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'Developing Respiratory Nursing Practice to address Palliative Care needs of Patients with COPD: Exploring the lay Carer expert'

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Researcher: 
Professor Mary McCarron
Budget: 
€30,000
Funding source: 
Irish Hospice Foundation
Timeframe: 
Report published (2008)
Lead Researchers: Prof M McCarron (PI); A Stokes, G Hynes (doctoral student)
  • Title: Developing respiratory nursing practice to address palliative care needs of patients with chronic obstructive pulmonary disease (COPD): exploring the lay carer expert knowledge and experience
  • Background: Living with a protracted illness such as COPD over several years can result in a life that is dominated by the disease effects for the caregiver as well as the care recipient.  There has been little research to date that is specifically addressing the informal caregiver experience, knowledge and expertise in advanced COPD. 
  • Aim: The aim of this research project is to inform and develop respiratory nursing on palliative care for patients with advanced COPD and specifically in relation to lay or informal carers’ lay expert knowledge and experience.
  • Research Design: This study involved qualitative interviews with informal carers focusing on their experiences and perceptions of their role. A hermeneutic phenomenological approach was taken. The research question that informed the project was: how do informal carers of patients with COPD perceive their contribution to overall care and the idea of expert care? Patients attending a hospital for management of their COPD were invited to nominate their carers for invitation to participate.
  • Data Collection: Qualitative interviews were semi-structured. Following transcription, codes were identified and through thematic analysis collapsed into key themes. Specialist software was also used.
  • Data Analysis: Six broad themes were identified:
Impact of COPD on informal carer: then and now
Awareness of the disease & Constant State of Anxiety
Contact with Health Care Services
The Caring Role
Support
Carer perceptions of illness effects on the care recipient
  • Recommendations: The need to raise the profile of the carer in COPD; address the support needs of carers; re-examine the patient/carer/healthcare professional relationship; re-examine societal assumptions towards informal care and framing of economic burden of disease.

 

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