Collaborative Family Healthcare Association 18 th Annual Conference

1. Session # C3a October 14, 2016 Spanning Systems, Bridging Relationships: Collaborative Family Healthcare in Primary and Specialty Settings for Complex Chronic Illnesses Part I: Collaborative Family Healthcare with Children: Childhood and Parental Illness Collaborative Family Healthcare Association 18th Annual Conference October 2016 Charlotte, North Carolina U.S.A.

2. John Rolland, MD, MPH Professor of Psychiatry & Behavioral Sciences Northwestern University Feinberg School of Medicine Executive Co-Director, Chicago Center for Family Health Jackie Williams-Reade, Ph.D., LMFT Associate Professor School of Behavioral Health Loma Linda University

3. Faculty Disclosure The presenters of this session have NOT had any relevant financial relationships during the past 12 months.

4. Learning ObjectivesAt the conclusion of this session, the participant will be able to: • Identify the unique clinical needs of parents and children when a family member has a chronic, complex illness, specifically childhood cancer. • Learn how to help engage and intervene with family members through frameworks and evidence-based assessments and interventions. • Understand differences in care at the primary and specialty care levels and the importance of collaboration between settings

5. The Number of Americans with Chronic Conditions is Expected to Rise

6. The Shrinking Pool of Potential Caregivers

7. Illness and Disability in Family Context • Family, broadly defined, as the psychological and caregiving focal point • Family as a key resource & partner in care • Illness and related stresses affect family life, all members and relationships • Mutual influence between illness & family • Family organization and processes can influence treatment adherence & disease course

8. Need for Family Psychosocial Map • Family functioning: Beliefs, organization, communication • Psychosocial understanding of illness • Understanding developmental processes

11. Key Initial Crisis Phase Issues -Define Challenge of Illness in shared “WE” Terms -Establish Functional Collaborative Relationship with Health Care Providers

12. Communication Who will be included or excluded and why? • parents • parent-child • patient/family –healthcare team 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.

13. Multigenerational Developmental Perspective • Multigenerational experiences with illness & loss, including stories of resilience • Current timing and possible impact on future individual and family life cycle planning

14. Family Consultations • Prevention-oriented • At crucial transitions • Psychosocial Check-ups • Individual, Family & Couple

15. Specialty Care Team Members • Specialty Physician • Nurse • Behavioral Health Consultant (BHC) • Child life specialists (pediatric) • Pharmacists • Physical and occupational therapists • Psychiatrists • Other

16. Primary and Specialty Coordination • Serious gaps in medical care can occur when a number of medical providers are involved in a child’s care acting in an uncoordinated fashion. • Pediatric subspecialty teams providing disease-specific care may not be focused on the primary care needs of children under their care, or some services that might be provided by either generalists or specialists may be done by neither physician. • There is lack of consensus about whether the PCP or the specialty pediatrician is best suited to be the preferred provider, highlighting the need for closer communication and dialogue

17. Childhood Cancer:Facts, Family Impact, and Primary Care Collaboration Jackie Williams-Reade

18. Childhood Cancer Facts • Cancer is the 2nd leading cause of death (following accidents) in children aged 5 to 14 years. • Annual incidence rate in children and adolescents is 186.6 per 1 million children aged birth to 19 years. • 1 in 285 children will be diagnosed with cancer before age 20 years

19. Diagnosis Phase • Meeting with unfamiliar multidisciplinary professionals and receiving an immense load of information about the illness may overwhelm parents and increase their anxiety (Alderfer & Kazak, 2006). • Families experience is “frightening” as they are immediately plunged into this new, unfamiliar world due to the immediate need for intervention (Madeo, O’Brien, Bernhardt, & Biesecker, 2012). • At diagnosis, the world they had known has been shattered (Björk et al., 2009; Schweitzer et al., 2012; Woodgate, 2006). • Metaphor of “new trip”

20. Chronic StateTreatment Phase • The family must adapt to new routines such as medication administration, protection from infection, and a myriad of doctor’s appointments and tests (Flury, Caflisch, Ullmann-Bremi, & Spichiger, • Siblings may also feel that their lives are disrupted due to the illness (Havermans & Eiser, 1994). • Patient continues treatments that can be painful and experiences side effects (nausea, rashes, poor appetite). • Anxiety and guilt as family members watch the pediatric patient suffer (Enskar, Carlsson, Golsater, Hamrin, & Kreuger, 1997).

21. Myriad of Losses • Normal life is replaced by a “rollercoaster ride” of tests, treatments, and decisions (Fletcher, Schneider, & Harry, 2010). • A loss of normalcy occurs as families transition to a life that centers on the ill child (Long, Marsland, Wright, & Hinds, 2015). • They experience multiple losses related to the security and safety in life that they had taken for granted prior to diagnosis(Björk, Wiebe, & Hallström, 2005; Moreira & Ângelo, 2008; Schweitzer et al., 2012; Woodgate, 2006). • The lives of family members are placed on hold, suspended in time(Björk et al., 2005; Earle, Clarke, Eiser, & Sheppard, 2007; Fletcher, 2010; Woodgate, 2006); (Patterson et al., 2004)

22. End of Treatment Phase • Families’ overall burden may decrease, but also include mixed feelings such as anxiety and joy (Katz & Jay, 1984). • Can bring anxiety due to loss of security and protection due to being under constant care (Alderfer & Kazak, 2006; Katz & Jay, 1984). • Families have to recreate their everyday life patterns which can be challenging (Ostroff, Ross, & Steinglass, 2000). • Fear of death, relapse, and lasting negative side effects can persist in the minds of families (Byrne et al., 1987; Hutchinson, Willard, Hardy, & Bonner, 2009; Ostroff et al., 2000; Vannatta, Salley, & Gerhardt, 2009). • “Life is never the same” (Woodgate, 2006).

23. Positive effects • Family cohesion and marital relationships can be strengthened (Barbarin et al., 1985; Delden, & Grypdonck, 2008; Kars, Duijnstee, Pool, & Quin, 2008). • Fathers report engaging in more family activities, feeling closer to their families, and communicating more openly (Neil-Urban and Jones 2002) • Mothers and fathers of children who have completed treatment indicate increased closeness with patient (Norberg and Steneby 2009), and more likely to ‘live in the present’Quin (2008) • Parents experience positive changes in self-esteem and assigning meaning to the illness by observing their children’s emotional growth Gannoni and Shute (2010) • Siblings feel closer to their families only if they assume an active role in supporting others through treatment (Woodgate 2006b).

24. Assessments and Interventions

25. Assessing Family Functioning • Family functioning may influence current and later psychological adjustment of ill children and their treatment in both direct and indirect ways. (Drotar, 1997; Katz & Jay, 1984, Kazak et al., 2011; Pelcovitz et al., 1998; Pless, Roghmann, & Haggerty, 1972, Trask et al., 2003; Wallander & Varni, 1998). • When the family is cooperative and has open communication concerning the illness, the child might be better able to acknowledge the situation (DiMatteo, 2004; Sobo, 2004). • If psychosocial problems in the family (e.g., neglectful childcare, parental depression) deter the parents from regularly attending hospital visits and seeking medical consultation, it may impede treatment (Sobo, 2004).

26. Assessments • Psychosocial Assessment Tool, a brief screening tool based on obtained parental reports. This tool aims to detect families at psychosocial risk at the point of diagnosis. • Time-frame to complete is 10 minutes • Purpose: to assess psychosocial risk in families of children newly diagnosed with cancer • Item example: “Who can you count on to provide the following: childcare/parenting, emotional support, financial support, information, help with everyday tasks?”

27. Evidence-based Interventions Findings from review of RCTs in childhood cancer: Shields (2012) • Caregivers participating in a cognitive behavioral intervention, reported significant decreases in trait anxiety (Stehl et al., 2009) • Mothers who participated in a problem-solving intervention, reported improved problem-solving skills, decreased anxiety, and negative mood. (Sahler et al., 2005). • Parents and siblings participated in a cognitive behavioral intervention reported significant reductions in posttraumatic stress symptoms. Adolescent survivors reported reductions in hyperarousal symptoms. (Kazak et al., 2004).

28. Narrative Approach

29. Posttraumatic growth • Family members may lose their unconscious belief in immortality… and may establish beliefs more applicable to their situation, thereby beginning to regain their control and original capabilities. Björk et al. (2005) • Rebuilding schemas through thought and reflection was essential, but there was also the opportunity to construct a stronger and more resilient assumptive world. • Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers.Journal of pediatric psychology, 31(4), 413-419.

30. Collaboration with Primary Care

31. Childhood and adolescent cancer statistics, 2014 CA: A Cancer Journal for CliniciansVolume 64, Issue 2, pages 83-103, 31 JAN 2014 DOI: 10.3322/caac.21219http://onlinelibrary.wiley.com/doi/10.3322/caac.21219/full#caac21219-fig-0003

32. Survivorship • Overall 5-year survival rate is approximately 80% • 1 in 530 young adults between the ages of 20 and 39 is a childhood cancer survivor. • Increased risk of recurrence and development of subsequent cancers, chronic diseases, and functional impairments • neurocognitive and neurosensory impairment, vision or hearing impairment, hypothyroidism, infertility, obesity and metabolic syndrome, dental problems, cardiac-related health problems • counseling about behaviors such as smoking, diet, and physical activity • assessment of psychosocial adjustment and QOL • Howlader N, NooneAM,Krapcho M, et al, eds. SEER Cancer Statistics Review, 1975-2010. Bethesda, MD: National Cancer Institute;2013. • Armstrong GT, Liu Q, Yasui Y, et al. Late mortality among 5-year survivors of childhood cancer: a summary from the Childhood Cancer Survivor Study. J ClinOncol.

33. Primary Care Role in Bereavement • Partner with pediatric oncology centers and hospice professionals to provide care to terminally ill children to manage pain and symptoms and help families to make informed decisions about the child's care. • Health care providers may play an important role in helping families through the grieving process by supporting them and providing referrals for counseling and community-based support services. • Wolfe J, Tournay A, Zeltzer L. Palliative care for children with advanced cancer. In: Kreitler S, Ben Arush MW, eds.Psychosocial Aspects of Pediatric Oncology.Chichester, UK: John Wiley and Sons, Ltd; 2004:45-70. • Postovsky S, Ben Arush MW. Care of a child dying of cancer. In: Kreitler S, Ben Arush MW, eds.Psychosocial Aspects of Pediatric Oncology.Chichester, UK: John Wiley and Sons, Ltd; 2004:93-108.

34. Discussion Questions?

35. Bibliography / Reference • Davey, M., Kissil, K., Lynch, L., Harmon, LR., & Hodgson, N. (2012). Lessons learned in developing a culturally adapted intervention for African American families coping with parental cancer. Journal of Cancer Education, 27, 744-751. • Barakat, L., Alderfer, M., & Kazak, A. (2005). Posttraumatic growth in adolescent survivors of cancer and their families. Journal of Pediatric Psychology.Davey, M., Kissil, K., Lynch, L., Harmon, LR., & Hodgson, N. (2013). A culturally adapted family intervention for African American families coping with parental cancer: Outcomes of a pilot study. Psycho-Oncology, 22, 1572-1580. • Deshields, T., Zebrack, B., & Kennedy, V. (2013). The state of psychosocial services in cancer care in the United States. Psycho‐oncology, 22(3), 699-703. • Lewis, F. M., Casey, S. M., Brandt, P. A., Shands, M. E., & Zahlis, E. H. (2006). The enhancing connections program: Pilot study of a cognitive-behavioral intervention for mothers and children affected by breast cancer. Psycho-Oncology, 15(6), 486-497. • Long, K. & Marsland, L., (2011). Family adjustment to childhood cancer: A systematic review. Clinical Child and Family Psychology Review, 14(1), 57-88.

36. Rolland, J.S. (2012). Mastering family challenges with serious illness and disability. In F. Walsh (Ed.) Normal Family Processes. 4th Ed, pp 452-482. New York: Guilford. Rolland, J.S. (in press, 2017). Mastering family challenges with illness and disability: An integrative practice model. New York: Guilford Press Rolland, J.S. & Walsh, F. (2006) Facilitating family resilience with childhood illness and disability. Current Opinion in Pediatrics, 18:527-538. Williams-Reade, J., Lamson, A, White, M.B., Knight, S., Ballard, S., and Desai, P.P. (2015). “Paediatric Palliative Care: A Review of Needs, Obstacles, and the Future.” Journal of Nursing Management, 23(1), 4-14. doi: 10.1111/jonm.12095 PMID:23944156 .

37. Session Evaluation Please complete and return theevaluation form to the classroom monitor before leaving this session. Thank you!