Impact on parents when a child has a progressive, life-threatening illness
Date: 2006
Author(s): Steele, R. & Davies, B.
Journal: International Journal of Palliative Nursing, 12(11), 526-535
Children with neurodegenerative, life-threatening illnesses (NLTI’s) account for a significant proportion of children requiring palliative care, yet there is a lack 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 a NLTI. Data were collected from eight families (n=29 family members) though observations and audio-taped interviews. The impact on parents was pervasive 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 impacts, 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.
