Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.

Invisible child siblings in the world of chronic illness july 2011

5,980 views

Published on

The Invisible Child: Understanding the Experiences of Siblings in the World of Chronic Illness was presetned at Akron Children's Hospital on July 6, 2011. The presentation is part of a monthly Pediatric Palliative Care Curriculum Series.

  • DOWNLOAD THIS BOOKS INTO AVAILABLE FORMAT (2019 Update) ......................................................................................................................... ......................................................................................................................... Download Full PDF EBOOK here { https://soo.gd/irt2 } ......................................................................................................................... Download Full EPUB Ebook here { https://soo.gd/irt2 } ......................................................................................................................... Download Full doc Ebook here { https://soo.gd/irt2 } ......................................................................................................................... Download PDF EBOOK here { https://soo.gd/irt2 } ......................................................................................................................... Download EPUB Ebook here { https://soo.gd/irt2 } ......................................................................................................................... Download doc Ebook here { https://soo.gd/irt2 } ......................................................................................................................... ......................................................................................................................... ................................................................................................................................... eBook is an electronic version of a traditional print book THIS can be read by using a personal computer or by using an eBook reader. (An eBook reader can be a software application for use on a computer such as Microsoft's free Reader application, or a book-sized computer THIS is used solely as a reading device such as Nuvomedia's Rocket eBook.) Users can purchase an eBook on diskette or CD, but the most popular method of getting an eBook is to purchase a downloadable file of the eBook (or other reading material) from a Web site (such as Barnes and Noble) to be read from the user's computer or reading device. Generally, an eBook can be downloaded in five minutes or less ......................................................................................................................... .............. Browse by Genre Available eBooks .............................................................................................................................. Art, Biography, Business, Chick Lit, Children's, Christian, Classics, Comics, Contemporary, Cookbooks, Manga, Memoir, Music, Mystery, Non Fiction, Paranormal, Philosophy, Poetry, Psychology, Religion, Romance, Science, Science Fiction, Self Help, Suspense, Spirituality, Sports, Thriller, Travel, Young Adult, Crime, Ebooks, Fantasy, Fiction, Graphic Novels, Historical Fiction, History, Horror, Humor And Comedy, ......................................................................................................................... ......................................................................................................................... .....BEST SELLER FOR EBOOK RECOMMEND............................................................. ......................................................................................................................... Blowout: Corrupted Democracy, Rogue State Russia, and the Richest, Most Destructive Industry on Earth,-- The Ride of a Lifetime: Lessons Learned from 15 Years as CEO of the Walt Disney Company,-- Call Sign Chaos: Learning to Lead,-- StrengthsFinder 2.0,-- Stillness Is the Key,-- She Said: Breaking the Sexual Harassment Story THIS Helped Ignite a Movement,-- Atomic Habits: An Easy & Proven Way to Build Good Habits & Break Bad Ones,-- Everything Is Figureoutable,-- What It Takes: Lessons in the Pursuit of Excellence,-- Rich Dad Poor Dad: What the Rich Teach Their Kids About Money THIS the Poor and Middle Class Do Not!,-- The Total Money Makeover: Classic Edition: A Proven Plan for Financial Fitness,-- Shut Up and Listen!: Hard Business Truths THIS Will Help You Succeed, ......................................................................................................................... .........................................................................................................................
       Reply 
    Are you sure you want to  Yes  No
    Your message goes here
  • Dating for everyone is here: ❶❶❶ http://bit.ly/39sFWPG ❶❶❶
       Reply 
    Are you sure you want to  Yes  No
    Your message goes here
  • Dating direct: ❶❶❶ http://bit.ly/39sFWPG ❶❶❶
       Reply 
    Are you sure you want to  Yes  No
    Your message goes here
  • Thirteen Signs the Angels Are With You ♣♣♣ http://t.cn/AiuvUCDd
       Reply 
    Are you sure you want to  Yes  No
    Your message goes here
  • Attract Abundance Into Your Life - New musical "Angel tone" calls in your angels to help you manifest abundance and miracles into your life... starting in just minutes per day. Go here to listen now. ♥♥♥ http://t.cn/AiuvUCDd
       Reply 
    Are you sure you want to  Yes  No
    Your message goes here

Invisible child siblings in the world of chronic illness july 2011

  1. 1. The Invisible Child: Understanding the Experiences of Siblings in Context of Family Illness Laura Gerak, PhD Narketta Campbell, CCLS Melissa Mares, CCLS Kimberly Schafer-Alt, LISW Matthew Tweddle, MDiv Akron Children’s Hospital Pediatric Palliative Care Curriculum July 6, 2011
  2. 2. Objectives <ul><li>Discuss typical sibling reactions to chronic illness. </li></ul><ul><li>Describe family impact and sibling quality of life when living with chronic illness. </li></ul><ul><li>Describe best practice interventions with siblings of children with chronic illness. </li></ul>
  3. 3. As healthcare providers, <ul><li>We need to realize we don’t fully understand our patients’ experience or their siblings’… </li></ul><ul><li>But we do have an opportunity to either help or hinder. How? </li></ul><ul><li>Today: Exploring further the emotional responses of siblings and families </li></ul><ul><li>Today: Learning some do’s and don’ts </li></ul><ul><li>Always: Keeping today’s insights fresh through deliberate practice and with humility </li></ul>
  4. 4. Positive Emotional Experiences <ul><li>Research has shown that many siblings report some positive effects as a consequence of their sibling’s illness: </li></ul><ul><ul><li>Maturity </li></ul></ul><ul><ul><ul><li>Experiences differ from peers </li></ul></ul></ul><ul><ul><ul><li>Increased responsibilities </li></ul></ul></ul><ul><ul><ul><li>Insight – appreciation of siblings’ abilities, family, & own health & capabilities </li></ul></ul></ul><ul><ul><li>Social Competence </li></ul></ul><ul><ul><ul><li>Learn pro-social behaviors </li></ul></ul></ul><ul><ul><li>Tolerance </li></ul></ul><ul><ul><li>Advocacy </li></ul></ul><ul><ul><ul><li>Sibs value of their ill siblings’ abilities can lead to sibs becoming ardent advocates for people w/ similar health difficulties </li></ul></ul></ul><ul><ul><li>Independence and Autonomy </li></ul></ul>(Havermans & Eiser, 1994)
  5. 5. Negative Emotional Experiences <ul><li>Over-identification </li></ul><ul><ul><li>Severity of sibling’s illness </li></ul></ul><ul><ul><li>“ invisibility” of the sibling’s illness </li></ul></ul><ul><ul><li>Age </li></ul></ul><ul><li>Embarrassment </li></ul><ul><ul><li>Siblings may be acutely sensitive about the appearance and behavior of their siblings. </li></ul></ul><ul><li>Guilt </li></ul><ul><ul><li>Feeling responsible for the disability or illness </li></ul></ul><ul><ul><li>Survivor's guilt </li></ul></ul><ul><ul><li>Guilt over abilities or health </li></ul></ul><ul><ul><li>Guilt over typical sibling conflicts </li></ul></ul>
  6. 6. Negative Emotional Experiences <ul><li>Isolation/Loneliness/Loss </li></ul><ul><ul><li>Isolation from Parents’ Attention </li></ul></ul><ul><ul><li>Isolation from Information, the Process </li></ul></ul><ul><ul><li>Isolation from Peers </li></ul></ul><ul><li>Resentment </li></ul><ul><ul><li>Loss of Parental Attention </li></ul></ul><ul><ul><li>Unequal Treatment and Excessive Demands </li></ul></ul><ul><li>Increased Responsibilities </li></ul><ul><li>Pressure to Achieve </li></ul>
  7. 7. “ I became a latchkey child in a lot of ways- always left by myself, so I feel that essentially I became a peripheral member of my family during that time. I wasn’t included at all.” — Peter (Ellis, 1992)
  8. 8. Sibling Quality of Life <ul><li>Physical Functioning </li></ul><ul><ul><li>Somatic Symptoms </li></ul></ul><ul><ul><li>Motor Skills </li></ul></ul><ul><ul><ul><li>Siblings (aged 7-11) in families with chronic illness report more motor difficulties than peers </li></ul></ul></ul><ul><li>Emotional Behavioral Functioning </li></ul><ul><ul><ul><li>50% of siblings experience significant emotional difficulties </li></ul></ul></ul><ul><li>School Functioning </li></ul><ul><ul><ul><li>Siblings aged 7-18 years experience more cognitive problems than peers </li></ul></ul></ul><ul><li>Social Functioning </li></ul>(Houtzager et al., 2005; Zeltzer et al., 1996)
  9. 9. Sibling Quality of Life <ul><li>Family Roles & System </li></ul><ul><ul><li>When a child is facing a health or developmental crisis, it may be impossible for parents to meet all their children’s needs for emotional support. </li></ul></ul>
  10. 10. My advice is that doctors out to give information to the brothers and sisters straight ! Sometimes, instead of telling them the truth, doctors tell siblings a lot of baloney. It is easier to handle when at least you have all the facts.” — Maria age 15 (Murray & Jampolsky, 1982)
  11. 11. Best Practice Interventions <ul><li>Overview </li></ul><ul><li>Information Needs of Siblings </li></ul><ul><li>Meeting Specific Sibling Needs </li></ul><ul><li>Medical Staff Role in Facilitating Positive Sibling Coping </li></ul>
  12. 12. Information Needs of Siblings <ul><li>Clear, straightforward explanations </li></ul><ul><li>Describe differences in feelings, behaviors, body functions </li></ul><ul><li>Vary according to understanding </li></ul><ul><ul><li>Ask first and listen. </li></ul></ul><ul><li>Vary according to age. </li></ul><ul><ul><li>Preschoolers - concrete thinkers. </li></ul></ul><ul><ul><li>School Age Children- often develop private theories to explain their sib’s problems and begin to question “why” </li></ul></ul><ul><ul><li>Teenagers - still misconceptions, may assign a psychological or metaphysical reason for a diagnosis. </li></ul></ul>
  13. 13. Information Needs of Siblings <ul><li>Avoid Misconceptions about the condition </li></ul><ul><ul><li>“ Information, even concerning a painful subject is preferable to ignorance distorted by imagination.” </li></ul></ul><ul><ul><li>Callahan (1990) </li></ul></ul>
  14. 14. Education of Siblings <ul><li>Educating Siblings Directly Involved in Medical Treatment </li></ul><ul><ul><li>Older siblings likely to be involved in care? </li></ul></ul><ul><ul><li>Briefly left alone with ill child? </li></ul></ul><ul><li>Consideration of Impact on Sibling Involved in Medical Treatment </li></ul><ul><ul><li>Are siblings developmentally ready to help in sibling medical care? </li></ul></ul><ul><ul><li>Are expectations age-appropriate? </li></ul></ul>
  15. 15. Assess Sibling Need for Support <ul><li>Individual emotional support </li></ul><ul><li>Family support system </li></ul><ul><ul><li>roles and responsibilities of each member </li></ul></ul><ul><ul><li>strengths and needs </li></ul></ul><ul><ul><li>child care options </li></ul></ul><ul><ul><li>understanding of illness </li></ul></ul>(Murray, 1995)
  16. 16. Meeting Siblings’ Needs <ul><li>Right information </li></ul><ul><li>Routine involvement </li></ul><ul><li>Revise plans </li></ul><ul><ul><li>Expand visitation hours </li></ul></ul><ul><ul><li>Schedule times for all to meet with healthcare professionals </li></ul></ul><ul><ul><li>Schedule times for “Family Time” during hospitalizations </li></ul></ul><ul><li>Referrals for appropriate services, programs </li></ul>
  17. 17. Parental Role in Sibling Responses <ul><li>Factors predictive of sibling adjustment: </li></ul><ul><ul><li>Parent depression </li></ul></ul><ul><ul><li>Marital adjustment of parents to childhood chronic illness </li></ul></ul><ul><ul><li>Availability of support to parents </li></ul></ul><ul><ul><li>Parent-sibling communication patterns </li></ul></ul>(Cohen, 1985)
  18. 18. Parent Strategies <ul><ul><li>Balance the needs of all children </li></ul></ul><ul><ul><ul><li>Distract to focus on their own needs </li></ul></ul></ul><ul><ul><ul><li>Use as much honesty as possible </li></ul></ul></ul><ul><ul><li>Make time to listen to siblings one-on-one </li></ul></ul><ul><ul><li>Involve siblings in decisions and treatment plans as appropriate) </li></ul></ul>
  19. 19. 5 Common Mistakes <ul><li>Responsibility expectations beyond maturity </li></ul><ul><li>Placing the needs of the sick child above all else </li></ul><ul><li>Not including siblings in decisions that affect them </li></ul><ul><li>Not giving information / education </li></ul><ul><li>Encouraging guilt: </li></ul><ul><li>“ How do you think…[sick child] feels?” </li></ul>
  20. 20. For All Healthcare Professionals <ul><ul><li>Most important factor in facilitating positive coping in siblings is increasing OPEN COMMUNICATION. </li></ul></ul><ul><ul><ul><li>Use of “Third Person” technique- “Lots of kids think….” </li></ul></ul></ul><ul><ul><ul><li>Educate parents of developmental factors as they relate to siblings- i.e., common fears, reactions, etc. </li></ul></ul></ul><ul><ul><li>Other common sibling facilitative behaviors can include: </li></ul></ul><ul><ul><ul><li>Making siblings feel special </li></ul></ul></ul><ul><ul><ul><li>Encouraging consistent discipline for all children </li></ul></ul></ul><ul><ul><ul><li>Including siblings in visits to the hospital or clinic </li></ul></ul></ul><ul><ul><ul><li>Medical staff encouraging parents to spend time with their other children </li></ul></ul></ul><ul><ul><ul><li>Medical staff providing opportunities for siblings to ask questions of them, and providing honest responses. </li></ul></ul></ul>(Murray, 1995; Walker et al., 1992)
  21. 21. 6 “Shoulds” Suggested by Siblings for Medical Professionals & Parents <ul><li>Be treated as children, not as supplementary adult caretakers </li></ul><ul><li>Not assume responsibilities beyond their preparation or maturity </li></ul><ul><li>Be encouraged to express their feelings openly </li></ul><ul><li>Have their questions answered in an age-appropriate manner </li></ul><ul><li>Be involved in discussions and decisions involving family matters, particularly those that personally affect them </li></ul><ul><li>Feel that their reactions and opinions are valued </li></ul>
  22. 22. Practical Resources <ul><li>Family Resource Center: Judy Griggs (x38180) </li></ul><ul><li>www.akronchildrens.org </li></ul><ul><li>> Health info </li></ul><ul><li>> Family Resource Center </li></ul><ul><li>> Library Thing catalogue </li></ul><ul><li>> Tags </li></ul><ul><li>> “Sibling support” </li></ul><ul><li>The Sibling Slam Book: What it’s really like to have a brother or sister with special needs.” Edited by Don Meyer. </li></ul><ul><li>Support Groups On-site </li></ul><ul><ul><li>Supporting Super Siblings ; Sickle Cell Family Support Group) </li></ul></ul>
  23. 23. Practical Resources <ul><li>Sibshops </li></ul><ul><ul><li>County specific, illness specific </li></ul></ul><ul><li>Faith Communities </li></ul><ul><li>www.211.org </li></ul>
  24. 24. References <ul><li>Cohen, D.S. (1985). Pediatric cancer: Predicating sibling adjustment. Dissertation Abstracts International, 46 , 746-751. </li></ul><ul><li>Fleitas, J. (2000). When Jack fell down…Jill came tumbling after. The American Journal of Maternal/Child Nursing, 25(5), 267-273. </li></ul><ul><li>Havermans, T., & Eiser, C. (1994). Siblings of a child with cancer. Child: Care, Health, & Development, 5 , 309-322. </li></ul><ul><li>Huegel, Kelly (1998). Young People and Chronic Illness: True Stories, Help, and Hope. </li></ul><ul><li>Mackay, B. (1999). When your brother or sister has cancer: Supporting siblings’ rights to know. Paper presented to the Children’s Issues Centre’s 3 rd Child and Family Policy Conference, July, Dunedin, New Zealand. </li></ul><ul><li>Meyer, D.J., Vadasy, P.F. (2006). Sibshops: Worshops for Siblings of Children with Special Needs . Paul H. Brookes Publishing Co.: Baltimore, Maryland. </li></ul><ul><li>Murray, J.S. (1995). Social support for siblings of children with cancer. Journal of Pediatric Oncology Nursing, 12 , 62-70. </li></ul><ul><li>Murray, J.S. (1998). The lived experience of childhood cancer: One sibling’s perspective. Issues in Comprehensive Pediatric Nursing, 21 , 217-227. </li></ul><ul><li>Murray, J.S. (2001). Social support for school-aged siblings of children with cancer: A comparison between parent and sibling perceptions. Journal of Pediatric Oncology Nursing,18(3), 90-104. </li></ul><ul><li>Walker, C., Adams, J., Curry, D., Guttuso, J., Gleason-Morgan, D., Hinds, P., Kramer, R., Panzarella, C., Vogel, R., Weekes, D., Wright, P. (1992). A Delphi study of pediatric oncology nurses’ facilitative behaviors. Journal of Pediatric Oncology Nursing, 10 , 126-132. </li></ul>
  25. 25. One sibling’s experience….

×