This synthesis suggests that those developing and implementing peer support interventions need to be sensitive to their potential negative effects. They will need to manage the tension between the hierarchical and egalitarian aspects of peer support interventions, and consider the impact on both mentors and mentees.
BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers’ perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients’ roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.
ObjectivesTo examine the feasibility and potential benefits of early peer support to improve the health and quality of life of individuals with early inflammatory arthritis (EIA).DesignFeasibility study using the 2008 Medical Research Council framework as a theoretical basis. A literature review, environmental scan, and interviews with patients, families and healthcare providers guided the development of peer mentor training sessions and a peer-to-peer mentoring programme. Peer mentors were trained and paired with a mentee to receive (face-to-face or telephone) support over 12 weeks.SettingTwo academic teaching hospitals in Toronto, Ontario, Canada.ParticipantsNine pairs consisting of one peer mentor and one mentee were matched based on factors such as age and work status.Primary outcome measureMentee outcomes of disease modifying antirheumatic drugs (DMARDs)/biological treatment use, self-efficacy, self-management, health-related quality of life, anxiety, coping efficacy, social support and disease activity were measured using validated tools. Descriptive statistics and effect sizes were calculated to determine clinically important (>0.3) changes. Peer mentor self-efficacy was assessed using a self-efficacy scale. Interviews conducted with participants examined acceptability and feasibility of procedures and outcome measures, as well as perspectives on the value of peer support for individuals with EIA. Themes were identified through constant comparison.ResultsMentees experienced improvements in the overall arthritis impact on life, coping efficacy and social support (effect size >0.3). Mentees also perceived emotional, informational, appraisal and instrumental support. Mentors also reported benefits and learnt from mentees’ fortitude and self-management skills. The training was well received by mentors. Their self-efficacy increased significantly after training completion. Participants’ experience of peer support was informed by the unique relationship with their peer. All participants were unequivocal about the need for peer support for individuals with EIA.ConclusionsThe intervention was well received. Training, peer support programme and outcome measures were demonstrated to be feasible with modifications. Early peer support may augment current rheumatological care.Trial registration numberNCT01054963, NCT01054131.
ObjectiveThe need for clinical staff to reliably identify patients with a shortened life expectancy is an obstacle to improving palliative and end-of-life care. We developed and evaluated the feasibility of an automated tool to identify patients with a high risk of death in the next year to prompt treating physicians to consider a palliative approach and reduce the identification burden faced by clinical staff.MethodsTwo-phase feasibility study conducted at two quaternary healthcare facilities in Toronto, Canada. We modified the Hospitalised-patient One-year Mortality Risk (HOMR) score, which identifies patients having an elevated 1-year mortality risk, to use only data available at the time of admission. An application prompted the admitting team when patients had an elevated mortality risk and suggested a palliative approach. The incidences of goals of care discussions and/or palliative care consultation were abstracted from medical records.ResultsOur model (C-statistic=0.89) was found to be similarly accurate to the original HOMR score and identified 15.8% and 12.2% of admitted patients at Sites 1 and 2, respectively. Of 400 patients included, the most common indications for admission included a frailty condition (219, 55%), chronic organ failure (91, 23%) and cancer (78, 20%). At Site 1 (integrated notification), patients with the notification were significantly more likely to have a discussion about goals of care and/or palliative care consultation (35% vs 20%, p = 0.016). At Site 2 (electronic mail), there was no significant difference (45% vs 53%, p = 0.322).ConclusionsOur application is an accurate, feasible and timely identification tool for patients at elevated risk of death in the next year and may be effective for improving palliative and end-of-life care.
Policy Points Policymakers interested in advancing integrated models of care may benefit from understanding how integration itself is generated. Integration is analyzed as the generation of connectivity and consensus—the coming together of people, practices, and things.Integration was mediated by chosen program structures and generated by establishing partnerships, building trust, developing thoughtful models, engaging clinicians in strategies, and sharing data across systems.This study provides examples of on‐the‐ground integration strategies in 6 programs, suggests contexts that better lend themselves to integration initiatives, and demonstrates how programs may be examined for the very thing they seek to implement—integration itself. ContextBy bundling services and encouraging interprofessional and interorganizational collaboration, integrated health care models counter fragmented health care delivery and rising system costs. Building on a policy impetus toward integration, the Ministry of Health and Long‐Term Care in the Canadian province of Ontario chose 6 programs, each comprising multiple hospital and community partners, to implement bundled care, also referred to as integrated‐funding models. While research has been conducted on the facilitators and challenges of integration, there is less known about how integration is generated. This article explores the generation of integration through the dynamic interplay of contexts and mechanisms and of structures and subjects.MethodsFor this qualitative study, we conducted 48 interviews with program stakeholders, from organization leaders and managers to physicians and integrated care coordinators, across the hospital‐community spectrum. We then used content analysis to explore the extent to which themes were shared across programs and to identify idiosyncrasies, followed by a realist evaluation approach to understand how integration was produced in structural and everyday ways in local program contexts.FindingsIntegration was generated through the successful production of connectivity and consensus—the coming together of people, practice, and things, as perceived and experienced by stakeholders. When able, the programs harnessed existing cultures of clinician engagement, and leveraged established partnerships. However, integration could be achieved even without these histories, by building trust, developing thoughtful models, using clinicians’ existing engagement strategies, and implementing shared systems and technologies. The programs’ structures (from their scale to their chosen patient population) also contextualized and mediated integration.ConclusionsThis article has both practical and theoretical implications. It provides transferable insights into the strategies by which integration is generated. It also contributes conceptually to realist approaches to evaluation by advancing an understanding of mechanisms as contextually and temporally contingent, with the capacity to produce new contexts, which in turn generate new sets of mechanisms.
PurposePatients’ values are a key component of patient-centered care and shared decision making in health care organizations. There is limited understanding on how patients’ values guide their health related decision making or how patients understand the concept of values during these processes. This study investigated patients’ understanding of their values in the context of considering the risks/benefits of receiving an implantable cardioverter-defibrillator (ICD).Patients and methodsA qualitative substudy was conducted within a feasibility trial with first-time ICD candidates randomized to receive a patient decision aid or usual care prior to specialist consultation. Semi-structured interviews were conducted with participants post-implantation or post-specialist consultation.ResultsSixteen patients (ten male) aged 47–87 years participated. Of these, ten (62.5%) received the patient decision aid prior to specialist consultation. Findings revealed patients were confused by the word “values” and had difficulty expressing values related to risks/benefits during ICD decision making. When probed, values were conceptualized broadly capturing other factors such as desire to live, good quality of life, family’s views, ICD information, control over decision, and medical authority.ConclusionThis study revealed the difficulty patients considering an ICD had with articulating their values in the context of an ICD health decision and highlighted the challenge to effectively elicit patients’ values within health decisions overall. It is suggested that there should be a shift away from the use of the word “values” when speaking directly to patients toward language such as “what matters to you the most” or “what is most important to you”.
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