The experiences of children diagnosed with a life-threatening or life-limiting illness

Ciobanu, Estera and Preston, Nancy and Grinyer, Anne and Limmer, Mark (2019) The experiences of children diagnosed with a life-threatening or life-limiting illness. PhD thesis, Lancaster University.

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Abstract

Title: The experiences of children diagnosed with a life-threatening or life-limiting illness Background: Exploring children’s experiences when diagnosed with a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. Although a number of studies have been conducted to explore the experiences of children diagnosed with serious illnesses, there are limited studies which explored the experiences of both children and parents who were from the same cohort in a palliative care setting. The study was conducted in Romania, which is situated in the Southeastern Europe, where paediatric palliative care is in its infancy. Aim: To advance the understanding of the experiences of children diagnosed with life-threatening or life-limiting conditions through both their first-hand accounts and those of their parents in a palliative care setting. Method: A qualitative study was conducted with ten children diagnosed with life-threatening or life-limiting illnesses using in-depth interviews. Interviews were also held with the parents who were the main carer for the child to give an additional perspective of the experiences of their children regarding their illness. The interview data were analysed using thematic analysis. Findings: The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. There is a gap in the child’s experience and understanding compared to what their parents believe they know. Awareness contexts and developmental theory were used as frameworks to discuss the experiences of children diagnosed with a life-threatening or life-limiting illness from both their perspective and that of their parents. Results suggest that awareness contexts are not fixed and children can at times move back and forth from one context to another. Results also indicate that children are able to understand and describe their experiences related to their illness depending on their developmental stage as well as personal experiences. Conclusion: This study makes a unique contribution to knowledge as it is the first study to present the perspectives of both parents and children diagnosed with life-threatening and life-limiting conditions in receipt of palliative care.