The experience of families and healthcare professionals supporting people with prolonged disorders of consciousness.

Sonja Soeterik

Research output: ThesisDoctoral Thesis

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For some people after a severe brain injury, states of changed awareness and consciousness can occur. Although relatively rare, when these states persist they are known as prolonged disorders of consciousness (PDoC). Research is limited on understanding the factors that make PDoC so psychologically distressing for the wider family and how best to support families. Little is known about the experiences of healthcare professionals who work with this unique clinical population. The current thesis sought to understand the experience of supporting people with PDoC in order to design an intervention to improve the psychological wellbeing of families and professional caregivers.

Chapters Two and Five, used qualitative methodologies to understand the experience from the perspective of families and healthcare professionals. Chapter Two employed an Interpretative Phenonmenological Analysis methodology (n = 9) and led to an understanding of the possible factors that contribute to distress in families and proposed a model for the perpetuation of the complex loss they experience. Chapter Five used thematic analysis of three focus groups (n = 21) of healthcare professionals skilled in working with people with PDoC. Professionals were noted to experience difficulties balancing competing demands and conceptualizing family distress. A reciprocal interaction was observed between family distress impacting on professional distress and therefore professionals’ distress impacting further on family distress.

In Chapters Three and Six employed quantitative methods and online cross-sectional research designs. Chapter Three described difficulties found in recruiting families of people with PDoC (n = 8) using an on-line methodology and proposed a theoretical model for understanding family distress. Chapter Six showed that working with people with PDoC and their families, was associated with elevated levels of burnout and a lack of compassion satisfaction for healthcare professionals (n = 91).

Chapters Four and Seven, tested the proof of concept as part of the development of interventions designed based on the formative research findings from the earlier studies in this thesis. The family intervention was found to be acceptable to a panel of professionals and a lived experience expert in the area (n = 8) and the pilot families (n = 2) themselves. Healthcare professionals (n = 60) in Chapter Seven, reported gaining more confidence in working with distressed families following a psycho-educational training session.

Finally, Chapters Eight and Nine present the contribution of this research to the understandings of families and healthcare professionals supporting people with PDoC and reflections on future research design with this population
Original languageEnglish
Awarding Institution
  • Royal Holloway, University of London
  • Riazi, Afsane, Supervisor
  • Connolly, Sarah, Supervisor, External person
  • Evangeli, Michael, Advisor
Thesis sponsors
Award date1 May 2018
Publication statusPublished - 2017


  • Prolonged Disorders of Consciousness
  • Vegetative State
  • Minimally Conscious State
  • Healthcare Professionals
  • Family
  • Caregivers

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