It is a recurring phenomenon in parents whose children are diagnosed with cognitive disability or type I diabetes. Periods of happiness are interspersed with a resurgence of the sorrow that is a constant. Despite the fact that they adapt…
For parents of children with cognitive disability or those diagnosed with type I diabetes it is a lifelong condition interspersed with periods of satisfaction. This sorrow is akin to that experienced on the demise of a dearly loved one. However there is never a sense of closure as when one mourns a departed soul.
Triggers such as hospitalization or anxiety about the result of poor control in managing the disease bring about a revival of sorrow. Later the sense of being cut off when children transition from the pediatric clinic to the adult clinic makes parents feel cut off and anxious about their children’s ability to manage on their own. Just as in chronic sorrow the parents of children with cognitive disability feel the guilt and grief of their child not being like other normal children, especially as they grow older and their abilities degenerate; so too parents of children with type I diabetes revisit their grief as anxiety mounts when they come across another patient who has had to undergo an amputation, or reading about or viewing the many risks of complications that could arise.
Parents overwhelmingly agree that emotional support and reassurance from health care professionals is necessary to see them through difficult periods. “Greater understanding of parents’ long-term emotional responses and recognition that grief may never resolve in these parents may enable healthcare professionals to provide appropriate and timely support at critical times” opine Bowes, Lowes, Warner and Gregory (Bowes et al, 2009) Another suggestion for nursing practitioners was that the transition from the pediatric to adult clinic could be gradually achieved to minimize the sense of losing control which parents feel as they are not part of the consultations at the adult clinic. Perhaps if this was done in a phased manner parents would gradually get used to the fact that their children were old enough to manage on their own.
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