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Parents' experience of living with and caring for an adult son or daughter with schizophrenia at home in Ireland: a qualitative study

Authors

  • R. McAuliffe MSc RPN RGN,

    Clinical Placement Coordinator, Corresponding author
    1. Practice Development Unit for Mental Health, HSE West, St Joseph's Hospital, Limerick, Ireland
    • Correspondence:

      R. McAuliffe

      Practice Development Unit for Mental Health

      HSE West

      St Joseph's Hospital

      Mulgrave Street

      Limerick

      Ireland

      E-mail: rose.mcauliffe@hse.ie

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  • L. O'Connor Msc RPN,

    Lecturer
    1. Department of Nursing and Midwifery, University of Limerick Medical School, Limerick, Ireland
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  • D. Meagher MD PhD MRCPsych

    Professor of Psychiatry, Consultant Psychiatrist
    1. University of Limerick Medical School, Limerick, Ireland
    2. Department of Adult Psychiatry, University Hospital Limerick, Limerick, Ireland
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Abstract

Accessible summary

  • This paper reports a study that explored the experience of now older parents living with and caring for, an adult child with schizophrenia in Ireland.
  • Parents reported mixed emotions that gave insight into the severe psychological distress they experienced when their son or daughter was diagnosed with schizophrenia. The period immediately after diagnosis can be particularly stressful. On the contrary; parents also experienced acceptance of their new caring role underpinned by their sense of love and responsibility for their son or daughter with schizophrenia.
  • There is a lack of studies on the experience and needs of parents of a son or daughter with schizophrenia in Ireland. This study offers insights from legitimate experts in illuminating what the experience is really like.
  • A family-centred approach is required to deal with the uniqueness of individual parents' circumstances. Assessment and care planning should take into account the family as a unit.

Abstract

This study explored the experience of parents living with, and caring for, an adult son or daughter with schizophrenia. There is increasing emphasis on the involvement of carers and users in the care for people with schizophrenia. ‘A Vision for Change’ highlights the need for a partnership approach and emphasizes that carers are an integral part in the planning and delivery of mental health services. In order to meet such requests, it was necessary to explore the meaning of caregiving for Irish families. A descriptive qualitative design was used to enable parents to describe their experiences. Semi-structured, in-depth interviews with a convenience sample of six parents in Ireland were carried out in 2007. The study encompassed four major themes: psychological tsunami, caring activities, coping with enduring illness and an uncertain pathway. Parents reported severe psychological distress when their son or daughter was diagnosed with schizophrenia. Their deep sense of loss was followed by acceptance of the situation. Feelings of love and a sense of responsibility helped to give meaning to their caring role. This study gave a voice to some parents of a son or daughter with schizophrenia. A family-centred approach should be at the core of care planning for this vulnerable population.

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