Completed Studies

Exploring the Pyschosocial and Health Service Consequences of SARS on Children and their Families

Investigators and Staff: Dr. David Nicholas, PHD, RSW, Dr. Beverley Antle, PHD, RSW, Laura Beaune, M.S.W, RSW, Dr. Allan Coates, Donna Koller, Ph.D., Robin Gearing, M.S.W., R.S.W, Ph. D (Cand.), Dr. Larry Librach, Robyn Salter Goldie, MSW, RSW, Dr. Lori West

Children have been substantially affected by the recent SARS outbreaks in Canada despite representing a relatively small proportion of patients treated for Severe Acute Respiratory Syndrome (SARS). This study examines the experiences of 45 children (aged 6-19) with varying medical conditions who received inpatient and/or outpatient treatment during the period of strict infection control practices related to SARS, their parents and health care providers’. This study explores participants’ perspectives regarding the psychosocial and service delivery consequences of the Canadian SARS outbreak.

This research is sponsored by The Hospital for Sick Children and funded by the Canadian Institute for Health Research (CIHR)

Funding Agency:

This research is funded by the Canadian Institute for Health Research (CIHR)

Summary:

Recent pilot data collected prior to this study indicates that children with SARS, as well as those with other unrelated health conditions, have been significantly affected by the SARS outbreak and related infection control measures.  Pediatric patients and their parents were observed to experience heightened fear and worry about health risk, thereby increasing already existing vulnerabilities. Challenges of prolonged family separation, isolation, stigma, grief and loss, and family strain appear to be a substantial and protracted component of the pediatric experience of SARS, with possible unique impacts on both children and parents, made increasingly complex by developmental disparity among children and a predominant focus on SARS from an adult perspective. Thus while patients with suspected or probable SARS were arguably most directly affected by the outbreak, children with other unrelated health conditions appear also to be a population at psychosocial risk.

Clinical experience suggests that children with other health conditions and their families report a wide range of concerns, including: isolation; heightened anxiety regarding infection control for immune-compromised and seriously ill children; fear of accessing the hospital system; financial hardship; disruption and reduced access to services; compromised physical health; complicated grief reactions; and challenges related to stigma, social acceptance and community re-entry during the SARS outbreak.  Given that children who are ill are a vulnerable population with unique health care and developmental needs it is important to understand SARS-related experiences as it relates to pediatric care. 

This study comprises the first systematic examination of experiences, perceptions and outcomes from the perspective of Canadians who arguably were most affected by the pediatric incidence of SARS. Through the use of qualitative methods, the study examines: (1) experiential data from those involved in front line health care delivery, (2) challenges and barriers faced during the SARS outbreak, and (3) recommendations for increased effectiveness in the event of a future disease outbreak such as SARS. The study offers a comprehensive design that will illuminate pertinent issues for health care practice and potential contingency planning in an unexpected event such as that introduced by the recent SARS outbreak.  Accordingly, the study offers service delivery commentary for advancing best practice, and implications for pediatric health policy development.  And in so doing, it provides an invaluable health care consumer- and provider-based understanding of the Canadian pediatric psychosocial experience, with far-reaching implications for future emergency health crises.

What we Learned:

Research by members of this team revealed there were substantial emotional impacts on children being treated for SARS as well as those affected by the related infection control procedures (Koller et al. 2006a; 2006b).

What’s Next:
There is presently a study in progress building on the findings from this study and the original pilot study. This current study will examine the long term impacts of SARS on the experiences, concerns and perspectives of children and their parents who were directly affected by SARS.  The study will look into (1) post-traumatic type responses to the SARS outbreaks (2) key issues pertaining to the psychosocial needs of families, and (3) future recommendations for psychosocial and support intervention.

References:

Antle BJ. SARS (Severe Acute Respiratory Syndrome): OASW position related to the
provision of social work services. Ontario Association of Social Workers. April, 2003. Accessed May 13, 2003, 2003

Beck M, Antle BJ, Berlin D, et al. Wearing masks in a pediatric hospital: Developing
practical guidelines. Canadian Journal of Public Health. 2003 in review.

Gerberding JL. Faster…but Fast Enough? Responding to the Epidemic of Severe Acute Respiratory Syndrome. New England Journal of Medicine. Available at: http://www.nejm.org. Accessed May 13, 2003, 2003.

Koller, D., Nicholas, D., Salter-Goldie, R., Gearing, R., & Selkirk, E. (2006a). When Family Centered Care is Challenged by Infectious Disease: Pediatric Health Care Delivery During the SARS Outbreaks. Qualitative Health Research, 16, 47-60.

Koller, D. F., Nicholas, D. B., Salter-Goldie, R., Gearing, R., & Selkirk, E. K. (2006b). Bowlby and Robertson revisited: The impact of isolation on hospitalized children during SARS. Developmental and Behavioral Pediatrics. 27(1): 1-7.

Koller D, Nicholas D, Gearing R, Salter-Goldie R. Psychosocial Experiences Associated With SARS from the Perspectives Of Hospitalized Children, their Parents and Pediatric Health Care Providers:  Study in Progress. Toronto, Canada: The Hospital for Sick Children; July, 2003 study in progress.

Maunder R, Hunter J, Vincent L, et al. The immediate psychological and occupational impact of the 2003 SARS outbreak in a teaching hospital. Canadian Medical Association Journal. 2003;168(10):1-7.

McNeill T, Antle BJ. Talking to your children about SARS. Department of Social Work, The Hospital for Sick Children. Accessed August 10,2003, 2003.
Nicholas DB, Koller D. The Experience of SARS from a pediatric perspective. Update: Ontario Lung Association. in press;Accepted August 27, 2003.