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Trajectory of certain death at an unknown time: children with neurodegenerative life-threatening illnesses
1School of Nursing, York University, Toronto, Ontario, Canada. rose.steele@sympatico.ca
Insights
Families caring for children with neurodegenerative life-threatening illnesses at home navigate unpredictable illness trajectories. They experience isolation during stable periods and face challenges during inevitable declines toward the child's death.
Area of Science:
- Palliative Care
- Pediatric Oncology
- Family Studies
Background:
- Neurodegenerative life-threatening illnesses (NLTIs) represent a significant burden for children requiring palliative care.
- Most pediatric palliative care occurs at home, predominantly managed by families over extended periods.
- There is limited research on the experiences of families caring for a dying child with an NLTI at home.
Purpose of the Study:
- To explore the lived experiences of families navigating the dying process of a child with an NLTI at home.
- To understand the challenges and support needs of these families.
Main Methods:
- Grounded theory approach utilized.
- Data collected through observations and audiotaped interviews with 8 families.
- Analysis focused on identifying recurring themes and processes.
Main Results:
- Families described navigating 'uncharted territory' with a dying child.
- Illness trajectories were not linear, characterized by plateaus of stability and periods of acute instability.
- Families reported feelings of isolation from healthcare professionals during stable phases.
Conclusions:
- The study highlights the complex, non-linear nature of pediatric palliative care at home for children with NLTIs.
- Findings underscore the need for improved support systems and communication for families during both stable and unstable phases of illness.
- Implications for clinical practice and future research are discussed to better assist families in this challenging journey.
Abstract:
Childred with neurodegenerative life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care. Most of their care is provided at home by their families over many years, yet there is a paucity of research examining families' experiences with a child with an NLTI is dying at home. In this grounded theory study, data were collected from 8 families through observations and audiotaped interviews. Families moved through a process of navigating uncharted territory as they lived with their dying child. The illness trajectory of cetain death at an unknown time was not a steady decline. Instead, families lived much of their lives on plateaus of relative stability where they often felt alone and isolated from health-care professionals. Inevitable, periods of instability originated in subsequent precipitating events in the process that led to families dropping off the plateau on the way to the child's inevitable death. Implications for research and practice are discussed.
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