Imagine that you are an only child whose mother lives alone several hours away. She is receiving palliative care services for her terminal cancer diagnosis, and she’s determined to die at home. You long to be with her during this time. Since you’re permitted to work remotely, you move in with her. However, you never knew how exhausting 24/7 care is when caring for a dying loved one.
You didn’t realize how much work hygiene care takes, for someone who can barely move. You didn’t realize that you’ll become snippy with each other, at the end of long days when you’re both tired, sad, and in pain. You didn’t realize that your mother would experience respiratory distress, and you wouldn’t know what to do - yet. You’re learning, but there is no one else learning with you, and you know you can’t keep your promise for your mother to die at home much longer without help.
One night, after the millionth scare of the week where you wonder, “Is this it?” You break down crying. You need a break. You need help, right now. But who can you call? Who can you and your mother trust to provide this intensive, last-minute care?
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Respite care services are critical for supporting death at home. These services offer short breaks for family caregivers and care recipients while another person provides caregiving services. Yet, the current landscape of respite care services in Québec is fragmented across the public and private sectors. Services are frequently difficult to access and schedule. Often, the hours are inflexible, and the services are typically staffed by homecare providers with limited specialized expertise. As a result, caregivers and care recipients may be reluctant to use these services, so they often go unused.
Other industries, such as transportation and food delivery, are developing smartphone applications (“apps”) to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and none of these appear to have been designed with families with cancer.
iRespite Services iRépit seeks to help the thousands of families who experience similar situations to the one described above. The team will collaboratively design an app for coordinating flexible and trusted in-home respite care services, provided by nurses to families coping with palliative-stage cancer in Québec. Over the next year, the team will conduct repeated online design sessions with: oncology-, palliative-, and home-care nurses; family caregivers of adults living with palliative-stage cancer; adults living with palliative-stage cancer; and other key stakeholders. These design sessions will help offer solutions for improving the coordination of respite care services in Québec, as the app is iteratively developed.
A transdisciplinary approach is needed when designing solutions for complex health systems challenges. The iRespite research program is being led by Principal Investigator Argerie Tsimicalis, PhD RN, and doctoral candidate Aimee Castro, RN. Additional team specialists include: nursing telehealth expert and PhD co-supervisor Antonia Arnaert, PhD RN; cancer mHealth expert and Opal platform co-developer John Kildea, PhD; Canada Research Chair in Inclusive Social Computing computer scientist Karyn Moffatt, PhD; Jewish General Hospital nursing and palliative care clinician scientist Bessy Bitzas, RN PhD; and the Palliative Home-Care Society of Greater Montreal nurse manager Audrey-Jane Hall, BScN RN.
Five research trainees have joined the team, as well, including: Gabrielle Lalonde-LeBlond, Joche Londoño Velez, Justine Tremblay, Tracy Nghiem, RN, MSc(A), NP Student, and Ariana Pagnotta, RN, BScN. Trainees are synthesizing varying sources of knowledge to inform the app. These projects include an environmental scan of available respite care services in Québec, and an in depth-search of the Apple and Android app stores for existing respite care apps.
The current focus of the iRespite team is on palliative oncology care in Québec, as cancer is the most common cause of death in Canada, and Québec experiences some of the highest mortality rates in the country. However, in the future, these results may be translated and adapted to other Canadian contexts and populations, supporting care and end-of-life at home, where most Canadians wish to be.
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iRespite is always seeking collaborations and feedback. If you are a student, nurse, family caregiver, adult living with cancer, or anyone else interested in discussing our research and sharing ideas, please reach out!
Aimee Castro: Twitter: @AimeeRCastro,
Email: aimee.castro2 [at] mail.mcgill.ca
Argerie Tsimicalis: Twitter: @ArgerieT,
Email: argerie.tsimicalis [at] mcgill.ca
Acknowledgements
This research is funded by the Rossy Cancer Network (RCN). The RCN is a partnership of the McGill University Faculty of Medicine, St. Mary’s Hospital Center, the Jewish General Hospital and the McGill University Health Centre. The RCN is dedicated to providing world-class patient care, research and teaching. Its mission is to improve quality, effectiveness and efficiency across the continuum of cancer care. See mcgill.ca/rcr-rcn for more details.
Aimee Castro is the recipient of a 2020 studentship funded by the Canadian Center for Applied Research in Cancer Control (ARCC), which is funded by the Canadian Cancer Society (Grant #2015- 703549). Dr. Tsimicalis is a Junior 1 Research Scholar funded by the Fonds de recherche du Québec (FRQS).