Browsing by Author "De Vera, Mary A."

Now showing 1 - 2 of 2
  • Thumbnail Image
    ItemOpen Access
    Shared decision making in pregnancy in inflammatory bowel disease: design of a patient orientated decision aid
    (2021-07-30) Williams, Astrid-Jane; Karimi, Neda; Chari, Radha; Connor, Susan; De Vera, Mary A.; Dieleman, Levinus A.; Hansen, Tawnya; Ismond, Kathleen; Khurana, Rshmi; Kingston, Dawn; O’Connor, Katie; Sadowski, Daniel C.; Fang-Hwa, Flora; Wine, Eytan; Leung, Yvette; Huang, Vivian
    Abstract Background Research has indicated a lack of disease-specific reproductive knowledge among patients with Inflammatory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”. Furthermore, a lack of knowledge may contribute to inappropriate medication changes during or after pregnancy. Decision aids have been shown to support decision making in pregnancy as well as in multiple other chronic diseases. A published decision aid for pregnancy in IBD has not been identified, despite the benefit of pre-conception counselling and patient desire for a decision support tool. This study aimed to develop and test the feasibility of a decision aid encompassing reproductive decisions in the setting of IBD. Methods The International Patient Decision Aid Standards were implemented in the development of the Pregnancy in IBD Decision Aid (PIDA). A multi-disciplinary steering committee was formed. Patient and clinician focus groups were conducted to explore themes of importance in the reproductive decision-making processes in IBD. A PIDA prototype was designed; patient interviews were conducted to obtain further insight into patient perspectives and to test the prototype for feasibility. Results Issues considered of importance to patients and clinicians encountering decisions regarding pregnancy in the setting of IBD included fertility, conception timing, inheritance, medications, infant health, impact of surgery, contraception, nutrition and breastfeeding. Emphasis was placed on the provision of preconception counselling early in the disease course. Decisions relating to conception and medications were chosen as the current focus of PIDA, however content inclusion was broad to support use across preconception, pregnancy and post-partum phases. Favourable and constructive user feedback was received. Conclusions The novel development of a decision aid for use in pregnancy and IBD was supported by initial user testing.
  • Thumbnail Image
    ItemOpen Access
    “The medications are the decision-makers…” Making reproductive and medication use decisions among female patients with rheumatoid arthritis: a constructivist grounded theory
    (2022-01-22) Rebić, Nevena; Munro, Sarah; Garg, Ria; Hazlewood, Glen; Amiri, Neda; Baldwin, Corisande; Ensworth, Stephanie; Proulx, Laurie; De Vera, Mary A.
    Abstract Objective To examine how female patients with RA form decisions about having children, pregnancy, and medication use. Methods We employed a constructivist grounded theory design and recruited female participants who are 18 years or older, have a rheumatologist-confirmed RA diagnosis, live in Canada, and are able to communicate in English or French. We collected data through semi-structured individual and focus group interviews using telephone or video conferencing technology. Data collection and analysis were iterative, employed theoretical sampling, reflexive journaling, and peer debriefing, and culminated in a theoretical model. Results We recruited 21 participants with a mean age of 34 years and median 10 years since RA diagnosis. Overall, 33% had never been pregnant, 57% had previously been pregnant, and 10% were pregnant at the time of interview. Of those who had experienced pregnancy, 64% had at least one pregnancy while diagnosed with RA and of those, 56% used DMARD(s) during a pregnancy. We constructed a patient-centred framework depicting the dynamic relationships between 4 decision-making processes—(1) using medications, (2) having children, (3) planning pregnancy, and (4) parenting—and the substantial impact of healthcare providers on patients’ experiences making these decisions. These processes were further influenced by participants’ intersecting identities and contextual factors, particularly attitudes towards health and medications, disease onset and severity, familial support system, and experiences interacting with the healthcare system. Conclusion Our framework provides insight into how patients make reproductive decisions in the context of managing RA and the opportunities for providers to support them at each decision-making process. A patient-centred care approach is suggested to support female patients with RA in making reproductive and medication choices aligning with their individual desires, needs, and values.