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Children's perspectives of a pediatric hospice program
Betty Davies1, John B Collins, Rose Steele
1Department of Family Health Care Nursing, University of California San Francisco, USA.
Journal of Palliative Care
|February 18, 2006
Summary
Children in pediatric palliative care and their siblings reported high satisfaction with hospice programs, particularly valuing engaging activities and a supportive social environment. Key improvements for adolescents include age-appropriate resources and outings.
Area of Science:
- Pediatric Palliative Care
- Child Psychology
- Hospice Care Evaluation
Background:
- Limited research exists on the experiences of children, including siblings, within pediatric palliative care settings.
- Understanding patient and family perspectives is crucial for optimizing hospice services.
Purpose of the Study:
- To evaluate the experiences of ill children and their siblings in a Canadian pediatric hospice program.
- To identify factors contributing to satisfaction and areas for improvement in pediatric palliative care.
Main Methods:
- A mixed-methods approach was used, combining mail-out questionnaires with face-to-face interviews.
- Data were collected from 26 ill children and 41 siblings via questionnaires, and from 4 children and 10 siblings via interviews.
Main Results:
- Overwhelmingly positive feedback was received regarding program activities and the physical hospice environment.
- Children's satisfaction was significantly influenced by engaging activities, amenities, and the supportive social climate created by staff, volunteers, and other families.
- Adolescents suggested a need for more age-appropriate activities, external trips, and attentive staff.
Conclusions:
- The social climate, characterized by care, safety, friendliness, acceptance, and variety, is paramount to the success of pediatric palliative care programs.
- Hospice programs can enhance adolescent experiences through tailored activities and increased engagement opportunities.
- The findings underscore the importance of a holistic approach to pediatric palliative care, addressing the needs of both ill children and their siblings.