Browsing by Author "Ahmed, Sadia"
Now showing 1 - 7 of 7
Results Per Page
Sort Options
- ItemOpen AccessAcceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process(2024-04-02) Ahmed, Sadia; Simon, Jessica; Biondo, Patricia; Slobogian, Vanessa; Shirt, Lisa; King, Seema; Paolucci, Alessandra; Pabani, Aliyah; Hao, Desiree; Bossio, Emi; Cross, Ralph; Monds, Tim; Nieuwenhuis, Jane; Sinnarajah, AynharanAbstract Purpose Timely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-design with patients and providers an automatic PC referral process for patients newly diagnosed with stage IV lung cancer. Methods In Step 1 of this work, nine one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a working group to provide input on the development and implementation of the automatic referral process. The group met biweekly (virtually) over the course of six months. Results From interviews, the concept of an automatic referral process was perceived to be acceptable and beneficial for patients. Participants emphasized the need for timely support, access to peer and community resources. Using these findings, the co-design working group identified eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, handouts on supportive care, and interview and survey guides for evaluating the implemented automatic process. Conclusion A co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients.
- ItemOpen AccessIncreasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol(2023-12-20) Santos Salas, Anna; Watanabe, Sharon M.; Sinnarajah, Aynharan; Bassah, Nahyeni; Huang, Fleur; Turner, Jill; Alcalde Castro, Jacqueline; O’Rourke, Hannah M.; Camargo-Plazas, Pilar; Salami, Bukola; Santana, María; Campbell, Katy; Abdel-Rahman, Omar; Wildeman, Tracy; Vaughn, Lisa; Judge, Harkeert; Ahmed, Sadia; Adewale, Bisi; Iyiola, IqmatAbstract Background Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. Methods This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants’ experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. Discussion This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.
- ItemOpen AccessPatient and Caregiver Experiences Living with Advanced Colorectal Cancer & Receiving Early Palliative Care in Alberta(2020-07-28) Ahmed, Sadia; Santana, Maria Jose; Sinnarajah, Aynharan; McGhan, Gwen E.Background: Palliative care is patient-centred care that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In Alberta, most people who received palliative care received it late, impacting their quality of life. An early palliative care pathway that incorporates patient and caregiver experiences is needed to ensure that priorities of patients living with advanced cancer care are at the forefront of quality care. Overall aim: This study aims to understand patient and caregiver experiences of advanced colorectal cancer care and receiving early palliative care to inform development and refinement of an early palliative care pathway for patients with advanced colorectal cancer. Methods: This is a qualitative study that is embedded within a larger program of research on the implementation of the Palliative Care Early and Systematic (PaCES- a province-wide project aimed at developing and delivering an early and systematic palliative care pathway for advanced colorectal cancer patients and their caregivers in Alberta) intervention. We conducted telephone interviews with patients living with advanced colorectal cancer and family caregivers to understand their experiences before implementing the early palliative care pathway (standard cancer care) and after the implementation of the palliative care pathway. Patients and caregivers were recruited with the help of clinician-research team members in Calgary and Edmonton. Data was thematically analyzed using deductive, inductive, and iterative coding strategies. Findings: Gaps in standard oncology care included poor care coordination, misunderstanding of palliative care, confusion regarding role of family physician, and lack of advance care planning discussions. Four main themes shaped participants’ experience of early palliative care: care coordination, perception of palliative care, coping with advanced cancer, and patient and family engagement. Main differences before and after implementation of the care pathway were in care coordination and communication with and among healthcare providers, understanding of palliative care, involvement of the family physician, and advance care planning discussions. Conclusions: Early palliative care delivered by a specialist palliative care nurse can improve advanced cancer care. The early palliative care pathway seeks to implement a standardized pathway that can be implemented across Alberta (including urban and rural settings), to guide routine advanced cancer care.
- ItemOpen AccessPatient-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, SandraAbstract 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.
- ItemOpen AccessPatient-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.
- ItemOpen AccessUptake 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.
- ItemOpen AccessWorking 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, AnshulaAbstract 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.