Director, Manulife Centre for Health Living Wilfrid Laurier University
Caregiving Parents of Children with Life-Limiting Illnesses: Beyond Stress and Coping to Growth


Who we are
 

The research team is made up of seven individuals and four affiliated institutions: University of British Columbia, York University, University of California San Francisco, Wilfrid Laurier University.

Principal Investigator
Dr. Susan Cadell, social work professor, Director of the Manulife Centre for Healthy Living,  Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University (Kitchener-Waterloo, Ontario)

Co-Investigators
Dr. Betty Davies, nursing professor, University of Victoria (BC), University of California (San Francisco)
Dr. Rose Steele, nursing professor, York University (Toronto)
Dr. Hal Siden, physician, Medical Director, Canuck Place Children’s Hospice, professor of pediatrics, University of British Columbia (Vancouver)
Dr. Lynn Straatman, physician, Canuck Place Children’s Hospice (Vancouver)
Dr Stephen Liben, physician, professor of pediatrics, McGill University (Montréal)
Dr. David Hemsworth, professor of business, SEM specialist (Nipissing University (North Bay, Ontario)

Data collection sites
Children’s &Women's Health Centre of British Columbia
Alberta Children’s Hospital, Alberta
The Hospital for Sick Children, Ontario
The Montreal Children’s Hospital, Quebec
Stollery Children’s Hospital, Alberta
UCSF Benioff Children’s Hospital, California

Other contributing organizations
Muscular Dystrophy Canada – Western Office
International Spinal Muscular Atrophy Patient Registry
 


What we set out to do
 

As pediatric palliative care professionals we acknowledged that caring for an ill child can be highly stressful and perhaps even traumatic for parents. We also recognized that very little is known about the positive aspects of caregiving, such as personal growth. Personal growth pertains to the positive changes that people experience as a result of adverse circumstances. So, we asked 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?
 

Specifically, we had three hypotheses
1. Caregivers who report more personal resources will demonstrate more growth.
2. Caregivers who report more spirituality will have more growth.
3. Caregivers who demonstrate higher levels of stressors will have more growth.
 


What we did
 

Parents who were caring for a child with a life-limiting illness were recruited through participating organizations. Participants filled out a questionnaire, which looked at stress (depression, burden), meaning in caregiving, spirituality, personal resources (optimism, self-esteem) and growth (Posttraumatic Growth Inventory).

We used an analysis technique called structural equation modeling (SEM), for which it is recommended to have at least 200 participants. A total of 272 caregivers answered the questionnaire: 223 women and 49 men. Since more than one caregiver per household could participate, some were caring for the same child. The average age was 42 years and 80% were married.
 


What we’ve learned so far
 

Of those that returned the questionnaires, 94% indicated they were willing to be contacted for future research. This was a strong message to us and the Canadian Institutes for Health Research (CIHR) about the importance of this study.

We are still analyzing the data, conducting interviews and working on the SEM, but we wanted to share some of the highlights of our results to date. Please remember, these are overall results about trends in the data and not necessarily reflective of individual scores or of individual people. The full results of our study will be distributed at a later date.

Personal growth
Overall, participants indicated they experienced growth, as measured by the Posttraumatic Growth Inventory. Some other findings:

•    As meaning in caregiving goes up, growth scores go up.
•    As self esteem goes up, growth scores go up.
•    As spirituality goes up, growth scores go up.
•    As self-esteem goes up, meaning in caregiving goes up.
•    As optimism goes up, meaning in caregiving goes up.
•    As spirituality goes up, meaning in caregiving goes up.
•    As spirituality goes up, self-esteem goes up.
•    As spirituality goes up, optimism goes up.
•    As depression goes up, caregiver burden goes up.
•    As depression goes up, meaning in caregiving goes down.
•    As depression goes up, spirituality goes down.
•    As burden goes up, self-esteem goes down.
•    As burden goes up, optimism goes down.

It is important to note that the relationships above do not necessarily mean that one thing has caused the other. Other scores did not have correlations to one another. No relationship was found between growth and depression, optimism and burden scores.
 


Where we go from here
 

This project has caused us to think about other questions. Because very little research has examined couples who care for an ill child together, we decided to do an additional project with the couples. Twenty-five couples did a second survey and twelve were interviewed together. We received a grant from the SickKids Foundation in Toronto, Ontario to support this project.

In 2009 our team received funding from CIHR to do an additional three years of research in this area. We are following up with those who agreed to be contacted for future research and to do the survey two more times over the next three years. Because some participants let us know their child had died, we decided to create a new group, made up of bereaved parents, who will be invited to answer the questionnaire. We will also conduct more qualitative interviews.

We thought you’d also like to know
A significant number of students were trained in research through this project. Two students did their Master in Social Work (MSW) theses at Wilfrid Laurier University (WLU):
Ouellet, M. (2009). Mothers' Experiences of Care Provided to their Child with a Life-Limiting Illness.
Kennedy, K. (2009). Personal Growth in Couples Caring for a Child with a Life-Threatening Illness.

Nine Master’s students in Social Work at WLU worked on this project, along with two PhD students: one at McGill University (Montréal), one at University of California San Francisco.

One Master’s student in Nursing at York University worked with us to examine differences between the men’s and the women’s responses to the questionnaire. The article has appeared: Schneider, M., Steele, R., Cadell, S. & Hemsworth, D. (2010). Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses.  Journal of Pediatric Nursing.

To learn more
Call 1-800-810-0721 to leave a message for our Project Co-ordinator, or email scadell@wlu.ca, or visit www.pallpedsnet.ca.

Thanks to our Partners
Wilfrid Laurier University
University of California San Francisco
University of British Columbia
York University
University of Victoria
Canadian Institutes of Health Research