Food insecurity impacts diet quality and adherence to the gluten-free diet in youth with celiac disease.

OBJECTIVES: Celiac disease (CD) is an autoimmune gastrointestinal disorder that requires a strict lifelong gluten-free diet (GFD). Gluten-free (GF) foods are more expensive and less readily accessible than gluten-containing foods, contributing to an increased risk for food insecurity (FI). The study aimed to determine associations between GF-FI, sociodemographic risk factors and child dietary adherence and diet quality (DQ). METHODS: A 26-item, cross-country online survey was administered through social media to parents of children with CD on the GFD. The survey elicited household and CD child sociodemographic and clinical characteristics (e.g., duration of CD), measures of household FI, child DQ and GFD adherence, and parents' concerns related to GF food. Household GF-FI was evaluated using the validated Hunger Vital Sign™ and the US Department of Agriculture Six-Item Short Form Household Food Security Survey Module. RESULTS: GF-FI occurred in 47% of households with children with CD with >30% reporting low to very low food security. Sociodemographic risk factors identified included lower income, renters, rural residency, single-parental households, and having children with additional dietary restrictions (p < 0.001). Regardless of FI status, a majority of households reported experiencing significantly higher GF food expenditure. GF-FI was associated with reduced adherence to the GFD, increased consumption of processed GF food, and lower intakes of fresh fruits and vegetables and GF grains among children with CD (p < 0.05). CONCLUSIONS: GF-FI is prevalent in this multiethnic cohort of households with CD children and is associated with worsening DQ and GFD adherence. Policy interventions are urgently needed to address GF-FI.

Study protocol for Attachment & Child Health (ATTACHTM) program: promoting vulnerable Children's health at scale.

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.

Key ingredients for successful collaboration in health research: perspectives of patient research partners.

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.

Factors that influence vaccination communication during pregnancy: provider and patient perspectives using the theoretical domains framework.

INTRODUCTION: Vaccination during pregnancy is recommended but uptake is low and evidence on the topic is limited. AIMS: This study aimed to identify the drivers of current behavior and barriers to change for health care practitioners (HCPs) and pregnant patients in Canada. METHODS: This study is an in-depth qualitative investigation of the factors influencing HCPs' vaccination communication during pregnancy, as well as factors influencing pregnant patients' vaccination uptake in Canada using the Theoretical Domains Framework. Three data sources were used: (1) perinatal HCP interviews before COVID-19; (2) perinatal HCP interviews regarding vaccine communication after COVID-19; and (3) survey of pregnant or lactating women after COVID-19. RESULTS: Forty-seven interviews and 169 participant responses were included. Perinatal HCPs reported limited information on vaccine communication or difficulty keeping up-to-date (Environmental context and resources; Knowledge; Beliefs about capabilities). HCPs lacked confidence and struggled with lack of training to address vaccine hesitancy without alienating patients (Beliefs about capabilities; Skills). Pregnant or lactating women struggled with the amount of information they felt was imposed on them, had concerns about the perceived negative consequences of vaccination, and felt pressure to understand what was best for them and their babies (Knowledge; Beliefs about consequences; Social influences). CONCLUSIONS: Our study provides a theory-based approach to identify influencing factors that can be mapped to theory-based intervention components, improving the likelihood of intervention effectiveness. The study is the first step in adapting an existing intervention to improve vaccine communication during pregnancy, ultimately, increasing vaccination uptake. SPANISH ABSTRACT: http://links.lww.com/IJEBH/A260.

Perspectives of parents with lived experience of cytomegalovirus infection, on universal newborn screening for congenital cytomegalovirus (cCMV) in Canada: a patient-led qualitative study.

OBJECTIVE: To understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada. DESIGN: A qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regarding UNS for cCMV. Data were analysed iteratively using inductive thematic analysis and narrative story analysis. SETTING: Canada-wide study conducted via video conference from October to December 2023. PATIENTS: 12 participants from five Canadian provinces who self-identified as 18 years of age or older and as having parental lived experience with cytomegalovirus (CMV) or cCMV participated in the study. RESULTS: We identified three themes: (1) attitudes about UNS for cCMV, including participants' unanimous support for UNS and confirmation that parental anxiety is not a deterrent for screening, (2) cCMV diagnosis, including the importance of coupling cCMV diagnosis with access to treatment and medical support and (3) awareness of cCMV, where participants shared their frustration about the lack of public and pregnant people's awareness of cCMV. CONCLUSIONS: Parental anxiety is not a deterrent for UNS for cCMV. Children with cCMV and their families deserve every opportunity to attain their best possible outcomes. UNS offers children with cCMV access to early intervention if they need it, and also helps to raise awareness and education to prevent future CMV infections.

Understanding COVID-19 vaccination decisions during pregnancy and while breastfeeding in a Canadian province.

BACKGROUND: Vaccination in pregnancy is important for preventing illness for mothers and babies; however, vaccine uptake in pregnant individuals is lower than non-pregnant females of fertile age. Given the devastating effects of COVID-19 and the increased morbidity and mortality risk for pregnant individuals, it is important to understand the determinants of vaccine hesitancy in pregnancy. The focus of our study was to explore COVID-19 vaccination among pregnant and breastfeeding individuals and its association with their reasons (psychological factors) for vaccination using the 5C scale and other factors. METHODS: An online survey investigating prior vaccinations, level of trust in healthcare providers, demographic information, and the 5C scale was used for, pregnant and breastfeeding individuals in a Canadian province. RESULTS: Prior vaccinations, higher levels of trust in medical professionals, education, confidence, and collective responsibility predicted increased vaccine uptake pregnant and breastfeeding individuals. CONCLUSIONS: There are specific psychological and socio-demographic determinants that affect COVID-19 vaccine uptake in pregnant populations. Implications of these findings include targeting these determinants when informing and developing intervention and educational programs for both pregnant and breastfeeding individuals, as well as healthcare professionals who are making vaccine recommendations to patients. Study limitations include a small sample and lack of ethnic and socioeconomic diversity.

Resources available for parent-provider vaccine communication in pregnancy in Canada: a scoping review.

OBJECTIVE: Vaccination in pregnancy (VIP) is a protective measure for pregnant individuals and their babies. Healthcare provider's (HCP) recommendations are important in promoting VIP. However, a lack of strong recommendations and accessible resources to facilitate communication impact uptake. This study sought to determine the extent of and characterise the resources available for parent-provider vaccine communication in pregnancy in Canada using a behavioural theory-informed approach. DESIGN: Scoping review. METHODS: In accordance with the JBI methodology, nine disciplinary and interdisciplinary databases were searched, and a systematic grey literature search was conducted in March and January 2022, respectively. Eligible studies included resources available to HCPs practising in Canada when discussing VIP, and resources tailored to pregnant individuals. Two reviewers piloted a representative sample of published and grey literature using inclusion-exclusion criteria and the Authority, Accuracy, Coverage, Objectivity, Date, Significance guidelines (for grey literature only). Sixty-five published articles and 1079 grey reports were screened for eligibility, of which 19 articles and 166 reports were included, respectively. RESULTS: From the 19 published literature articles and 166 grey literature reports, 95% were driven by the 'Knowledge' domain of the Theoretical Domains Framework, while n=34 (18%) addressed the 'Skills' domain. Other gaps included a lack of VIP-specific tools to address hesitancy and a lack of information on culturally safe counselling practices. CONCLUSION: The study suggests a need for resources in Canada to improve VIP communication skills and improve access to vaccination information for HCPs and pregnant individuals. The absence of such resources may hinder VIP uptake.

Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: a qualitative, patient-led, Canadian study.

OBJECTIVE: To gain an insight into coping strategies that people living with chronic pain use to self-manage their pain. DESIGN: This qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach. It was conducted by people with chronic pain lived experience, ensuring that patient perspective and needs were considered and addressed throughout the research cycle. Purposeful sampling was used for recruiting individuals living with chronic pain. A focus group and one-on-one semi-structured interviews were conducted via videoconference. The data were analysed iteratively using inductive thematic analysis and narrative story analysis. SETTING: Calgary, Alberta, Canada. PARTICIPANTS: Eleven adult participants, between the ages of 18 and 65, who self-identified as living with chronic pain for greater than 2 years. RESULTS: Three main themes emerged from the data: (1) the elements of chronic pain, (2) the chronic pain journey to acceptance and (3) daily coping strategies for chronic pain. Participants thought it was important to discuss these three themes because the daily coping strategies that they employed at any given time (theme 3) depended on the factors discussed in themes 1 and 2. Overlaying all of this is also a grieving process that people living with chronic pain may have to go through more than once. Participants also identified recommendations for healthcare professionals to support people living with chronic pain. CONCLUSIONS: Dealing with chronic pain affects all aspects of a person's life and involves a grieving process. When treating patients with chronic pain, it is important for healthcare professionals to understand the journey that people living with chronic pain go through, not just coping strategies. Diagnosis is critical for a patient's acceptance and in helping them find their new normal where they can employ daily coping strategies to manage their pain.