Research Article
Lessons Learned for Pediatric Pandemic Planning in Palliative Care: A Case Study
Laura Beaune1*, David Nicholas2 and Jodi Hocken31Palliative and Bereavement Services Research Coordinator, Palliative and Bereavement Care Service, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada
2Faculty of Social Work, Central and Northern Alberta Region, University of Calgary, #444, 11044 82nd Ave., Edmonton, Alberta, T6G 0T2, Canada
3Child and Family Therapist Women’s Crisis Services of Waterloo Region, 700 Heritage Drive, Kitchener, Ontario, N2H 6M3, Canada
- *Corresponding Author:
- Laura Beaune
Palliative and Bereavement Services Research Coordinator Palliative and Bereavement Care Service
The Hospital for Sick Children, 55, University Avenue
Toronto, Ontario, M5G 1X8, Canada
Tel: 416-813-7654
Fax: 416-813-7999
E-mail: laura.beaune@sickkids.ca
Received date March 22, 2012; Accepted date June 20, 2012; Published date June 23, 2012
Citation: Beaune L, Nicholas D, Hocken J (2012) Lessons Learned for Pediatric Pandemic Planning in Palliative Care: A Case Study. J Palliative Care Med 2:120. doi:10.4172/2165-7386.1000120
Copyright: © 2012 Beaune L, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Abstract
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.