Browsing by Author "Bruce, Marcia"

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    Key ingredients for successful collaboration in health research: perspectives of patient research partners
    (2024-06-05) Bruce, Marcia; Yogaratnam, Karthika; Suryaprakash, Nitya; Barker, Karis L.; Marshall, Deborah A.
    Abstract Background There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. Main body We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. Conclusion Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.
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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.