Type 1 Diabetes and the Family:Strategies for Success

Jan 2009

Susan J. Clark, M.D.Susan J. Clark, M.D.

Children’s Hospital of Orange CountyChildren’s Hospital of Orange County

Joe Solowiejczyk R.N., C.D.E.M.S.W.Joe Solowiejczyk R.N., C.D.E.M.S.W.

LifeScan, Inc.LifeScan, Inc.

Diabetes Mellitus Type 1

Goals of TherapyGoals of Therapy Normal growthNormal growth Emotional well-Emotional well-

beingbeing Feels wellFeels well ““Normal life”Normal life” Control symptomsControl symptoms Prevent Prevent

complicationscomplications

Diabetes Mellitus Type 1

ManagementManagement Skills Skills DietaryDietary Glucose monitoringGlucose monitoring SQ insulin SQ insulin

injectionsinjections

DM1 Management

Manage Manage (not control) (not control) blood glucoseblood glucose

Goal: BG 80-180Goal: BG 80-180 Children at risk for severe Children at risk for severe

hypoglycemiahypoglycemia Check BG 4+ times dailyCheck BG 4+ times daily BG - BG - NOTNOT bad or good bad or good BG levels varyBG levels vary

Throughout the dayThroughout the day From day to dayFrom day to day

Diabetes Mellitus Type 1

Diabetes management programDiabetes management program Depends on the Depends on the ageage of the child/teenof the child/teen Must be Must be individualizedindividualized to the child/teen to the child/teen Must be developed by the diabetes team Must be developed by the diabetes team

to to fit the lifestylefit the lifestyle of the child and family of the child and family Must be Must be flexibleflexible to variations in daily to variations in daily

routine: sports, parties, holidays, routine: sports, parties, holidays, weekends, vacations etcweekends, vacations etc

Hemoglobin A1c

HgbA1cHgbA1c <5 years old<5 years old

7.5-8.9%7.5-8.9% 5-11 years old5-11 years old

<8%<8% 12 + years old12 + years old

<7.5%<7.5%

Diabetes Complications

AcuteAcute HypoglycemiaHypoglycemia Diabetic KetoacidosisDiabetic Ketoacidosis

Chronic / long termChronic / long term MacrovascularMacrovascular – heart attack, stroke – heart attack, stroke Microvascular Microvascular – retinopathy, – retinopathy,

nephropathy, neuropathynephropathy, neuropathy

DM1- Developmental Goals

School AgeSchool Age (K-6)(K-6) – need supervision– need supervision More independence, no judgment More independence, no judgment ““Go by the rules”Go by the rules”

Goals (K-4) Goals (K-4) Beginning DM management skillsBeginning DM management skills Learning to use the BG meterLearning to use the BG meter Cooperative with shots/ choosing sitesCooperative with shots/ choosing sites Participates in choosing foodParticipates in choosing food

DM1 – Developmental Goals

School Age (5-6 grade)School Age (5-6 grade) – need supervision– need supervision Independent with BG tests but require Independent with BG tests but require

supervision of BG numberssupervision of BG numbers Reads labels: knows carbohydrates, Reads labels: knows carbohydrates,

protein, and free foodsprotein, and free foods Reports symptoms of low BGReports symptoms of low BG Partners with parents evaluating BG Partners with parents evaluating BG

levels and deciding food and snackslevels and deciding food and snacks

DM1 - Development

Middle School (7-8 grade)Middle School (7-8 grade) Starting pubertyStarting puberty Beginning to develop social skills Beginning to develop social skills Peers very important (compared to Peers very important (compared to

parents)parents) Beginning to want some independenceBeginning to want some independence Do not want to be different than peersDo not want to be different than peers

DM1 – Developmental Goals

Middle School (7-8Middle School (7-8thth grade) grade) – requires close – requires close supervision from parentssupervision from parents Skilled at carb counting and label readingSkilled at carb counting and label reading Consistently takes BG without promptingConsistently takes BG without prompting Consistently takes shots or boluses pumpConsistently takes shots or boluses pump Partners with parents on evaluating BG Partners with parents on evaluating BG

levels and deciding food and snackslevels and deciding food and snacks

DM1 – Developmental Stage

Adolescent Adolescent – STILL needs supervision– STILL needs supervision Craves independence Craves independence Responsibility and judgment variable Responsibility and judgment variable Begins to face adult life with diabetes Begins to face adult life with diabetes

Goals Goals – Progressive Independence– Progressive Independence Partners with parents in problem solvingPartners with parents in problem solving Communicates with diabetes teamCommunicates with diabetes team

DM1- Development

SiblingsSiblings Blame themselves for sibling developing Blame themselves for sibling developing

diabetesdiabetes Feel left out (not special)Feel left out (not special) Feel jealous or resentful Feel jealous or resentful Gets less attention from parentsGets less attention from parents Sibling with DM “Gets away with Sibling with DM “Gets away with

murder”murder”

Solutions Depend Upon How You Define the Problem!

Individual ApproachIndividual Approach

Family ApproachFamily Approach

Individual Approach

Problem defined: Problem defined: non-compliance, mismanagement and poor non-compliance, mismanagement and poor

metabolic controlmetabolic control Causes: Causes:

lack of acceptance, anger, loss of control, lack of acceptance, anger, loss of control, poor self concept, low self-esteem, denialpoor self concept, low self-esteem, denial

Family Approach: with Children

Intervention strategies focus on changing the Intervention strategies focus on changing the familyfamily context and structurecontext and structure where these behaviors occur and are reinforcedwhere these behaviors occur and are reinforced

Problem caused by personal feelings AND dysfunctional patterns of Problem caused by personal feelings AND dysfunctional patterns of communication, interaction and “low” behavioral expectationscommunication, interaction and “low” behavioral expectations

Child

Mother Father

The

Family is

the Patient

Solowiejczyk, J, Diabetes Spectrum Volume 17, Number 1, 2004

Assessment For Family Functioning:Pediatrics

Family emotional supportivenessFamily emotional supportiveness Between parents -- are mother and father emotionally Between parents -- are mother and father emotionally

available to each other?available to each other? Availability -- is there flexibility with daily schedules?Availability -- is there flexibility with daily schedules?

Family organizationFamily organization Joint decision making -- between spousesJoint decision making -- between spouses Value congruence -- between spousesValue congruence -- between spouses Communications patterns -- are messages about rules Communications patterns -- are messages about rules

clear or confusing?clear or confusing? Competence/effectivenessCompetence/effectiveness

Response to initial symptomsResponse to initial symptoms

Baker, Rosman, Nogueira, Sargent; Unpublished research data, 1979

Intervention Principles: Pediatrics

Expanded definition of “patient” includes whole Expanded definition of “patient” includes whole family; you should see the whole family for at family; you should see the whole family for at least 1 sessionleast 1 session

Reframing non-compliance and mismanagement Reframing non-compliance and mismanagement as as misbehaviormisbehavior

Relate child’s misbehavior to parents’ inability to Relate child’s misbehavior to parents’ inability to agree on how to handle itagree on how to handle it

Appropriate diabetes management is non-Appropriate diabetes management is non-negotiablenegotiable

Solowiejczyk, J, Diabetes Spectrum Volume 17, Number 1, 2004

THANK YOU!