A national survey of occupational therapists working with people living with terminal illness : profile, role, context, professional reasoning and challenges

Abstract

Each year in Australia, over 70 000 people require services and support due to terminal illness. Occupational therapists are part of the multi-disciplinary healthcare team who treat people with a terminal illness in Australia. However, despite occupational therapists playing a central role in this area, research suggests that therapists are challenged in their professional reasoning when adopting a palliative approach, and that they feel unprepared to work with clients who are terminally ill due to the paucity of empirical evidence in this clinical area. This results in therapists identifying that they are unclear on the scope of their role, and what this looks like in various practice contexts. Therefore the purpose of this study was to gain an in-depth understanding of the scope of the occupational therapy role, the professional reasoning that underpins this role, and the context of Australian occupational therapy practice when working with people living with a terminal illness. In addition, educational preparation for this role, along with the challenges and supervision and support needs while undertaking the role, were examined. A national online mixed-methods survey, of Australian-based occupational therapists working with people with a terminal illness was completed. This study had an extensive qualitative component, and employed the Ecological Model of Professional Reasoning as its theoretical framework to identify the therapist, client and contextual factors related to working with this client group. This model underpinned all aspects of the study, including the design of the survey. Purposive, snowball sampling techniques led to 171 occupational therapists completing the survey, representing the largest national survey in this clinical area to date. Descriptive data was analysed using SPSS, and qualitative analysis of the findings was completed using grounded theory methods, with the data managed in NVivo. The survey has provided detailed demographics of a large sample of Australian-based therapists' work profiles, work settings and client groups served. It has shown that therapists work with these clients, who primarily had oncological diagnoses, across a variety of settings and caseloads, and that people with terminal illnesses are not seen solely within palliative care services. An understanding of clients' occupational engagement at the end of life was a key feature underpinning therapists' professional reasoning. Therapists shared their perspectives on occupational engagement for people living with a terminal illness. They acknowledged the occupations that were unique and meaningful at the end-of-life, namely occupations that focussed on remaining engaged in living despite having a terminal diagnosis, and those that helped clients prepare for death through supportive care and closure. Therapists enabled clients and caregivers to engage in occupations that had this dual focus, and this was further reflected as part of their role in their daily occupational therapy processes. Therapists therefore modified their occupational therapy process to work from a palliative approach to ensure their clients' needs were met. The goals of the client and caregivers became central to all stages of the process. Therapists planned on staying in their role into the future, but noted the significant challenges of working with people who are terminally ill. Finding a work/life balance was critical, along with having adequate clinical supervision to guide reasoning and debrief with regards to dealing with death and dying. The majority of therapists reported feeling underprepared to work in this clinical area initially, and were able to identify over 250 core knowledge and skills required for competent practice in this area, with a particular emphasis on advanced communication skills related to working with people who are experiencing grief and bereavement. Therapists emphasised the qualities that they believed were important for development in students and therapists wishing to work with people living with a terminal illness. Therapists reported that more emphasis should be placed on palliative care education at an undergraduate level, with further knowledge being expanded in the workplace. Therapists in this sample have identified that this area of practice is different to other areas, as therapists face the duality of working with people who are living yet also dying. This meant that professional reasoning had a dual focus, and occupational therapy processes were changed to accommodate a palliative approach. Recognition of the uniqueness of this time of life was a key feature supporting therapists' clinical decisions. This thesis has made an original contribution to the literature and has shown that further research needs to occur to fully develop this area of practice. There is a need for further development of undergraduate curricula that will ultimately lead to more competent and better prepared therapists, as well as the development of evidence-based guidelines that identifies the scope of the role and the occupational therapy processes used with this client group. Health services now need to respond to the findings on work profiles and client demographics in order to meet the needs of these clients, and further research should be completed into confirming the professional reasoning process of therapists working with people living with a terminal illness.

Date of Award	2014
Original language	English