MEND: A MULTI-DIMENSIONAL FAMILY SYSTEMS BASED APPROACH TO CHRONIC ILLNESS

Mia Pandit, PhD, LMFT

Daniel Tapanes, MA, LMFT

Griselda Lloyd, MS, MFTI

Jackie Williams-Reade, PhD, LMFTLoma Linda University

Collaborative Family Healthcare Association 17th Annual ConferenceOctober 15-17, 2015 Portland, Oregon U.S.A.

Session # E4b/E4cOctober 17, 2015

Faculty Disclosure

The presenters of this session»have NOT had any relevant financial relationships during the past 12 months.

Learning Objectives

At the conclusion of this session, the participant will be

able to:

»Deepen their understanding of the complex family dynamics that can facilitate or constrain disease management and overall coping

»Acquire knowledge about how the MEND program intervenes with families along a spectrum of issues, including an individual’s stress response system and illness meanings to help improve patient and family coping.

»Increase their skills in adapting family systems concepts into creative therapeutic interventions

Faculty Disclosure

The presenters of this session»have NOT had any relevant financial relationships during the past 12 months.

MEND: A MULTI-DIMENSIONAL FAMILY

SYSTEMS BASED APPROACH TO

CHRONIC ILLNESSMayuri (Mia) Pandit, Daniel Tapanes, Griselda Lloyd, Jackie Williams-Reade

Introduction to MEND» MEND is an intensive outpatient

program that addresses the psychosocial stressors experienced by patients and their families in order to improve overall health related quality of life.

» Based on an ecological, family systems, and bio-behavorial stress response conceptual framework (see Distelberg et al., 2014)

Mastering Each New Direction

Prevalence of Chronic Illnesses

1. Approximately 1 in 2 American adults live with at least one chronic illness. Approximately one-fourth of persons living with a chronic illness experience significant limitations in daily activities (WHO, 2009)

2. It is estimated that upwards of 27% of children in the United States have an existing

chronic illness (Modi, Pai, Hommel et al., 2012).

Chronic Illness Through a Biopsychosocial Lens

Chronic Illness is a multi-dimensional issue (bio-psycho-social-spiritual) (Wood, 1993)

Chronic Illness and Psychosocial Interventions

1.The adolescent age is an crucial developmental window for children to learn and take ownership of their illness and treatment protocol (La Greca et al., 1995)

2.There is a significant proportion of children that struggle to achieve this developmental milestone, which leads to preventable negative outcomes (Dashiff et al., 2005; Kuhn, Distelberg & France, 2014)

3.Helping these adolescents achieve this milestone requires a multi-systemic approach

4.Engaging the multiple ecosystems around the adolescent can result in improved health, quality of life, better treatment adherence, improved cognitive functioning and improved academic achievement.

5.Without a multi-systemic approach 35 programs nationally have shown positive effects with limited sustainability (Eccelston, et al., 2012).

Anxiety: Fears regarding illness, worries about getting sick again, life expectancy and academic, career / social limitations. Body Image: Adjusting to bodily changes due to medication side effects including scars, catheters, and growth limitations. Compliance: Difficulty adhering to medication management, diet, or physical restrictions, and exercise recommendations.

Depression: Sadness related to adjustingto a life with limitations, ‘survivors guilt,’ and depression related to missed school/work days.  

 

Family Issues: Rebellion or resistance with medical regimens, affecting family relationships and functioning.  Grief and Loss: Grieving the loss of a healthy body and a life with limitations of action and longevity. Self-esteem: Feelings of not being normal due to illness medications, diet and physical restrictions.

Stress: Difficulty with financial circumstances, relationships and social support, and biopsychosocialspiritual health.

Video

MENDSeven Weeks = 21 days (sessions)

Principle Based: Four Phase ModelUnique components:

• Mentoring component (increased self efficacy)• Multi-family Group• Inclusion of psycho-education (emotional reactivity)

M.E.N.D Program:            Adolescent Treatment Schedule 

Time Monday Wednesday Thursday3:30 - 4:30 Check-in

ProcessingCheck-in Processing

Check-in Processing

4:30 - 5:30 Group Therapy Group Therapy Group Therapy5:30 – 6:30 Multi-Family Group Interoception:

Experiential Group Therapy

Art TherapyMusic Therapy

 

Multi-Family Group

M.E.N.D. Program:    Adolescent Parent Schedule 4:30 – 5:30 Parent Education Parent Education5:30 – 6:30 Multi-Family Group   Parent Support Multi-Family Group

Phase I: Orientation, Assessment, and Language

Step One: Orientation and Development of Therapeutic Relationship

Step Two: Biopsychosocial Assessment

Step Three: Language Learning and Teaching

Goal: Orient to MEND, assess patient and family, and learn patient’s

Language

Phase II: Introspection and Congruence

Step One: Mind-body Connections (Interoception)

Step Two: Language Development

Step Three: Congruence

Step Four: Patient Meaning Response Testing

Step Five: Systemic Adjustment

Goal: Develop introspection/interoception and create congruence for patient and family

IV Phases of MEND

Phase III: Meaning and Expression of Change

Step One: Creating Changes in Meaning

Step Two: Systemic Acceptance of Change

Goal: Solidify positive illness meaning and expression of change

Phase IV: Change Generalization and Reintegration/ Mastery and Maintenance

Step One: Change beyond the individual and system

Step Two: Graduation

Goal: Generalize

IV Phases of MEND

Case Examples

Language LearningPsychogenic Congruence

•ExpressionoArtoWritingoVerbal process

•Normalization of Experience• Peer Culture•Psychoeducation•Mirroring•No Co-authorization•Zero Responses to Identified Power

Veteran Case Example

Veteran Case Example

Veteran Case Example

Program Research EffortsFamilies Served

1. 56 Families have participated in evaluation efforts2. 89-120 families receive MEND annually3. Estimated potential population is 6,000 families within the IE

Cost of MENDIn 2014 the cost was $5,350

Evaluation Plan1. Preliminary Chart Review Study2. Creation of a manual3. In-depth, within-subject pilot study4. Illness experience/perception qualitative study5. RCT prospective trial

Dissemination Efforts1. 4 peer reviewed papers2. 2 international conference presentations3. This fall three more conference presentations are planned4. 4 Grand Rounds Presentations

Initial Chart Review Study

Child Outcomes:

All child outcomes saw a significant decrease in problems associated their chronic illness (with effect sizes ranging between r2 = .18-.64).

These measures ranged from problems in:

1.Physical Functioning2.Emotional Functioning3.Social Functioning4.Cognitive Functioning5.Psychosocial Functioning6.Days of school missed (reduced by 80%)

Distelberg, Williams-Reade, Tapanes, Montgomery & Pandit, 2014

30

50

70

90

Baseline Post Test

Total: Parent Report

Total: Child Report

Healthy Child = 85.34 [84.4-86.2]Healthy Parent = 83.8 [82.8-84.8]Diabetes Child = 77.9 [75.1-80.6]Diabetes Parent = 76.2 [72.9-79.4]

95% confidence intervals

MEND Improvements in Health Related Quality of Life

Initial Chart Review Study

Pilot Study: Outcomes

Child FunctioningBaseline Post 3 Month Post F(df)

N M SD N M SD N M SD

Functional Impairment

Missed School 15 12.53 12.11 1.600 3.020 1.730 3.150 ***10.43(2, 28)Need Caregiver 15 10.2 12.64 7.070 11.580 3.130 7.940 **4.32(2,28)ER Visits 15 2.42 2.07 1.42 2.81 0.42 0.51 **5.14(2, 28)Too Sick to Play 15 9.75 10.97 1.440 2.680 1.250 2.230 ***9.27(2, 28)

WASIWASI_FSIQ 17 91.06 14.07 95.290 12.600 96.47 15.79 **4.92(2,32)WASI_PRI 17 94.59 14.96 100.88 15.430 100.2 16.61 **5.08(2,32)WASI_VCI 17 89.82 13.43 91.120 12.370 93.35 14.09 .93(2,32)

BYIBAI_Y.2: Beck Anxiety Inventory 15 56.53 14.19 48.93 10.94 48.80 13.10 *4.08(2, 28)BDI_Y.2: Beck Depression Inventory 15 55.53 14.15 50.87 11.31 51.80 14.62 1.04(2,28)BSCI_Y.2: Beck Self Concept Inventory 15 40.87 15.22 44.80 15.97 46.13 12.78 1.33(2,28)

Child HRQLBaseline Post 3 Month Post F(df)

N M SD N M SD N M SD

PedQL

Emotional Functioning 15 45.67 30.05 62.00 21.20 73.33 23.95 ***11.45(2,30)Physical Functioning 14 50.89 24.59 64.96 28.59 66.74 31.86 †2.52(2,26)School Functioning 13 47.31 21.27 64.23 14.56 62.30 17.15 *3.52(2,26)Social Functioning 14 56.43 20.13 70.71 20.74 70.36 28.32 †2.41(2,26)

Missed Days of School Pre and Post MEND

Pilot Study: Outcomes

Family ImpactBaseline Post 3 Month Post F(df)

N M SD N M SD N M SD

PedsQL

Family Activity 14 57.74 26.84 69.05 24.33 71.42 25.47 1.84(2,26)Family Cognitive Stress 15 58.33 23.88 71.00 20.28 71.67 31.83 †2.97(2,30)Family Communication 15 61.67 22.45 67.78 22.02 81.11 23.46 *4.36(2,30)Family Emotional Stress 15 45.67 30.05 62.00 21.20 73.33 23.95 ***11.45(2,28)Family Physical Impact 14 51.49 28.10 71.13 24.86 74.40 27.78 **4.82(2,26)Family Relationships 14 52.50 30.24 67.14 17.73 69.29 24.72 **4.64(2,26)Family Social Functioning 15 64.17 26.14 78.33 19.17 85.00 19.74 ***7.85(2,28)Family Worry and Anxiety 14 45.35 27.97 63.21 21.18 71.79 17.61 **7.08(2,26)

F-COPESFamily’s ability to seek out help and support 15 15.87 2.83 16.93 2.71 16.00 2.85 *3.28(2,28)Family’s Ability to Reframing Meaning 15 29.73 4.91 33.60 3.85 32.53 4.00 **5.46(2,28)

Medical Expenses Incurred Pre and Post MEND

Pre MEND Post MENDPreliminary analysis of 21 families that recently received the MEND treatment.

On average, prior to MEND, families incurred $17,066 (sd = $26,318) in medical expenses within a 12 month timeframe. 12 months after MEND the total expenses reduced by 66% or $11,251.

Including the cost of MEND (21 IOP sessions = $5,300) the total medical expense reduction of $5,951. Which equates to a 35% reduction of medical expenses in the first 12 months.

Pilot Study: Major Effects

1. Reduces re-hospitalizations days from 10 times a month to less then 12. Reduces missed days of school from 12 days a month to less than 23. Reduces missed days of work form 9 days a month to less than 14. Improves fluid cognitive functioning (r2 = .53)5. Improves child’s physical, emotional and academic well-being (r2 = .24 - .36)6. Lessen the negative impact of the illness on the family (r2 = .37-.53)7. There is a cost benefit reduction of 66% in medical expenses

Preliminary Results from the Adult Program

• 22 families with an identified chronic illness have entered the study

• 11 families have graduated the program• 8 families have a 3 month post measurement

Preliminary Results from the Adult Program: Anxiety

F(3,53) = 3.15, p = .03

Preliminary Results from the Adult Program: Depression

F(3,53) = 5.84, p = .002

Preliminary Results from the Adult Program: General Health

T(14) = 2.38, p = .03

Contact: Program Developer and Clinical Lead: Daniel Tapanes - dtapanes@llu.edu

Principle Investigator: Brian Distelberg: - distelberg@llu.edu

Co-Investigator: Jackie Williams-Reade: jwilliamsreade@llu.edu

Question and Answer Period

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