Anna L. Marsland, Ph.D., RN Department of Psychology University of Pittsburgh

2 SPECIAL THANKS TO.. Chelsea Howe, MA, LPC Kristin Long, MS Lauren Bill, MA Amanda Thompson, Ph.D. Participants in the Connections to Coping Project Funding: R21 CA04255 National Cancer Institute

3 Childhood Cancer Today Major advances in medical technology and health care have dramatically changed the profile of childhood cancer. 80% of affected children will become long term survivors (American Cancer Society, 2006). However.

4 Stressful Life Circumstances Confronted by Families Threat to child s life Repeated hospitalizations Clinic Visits Intensive chemotherapeutic treatment regimens that include side effects Alteration of family roles and responsibilities Financial impact

5 Outcomes of Chronic Stress of Childhood Cancer in a Family Post-traumatic stress symptoms in a subset of mothers (25-30%) Post-traumatic stress disorder diagnosed in another subset of mothers of Associated distress in child with cancer and siblings Varying amounts of lasting family distress and dysfunction

6 Addressing Needs of Families Facing Stress of Childhood Cancer Adult cancer literature documents effectiveness of cognitive-behavioral stress management training, emotional support, and problem-solving and coping strategies enhancement to reduce depression, anxiety and improve self-esteem. We developed, implemented and evaluated the potential utility of a multimodal stress management intervention to affect coping skills and social support in families of children newly diagnosed with cancer

7 Theoretical Model The family-centered intervention Connections to Coping is guided by Lazarus and Folkman s influential theory of stress and coping. Model posits that how people appraise situations is an important determinant in their judgments of whether an event is a threat Our intervention targets primary appraisal (threat perception) by means of social support and secondary appraisal (personal resources to cope) by means of enhancing existing coping skills

8 Conceptual Model Childhood Cancer Diagnosis Increased Coping skills (e.g., emotion regulation) *Parent *Child Increased Perceived Social Support *Parent *Child Decreased Distress Depression Anxiety Post traumatic stress Improved Quality of Life Stress Management and Coping Skills Intervention (Connections to Coping)

9 Family-centered Intervention Connections to Coping

10 Goals An initial effort to include all family members in the supportive intervention since all are affected by the cancer Families often splintered with one parent attending to the intense needs of the ill child; other parent often attending to needs of other children Much more difficult to reach the parent providing care and support at home Difficult to reach siblings who may be at significant risk for poor outcomes emotionally and socially.

11 Participants 49 children newly diagnosed with cancer (ages 8-17 years) and their caregivers and same age-range sibs 19 child participants were ages 15 to 17 years; 17 were ages 12 to 14 years; 13 were ages 8 to 11 years 24 females and 25 males comprised the sample of children and adolescents with cancer 40 were Caucasian and 9 were African American Caregivers aged years

12 Inclusion and Exclusion Criteria Inclusion Criteria: Child between the ages of 8-17 years Child newly diagnosed with all cancers other than CNS tumors Child must have at least one biological or adoptive parent who agrees to participate Exclusion Criteria: Mental Retardation or pervasive developmental disorder CNS cancers A life expectancy of less than 4 months Psychiatric symptoms significantly severe to require immediate attention Inability of child or his/her caregiver to speak English

13 Procedure 34 families were randomized to the intervention group and 15 families to the control group. The randomization schedule was 2:1. Intervention Components: Connections to Coping Multimodal stress management and coping enhancement intervention 6 face to face sessions over 4 months (at clinic or home) Bi-monthly telephone contact (with parent and ill child) Web-site to provide support in the home (especially to siblings and parent providing homefocused care) Control: Standard Care

14 Assessments All participants were assessed on 3 occasions: Time 1: Within 2 weeks of their child s diagnosis Time 2: 4 months later Time 3: 11 months later

15 Caregiver Psychosocial Assessments Beck Depression Inventory Revised Impact of Event Scale Child Health Questionnaire (Parent Report) Interpersonal Support Evaluation List Perceived Stress Scale Quality of Life Scale (Family Version) State-Trait Anxiety Scales Coping Health Inventory for Parents Family Adaptability and Cohesion Scales III

16 Child and Adolescent Psychosocial Assessments Social Support Services for Children People In My Life Child Health Questionnaire (Child Report) Pediatric Cancer Quality Of Life Inventory (Child or Teen Form) KIDCOPE (Child or Teen Form) Child Depression Inventory State-Trait Anxiety Scales (Child or Teen Form)

17 Intervention Children & Adolescents Sessions 1-3 Session 1: Session 2: Session 3: -Introduction to Relaxation -Make Coping Plan -Normal Responses to Being Sick -Learn Belly Breathing -Learn about Stress and its Causes -The Body s Response to Stress -Relaxation Skills

18 Intervention Children & Adolescents Session 4: -Learn about thoughts and feelings --Guided imagery exercise Session 5: -Talking with Friends and Family -How to Deal with Teasing Session 6: -Review Skills -Relaxation Exercise -Goodbyes Sessions 4-6

19 Intervention Caregivers Sessions 1-3 Session 1 :- Introduction to Relaxation - Caring for Yourself - Managing Medical Procedures - Tips for Talking to Children about Cancer Session 2: - Normal Responses to Having a Child with Cancer - Ways of Reducing Family Distress - Introduce Family Meetings - Introduce Deep Breathing Session 3: - Causes of Stress and Physical Responses to Stress - Methods of Coping with Stress - Introduce Progressive Muscle Relaxation

20 Intervention Caregivers Sessions 4-6 Session 4: - Emotional Responses to Stress - Relationship between Thinking and Feeling - Cognitive Methods of Coping Session 5: - Communication Styles Session 6: - Parenting a Child with Cancer - Review of Skills and Discuss Maintenance

21 Results Few fathers participated in the intervention, either at the clinic or in use of web-based opportunity provided in the home. Few siblings accessed the web-based intervention Children with cancer in the intervention group reported less anxiety symptoms at post-intervention assessment than those randomized to the control group Most significant findings were among mothers

22 Time 1 and Time 2 Changes on State Anxiety Inventory in Child with Cancer Children with cancer assigned to the intervention group showed greater pre-topost intervention decreases in state anxiety than those in the control group (F(1,31) = 4.42, p = Group Intervention Control Spielberger State Anxiety Time 1 Time 2

23 Time 1 to Time 2 Changes on the Beck Depression Inventory among Mothers assigned to the Intervention and Control Groups with High and Low Perceived Social Support Depression by Group and Baseline Social Support Change Score Intervention Control Low Social Support High Social Support Group

24 Time 1 to Time 2 Changes on the Perceived Stress Scale among Mothers assigned to the Intervention and Control Groups with High and Low Perceived Social Support Perceived Stress by Group and Baseline Social Support 8 Change Score Intervention Group Control Low Social Support High Social Support

25 Time 1 to Time 2 Changes on the State Anxiety Inventory among Mothers assigned to the Intervention and Control Groups with High and Low Perceived Social Support State Anxiety by Group and Baseline Social Support 10 Change Score Intervention Control Low Social Support High Social Support Group

26 Social Support as a Moderator Findings indicated that social support is a moderator of psychological response to the intervention. Mothers with lower perceived social support at the time of their child s s diagnosis showed greater decreases in distress pre-to to-post intervention than those who perceive themselves as more supported.

27 Conclusions Findings provide support for targeting a modifiable risk factor (perceived social support) in a high-risk group of mothers (those who report low perception of support at their child s diagnosis) Maternal distress predicts increased behavioral, emotional and social difficulties among both children with cancer and their siblings (Maurice-Stam H et al., 2008). Early identification and treatment of high-risk mothers could impact not only maternal psychological health, but also the health of children in the family.

28 Challenges to Family-centered Approach to Supportive Intervention High stress in families at early diagnosis of child with many demands for adjustment and coping Either or both parents invited to participate, but only 2 fathers Difficult to engage fathers Difficult to reach siblings Labor intensive and costly; translatable? Web-based intervention that attempted to both provide intervention to family members at home, and also link families with other families was under-utilized Timing of offering web component? Not enough families participating at any one time

29 Lessons Learned Timing of provision of intervention is key; likely need different approaches with different family members at different times along the course of treatment Connecting families with others going through similar experience is desirable (for them), is available with technology, and needs further development Identification of families and family members that are at higher risk for poorer outcomes is important goal of ongoing intervention efforts More efforts needed to assess needs of fathers and respond to them effectively

30 Future Directions Examine in a sample of high-risk mothers, randomized either to a Supportive Stress Management intervention or usual care, whether participation in a supportive stress management intervention is: (1) Associated with improvements in psychological function (decreased symptoms of depression, anxiety and psychological stress); and (2) Whether intervention-related decreases among high-risk mothers mediate decreases in distress among other family members (father, the child with cancer and his/her siblings).

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