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Monogenic Diabetes: Facilitating Family Resilience John S. Rolland, M.D., MPH

Monogenic Diabetes: Facilitating Family Resilience John S. Rolland, M.D., MPH University of Chicago Pritzker School of Medicine jrolland@uchicago.edu Chicago Center for Family Health www.ccfhchicago.org.

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Monogenic Diabetes: Facilitating Family Resilience John S. Rolland, M.D., MPH

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  1. Monogenic Diabetes: Facilitating Family Resilience John S. Rolland, M.D., MPH University of Chicago Pritzker School of Medicine jrolland@uchicago.edu Chicago Center for Family Health www.ccfhchicago.org

  2. DiabetesThe Uninvited Family GuestKeeping Diabetes in its PlaceStrengthening the Family

  3. Resilience • Ability to withstand and rebound from major life challenges, like diabetes, strengthened and more resourceful. • “Bounce forward” • Adapt to changing illness demands over time; Creating a “new normal”

  4. Diabetes & the Family • Family as a key resource & partner in care • Diabetes and related stresses affect family life, all members and relationships • Family can influence treatment adherence & disease course

  5. Function and Dysfunction What is the fit between your family’s strengths and vulnerabilities and the demands of diabetes over time?

  6. Need for Family Psychosocial Map • Family functioning: Beliefs, organization, communication • Psychosocial understanding of specific type of monogenic diabetes • Understanding developmental issues

  7. Family Consultations • Prevention-oriented • At crucial transitions • “Psycho-social Check-ups”

  8. Key Issues • Define Challenge of Diabetes in shared "WE" Terms • Establish Functional Collaborative Relationship with Health Care Providers

  9. Communication Who will be included or excluded and why? What topics are off-limits and why? Communication with Children & Adolescents No evidence kids hurt by age-appropriate info. Gradual approach associated with less problems in Adolescents. Blocked communication associated with isolation, anxiety, depression for all members.

  10. Gender • How does gender affect how family assigns roles (parents, siblings, extended family)? • Opportunity to consider positive aspects of untried roles

  11. Ethnic & Cultural Beliefs • Kind & Degree of Open Communication • Who is in Caretaking System • “Sick Child” role • Control

  12. LONG-HAUL CHALLENGES • Maximize Independence for all Family Members • Minimize Relationship Imbalances • Mindfulness to Possible Impact on Current and Future Developmental Phases of Family and Individual members From: Rolland, J. S. Families, Illness, & Disability: An Integrative Treatment Model,New York: Basic Books, 1994.

  13. Diabetes Child–Caregiver roles • What can be done by child with diabetes? • What needs family caregiver? • What needs professional caregiver ?

  14. Healthy Boundaries“Keeping Diabetes in its Place” • Risk: Illness becomes all of relationship • Try to arrange times to discuss diabetes-related issues • Try to preserve parts of “home” that are off-limits to diabetes-related care (e.g. Living room, Bedroom)

  15. Siblings • Risk of becoming the “Forgotten family member” • Anger • “Wellness guilt” • Fear of own or other family members’ vulnerability • Resilience

  16. Family Developmental Perspective with Diabetes • Individual and family development • Prior experience with illness & loss, including stories of resilience • Current timing • Impact on future individual and family life planning

  17. Key Questions: • How did your family organize itself in response to prior illness, loss, & crisis, and how did this system evolve over time? • What did family members learn from those experiences? • What are learned differences among key family members?

  18. Development • Need to understand phase of development of each family member, the family, and diabetes in relation to each other • Provides way to organize thinking about life planning over time. • Highlights key transitions

  19. Family Life Cycle Stages • Single young adult • New married couple • Family with young children • Family with adolescents • Launching children • Family in later life • Carter & McGoldrick (2011)

  20. Family & Personal Transitions • e.g. birth, leaving home, marriage, starting a family, genetic testing or diagnosis of another family member • At these times, uncertainty about diabetes can surface • What developmental plans are delayed, need to be altered, are blocked, or may need to be let go of? Why?

  21. Family Beliefs Challenge: Family create meaning for Diabetes experience that promotes competency and mastery

  22. Family Identity Diabetic child or family vs. Child or family with diabetes

  23. Beliefs about Normality • How would “Average” family cope & adapt? • How would “Optimal” family cope & adapt? • Beliefs about role of stress and wellbeing, including family dynamics, in diabetes

  24. Beliefs about Cause of Diabetes • Blame of Self, Family Member, or Family Unit • Genetic link to a Parent • Injustice (“Why me, I’ve been a good person”)

  25. Beliefs about Course of Diabetes • Rigid control of biology “We have to beat diabetes!” • Flexible participation over time “We will do everything we can to master diabetes.”

  26. Family Discussion Groups & Educational Days • Key psychosocial challenges addressed • Decrease isolation and increase networking of families dealing with same issues.

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