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Health-related quality of life in childhood disorders: a modified focus group technique to involve children

G M Ronen1, P Rosenbaum, M Law

  • 1Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada. roneng@mcmaster.ca

Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation
|August 18, 2001
PubMed

Insights

Modified focus groups effectively explore health-related quality of life (HRQL) in children with chronic conditions like epilepsy. This child-centered approach uncovers crucial HRQL elements beyond parental or clinician expectations.

Area of Science:

  • Child Health Research
  • Qualitative Methodology
  • Pediatric Psychology

Background:

  • Qualitative methods are underutilized in child health research due to a lack of specific instruments.
  • Exploring health-related quality of life (HRQL) in children with chronic conditions requires child-centered approaches.

Purpose of the Study:

  • To develop a child-centered qualitative research methodology for exploring HRQL issues.
  • To identify specific HRQL elements in pre-adolescent children with chronic medical conditions.

Main Methods:

  • Purposeful stratified sampling of children aged 6-12 with active epilepsy.
  • Utilized small, modified focus groups conducted in four phases with moderators.
  • Employed preset open-ended questions and activities to facilitate discussion.

Main Results:

  • The modified focus group process proved to be a powerful exploratory tool.
  • Elicited meaningful HRQL issues in children, often exceeding expectations of parents and health professionals.
  • Successfully identified key HRQL elements in childhood epilepsy.

Conclusions:

  • Modified focus groups are appropriate and suitable for exploring quality of life in pre-adolescent children with chronic conditions.
  • The methodology is feasible, trustworthy, and yields valuable insights.
  • Supports the use of qualitative methods in child health research for understanding patient experiences.
Abstract

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