Looking At The Whole Picture: The Feasibility and Effectiveness of a Mutli-

disciplinary Group Intervention for Youth With Sickle Cell Disease (SCD) and Their Families

Rachel S. Labaton, MA, Therapist, La Salle University

Not attending:

Dahra J. Williams, PhD, Faculty, La Salle University

Steven Reader, PhD, Staff Psychologist, Behavioral Health, Alfred I. duPont Hospital for Children

Jean Wadman, APN, Hematology/Oncology, Alfred I. duPont Hospital for Children

Collaborative Family Healthcare Association 13th Annual ConferenceOctober 27-29, 2011 Philadelphia, Pennsylvania U.S.A.

Session # I-1 Data BlitzOctober 28, 201110:30 AM

Faculty Disclosure

We have not had any relevant financial relationships during the past 12 months.

Need/Practice Gap & Supporting ResourcesWhat has been done: Education and Cognitive Behavioral Therapy

Techniques - Psychoeducation; Deep breathing, relaxation, pleasant imagery, calming self-statements, nonpharmacological coping.

Significant findings • Increase in disease knowledge, perceived

social support, and positive coping attempts.• Decrease in negative thinking, lower pain

ratings, decreased SCD related ER visits (Broome, Maikler, Kelber, Bailey, and Lea, 2001; Gil et al., 1997; Hazzard, Marianne, and Marietta, 2002; Kaslow et al., 2000; Powers, Mitchell, Graumlich, Byars, and Kalinyak, 2002).

Acceptance and Commitment Therapy(ACT) ACT aims to change one’s relationship with their

experiences (thoughts, emotions, and pain)

Promising results with adolescent chronic pain populations

No studies with ACT and youth with SCD(McCracken, 1998; McCracken & Vowles, 2008; Wicksell, Melin, & Lekander, 2009)

Current literature base– Few empirically valid youth studies– Lack of studies targeting youth

with SCD– Lack of manualized interventions– Overall lack of feasibility studies

Present study– Provide information on feasibility

of intervention.– Virtually nonexistent among SCD

youth interventions.– Add to the evidence base on

minorities and their participation in studies or treatment.

– Add to the evidence base of adolescent chronic pain populations.

Objectives

• Identify and Describe common medical and psychological concerns related to pediatric SCD.

• Describe the relation between pain acceptance, values-driven behavior and quality of life among adolescents with SCD.

Expected Outcome

Participants will be able to evaluate the benefit of a group psychotherapeutic intervention with adolescents with Sickle Cell Disease.

What is Sickle Cell Disease?

(Drotar, Withspoon, & Zebracki, 2006; Lemanek, Ran alli, Green, Biega, & Lupia, 2003; National Heart, Lung, and Blood Institute, 1996 )

• Congenital hematologic disorder that produces abnormal hemoglobin in red blood cells

• Results in sickled (crescent) or damaged cells, restricted blood flow, decreased oxygen to vital organs, muscle, tissue

• Chronic in nature, unpredictable, life threatening

Associated Medical and Psychosocial Aspects

• Aspects Related to Psychological Sequela– Physical limitations (sports)– Interruption of academic and social

interactions• Problematic peer and family

relationships

– Emotional disorders• Anxiety, depression, negative self-

concept

– Delayed sexual maturation• Postponement of puberty and derail

of normal development

– Neurocognitive and learning impairments

• Medical– Organ damage– Infections– Acute pulmonary events or

chronic lung disease– Skeletal complications– Renal dysfunction or failure– Retinopathy– Protein and iron deficiencies– Delayed growth– Anemia– Acute and chronic tissue injury

(Drotar et al., 2006; Lemanek et al., 2003; Lemanek & Green, 2009) )

Participants

• 14 children/adolescents (10 male, 4 female) between the ages of 11-18 years of age and their primary caregivers

• Recruited from Sickle Cell Program at the Alfred I. DuPont Hospital for Children (AIDHC)

• Inclusion criteria– Within stated age

range– Diagnosed with SCD– Attend first session

with parent or legal guardian

– Speak English

Intervention Design

• Groups took place at AIDHC over three Saturdays.

• Families met together with interventionists and research assistants for breakfast - provided by staff.

• Following breakfast, parents and youth split into separate groups for the intervention over 1.5 hours.

• The parent group was led by an Advanced Practice Nurse and Social Worker– Discussed issues related to

parenting a child with SCD such as nature of SCD, home pain management, transitioning to adult hematology services, etc.

• The youth group was led by psychologists and advanced doctoral students.

• The following intervention and data are solely from the youth group.

Manual

• Activity-based interaction manual

• Designed with consultation from a multidisciplinary team of professionals with expertise in pediatric SCD.

• Includes developmentally informed sections for each session.

• Appendices consist of 15 different icebreakers to aid in establishing rapport and cohesion, as well as handouts and worksheets related to session-specific content.

The Youth Intervention• MODULE 1: Introductions/ Completion of Baseline Data Packets

– Icebreaker– Present group aims and expectations– Brainstorm obstacles to attendance

• MODULE 2: Psychoeducation on Sickle Cell Disease– Icebreaker– Myth vs Reality– Psychoeducation– Special issues for teenagers– FARMS for pain prevention– Developmentally tailored activity

• MODULE 3: Cultivating Acceptance and Values– Icebreaker – Myth vs Reality– Define and discuss acceptance related to pain– Experiential exercise– Identify and discuss avoidance of pain– Introduce and identify values

The Youth Intervention

• MODULE 4: Nonpharmacological Pain Reduction Interventions– Icebreaker– Myth vs Reality– Review ways to prevent pain– Discuss ways to manage pain

• Distraction, coping self-statements, diaphragmatic breathing, pleasant imagery, progressive muscle relaxation

• MODULE 5: Recap and Review– Review previous sessions– Troubleshoot any problem areas– Complete post-treatment data packets and feedback surveys

***Pediatric Quality of Life Inventory 4.0 SCD Therapist Feedback Questionnaire

**Client Satisfaction Questionnaire

**SCD Participant Feedback Questionnaire

*Demographic Questionnaire

SCD Treatment Integrity Checklist

Measures

*Pre Data**Post Data***Pre and Post Data

***Pediatric Quality of Life Inventory 4.0 **Client Satisfaction Questionnaire

**SCD Participant Feedback Questionnaire

***Chronic Pain Acceptance Questionnaire

***Chronic Pain Values Inventory

Sickle Cell Self-Efficacy Scale

Primary Caregiver Youth Interventionists

Hypotheses and Findings

H1: Barriers

H2: Attrition

Recruitment And Retention

1

H3: Randomization

H4: Adherence

H5: Treatment Manual

TreatmentIntegrity

2

H6: ParticipantSatisfaction

Satisfaction

3

H7: Quality of Life

H8: Self-Efficacy

PreliminaryOutcomes

4

Recruitment and RetentionH1: Barriers to Participation. Participants will

endorse barriers to participation

•Transportation•Admitted to hospital at time of session•Work schedules of parents and youth•General availability

Recruitment and RetentionH2: Attrition. Some participants will discontinue the intervention.

Reported Reasons for Attrition•Inpatient or in ER•Transportation•Work Schedule Conflict of parent and/or youth•Parent unable to attend due to various reasons (e.g., Doctors

appointment or home sick with flu, family crisis)

Session 1Session 2Session 3

Cohort 1 (n = 10)

10 9 4

Cohort 2 (n = 4)

1 4 3

Youth Attendance

Treatment IntegrityH3: Randomization. Participants in each condition will be randomized successfully.

Due to limited number of participants, all participants were assigned to the parent + youth group.

This was an executive decision made by hospital staff and principal investigator.

Treatment IntegrityH4: Adherence to Timeline and Degree of Execution. Trained clinicians will adhere to the manual and implement the intervention as it was designed, fully delivering all content for each of the five modules over three weeks.

Module 1: Intro + Pre Data 50%

Module 2: Psychoed on SCD92%

Module 3: ACT 95%

Module 4: Nonpharm Pain 98%

Module 5: Review + Post Data100%

Percentage of Content Covered

Treatment IntegrityH5: Treatment Manual. Trained clinicians will deem the manual appropriate.

Ease of Use Clarity Engagement

Module 1: Intro + Pre Data 4.7 4.3 4.3

Module 2: Psychoed on SCD 4.7 4.7 5.0

Module 3: ACT 4.8 4.8 5.0

Module 4: Nonpharm Pain 4.5 4.3 4.8

Module 5: Review + Post Data4.5 4.0 3.5

Overall 4.6 4.4 4.5

*Rating Scale: 1-Needs Improvement, 3-Satisfactory, 5-Excellent

Manual Appropriateness

Treatment IntegrityH5: Treatment Manual. Trained clinicians will deem the manual appropriate.

BarriersMost Useful/

Helpful/Engaging

Module 1: Intro + Pre Length of measuresDeveloping rapport over breakfast

Module 2: Psychoed on SCDLimited time; Organization of manual; Shy participants

Education on SCD; Handouts; Punnett squares

Module 3: ACTLimited time; Adapt ACT language more for younger populations

Experiential exercises for ACT: Finger Traps & Pt generated examples; Ice breaker

Module 4: Nonpharm PainLimited time; Organization of manual; No mats for experientials

Experiential exercises: PMR Breathing

Module 5: Review + Post Lack of interactive content; Items to review are not clearly listed

Group discussion; Referring back to worksheets and exercises

Suggestions

Evaluation of Intervention Manual by Interventionists

Less measures; More specific areas to address for barriers and expectations

More engaging ice breaker; Longer session; More physically engaging activities

Some activities more engaging than others; More physical participation

More time; More experientials; Provide mats

More time (30min); List points to cover or create Jeopardy game that would cover all content

H6: Participant Satisfaction. Participant Satisfaction

QuestionAverage Youth Rating

Average Parent Rating

Quality of Service 3.8 4.0Kind of Service 3.2 4.0Extent Needs Met 4.0 3.6Recommend Friend 4.0 4.0Satisfaction 3.8 3.6Deal More Effectively 3.8 3.7Overall Satisfaction 3.6 4.0Attend Again 3.6 4.0

TOTAL 29.8 30.9

Client Satisfaction Questionnaire - 8

* Possible ranges of scores include 1-4 for individual questions and from 8-32 for the totals. Higher rating indicates greater satisfaction.

ItemAverage Youth Rating

Average Parent Rating

Enjoyable/Interesting4.6 4.9Group Leaders Respectful5.0 5.0Effective Communication 4.6 5.0

Participant Feedback Questionnaire

*Ratings range from 1-5 with higher ratings indicating more positive response.

H6: Participant Satisfaction. YouthParticipant Satisfaction

What did you like most about our program?Meeting other kids with SCD.Learning about things to help with my SC.The binder with different strategies to cope with pain and the recipes.The topics covered and learning things I did not know before.The information.

Was there anything you did not like about the program?No.

What would you change about our program? Questions are sometimes hard to understand like on the acceptance

questionnaire.We should meet more often.If you could provide transportation.

Do you have any additional questions or feedback for us?No.

H6: Participant Satisfaction. ParentsParticipant Satisfaction

What did you like most about our program?The kids can get together and talk together about different issues.Opportunity to meet and interact with other parents and children.To share and learn about issues with SCD. A very positive and enriching experience. Informative and supportive.

Was there anything you did not like about the program?The paper work.

What would you change about our program? If we could have it at another place. Less paper work or mail it out before the sessions.

Do you have any additional questions or feedback for us?Mail out pre registration packets before first group.Meetings for children and parents after the group.Create a newsletter for children and parents.Allow kids to bring supportive friends and relatives to the group.More handouts.

Hypotheses: Preliminary Outcomes

H7: Quality of Life.

M SD

Week 1 73.2 13.4

Week 3 71.9 11.1

M = mean, SD = standard deviation

Youth Rated Quality of Life

Hypotheses: Preliminary Outcomes

H7: Self-Efficacy.

M SD

Week 1 24.5 4.5

Week 3 26.8 2.5

M = mean, SD = standard deviation

Youth Rated Self-Efficacy

Hypotheses: Preliminary Outcomes

H7: Quality of Life, Values, Acceptance.

Acceptance of Pain

Success Values

Import Success

QOL TotalQOL Social Functioning

QOL Emotional

Functioning

QOL Physical Functioning

Acceptance of Pain

1 -0.484 0.154 -0.606 -0.449 -0.278 -.817*

Success and Values

1 -.872** .848** .713* .858** .827*

Importance and Success

1 -.822* -.797* -.916** -0.635

QOL Total 1 .878** .723* .827**

QOL Social Functioning

1 0.609 0.627

QOL Emotional Functioning

1 0.378

QOL Physical Functioning

1

*. Correlation is significant at the 0.05 level (2-tailed).**. Correlation is significant at the 0.01 level (2-tailed).

Correlations

Questions?

Session Evaluation

Please complete and return theevaluation form to the classroom monitor

before leaving this session.

Thank you!