Journal Article

239 The undervalued role of nurses in shared decision making: insights from interviews across disease areas in Belgium

Janssens, Rosanne, Sabino, João, Verstockt, Bram, Desmet, Thomas, Huys, And Isabelle, Ferrante, Marc, Seldam, Silène Ten, Pelicaen, Conny, Delforge, Michel, Vanhellemont, Anneleen, Joyner, Katie, Waele, Liesbeth De, Mommen, Mieke, Aviv, Ariel, Audenhove, Chantal Van, Schoefs, Elise, Shoham, Varda, Loddewijkx, Elien, Meeus, Luc, Verbeke, Charlotte, Lerinckx, Evelyn, Morgan, Kate, Broekmans, Jolien, Straetemans, Noortje, Michiels, Lauren, Debrun, Lynn, Vermeire, Séverine

2024

Overview

IntroductionMost shared decision making (SDM) models have been limited to the patient-clinician dyad and do not include nurses. The goal of this study is to investigate nurse’s role in the SDM process in inflammatory bowel disease (IBD), multiple myeloma (MM), and Duchenne muscular dystrophy (DMD).MethodsA comparative analysis was performed, based on three disease-specific qualitative studies using semi-structured interviews with patients (n=25), caregivers (n=11), clinicians (n=18), nurses (n=14), and other members of the multidisciplinary team (n=14) involved in the care pathway of IBD, MM, or DMD patients in Belgium.ResultsAcross disease areas, participants underscored the crucial role of nurses in the SDM process as an accessible point of contact for patients that can provide emotional, informational, and decisional support. Specifically for IBD and MM, nurses’ complementary role to gastroenterologists and haematologists was emphasized, performing the steps of the OPTION instrument that clinicians either did not execute or executed to a lesser extent. However, the allocation of tasks and responsibilities to nurses varied based on the hospital and clinician, thereby influencing the extent of nurses’ role in SDM. In DMD also other members of the multidisciplinary team next to nurses and clinicians had a role in the SDM process (table 1).Discussion and ConclusionResults indicate the need for an increased recognition and a more strengthened role of the nurse in the SDM process. Future research should develop an interprofessional SDM model specific to IBD, MM, and DMD, as it could enhance the multidisciplinary nature of care delivery and its overall quality thereof.Abstract 239 Table 1Different roles in the shared decision making process of the multidisciplinary team involved in the care of individuals with Duchenne muscular dystrophy Leading role Supportive role Informative role Limited role Specialty Neurologist- Child psychologist- Nurse- Study coordinator- Physiotherapist- Social worker- Occupational therapist- Dietitian Task Primary responsibility to inform caregivers/patients, while also ensuring that the rest of the healthcare team is well-informed and able to address any additional questions or concerns caregivers/patients may raise.An intermediary between the neurologist and the patient, facilitating the transmission of questions. Exploring underlying motivations and ensuring that patients and caregivers fully comprehend all information presented.Provision of additional information on clinical trials or on physical aspects of treatments.Have a rather limited influence or involvement in the decision-making process. Supporting quote ‘I am responsible for informing patients. I believe that is my task. And the rest of the team should be well-informed so that they can handle other additional questions, because sometimes questions also come their way. They should be able to handle those and bounce them back to me if there's something they can't answer.’ (M14) ‘I do think it's my role, on one hand, to uncover the motivation behind their choice, but on the other hand, to also verify whether they have truly understood everything the physician explained.’ (M3) ‘Often before starting a treatment, they reach out to me to thoroughly discuss all the specifics, particularly focusing on practical aspects. However, the physician is the one who explains the mechanism of action of that treatment.’ (M12) ‘I see that happening here in our clinic, our physician always engages in conversations with the patients. I often see the physician consulting with study nurses and the physiotherapists.’ … ‘I see it happening regularly. But I myself am not really involved in that.’ (M8)

• Publisher: BMJ Publishing Group Ltd,BMJ Publishing Group LTD
• Subject: Caregivers / Collaboration / Decision making / Inflammatory bowel disease / Multidisciplinary teams / Muscular dystrophy / Nurses / Patient education / Patients / Shared decision making / Shared decision making with breast cancer patients – does it work?