Conversations with Teens their Families and Providers_ Developing

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					Session #E3a
October 5, 2012


          Conversations with Teens their Families and Providers:
    Developing a Systemic Collaborative Approach for Managing Poorly
                       Controlled Type 1 Diabetes



                                Harold Starkman MD
                            Gloria Henriquez-Lopez LCSW
                                  Nicole Pilek LCSW
                                 BD Diabetes Center
                             Goryeb Children’s Hospital
                                   Morristown, NJ

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

x Overview of Study Population
x Project Goals and Methodology
x Family Interactions/Collaboration
x Collaboration between Patient/Family and
  Diabetes Medical Team
x Collaboration of Medical Care Team with
  Mental Health Providers
x Summary/Conclusions
Project Overview

  x There is a small but significant subgroup of children
    and adolescents with diabetes who have chronically
    elevated blood sugars
  x These patients account for over 80% of hospital re
    -admissions and emergency department visits.
  x This group is also at high risk for diabetes-related
    complications and early mortality.
  x Medical care for the high risk population accounts
    for a large proportion of diabetes-related health care
    costs.
  x This population is in many ways, an “orphan”
    population.
Historical Approaches to High
Risk Diabetes Management

  x Structural Family Therapy (Minuchin)
  x Educational/Support Groups
  x Referral to Diabetes Camps
  x Hospitalization (Cumberland)
  x Motivational Interviewing
  x Newer High Risk Intervention Programs
     xMultiphasic Therapies (Wysocki) with Incentives
     xFamily Educational/Parenting Skills
        Reinforcement (Anderson)
     xPsychosocial Screening at Diabetes Diagnosis
        (Schwartz)
Limitations of Interventions

x Limited “Buy In” from Patients & Their Families
x Lack of a Multi-Systemic Approach to Evaluation and
  Treatment
x Intervention when poor blood sugar control has become
  chronic and behaviors have become ingrained
x Sub-Optimal Long Term Outcomes
x Cost
What Makes Diabetes Different from
Other Chronic Medical Disorders?

x Complicated medical regimen
     x Need knowledge base, effective family communication &
       problem solving skills
x   Diabetes affects all aspects of day to day living
x   Child doesn’t look or act sick
x   Diabetes doesn’t go away with treatment or over time.
x   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)


x Data was collected from in-depth, semi-structured
  whole family interviews
x Criteria for inclusion were 3 or more diabetes related
  hospitalizations within the preceding 18 months or
  HgbA1C >8.5% for over 6 months
x Grounded Theory was incorporated as methodological
  framework
x 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

x Relational impact of diabetes care on the family.
        xStories of family pride
        xFamily legacies related to medical experiences
        xRelational patterns surrounding diabetes tasks
        xTransition of tasks from parents to teen’s
         control
        xDiabetes care team/family relationship
  Study Methods



x 49 “high risk” families were invited to participate
    x 23 (47%) were interviewed; 26 families (53%) declined.
x Interviews were videotaped and reviewed by 2 social
  workers and a pediatric endocrinologist
x Themes were coded for analysis using Transana 2.41, a
  qualitative software package.
x After the initial interview, families were offered short term
  family intervention, at no cost
Baseline and Outcome Parameters


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

x   13 females and 10 males
x   Average Age: 15.2 +/- 1.8 years (range 12-18)
x   Average Diabetes Duration:7.0+/-4 years (range 2-14 )
x   Average HgbA1C: 10.4+/-1.5 % (range 8.5-14)
x   Race /Ethnicity
    x 4 Latino
    x 15 Caucasian
    x 2 African American
    x 2 Asian
Demographics-2

x Annual Income
   x   8 Families earn >$150,000
   x   1 Family earns between $100,000 and $150,000
   x   5 Families earn between $75,000 and $100,000
   x   4 Families earn between $24,000 and $75,000
   x   4 Families earn <$24,000
   x   1 Families elected not to provide their income
x Family Health History
   x In 15 out 23 (65.2%) of families, an immediate family
     member suffers from a chronic medical condition
x Religious Practice
   x 15 out of 23 (65.2%) families are actively involved
Family Interview Themes
      High Risk Family Interviews
             Key Themes

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

x 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


x Parental Chronic Illness
x Marital/ Parental Conflict
x Undiagnosed Depression and Other
  Psychiatric Issues
x Issues related to SES (underinsurance,
  poverty, discrimination based on race, gender
  etc.)
x History of Sexual Abuse
x Parental Substance Abuse
   PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS
      WITH POORLY CONTROLLED DIABETES

                                           Contextual Influences




FEELING                             BEHAVIOR              BEHAVIOR             ily        and    FEELING
                         s                                                  am
 Frustrated
                   b ete     Ca
                               re
                                    Over Involved           Defensive      F                      Frustrated
                a                     Criticize           Under Involved                         Inadequate
Inadequate    Di                       Shame                Withdrawn                              Helpless
  Helpless
  Hopeless                              Avoid                Distant                               Hopeless
   Angry                             Disengage                Silent                                 Angry
                                                    IMPASSE                          DM
   Guilty                                                     Avoid                             Misunderstood
                                                            Disengage                             Alienated
                                                                                                    Judged
                     Team                                                      Patient               Afraid
                                                                                                     Guilty
        A Closer Look at the
         Family Dynamics
          around Diabetes
                                                                        FEELING
FEELING                        BEHAVIOR          BEHAVIOR

 Frustrated            Cs
                     ete are                     Defensive
                                                                       Frustrated

                  iab
                               Over Involved                          Inadequate
Inadequate                       Criticize     Under Involved           Helpless
  Helpless    D                   Shame         Withdrawn               Hopeless
  Hopeless                         Avoid  IMPASSE Distant                 Angry
   Angry                        Disengage          Silent            Misunder-sto
   Guilty                                          Avoid               Alienated
                                                 Disengage
                   Team                                                  Judged
                                                                          Afraid
                                                                          Guilty




                                                                DM
Interview Questions

x How does the family organize itself to manage
  diabetes tasks?
   x How do family members feel about
     diabetes tasks and the interactions related
     to completing these tasks?
   x What conflicts occur related to diabetes
     management?
 Relational Family Patterns Related to Diabetes Care:
                    Dyadic Conflict


Mother           Father          Mother           Father




                   11.5%                           7.7%
         Child                            Child
     Relational Family Patterns Related to Diabetes Care:
                        Triadic Conflict



Mother           Father       Mother           Father       Mother           Father




         Child      (34.6%)                       (19.2%)
                                       Child                         Child   (15.4%)
Relational Family Patterns Related to Diabetes Care:
                  Disengagement



                Mother           Father




                                          (11.6%)
                         Child
      Family Collaboration, Conflict and
              Disengagement:
               A Continuum.

x Families and individual family members struggle to “do
  their best”, even if their best does not translate into
  optimal diabetes management.
x Different perspectives on “doing one’s best” result in
  tensions among family members that frequently evolve
  into intense conflicts.
x The higher the intensity of the conflict, the lower the
  possibility of effective family collaboration around
  diabetes care and vice versa.
x 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

                                           Contextual Influences




FEELING                             BEHAVIOR              BEHAVIOR             ily        and    FEELING
                         s                                                  am
 Frustrated
                   b ete     Ca
                               re
                                    Over Involved           Defensive      F                      Frustrated
                a                     Criticize           Under Involved                         Inadequate
Inadequate    Di                       Shame                Withdrawn                              Helpless
  Helpless
  Hopeless                              Avoid                Distant                               Hopeless
   Angry                             Disengage                Silent                                 Angry
                                                    IMPASSE                          DM
   Guilty                                                     Avoid                             Misunderstood
                                                            Disengage                             Alienated
                                                                                                    Judged
                     Team                                                      Patient               Afraid
                                                                                                     Guilty
“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.

                              x 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

x Diabetes Care Team
    x 6 Pediatric Endocrinologists
    x 4 Nurses (3 NP’s 1 RN)
    x 1 Registered Dietitian
x Gender
    x 2 males (both physicians)
    x 9 females
x Ethnicity
    x 8 Caucasian
    x 3 Asian (physicians)
x No provider has a family history of type 1 diabetes
DIFFERING PERCEPTIONS OF FAMILY & DIABETES CARE PROVIDERS
          Families felt that.....                                Providers felt…..

Providers often underestimate their commitment That teens and their families “don’t care” about
to caring for diabetes on a day to day basis.  their diabetes and “aren’t trying”.


Providers are often unaware of the challenges of    “Like a broken record” when working with teens
caring for diabetes.                               with chronically elevated blood sugars and their
                                                   families.

Providers often do not recognize the need for      Puzzled as to why some families consistently come
continued family support.                          to visits, when it is clear that management
                                                   recommendations are not being followed.

Families are often not treated as equal partners   That families are not “keeping their side of the
by their providers.                                bargain”.


They are being judged by providers, especially     “Frustrated” and “like a failure” when they have
when diabetes is not going well.                   “run out of options” after trying multiple
                                                   unsuccessful therapeutic interventions.
Provider/Family Interactions When Diabetes Is Not Going
                          Well




               DIABETES
 FEELINGS     HEALTH CARE                           FAMILY    FEELINGS
                 TEAM
 Frustrated                 BEHAVIORS   BEHAVIORS              Frustrated
Inadequate                                                    Inadequate
  Helpless             Over Involved    Defensive               Helpless
  Hopeless               Criticize        Under                 Hopeless
   Angry                  Shame          Involved                 Angry
   Guilty                 Avoid         Withdrawn            Misunderstoo
                        Disengage         Distant                   d
                                           Silent              Alienated
                                           Avoid                 Judged
                                        Disengage                 Afraid
                                                                  Guilty
 Family/Medical Team Collaboration

x Diabetes care providers are limited by the
  classical medical approach, and often only
  have a limited perspective of their patients and
  their families
x Dynamics between families and diabetes care
  providers often mirror family dynamics related
  to diabetes management
x 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

                                           Contextual Influences




FEELING                             BEHAVIOR              BEHAVIOR             ily        and    FEELING
                         s                                                  am
 Frustrated
                   b ete     Ca
                               re
                                    Over Involved           Defensive      F                      Frustrated
                a                     Criticize           Under Involved                         Inadequate
Inadequate    Di                       Shame                Withdrawn                              Helpless
  Helpless
  Hopeless                              Avoid                Distant                               Hopeless
   Angry                             Disengage                Silent                                 Angry
                                                    IMPASSE                          DM
   Guilty                                                     Avoid                             Misunderstood
                                                            Disengage                             Alienated
                                                                                                    Judged
                     Team                                                      Patient               Afraid
                                                                                                     Guilty
Short Term Family Intervention

x Of 23 families who completed a diagnostic
  interview 16 (69.6%) returned for the family
  intervention
x Some families required referral for longer term
  treatment and/or more intensive/ specialized
  intervention (medication, couples issues, drug
  dependency etc.)
x Outcomes data related to the short and long
  term efficacy of our therapeutic intervention
  are being collected and analyzed.
                                                Diabetes
                                                Nurse
                                                Educator
                              Physician
                                                                   Dietitian
                                               CONFLICT
                                                                               BEHAVIOR
FEELING                                                                                         BEHAVIOR                      FEELING




                                                          CO
                                          CT
                                               Diabetes
                      Cs
                                        LI
                    ete are



                                                             N
                                                                               Over Involved
                                                                                                                     ya
                                                                                                                  mil nd
                                     NF
                                               Social




                                                            FL
                                                                                                 Defensive                   Frustrated
rustrated
                                   CO




                                                                 IC
                 ab                            Worker                            Criticize     Under Involved
                                                                                                                Fa
                                                                                                                            Inadequate




                                                                    T
            Di
adequate                                                                          Shame         Withdrawn                     Helpless
Helpless                                                                           Avoid          Distant                     Hopeless
Hopeless
 Angry
                                                                                Disengage
                                                                                         IMPASSE   Silent
                                                                                                                    DM
                                                                                                                                Angry
                                                                                                   Avoid                   Misunder-stood
 Guilty
                                        CONFLICT                                                 Disengage                   Alienated
                 Team                                                                                                          Judged
                                                                                                                 Patient        Afraid
                                                                                                                                Guilty
                                                   Psychiatrist


                               Family
                               Therapist

                                                 Psychologist/
                                                    Social
                                                   Worker




      A Closer Look at the Diabetes Care
      Team
   Traditional Communication Matrix When
       Working With High Risk Families


Physician      Diabetes       Community
                Team
 Nurse          Social         Counselor
Dietitian      Worker         Psychiatrist
     Interventions to Improve
Medical/Mental Health Collaboration

x The medical diabetes care team was
  encouraged to observe a series of family
  interviews to improve interviewing skills and
  better understand family dynamics
x Procedures for referral to our High Risk
  Program were simplified
x Updates for families participating in the High
  Risk Program were shared and discussed at
  monthly diabetes management meetings.
Improving Communication: Closing the Loop

                    Diabetes
                    Medical
                     Health
                      Team


                                      TEEN

                        I   LY
                    FAM



                                        tal
                                  MenHealth
                                     al
                                 Mentealth r
                                   H vide
                                   Pro er
                                   Provid
               Family




               TEEN
                          Mental
  Medical
                           Health
Professional
                        Professional
Medical Team Comments Related to
High Risk Intervention Program

x “I’m sending you a high risk family to fix .”
x “”The parents are unfit . Can you place John in a group
  home?”
x “You’ve been seeing this family for 3 months. Things
  aren’t any better. Remember, this patient may die from
  her high sugars”
x “I still don’t know what’s going on at Sue’s counseling
  sessions.”
x How come my patient hasn’t returned for medical
  follow- up for over 9 months?”
x Why are we applying for funding for high risk diabetic
  patients when the money might fund something more
  cost efficient?”
Crisis Mode
                                      Family




                                      Family




                                      TEEN
                                                 Mental
Medical Professional     Medical                              Mental Health
                                                  Health
                       Professional                            Professional
                                               Professional
Crisis Mode
                       Family




                       TEEN

Medical Professional            Mental Health
                                 Professional
Collaboration Is Not For Sissies
Potential Collaborative Barriers From
  the Medical Team’s Perspective

x Differing professional cultures
   x Hierarchal vs. collaborative relational approach
   x Different knowledge base and perspective
   x Lack of understanding of the psychotherapeutic
      process
   x Liability Risks
   x Ambivalence about referring:
        xReferring the patient can be seen as a failure
        xTemplate for sharing patient care is poorly
          defined
 Potential Collaborative Barriers from the
  Mental Health Provider’s Perspective


x Additional complexity/risk engendered medical
  diagnosis
x Mental health provider is on “medical turf”
x Historical hierarchal nature of professional
  interaction
x Pressure to “fix” from medical team
x Medical providers’ “unrealistic expectations
  and overestimation of mental health resources
               Recommendations:
          Medical/Mental Health Provider
                  Collaboration:

Recommendations:
   x Build diabetes knowledge base of mental health providers
   x Build family dynamic knowledge base of medical providers
   x Reframe role of mental health professional as the “relational
     repair expert” as opposed to the “diabetes fixer”
   x Incorporate mental health provider expertise from time of
     diabetes diagnosis
   x 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

x Strained relationships between families their medical
  and mental health providers are often associated with
  sub-optimally controlled diabetes.
x 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.
x Sub-optimal collaboration at any level often
  reverberates throughout the whole system.
x We hypothesize that positive intervention at any level of
  the system may improve both diabetes management
  and family functioning.
                                       …Crisis

               Family




               TEEN
                          Mental
  Medical
                           Health
Professional
                        Professional
 Ideal         Family


                        …Crisis




               TEEN
                            Mental
  Medical
                             Health
Professional
                          Professional
---Thank You
       ----Questions
      Session Evaluation
    Please complete and return the
evaluation form to the classroom monitor
       before leaving this session.
           Thank you!

				
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