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Navigating uncharted territory: experiences of families when a child has a neurodegenerative life threatening illness Steele, Rose Guiller


Children with neurodegenerative, life-threatening illnesses account for a significant proportion of children requiring palliative care. Most of their care is provided at home by their families. Yet, there is a paucity of research that examines families' experiences when a child is dying at home. This grounded theory study generated a contextually-grounded description of families' experiences of living with a child who has a neurodegenerative, life-threatening illness, and how those experiences changed over time; the impact on families; and families' perceptions of factors that influenced their ability to care for their children. Data were collected from eight families through observations and audiotaped interviews. Families moved through a process of navigating uncharted territory as they lived with their dying child. This process occurred within the broader context of the acute, curative health care system and the sociocultural environment. The process was initiated by a precipitating event, such as one parent recognizing a deterioration in the child's motor skills. The emotions of fear, uncertainty, and grief gave impetus to the process. These emotions were very strong in the beginning. They gradually declined over time, but increased with subsequent precipitating events. Families lived much of their lives on plateaus of relative stability where they often felt alone and isolated from health care professionals. Inevitably, periods of instability originated in subsequent precipitating events in the process that led to families dropping off the plateau. Living with a dying child had a profound physical, emotional, and financial impact on families. The process of navigating uncharted territory was characterized by four dimensions - entering unfamiliar territory, shifting priorities, creating meaning, and holding the fort. Parents used strategies within these dimensions to manage the physical, cognitive, and emotional work arising from the situation. These dimensions and strategies were constrained and facilitated by four intervening conditions - relationships with health care providers, availability of information, gender differences, and communication between parents. The theory generated in this study contributes to an understanding of families' experiences as they live with a dying child. This theory provides a framework from which appropriate, family-centred interventions can be developed to facilitate optimal palliative care.

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