, the full, qualitative dataset (i.e., interview transcripts) cannot be made publicly available. ... more , the full, qualitative dataset (i.e., interview transcripts) cannot be made publicly available. This dataset is available upon request to the corresponding author and relevant excerpts from these transcripts are included in the manuscript.
Our objective was to explore parents' experiences of stillbirth using a patient-led qualitative a... more Our objective was to explore parents' experiences of stillbirth using a patient-led qualitative approach, in the Canadian context. Parents who had experienced stillbirth in the previous five years were recruited through posters and snowball sampling. We conducted a co-design focus group to set the direction of our research, narrative interviews, and a reflect focus group to engage parents in finalizing the analysis and findings. Data was analysed iteratively using a participatory approach with grounded theory principles. Our findings highlight that stillbirth is a story of death, but it is also a story of life. Parents (n=11) require the space to experience both the birth and death elements of the story; yet, one or both elements are often silenced. Stillbirth, still life was the core concept that emerged from parents' stories of their stillborn babies. Parents' narratives are driven by the need to honour their babies' lives. They are learning to be unsilenced.
I come to this article as the wife of a stroke survivor, the mother of two children, a veteran me... more I come to this article as the wife of a stroke survivor, the mother of two children, a veteran medical professional, a founder of a website for families dealing with stroke, and a student of communication as the key to identity. After my husband lost the use of the right side of his body and could not speak, he was transferred immediately by ambulance to the hospital. In the emergency department, I was shown the CT scan and was told he had had a nonhemorrhagic stroke. John was admitted into a general medical ward in the hospital under the care of an internal medicine specialist. Two days later, the medical resident came into the room and told me, "The neurologist has just been here, we have done another CT scan and he can talk to you now." I followed him into the corridor, where the neurologist did the entire consultation while dinner trays were being carried to and from rooms by nurses, families were arriving to see their loved ones, nurses scurried to finish their work toward the end of their shift, and numerous curious onlookers listened to the conversation about John's condition. The neurologist very quickly went over information from the CT scan on the brain damage, his prognosis, and his negative prognostications for rehabilitation. I was screaming inside, "This is not communication!" screaming inside, "This is not communication!" This was my first point of contact with a specialist This was my first point of contact with a specialist in stroke care. Providing appropriate and effective information to people with stroke and their families has been identified as a key component of successful practice. 1-3 Patients and families expect health professionals to be the best resource for information, but stroke survivors and especially caregivers consistently state that they require more information. 1-7 Clark 4 and Pound, Gompertz, and Ebrahim 6 found that while patients felt it was the role of doctors and hospitals to provide information, explanations, encouragement, and advice, almost half these patients believed that this need was not being met. Spouses, in particular, felt this way, and they resented having to make specific requests for details. 4 Wellwood, Dennis, and Warlow 8 stated that over 70% of caregivers had to
BackgroundPatient and family engagement in health care has emerged as a critical priority. Unders... more BackgroundPatient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co‐design a patient and family engagement framework.MethodsWorkshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure.ResultsThe framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement.ConclusionThe results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.
BackgroundInflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negativel... more BackgroundInflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research.ObjectivesThis study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process.MethodsTrained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT).ResultsThemes that emerged included: ‘Experimenting with Food’, ‘Evolution Over Time’, ‘Diet Changes are Emotional’ and ‘Role of Stigma’. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients.ConclusionParticipants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food.Patient or Public ContributionThe first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants.
This is an open access article under the terms of the Creative Commons Attribution License, which... more This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
The artwork on the cover of this book is not open access and falls under traditional copyright pr... more The artwork on the cover of this book is not open access and falls under traditional copyright provisions; it cannot be reproduced in any way without written permission of the artists and their agents. The cover can be displayed as a complete cover image for the purposes of publicizing this work, but the artwork cannot be extracted from the context of the cover of this specific work without breaching the artist's copyright.
Engaging patients and families in research and the design of quality improvement is an essential ... more Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS' Strategic Clinical Networks TM. It also describes recent efforts to build AHS' patient and family engagement capacity by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for health leaders.
Not at all important Extremely important 5. Comments 2) 6. If the app could help you to set goals... more Not at all important Extremely important 5. Comments 2) 6. If the app could help you to set goals and follow through, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 7. If the app COULD NOT help you to set goals and follow through, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 8. How important is it for the app to help you to set goals and follow through? Mark only one oval. 10. If the app could help you set a plan with various exercises and track them daily, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 11. If the app COULD NOT help you set a plan with various exercises and track them daily, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 12. How important is it for the app to help you set a plan with various exercises and track them daily? Mark only one oval. 14. If the app could allow you to track your pain symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 15. If the app COULD NOT allow you to track your pain symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 16. How important is it for the app to allow you to track your pain symptoms over time? Mark only one oval. 18. If the app could allow you to track your stiffness symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 19. If the app COULD NOT allow you to track your stiffness symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 20. How important is it for the app to allow you to track your stiffness symptoms over time? Mark only one oval.
<sec> <title>BACKGROUND</title> <p>In previous work, a prototype mobile h... more <sec> <title>BACKGROUND</title> <p>In previous work, a prototype mobile health (mHealth) App was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA).</p> </sec> <sec> <title>OBJECTIVE</title> <p>To evaluate the overall usability, quality, and effectiveness of an mHealth App prototype for aiding knee OA self-management from the perspectives of OA patients and health care providers (HCPs).</p> </sec> <sec> <title>METHODS</title> <p>Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth App prototype co-developed with patients and HCPs. We recruited adult patients aged &gt;20 years with early knee OA (n=18) who experienced knee pain on most days of the month at any time in the past and HCPs (n=7) to participate. In the qualitative assessment, patient and HCPs perspectives were elicited on the likeability and usefulness of App features and functionalities, and the perceived impact of the App on patient-HCP communication. The quantitative assessment involved evaluating the App using usability, quality, and effectiveness metrics. The patient baseline assessments included a semi-structured interview and survey to gather demographics, and to assess quality of life (EQ5D-5L) and patient activation (PAM). Following the 6-week usability trial period, a follow-up survey assessed patients' perceptions of App usability and quality, and longitudinal changes in quality of life and patient activation. Semi-structured interviews and surveys were also conducted with HCPs (n=7) at baseline to evaluate usability and quality of the App prototype.</p> </sec> <sec> <title>RESULTS</title> <p>Interviews with patients and HCPs revealed overall positive impressions of the App prototype features and functionalities relating to likeability and usefulness. Between the baseline and follow-up patient assessments, mean EQ5D-5L scores improved from 0.77 to 0.67 (p=0.04) and PAM scores increased from 80.4 to 87.9 (p=0.01). Following the 6-week evaluation, patients reported a mean system usability scale (SUS) score of 57.8 indicating marginal acceptability according to SUS cut-offs. The mean number of goals set over the usability period 2.47 (SD 3.08) and mean number of activities completed for knee OA self-management over the study period were 22.2 (SD 17.8). Spearman's rank correlation (rs) calculations revealed follow-up PAM scores were weakly correlated (rs = -0.32) with the number of goals achieved and the number (rs=0.19) of activities performed over the 6-week usability period. HCPs reported a mean SUS score of 39.1, indicating unacceptable usability.</p> </sec> <sec> <title>CONCLUSIONS</title> <p>This evidence-based and patient-centered App prototype represents a potential use of mHealth for improving outcomes and enhancing conservative care by promoting patient activation and shared decision-making around OA management. However, the future iterations of the App prototype are required to address shortcomings in usability and quality.</p> </sec>
The Patient: Patient-Centered Outcomes Research, Apr 16, 2016
Objective This study addresses the perspectives of patients with osteoarthritis (OA) about the ga... more Objective This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients. Methods Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study. OA patients (N = 25) participated in a three-step peer-to-peer process: a focus group clarified and explored the topic (''set''), and guided the creation of the interview guide used in the second phase (''collect''). Using a collaborative analysis process, the researchers identified eight concepts that they then brought to a last focus group (''reflect''). Here, participants reviewed the findings, identifying implications for arthritis care in Alberta, Canada. Results An overarching theme of ''supporting us in managing a meaningful life with OA'' was underpinned by three components of quality care: (1) right knowledge-specific and detailed knowledge and information; (2) right professional support-ongoing access to health professionals with OA expertise; and (3) right professional relationship-a partnership with health professionals who help them develop and revise personal self-management plans. Conclusion Peer-to-peer research informed and challenged the research team and stakeholders to consider the need for upstream support for OA patients. Results are helping to transform arthritis care, shifting the health system from an acute episodic model to one that meets the needs of the growing number of patients with chronic diseases.
Unplugging while plugged in a peer to peer exploration of the impacts of dialysis on the mental w... more Unplugging while plugged in a peer to peer exploration of the impacts of dialysis on the mental wellness of patients with chronic kidney disease 3
, the full, qualitative dataset (i.e., interview transcripts) cannot be made publicly available. ... more , the full, qualitative dataset (i.e., interview transcripts) cannot be made publicly available. This dataset is available upon request to the corresponding author and relevant excerpts from these transcripts are included in the manuscript.
Our objective was to explore parents' experiences of stillbirth using a patient-led qualitative a... more Our objective was to explore parents' experiences of stillbirth using a patient-led qualitative approach, in the Canadian context. Parents who had experienced stillbirth in the previous five years were recruited through posters and snowball sampling. We conducted a co-design focus group to set the direction of our research, narrative interviews, and a reflect focus group to engage parents in finalizing the analysis and findings. Data was analysed iteratively using a participatory approach with grounded theory principles. Our findings highlight that stillbirth is a story of death, but it is also a story of life. Parents (n=11) require the space to experience both the birth and death elements of the story; yet, one or both elements are often silenced. Stillbirth, still life was the core concept that emerged from parents' stories of their stillborn babies. Parents' narratives are driven by the need to honour their babies' lives. They are learning to be unsilenced.
I come to this article as the wife of a stroke survivor, the mother of two children, a veteran me... more I come to this article as the wife of a stroke survivor, the mother of two children, a veteran medical professional, a founder of a website for families dealing with stroke, and a student of communication as the key to identity. After my husband lost the use of the right side of his body and could not speak, he was transferred immediately by ambulance to the hospital. In the emergency department, I was shown the CT scan and was told he had had a nonhemorrhagic stroke. John was admitted into a general medical ward in the hospital under the care of an internal medicine specialist. Two days later, the medical resident came into the room and told me, "The neurologist has just been here, we have done another CT scan and he can talk to you now." I followed him into the corridor, where the neurologist did the entire consultation while dinner trays were being carried to and from rooms by nurses, families were arriving to see their loved ones, nurses scurried to finish their work toward the end of their shift, and numerous curious onlookers listened to the conversation about John's condition. The neurologist very quickly went over information from the CT scan on the brain damage, his prognosis, and his negative prognostications for rehabilitation. I was screaming inside, "This is not communication!" screaming inside, "This is not communication!" This was my first point of contact with a specialist This was my first point of contact with a specialist in stroke care. Providing appropriate and effective information to people with stroke and their families has been identified as a key component of successful practice. 1-3 Patients and families expect health professionals to be the best resource for information, but stroke survivors and especially caregivers consistently state that they require more information. 1-7 Clark 4 and Pound, Gompertz, and Ebrahim 6 found that while patients felt it was the role of doctors and hospitals to provide information, explanations, encouragement, and advice, almost half these patients believed that this need was not being met. Spouses, in particular, felt this way, and they resented having to make specific requests for details. 4 Wellwood, Dennis, and Warlow 8 stated that over 70% of caregivers had to
BackgroundPatient and family engagement in health care has emerged as a critical priority. Unders... more BackgroundPatient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co‐design a patient and family engagement framework.MethodsWorkshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure.ResultsThe framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement.ConclusionThe results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.
BackgroundInflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negativel... more BackgroundInflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research.ObjectivesThis study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process.MethodsTrained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT).ResultsThemes that emerged included: ‘Experimenting with Food’, ‘Evolution Over Time’, ‘Diet Changes are Emotional’ and ‘Role of Stigma’. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients.ConclusionParticipants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food.Patient or Public ContributionThe first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants.
This is an open access article under the terms of the Creative Commons Attribution License, which... more This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
The artwork on the cover of this book is not open access and falls under traditional copyright pr... more The artwork on the cover of this book is not open access and falls under traditional copyright provisions; it cannot be reproduced in any way without written permission of the artists and their agents. The cover can be displayed as a complete cover image for the purposes of publicizing this work, but the artwork cannot be extracted from the context of the cover of this specific work without breaching the artist's copyright.
Engaging patients and families in research and the design of quality improvement is an essential ... more Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS' Strategic Clinical Networks TM. It also describes recent efforts to build AHS' patient and family engagement capacity by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for health leaders.
Not at all important Extremely important 5. Comments 2) 6. If the app could help you to set goals... more Not at all important Extremely important 5. Comments 2) 6. If the app could help you to set goals and follow through, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 7. If the app COULD NOT help you to set goals and follow through, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 8. How important is it for the app to help you to set goals and follow through? Mark only one oval. 10. If the app could help you set a plan with various exercises and track them daily, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 11. If the app COULD NOT help you set a plan with various exercises and track them daily, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 12. How important is it for the app to help you set a plan with various exercises and track them daily? Mark only one oval. 14. If the app could allow you to track your pain symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 15. If the app COULD NOT allow you to track your pain symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 16. How important is it for the app to allow you to track your pain symptoms over time? Mark only one oval. 18. If the app could allow you to track your stiffness symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 19. If the app COULD NOT allow you to track your stiffness symptoms over time, how do you feel? Mark only one oval. This would be very helpful to me This is a basic requirement for me This would not affect me This would be a minor inconvenience This would be a major problem for me 20. How important is it for the app to allow you to track your stiffness symptoms over time? Mark only one oval.
<sec> <title>BACKGROUND</title> <p>In previous work, a prototype mobile h... more <sec> <title>BACKGROUND</title> <p>In previous work, a prototype mobile health (mHealth) App was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA).</p> </sec> <sec> <title>OBJECTIVE</title> <p>To evaluate the overall usability, quality, and effectiveness of an mHealth App prototype for aiding knee OA self-management from the perspectives of OA patients and health care providers (HCPs).</p> </sec> <sec> <title>METHODS</title> <p>Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth App prototype co-developed with patients and HCPs. We recruited adult patients aged &gt;20 years with early knee OA (n=18) who experienced knee pain on most days of the month at any time in the past and HCPs (n=7) to participate. In the qualitative assessment, patient and HCPs perspectives were elicited on the likeability and usefulness of App features and functionalities, and the perceived impact of the App on patient-HCP communication. The quantitative assessment involved evaluating the App using usability, quality, and effectiveness metrics. The patient baseline assessments included a semi-structured interview and survey to gather demographics, and to assess quality of life (EQ5D-5L) and patient activation (PAM). Following the 6-week usability trial period, a follow-up survey assessed patients' perceptions of App usability and quality, and longitudinal changes in quality of life and patient activation. Semi-structured interviews and surveys were also conducted with HCPs (n=7) at baseline to evaluate usability and quality of the App prototype.</p> </sec> <sec> <title>RESULTS</title> <p>Interviews with patients and HCPs revealed overall positive impressions of the App prototype features and functionalities relating to likeability and usefulness. Between the baseline and follow-up patient assessments, mean EQ5D-5L scores improved from 0.77 to 0.67 (p=0.04) and PAM scores increased from 80.4 to 87.9 (p=0.01). Following the 6-week evaluation, patients reported a mean system usability scale (SUS) score of 57.8 indicating marginal acceptability according to SUS cut-offs. The mean number of goals set over the usability period 2.47 (SD 3.08) and mean number of activities completed for knee OA self-management over the study period were 22.2 (SD 17.8). Spearman's rank correlation (rs) calculations revealed follow-up PAM scores were weakly correlated (rs = -0.32) with the number of goals achieved and the number (rs=0.19) of activities performed over the 6-week usability period. HCPs reported a mean SUS score of 39.1, indicating unacceptable usability.</p> </sec> <sec> <title>CONCLUSIONS</title> <p>This evidence-based and patient-centered App prototype represents a potential use of mHealth for improving outcomes and enhancing conservative care by promoting patient activation and shared decision-making around OA management. However, the future iterations of the App prototype are required to address shortcomings in usability and quality.</p> </sec>
The Patient: Patient-Centered Outcomes Research, Apr 16, 2016
Objective This study addresses the perspectives of patients with osteoarthritis (OA) about the ga... more Objective This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients. Methods Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study. OA patients (N = 25) participated in a three-step peer-to-peer process: a focus group clarified and explored the topic (''set''), and guided the creation of the interview guide used in the second phase (''collect''). Using a collaborative analysis process, the researchers identified eight concepts that they then brought to a last focus group (''reflect''). Here, participants reviewed the findings, identifying implications for arthritis care in Alberta, Canada. Results An overarching theme of ''supporting us in managing a meaningful life with OA'' was underpinned by three components of quality care: (1) right knowledge-specific and detailed knowledge and information; (2) right professional support-ongoing access to health professionals with OA expertise; and (3) right professional relationship-a partnership with health professionals who help them develop and revise personal self-management plans. Conclusion Peer-to-peer research informed and challenged the research team and stakeholders to consider the need for upstream support for OA patients. Results are helping to transform arthritis care, shifting the health system from an acute episodic model to one that meets the needs of the growing number of patients with chronic diseases.
Unplugging while plugged in a peer to peer exploration of the impacts of dialysis on the mental w... more Unplugging while plugged in a peer to peer exploration of the impacts of dialysis on the mental wellness of patients with chronic kidney disease 3
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