Ms Isabelle Schaefer1, Associate Professor Michelle DiGiacomo1, Associate Professor Nicole Heneka2, Dr Stacey Panozzo3, Professor Jane L Phillips1,4
1University Of Technology Sydney, Ultimo, Australia, 2University of Southern Queensland, Springfield, Australia, 3University of Melbourne, Melbourne, Australia, 4Queensland University of Technology, Brisbane, Australia
Biography:
Isabelle is a PhD student at the University of Technology Sydney, completing a thesis exploring the barriers and facilitators of person-centred care for people in NSW prisons.
Abstract:
Background:
Demand for prison-based palliative care is increasing, yet there is limited understanding of how the prison setting impacts person-centred palliative care (PCPC) in Australia. Recognising the factors affecting PCPC in prison is critical in addressing disparities in access.
Aims:
To explore prison and hospital clinicians’ perceptions of non-medical environment and professional context factors influencing PCPC for people in prison.
Methods:
Prison and hospital clinicians completed semi-structured interviews, analysed using template thematic analysis and organised using Mead and Bower’s model of person-centred care.
Results:
Participants (N=24) mostly female (n=16) nurses (n=8) working in the prison (n=18), with >10 years’ experience (n=10). Factors affecting PCPC included patient, provider, non-medical environment, point-of-care, system and shapers. Non-medical environment and professional context factors are reported here.
Relating to the non-medical environment, participants reported that prison palliative care patients spent most of their last year of life in maximum-security general population areas in multi-storey buildings, concrete bunkbeds and lock-ins of up to 18 hours/day. Access to modified-texture diets was limited, causing malnutrition and weight loss. Family contact was distressingly restricted, though videoconferencing improving PCPC. Regarding professional context, participants described profound coronial anxiety, and inadequate capacity to provide psychosocial support and culturally responsive care. However, developments including smoking ceremonies and extended family visits before death demonstrated introduction of innovative approaches to PCPC.
Families were often barred from care participation and had limited access to bereavement services for complex and disenfranchised grief. Difficulties sharing health information within and between prison and hospital could delay PCPC. Participants reflected that there were insufficient palliative care education opportunities tailored to the prison setting.
Conclusion:
These findings highlight the pressing need to ensure equality in access to high-quality palliative care for underserved populations, particularly those in prison, so that all individuals can experience compassionate PCPC at the end of life.