Invisible child siblings in the world of chronic illness july 2011


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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.

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  • Maturity- sibs are often well-adjusted & characterized by greater maturity and responsibility than typical of age peers. When a family member has a significant illness, insight into the human condition is inevitable. Siblings’ expanded understanding frequently adds to a more mature view of the world. From and with their families they learn determination, patience, and other qualities that can help them grow into mature, sensitive adults. Many siblings, realizing how their families differ from others in the community, often express appreciation for things that may go unnoticed or unappreciated by peers Social competence- studies of found that siblings of children w/ chronic illness can be significantly less hostile, more accepting, and more supportive of peers. Tolerance- Tritt & Essess (1988) found that sibling of kids with chronic illnesses developed more patience, understanding, sensitivity, & awareness of how to deal w/ someone who is sick. In fact, siblings of people with chronic illness often gravitate toward the helping professions. Advocacy
  • Overidentification occurs when a sibling wonders if he/she will share a sibling’s problem. Fears can be real, especially to children in stage of dev w/ “magical thinking.” Studies have found that overidentification is more likely to occur when the illness is mild, and especially if it is “invisible.” (i.e., epilepsy). Age is also important as overidentification is less likely to occur if child with chronic illness is younger than the typically developing child. Sibs may get embarrassed by the unwanted attention their sibling/family may receive (appearance, behaviors). Siblings may worry that others will conclude that they share their brothers’ and sisters’ illness and/or special needs. Adol have a very strong need to conform and may be even more susceptible to being embarrassed by a sib who looks and acts differently. Feeling Responsible- Sibs who feel responsible for the brothers’ or sisters’ illness may experience irrational, but real, gilt. They may feel they are somehow being punished for something they said, did, or thought near the time of the diagnosis. Hattem (1986) found that about 30% of siblings of pediatric cancer patients had considered the possibility that their sibling would not have become sick if they had treated their brothers or sisters differently. Survivor’s guilt- some sibs might feel a desire to trade places with their siblings. Guilt over abilities- while sibs may learn to appreciate and value their health and the advantages that come with it, they may also feel guilty for their good fortune. Sib confl is adaptive and developmentally appropriate (moderate amount of aggressive interaction is a necessary and positive part of sib relationship), however it is more likely to result in feelings of guild when a sib has chronic illness. Because of their advantages, siblings may feel they are not permitted to get angry, tease, or argue with sibs.
  • Isolation- When parents are consumed w/ one child’s illness sibs can feel neglected & isolated from parents, especially during times of stress (hospit/dx). (The only way I could get them to pay attention to me was to get mad. That would get their attention, (Collins, 1991)). In witnessing parents’ pain caused by sibs illness, sibs may not come to parents with troubles/problems. Process- Many adult siblings report growing up in families where the details of their siblings’ illness or its implications. Parents may wish to protect them from stress/sadness, and “spare” them info about siblings prognosis/needs. Parents’ sheltering or telling sibs “not to worry” can result in feeling uninvolved and uniformed. Peers- siblings often report that friends are either uninterested or unable to respond helpfully. Also challenges w/ transportation, time, etc. due to ill child. Resentment- siblings may resent attention ill sib receives, the amount of care and time the siblings require, the perceived unequal tx for children in the family, being expected to do more around house, and limitations on the family’s lifestyle (i.e., vacations). Even when sibs understand their ill sibs needs and parents’ stresses, still faced w/ dilemma of no one to blame. Unequal tx- sibs report resentment when ill sibs are indulged/overprotected, or permitted to engage in bxs unacceptable by other family members. Sibs can face the challenge of understanding that their siblings have true special needs, but still in the child/adol egocentric view of the world, resent them for having those needs. Increased responsibilities- caregiving can correspond with increase in sibling conflict and decrease in positive sibling interaction. Increased duties without the authority to carry them out. Also corresponds with a decrease in own activities outside of the home. (Stoneman et al., 1988) Pressure- Parents can pressure their children to compensate for the limitations of the child with the illness, creating resentment and anxiety for healthy sibs. Excelling may also be a way to attempt to get attention or to differentiate self from ill sib.
  • Somatic Symptoms: Higher incidence of somatic problems on many measures for siblings in families with chronic illness, i.e., stomachaches, headaches, pain, etc. Motor Skills: i.e., problems walking, standing, running, balance, playing, speed & stamina; May reflect low energy levels resulting from the distress siblings are experiencing or may be an expression of worries about their own health. Emotional Behavioral-Functioning: Approximately 50% of siblings in families with chronic illness experience significant emotional difficulties (twice as many compared to reference group) School Functioning: Siblings in a family with chronic illness aged 7-18 years experience more cognitive problems than peers (Houtzager et al., 2005). Reasons: May lack parental help with homework or Disrupted sleep. Social Functioning: Research shows that female siblings may be at particular risk for difficulties in social relationships. Parents may expect teenaged sisters to take on relatively more responsibilities in the care for the ill child- and as a result may be more restricted in social activities outside the home. (Houtzager et al., 2005; Zeltzer et al., 1996)
  • Sibs have a compelling need for info about the condition of their ill sib and its implications. They need info for reassurance, to answer their own questions and questions posed for their future. Parents may be unable to provide the information, especially initially at time of dx. Preschool- studies show that children as young as 3 can recognize siblings’ illnesses. Young children see world in terms of their own observations and experiences. Preschoolers need to know that they cannot catch their siblings’ illness, and that they didn’t cause it. Causality can be a difficult concept for a child (“catching my brother’s cold… means I can catch my brother’s CP, Cancer). School-aged children need info to answer own questions and questions of others. Ask child to explain what they know about “sister’s….” and “what caused it…” and “why do you think it happened…” Teenagers often still have specific questions about their brothers’ or sisters’ special needs. Misconceptions- how a family handles dissemination of information about the disability or illness will greatingly influence a sibling’s adjustment to the condition. Avoidance of telling sibs leads to sibs making up their own stories that will be worth than the truth. Sibs also are frequently excluded from traditional source of info: physicians, nurses, and other service providers.
  • 2) Accurate information- Information that may be obvious to adults many not be to children. One study found that about 30% of siblings worried about getting cancer themselves (Koocher & O’Malley, 1981).
  • Parentification when siblings assume increased responsibility for caregiving or housekeeping, assuming adults roles within the family at a young age Factors for increased risk for “parentification”: Birth Order- older siblings in the family system Gender- female siblings commonly take on “2 nd mother” role Single parent homes Larger families (higher child to parent ratio) Families with little extended family support Temperament and personality of siblings themselves Cultural differences Some cultures encourage/facilitate parentification as a cultural value
  • Much of the contemporary research regarding sibling coping from a medical perspective has come from the field of nursing.
  • 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> </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> </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….