Browsing by Author "Majnemer, Annette"

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    Developing a Canadian evaluation framework for patient and public engagement in research: study protocol
    (2021-02-25) L’Espérance, Audrey; O’Brien, Nadia; Grégoire, Alexandre; Abelson, Julia; Canfield, Carolyn; Del Grande, Claudio; Dogba, Maman J.; Fancott, Carol; Levasseur, Mary A.; Loignon, Christine; Majnemer, Annette; Pomey, Marie-Pascale; Rasiah, Jananee; Salsberg, Jon; Santana, Maria; Tremblay, Marie-Claude; Urquhart, Robin; Boivin, Antoine
    Abstract 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.
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    Study protocol for Attachment & Child Health (ATTACHTM) program: promoting vulnerable Children’s health at scale
    (2022-08-19) Anis, Lubna; Letourneau, Nicole; Ross, Kharah M.; Hart, Martha; Graham, Ian; Lalonde, Simone; Varro, Suzanna; Baldwin, Alanna; Soulsby, Angela; Majnemer, Annette; Donnelly, Carlene; Piotrowski, Caroline; Collier, Carrie; Lindeman, Cliff; Goldowitz, Dan; Isaac, Dawn; Thomson, Denise; Serré, Diane; Citro, Elisabeth; Zimmermann, Gabrielle; Pliszka, Harold; Mann, Jackie; Baumann, Janine; Piekarski, Joanna; Dalton, Jo-Anne; Johnson-Green, Joy; Wood, Karen; Bruce, Marcia; Santana, Maria; Mayer, Matt; Gould, Meghan; Kobor, Michael; Flowers, Michelle; Haywood, Michelle; Koerner, Michelle; Parker, Nancy; Muhajarine, Nazeem; Fairie, Paul; Chrishti, Rabea; Perry, Robert; Merrill, Sarah; Pociuk, Shellie; StephanieTaylor; Cole, Steve; Murphy, Tim; Marchment, Tmira; Xavier, Virginia; Shajani, Zahra; West, Zoe
    Abstract Background Children’s exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents’ capacity for insight into their child’s and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACHTM) program has been implemented and tested in seven rapid-cycling pilot studies (n = 64) and found to significantly improve parents’ RF in the domains of attachment, parenting quality, immune function, and children’s cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACHTM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. Methods The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACHTM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire – 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACHTM implementation. Discussion The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACHTM in community agencies. Trial registration Name of registry: https://clinicaltrials.gov/. Registration number: NCT04853888 . Date of registration: April 22, 2021.