The Parental Experience of Caring for a Child With Pain and Irritability of Unknown Origin

Sara Rizakos; Arpita Parmar; Harold Hal Siden; Julia Orkin

doi:10.1016/j.jpainsymman.2021.07.026

The Parental Experience of Caring for a Child With Pain and Irritability of Unknown Origin

J Pain Symptom Manage. 2022 Feb;63(2):330-340. doi: 10.1016/j.jpainsymman.2021.07.026. Epub 2021 Jul 31.

Authors

Sara Rizakos¹, Arpita Parmar², Harold Hal Siden³, Julia Orkin⁴

Affiliations

¹ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
² Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Schulich School of Medicine and Dentistry, Western University, London ON, Canada.
³ Department of Pediatrics, University of British Columbia, BC, Canada; Child and Family Research Institute, BC Children's Hospital, Vancouver, BC, Canada; Canuck Place Children's Hospice, Vancouver, BC, Canada.
⁴ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Department of Pediatrics, University of Toronto, Toronto, Canada; Division of Pediatric Medicine, Complex Care Program, The Hospital for Sick Children, Toronto, Canada. Electronic address: julia.orkin@sickkids.ca.

PMID: 34343622
DOI: 10.1016/j.jpainsymman.2021.07.026

Abstract

Background and objective: Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO.

Methods: We conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by 2 independent reviewers using thematic analysis.

Results: 15 parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed 3 major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child's experience is inherently linked to the parental experience.

Conclusion: Parental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents.

Keywords: Irritability; Pain; Pediatrics; Qualitative inquiry; Severe neurological impairment.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Caregivers / psychology
Child
Female
Humans
Mothers / psychology
Pain
Parents* / psychology
Qualitative Research
Quality of Life*