Impact on parents when a child has a progressive, life-threatening illness

Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families' experiences. This grounded theory study generated a contextually-grounded description of the experiences of families living with a child who has an NLTI. Data were collected from eight families (n=29 family members) through observations and audiotaped interviews. The impact on parents was pervasive and multidimensional. Parents faced many emotional, physical, financial, and spiritual impacts on their lives. Parents often needed help to alleviate the impact of their experience, but it was not always available in a useful manner. Despite the negative aspects, caring for the child was never viewed by parents as a burden. Fatigue was a particularly prevalent symptom that held the potential to impact on parents in multiple ways. Suggestions for practice and research are offered to assist health care professionals in providing optimal pediatric palliative care to these families.