Living with dying: families coping with a child who has a neurodegenerative genetic disorder

The impact on a family where a child has been diagnosed with a neurodegenerative genetic disorder is enormous. The anguish that accompanies parents from pre-diagnosis to diagnosis to acute care to palliative care is tremendous. As well, the realization that a genetic disorder has affected one child, leads to the possibility that other family members may also be affected. Yet, given the amount of stress on most of these families, they are extremely resilient, and employ a variety of coping strategies to manage the situation. This paper focuses on the results of a questionnaire completed by 15 families. The questionnaire addressed the following research questions: 1) What are the unique features of the losses associated with a neurodegenerative genetic disorder?, 2) What are the coping strategies that families employ to manage the losses associated with a child who has a neurodegenerative genetic disorder?, 3) What support resources are required to better assist families to cope with a child who has a neurodegenerative genetic disorder?. Analysis of data revealed that families employ a variety of coping strategies to manage their day to day lives, and that these strategies changed with time and in relation to the child's condition. They also found that they required greater support during the first few months following diagnosis, however that once support services were in place, they felt confident in care for their child. The findings revealed that there are many unique aspects in caring for children with neurodegenerative genetic disorders that are different from other children with terminal illnesses. Implications for nursing and research are suggested.