User-Centric Design of a Proof-of-Concept of a Smartphone Application to Connect Cancer Caregivers with On-Demand Nursing Respite Care Services

Awardee: Aimee Castro

Graduate Program: PhD

Institution: McGill University

Supervisor(s): Argerie Tsimicalis

ARCC Program Area(s):

Competition: 2020

Project Summary:

As medical therapies have advanced, cancer has become a chronic condition for many survivors, necessitating ongoing caregiving in the community. This caregiving is most often provided by family and friends. The responsibilities of these family caregivers can include facilitating mobilization, monitoring symptoms, administering medications, providing emotional support, and managing family finances. While caregivers and care recipients can find joy and growth through caregiving, in a healthcare system with limited and inflexible in-home support services, this caregiving work can cause caregivers to become overwhelmed. A recent study of caregiving found all stakeholder groups (managers, clinicians, researchers, and caregivers) agreed that cancer research on supportive home care intervention was a top priority. One important kind of home care support is respite care, where a support provider comes to the family’s home to temporarily take over the family caregiver’s role, so that both the family caregiver and person receiving care can have a mental and physical break from each other. However, for families coping with complex conditions like cancer, finding flexible, skilled, and trusted respite care services can seem impossible.

The purpose of my doctoral research is to design an app that will connect family caregivers with on-demand, nurse-provided respite care services tailored to the needs of the oncology population. New smartphone applications (“apps”) may help meet cancer caregivers’ needs for flexible respite care services. In other service industries, smartphone applications are creating more flexible customer experiences. Industry examples include transportation (Uber) and travel (AirBnB). Nurses have the trusted skill sets to establish a supportive respite care relationship with families coping with cancer. We will convene a committee to oversee the process of designing an app with input solicited from nurses, engineers, software experts, family caregivers, and individuals who have been diagnosed with cancer. Canada cannot afford to have its cancer caregivers burn out; an app resulting from the development of this proof-of-concept may help to reduce caregiver distress and better support both, individuals with cancer and their family caregivers.