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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.
Insights
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.
Abstract:
Little attention has been paid to documenting the experiences of children in pediatric palliative care programs, both those who are ill and their siblings. In this evaluation study of Canuck Place, a Canadian, free-standing hospice program, 26 ill children and 41 of their siblings completed mail-out questionnaires. In addition, four ill children and 10 siblings participated in face-to-face interviews. Results indicate that nearly all children were enthusiastic about the program's activities and the physical environment at Canuck Place. Engaging activities, physical amenities, and the social climate promoted by staff, volunteers, and other families were important contributors to the children's satisfaction. Suggestions for better serving adolescents included: a wider range of age-appropriate activities, games, and toys--especially for teens and older children; more trips and tours outside the building and around town; and caring staff and volunteers who are "attentive-in-the-moment". From the children's perspective, the key to Canuck Place's success is its social climate of caring, safety, friendliness, acceptance, and variety.
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