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A investigation into hope, self-efficacy, distress and uncertainty in parents who have a child with a life-threatening or life-limiting illness

      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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