Type 1 Diabetes and the Family: Strategies for Success Jan 2009 Susan J. Clark, M.D. Children’s Hospital of Orange County Joe Solowiejczyk R.N., C.D.E.M.S.W. LifeScan, Inc.

Diabetes Mellitus Type 1 Goals of Therapy Goals of Therapy  Normal growth  Emotional well- being  Feels well  “Normal life”  Control symptoms  Prevent complications

Diabetes Mellitus Type 1 Management Skills Management Skills  Dietary  Glucose monitoring  SQ insulin injections

DM1 Management Manage (not control) blood glucose Manage (not control) blood glucose Goal: BG Goal: BG Children at risk for severe hypoglycemia Children at risk for severe hypoglycemia Check BG 4+ times daily Check BG 4+ times daily BG - NOT bad or good BG - NOT bad or good BG levels vary BG levels vary  Throughout the day  From day to day

Diabetes Mellitus Type 1 Diabetes management program Diabetes management program  Depends on the age of the child/teen  Must be individualized to the child/teen  Must be developed by the diabetes team to fit the lifestyle of the child and family  Must be flexible to variations in daily routine: sports, parties, holidays, weekends, vacations etc

Hemoglobin A1c HgbA1c HgbA1c  <5 years old  %  5-11 years old  <8%  12 + years old  <7.5%

Diabetes Complications Acute Acute  Hypoglycemia  Diabetic Ketoacidosis Chronic / long term Chronic / long term  Macrovascular – heart attack, stroke  Microvascular – retinopathy, nephropathy, neuropathy

DM1- Developmental Goals School Age (K-6) – need supervision School Age (K-6) – need supervision  More independence, no judgment  “Go by the rules” Goals (K-4) Goals (K-4)  Beginning DM management skills  Learning to use the BG meter  Cooperative with shots/ choosing sites  Participates in choosing food

DM1 – Developmental Goals School Age (5-6 grade) – need supervision School Age (5-6 grade) – need supervision  Independent with BG tests but require supervision of BG numbers  Reads labels: knows carbohydrates, protein, and free foods  Reports symptoms of low BG  Partners with parents evaluating BG levels and deciding food and snacks

DM1 - Development Middle School (7-8 grade) Middle School (7-8 grade)  Starting puberty  Beginning to develop social skills  Peers very important (compared to parents)  Beginning to want some independence  Do not want to be different than peers

DM1 – Developmental Goals Middle School (7-8 th grade) – requires close supervision from parents Middle School (7-8 th grade) – requires close supervision from parents  Skilled at carb counting and label reading  Consistently takes BG without prompting  Consistently takes shots or boluses pump  Partners with parents on evaluating BG levels and deciding food and snacks

DM1 – Developmental Stage Adolescent – STILL needs supervision Adolescent – STILL needs supervision  Craves independence  Responsibility and judgment variable  Begins to face adult life with diabetes Goals – Progressive Independence Goals – Progressive Independence  Partners with parents in problem solving  Communicates with diabetes team

DM1- Development Siblings Siblings  Blame themselves for sibling developing diabetes  Feel left out (not special)  Feel jealous or resentful  Gets less attention from parents  Sibling with DM “Gets away with murder”

Solutions Depend Upon How You Define the Problem! Individual Approach Individual Approach Family Approach Family Approach

Individual Approach Problem defined: Problem defined:  non-compliance, mismanagement and poor metabolic control Causes: Causes:  lack of acceptance, anger, loss of control, poor self concept, low self-esteem, denial

Family Approach: with Children Intervention strategies focus on changing the family context and structure where these behaviors occur and are reinforced Intervention strategies focus on changing the family context and structure where these behaviors occur and are reinforced Problem caused by personal feelings AND dysfunctional patterns of communication, interaction and “low” behavioral expectations Problem caused by personal feelings AND dysfunctional patterns of communication, interaction and “low” behavioral expectations Child MotherFather The Family is the Patient Solowiejczyk, J, Diabetes Spectrum Volume 17, Number 1, 2004

Assessment For Family Functioning: Pediatrics Family emotional supportiveness Family emotional supportiveness  Between parents -- are mother and father emotionally available to each other?  Availability -- is there flexibility with daily schedules? Family organization Family organization  Joint decision making -- between spouses  Value congruence -- between spouses  Communications patterns -- are messages about rules clear or confusing? Competence/effectiveness Competence/effectiveness  Response to initial symptoms Baker, Rosman, Nogueira, Sargent; Unpublished research data, 1979

Intervention Principles: Pediatrics Expanded definition of “patient” includes whole family; you should see the whole family for at least 1 session Expanded definition of “patient” includes whole family; you should see the whole family for at least 1 session Reframing non-compliance and mismanagement as misbehavior Reframing non-compliance and mismanagement as misbehavior Relate child’s misbehavior to parents’ inability to agree on how to handle it Relate child’s misbehavior to parents’ inability to agree on how to handle it Appropriate diabetes management is non- negotiable Appropriate diabetes management is non- negotiable Solowiejczyk, J, Diabetes Spectrum Volume 17, Number 1, 2004

THANK YOU!