Browsing by Author "Sinnarajah, Aynharan"

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    Acceptability 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, Aynharan
    Abstract 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.
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    Comparing the physical, psychological, social, and spiritual needs of patients with non-cancer and cancer diagnoses in a tertiary palliative care setting
    (2019-11-27) Bandeali, Suhair; des Ordons, Amanda Roze; Sinnarajah, Aynharan
    OBJECTIVE: The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer. METHOD: We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis: •Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium•Psychological: depression, anxiety, prognosis, and dignity•Social: caregiver burden, isolation, and financial•Spiritual: spiritual distress. RESULTS: The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer. SIGNIFICANCE OF RESULTS: The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses.
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    Description of Continuous Palliative Sedation Practices in a Large Health Region and Comparison with Clinical Practice Guidelines
    (2019-09-03) Abdul-Razzak, Amane; Lemieux, Laurie; Snyman, Maggie; Perez, Grace; Sinnarajah, Aynharan
    Background: Published reports of continuous palliative sedation therapy (CPST) suggest heterogeneity in practice. There is a paucity of reports that compare practice with clinical guidelines. Objectives: To assess adherence of continuous palliative sedation practices with criteria set forth in local clinical guidelines, and to describe other features including prevalence, medication dosing, duration, multidisciplinary team involvement, and concurrent therapies. Design: Retrospective chart review. Settings/Subjects: We included cases in which a midazolam infusion was ordered at the end of life. Study sites included four adult hospitals in the Calgary health region, two hospices, and a tertiary palliative care unit. Measurements: Descriptive data, including proportion of deaths involving palliative sedation therapy, number of criteria documented, midazolam dose/duration, concurrent symptom management therapies, and referrals to spiritual care, psychology, or social work. Results: CPST occurred in 602 out of 14,360 deaths (4.2%). Full adherence to criteria occurred in 7% of cases. The most commonly missed criteria were: a "C2" goals-of-care designation order (comfort care focus in the imminently dying) (84%) and documentation of imminent death in the chart (55%). Concurrent medical therapies included opioids in 98% of cases and intravenous hydration in 85% of cases. Few referrals were made to multidisciplinary care teams. Conclusions: We found low adherence to palliative sedation guidelines. This may reflect the perception that some criteria are redundant or clinically unimportant. Future work could include a study of barriers to guideline uptake, and guideline modification to provide direction on concurrent therapies and multidisciplinary team involvement.
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    Increasing 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, Iqmat
    Abstract 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.
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    Multi-disciplinary supportive end of life care in long-term care: an integrative approach to improving end of life
    (2021-05-22) Harasym, Patricia M.; Afzaal, Misha; Brisbin, Sarah; Sinnarajah, Aynharan; Venturato, Lorraine; Quail, Patrick; Kaasalainen, Sharon; Straus, Sharon; Sussman, Tamara; Virk, Navjot; Holroyd-Leduc, Jayna M.
    Abstract Background Optimal supportive end of life care for frail, older adults in long term care (LTC) homes involves symptom management, family participation, advance care plans, and organizational support. This 2-phase study aimed to combine multi-disciplinary opinions, build group consensus, and identify the top interventions needed to develop a supportive end of life care strategy for LTC. Methods A consensus-building approach was undertaken in 2 Phases. The first phase deployed modified Delphi questionnaires to address and transform diverse opinions into group consensus. The second phase explored and prioritized the interventions needed to develop a supportive end of life care strategy for LTC. Development of the Delphi questionnaire was based on findings from published results of physician perspectives of barriers and facilitators to optimal supportive end of life care in LTC, a literature search of palliative care models in LTC, and published results of patient, family and nursing perspectives of supportive end of life care in long term care. The second phase involved World Café Style workshop discussions. A multi-disciplinary purposive sample of individuals inclusive of physicians; staff, administrators, residents, family members, and content experts in palliative care, and researchers in geriatrics and gerontology participated in round one of the modified Delphi questionnaire. A second purposive sample derived from round one participants completed the second round of the modified Delphi questionnaire. A third purposive sample (including participants from the Delphi panel) then convened to identify the top priorities needed to develop a supportive end-of-life care strategy for LTC. Results 19 participants rated 75 statements on a 9-point Likert scale during the first round of the modified Delphi questionnaire. 11 participants (participation rate 58 %) completed the second round of the modified Delphi questionnaire and reached consensus on the inclusion of 71candidate statements. 35 multidisciplinary participants discussed the 71 statements remaining and prioritized the top clinical practice, communication, and policy interventions needed to develop a supportive end of life strategy for LTC. Conclusions Multi-disciplinary stakeholders identified and prioritized the top interventions needed to develop a 5-point supportive end of life care strategy for LTC.
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    Patient 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.
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    What are healthcare providers' understandings and experiences of compassion? The healthcare compassion model: a grounded theory study of healthcare providers in Canada
    (British Medical Journal, 2018-03-14) Sinclair, Shane; Hack, Thomas F; Raffin-Bouchal, Shelley; McClement, Susan; Stajduhar, Kelli; Singh, Pavneet; Hagen, Neil A; Sinnarajah, Aynharan; Chochinov, Harvey Max
    Background Healthcare providers are considered the primary conduit of compassion in healthcare. Although most healthcare providers desire to provide compassion, and patients and families expect to receive it, an evidence-based understanding of the construct and its associated dimensions from the perspective of healthcare providers is needed. Objectives The aim of this study was to investigate healthcare providers’ perspectives and experiences of compassion in order to generate an empirically derived, clinically informed model. Design Data were collected via focus groups with frontline healthcare providers and interviews with peer-nominated exemplary compassionate healthcare providers. Data were independently and collectively analysed by the research team in accordance with Straussian grounded theory. Setting and participants 57 healthcare providers were recruited from urban and rural palliative care services spanning hospice, home care, hospital-based consult teams, and a dedicated inpatient unit within Alberta, Canada. Results Five categories and 13 associated themes were identified, illustrated in the Healthcare Provider Compassion Model depicting the dimensions of compassion and their relationship to one another. Compassion was conceptualised as—a virtuous and intentional response to know a person, to discern their needs and ameliorate their suffering through relational understanding and action. Conclusions An empirical foundation of healthcare providers’ perspectives on providing compassionate care was generated. While the dimensions of the Healthcare Provider Compassion Model were congruent with the previously developed Patient Model, further insight into compassion is now evident. The Healthcare Provider Compassion Model provides a model to guide clinical practice and research focused on developing interventions, measures and resources to improve it.