At what age do well siblings start to ask questions about their ill sibling? How much information do they need or even want about their siblings’ illness?
In a study of sibling support groups, they found that there is a clear need for support groups to meet the needs of the well siblings.Naylor, A., & Prescott, P. (2004). Invisible children? The need for support groups for siblings of disabled children. British Journal of Special Education, 31(4), 199-206.
Fanos, J.H., Fahrner, K., Jeleh, M., King, R., & Tejeda, D. (2005). The sibling center; A pilot program for siblings of children and adolescents with a serious medical condition. The Journal of Pediatrics, 1(46), 831-835.
Chronically Ill Children And The Psychosocial Effects Upon
Chronically Ill Children and the Psychosocial Effects upon the Well SiblingDebora Ferrier<br />
What are the psychosocial effects on the families of chronically ill children, specifically on the ill child’s siblings? <br />Research available about mothers and fathers<br />Very little about the well sibling<br />Numerous questions about affect on well sibling<br />
Recent advances in medicine, there are a number of children surviving catastrophic injuries and illness. <br />What happens to the well sibling and where do they get the care and attention they need?<br />Naylor & Prescott (2004) state that these children are in need of some form of support group.<br />In a study of sibling support groups, they found that there is a clear need for support groups to meet the needs of the well siblings.<br />
[<br />Well siblings are often overlooked by pediatricians because they are focused on the ill child. <br />Information about a sibling’s illness may be one area that the well sibling lacks and needs. If parents are not comfortable with explaining the illness to their well children then the children can feel isolated and lost as to what is happening. The well sibling may cope better and feel less isolated if they are given the information they need about the illness and the prognosis for their ill sibling <br />Fanos, Fahrner, Jelveh, King, Teejda, 2005 started a pilot program that assessed the needs of families with a particular look at the well sibling. Fanos et al.<br />
A qualitative research study conducted in a pediatric ICU shows that the giving of information to the well child is a key in that child’s understanding and well being(Kleiber, Montgomery, & Craft-Rosenberg, 1995). <br />Most of the information given to the well child was about the technology encountered and descriptions of the ill child’s appearance<br />
If a child asks a specific question about their siblings’ illness it should be answered in a way the child will understand. The answers should be age appropriate according to Bellin and Kovacs (2006). They state that the impact of a child’s health condition on the family is not altogether negative. They found that some family members and whole families come through the experience stronger and more resourceful.<br />
Most studies focus on the negative effects to a family of a chronically ill child. Many have found that there are positive aspects also (Williams, Williams, Hanson, Graff, Ridder, & Currey, et al. 1999; Williams, Williams, Hanson, Stanton, & Hafeman, et al, 2002; Giallo, & Gavidia-Payne, 2006; Thompson, Curtner, O’Rear, 1994; Barlow, & Ellard, 2006). There is a lack of consensus in all the studies. This could be due to the different sizes of the study groups or it could be that the studies are looking at the wrong aspects. What has been found is that there is a lot of confusion and contradiction in the literature (Sharpe, & Rossiter, 2002).<br />
Sharpe & Rossiter found that pre-1980’s research showed little of the current views of disability. On an encouraging note, they found more studies relating to the well sibling in the last decade. In their literature review, they found that family dynamics play a large role in the children’s adaptability, as did Thompson, Curtner, & O’Rear (2006). In their review, they state that family structure, child characteristics, and parents’ differential treatment are deciding factors in the psychosocial adjustment of the well sibling.<br />
.<br />Socioeconomic factors have been found to play a large part in the adjustment of a family and in particular the well sibling (Thompson, et al, 1994; Giallo, et all, 2006). In the Thompson, et al, research, they found the same results for siblings in well families as in siblings of an ill child. They show that the same risk factors are associated with the psychosocial adjustment of siblings with well children as siblings with chronically ill children. In the discussion they state that the results found that the siblings of well children are at no greater risk for psychological problems. One factor of this study that is quite interesting is that, whether there was an ill sibling in the family or not, married mothers stated that their daughters were headstrong and that siblings of healthy children’s mothers reported more adjustment problems. <br />
In 1983, Milton Seligman stated that the question of whether a normal sibling is affected negatively or positively by a handicapped sibling is largely unanswerable. He states that it is almost impossible to determine the factors which contribute to the situation. Even in families without the added stress of a chronic illness, some families’ emotional climate is normally very stressful. He claims that it is a great mistake to think that siblings are adversely affected by the presence of a handicapped sibling. Some siblings come through stronger and more emphatic and are sometimes influenced so positively that they choose a career in a field where they can be helpful to others. Seligman states that more research is needed before any conclusions can be made.<br />
Every one of these papers focused on the families of chronically ill children, particularly the well sibling and what those children’s needs are. They spoke of support groups, information sharing and fostering resilience in these children and their families. All agreed that the well siblings of chronically ill children have unspoken needs that they are reluctant to express to their parents. Each paper suggests that much more research in this area is needed before there is an understanding of the needs of the well child. Much attention is given to the ill child and parents needs but very little thought is given to the well child’s needs.<br />
There is a consensus that all the research is inconclusive and that a lot more research is needed. All of the papers were contradictory and some found that using the same parameters with “normal” families as used for the target families came up with the same conclusions. What I found was that if you took out the well sibling category many of the findings could fit families without the chronic illness. One thing that I feel should be done is to speak to the well sibling directly at whatever age they are at diagnosis, a few years in and then once again when they are adults. Asking them face to face may be the only way to come up with factors that did affect their psychosocial adjustment. As the mother of a chronically ill child with healthy children I have been able to ask them as adults what it felt like and their responses have been very enlightening.<br />
References<br />Barlow, J.H., & Ellard, D.R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings; An overview of the research evidence base. Child Care, Health & Development, 32(1), 19-31.<br />Bellin, M.H., & Kovacs, P.J. (2006). Fostering resilience in siblings of youths with a chronic health condition: A review of the literature. Health & Social Work, 31(3) 209-216.<br />Fanos, J.H., Fahrner, K., Jeleh, M., King, R., & Tejeda, D. (2005). The sibling center; A pilot program for siblings of children and adolescents with a serious medical condition. The Journal of Pediatrics, 1(46), 831-835.<br />Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50(12), 937-948.<br />Houtzager, B.A., Grootenhuis, M.A., Caron, H.N., & Last, B.F. (2005). Sibling self-report, parental proxies, and quality of life; The importance of multiple informants for siblings of a chronically ill child. Pediatric Hematology and Oncology, 22, 25-40<br />Kleiber, C., Montgomery, L.A., & Craft-Rosenberg, M. (1995). Information needs of the siblings of chronically ill children. Children’s Health Care, 24(1), 47-60.<br />Murray, J.S. (1998(. The lived experience of childhood cancer: One sibling’s perspective. Issues in Comprehensive Nursing, 21, 217-227.<br />Naylor, A., & Prescott, P. (2004). Invisible children? The need for support groups for siblings of disabled children. British Journal of Special Education, 31(4), 199-206.<br />
[<br />Prchal, A., & Landolt, M.A. (2009). Psychological interventions with siblings of pediatric cancer patients: a systematic review. Psycho-Oncology, 18, 1241-1251.<br />Seligman, M. (1983). Sources of psychological disturbance among siblings of handicapped children. The Personal and Guidance Journal, May, 529-531<br />Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology, 27(8), 699-710.<br />Thompson, A.B., Curtner, M.E., & O’Rear, M.R. (1994). The psychosocial adjustment of well siblings of chronically ill children. Children’s Health Care, 23(3), 211-226.<br />Williams, P.D., Ridder, E.L., Setter, R.K., Liebergen, A., Curry, H., Piamjariyakul, U., & Williams, A.R. (2009). Pediatric chronic illness(cancer, cystic fibrosis) effects on well siblings: Parents voices. Issues in Comprehensive Pediatric Nursing, 32, 94-113.<br />Williams, P.D., Piamjariyakul, U., Graff, J.C., & Stanton, A. (2010). Developmental disabilities: Effects on well siblings. Issues in Comprehensive Nursing, 33, 39-55.<br />Williams, P.D., Williams, A.R., Hanson, S., Graff, C., Ridder, L., & Curry, H., et al. (1999). Maternal mood, family functioning, and perceptions of social support, self-esteem, and mood among siblings of chronically ill children. Children’sHealth Care, 28(4), 297-310.<br />Williams, P.D., Williams, A.R., Graff, J.C., Hanson, S., Stanton, A. , & Hafeman, C., et al. 2002). Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioral Medicine, 25(5), 411-424.<br />