Health and disability care providers' experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study.
- Resource Type
- Article
- Authors
- Belperio, Irene; Devery, Kim; Morgan, Deidre D; Rawlings, Deb; Raghavendra, Parimala; Walker, Ruth
- Source
- Palliative Medicine. Jan2023, Vol. 37 Issue 1, p131-139. 9p.
- Subject
- *TERMINAL care & psychology
*MEDICAL quality control
*INTIMACY (Psychology)
*SOCIAL support
*ATTITUDES of medical personnel
*RESEARCH methodology
*PLACE of death
*INTERVIEWING
*PATIENT-centered care
*QUALITATIVE research
*FAMILY roles
*ADVANCE directives (Medical care)
*CONTINUUM of care
*DESCRIPTIVE statistics
*RESEARCH funding
*PEOPLE with disabilities
*NEEDS assessment
*THEMATIC analysis
- Language
- ISSN
- 0269-2163
Background: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life. Aim: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability. Design: Qualitative study using reflexive thematic analysis. Setting/participants: Semi-structured interviews were conducted with nine health and disability care providers from two Australian states. Results: Five themes were constructed from the data: (1) The significance of place. All participants described how the end-of-life care experience was significantly impacted by the place in which dying occurred. (2) Knowing the person and their needs. Knowledge and familiarity with the individual with long-standing disability were seen as invaluable in terms of providing continued high-quality care. (3) Navigating a new care landscape. For disability support workers, struggling to adapt from providing disability support to end-of-life care was difficult. (4) Complexities of family involvement. Past experiences of families within the healthcare system had resultant impacts on care received by the individual with long-standing disability. (5) Being prepared. Participants felt more was needed in terms of end-of-life planning and discussions around end of life for this cohort. Conclusions: This research highlights a significant lack of continuity of care and problems at the intersection of the disability and health systems when providing end-of-life care for this cohort. Suggested areas for improvement include team approaches to enable continuity of care and dying in place, and a need for knowledge and skills in this area for all stakeholders. [ABSTRACT FROM AUTHOR]