Project 171248

Caring for a child with a life-limiting illness is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with a life-limiting illness are well documented. In the face of such adversity, however, we also know that parent caregivers can experience positive changes caring for children with even the most serious conditions. In a previous study, Caregiving Parents of Children with Life-Limiting Illnesses, we developed and tested a model that helps us understand the factors that contribute to personal growth and stress in caregivers of these children; the purpose of the proposed study is to further develop this model. This extended study will allow us to learn more from the parents caring for very sick children as they share their changing experiences over time and also from a second group of parents: those who are bereaved. As a result, we will be able to investigate the differences in the stress, personal resources, and growth between both parent caregivers and bereaved parents. This is a unique opportunity to study the positive and negative aspects of caregiving and bereavement over time. New knowledge obtained from this study will be of tremendous value to parents, practitioners and policy makers concerned with childhood life-limiting illness. Pathways leading to positive outcomes will be identified through this study and will then be used to optimize the emotional, social, and spiritual care available to patients and families receiving paediatric palliative services, including bereavement care.

longitudinal study of stress and growth in caregiving and bereaved parents of children with life-limiting illnesses, extending a previous model