Browsing by Author "Santana, Maria J."

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    A multi-step approach to developing a health system evaluation framework for community-based health care
    (2022-07-09) Ludlow, Natalie C.; de Grood, Jill; Yang, Connie; Murphy, Sydney; Berg, Shannon; Leischner, Rick; McBrien, Kerry A.; Santana, Maria J.; Leslie, Myles; Clement, Fiona; Cepoiu-Martin, Monica; Ghali, William A.; McCaughey, Deirdre
    Abstract Background Community-based health care (CBHC) is a shift towards healthcare integration and community services closer to home. Variation in system approaches harkens the need for a conceptual framework to evaluate outcomes and impacts. We set out to develop a CBHC-specific evaluation framework in the context of a provincial ministry of health planning process in Canada. Methods A multi-step approach was used to develop the CBHC evaluation framework. Modified Delphi informed conceptualization and prioritization of indicators. Formative research identified evaluation framework elements (triple aim, global measures, and impact), health system levels (tiers), and potential CBHC indicators (n = 461). Two Delphi rounds were held. Round 1, panelists independently ranked indicators on CBHC relevance and health system tiering. Results were analyzed by coding agreement/disagreement frequency and central tendency measures. Round 2, a consensus meeting was used to discuss disagreement, identify Tier 1 indicators and concepts, and define indicators not relevant to CBHC (Tier 4). Post-Delphi, indicators and concepts were refined, Tier 1 concepts mapped to the evaluation framework, and indicator narratives developed. Three stakeholder consultations (scientific, government, and public/patient communities) were held for endorsement and recommendation. Results Round 1 Delphi results showed agreement for 300 and disagreement for 161 indicators. Round 2 consensus resulted in 103 top tier indicators (Tier 1 = 19, Tier 2 = 84), 358 bottom Tier 3 and 4 indicators, non-CBHC measure definitions, and eight Tier 1 indicator concepts—Mortality/Suicide; Quality of Life, and Patient Reported Outcome Measures; Global Patient Reported Experience Measures; Cost of Care, Access to Integrated Primary Care; Avoidable Emergency Department Use; Avoidable Hospitalization; and E-health Penetration. Post Delphi results refined Tier 3 (n = 289) and 4 (n = 69) indicators, and identified 18 Tier 2 and 3 concepts. When mapped to the evaluation framework, Tier 1 concepts showed full coverage across the elements. ‘Indicator narratives’ depicted systemness and integration for evaluating CBHC. Stakeholder consultations affirmed endorsement of the approach and evaluation framework; refined concepts; and provided key considerations to further operationalize and contextualize indicators, and evaluate CBHC as a health system approach. Conclusions This research produced a novel evaluation framework to conceptualize and evaluate CBHC initiatives. The evaluation framework revealed the importance of a health system approach for evaluating CBHC.
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    A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system
    (2024-07-15) McCabe, Erin; Dyson, Michele; McNeil, Deborah; Hindmarch, Whitney; Ortega, Iliana; Arnold, Paul D.; Dimitropoulos, Gina; Clements, Ryan; Santana, Maria J.; Zwicker, Jennifer D.
    Abstract Background Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care. Methods This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre’s services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals’ experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre’s operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres’ population. Discussion The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.
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    APPROACH e-PROM system: a user-centered development and evaluation of an electronic patient-reported outcomes measurement system for management of coronary artery disease
    (2024-08-28) Roberts, Andrew; Benterud, Eleanor; Santana, Maria J.; Engbers, Jordan; Lorenz, Christine; Verdin, Nancy; Pearson, Winnie; Edgar, Peter; Adekanye, Joel; Javaheri, Pantea; MacDonald, Courtney E.; Simmons, Sarah; Zelinsky, Sandra; Caird, Jeff; Sawatzky, Rick; Har, Bryan; Ghali, William A.; Norris, Colleen M.; Graham, Michelle M.; James, Matthew T.; Wilton, Stephen B.; Sajobi, Tolulope T.
    Abstract Background Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential to inform routine cardiac care and to improve quality of care and patient outcomes. This study describes a user-centered development and evaluation of the Alberta Provincial Project for Outcomes Assessment (APPROACH) electronic Patient Reported Outcomes Measurement (e-PROM) system. This e-PROM system is an electronic system for the administration of PROMs to patients with CAD and the delivery of the summarized information to their care providers to facilitate patient-physician communication and shared decision-making. This electronic platform was designed to be accessible via web-based and hand-held devices. Heuristic and user acceptance evaluation were conducted with patients and attending care providers. Results The APPROACH e-PROM system was co-developed with patients and care providers, research investigators, informaticians and information technology experts. Five PROMs were selected for inclusion in the online platform after consultations with patient partners, care providers, and PROMs experts: the Seattle Angina Questionnaire, Patient Health Questionnaire, EuroQOL, and Medical Outcomes Study Social Support Survey, and Self-Care of Coronary Heart Disease Inventory. The heuristic evaluation was completed by four design experts who examined the usability of the prototype interfaces. User acceptance testing was completed with 13 patients and 10 cardiologists who evaluated prototype user interfaces of the e-PROM system. Conclusion Both patients and physicians found the APPROACH e-PROM system to be easy to use, understandable, and acceptable. The APPROACH e-PROM system provides a user-informed electronic platform designed to incorporate PROMs into the delivery of individualized cardiac care for persons with CAD.
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    Assessing the Experiences of Immigrants Receiving Primary Care during COVID-19: A mixed-methods study
    (2022-01) Bajgain, Bishnu; Santana, Maria J.; Aghajafari, Fariba; Jackson, Jeanette
    Background: The entire healthcare system, including primary healthcare (PHC) services, has been disrupted since the onset of the COVID-19 pandemic. As the crisis threatens all citizens significantly, further barriers to accessing care exist for those who are most vulnerable, experience marginalization, and have pre-existing challenges. We aimed to explore immigrants’ lived experiences in accessing and receiving PHC services during the pandemic. Methods: A multiphase mixed-methods study using a sequential explanatory design was employed. The first study includes a systematic review that synthesizes the evidence on the experiences that immigrant patients have receiving PHC. Study two provides insights from a recently employed “COVID-19 Experiences and Impacts Survey” data and compares the experiences of Albertans that were born in and outside Canada. Descriptive statistics and multivariable logistic regression were performed, using STATA. The third study is a qualitative inquiry that aims to gain a deeper understanding of the newcomers’ (living in Canada ≤5 years) and providers’ experiences in PHC during the pandemic. A thematic analysis was applied, using NVivo software. Results: The literature review revealed four major concerns affecting healthcare experiences of immigrant patients: 1) cultural and linguistic difference; 2) socioeconomic challenges; 3) health system factors; and 4) patient-provider relationship. The quantitative analysis of survey data (N=10,175) showed Canadian-born respondents were more likely to report worsening mental health during the pandemic, as well as higher levels of perceived stress, anxiety, or depression compared to non-Canadian-born survey respondents. In addition, Canadian-born respondents were more likely to prefer virtual healthcare compared to those respondents born outside Canada. Both cohorts reported that delayed care during the pandemic negatively impacted their health, and similar percentages in each cohort reported hesitancy getting the COVID-19 Vaccine. The qualitative inquiry included 23 interviews (15 newcomers, 8 providers) and revealed three aspects driving newcomers’ and healthcare providers’ experiences: overall experiences (doctor-patient relationship, care coordination, expectation on care), virtual care experience (accessibility, communication), challenges in accessing and receiving healthcare (language/cultural difference, care accessibility, health system literacy, competing priorities). Conclusion: This thesis presents a comprehensive exploration and description of immigrants’ lived experiences in accessing and receiving PHC during the pandemic. Immigrants reported many challenges in accessing and receiving PHC, and these challenges have been increased since the COVID-19 pandemic. The results of this thesis yielded six recommendations that can inform PHC quality improvement initiatives and PHC policy.
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    Co-designing person-centred quality indicator implementation for primary care in Alberta: a consensus study
    (2022-11-08) Manalili, Kimberly; Scott, Catherine M.; Hemmelgarn, Brenda; O’Beirne, Maeve; Bailey, Allan L.; Haener, Michel K.; Banerjee, Cyrene; Peters, Sue P.; Chiodo, Mirella; Aghajafari, Fariba; Santana, Maria J.
    Abstract Background We aimed to contribute to developing practical guidance for implementing person-centred quality indicators (PC-QIs) for primary care in Alberta, Canada. As a first step in this process, we conducted stakeholder-guided prioritization of PC-QIs and implementation strategies. Stakeholder engagement is necessary to ensure PC-QI implementation is adapted to the context and local needs. Methods We used an adapted nominal group technique (NGT) consensus process. Panelists were presented with 26 PC-QIs, and implementation strategies. Both PC-QIs and strategies were identified from our extensive previous engagement of patients, caregivers, healthcare providers, and quality improvement leaders. The NGT objectives were to: 1. Prioritize PC-QIs and implementation strategies; and 2. Facilitate the participation of diverse primary care stakeholders in Alberta, including patients, healthcare providers, and quality improvement staff. Panelists participated in three rounds of activities. In the first, panelists individually ranked and commented on the PC-QIs and strategies. The summarized results were discussed in the second-round face-to-face group meeting. For the last round, panelists provided their final individual rankings, informed by the group discussion. Finally, we conducted an evaluation of the consensus process from the panelists’ perspectives. Results Eleven primary care providers, patient partners, and quality improvement staff from across Alberta participated. The panelists prioritized the following PC-QIs: ‘Patient and caregiver involvement in decisions about their care and treatment’; ‘Trusting relationship with healthcare provider’; ‘Health information technology to support person-centred care’; ‘Co-designing care in partnership with communities’; and ‘Overall experience’. Implementation strategies prioritized included: ‘Develop partnerships’; ‘Obtain quality improvement resources’; ‘Needs assessment (stakeholders are engaged about their needs/priorities for person-centred measurement)’; ‘Align measurement efforts’; and ‘Engage champions’. Our evaluation suggests that panelists felt that the process was valuable for planning the implementation and obtaining feedback, that their input was valued, and that most would continue to collaborate with other stakeholders to implement the PC-QIs. Conclusions Our study demonstrates the value of co-design and participatory approaches for engaging stakeholders in adapting PC-QI implementation for the primary care context in Alberta, Canada. Collaboration with stakeholders can promote buy-in for ongoing engagement and ensure implementation will lead to meaningful improvements that matter to patients and providers.
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    Factors affecting implementation of patient-reported outcome and experience measures in a pediatric health system
    (2023-03-09) McCabe, Erin; Rabi, Sarah; Bele, Sumedh; Zwicker, Jennifer D.; Santana, Maria J.
    Abstract Background The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families’ perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of implementation The purpose of this study is to describe the barriers and facilitators to PROMs and PREMs implementation and to recommend strategies for implementing these measures in a pediatric health system. Methods We used a qualitative descriptive approach to analyse data from interviews to understand the experiences of PROMs and PREMs users across different pediatric settings in a single Canadian healthcare system. Results There were 23 participants representing a variety of roles within the healthcare system and pediatric populations. We found five main factors that affected implementation of PROMs and PREMs in pediatric settings: 1) Characteristics of PROMs and PREMs; 2) Individual’s beliefs; 3) Administering PROMs and PREMs; 4) Designing clinical workflows; and 5) Incentives for using PROMs and PREMs. Thirteen recommendations for integrating PROMs and PREMs in pediatric health settings are provided. Conclusions Implementing and sustaining the use of PROMs and PREMs in pediatric health settings presents several challenges. The information presented will be useful for individuals who are planning or evaluating the implementation of PROMs and PREMs in pediatric settings.
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    Health related quality of life during dialysis modality transitions: a qualitative study
    (2023-09-22) Dumaine, Chance S.; Fox, Danielle E.; Ravani, Pietro; Santana, Maria J.; MacRae, Jennifer M.
    Abstract Background Modality transitions represent a period of significant change that can impact health related quality of life (HRQoL). We explored the HRQoL of adults transitioning to new or different dialysis modalities. Methods We recruited eligible adults (≥ 18) transitioning to dialysis from pre-dialysis or undertaking a dialysis modality change between July and September 2017. Nineteen participants (9 incident and 10 prevalent dialysis patients) completed the KDQOL-36 survey at time of transition and three months later. Fifteen participants undertook a semi-structured interview at three months. Qualitative data were thematically analyzed. Results Four themes and five sub-themes were identified: adapting to new circumstances (tackling change, accepting change), adjusting together, trading off, and challenges of chronicity (the impact of dialysis, living with a complex disease, planning with uncertainty). From the first day of dialysis treatment to the third month on a new dialysis therapy, all five HRQoL domains from the KDQOL-36 (symptoms, effects, burden, overall PCS, and overall MCS) improved in our sample (i.e., those who remained on the modality). Conclusions Dialysis transitions negatively impact the HRQoL of people with kidney disease in various ways. Future work should focus on how to best support people during this time.
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    Patient-identified priorities for successful partnerships in patient-oriented research
    (2022-09-07) Santana, Maria J.; Duquette, D’Arcy; Fairie, Paul; Nielssen, Ingrid; Bele, Sumedh; Ahmed, Sadia; Barbosa, Tiffany; Zelinsky, Sandra
    Abstract Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national strategy for patient-oriented research (SPOR) patient engagement framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR’s key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members.
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    Patient-reported experiences and outcomes of virtual care during COVID-19: a systematic review
    (2023-12-01) Bajgain, Bishnu; Rabi, Sarah; Ahmed, Sadia; Kiryanova, Veronika; Fairie, Paul; Santana, Maria J.
    Abstract Introduction The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care quality from the patient's perspective. This poses challenges to ensuring that patient-centered care is upheld within virtual environments. To address this, the study’s objective was to review how virtual care has impacted patient experiences and outcomes during COVID-19, through the use of patient-reported experience and outcome measures (PREMs and PROMs), respectively. Methods A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines to evaluate patient responsiveness to virtual care during COVID-19. Using an exhaustive search strategy, relevant peer-reviewed articles published between January 2020 and 2022 were pulled from MEDLINE, CINAHL, EMBASE, and PsychInfo databases. Study quality was independently assessed by two reviewers using the Mixed Methods Appraisal Tool. A patient partner was consulted throughout the study to provide feedback and co-conduct the review. Results After removing duplicates, 6048 articles underwent title and abstract review, from which 644 studies were included in the full-text review stage. Following this, 102 articles were included in the study. Studies were published in 20 different countries, were predominantly cross-sectional, and reported on the delivery of virtual care in specialized adult outpatient settings. This review identified 29 validated PREMs and 43 PROMs. Several advantages to virtual care were identified, with patients citing greater convenience, (such as saving travel time and cost, less waiting experienced to see care providers) and increased protection from viral spread. Some studies also reported challenges patients and caregivers faced with virtual care, including feeling rushed during the virtual care appointment, lack of physical contact or examination presenting barriers, difficulty with communicating symptoms, and technology issues. Conclusion This review provides supportive evidence of virtual care experiences during the COVID-19 pandemic from patient and caregiver perspectives. This research provides a comprehensive overview of what patient-reported measures can be used to record virtual care quality amid and following the pandemic. Further research into healthcare professionals’ perspectives would offer a supportive lens toward a strong person-centered healthcare system.
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    Patient-reported outcome measures in pediatric asthma care: using theoretical domains framework to explore healthcare providers’ perceptions
    (2022-08-19) Bele, Sumedh; Rabi, Sarah; Zhang, Muning; Oddone Paolucci, Elizabeth; Johnson, David W.; Quan, Hude; Santana, Maria J.
    Abstract Background Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care. Implementing interventions like PROMs in routine clinical care require key stakeholders to change their behavior. The aim of this study was to utilize the Theoretical Domains Framework (TDF) to identify barriers and enablers to the implementation of PROMs in pediatric outpatient asthma clinics from healthcare providers’ perspective. Methods This TDF-guided qualitative descriptive study is part of a larger multi-phase project to develop the KidsPRO program, an electronic platform to administer, collect, and use PROMs in pediatrics. Semi-structured qualitative interviews were conducted with 17 participants, which included pediatricians, nurses, allied health professionals and administrative staff from outpatient asthma clinics. All the interviews were transcribed, deductively coded, inductively grouped in themes, and categorized into barriers and enablers. Results We identified 33 themes within 14 TDF domains, which were further categorized and tabulated into 16 barriers and 17 enablers to implementing PROMs in asthma clinics. Barriers to behavioral change were attributed to personal, clinical, non-clinical, and other system-level factors; they ranged from limited awareness of PROMs to language barriers and patient’s complex family background. Enablers ranged from a personal commitment to providing patient and family-centered care to administering PROMs electronically. Conclusion This implementation of science-based systematic inquiry captured the complexity of PROMs implementation in pediatric outpatient clinical care for asthma. Considering the consistency in barriers and enablers to implementing PROMs across patient populations and care settings, many findings of this study will be directly applicable to other pediatric healthcare settings.
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    Pediatric patient engagement in clinical care, research and intervention development: a scoping review
    (2023-03-29) Teela, Lorynn; Verhagen, Lieke E.; van Oers, Hedy A.; Kramer, Esmée E. W.; Daams, Joost G.; Gruppen, Mariken P.; Santana, Maria J.; Grootenhuis, Martha A.; Haverman, Lotte
    Abstract Background In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement. Methods The methodological framework of Arksey & O’Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated. Results A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age. Discussion This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects.
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    The Seamless Transfer-of-Care Protocol: a randomized controlled trial assessing the efficacy of an electronic transfer-of-care communication tool
    (BioMed Central, 2012-11-21) Okoniewska, Barbara M.; Santana, Maria J.; Holroyd-Leduc, Jayna M.; Flemons, W. Ward; O'Beirne, Maeve; White, Deborah; Clement, Fiona M.; Forster, Alan; Ghali, William A.
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    Uptake of pediatric patient-reported outcome and experience measures and challenges associated with their implementation in Alberta: a mixed-methods study
    (2023-07-18) Bele, Sumedh; Rabi, Sarah; Zhang, Muning; Ahmed, Sadia; Paolucci, Elizabeth O.; Johnson, David W.; Quan, Hude; Santana, Maria J.
    Abstract Background Implementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatric healthcare system. This study addresses this gap by investigating the current uptake, barriers, and enablers for integrating PROMs and PREMs in Alberta's pediatric healthcare system. Methods Pediatric clinicians and academic researchers with experience using PROMs and PREMs were invited to complete a quantitative survey. Additionally, key stakeholders were qualitatively interviewed to understand current challenges in implementing pediatric PROMs and PREMs within AHS. Quantitative data gathered from 22 participants were descriptively analyzed, and qualitative data from 14 participants were thematically analyzed. Results Participants identified 33 PROMs and 6 PREMs showing diversity in the types of pediatric PROMs and PREMs currently being used in Alberta and their mode of administration. The qualitatively identified challenges were associated with patients, family caregivers, and clinicians. The absence of system-level support, such as integration within electronic medical records, is considered a significant system-level challenge. Conclusions The significant variation in the types of PROMs and PREMs used, the rationale for their use, and their mode of administration demonstrate the diverse and sporadic use of these measures in Alberta. These findings highlight the need for province-wide uniform implementation of pediatric PROMs and PREMs in Alberta. Our results could benefit healthcare organizations in developing evidence-based PROM and PREM implementation strategies in pediatrics.
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    Variation in parental experiences with their child’s hospitalization over the COVID-19 pandemic
    (2023-11-10) Kemp, Kyle A.; Fairie, Paul; Steele, Brian; Santana, Maria J.
    Abstract Background Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim was to examine how parental experiences with their child’s hospitalization varied during the COVID-19 pandemic at two children’s hospitals in Alberta, Canada. Methods A random sample of parents were surveyed within six weeks of their child’s discharge from Alberta’s two children’s hospitals. Surveys were administered using the Alberta Pediatric Inpatient Experiences Survey (APIES) - a validated instrument used to assess parental experiences during their child’s hospitalization. Surveys were linked with administrative inpatient records. Three cohorts were created based on hospital discharge date: Pre-COVID (Pre: April 2019 to March 2020), COVID year one (C1: April 2020 to March 2021), and COVID year two (C2: April 2021 to March 2022). We examined 48 survey questions, including four overall rating scales. Survey responses were Likert scales. These were transformed to normalized scores from 0 (worst) to 100 (best). Differences between cohorts were assessed using ANOVA and the post-hoc Tukey test. Results A total of 3,611 surveys (1,314 Pre; 997 C1; 1,300 C2) were completed over the three-year period. Five questions showed differences between the Pre and C1 periods, six showed differences between Pre and C2, and 13 showed differences between C1 and C2. Among these questions, scores pre-COVID were lower than COVID year one, while results in COVID year two were lower than pre-COVID and COVID year one. Thirty-one survey questions showed no statistical differences between the three time periods. For the overall ratings, only hospital rating showed a difference in any of the periods (91.4 C1 vs. 90.2 C2). Overall ratings of doctors, nurses, and recommendation of the hospital to others showed no differences. Conclusion This study showed that the experiences of parents during the first year of the COVID-19 pandemic were mildly better or comparable to historical results. This changed over the following year, where lower scores were reported on 13 questions.
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    Working together in health research: a mixed-methods patient engagement evaluation
    (2023-08-01) Babatunde, Stella; Ahmed, Sadia; Santana, Maria J.; Nielssen, Ingrid; Zelinsky, Sandra; Ambasta, Anshula
    Abstract Background In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. Methods The RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo. Results A total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study. Conclusions Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward.