Stress and Growth over Time: Caregiving and Bereaved Parents of Children With Life-Limiting Illnesses
Dr Susan Cadell, MSW, PhD (PI)
Caring for a child with a life-limiting illness is stressful, and the death of a child due to such an illness can be traumatic. The negative aspects of caregiving are well documented in the literature. However, it has also been suggested that in the face of such adversity, parents can experience personal growth and positive change. Little is known about positive outcomes of caregiving, particularly for parents caring for seriously ill children.
In our previous study, Caregiving Parents of Children with Life-Limiting Illnesses, we developed and tested a model that helped us understand the factors that contribute to personal growth and stress in caregivers of these children; the purpose of this step is to further develop this model. This extended study allows us to learn more from the parents caring for very sick children as they share their changing experiences over time and also from a second group of parents: those who are bereaved. Thus, we are investigating the differences in the stress, personal resources, and growth between both parent caregivers and bereaved parents. This is a unique opportunity to study the positive and negative aspects of caregiving and bereavement over time.
Pathways leading to positive outcomes are being identified and will then be used to optimize the emotional, social, and spiritual care available to patients and families receiving pediatric palliative services, including bereavement care.
The primary aim of this research is to address the following 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 is comprised of two phases:
Phase One uses 8 short scales to study demographics, personal resources, spirituality, stress and growth and is being sent to the participant twice, one year apart. A stamped return envelope is provided along with an information sheet that explains the study in detail.
Phase Two consists of in-depth interviews, conducted with a select number of Phase One participants. There is no obligation to participate in the interview phase and parents are able to opt out of the study at anytime without consequence. It takes approximately 1 to 1.5 hour(s) for parents 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 a child who is living with or has died from a life-limiting illness were invited to participate. All parents and other caregivers were eligible to participate regardless of the length of time they had been caregiving and at any stage after the child’s death, so long as the child was under the age of 18. More than one parent caregiver per family could participate in the study and both mothers and fathers were strongly encouraged to share their experiences.
- Caregiving for a child with an illness can be highly stressful and traumatic and negative outcomes of such experiences have been well documented.
- Growth does occur in our parents who are caring for a child with a life-limiting illness.
- Our research suggest that:
- Personal resources such as meaning, optimism, and self-esteem are correlated with growth.
- Parent caregivers who report more spirituality demonstrate more personal growth.
- Parent caregivers who report higher levels of stress measured by burden and depression demonstrate more personal growth.
- The high response rate and successful recruitment, as well as the request for participation by bereaved families show that there is a strong willingness of families in pediatric palliative care to participate in research.