Completed Studies

Caregiving parents of children with life-limiting illnesses: Beyond stress and coping to growth

Investigators & Staff: Susan Cadell, Rose Steele, Hal Siden, Betty Davies, Stephen Liben, David Hemsworth, Lynn Straatman, Laura Beaune, Robin Kramer, Lillian Rallison, Deborah DeVlaming, Kelli Stajduhar, Kathy Wilson-Forrest

When parents are caring for ill children, the stress is often compounded. Indeed, caring for a child with a life-limiting illness represents one of the most traumatic experiences a parent can endure. The primary aim of this research addresses the question “What are the factors that allow parent caregivers to survive and even grow in the face of the stressful circumstances of caring for a child with a life-limiting illness?”
This research will occur under the auspices of a CIHR-funded New Emerging Team (NET) grant entitled Transitions in pediatric palliative and end-of-life care.

Funding Agency

CIHR

Summary

The negative aspects of caregiving are well documented in the literature. In the face of such adversity, however, there are suggestions that caregivers can also experience personal growth and positive change.  Nevertheless, little is known about positive outcomes of caregiving, particularly of parents caring for seriously ill children.
The primary aim of this research addresses the question “What are the factors that allow parent caregivers to survive and even grow in the face of the stressful circumstances of caring for a child with a life-limiting illness?” The specific research objectives that will guide the research are as follows:
1. To test a structural equation model of factors that contribute to growth in parent caregivers of children with life-limiting illnesses, and
2. Through in-depth interviews with parent caregivers of children with life-limiting illnesses, to describe in detail the personal growth that parents experience and the factors that allow for it.

The outcome of this research will be a better understanding of whether personal growth occurs in this context and if so, the factors that contribute to it. This understanding will enable policy makers and practitioners alike to better understand the reality of caregivers and to enable intervention and support strategies to be designed. As care shifts from hospital to community, more family members become involved in caregiving. This research will contribute to knowledge in the fields of family caregiving, pediatric palliative care, and personal growth. In addition, it will provide an empirical and theoretical foundation for future longitudinal investigation of the process of coping with a child’s illness.

Methods
This study is comprised of two phases.  Phase One will use 8 short scales to study demographics, personal resources, spirituality, stress and growth of approximately 200 caregivers. Phase Two consists of in-depth interviews, conducted with up to 25 Phase One participants who have requested a follow-up interview.  Participants will be asked to dedicate approximately 1 to 1.5 hour(s) to fill out the questionnaires and approximately 1.5 to 2 hour(s) to complete the interview.

Mothers, fathers, and other caregivers (e.g. grandparents, guardians) of children with life-limiting conditions are invitied to participate and more than one parent caregiver per family may participate in the study.  Parents will be recruited regardless of the length of time they have been caregiving and at any stage in the child’s illness, so long as the child is under the age of 18. 

All recruitment materials request interested parents to call toll-free 1-800-810-0721 and leave a message.  At this point, the Research Coordinator at Wilfrid Laurier University will return their call.  When parents/guardians agree to participate, questionnaires will be mailed to them.  A stamped envelope will be included in the package in order to return the questionnaires.  There will also be an information sheet included in the package which explains the study.  Additionally, participants will be asked if they are willing to be contacted for a follow-up interview.

For more information please contact:
Kathy Wilson-Forrest, Project Coordinator
Centre for Healthy Living
Wilfrid Laurier University
Waterloo, ON
519-884-1970 ext 5261
.(JavaScript must be enabled to view this email address)

What we Learned

In Progress

What’s Next

In Progress

References

Cadell, S. (2001). Post-traumatic growth in HIV/AIDS caregivers in Quebec. Canadian Social Work, 3(1), 86-94.

Cadell, S. (2003). Trauma and growth in Canadian carers. AIDS Care, 15(5), 639-648

Cadell, S. & Haubrich, D.J. (2006).  Vivre intensément l’humain: Une exploration due deuil après le VIH-sida. Revue Reflets, 12, .

Cadell, S., Janzen, L., & Fletcher, M. (2004).  Parents finding meaning:  Examining the post-traumatic growth and the role of support with two bereavement programs. Research Presentation at the National Hospice Palliative Care Organization’s First Pediatric Palliative Care Conference. Dearborn: MI.

Cadell, S., Regehr, C. & Hemsworth, D. (2003). Factors contributing to post-traumatic growth: A proposed structural equation model. American Journal of Orthopsychiatry, 73(3), 279-87Cadell, S. & Sullivan, R. (in press). Posttraumatic growth in bereaved HIV caregivers: Where does it start and when does it end? Traumatology.

Cadell, S. & Sullivan, R. (2006). Posttraumatic growth in bereaved HIV caregivers: Where does it start and when does it end? Traumatology, 12, 45-59.

Davies, B., & Howell, D. (1998).  Special services for children.  In D. Doyle, G. Hanks, & N. Macdonald (Eds.) Oxford textbook of palliative medicine (2nd ed., 1077-1084).  Oxford, UK:  Oxford University Press.

Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science and Medicine, 45(8), 1207-1221.

Lehman, D.R., Davis, C.G., Delongis, A., Wortman, C.B., Bluck, S., Mandel, D.R. & Ellard, J.H. (1993). Positive and negative life changes following bereavement and their relations to adjustment. Journal of Social and Clinical Psychology, 12(1), 90-112.

Steele, R. (2002). Experiences of families in which a child has a prolonged terminal illness: modifying factors.  International Journal of Palliative Nursing, 8(9), 418.