Research

The Design, Development, and Usability Testing of an E-Health Program for Youth with Osteogenesis Imperfecta (Teens OI) 

There  is  an  urgent  need  for  innovative  approaches  to  address the self-management needs of young adults with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. A promising  field,  self-management  interventions,  delivered  over  the  internet, can improve selected outcomes in certain childhood illnesses. The aim of this ongoing research project is to design and develop an online, self-management program, Teens Taking Charge: Managing Osteogenesis Imperfecta Online (Teens OI). A user-centered, qualitative design was chosen, including creating a Teens OI council and actively seeking input from youth, parents, and OI experts.  The design  and  development  of  the  website  is  guided  by  Garrett’s Theory of User Experience, which includes 5 different planes of a website that affect the user experience: surface, skeleton, structure, scope and strategy, and will be descriptively analyzed accordingly. 

Team members: 

• Principal Investigator: Dr. Argerie Tsimicalis 
• Co-Investigators: Dr. Jennifer Stinson, Dr. Frank Rauch, Kelly Thorstad, Dr. Reggie Hamdy, Dr. Mitchell Bernstein, Dr. Noemi Dahan-Oliel, Dr. Louis-Nicolas Veilleux, and Dr. Telma Palomo 
• Coordinator: Sofia Addab 
• Post-doctoral Fellow: Dr. Raissa Passos dos Santos 
• Research Assistants: Dr. Laura Massochin; Khadidja Chougui 

Funding: Shriners Children’s Developmental Grant (2021-2022) 

Presentations: 

1. Passos dos Santos, R., Rauch, F., Stinson, J., Chougui, K., Massochin, L., Veilleux, L-N., Bernstein, M., Dahan-Oliel, N., Palomo, T., Hamdy, R., Addab, S., & Tsimicalis, A. (2022, August 30–September 2). Design and Development of an E-Health Program for Youth with Osteogenesis Imperfecta – Teens OI. [Poster Presentation]. 14th International Conference on Osteogenesis Imperfecta, Sheffield, UK. 

1. Passos dos Santos, R., Rauch, F., Stinson, J., Thorstad, K., Chougui, K., Massochin, L., Veilleux, L-N., Bernstein, M., Dahan-Oliel, N., Palomo, T., Hamdy, R., Addab, S., & Tsimicalis, A. The Need to Foster Autonomy, Self-Advocacy and Empowerment in the Design and Development of Teens OI: Preliminary Analysis [presentation]. QUALITYOFLIFE4OI conference; February 10th-11th, 2023; virtual 

Publications:  

1. Passos dos Santos, R., Rauch, F., Stinson, J., Chougui, K., Massochin, L., Veilleux, L-N., Bernstein, M., Dahan-Oliel, N., Palomo, T., Hamdy, R., Addab, S., & Tsimicalis, A.  (2023). Design and Development of an E-Health Program for Youth with Osteogenesis Imperfecta – Teens OI.  Abstracts from the 14th International Conference on Osteogenesis Imperfecta, Sheffield, UK, 30 August – 2 September 2022. JBMR Plus, 7: e10718. https://doi.org/10.1002/jbm4.10718 
2. Tsimicalis A, Stinson J, Thorstad K, Rauch F, Hamdy R, Chougui K, Addab S, Palomo T, Bernstein M, Dahan-Oliel N, Veilleux L, Massochin Nunes Pinto L, Passos dos Santos R. The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study. JMIR Res Protoc 2023;12:e47524 https://doi.org/10.2196/47524 

iRespite Services iRépit 

For Aimee’s doctoral research, she is co-designing with families and nurses, a prototype of a smartphone app for coordinating trusted and flexible respite care services to families coping with palliative-stage cancer. The initial idea for this project was seeded several years ago, based on her experiences as a family caregiver, homecare worker, and tech tutor. With the support of her advisors and committee, the project has been refined and re-imagined into the current iRespite Services iRépit research program. 

Team members: 

• Principal Investigator: Dr. Argerie Tsimicalis 

• PhD Candidate: Aimee Castro 
• Co-Investigators: 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. 
• Undergraduate and Graduate Students: Gabrielle Lalonde-LeBlond, Joche Londoño Velez, Tracy Nghiem, RN, MSc(A), NP Student, and Ariana Pagnotta, RN, BScN.  

Funding:  

Argerie Tsimicalis is supported by a Chercheur-Boursier Junior 1 from the Fonds de Recherche du Québec-Santé (Québec Medical Research Council). 

Aimee Castro is a Canadian Nurses Foundation scholar (2020). She is supported by a Fonds de Recherche du Québec-Santé Formation de Doctorat (doctoral research award), a graduate student award from the Newfoundland & Labrador Registered Nurses’ Education & Research Trust, and a 2020 studentship funded by the Canadian Center for Applied Research in Cancer Control (ARCC). ARCC receives core funding from the Canadian Cancer Society (Grant 2015-703549). 

Presentations: See this link for ongoing project updates. 

Publications:  

Three published abstracts:

2022

• An Environmental Scan of Respite Care Services Available in Québec, Canada: Preliminary Results. G Lalonde-LeBlond, A Castro, A Arnaert, J Kildea, K Moffatt, V Bitzas, … International Journal of Integrated Care 22 (S3)
• Developing a Smartphone Application for Co-ordinating Respite Care Services for Families with Palliative-Stage Cancer: A Research Proposal. A Castro, A Arnaert, K Moffatt, J Kildea, AJ Hall, V Bitzas, A Tsimicalis. International Journal of Integrated Care (IJIC) 22
• A protocol to systematically search the Apple and Google Play stores for respite care smartphone applications. A Castro, J Londono, T Nghiem, J Tremblay, V Bitzas, J Kildea, K Moffatt, … International Journal of Integrated Care (IJIC) 22

Two publications:

• “Informal caregiver” in nursing: An evolutionary concept analysis. AR Castro, A Arnaert, K Moffatt, J Kildea, V Bitzas, A Tsimicalis. Advances in Nursing Science, 10.1097
• Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study. AR Castro, A Arnaert, K Moffatt, J Kildea, V Bitzas, A Tsimicalis. JMIR Research Protocols 10 (12), e34652

The Feasibility and Clinical Utility of the Use of Virtual Reality during Medically-Prescribed Procedures in a Pediatric Orthopedic Hospital 

We have been piloting the use of virtual reality (VR) as a distraction tool to help children cope with procedural pain and anxiety at the Shriners Hospitals for Children-Canada (SHC-Canada). The procedures for which VR has been used include: intravenous insertions, blood draws, casting, cast removal, pin removal, Botox injections, pre-operative anxiety, anesthesia induction, and post-operative pain. Since the beginning of VR use at the SHC-Canada, we have been collaborating with Paperplane Therapeutics, a local company that develops pediatric VR software. We are currently finalizing our study on the feasibility of VR for peri-operative procedures and developing policies and procedures for the implementation of VR at the hospital.  

Also, we are currently serving as a participating site for the CIHR-funded PINS clinical trial led by Dr Sylvie Le May at CHU Ste Justine, which compares VR distraction to passive iPad distraction during the removal of pins and sutures. ClinicalTrials.gov: NCT03680625 

As we wrap up our research studies, we are focusing our efforts towards the development of resources to disseminate research evidence about VR and to facilitate the integration of VR into clinical practices. You can find our resources here or by going to our McGill Virtual Reality Hub for Child Care.

Team members: 

• Principal Investigator: Dr. Argerie Tsimicalis 
• Co-Investigators: Kelly Thorstad, Dr. Reggie Hamdy, Dr. Gianluca Bertolizio 
• Coordinator: Sofia Addab, MSc 
• Research Assistants: Yu Tong Huang, MD candidate 

Funding: Tunis Hospital Daddy Program 

Presentations: 

1. Addab, S., Le May, S., Thorstad, K., Tsimicalis, A., & Hamdy, R. The Feasibility, Clinical Utility, Initial Clinical Efficacy, and Tolerability of the Use of Virtual Reality during Medically Prescribed Procedures [presentation]. PICH2GO Conquering the Hurt Conference; November 3rd, 2020; virtual 
2. Addab, S., Le May, S., Thorstad, K., Tsimicalis, A., & Hamdy, R. The Feasibility and Clinical Utility of the Use of Virtual Reality during Medically Prescribed Procedures: The Preliminary Results [poster]. MASH Symposium; 2020; virtual 
3. Addab, S., Le May, S., Thorstad, K., Tsimicalis, A., & Hamdy, R. The Feasibility and Clinical Utility of the Use of Virtual Reality during Medically Prescribed Procedures: The Preliminary Results [invited speaker]. IRR Research Day: Innovation 2020, February 2020; Montreal, Canada  

Publications:  

1. Addab, S., Hamdy, R., Le May, S., Thorstad, K., and Tsimicalis, A. (2022). The Use of Virtual Reality During Medical Procedures in a Pediatric Orthopedic Setting: A Mixed-Methods Pilot Feasibility Study. Pediatr and Neonatal Pain, 00,1-15. https://doi.org/10.1002/pne2.12078 
2. Addab, S., Hamdy, R., Thorstad, K., Le May, S., & Tsimicalis, A. (2022). Use of virtual reality in managing paediatric procedural pain and anxiety: An integrative literature review. Journal of Clinical Nursing, 00, 1– 28. https://doi.org/10.1111/jocn.16217 

The Collaborative Production of “The Hospital of No Surprises”: An Animated Ethonodrama Designed with Children with Osteogenesis Imperfecta to Optimize their Surgical Experiences

Children with chronic illness have expressed the desire to be informed about their health situation and their proposed plan of care, and to participate in decisions about their health. Researchers have shown that using various forms of play (e.g., artmaking, crafts, theatre) to interact with children can facilitate children’s voices, foster trust and connection with adults, and support children’s efforts to process and discuss their experiences.

The purpose of this study is to (1) professionally produce an animated version of a children’s play collaboratively written by Brenda Cleary (RN) and eleven children (7 with OI and 4 siblings without OI) from Shriners Hospitals for Children-Canada called, “The Hospital of Unhappy Surprises”; and (2) create an accompanying educational toolkit in collaboration with the global OI community (children, parents, and key stakeholders).

This practice-based study will draw from three interrelated frameworks: moral experience, social constructivism, and ethnodramatic storytelling. Children with OI and/or their siblings (ages 4-18) will participate in a semi-structured interview using puppets and drama (i.e., acting, pretend) to share their experiences and thoughts about the play. Adults who are involved with the OI community (e.g., clinicians, community organizations, parents) will participate as members of an Advisory Council to guide the research team in developing the production and educational toolkit based on children’s feedback. By creating an open access resource, we hope to: (a) empower healthcare providers to make care decisions with children and families rather than simply for them; (b) help children express their voices; and (c) foster a sense of shared values and goals within the healthcare team and institution.

This practice-based study represents the push needed to professionally produce educational resources that support the needs of children with OI and enhance clinician’s abilities to meet their needs in a healthcare setting.   

Team members: 

• Principal Investigator: Dr. Argerie Tsimicalis 

• Co-Investigators: Dr. Frank Rauch, Dr. Franco A. Carnevale 

• Coordinator: Yi Wen (Jenny) Wang

• Animator: Stephanie Smith 

Funding: Brittle Bone Society (2023-2024)