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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 - PowerPoint PPT Presentation
Citation preview
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
CONFLIC
T CONFLICT
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
Mental
Health
Provider
TEEN
TEENMental 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.
TEENMental Health
Professional
Family
Medical Professional
…Crisis
TEENMental Health
Professional
Family
Medical Professional
…Crisis
Ideal
---Thank You ----Questions
Session Evaluation
Please complete and return theevaluation form to the classroom monitor
before leaving this session.
Thank you!