The Connection Between Hospital and Home

1. The Connection Between Hospital and Home Jennifer Jankowski, CCLS Nemours/Alfred I. duPont Hospital for Children Bethany Polash, CCLS Nemours/Alfred I. duPont Hospital for Children

2. Objectives • To provide theories and research on effects of hospitalization on siblings • To provide Child Life Specialists tools for assessment of siblings • To discuss interventions and examples

3. “The illness of a brother or sister is considered to be one of life’s most stressful events” (Thompson, 2009). • Over the past 30 years, research on the topic of sibling experiences has dramatically increased and has created a growing awareness (Van Riper, 2003).

4. Family Systems Perspective (Anderson & Sabatelli, 2011) • A complex structure of a group of individuals who are interdependent upon one another. They share experiences, a sense of history, and emotional bonding. They create methods to meet individual needs as well as the needs of the entire group.

5. Piaget’s Theory • “Piaget describes understanding as constructed through increasingly sophisticated processes involving biologic maturation, assimilation of experiences, and social interactions” (Rozdilsky, 2005, p. 453). • Young kids lack object permanence. Therefore, separation from siblings and parents causes hospitalized children distress (Rozdilsky, 2005).

6. Letter from a Sibling “Dear Mom, Tonight, Dad was telling me how hard it was when Trudy was in the hospital. He doesn’t think it was hard for me at all. I missed you. I saw her get all these presents. I saw everyone visiting her and babying her, and there was nothing I could do about it. Sometimes I feel so alone and left out and even unloved. I know I’m overreacting, and I know that some people have so much less than me, but it’s not my fault I don’t have any medical problems. I wish I did! Love, Jefferey” (Fleitas, 2000, p. 267-8)

7. Effects on Siblings • Nonhospitalized children can experience separation from parents and siblings and are often exposed to irritable parents who are coping with the struggles (such as financial and emotional) of having a hospitalized child (Thompson & Stanford, 1981). • Visitation can have positive outcomes such as normalization of the entire hospitalization experience (Thompson & Stanford, 1981). • If not able to visit, siblings may develop fantasies about the hospital/patient’s condition (Rozdilsky, 2005; Thompson & Stanford, 1981). • Siblings may feel responsible for their brother or sister’s condition (Thompson, 2009).

8. Challenges of Having a Hospitalized Sibling(Craft & Wyatt, 1985; Drotar & Crawford, 1985; Fleitas, 2000; Rozdilsky, 2005) • Disruption of daily routines • Emotional hardships • Sadness, fear, loneliness, jealousy, resentment, guilt • Feelings of isolation from peers and family • Confusion surrounding sibling’s illness • Embarrassment • Adjustment problems • Anxiety, trouble in school, behavioral issues

9. Challenges of Having a Hospitalized Sibling (Georganda,1985; Rozdilsky, 2005) • Siblings being cared for by others • One study showed that siblings that were cared for outside of their house by neighbors had less stress than those who were cared for in their house by relatives (Rozdilsky, 2005) • Shift in family boundaries: • Older siblings may take on more of a parental role to younger siblings • Hospitalized child may be in a more central position for importance • Norms and rules may change

10. Challenges of Having a Hospitalized Sibling • Craft and Wyatt (1985) conducted a survey that showed the following four main concerns expressed by siblings: • What is wrong? Will my brother/sister die? Will he/she get better? • Is it my fault? • Could it happen to me, too? • Don’t you care about me?

11. “Healthcare professionals should regard all siblings of sick children to be at risk of developing psychological problems until a full assessment of social support, family circumstances, and behaviors prove otherwise” (O’Brien, Duffy & Nicholl, 2009, p. 1365).

12. Assessment Things for the Child Life Specialist to consider: • Age of patient and siblings • Isolation status of hospitalized sibling • Parents don’t want to bring siblings in to visit • Emotional state of patient • Siblings’ understanding and background information (how they coped in past events, if applicable) • Children understand more than they can explain (Rozdilsky, 2005) • Previous relationship between siblings • Length of stay, length of separation

13. Sibling Assessment Developed by Jenn Jankowski, CCLS and Bethany Polash, CCLS

14. How Child Life Specialists Help Siblings(Craft & Wyatt, 1985; Fleitas, 2000; Rozdilsky, 2005 ) • Support groups and blogs • Allow for siblings to feel that their opinions and reactions are valued • Reinforce strengths and minimize stress • Provide educational programming

15. How Child Life Specialists Help Siblings • Prepare well siblings before arrival to patient’s room (consider developmental level when deciding when to prepare them) • Be as honest as possible • Include seriousness of the illness, changes that may result, information regarding illness (Causation, contagiousness, etc.) • “Children who believe they are lied to may develop distrust of the people they love and depend upon the most” (Rozdilsky, 2005, p. 457).

16. Why Visiting is Important “Sibling presence helps to facilitate family adaptation to hospitalization, can help to retain the feeling of ‘family,’ and helps children integrate a stressful situation into their lives. Presence at the bedside helps siblings cope with intense emotions, stress, and change that are brought about by this event. Siblings have an opportunity to see, feel, and touch their siblings, so they can reassure themselves that they really exist,” (Rozdilsky, 2005, p. 454).

17. How Child Life Specialists Help Parents (Craft & Wyatt, 1985; Fleitas, 2000; Rozdilsky, 2005) • Prepare parents for reactions that well siblings have after they visit • Reactions to parents’ emotions and seeing hospitalized child • Providing parents with tools to help well siblings can increase their confidence • Educate parents on common reactions that may result and encourage to get well siblings help if reactions are severe • Be sensitive to timing • Encourage parents not to treat siblings as supplemental caretakers • Support groups and blogs

18. Keeping Siblings Connected During End of Life(Rozdilsky, 2005) • Giving well siblings jobs to do (picking out clothes for the day, helping to make food, etc.) • Allow privacy for older siblings to process emotions in patient room • Allow them to say good-bye how they wish to (squeeze hands, whisper to them, kiss, etc.) • Provide information about death that is culturally and spiritually appropriate for the family

19. Troubleshooting • Families may not understand the value of keeping siblings connected • Families may be too overwhelmed to shift focus off of patient (Drotar & Crawford, 1985) • Families may be fearful of causing more harm than good • Families may not know the best way to explain situation to the well sibling (Rozdilsky, 2005) • Specialists should respect decisions, but explore feelings to allow for correcting misconceptions and misunderstandings (Rozdilsky, 2005)

20. Specific Interventions:Bibliotherapy • “The term bibliotherapy has been defined by Russell and Shrodes as ‘a process of dynamic interaction between the personality of the reader and the literature – an interaction which may be used for personality assessment, adjustment, and growth,’” (Silverberg, 2003). • Identification, projection, introjection, catharsis, and insight

21. Bibliotherapy • Useful for many ages • Conversation starter • Provides validation of feelings/emotions • Can be used in conjunction with other therapeutic activities • Provides parents with a resource

22. The Invisible StringBy: Patrice Karst • Target ages: older toddler-school aged • Bereavement or long-term separation • Heart activity makes the concept more concrete

23. Carrie Flower Goes to the HospitalBy: Cynthia W. Post • Target age: Preschooler-school-aged • Explains hospitalization • Relatable for various types of hospitalization

24. What About Me? When Brothers and Sisters Get SickBy: Allan Peterkin, M.D. • Target Ages: Older Toddler-School-aged • Focuses on the emotions of the nonhospitalized child

25. Intervention:Therapeutic Activities • Bead program • Beads of Courage • Create your own • Treasure chest with letters/pictures/items back and forth • “All About Us” sibling wall in patients room • Handprints as a family • Skype sessions

26. Intervention:Supervised Support Groups • Create a safe and comfortable environment for siblings • Provide a sense of normalcy • Opportunity to be around peers with similar life circumstances • Opportunity for expression • Houtzager et al (2001) completed a support group program analysis completed in 2001 children were able to be assisted in coping with effects of their sibling’s illness on their own lives. • Siblings were found to be less anxious and felt more in control. (O’Brien, Duffy & Nicholl, 2009) • Examples: • Chronically Cool Families • SWAT

27. Questions?

28. References Articles Anderson, S.A. & Sabatelli, R.M. (2011). Family interaction: A multigenerational perspective. (5th ed.). Boston, MA: Allyn & Bacon. Craft, M.J., Wyatt, N., & Sandell, B. (1985). Behavior and feeling changes in siblings of hospitalized children. Clinical Pediatrics, 24, (7), 374-378. Craft, M.J. & Wyatt, N. (1985). Effect of visitation upon sibling responses. Maternal-Child Nursing Journal, Spring 15 (1), 47-59. Drotar, D. & Crawford, P. (1985). Psychological adaptation of siblings of chronically ill children: Research and practice implications. Developmental and Behavioral Pediatrics, 6 (6), 355-362. Fleitas, J. (2000). When Jack fell down…Jill came tumbling after: Siblings in the web of illness and disability. The American Journal of Maternal/Child Nursing, 25 (5), 267-273.

29. Georganda, E.T. (1985). Chronic illness and its effects on the family: A literature review. 1-5. O’Brien, I., Duffy, A., & Nicholl, H. (2009). Impact of childhood chronic illnesses on siblings: a literature review. British Journal of Nursing, 18 (22), 1358-65. Rozdilsky, J. (2005). Enhancing sibling presence in Pediatric ICU. Critical Care Nursing Clinics of North America, 17 (4), 451-61. Silverberg, L.I. (2003). Bibliotherapy: The therapeutic use of didactic and literary texts in treatment, diagnosis, prevention, and training. JAOA, 103 (3), 131-35. Van Riper, M. (2003). The sibling experience of living with childhood chronic illness and disability. Annual Review of Nursing Research, 21, 279-302.

30. References Books Thompson, R.H. (2009). The handbook of child life: A guide for pediatric psychosocial care. Springfield, IL: Charles C Thomas. Thompson, R. & Stanford, G. (1981). Child Life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas.

31. Resources Karst, P. (2000). The invisible string. Camarillo, CA: DeVorss & Company. Post, C.W. (2010). Carrie flower goes to the hospital. West Conshohocken, PA: Infinity Publishing. Peterkin, A. (1992). What about me? When brothers and sisters get sick. Washington, DC: Magination Press.