Importance: Underutilization of hospice occupational therapy may be attributable to a lack of evidence on efficacy. Objective: To conduct a scoping review of occupational therapy outcome studies to ascertain how efficacy is captured in the literature. Data Sources: PubMed, CINAHL, MEDLINE, Scopus, Directory of Open Access Journals, Web of Science, OT Search, and Google Scholar. Study Selection and Data Collection: Search terms: hospice, palliative care, occupational therapy, rehabilitation, outcome measure, and assessment. Inclusion criteria: research studies in English, centered on adult hospice care, published between January 1997 and September 2017, and investigated occupational therapy efficacy with an outcome measure. Exclusion criteria: systematic reviews, participants not at terminal disease end stages, or intervention program reviews lacking differentiated occupational therapy outcomes. Findings: Seven articles met the inclusion criteria. Findings include frequent use of noncontrolled, quasi-experimental, prospective research designs; a focus on occupational performance; and no generally accepted hospice occupational therapy outcome measure. Conclusion and Relevance: Outcome measures of participation in end-of-life occupations and environmental influences on occupational engagement are needed to effectively support occupational therapy practice and research with people who are terminally ill. What This Article Adds: Occupational therapy in end-of-life care is growing in complexity yet remains low in utilization. This review adds insights into current practice and future research foci for the profession.
Background: With disease progression, a terminally ill person may experience loss of physical and cognitive skills required to perform everyday activities. Such functional loss can erode autonomy and cause existential suffering. Supported engagement in everyday activities may help terminally ill people stay involved in living and cope with dying. Occupational therapy enables people to engage in valued activities at the end of life, yet remains under-utilized. Objectives: To address the perceived under-utilization of end-of-life care occupational therapy, the authors investigated how utilization of occupational therapy in end-of-life care is determined from the perspective of decision-makers and occupational therapists and then developed a model of the process. Methods: Using a grounded theory method, authors conducted two semi-structured interviews with 20 decision-makers and 21 occupational therapists. Theoretical sampling followed by paradigm analysis, yielded a data-grounded model. Results: The authors developed The Model of Occupational Therapy Utilization in End-of-Life Care. Service utilization was primarily contingent upon the decision-makers’ awareness of occupational therapy’s role in end-of-life care and further influenced by place of care cost constraints and participants’ ability to adjust focus of the occupational therapy to accommodate the patient’s dying process. Conclusion: Limited awareness of occupational therapy’s role in end-of-life care warrants research on whether modification of model constructs may increase awareness and utilization. Education is indicated to teach providers about suffering due to functional loss and how to adjust focus of occupational therapy to sustain occupational participation through decline, across different care settings, and along a range between rehabilitation-focused to participation-focused outcomes.
Occupational therapists support the occupational participation of people who are dying yet remain underutilized in end-of-life care. To explore how occupational therapists develop their role in end-of-life care to provide strategies to address underutilization. Using a grounded-theory method, semi-structured interviews were conducted with 21 occupational therapists. Three themes emerged which demonstrate participants’ role development process. Participants’ experiences with dying (Close Experience of Loss) often instilled the importance of end-of-life care. Led by these convictions (Willing to Do It), participants developed skills for end-of-life care. Reflecting on their experiences and treatment outcomes (Making a Difference), participants self-validated their role. The Model of Occupational Therapists’ Role Development in End-of-Life Care captured this process. Personal experiences and critical self-reflection may provide an adaptive means to drive role development and appropriately increase end-of-life care occupational therapy utilization.
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