Soins palliatifs et médecine

Abstrait

Lessons Learned for Pediatric Pandemic Planning in Palliative Care: A Case Study

Laura Beaune*, David Nicholas and Jodi Hocken

Aim: This study describes the experiences of parents of hospitalized dying children during the SARS (severe acute respiratory syndrome) outbreak in southern Ontario, Canada in 2003. Recommendations are generated for future pandemic planning related to paediatric palliative care.
Methods: A purposive sample of six case studies comprised parents of children who received inpatient care for a non-SARS related life threatening illness during the SARS outbreak. Parents participated in face-to-face, semistructured interviews which took place 6 months to 1 year after their child had died. Interviews focused on parental experiences of services received during the SARS outbreak, including considerations for infection control and restricted visitation practices.
Results: The data illuminated three main themes: the impact of communication barriers and limited information; repercussions of visitation restrictions; and the importance of maintaining a high quality of care despite infection control challenges. Parents identified their coping strategies, and recommend enhanced and nuanced care for dying children and their families during health crises. Negative impacts of pandemic control strategies included isolation due to infection control, whereas recommendations promote the enhancement of family-centered pediatric palliative care.
Conclusions: Understanding parental experience can contribute to the overall development of recommendations for future pandemic planning, with respect to the unique needs of dying children and their families. Specific recommendations such as flexible family access policies and the creative use of social media technologies are recommended as health care facilities embark on pandemic preparation plans. Given the significant lack of pandemic planning in pediatric palliative care, these findings are an important first step in developing a framework that supports children with alife threatening illness during a public health crisis.