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2 results

  • 16 - Capturing the Voice of Parents and Children

  • from Part Three - Impact, Intervention and Equity
  • Edited by James Law, University of Newcastle upon Tyne, Sheena Reilly, Griffith University, Queensland, Cristina McKean, University of Newcastle upon Tyne
  • Book:
    Language Development
    Published online:
    11 August 2022
    Print publication:
    25 August 2022, pp 376-396

  • Summary

    Research agendas in health and education are largely driven by professionals, resulting in a bias against the concerns of the participants in or receivers of the research. There is growing evidence of the positive influence of public and patient involvement (PPI) in research and within the field of language development and disorders, and there is increasing involvement of parents and children in research design and implementation. In this chapter, we discuss the importance of involving parents and children with language disorders in research and the facilitators and barriers to their involvement. The views of parents and children can redress bias in our research and provide balance to our evidence base. We argue that the voices of parents and children can inform our understanding of the social dimension of language development and disorder and shape the development of outcome measures that are valued and meaningful to children and their families. We also reflect on the contradictions in the professional discourse that reflect attitudes towards parents and children. We end with a consideration of how listening to parents and children might inform the study of language development and language disorder in large cohort studies and in the development and evaluation of interventions.

  • End-of-life decision making in critical illness: Perspectives of Asian parents

  • Kristy Xinghan Fu, Yee Keow Chiong, Nicola Ngiam
  • Journal:
    Palliative & Supportive Care / Volume 20 / Issue 2 / April 2022
    Published online by Cambridge University Press:
    04 May 2021, pp. 233-242
  • Objective

    To explore parents’ perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population.

    Method

    A prospective questionnaire cohort study conducted in a university-based tertiary care hospital. 30 parents of children who had been admitted to general pediatric wards for acute ailments and/or were being followed up in general pediatric outpatient clinics after inpatient admissions or emergency department visits completed 30 interviewer-administered questionnaires. With the first 10 completed questionnaires, we sought feedback on the design of the four case vignettes and related questions. Responses to specific questions related to each case vignette were rated on a Likert scale.

    Results

    The majority of parents were able to comprehend and identify with the issues in the case vignettes, which allowed them to respond appropriately. Parents tended to avoid active withdrawal or withholding of life-sustaining treatment. The top three priorities for parents making EOL decisions for their children were: the chance of improvement, the presence of pain or discomfort, and information provided by healthcare staff. Parents reported that they would prefer to know immediately if their child is at risk of dying; they also preferred to get as much information as possible from the healthcare team and thought that meeting with the healthcare team before making EOL decisions was pivotal.

    Significance of results

    Parents place highest priorities on their child's likelihood of improvement, perception of their child's pain, and information provided by healthcare professionals in making EOL decisions.