Rana P, Mishra D. Quality of Life of Unaffected Siblings of Children with Chronic Neurological Disorders. Indian J Pediatr. 2015 Feb 3.
Abstract
OBJECTIVE:
To study quality of life (QoL) of the siblings of children with chronic neurological disorders.
METHODS:
Between 1st August and 30th September, 2013, 50 children aged 12-18 y, whose child sibling was suffering from a chronic neurological disorder, were enrolled (Study group). Fifty age- and sex- matched siblings of apparently non-neurologically affected children were enrolled as controls (Control group). Those with more than one affected child or any affected adult in the family were excluded. QoL was assessed by a validated version of the WHOQOL-BREF in Hindi, and QoL was compared between cases and controls.
RESULTS:
The disorders in the index cases included cerebral palsy, 18 (15 with epilepsy); autism, 15; mental retardation, 12 and epilepsy, 5. The QoL in all domains was significantly poorer in the study group as compared to the controls. 64% study group children had insufficient knowledge about their sibling's condition. More than 1/4th study subjects faced difficulties in studies, play or work. There was no difference among the groups with regard to number of siblings who had 'dropped from the school'.
CONCLUSIONS:
The QoL of unaffected siblings of children with chronic neurological disorders was significantly impaired. Health-workers may consider including older siblings of neurologically affected children during family-counseling sessions, to provide information and suggest coping strategies. This intervention is likely to improve the functioning of the family unit as a whole.
Then 23 happened, and because of life’s ever-changing and unexpected circumstances, the responsibility started to became real. My parents started talking to me about finances, about Josh living with me in adulthood, about possibly buying property and hiring staff. I had to sit in on the “tough conversations.” I learned more about what was going to happen when my parents died than any 23-year-old should ever have to know. I was constantly thinking about my future, and where and how Joshua could (and would have to) fit in. My parents began the emotional conversations with me about how to make this “burden” just a little bit easier. I was terrified.
ReplyDeleteI told you all these things: my fears, my guilt, my hopes and my dreams. I told you that I loved my brother, but sometimes I felt trapped into a lifetime of caring for him. Some days, I felt incredible guilt for not wanting the responsibility. But most days, I felt incredible joy knowing that my brother and I shared such an incredible bond through intense, unconditional love; a bond that I knew was unbreakable. Many times, as I thought about all of these things, I cried in your arms...
A few weeks later it came up again. We talked about what life would look like, and again I told you.
“You know,” I said, “I’m a package deal. I come with Josh, and that’s never going to change,” I said. “You get me, you get Josh.”
“Package deal,” you said. “Period.”...
It doesn’t scare you that when I think about houses. I always talk to you about which part Josh will live in. It doesn’t make you mad that he will live with us someday. It doesn’t make you mad that such a huge part of me is, and always will be, dedicated to him, forever. It doesn’t make you mad because you love all the parts of me, including the incredibly vulnerable parts, the parts that others might have walked away from.
You could have said no. You could have walked away. But you didn’t. You stepped into my “autism sibling” world, and you never looked back.
See: http://themighty.com/2015/04/i-told-my-partner-im-a-package-deal-he-responded-with-3-perfect-words/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=Facebook_Page
Courtesy of a colleague