THE SIBLING CENTER: A PILOT PROGRAM FOR SIBLINGS OF CHILDREN .... Center. When the family phones, the clinical supervisor assigns the family to the appropriate therapist. In keeping ... the initial phone call. There were two children, ...
INVITED COMMENTARY
THE SIBLING CENTER: A PILOT PROGRAM FOR SIBLINGS OF CHILDREN AND ADOLESCENTS WITH A SERIOUS MEDICAL CONDITION JOANNA H. FANOS, PHD, KATHLEEN FAHRNER, PHD, MOJGAN JELVEH, PHD, RICHARD KING, MA, AND DAVID TEJEDA, MD
iblings of children with serious illness are at risk for long-term psychosocial difficulties; their needs are not routinely addressed in current medical practice. The pediatrician, by necessity, focuses on the ill patient, and it is difficult to expand that focus to include the needs of the sibling. Spinetta et al1 published guidelines that outlined general principles for helping siblings throughout various phases of cancer; yet sibling needs remain unaddressed in medical centers. Physicians face increasing pressure to see more patients in less time while simultaneously being asked to expand the scope of their responsibility to include family centered care, with little or no training to do so. The social worker provides an advocacy role for the patient and the parents but rarely has resources to provide support for the well sibling; the psychologist or psychiatrist is called on only on dire occasions. Family-centered care often translates to responding to parental needs and neglects sibling concerns. To support the emotional needs of siblings of children with various chronic/serious conditions, we recently established the Sibling Center at our medical center. This pilot program pioneers a psycho-educational model for siblings of children with serious medical illness.
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RESEARCH BACKGROUND AND SCOPE OF THE PROBLEM There are immediate and long-term emotional, behavioral, physical, and psychosocial effects of having a sibling with a childhood illness.2-9 Serious long-term effects were noted in a sample of 75 adults who had grown up with a sibling affected by cystic fibrosis, including survival guilt; global anxiety; fear of an early death for themselves; fear of intimacy; excessive concerns for others; heightened sense of vulnerability; somatic expressions, including headaches, ulcers, or ‘‘identification illnesses’’ that mirror symptoms of cystic fibrosis; and sleeping difficulties, including severe nightmares.10,11 Psychosocial issues for siblings include resentment, anger, anxiety, depression, jealousy, and guilt; fear of the patient’s death; fear of their own death; psychologic and physical isolation from parents; and behavioral problems.11-15 Certain subsets of children are at increased risk for adjustment problems.3,16,17
Family Communication Many families with a chronically ill child tend not to communicate about the disease.11,18-24 The demand of keeping a family secret is a heavy burden for a young sibling and can threaten healthy development. There is often much anger expressed at parents as a consequence of feeling excluded from disclosure. Studies of siblings of children with cancer have shown that children coped better and felt less isolated when they were informed about the illness and the treatment program.25 Families who communicate well before the death of a child tend to communicate well after the death; this communication is indicative of how well a surviving sibling will adjust to the loss.26 Family secrets can lay the groundwork for traumatic responses to the illness and death.27 Siblings may not be able to grieve the loss until the traumatic aspects are resolved.28 Clinicians frequently have little information on how parents actually communicate the news of fatal illness to their children, particularly siblings. An important question in families with a fatally ill child is: Who tells the children? As Davis29 pointed out in his study of families with a child with polio, explanations offered by physicians are frequently confusing and veiled with ambiguity. It is the pediatrician who often suggests to the family that they treat the child and the illness as ‘‘normal as possible,’’ which is in fact good for the patient. The impact on siblings, however, of growing up within a family in which an exceptional situation is treated as if it were normal is of questionable value. It may set a pattern in which dissociation from the illness experience is reinforced in order for the sibling to continue with ‘‘normal’’ developmental tasks.
From Research Institute and Department of Pediatrics, California Pacific Medical Center, San Francisco, California. Supported by a grant from the California Pacific Medical Center Foundation. The authors are employees of California Pacific Medical Center and work as administrators and clinicians on the Sibling Center program. Submitted for publication Mar 6, 2004; revision received Aug 11, 2004; accepted Dec 13, 2004. Reprint requests: Joanna H. Fanos, PhD, Department of Pediatrics, Dartmouth Medical School, One Medical Center Drive, Lebanon, NH 03756. J Pediatr 2005;146:831-5. 0022-3476/$ - see front matter Copyright ª 2005 Elsevier Inc. All rights reserved. 10.1016/j.jpeds.2004.12.029
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School Difficulties The well child may have trouble with concentration while at school because he or she is distracted by worries about life at home. Difficulty may also arise because the sibling may have frequent school absences. This may be due to the sibling’s desire to spend time with the sick brother or sister or the family’s need for the sibling to baby-sit for other children on clinic appointment days.14
Impact of Parental Mourning on Siblings Parental accessibility for the support of the surviving sibling is vital to the adjustment process.30 Parental preoccupation with their own grief can have consequences for surviving children. Horowitz31 found survivors unable to cope effectively with the present because they were busy trying to assimilate the past. Pound32 reported the depressed mother to be considerably impaired in her role. Siegel and Gorey33 discussed parental mourning in detail. Recent data on responses of parents grieving the loss of their child suggest that parents grieve for much longer periods of time than was assumed.34 Frequent responses include idealization, substitution, memorialization, and refocusing on the surviving child, with profound consequences for the sibling’s identify and self-esteem.11,22,35 About 18% of children in the United States have a chronic medical condition.36,37 Many of these have a condition severe enough to affect daily life. The scope of the problem can be seen in the burgeoning body of support groups for siblings such as Sibshops,38 children’s books with such informative titles as I Wish I was Sick Too39 and What about Me? When Brothers and Sisters Get Sick,40 as well as web sites for sibling support (eg, ‘‘Band-aides and Blackboards’’ and ‘‘The Sibling Connection’’). Although web-based Internet and group support can be helpful, it does not provide oneto-one counseling with a professional over time, nor is it readily available within the pediatric setting. The Sibling Center was developed to fill this gap.
Goals of the Program Since this is a pioneering program, there was no ready model to guide the structure of the program. Significant differences exist from a model of traditional psychotherapy in that this is a program identifying at-risk well siblings. The mission was identified as a form of psycho-education, which included psychosocial support, targeted interventions, resource identification, and consciousness-raising.
DESIGN OF THE SERVICE The program is viewed conceptually as a developmental model rather than a psychiatric one, and since siblings are at risk rather than clinically distressed, the most appropriate department was identified as Pediatrics, specifically the Child Development Center. In addition, the location should be an integral part of the pediatric clinic, with which families were already familiar and comfortable. This averted the risk of ‘‘diagnosing’’ and potentially pathologizing the sibling. Our 832
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hospital’s usual informed consent form was reviewed and found to be appropriate.
Training/Supervision Therapists are selected from trainees in the Child Development Center who are completing licensure hours. Trainees receive an educational seminar presenting research findings on sibling responses to illness. Group supervision takes place once a week and includes families seen for individual treatment during that week. In those meetings, dual supervision takes place: The therapist presents the family, goals of treatment, progress, and so forth; the clinical supervisor oversees in terms of therapy progress; the director suggests ways in which that specific medical condition would affect the family or might be viewed by the sibling—for example, is the condition life-threatening or not, visible or not, genetic or not, and so forth. The director also serves as a link to medical information related to that disorder.
Structure of the Clinical Service The sequence is as follows: The pediatrician/social worker/nurse practitioner informs the family about the Sibling Center. When the family phones, the clinical supervisor assigns the family to the appropriate therapist. In keeping with a developmental, preventive model, we take the stance that the siblings are not disturbed but at risk and therefore seek no diagnostic labels. We have a four-session model of intervention. In session 1, the therapist meets with parents and well siblings for evaluation and treatment plan development. The therapist seeks specific details concerning the illness, including parental experience of realizing their child was ill, receiving the diagnosis, and communication within the family about the illness. These assessments, combined with assessments of the children, lay the groundwork for the treatment protocol. In sessions 2 and 3, well siblings meet alone with the counselor to identify communication difficulties in the family, to alleviate emotional distress, and to strengthen coping skills. Children and adolescents are seen in rooms supplied with play therapy equipment, including toys and dolls. Session 4 is divided into two parts. The first half is with the sibling alone and the second is with the parents also present to review and develop future plans and to reconstitute the family before it leaves the therapy session. Approximately 6 months after the last session, the therapist sees the family to review the emotional needs of the well sibling. If significant distress is identified for a sibling or parent, the therapist assists the family in identifying an appropriate therapist, based on insurance constraints and geographic proximity.
EXPERIENCE TO DATE AND CASE EXAMPLES Referrals We included pediatric medical conditions that would be expected to cause the family to realign around the sick child to The Journal of Pediatrics June 2005
the neglect of the well sibling. This would include severe asthma, congenital heart disease, cystic fibrosis, cancer, blood diseases, diseases of neonates, and transplantation. Our referral network has been educational in itself. We first targeted pediatric subspecialists, but found referrals slowgoing. They concentrate by necessity on the ill patient and it is extremely difficult to expand that focus to include the needs of the sibling. When a pediatrician did refer a family and that family expressed gratitude to the physician for the help received, that physician tended to refer more families. Some families have referred themselves after finding a Sibling Center brochure in the hospital and specialty clinic lobbies.
Outcome Assessment We designed a form to evaluate how well the Sibling Center is meeting the needs of its families. There are seven core questions. Five questions have response options ranging from extremely satisfied (5) to not satisfied (1); two had yes/no responses; we also include an open-ended probe: ‘‘What other comments or suggestions would you like to share with us about the Sibling Center?’’ Preliminary data suggest a very positive response; open-ended comments include reports of less angry acting-out sibling behavior, improved family communication, and gratitude for the help given.
Impact on Therapists At first, the therapists were concerned about their ability to handle such emotionally difficult material that would be elicited by a seriously—perhaps fatally—ill child. However, as they began to work with actual families, their confidence quickly grew, and they reported finding this work extremely rewarding. Trained in longer-term therapy, and in particular with families of children with developmental disabilities or learning differences, they were surprised and heartened at how this focused intervention was able to effect considerable change in family functioning. They found the time-limited model refreshing—it created boundaries, particularly reassuring in such emotionally difficult situations as pediatric cancer. Similar to the one-time in-depth clinical research interview,11,41 or even the one-time session by a highly experienced psychoanalyst,42 the Sibling Center’s short-term model was professionally encouraging, as can be seen in the following two examples.
Family 1 This family was self-referred, with the father making the initial phone call. There were two children, 4-year-old Michael, recently diagnosed with a chronic kidney disorder, and 6-year-old Sarah. In the first session, the parents discussed various instances of Sarah’s acting out, arising from her jealousy of the time the parents spent with Michael at his doctors’ appointments and giving him medication. In the following week, major themes introduced by Sarah focused on issues of jealousy—wanting to take his medicine and to have her own doctor’s appointments and time with her mother. The therapist invited Sarah to choose a sticker to take home, and The Sibling Center: A Pilot Program For Siblings Of Children And Adolescents With A Serious Medical Condition
she selected one, stating ‘‘I’ll take this one, because I know Michael likes it.’’ In the following sessions, the therapist focused on ways to limit the impact of Michael’s illness on Sarah. Sarah directly asked her mother if she could have a little time every week alone with her, and Mom readily complied. The therapist noted that Sarah had blossomed in her appointments at the Sibling Center and that one reason she loved coming was that she had her own ‘‘appointment.’’
Family 2 The mother phoned for help with her 13-year-old daughter Jenny. Jenny’s 16-year-old sister Connie was diagnosed with a metabolic disorder 5 years prior. In the first session, the mother explained she believed they were in crisis in terms of how she and her daughter were getting along. She described Jenny as insecure and emotional and Connie as the ‘‘brilliant one.’’ The therapist suggested that their comparing the sisters was threatening Jenny’s self-esteem. Dad thought it was significant that they had come together on Jenny’s behalf for once, rather than for Connie. In the second session, Jenny reported that her relationship with her parents had improved, although she still spent a lot of time alone. Mom stated she had never realized how much they had been comparing their two daughters with each other and that she had made a conscious effort not to do so. The therapist recommended that they initiate more family activities so Jenny would not be spending so much time alone. Although they had come to only two sessions, both parents and Jenny believed that they did not need to be seen any more at this time.
CONCLUSIONS These cases illustrate typical responses on the part of parents to having an ill child and feelings of the well siblings. A common thread for these siblings has been jealousy, whether actively admitted to or not, and attention-seeking behavior. Another thread was the proclivity of the well sibling—even so young as 6 years old—to put the ill sibling’s needs before his or her own. Our major intervention has been to define this situation as challenging, to increase awareness that well siblings are at risk, and that acting-out behavior has a communicative purpose; therefore, the major role has been educational. Second, the sibling’s relationship with the therapist has proven to be crucial, as it signified to siblings that this was their appointment, their time. One of the most useful recommendations—and the most concrete—has been that the parent would spend at least some time alone with the well sibling. For some siblings, this involved a cherished shared activity; for others, it was the sheer time alone with the parent that was so meaningful. At times of acute crisis such as hospitalizations, some families made promises to the well sibling that this would happen the following week, and honored them. It is likely that private psychotherapy would be effective as well. However, the sibling may be labeled as having ‘‘problems’’ rather than being ‘‘at risk.’’ In addition, many families who would not seek therapy because of a perceived 833
stigma or prohibitive costs may accept a program such as ours. In fact, the Sibling Center has served as a bridge to ongoing therapy for families who would not have considered therapy had they not had this experience. Our preliminary results as well as outcome data from a residential camp intervention for siblings and parents43 and a sibling-parent group intervention44 have showed significant improvement for siblings. We developed our Sibling Center within the resources, strengths, and limitations of our particular institution. Each institution will have to decide how best to implement such a program, the particular setting, key players, and so forth, but we offer our decisions and experiences thus far as a guide. It was encouraging that even therapists somewhat new to the field have been able to effect considerable change in a relatively short period of time. Ideally, it would be preferable to prevent sibling problems from the beginning of identification of the ill child by the medical team. Perhaps proactively raising parental awareness of the potential for siblings to have problems and/or extending an invitation for someone on the medical team to meet with the siblings to help them understand the disease could be cost-effective in clinics that do not have the capacity to develop a more substantial program. This intervention could be evaluated for its effectiveness. In conclusion, we urge pediatricians to include siblings of ill children in their models of family-centered care and to develop interventions to avert long-term distress. The authors gratefully acknowledge the support of Martin Brotman, MD, Warren Browner, MD, MPH, David Fielder, Suzanne Giraudo, PhD, George Lee, MD, Jerry Mapp, Karen Norman, OTR, and Joe Walker, MD, without whom this program would not have been possible. William Boyle, MD, and Janice Kim helped edit the manuscript. Names of individuals have been changed to preserve confidentiality. Most of all, we thank the families, who, in the face of considerable existing medical challenges, have turned their attention to their other children.
REFERENCES 1. Spinetta JJ, Jankovic M, Eden T, Green D, Martins AG, Wandzura C, et al. Guidelines for assistance to siblings of children with cancer: Report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Med Pediatr Oncol 1999;33:395-8. 2. Balk DE. The self-concepts of bereaved adolescents: Sibling death and its aftermath. J Adolesc Res 1990;5:112-32. 3. Ferrari M. The diabetic child and well sibling: Risks to the well child’s self-concept. Child-Health Care 1987;15:141-8. 4. Koch A. ‘‘If only it could be me’’: The families of pediatric cancer patients. Fam Relat 1985;34:63-70. 5. Koch-Hattem A. Siblings’ experience of pediatric cancer: Interviews with children. Health Soc Work 1986;11:107-17. 6. Martinson IM, Campos RG. Adolescent bereavement: Long-term responses to a sibling’s death from cancer. J Adoles Res 1991;6:54-69. 7. Spinetta JJ. The sibling of the child with cancer. In: Spinetta JJ, DeasySpinetta P, eds. Living with Childhood Cancer. St Louis: Mosby; 1981. p. 133-42. 8. Tritt SG, Esses LM. Psychosocial adaptation of siblings of children with chronic medical illnesses. Am J Orthopsychiatry 1988;58:211-20. 9. Vance JC, Fazan LE, Satterwhite B, Pless IB. Effects of nephrotic syndrome on the family: A controlled study. Pediatrics 1980;65:948-55. 10. Fanos JH, Nickerson BG. Long-term effects of sibling death during adolescence. In: Balk D, ed. Death and adolescent bereavement [Special Issue]. J Adolesc Res 1991;6:70-82.
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11. Fanos JH. Sibling Loss. Mahwah (NJ): Lawrence Erlbaum; 1996. 12. Breslau N, Prabucki K. Siblings of disabled children: Effects of chronic stress in the family. Arch Gen Psychiatry 1987;44:1040-6. 13. Davies EB. The family environment in bereaved families and its relationship to surviving sibling behavior. Child Health Care 1988;17:22-31. 14. Fanos JH, Wiener L. Tomorrow’s survivors: Siblings of human immunodeficiency virus-infected children. J Dev Behav Pediatr 1994; 15(Suppl 3):S43-8. 15. Fanos JH, Davis J, Puck JM. Sib understanding of genetics and attitudes toward carrier testing for X-Linked severe combined immunodeficiency. Am J Med Genet 2001;98:46-56. 16. Cadman D, Boyle M, Offord DR. The Ontario Child Health Study: Social adjustment and mental health of siblings of children with chronic health problems. J Dev Behav Pediatr 1988;9:117-21. 17. Cowen L, Mok J, Corey M, MacMillan H, Simmons R, Levison H. Psychological adjustment of the family with a member who has cystic fibrosis. Pediatrics 1986;77:743-53. 18. Fanos JH, Johnson JP. Perception of carrier status by cystic fibrosis siblings. Am J Hum Genet 1995;57:431-8. 19. Fanos JH, Johnson JP. Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing. Am J Med Genet 1995;59:85-91. 20. Fanos JH. The missing link in linkage analysis: The well sibling revisited. Genet Test 1999;3:273-8. 21. Fanos JH. ‘‘My Crooked Vision’’: The well sib views ataxiatelangiectasia. Am J Med Genet 1999;87:420-5. 22. Fanos JH, Puck JM. Family pictures: The impact of growing up with a brother with X-linked severe combined immunodeficiency. Am J Med Genet 2001;98:57-63. 23. Hardy MS, Armstrong FD, Routh DK, Albrecht J, Davis J. Coping and communication among parents and children with human immunodeficiency virus and cancer. J Dev Behav Pediatr 1994;15(Suppl 3):S49-53. 24. Spinetta JJ, Maloney LJ. The child with cancer: Patterns of communication and denial. J Consult Clin Psychol 1978;46:1540-1. 25. Kramer RF. Living with childhood cancer: Impact on the healthy siblings. Oncol Nurs Forum 1984;11:44-51. 26. Birenbaum LK, Robinson MA, Phillips DS, Stewart BS, McCown DE. The response of children to the dying and death of a sibling. Omega 1989;20: 213-28. 27. Van der Kolk BA. Psychological trauma. Washington, DC: American Psychiatric Press; 1987. 28. Eth S, Pynoos RS. Interaction of trauma and grief in childhood. In: Eth S, Pynoos R, eds. Post-traumatic stress disorder in children. (Progress in Psychiatry series, Spiegel, series ed.). Washington: American Psychiatric Press; 1985. p. 169-86. 29. Davis F. Passage through Crisis: Polio Victims and their Families. Indianapolis (IN): Bobbs-Merrill; 1963. 30. Rosen H. Unspoken Grief: Coping with Childhood Sibling Loss. Lexington (MA): Lexington Books; 1986. 31. Horowitz MJ. Stress Response Syndromes. North Vale (NJ): Jason Aronson; 1986. 32. Pound A. Attachment and maternal depression. In: Parkes CM, Stevenson-Hinde J, eds. The Place of Attachment in Human Behavior. New York: Basic Books; 1982. p. 118-30. 33. Siegel K, Gorey E. Childhood bereavement due to parental death from acquired immunodeficiency syndrome. J Dev Behav Pediatr 1994;15(Suppl 3): S66-70. 34. Wortman CB, Silver RC. The myths of coping with loss. J Consult Clin Psychol 1989;57:349-57. 35. Fanos JH, Mackintosh MA. Never again joy without sorrow: The effect on parents of a child with ataxia-telangiectasia. Am J Med Genet 1999;87: 413-9. 36. Newacheck PW, Taylor WR. Childhood chronic illness: prevalence, severity, and impact. Am J Public Health 1992;82:364-71. 37. Gortmaker SL, Walker DK, Weitzman M, Sobol AM. Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Pediatrics 1990;85:267-76. 38. Meyer DJ, Vadasy. PF. Sibshops: Workshops for Siblings of Children with Special Needs. Baltimore: Paul H. Brookes; 1994.
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39. Brandenberg F. I Wish I was Sick, Too! New York (NY): Penguin Putnam Books for Young Readers; 1978. 40. Peterkin AD. What About Me? When Brothers and Sisters Get Sick. Washington DC: American Psychological Association; 1992. 41. Weiss R. Learning from Strangers. New York: Free Press; 1994. 42. Renik O. The patient’s experience of therapeutic benefit. Psychoanalytic Q 2001;70:231-41.
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43. Williams PD, Williams AR, Graff JC, Hanson S, Stanton A, Hafeman C, Liebergen A, et al. A community-based intervention for siblings and parents of children with chronic illness or disability: The ISEE study. J Pediatr 2003;143:386-93. 44. Lobato DJ, Kao BT. Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. J Pediatr Psychol 2002;27:711-6.
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