Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses.

Jill M. G. Bally,Roona Sinha,Meridith Burles,Shelley Spurr,Marcelline Zimmer,Heather Hodgson-Viden,Lorraine Holtslander

doi:10.3390/children8030218

Jill M. G. Bally, Roona Sinha + Show 5 more

Open Access

https://doi.org/10.3390/children8030218

Copy DOI

Abstract

Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s care and support needs. Methods: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. Fifty-nine participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility. Results: Significant influence on parental distress was found, and the qualitative findings reveal benefits of the intervention for parental wellbeing. The intervention effectively offered practical and emotional support to diverse family caregivers. Conclusions: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. In doing so, parents’ critical caregiving activities can be sustained and their child’s health and wellbeing optimized.

Highlights

Many infants, children, and adolescents are diagnosed with illnesses that impose limitations on their well-being and life course trajectories
A total of 58 participants completed the measures of their Herth Hope Index (HHI) [23], General Self Efficacy Scale (GSES) [24], K6 [25], Perception of Uncertainty Scale (PPUS) [26]
Of those included in the quantitative study, 29 family caregivers participated in the qualitative face-to-face, audio-taped, open-ended evaluation interviews and three participants responded in email format, for a total of 32 respondents (n = 32)

Summary

Introduction

Many infants, children, and adolescents are diagnosed with illnesses that impose limitations on their well-being and life course trajectories. In Saskatchewan, Canada where the research was conducted, over 200 children with complex treatment needs receive diagnoses of life limiting and life threatening illnesses (LLIs, LTIs), and specialized pediatric palliative care each year As medical research advances treatment and health care, many young people live with life-limiting (LLI) and life-threatening illness (LTI) [2]. Children’s care and support can become the central focus of the family’s life, with daily activities revolving around management of symptoms and/or illness-imposed limitations along with basic physical, emotional, and social needs [2,3]. Conclusions: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. Parents’ critical caregiving activities can be sustained and their child’s health and wellbeing optimized

Methods

Results

Discussion

Conclusion