Type 1 diabetes is an autoimmune disease resulting from insulin deficiency and must be carefully ... more Type 1 diabetes is an autoimmune disease resulting from insulin deficiency and must be carefully managed to prevent serious health complications. Diabetes education and management strategies usually focus on meeting the decision-making needs of children and their families, but little is known about the decisional needs of people with adult-onset type 1 diabetes. The aim of this study was to explore the diabetes-related decision-making needs of people diagnosed with adult-onset type 1 diabetes. An interpretive descriptive qualitative study was conducted. Participants who self-identified as having adult-onset type 1 diabetes were interviewed using a semistructured interview guide. Transcripts were coded to identify needs, supports and barriers using thematic analysis. Participating in the study were 8 adults (2 men, 6 women), ages 33 to 57, with type 1 diabetes for durations of 1 to 20 or more years. Their decision-making needs are summarized in 6 broad themes: 1) people diagnosed with type 1 diabetes are launched into a process of decision-making; 2) being diagnosed with type 1 diabetes means you will always have to make decisions; 3) knowledge is crucial; 4) personal preferences matter; 5) support is critical for decisions about self-care in type 1 diabetes; 6) living with type 1 diabetes means making very individualized decisions about daily life. The findings describe the sudden and ubiquitous nature of type 1 diabetes decision-making and the need to tailor approaches for making care decisions in type 1 diabetes. People diagnosed with adult-onset type 1 diabetes require access to reliable information, support and opportunities for participation in decision-making.
Background There is growing evidence that context mediates the effects of implementation interven... more Background There is growing evidence that context mediates the effects of implementation interventions intended to increase healthcare professionals’ use of research evidence in clinical practice. However, conceptual clarity about what comprises context is elusive. The purpose of this study was to advance conceptual clarity on context by developing the Implementation in Context Framework, a meta-framework of the context domains, attributes and features that can facilitate or hinder healthcare professionals’ use of research evidence and the effectiveness of implementation interventions in clinical practice. Methods We conducted a meta-synthesis of data from three interrelated studies: (1) a concept analysis of published literature on context (n = 70 studies), (2) a secondary analysis of healthcare professional interviews (n = 145) examining context across 11 unique studies and (3) a descriptive qualitative study comprised of interviews with heath system stakeholders (n = 39) in four ...
Background Achilles tendon ruptures are common injuries in an otherwise healthy, active populatio... more Background Achilles tendon ruptures are common injuries in an otherwise healthy, active population. Several treatment options exist, with both surgical and non-surgical options. Each treatment option has a unique set of risks and harms, which may present patients with decisional conflict. The aim of the proposed study is to develop, alpha test and field test a patient decision aid for patients presenting with acute Achilles tendon ruptures. Methods This is a three-stage study protocol. First, we will assemble a multi-disciplinary steering group including patients, clinicians, educators, and researchers to develop the patient decision aid prototype using the Ottawa Decision Support Framework. Second, we will perform a mixed-methods alpha test of the decision aid prototype with patients and clinicians experienced in acute Achilles tendon ruptures. Outcomes measured will include acceptability and usability of the patient decision aid measured using validated outcome scales and semi-str...
ACME: An International Journal for Critical Geographies, 2016
The lack of research to effectively address inequity within Canadian society is an indicator of t... more The lack of research to effectively address inequity within Canadian society is an indicator of the failure of mainstream research approaches and practices to engage with all populations. The purpose of this paper is to describe the development of a collaborative framework defined by community members and their research partners as ethical, useful and relevant. Two essential phases in negotiating a collaborative framework for a community-research partnership, and the steps in a community based participatory approach are described: 1) establish guiding features of a collaborative framework: i) form an advisory group, ii) develop ethical guidance, iii) agree upon underlying theoretical concepts for the research study, and; 2) engage in research actions that support co-creation of knowledge throughout study processes. The case study example used to illustrate the collaborative framework was conducted by and with a First Nations, Inuit and Metis women’s community and research partners t...
Background Researchers developing personal health tools employ a range of approaches to involve p... more Background Researchers developing personal health tools employ a range of approaches to involve prospective users in design and development. Objective The aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools. Methods We conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis. Results We retained 11 items in a 3-factor stru...
Background When designing and developing patient decision aids, guidelines recommend involving pa... more Background When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. Methods We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. Results We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at le...
Background The objective of this International Patient Decision Aids Standard (IPDAS) review is t... more Background The objective of this International Patient Decision Aids Standard (IPDAS) review is to update and synthesize theoretical and empirical evidence on how balanced information can be presented and measured in patient decision aids (PtDAs). Methods A multidisciplinary team conducted a scoping review using 2 search strategies in multiple electronic databases evaluating the ways investigators defined and measured the balance of information provided about options in PtDAs. The first strategy combined a search informed by the Cochrane Review of the Effectiveness of Decision Aids with a search on balanced information. The second strategy repeated the search published in the 2013 IPDAS update on balanced presentation. Results Of 2450 unique citations reviewed, the full text of 168 articles was screened for eligibility. Sixty-four articles were included in the review, of which 13 provided definitions of balanced presentation, 8 evaluated mechanisms that may introduce bias, and 42 qu...
Background Patients with kidney failure experience a complex decision on dialysis modality perfor... more Background Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients’ knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. Method A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of t...
Background: Rates of contralateral prophylactic mastectomy (CPM) continue to rise internationally... more Background: Rates of contralateral prophylactic mastectomy (CPM) continue to rise internationally despite evidence-based guidance strongly discouraging its use in most women with unilateral breast cancer. The purpose of the present study was to develop and assess the feasibility of a knowledge translation tool [a patient decision aid (DA)] designed to enhance evidence-informed shared decision-making about CPM. Methods: A consultation DA was developed using the Ottawa Patient Decision Aid Development eTraining in consultation with clinicians and knowledge translation experts. The final DA was then assessed for feasibility with health care professionals and patients across Canada. The assessment involved a survey completed online (health care professionals) or by telephone (patients). Survey data were analyzed using descriptive statistics for closed-ended questions and qualitative content analysis for open-ended questions. Results: The 51 participants who completed the survey included...
Type 1 diabetes is an autoimmune disease resulting from insulin deficiency and must be carefully ... more Type 1 diabetes is an autoimmune disease resulting from insulin deficiency and must be carefully managed to prevent serious health complications. Diabetes education and management strategies usually focus on meeting the decision-making needs of children and their families, but little is known about the decisional needs of people with adult-onset type 1 diabetes. The aim of this study was to explore the diabetes-related decision-making needs of people diagnosed with adult-onset type 1 diabetes. An interpretive descriptive qualitative study was conducted. Participants who self-identified as having adult-onset type 1 diabetes were interviewed using a semistructured interview guide. Transcripts were coded to identify needs, supports and barriers using thematic analysis. Participating in the study were 8 adults (2 men, 6 women), ages 33 to 57, with type 1 diabetes for durations of 1 to 20 or more years. Their decision-making needs are summarized in 6 broad themes: 1) people diagnosed with type 1 diabetes are launched into a process of decision-making; 2) being diagnosed with type 1 diabetes means you will always have to make decisions; 3) knowledge is crucial; 4) personal preferences matter; 5) support is critical for decisions about self-care in type 1 diabetes; 6) living with type 1 diabetes means making very individualized decisions about daily life. The findings describe the sudden and ubiquitous nature of type 1 diabetes decision-making and the need to tailor approaches for making care decisions in type 1 diabetes. People diagnosed with adult-onset type 1 diabetes require access to reliable information, support and opportunities for participation in decision-making.
Background There is growing evidence that context mediates the effects of implementation interven... more Background There is growing evidence that context mediates the effects of implementation interventions intended to increase healthcare professionals’ use of research evidence in clinical practice. However, conceptual clarity about what comprises context is elusive. The purpose of this study was to advance conceptual clarity on context by developing the Implementation in Context Framework, a meta-framework of the context domains, attributes and features that can facilitate or hinder healthcare professionals’ use of research evidence and the effectiveness of implementation interventions in clinical practice. Methods We conducted a meta-synthesis of data from three interrelated studies: (1) a concept analysis of published literature on context (n = 70 studies), (2) a secondary analysis of healthcare professional interviews (n = 145) examining context across 11 unique studies and (3) a descriptive qualitative study comprised of interviews with heath system stakeholders (n = 39) in four ...
Background Achilles tendon ruptures are common injuries in an otherwise healthy, active populatio... more Background Achilles tendon ruptures are common injuries in an otherwise healthy, active population. Several treatment options exist, with both surgical and non-surgical options. Each treatment option has a unique set of risks and harms, which may present patients with decisional conflict. The aim of the proposed study is to develop, alpha test and field test a patient decision aid for patients presenting with acute Achilles tendon ruptures. Methods This is a three-stage study protocol. First, we will assemble a multi-disciplinary steering group including patients, clinicians, educators, and researchers to develop the patient decision aid prototype using the Ottawa Decision Support Framework. Second, we will perform a mixed-methods alpha test of the decision aid prototype with patients and clinicians experienced in acute Achilles tendon ruptures. Outcomes measured will include acceptability and usability of the patient decision aid measured using validated outcome scales and semi-str...
ACME: An International Journal for Critical Geographies, 2016
The lack of research to effectively address inequity within Canadian society is an indicator of t... more The lack of research to effectively address inequity within Canadian society is an indicator of the failure of mainstream research approaches and practices to engage with all populations. The purpose of this paper is to describe the development of a collaborative framework defined by community members and their research partners as ethical, useful and relevant. Two essential phases in negotiating a collaborative framework for a community-research partnership, and the steps in a community based participatory approach are described: 1) establish guiding features of a collaborative framework: i) form an advisory group, ii) develop ethical guidance, iii) agree upon underlying theoretical concepts for the research study, and; 2) engage in research actions that support co-creation of knowledge throughout study processes. The case study example used to illustrate the collaborative framework was conducted by and with a First Nations, Inuit and Metis women’s community and research partners t...
Background Researchers developing personal health tools employ a range of approaches to involve p... more Background Researchers developing personal health tools employ a range of approaches to involve prospective users in design and development. Objective The aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools. Methods We conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis. Results We retained 11 items in a 3-factor stru...
Background When designing and developing patient decision aids, guidelines recommend involving pa... more Background When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. Methods We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. Results We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at le...
Background The objective of this International Patient Decision Aids Standard (IPDAS) review is t... more Background The objective of this International Patient Decision Aids Standard (IPDAS) review is to update and synthesize theoretical and empirical evidence on how balanced information can be presented and measured in patient decision aids (PtDAs). Methods A multidisciplinary team conducted a scoping review using 2 search strategies in multiple electronic databases evaluating the ways investigators defined and measured the balance of information provided about options in PtDAs. The first strategy combined a search informed by the Cochrane Review of the Effectiveness of Decision Aids with a search on balanced information. The second strategy repeated the search published in the 2013 IPDAS update on balanced presentation. Results Of 2450 unique citations reviewed, the full text of 168 articles was screened for eligibility. Sixty-four articles were included in the review, of which 13 provided definitions of balanced presentation, 8 evaluated mechanisms that may introduce bias, and 42 qu...
Background Patients with kidney failure experience a complex decision on dialysis modality perfor... more Background Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients’ knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. Method A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of t...
Background: Rates of contralateral prophylactic mastectomy (CPM) continue to rise internationally... more Background: Rates of contralateral prophylactic mastectomy (CPM) continue to rise internationally despite evidence-based guidance strongly discouraging its use in most women with unilateral breast cancer. The purpose of the present study was to develop and assess the feasibility of a knowledge translation tool [a patient decision aid (DA)] designed to enhance evidence-informed shared decision-making about CPM. Methods: A consultation DA was developed using the Ottawa Patient Decision Aid Development eTraining in consultation with clinicians and knowledge translation experts. The final DA was then assessed for feasibility with health care professionals and patients across Canada. The assessment involved a survey completed online (health care professionals) or by telephone (patients). Survey data were analyzed using descriptive statistics for closed-ended questions and qualitative content analysis for open-ended questions. Results: The 51 participants who completed the survey included...
Conclusions: Publicly available decision aids vary in their use of stories. Most stories focus on... more Conclusions: Publicly available decision aids vary in their use of stories. Most stories focus on the decision and less on the outcome. The balance in their presentation is variable. While most stories portray decisions and outcomes positively, few portray regret or dissatisfaction. Considering the wide public availability of these decision aids, a best practice for the inclusion of personal stories in patient decision aids is needed.
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Papers by Dawn Stacey