Congenital Adrenal Hyperplasia (CAH) describes a set of autosomal recessive diseases which affect enzymes mediating steroid biochemistry in the adrenal glands. In chromosomal females, the excess androgens associated with CAH cause virilization. Females with a high degree of virilisation can undergo feminizing genitoplasty in infancy or later in life. Parents and guardians are the medical proxies for their infants and therefore make decisions on their behalf. However, decision-making about feminizing genitoplasty can be very difficult. One tool that could help in such a situation is an electronic patient decision aid (PtDA). However, a PtDA for feminizing genitoplasty does not exist and there is insufficient information in existing literature to inform its design and development. Thus, the objectives of this study were to: (1) Identify user requirements, (2) Develop specifications for the design and development of the PtDA, and (3) Understand the best way to implement and distribute the PtDA We used the persona-scenario methodology to acquire user-requirements. Persona-scenario sessions were conducted with four parents of children with CAH, two adult patients with CAH, and four healthcare practitioners. Participants created fictitious personas, and scenarios wherein their personas interacted with an idealized version of the PtDA. Transcripts of these persona-scenarios and facilitator notes were analyzed to identify user-requirements, which were interpreted into specifications. Participants provided user requirements about (1) information and decisional content in the PtDA, (2) proposed functionalities for the PtDA, (3) web usability, and (4) implementation context. Many of these requirements are supported by existing literature. The requirements identified in this project will inform the design and development of a PtDA for feminizing genitoplasty in patients with CAH. However, further research is necessary to understand how to best implement these requirements and to ensure that the gathered information is useful for a broad range of potential end users. / Thesis / Master of Science (MSc)

Optimizing meaningful engagement of older adults with multimorbidity and their caregivers as partners in health care research / Background: The importance of engaging older adults (> 65 years) with multimorbidity and their caregivers as partners in health care research has been widely recognized. Inclusion of patients as research partners has resulted in largely positive effects. However, little is known about how best to engage and support them in this role. The objective of this study was to examine how to optimize meaningful engagement of older adults with multimorbidity and their caregivers as research partners. Methods: The research objective was addressed using the persona-scenario method. Study participants were older adults with previous experience as a research partner or a research participant. Participants worked in pairs to create a persona and a scenario about how their persona(s) was involved on the research team. Analysis was conducted in two phases: (a) identification of themes, subthemes, and codes using a qualitative descriptive approach, and (b) interpretation of themes and subthemes into design specifications (actions and products). Results: Four persona-scenario sessions were held with 8 patient participants. Three major themes emerged from the data: (a) recruitment of patient or caregiver research partners (PCRPs); (b) planning for meaningful engagement; and (c) establishing collaborative relationships. These major themes contained 15 corresponding subthemes, and design specifications (52 actions and 37 products). Findings highlight key factors influencing the engagement of older adults with multimorbidity and their caregivers as research partners, such as the need for: early engagement of PCRPs; clarification of PCRPs’ roles and responsibilities; a flexible patient-centred approach to PCRP involvement; identifying and addressing barriers to their engagement (e.g., caregiving support, transportation); training about research; and continued dialogue and feedback to clarify roles and manage expectations. The results are important for identifying ways to promote greater patient engagement in research and ensure that the research reflects the needs of the patients it strives to serve. / Thesis / Master of Science (MSc) / The importance of engaging patients with multimorbidity and their caregivers as partners in health care research has been widely recognized. However, little is known about how to best engage and support them in this role. The objective of this study was to examine how researchers can best engage and support older adults with multimorbidity and their caregivers as research partners in health care research teams. The persona-scenario method was used for participants to create fictional stories. These stories were analyzed to shed light on specific strategies that can support older adults and their caregivers as partners on health care research teams, such as a patient-centred approach, identifying and addressing barriers to engagement, and clarifying roles and responsibilities on the research team. The results from this study can be used to inform research, policy, and education on supporting older adults with multimorbidity and their caregivers as research partners.