Conversations with Teens their Families and Providers:Developing a Systemic Collaborative Approach for Managing Poorly

Controlled Type 1 Diabetes

Harold Starkman MDGloria Henriquez-Lopez LCSW

Nicole Pilek LCSWBD Diabetes Center

Goryeb Children’s HospitalMorristown, NJ

Collaborative Family Healthcare Association 14th Annual ConferenceOctober 4-6, 2012 Austin, Texas U.S.A.

Session #E3aOctober 5, 2012

Objectives

• After this presentation, the participant should be able to:– Identify barriers and challenges that affect the

management of adolescents with poorly controlled type 1 diabetes from an integrated systemic perspective.

– Explain how relationships between diabetic adolescents, their families and health care team affect home diabetes management.

– Present a new collaborative model for adolescent diabetes care which may have implications for improved management of other chronic medical conditions.

Faculty Disclosure

• The BD Diabetes Center High Risk Diabetes Project Is supported by grants from the HAPI Foundation and BD

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

Presentation

Overview of Study Population Project Goals and Methodology Family Interactions/Collaboration Collaboration between Patient/Family and

Diabetes Medical Team Collaboration of Medical Care Team with

Mental Health Providers Summary/Conclusions

Project Overview

There is a small but significant subgroup of children and adolescents with diabetes who have chronically elevated blood sugars

These patients account for over 80% of hospital re-admissions and emergency department visits.

This group is also at high risk for diabetes-related complications and early mortality.

Medical care for the high risk population accounts for a large proportion of diabetes-related health care costs.

This population is in many ways, an “orphan” population.

Historical Approaches to High Risk Diabetes Management

Structural Family Therapy (Minuchin) Educational/Support Groups Referral to Diabetes Camps Hospitalization (Cumberland) Motivational Interviewing Newer High Risk Intervention Programs

Multiphasic Therapies (Wysocki) with IncentivesFamily Educational/Parenting Skills

Reinforcement (Anderson)Psychosocial Screening at Diabetes Diagnosis

(Schwartz)

Limitations of Interventions

Limited “Buy In” from Patients & Their Families Lack of a Multi-Systemic Approach to Evaluation and

Treatment Intervention when poor blood sugar control has become

chronic and behaviors have become ingrained Sub-Optimal Long Term Outcomes Cost

What Makes Diabetes Different from Other Chronic Medical Disorders?

Complicated medical regimen Need knowledge base, effective family communication &

problem solving skills Diabetes affects all aspects of day to day living Child doesn’t look or act sick Diabetes doesn’t go away with treatment or over time. Poor blood sugar control can result in diabetic

complications, but there is no immediate negative feedback from elevated blood sugars.

Diabetes management is primarily the patient’s/family’s responsibility

Families As Experts (Frankael)

Data was collected from in-depth, semi-structured whole family interviews

Criteria for inclusion were 3 or more diabetes related hospitalizations within the preceding 18 months or HgbA1C >8.5% for over 6 months

Grounded Theory was incorporated as methodological framework

In view of the scope of our research questionnaire, we incorporated data analysis saturation (Glaser & Strauss 1967, Strauss& Corbin 1998) as a guide for trustworthiness.

Family Interview

Relational impact of diabetes care on the family. Stories of family prideFamily legacies related to medical experiencesRelational patterns surrounding diabetes tasks Transition of tasks from parents to teen’s

controlDiabetes care team/family relationship

Study Methods

49 “high risk” families were invited to participate 23 (47%) were interviewed; 26 families (53%) declined.

Interviews were videotaped and reviewed by 2 social workers and a pediatric endocrinologist

Themes were coded for analysis using Transana 2.41, a qualitative software package.

After the initial interview, families were offered short term family intervention, at no cost

Baseline and Outcome Parameters

Epidemiologic (age, ethnicity, SES) Diabetes (age of onset, duration, HgbA1C) Outcome Parameters (re-admissions, HgbA1C)

Demographics of Study Population

13 females and 10 males Average Age: 15.2 +/- 1.8 years (range 12-18) Average Diabetes Duration:7.0+/-4 years (range 2-14 ) Average HgbA1C: 10.4+/-1.5 % (range 8.5-14) Race /Ethnicity

4 Latino 15 Caucasian 2 African American 2 Asian

Demographics-2

Annual Income 8 Families earn >$150,000 1 Family earns between $100,000 and $150,000 5 Families earn between $75,000 and $100,000 4 Families earn between $24,000 and $75,000 4 Families earn <$24,000 1 Families elected not to provide their income

Family Health History In 15 out 23 (65.2%) of families, an immediate family

member suffers from a chronic medical condition Religious Practice

15 out of 23 (65.2%) families are actively involved

Family Interview Themes

High Risk Family InterviewsKey Themes

There are many factors that can contribute to poorly controlled diabetes.

Families often struggle to “do their best”, even if their best does not translate into optimal diabetes management.

“No human being is constituted to know the truth, the whole truth, and nothing but the truth; and even the best of men must be content with fragments, with partial glimpses, never the full fruition”

William Osler MD

Psychosocial Stressors Unknown to Medical Providers Revealed In Family Interviews

Parental Chronic Illness Marital/ Parental Conflict Undiagnosed Depression and Other

Psychiatric Issues Issues related to SES (underinsurance,

poverty, discrimination based on race, gender etc.)

History of Sexual Abuse Parental Substance Abuse

PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS WITH POORLY CONTROLLED DIABETES

FEELING BEHAVIOR BEHAVIOR FEELINGFrustratedInadequate

Helpless Hopeless

AngryGuilty

DefensiveUnder Involved

Withdrawn Distant SilentAvoid

Disengage

FrustratedInadequate

HelplessHopeless

AngryMisunderstood

AlienatedJudgedAfraidGuilty

Over InvolvedCriticizeShameAvoid

Disengage DM

DefensiveUnder Involved

Withdrawn Distant SilentAvoid

Disengage

FEELING

FrustratedInadequate

HelplessHopeless

AngryMisunder-stood

AlienatedJudgedAfraidGuilty

BEHAVIORFEELING BEHAVIOR

FrustratedInadequate

Helpless Hopeless

AngryGuilty

Over InvolvedCriticizeShameAvoid

Disengage

DM

A Closer Look at the Family Dynamics around Diabetes

Interview Questions

How does the family organize itself to manage diabetes tasks? How do family members feel about

diabetes tasks and the interactions related to completing these tasks?

What conflicts occur related to diabetes management?

Relational Family Patterns Related to Diabetes Care: Dyadic Conflict

Mother Father

Child

Mother Father

Child11.5% 7.7%

Relational Family Patterns Related to Diabetes Care:Triadic Conflict

Mother Father

Child

Mother Father

Child

Mother Father

Child(34.6%) (19.2%) (15.4%)

Relational Family Patterns Related to Diabetes Care: Disengagement

Mother Father

Child

(11.6%)

Family Collaboration, Conflict and Disengagement:

A Continuum.

Families and individual family members struggle to “do their best”, even if their best does not translate into optimal diabetes management.

Different perspectives on “doing one’s best” result in tensions among family members that frequently evolve into intense conflicts.

The higher the intensity of the conflict, the lower the possibility of effective family collaboration around diabetes care and vice versa.

The demands of diabetes care added to an already overstressed family often overwhelms the capability of the system. Family members then give up “doing their best” and disengage from diabetes care.

PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS WITH POORLY CONTROLLED DIABETES

FEELING BEHAVIOR BEHAVIOR FEELINGFrustratedInadequate

Helpless Hopeless

AngryGuilty

DefensiveUnder Involved

Withdrawn Distant SilentAvoid

Disengage

FrustratedInadequate

HelplessHopeless

AngryMisunderstood

AlienatedJudgedAfraidGuilty

Over InvolvedCriticizeShameAvoid

Disengage DM

“Oh God, I am about to hear these people (medical team) telling me what I am not doing, so I guess that’s the way my daughter feels sometimes when she says that I don’t understand that she is trying her best to take care of diabetes. I also get frustrated when they, (the medical team),doesn’t understand that I am trying my best”

Corema .- Mother of a 14 year old girl, diagnosed

with diabetes six years previously ,and repeatedly

hospitalized for 6 months previous to the interview.

JH

Janie is a 12 year old girl who developed diabetes at age 8 years. Her blood sugars have been poorly controlled in spite of multiple regimen adjustments and educational interventions.

JH EDIT 2.wmv

Provider Interviews

Each member of the BD Diabetes Center medical care team participated in a semi- structured interview. Questions were focused on past personal and professional experiences with chronic disease as well as their beliefs related to the management of adolescents with poorly controlled diabetes.

Demographics-Medical Care Providers

Diabetes Care Team 6 Pediatric Endocrinologists 4 Nurses (3 NP’s 1 RN) 1 Registered Dietitian

Gender 2 males (both physicians) 9 females

Ethnicity 8 Caucasian 3 Asian (physicians)

No provider has a family history of type 1 diabetes

Families felt that..... Providers felt…..

Providers often underestimate their commitment to caring for diabetes on a day to day basis.

That teens and their families “don’t care” about their diabetes and “aren’t trying”.

Providers are often unaware of the challenges of caring for diabetes.

“Like a broken record” when working with teens with chronically elevated blood sugars and their families.

Providers often do not recognize the need for continued family support.

Puzzled as to why some families consistently come to visits, when it is clear that management recommendations are not being followed.

Families are often not treated as equal partners by their providers.

That families are not “keeping their side of the bargain”.

They are being judged by providers, especially when diabetes is not going well.

“Frustrated” and “like a failure” when they have “run out of options” after trying multiple unsuccessful therapeutic interventions.

DIFFERING PERCEPTIONS OF FAMILY & DIABETES CARE PROVIDERS

Provider/Family Interactions When Diabetes Is Not Going Well

FEELINGS FEELINGS

BEHAVIORS BEHAVIORS FrustratedInadequate

HelplessHopeless

AngryMisunderstood

AlienatedJudgedAfraidGuilty

DIABETES HEALTH CARE

TEAM

FAMILY

DefensiveUnder

InvolvedWithdrawn

Distant SilentAvoid

Disengage

Over InvolvedCriticizeShameAvoid

Disengage

FrustratedInadequate

Helpless Hopeless

AngryGuilty

Family/Medical Team Collaboration

Diabetes care providers are limited by the classical medical approach, and often only have a limited perspective of their patients and their families

Dynamics between families and diabetes care providers often mirror family dynamics related to diabetes management

Repeating negative interactions often result in disengagement of both the family and medical provider. resulting in missed visits and eventual drop out from follow up.

PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS WITH POORLY CONTROLLED DIABETES

FEELING BEHAVIOR BEHAVIOR FEELINGFrustratedInadequate

Helpless Hopeless

AngryGuilty

DefensiveUnder Involved

Withdrawn Distant SilentAvoid

Disengage

FrustratedInadequate

HelplessHopeless

AngryMisunderstood

AlienatedJudgedAfraidGuilty

Over InvolvedCriticizeShameAvoid

Disengage DM

Short Term Family Intervention

Of 23 families who completed a diagnostic interview 16 (69.6%) returned for the family intervention

Some families required referral for longer term treatment and/or more intensive/ specialized intervention (medication, couples issues, drug dependency etc.)

Outcomes data related to the short and long term efficacy of our therapeutic intervention are being collected and analyzed.

DefensiveUnder Involved

Withdrawn Distant SilentAvoid

Disengage

FEELING

FrustratedInadequate

HelplessHopeless

AngryMisunder-stood

AlienatedJudgedAfraidGuilty

BEHAVIOR

FrustratedInadequate

Helpless Hopeless

AngryGuilty

FEELING BEHAVIOR

Over InvolvedCriticizeShameAvoid

Disengage

DM

Physician

Diabetes Nurse Educator

Diabetes Social Worker

Dietitian

Family Therapist

Psychiatrist

Psychologist/Social Worker

A Closer Look at the Diabetes Care Team

CONFLICT

CONFLI

CT

CO

NFLIC

T

CONFLICT

PhysicianNurse

Dietitian

Diabetes Team Social

Worker

CommunityCounselor

Psychiatrist

Traditional Communication Matrix When Working With High Risk Families

Interventions to Improve Medical/Mental Health Collaboration

The medical diabetes care team was encouraged to observe a series of family interviews to improve interviewing skills and better understand family dynamics

Procedures for referral to our High Risk Program were simplified

Updates for families participating in the High Risk Program were shared and discussed at monthly diabetes management meetings.

Improving Communication: Closing the Loop

Mental Health

Provider

FAMILY

Diabetes Medical Health Team

Mental

Health

Provider

TEEN

TEEN

Mental Health

Professional

Family

Medical Professional

Medical Team Comments Related to High Risk Intervention Program

“I’m sending you a high risk family to fix .” “”The parents are unfit . Can you place John in a group

home?” “You’ve been seeing this family for 3 months. Things

aren’t any better. Remember, this patient may die from her high sugars”

“I still don’t know what’s going on at Sue’s counseling sessions.”

How come my patient hasn’t returned for medical follow- up for over 9 months?”

Why are we applying for funding for high risk diabetic patients when the money might fund something more cost efficient?”

TEEN

Medical Professional Mental Health Professional

Crisis Mode

Family

Family

Medical Professional

Mental Health

Professional

TEEN

Medical Professional Mental Health Professional

Crisis ModeFamily

Collaboration Is Not For Sissies

Potential Collaborative Barriers From the Medical Team’s Perspective

Differing professional cultures Hierarchal vs. collaborative relational approach Different knowledge base and perspective Lack of understanding of the psychotherapeutic

process Liability Risks Ambivalence about referring:

Referring the patient can be seen as a failure Template for sharing patient care is poorly

defined

Potential Collaborative Barriers from the Mental Health Provider’s Perspective

Additional complexity/risk engendered medical diagnosis

Mental health provider is on “medical turf” Historical hierarchal nature of professional

interaction Pressure to “fix” from medical team Medical providers’ “unrealistic expectations

and overestimation of mental health resources

Recommendations:Medical/Mental Health Provider

Collaboration:

Recommendations: Build diabetes knowledge base of mental health providers Build family dynamic knowledge base of medical providers Reframe role of mental health professional as the “relational

repair expert” as opposed to the “diabetes fixer” Incorporate mental health provider expertise from time of

diabetes diagnosis Recognize the need for ongoing dialog between diabetes

and mental health providers

Neither medical nor mental health providers independently can be effective agents of change for

high risk diabetes families

Conclusions

Strained relationships between families their medical and mental health providers are often associated with sub-optimally controlled diabetes.

At times of crisis, collaboration within the family, between the family and medical team and between the medical and mental health provider is crucial, yet often difficult to achieve.

Sub-optimal collaboration at any level often reverberates throughout the whole system.

We hypothesize that positive intervention at any level of the system may improve both diabetes management and family functioning.

TEEN

Mental Health

Professional

Family

Medical Professional

…Crisis

TEEN

Mental Health

Professional

Family

Medical Professional

…Crisis

Ideal

---Thank You ----Questions

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