Experiences of families in which a child has a prolonged terminal illness: modifying factors

Area of Science:

• Pediatric Palliative Care
• Neurodegenerative Life-Threatening Illnesses (NLTI)
• Family Caregiving

Background:

• Many children needing palliative care have neurodegenerative life-threatening illnesses (NLTI).
• Most NLTI child care occurs at home, managed by families over extended periods.
• Limited research exists on family experiences during a child's end-of-life phase at home.

Purpose of the Study:

• To explore and understand the experiences of families caring for a child with an NLTI who is dying at home.
• To identify the process and strategies families employ during this challenging period.

Main Methods:

• Grounded theory methodology was employed.
• Data were gathered through observations and audiotaped interviews with eight families.
• Analysis focused on understanding the lived experiences of family caregivers.

Main Results:

• Families described their experience as 'navigating uncharted territory'.
• Four key conditions influenced family strategies: healthcare provider relationships, information availability, gender dynamics, and parent-child communication.
• These conditions could either facilitate or restrict the coping strategies families utilized.

Conclusions:

• Families caring for a dying child with an NLTI at home face unique challenges.
• Understanding the influencing factors is crucial for developing effective support.
• Implications exist for improving research, education, and practice in pediatric palliative home care.