Engaging youth and parents in clinical pediatric research: A case-based example.

Background: Youth and parent engagement is a key component of clinical research. There are many ways to actively and meaningfully engage youth and parents as integral members of research teams, for example, through ad-hoc committees, advisory councils, or as co-leads on projects. When youth and parents are actively and meaningfully engaged in research projects, they share knowledge from their lived experiences to improve the quality and relevance of research. Methods: We describe a case-based example of engaging youth and parent research partners when co-designing a questionnaire to assess preferences for pediatric headache treatments, from both a researcher and youth/parent perspective. We also summarize best practices in patient and family engagement from the literature and pertinent guidelines to assist researchers with integrating patient and family engagement into their studies. Results: As researchers, we felt that the integration of a youth and parent engagement plan into our study significantly altered and strengthened questionnaire content validity. We encountered challenges throughout the process and detailed these experiences to help educate others about challenge mitigation and best practices in youth and parent engagement. As youth and parent partners, we felt that engaging in the process of questionnaire development was an exciting and empowering opportunity, and that our feedback was valued and integrated. Conclusions: By sharing our experience, we hope to catalyze thought and discussion around the importance of youth and parent engagement in pediatric research, with the goal of stimulating more appropriate, relevant, and high-quality pediatric research and clinical care in the future.

Instruments to assess frailty in community dwelling older adults: A systematic review.

BACKGROUND AND OBJECTIVES: Frailty has been investigated for decades with a proliferation of frailty instruments attributed to many existing conceptual models and operational criteria. The purpose of this systematic review was to understand how instruments were developed to assess frailty in community dwelling older adults. RESEARCH DESIGN AND METHODS: This review followed standard conduct, reporting, and quality assessment guidelines. Articles published in English that described instruments used to measure frailty in community dwelling older adults 65 years of age or older; and instruments developed for research purposes or in clinical practice were included. MEDLINE, CINAHL, and EMBASE (March 2022) and Abstracts in Social Gerontology (March 2020) were searched. RESULTS: A total of 32 frailty instruments were identified with self-reported, performance-based, or researcher/clinician observed items. Common characteristics across instruments were categorized as follows: frailty conceptualized as a state or a syndrome; frailty operationalized as continuous, categorical, or dichotomous; and instruments developed for clinical, research or both purposes. All items in the instruments were developed based on theories of frailty; some were informed by panels of experts; and others used statistical methods to compare variables across instruments. DISCUSSION AND IMPLICATIONS: Results from this review will assist clinicians/researchers select appropriate instruments to assess frailty in older adults living in the community. It is time to pause on the development of more instruments. Instead, efforts must be directed toward advancing research and clinical practice using existing validated instruments to inform clinical decision-making and health care coordination to avoid, delay, or manage frailty in the community. TWEETABLE ABSTRACT: More research and clinical practice using existing validated frailty instruments to assess frailty in older adults living in the community is a must!

Enabling Healthy Aging to AVOID Frailty in Community Dwelling Older Canadians.

The Canadian population is aging. With aging, biological and social changes occur increasing the risk of developing chronic conditions and functional loss leading to frailty. Older adults living with frailty are more vulnerable to minor stressors, take longer to recover from illness, and have difficulty participating in daily activities. The Canadian Frailty Network's (CFN) mission is to improve the lives of older adults living with frailty. In September 2019, CFN launched the Activity & Exercise, Vaccination, Optimization of medications, Interaction & Socialization, and Diet & Nutrition (AVOID) Frailty public health campaign to promote assessing and reducing risk factors leading to the development of frailty. As part of the campaign, CFN held an Enabling Healthy Aging Symposium with 36 stakeholders from across Canada. Stakeholders identified individual and community-level opportunities and challenges for the enablement of healthy aging and frailty mitigation, as part of a focused consultative process. Stakeholders ranked the three most important challenges and opportunities at the individual and community levels for implementing AVOID Frailty recommendations. Concrete actions, further research areas, policy changes, and existing resources/programs to enhance the AVOID Frailty campaign were identified. The results will help inform future priorities and behaviour change strategies for healthy aging in Canada.

What are the respiratory health research priorities in Alberta, Canada? A stakeholder consultation.

OBJECTIVE: The Respiratory Health Strategic Clinical Network (RHSCN) was launched to facilitate respiratory and sleep health through implementation of innovative, patient-centred, evidence-informed coordinated services in Alberta. In collaboration with project partners, the RHSCN aimed to determine the respiratory research priorities for Alberta. DESIGN: The four phases of this research prioritisation project were (1) identifying research questions from stakeholders, (2) determining which research questions had been answered in existing literature, (3) prioritising unanswered questions and (4) finalising the priorities through an inperson workshop. SETTING: The study occurred in Alberta, Canada over a 2-year period beginning in March 2017. PARTICIPANTS: A total of 448 patients, clinicians and other stakeholders consented to participate in the survey. RESULTS: A total of 595 possible questions were submitted, with 343 unique questions identified. Of the questions, 94 were out of scope, 155 answered by existing literature and 10 were combined with others, while 83 were determined to be unanswered in the literature. Stakeholders were surveyed again to prioritise the remaining 83 questions and they were reviewed by the project's Steering Committee (clinicians and patients). At the inperson workshop, the Steering Committee identified 17 research topics as priority areas for respiratory and sleep research in Alberta. CONCLUSION: A stakeholder-led research prioritisation process identified optimal clinical management/follow-up, equitable access to services, and management of social, psychological and mental health issues related to respiratory/sleep health as priority research areas.

Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study.

INTRODUCTION: Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of clinical trials due to the potential for ethical and methodological benefits. As patient engagement in clinical trials increases, there is a need to evaluate the approaches of these activities to contribute evidence on what is most appropriate and successful. The purpose of this study is to evaluate patient engagement processes and the activities of patient partners during and after a paediatric mental healthcare trial. METHODS AND ANALYSIS: Using a mixed-methods study design, we will evaluate patient partners' engagement activities across set time-points during the trial and after trial completion. In this study, the term 'patient partner' is inclusive of two groups of people with lived experience: (1) caregivers (parents, formal/informal caregivers and family), and (2) youth (aged 15-24 years). Engagement will be evaluated using the participant and project questionnaires of the Public and Patient Engagement Evaluation Tool (PPEET), followed sequentially by semi-structured interviews. Quantitative data from the PPEET questionnaire will be analysed and reported using descriptive statistics. Data from open-ended questions from the PPEET questionnaires and semi-structured interviews will be analysed using thematic analysis. ETHICS AND DISSEMINATION: Approval from Athabasca University Research Ethics Board will be obtained for this project. Findings will be disseminated at both academic and public venues whether in-person or online, and using platforms that are caregiver and youth friendly. TRIAL REGISTRATION NUMBER: NCT04902391.

An Innovative Model of Pediatric Emergency Department Mental Health Care: Protocol for a Multicenter Type 1 Effectiveness-Implementation Cluster Randomized Trial.

Over the past decade, visits to American and Canadian emergency departments (EDs) for child and youth mental health care have increased substantially.1,2 Acute mental health crises can occur as a result of a variety of concerns, including those that are life threatening (eg, suicide attempts), pose safety concerns (eg, suicidal intentions, aggressive behaviors, alcohol and other drug use), and are physically distressing to the child or youth (eg, panic attacks). ED health care providers play a vital role in assessing the safety and well-being of the child or youth and referring them to services for ongoing care.3,4 During the ED visit, assessment and care should pinpoint risks, inform treatment, and consider family needs and preferences as part of a patient-centered approach. Yet, this approach to care is not widely adopted in EDs. Most EDs do not require the use of pediatric-specific mental health tools to guide assessments or have patient-centered procedures in place to guide the care of patients with mental health emergencies.5-7 Our team believes these limitations have led to the provision of acute mental health care that can lack sufficient quality and efficiency. This study protocol describes a trial designed to evaluate if a novel mental health care bundle that was co-designed with parents and youth results in greater improvements in the well-being of children and youth 30 days after seeking ED care for mental health and/or substance misuse concerns compared with existing care protocols. We hypothesize that the bundle will positively impact child and youth well-being, while also providing cost-effective health care system benefits.

Customizing a Program for Older Adults Living with Frailty in Primary Care.

Coordination of primary care is essential to improving care delivery within health systems, especially for older adults with increased health/social needs. A program jointly funded by the Canadian Foundation for Healthcare Improvement and Canadian Frailty Network, was implemented in a nurse practitioner-led clinic to address the gap in frailty care for older adults. The clinic was situated within a health and social services organization with a mandate to enhance the quality of life of older adults living in the community. Through this program, a frailty assessment pathway and social/clinical prescriptions were implemented with necessary adaptations as a result of COVID-19.

Patients as partners in health research: A scoping review.

BACKGROUND: The role of patient involvement in health research has evolved over the past decade. Despite efforts to engage patients as partners, the role is not well understood. We undertook this review to understand the engagement practices of patients who assume roles as partners in health research. METHODS: Using a recognized methodological approach, two academic databases (MEDLINE and EMBASE) and grey literature sources were searched. Findings were organized into one of the three higher levels of engagement, described by the Patient and Researcher Engagement framework developed by Manafo. We examined and quantified the supportive strategies used during involvement, used thematic analysis as described by Braun and Clarke and themed the purpose of engagement, and categorized the reported outcomes according to the CIHR Engagement Framework. RESULTS: Out of 6621 records, 119 sources were included in the review. Thematic analysis of the purpose of engagement revealed five themes: documenting and advancing PPI, relevance of research, co-building, capacity building and impact on research. Improved research design was the most common reported outcome and the most common role for patient partners was as members of the research team, and the most commonly used strategy to support involvement was by meetings. CONCLUSION: The evidence collected during this review advanced our understanding of the engagement of patients as research partners. As patient involvement becomes more mainstream, this knowledge will aid researchers and policy-makers in the development of approaches and tools to support engagement. PATIENT/USER INVOLVEMENT: Patients led and conducted the grey literature search, including the synthesis and interpretation of the findings.

Co-designing strategies to support patient partners during a scoping review and reflections on the process: a commentary.

BACKGROUND: Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibility than traditionally described by patient participants who are primarily studied. A gap still remains in the understanding of how to engage patients. The objective of this commentary is to describe the involvement of four patient partners who worked with researchers during a scoping review. MAIN BODY: We describe approaches to meaningfully engage patient partners in conducting a scoping review. Patient partners were recruited through existing patient networks. Capacity development in the form of the training was provided to these four patient partners. Engagement strategies were co-designed with them to address potential barriers of involvement and acquiring the necessary skills for the successful completion of this scoping review. CONCLUSION: Involving patients partners early in the project established the foundational relationship so patient partners could contribute to their fullest. We witnessed the success of working alongside patient partners as members of the research team with a clear and mutually agreed upon purpose of the engagement in health research activities and how this seemed to contribute to an effective and rewarding experience for both researcher and patient partner.

Patients have taken on roles as members of research teams, often involved in a wide range of activities, such as members of advisory committees. Despite these important new roles for patients, broadly, researchers are still challenged with identifying opportunities of benefit to all involved. We describe the involvement of four patient partners who worked with researchers to complete a scoping review. We detail the approaches used to support the project and the benefits and challenges we experienced while involving patients in this review. Co-designing engagement approaches assisted in gaining the support and buy-in necessary from patient partners for the successful completion of this scoping review. Involving patients partners early in the project established the foundational relationship for patient partners to contribute to their fullest. We witnessed the success of working alongside patient partners as members of the research team with a clear and mutually agreed upon purpose of the engagement in health research activities and how this seemed to contribute to an effective and rewarding experience for both researchers and patient partners.

A Taxonomy of Supports and Barriers to Family-Centered Adult Critical Care: A Qualitative Descriptive Study.

Family-centered care (FCC) improves the quality and safety of health care provision, reduces cost, and improves patient, family, and provider satisfaction. Despite several decades of advocacy, research, and evidence, there are still challenges in uptake and adoption of FCC practices in adult critical care. The objective of this study was to understand the supports and barriers to family-centered adult critical care (FcACC). A qualitative descriptive design was used to develop a taxonomy. Interviews and focus groups were conducted with 21 participants in Alberta, Canada, from 2013 to 2014. Analysis revealed two main domains of supports and barriers to FcACC: PEOPLE and STRUCTURES. These domains were further classified into concepts and subconcepts that captured all the reported data. Many factors at individual, group, and organizational levels influenced the enactment of FcACC. These included health care provider beliefs, influence of primary versus secondary tasks, perceptions of family work, nurses' emotional labor, and organizational culture.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.

BACKGROUND: Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. OBJECTIVE: This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. METHODS: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. DISCUSSION: The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

An Asthma Specialist's Consult Letter: What Do Parents Think About Receiving a Copy?

OBJECTIVE: Written summaries about visits with general practitioners' have influenced increased patient knowledge, satisfaction, recollection, and compliance, and strengthened the doctor-patient relationship. All previous studies about this communication pre-dated the electronic medical record (EMR) era, and none examined views from parents of children with asthma. We explored parents' perceptions about receiving a hard copy summary Letter immediately following the visit, with the pediatric asthma specialist about findings and the care plan for their child. METHODS: A Parent Advisory Council helped inform this pilot study, an observational cross-sectional electronic survey. Each Letter included a comprehensive summary of the child's visit with the specialist. RESULTS: Previous findings from patients about the benefits of receiving this Letter were strongly supported by data from 51 participants. Interestingly, more than 54% of respondents preferred receiving a hard copy Letter over an electronic copy, and 98% wanted other clinicians to adopt this practice. CONCLUSION: Parents of children with asthma value and want timely written information of this nature from other clinicians. PRACTICE IMPLICATIONS: These results can influence further asthma research to promote a change in the perceptions of clinicians, parents, and patients about timely access to health information in the EMR era.

Prefrailty in older adults: A concept analysis.

BACKGROUND: The concept of prefrailty lacks clarity. Often, prefrailty is defined in relation to frailty and less often as a distinct concept. Theoretical evidence for prefrailty is minimal unlike frailty, which has been examined for decades although consensus about how to measure frailty has not been achieved. OBJECTIVE: The aim of this study was to conduct a concept analysis of prefrailty to provide greater understanding of this phenomenon in the context of older adults. DESIGN: Rodgers and Knafl's evolutionary concept analysis approach. DATA SOURCES: The literature search for the concept analysis was conducted as follows: three databases (MEDLINE, CINAHL, and Abstracts in Social Gerontology databases) were searched using carefully selected search terms; and grey literature was not included. REVIEW METHODS: In phase one, we used the search strategy and search terms to narrow the search for relevant articles. We selected articles that met the following inclusion criteria: (1) how prefrailty was conceptualized; (2) how prefrailty was measured; and (3) interventions targeted towards prefrailty. In phase two, we extracted data from included articles. In phase three, we analyzed data using thematic analysis and findings were presented as attributes, antecedents, consequences, and related concepts of prefrailty. One example of prefrailty in older adults was presented to highlight the concept in praxis. In phase four, methodological and substantive area experts reviewed and contributed to discussion and interpretation of findings including disciplinary perspectives of prefrailty. RESULTS: A total of 41 articles were included for synthesis. The attributes of prefrailty were predisposing in nature, non-specific, multidimensional, and cumulative in effects. Antecedents of prefrailty were categorized into the following domains: sociodemographic characteristics, comorbidity, behaviours, and laboratory/clinical markers. Consequences of prefrailty were separated into two themes: increased risk of adverse outcomes and advancing levels of frailty. Surrogate and related terms (noted in the literature) that had shared attributes with prefrailty were increased vulnerability, transitional stage, dynamic process, progressive process with latent phase, and physical frailty. CONCLUSIONS: As a result of conducting this concept analysis, we found that prefrailty was defined as a clinically silent process that predisposes individuals to frailty. Prefrailty, as a concept, was derived from the Fried's operational definition for frailty. Attributes, antecedents, consequences, and related terms will help clinicians consider how prefrailty presents in older adults separate from frailty. Further research is needed to build upon our understanding from this concept analysis. Tweetable Abstract: Prefrailty is unclear as a concept - Research on sociodemographic characteristics of older adults living with frailty will help clarify.

The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada.

This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils' governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients' valuable input to inform health system changes and drive priorities at a policy level.

Albertans for Health Research Network: Form, Fit, and Function.

The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners and researchers online. AB4HR was developed in response to an identified need-a user-friendly online forum for both patient partners and researchers to access, so that they can better work together, as partners, in health research. We codesigned AB4HR and identified ways to improve the form, fit, and function of an existing registry through discussion groups with patient partners and researchers. We found 3 main themes derived from the perspective shared by patient partners and researchers. Patient partners and researchers agreed that the existing registry provides a forum to connect with one another in an easy, low-barrier way. However, there were opportunities for improvement with AB4HR, including possibilities for greater interaction between patient partners and researchers to promote more collaborative partnerships.

Peer-to-peer shadowing as a technique for the development of nurse middle managers clinical leadership.

Purpose The purpose of this study was to explore the experiences and impact of peer-to-peer shadowing as a technique to develop nurse middle managers' clinical leadership practices. Design/methodology/approach A qualitative descriptive study was conducted to gain insight into the experiences of nurse middle managers using semi-structured interviews. Data were analysed into codes using constant comparison and similar codes were grouped under sub-themes and then into four broader themes. Findings Peer-to-peer shadowing facilitates collective reflection-in-action and enhances an "investigate stance" while acting. Nurse middle managers begin to curb the caring disposition that unreflectively urges them to act, to answer the call for help in the here and now, focus on ad hoc "doings", and make quick judgements. Seeing a shadowee act produces, via a process of social comparison, a behavioural repertoire of postponing reactions and refraining from judging. Balancing the act of stepping in and doing something or just observing as well as giving or withholding feedback are important practices that are difficult to develop. Originality/value Peer-to-peer shadowing facilitates curbing the caring disposition, which is essential for clinical leadership development through unlocking a behavioural repertoire that is not easy to reveal because it is, unreflectively, closely knit to the professional background of the nurse managers. Unlike most leadership development programmes, that are quite introspective and detached from context, peer-to-peer shadowing does have the potential to promote collective learning while acting, which is an important process.