Author:
Pomey Marie-Pascale,Paquette Jesseca,Nelea Monica Iliescu,Vialaron Cécile,Mourad Rim,Bouchard Karine,Normandin Louise,Côté Marie-Andrée,Desforges Mado,Pomey-Carpentier Pénélope,Fortin Israël,Ganache Isabelle,Régis Catherine,Rosberger Zeev,Charpentier Danielle,Vachon Marie-France,Bélanger Lynda,Dorval Michel,Ghadiri Djahanchah P.,Lavoie-Tremblay Mélanie,Boivin Antoine,Pelletier Jean-François,Fernandez Nicolas,Danino Alain M.,de Guise Michèle
Abstract
Abstract
Objectives
Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams.
Methods
A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools.
Results
The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs’ activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need.
Conclusion
Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.
Publisher
Springer Science and Business Media LLC
Reference39 articles.
1. Lacoursière A. Registre québécois du cancer: Le Québec est « dans le noir ». La Presse. https://www.lapresse.ca/actualites/sante/2022-06-14/registre-quebecois-du-cancer/le-quebec-est-dans-le-noir.php. Published June 14, 2022. Accessed September 12, 2022.
2. Patt D, Gordan L, Diaz M, et al. Impact of COVID-19 on Cancer Care: How the Pandemic Is Delaying Cancer Diagnosis and Treatment for American Seniors. JCO Clin Cancer Inform. 2020;4:1059–71. https://doi.org/10.1200/CCI.20.00134.
3. Rossy Cancer Network. P2 - Outpatient rating of treatment experience. Accessed September 7, 2022. https://www.mcgill.ca/rcr-rcn/quality-dimension/p2-outpatient-rating-treatment-experience
4. Pomey MP, de Guise M, Desforges M, et al. The Patient Advisor, an Organizational Resource as a Lever for an Enhanced Oncology Patient Experience (parole-Onco): A Longitudinal Multiple Case Study Protocol. BMC Health Serv Res. 2021;21(1):10. https://doi.org/10.1186/s12913-020-06009-4.
5. Castro EM, Malfait S, Van Regenmortel T, Van Hecke A, Sermeus W, Vanhaecht K. Co-design for implementing patient participation in hospital services: A discussion paper. Patient Educ Couns. 2018;101(7):1302–5. https://doi.org/10.1016/j.pec.2018.03.019.