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Purpose: The purpose of this scholarly project is to identify and address the factors that serve as barriers to engagement in valued occupations for children with serious or life-threatening illness.
Background: Children with serious or life-threatening illness are at great risk for occupational deprivation due to their complex medical needs as well as the inhibiting physical symptomology that may accompany their diagnoses (Doukkali et al., 2013; Kasven-Gonzales & Miale, 2010). Individuals working with this population have reported a need for more specialized education for working with children with medically complex needs (Gysels et al., 2005; Whiteford et al., 2020). It is essential to address the barriers to occupational engagement for this population, as occupational deprivation has been shown to decrease quality of life, and increase the feelings of depression, isolation, and risk of suicide (Doukkali et al., 2013; Miralles et al., 2016).
Methods: Methods for this scholarly project included a literature review, clinical needs assessment, and use of the Person Environment & Occupation model as a conceptual framework (Law et al., 1996). This population was clinically assessed at a pediatric hospice and respite home in the Midwest, USA.
Results: There is a need for further education pertaining to non-verbal communication, activity and environmental modification, and behavioral response protocol for individuals working with medically complex children. The findings from the literature review and population assessment informed the development of an educational resource to serve as an all-encompassing guide to understanding the occupational needs of this population. Topics within this educational guide include differentiation between palliative care, respite care, and hospice care, an overview of common diagnoses, medical equipment and devices used by this population, education on behavior identification and response, non-verbal communication strategies, activity and environmental modifications as well as a guide on how to use various piece of adaptive equipment for occupational engagement.
Conclusion: There is a need to address occupational deprivation among children with medically complex conditions. This educational guide will enhance providersâ€™ skill set, knowledge, and confidence to facilitate occupational engagement that promotes a sense of competence, control, and normalcy in the lives of this population. (Budash, 2022; Hammil et al., 2014).
occupational deprivation, medically complex children, occupational engagement
Bourque, Allyson, "The How To’s For Engaging with Medically Complex Children: A Resource Guide" (2023). Frank Low Research Day Posters. 2.