Highlights
- •Parents of children with a LLI/LTI had high levels of hope and self-efficacy.
- •The highest prevalence of hope was amongst parents who could stay at home with their children.
- •Higher self-efficacy was associated with parents who did not have financial concerns.
- •Increased uncertainty was found amongst the parents who did not have other children living in the home.
- •Increased distress was associated with financial concerns.
Abstract
Purpose
To examine the experiences of parents who are caring for a child with a life-threatening
or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope,
and self-efficacy to determine if there are significant variations with respect to
demographic characteristics.
Design and methods
Data for this analysis are derived from a quasi-experimental evaluation of a support
intervention with a purposeful sample of parental caregivers from a western Canadian
province. Participants completed a demographic survey and four quantitative measures
at baseline and following use of the support intervention.
Results
Many parents had high scores of hope and self-efficacy, with highest levels of hope
amongst parents who could stay at home with their children, and higher self-efficacy
expressed by parents without financial concerns. Increased levels of uncertainty and
distress were found amongst parents without other children living in the home, and
those with financial concerns, respectively.
Conclusions
This exploratory analysis found that many parents experienced clinically significant
distress along with uncertainty. The results determined that caring for children in
the home other than the ill child significantly decreased uncertainty. High levels
of parental hope and self-efficacy were frequently identified, with variations reflecting
differences in social roles and stressors. The results contribute to an increased
understanding of the value of support resources including parental leave and financial
support.
Practice implications
Pediatric nurses may consider adopting an approach to caring for families with children
in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy
while ensuring access to support resources.
Keywords
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Article info
Publication history
Published online: July 14, 2022
Accepted:
July 2,
2022
Received in revised form:
June 14,
2022
Received:
January 21,
2022
Identification
Copyright
© 2022 Elsevier Inc. All rights reserved.
