Get access

Respect for autonomy in the healthcare context: observations from a qualitative study of young adults with cerebral palsy

Authors

  • E. Racine,

    Corresponding author
    1. Department of Medicine and Department of Social and Preventive Medicine, Université de Montréal, Montréal, QC, Canada
    2. Departments of Neurology and Neurosurgery, Medicine & Biomedical Ethics Unit, McGill University, Montréal, QC, Canada
    • Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), Montréal, QC, Canada
    Search for more papers by this author
  • D. Larivière-Bastien,

    1. Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), Montréal, QC, Canada
    Search for more papers by this author
  • E. Bell,

    1. Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), Montréal, QC, Canada
    Search for more papers by this author
  • A. Majnemer,

    1. School of Physical & Occupational Therapy, Montreal Children's Hospital, McGill University Health Centre, Montreal, QC, Canada
    Search for more papers by this author
  • M. Shevell

    1. Department of Pediatrics, Montreal Children's Hospital, McGill University Health Centre, Montreal, QC, Canada
    2. Department of Neurology/Neurosurgery, Montreal Children's Hospital, McGill University Health Centre, Montreal, QC, Canada
    Search for more papers by this author

Correspondence:

Eric Racine, PhD, Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), 110 Avenue des Pins Ouest, Montréal, QC, Canada H2W lR7

E-mail: eric.racine@ircm.qc.ca

Abstract

Background

Respect for patient autonomy is a cornerstone of contemporary medical ethics and clinical practice. In its different shapes and forms (e.g. being informed, being engaged in discussions and decisions about medical care and being supported in developing healthcare preferences and choices), patient autonomy has been fostered by both paediatric and adult professional societies. The transition from paediatric to adult care creates a complex situation where autonomy for medical decisions shifts to the developing adolescent. More specific challenges to respect for autonomy may be experienced by young adults with cerebral palsy in the transition period where, for example, language and motor impairments may affect communication skills and this may be conflated with cognitive disability.

Aim

To characterize perspectives towards autonomy in the healthcare context for young adults with cerebral palsy.

Method

We carried out semi-structured interviews with 14 young adults (aged 18–25) with cerebral palsy. The audiotaped interviews were transcribed verbatim and analysed using a conventional thematic qualitative content analysis.

Results

Participants displayed a range of attitudes towards autonomy, suggesting that the value of autonomy is considered in light of competing values and of context. Testimonials from participants demonstrated that both contextual (e.g. ill-adapted health care, lack of specialized public transport) and relational (e.g. attitudes towards parental involvement in decision making) factors negatively or positively impact autonomy.

Conclusion

We observed that there were four key elements interwoven in participants' characterization of autonomy: the coupling of decisional and physical autonomy, the influences of family and society on autonomy, the influence of healthcare professionals on autonomy and the need for preparation for autonomy.

Ancillary