Compassionate Care in a Challenging Culture: Family dynamics and social issues

1. Compassionate Care in a Challenging Culture: Family dynamics and social issues Cassandra Aspinall, MSW, LICSW Children’s Hospital & Regional Medical Center. Craniofacial Center Seattle, Washington

2. Integrating many worlds • Normal expectations of health, individual and family • Normal expectations of illness and medical treatment • Altered expectations resulting from health changes

3. Appreciating our world • Remembering that we have normalized and are comfortable with crisis inducing circumstances • Speed and volume of our work may cause us to expect quicker adjustments from patients and families. • Such thinking can lead to faulty support to families and impact decision making and individual development

4. Identity development • An individual journey • Made within specific contexts • Family • Community/local • Community/society

5. Complicated by existence of differences • Erving Goffman,PhD • Stigma: Notes on the management of a spoiled identity, 1963 • The process of reconciling someone’s virtual social identity with their actual social identity • Others sense of who someone is, will be triggered by attributes that are not readily understood

6. Family context • Hopes • Dreams • Fears • Expectations • Each parent, each couple • Child as developing person

7. “Normal” development • Solitary play (young toddlers) • Parents worry about differences, but children rarely notice • Parallel play (preschool) • Children play next to other children but not really “with them” • Group play (early school age) • Children begin to develop connections with others

8. New educational surroundings • Entering a school/daycare environment • Exposure to other children and their families • “Bracing” for the reaction and planning for protection from negative interactions

9. Avoiding fear based supports • Reinforce normal development and the child’s world • Discuss directly the adult parent’s worry and talk openly about the fact that parents will have concerns about differences long before their young children do • Help parents to differentiate between the their worry and their child’s worry

10. Avoiding “mixed contacts” • Protecting the child by arranging life in order to avoid exposure • A “protective capsule” may be developed to control discovery • Can lead to “defensive cowering” and destructive isolationism • Discovery of the reality can lead to a “spoiled identity” where a person is discredited and considers acceptance to not be possible E. Goffman, Stigma 1963

11. Regular support/activities • School • Sports • Music • Social opportunities

12. Additional tasks related to diagnosis • Completion of treatments • Participation in additional assessments • Consideration of life enhancing treatments

13. Craniofacial specifics • Physical tasks • Psychological tasks • Awareness by others of differences begins to influence a sense of self-consciousness • Creates a tension between treating those who are different as normal and recommending treatments that promise to erase the difference and stigma

14. Appearance related surgery • Lip and nose revisions • Timing • Before a child enters school? • After a child can participate in decision making?

15. Dental changes • An important difference that children will notice • Impact on smiling • Often children feel that if they smile it “ruins” things

16. Speech changes • Children’s interest in talking is not affected • Ability to be understood can be compromised

17. Whose opinion matters most? • What sort of life is the child developing? • What sort of future does the parent support/envision? • How is information shared? • How does this influence how decisions are made?

18. What influences should be considered? • General societal messages • Understanding these can help to understand what motivates patients and families • Taking time to understand how a family operates, will also add to understanding motivation

19. Surgically Shaping ChildrenEditedby Erik Parens, Hastings Ethics Center • Technology, ethics & the pursuit of normality • Combines the voices of patients, providers & philosophers • Intended to open up a dialogue & challenge established thinking & practice in the area of pediatric surgical care

20. Do I Make you Uncomfortable? Reflections on Using Surgery to Reduce the Distress of Others • Parents & children deserve the chance to really understand the motivation for surgical treatment. What is the problem that is being treated? Whose problem is it? Who will benefit?

21. Who Should Decide and How? • Demands that we recognize and challenge our assumptions about children and parents • Concludes that the only just conclusion is that children’s views and decisions need to be respected Priscilla Alderson

22. The Power of Parents & the Agency of Children • Reminds us to be aware of how cultural narratives lead to prescriptive parenting • Reviews 3 key concepts related to the issue of stigma, shame and acceptance • Lucidity: the world doesn’t always bend to our will • Integrity: preserving one’s moral self day to day, in good times & bad • Grace: living with what cannot be fixed H. Lindemann

23. Appearance-Altering Surgery, Children’s Sense of Self & Parental Love • Expresses concern that surgery changes the person to fit the world, when the world needs to adapt to the person • Surgery cannot deliver love and acceptance • More effective interventions need to be considered Adrienne Asch

24. What to Expect When You Have the Child You Weren’t Expecting • Unconditional love = doing everything for your kids • If you send a child into the world with an untreated “defect” will this lead to suffering & shame? Alice Domurat Dreger

25. Do you really understand the family environment? • Which “cultural narratives” are important to them? • How do they interpret the presence of the condition? • How does this influence the decisions they will make to change or not change their child?

26. Do you understand your team’s social environment? • Teams have members that inter-relate and establish group process dynamics • Similar to family dynamics they can be functional and dysfunctional • Awareness of dysfunction is key to protecting patients and safeguarding access to honest, open communication

27. Helping patients develop an understanding of themselves • Work with young patients involves a sacred trust • You are not only providing intermittent care • You are participating and influencing their development

28. “Going with the flow” • Development is not static • Understanding that it is okay to ask developing patients their opinions • Avoiding asking the patient questions because you are afraid of their answers is not acceptable

29. Thank you!!