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Monogenic Diabetes: Building Family Resilience for Managing the Uninvited Guest

Learn how families can strengthen resilience in facing the challenges of monogenic diabetes. Discover ways to improve communication, set healthy boundaries, and navigate the impact on family dynamics. Explore the role of family beliefs, ethnic and cultural considerations, and long-term challenges in diabetes management.

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Monogenic Diabetes: Building Family Resilience for Managing the Uninvited Guest

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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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