But most chronic illnesses and disabilities are not visual and often health challenges fall off the diversity radar. The international symbol of disability is a mischaracterization of reality. That symbol is a white stick figure in a wheelchair against a blue background. Another misconception is that chronic disease is really an issue for the very elderly. The facts belie that misconception. Today in the US 8,, children have multiple sclerosis and another 10,, experience disorders that may be related to multiple sclerosis.
These are real issues. For those living with chronic illness to properly address their planning, they will need to meet with their professional advisers. If those meetings themselves present an impediment to planning, instead of help, the planning is unlikely to proceed well. It is incumbent upon clients living with chronic disease to explain their situation to the professionals before they meet.
If accommodations are needed, you should ask up front for them. Even those who are empathetic may just not foresee the minor accommodations that might make your meeting with them easier and more fruitful.
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For some, planning shorter, separate meetings, rather than one long meeting might be easier. If you have fatigue or cognitive issues request that the adviser provide an agenda and bullet list for the meeting. That might help you focus as the meeting progresses. Current Perspectives on the Anxiety Disorders.
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The influence of two other methodological moderator variables was considered: parent reports versus child self-reports and comparison data versus normative data. In the first case, parental reports were decidedly more negative than child self-reports. Children may not perceive any negative effects or may deny such effects until adulthood. Conversely, parents may be overprotective of their children or may be overly sensitive to negative outcomes.
Collaborative data from fathers and mothers of the siblings and from unbiased observers are needed to address this question. In the second case, siblings of children with a chronic illness fared better relative to a control group than when compared to normative data. Some authors went to considerable effort to ensure equivalency between sibling and control participants.
Silver and Frohlinger-Graham , for example, recruited female sibling and control group participants from the same university medical center and matched for sibling age, gender, birth order, and age spacing. Given heterogeneous effect sizes and negative effects after partitioning by methodological moderator variables, a number of substantive moderator variables were considered. Classification of dependent measures into discrete categories revealed psychological functioning, peer activities, and cognitive development were associated with negative mean effect sizes.
Consistent with Rossiter and Sharpe's meta-analysis of siblings of individuals with intellectual disabilities, the sibling relationship was the one category associated with a positive though not significant effect size. The sibling relationship is paradoxical, incorporating both conflict and companionship.
Although having a sibling with a chronic illness may be associated with difficulties across a number of domains, the sibling relationship may be resilient and perhaps even enhanced in the context of disability. One can only speculate as to why the brothers and sisters of children with a chronic illness respond by internalizing their difficulties. A caretaker role involves the sibling as a quasi-parent, participating in such activities as feeding and dressing their sibling.
Frustrations arising from parental inattention or caretaking responsibilities may not be easily externalized by the healthy sibling into behaviors such as aggression, given the precarious health status of their brother or sister. A second substantive variable that was considered was the nature of the chronic illness itself. Lavigne and Faier-Routman suggest that it is not the features of any specific disease that most affect psychological functioning, but rather features that vary across childhood chronic diseases, such as whether the disease is life-threatening.
In this study, no difference was found in the functioning of siblings when their brother or sister had a more or less severe i. However, siblings of children that have a chronic illness that affects their day-to-day functioning e. Again, this alludes to the central role of caregiving demands and the amount of parental attention required by a child with a chronic illness. As better methods of quantifying disease severity are developed, future researchers should investigate further the impact of disease factors on psychological functioning of siblings.
Lavigne and Faier-Routman's meta-analysis of 87 studies of children with a chronic illness produced results strikingly parallel to our findings from the sibling literature. Lavigne and Faier-Routman found negative effects for overall adjustment and for measures of internalizing behaviors, externalizing behaviors, and self-concept. Larger effect sizes were found for internalizing behaviors over externalizing behavior, and for studies that employed normative comparisons over control groups. Lavigne and Faier-Routman also concluded the risk for psychological problems varied by disease.
Any meta-analysis is limited by the nature and number of primary studies, the data reported, the variables assessed, and the design of those primary studies.
All the studies in this meta-analysis were published, so our results should not be generalized to unpublished research. One last limitation is that our examination of moderator variables employed what is fundamentally a correlational technique to evaluate the results from primary studies that assessed preexisting groups. On that basis, we cannot conclude there is a causal relationship between adjustment problems and having a sibling with a chronic illness. One fear often expressed regarding meta-analysis is that a quantitative review may inhibit future research by prematurely closing an area of inquiry Boden, To the contrary, we believe this meta-analysis highlights the need for more, not less, research into the psychological functioning of siblings of children with a chronic illness.
We would also hope that more consideration will be given to features of specific chronic childhood illnesses. There is also the need for studies of adult siblings of individuals with a chronic illness and efforts to seek positive long-term consequences such as greater empathy and a better understanding of individuals with disabilities. Family dynamics are an intriguing and often complex set of relationships and even more so when a child in a family is born with or develops a chronic physical illness.
Families experiencing childhood chronic illness must adapt to caregiving burdens, stress, and anxiety demands. Clinicians working with the families of children with chronic illnesses need to be aware that siblings are at some risk for negative psychological effects. In a recent meta-analysis, Kibby et al. These programs could be expanded to the siblings and families of children with a chronic illness. The results from this meta-analysis suggest that one focus for interventions should be internalizing behaviors such as anxiety and depression.
Future research should explore the effectiveness of these interventions to assist the brothers and sisters of children with a chronic illness. We thank Cathy L. Faye and three anonymous reviewers for their comments and suggestions. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide.
Sign In or Create an Account. Sign In. Advanced Search. Article Navigation. Close mobile search navigation Article Navigation. Volume Article Contents. E-mail: sharped uregina. Oxford Academic. Google Scholar. Lucille Rossiter, MA.
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Article history. Revision Received:. Cite Citation. Permissions Icon Permissions. Abstract Objective: To review the literature pertaining to the siblings of children with a chronic illness. Table I.
- Chronic Illness.
- Chronic Illness.
View Large. Table II. Begg, C. Boden, W. Boyce, G. The effects of mental retardation, disability, and illness on sibling relationships: Research issues and challenges.
When should the family seek help?
Cohen, J. Cohen, M. Cooper, H. Cuskelly, M. Faux, S. Gold, J. Gold, N. Hall, J. Hannah, M. Hedges, L. Howe, G. Jackson, P. Johnson, B. Kibby, M. Lamorey, S. Lavigne, J. Lenton, S. Lobato, D. McKeever, P. Newacheck, P. Packman, W.