Essay On United Leukodystrophy

population. There is a clear need for research with the intent of decreasing stress among parents to not only improve their quality of life, but also to improve the stability of the family unit, the quality of care that the patient receives and the ability of the caregiver to function in other facets of life like work or parenting other children. Under great psychological duress and possibly facing physiological consequences from the chronic stress of caregiving, parents may develop a decreased capacity for caregiving, and the declining levels of care spells worse symptom management for the patient, which in turn increases the stress on the caregiver in a vicious cycle. Better maternal care from a mother who acts as the primary caregiver has been correlated with reduced pain for her chronically ill child (Kankkunen). In order to achieve the optimal quality of life for both patient and caregiver, the caregiver’s stress must be adequately managed. For this research proposal, caregivers of children with life-limiting neurodegenerative diseases have been singled out because this population has high self-reported levels of chronic stress and resulting emotional and physical distress on the body (Labbe). …show more content…
The United Leukodystrophy Foundation would be a good contact point for obtaining participants for the study, singling out the parents of patients most likely to die within the first decade of life. These patients are most likely to have severely impairing disabilities that would cause the greatest quality of life decrease for their caregivers. It is imperative that research is done to improve the quality of life for these patients and families by decreasing the effect that stress has on these