PARENTING SIBLINGS OF CHILDREN WITH COMPLEX DISEASES

1. PARENTING SIBLINGS OF CHILDREN WITH COMPLEX DISEASES Dr. Maru Barrera Psychology, The Hospital for Sick Children, Toronto, Canada Sibling appreciation Day, October 18th, 2014

2. Siblings of Children with Complex diseases • When a child is diagnosed with and treated • for a complex disease all family members • including healthy siblings experience • distress after diagnosis, during treatment and ongoing daily life with a sick child at home; • Demands of treatment can place major burden in family resources; • All changes and distress combined may lead to behavioural and/or emotional difficultiesin the ‘healthy’ siblings.

3. Normal Influences in Child Development and Having a Sick Child Home SickChild School, peers, friends + Extended Family + Parents Sibling(s) Community Media Time

4. Siblingship and Normal Development • Siblings’ behaviors can be described in terms of: • a) Prosocial behavior: playmates, companions for life, mutual teachers, mutual emotional bond. • b) Conflictual behavior: rivalry, competition for parental attention, favour, love, etc. • c) Relative to status in the family • (Abramovitch, Pepler, & Corter, 1982; Dun & Kendrick, 1982; Kramer & Gottman, 1992; Stocker & McHale, 1992)

5. Siblings and Parenting • “Helping siblings to get along with one another is one of the most challenging aspects of parenthood” (Kramer and Baron, 1995, p.95) • This becomes more challenging when one of the children is • Chronically/seriously ill

6. Siblings’ voices

7. Siblings’ Perceptions of Changes Perception of being less important/less loved Perception of being a burden in the family Being less important Being treated differently Having less privileges than the ill child Ways they are left out and included in the cancer experience Siblings’ Perceptions of changes in their role within the family Changes in roles Increased responsibilities Caregiving role Change over 8 week group intervention

8. Being Treated Differently:Perception of Being a Burden in the Family • "She described how she did not like to open up to her family and peers because she did not want to burden others with her problems.” (log, age 17)

9. Being Less Important:Perception of Being Less Important/Less Loved • “[Sibling] then shared that when her brother got hurt her mother got her to run around the house to get things to help him, and while she was running around she got hurt from falling down. However, when she got hurt no one paid attention to her since they were all helping her brother." (log, age 9)

10. Siblings’ Emotional Experience Loss Dismissed/ Overlooked Guilt Confusion Frustration Emotion Regulation Empathy for bro/sis Hope Worry Related to exposure of cancer Related to brother’s/ sister’s illness Siblings’ Emotional Experience Related to Family unit Stress awareness Fam stress Impact on self Change over 8 week group intervention

11. Sibling’s Emotional Experiences Related to having a Sick Bro/Sis • Sense of loss: • “...he drew a before and after picture of him just relaxing and watching TV, then in the after looked sad.” He stated: • “I feel different than I used to” • Sense of being dismissed or overlooked: • Siblings describe being dismissed, feeling left out • or brushed aside: • “ My hurt is not noticed“ • Sense of guilt: • Children demonstrated a strong sense of guilt and • responsibility: • "He shared that he felt he had done something wrong and that he needed to help his mom more and he felt sad and guilty; he stated: “[it’s] "My fault” • “

12. Sibling’s Awareness of Impact on others in the Family • Stress Awareness: stress experienced by parents and other family members: • “There is also less money for other things" • "Dad wants to help more and more but is becoming more and more stressed out” • "Mom feels more stressed and has mood changes" • “[ill child] is more sensitive and stressed out, over-reacts to things people say" • Stress Awareness Impact on Self: aware of own difficulties navigating the high emotions in the household: • “Siblings see themselves as mediators, constantly trying to keep status quo.” (Logs) • “[siblings] acknowledge that sometimes they must walk on eggshells around their parents because parents can be irritable” (Logs) • "My family went from joyful to a bit more sad and frustrated“ (11y.o.) • "I feel like our lives went into complete chaos“ (13 y.o.)

13. What are the signs to look for in siblings that are struggling? • Changes in typical age appropriate behaviour, e.g., becoming more irritable, quieter, withdrawn • A note from the teacher regarding child’s recent inattention, disinterest in activities which he/she enjoyed before, getting into fights with others, withdrawn; missing classes, atypical somatic complains

14. How can we be proactive, instead of reactive, in helping siblings deal with the day to day stress of having a sick child at home? • Always consider the sibling’s age and unique needs. • Keep siblings ‘in the loop’, age appropriately, regarding the sick child condition, progress, changes in health, prognosis, treatment; • Reassure siblings that their needs are going to be cared also even if there are changes in the sick child’s condition. • Prepare them for changes in their caring schedule e.g., who will care for them when you are away, who will pick them up, when you are planning to come back individuals who typically care for them and in how their needs will be addressed;

15. How can we be proactive… in helping siblings living a sick child at home? (cont.) • Reassure siblings of how much they are loved, emphasizing differences in needs do not reflect differences in love; • Reassure siblings that their needs are also important to you and will continue to be addressed; • Discuss with siblings expectations and changes in roles for every family member, making sure that siblings are active in the discussion; • Get their input in how they can help (e.g., playing with sick child, reading to him, helping with meds.) to make them feel included • Make sure you show appreciation and thank them for their help and effort caring for their sick bro/sister

16. What are specific ways/ techniques to help siblings? Tips for parenting • Involve siblings in the ill child’s treatment and daily life (playing, helping with care of ill child, sharing ‘benefits’ of being healthy or being sick) • (Barrera, 2001;Chesler et al, 1992; Kramer, 1981; Woodgate & Wilkins, 2005) • Open communication within the family -- tell the child\patient about the illness and treatment, • - keep healthy siblings ‘in the loop’ of the ill child’s progress with treatment; • Social support • -become the family manager to arrange or facilitate ‘special’ activities for siblings and utilize help from family and friends • (Barrera et al, 2004; Chesler et al, 1992; Cohen et al, 1994; Heffernan & Zanelli, 1997; Sloper & While, 1996)

17. Tips for parenting: Focus on what you see, feel or what needs to be done with each child (Faber & Mazlish, 1987)

18. Focus on the Behaviour

19. Focus on the behaviour

20. Avoid comparing one child to the other

21. Avoid praising one sibling while putting the other down

22. Addressing each child’s needs

23. Equality based on need

24. Express Love based on Uniqueness and Need

26. Provide Time based on Need

27. Be aware of Teachable Moments: Understanding Each Child Needs

28. Make Each Child Feel Important to You

29. Take time to Explain, showing Understanding and Caring to Each Child

30. Tips for Parenting the sick Child and Siblings (cont.) • Family cohesion/ closeness: • -Keep every family member involved, helping and sharing the good and difficult news and events • (Carpenter & Levant, 1994; Cohen et al, 1994; Horwitz & Kazak, 1990; Sloper & While, 1996); • Family time: • -Plan ‘special’ one-on-one quality time with each child; • -When possible, facilitate or seek lots of fun activities indoors and outdoors as a family.

31. Tips for parenting the child with Cancer and Siblings (cont.) • ‘Normalize’ your parenting and family life as soon as possible; • Set clear boundaries, firm but flexible; with fairness based on need; • Set realistic expectations for you and the children; • Explain ‘new’ normal to sick and healthy children; • Listen to all your children; • void overprotecting the sick child; • Avoid projecting your fears and feelings (anger, sadness) on your children; • Have fun with all your kids; • ‘

32. Help in the Community • Children’s Hospital • Child’s treating team (e.g. Social workers, psychologists) • Community health organizations • Provincial health organizations • Family physician/ pediatrician • Advocacy organizations in the province

33. BOOKS

34. “Dogma” of Parenting • How to: • Nurture your child • Find and reinforce the good • Listen to your child • Express yourself • Determine whose problem it is • Solve problems • Design choices and consequences • Choose your strategy • Cope with anger • Take care of yourself • Based on behavioral principles

35. Behavior Management: Parents in Charge • No talking and no emotion rules; • Consistency among caregivers; • Stop behavior (arguing, tantrums, fighting) • 1-2-3 or ‘counting’ procedure • Start behavior (doing homework, going to bed, cleaning room) • ++reinforcement, praise little steps • kitchen timer, • natural consequences • Uses behavioral principles

36. Collaborative Problem Solving Approach Plan A: My way or the highway Plan B: Collaborative approach Plan C: Whatever you want Components of Plan B Empathy: Acknowledge each other’s concerns; two concerns, two views, not just the parents’ Define the problem: express/ listen what the concern is Invitation to generate solutions: WIN-WIN solutions Uses behavioral principles

37. How to help siblings (and parents) live well together

38. Thanks you!!!