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AnteayerBMJ Open

Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study

Por: Fisher · E. R. · Cragun · D. · Dedrick · R. F. · Lumpkins · C. Y. · Ramirez · M. · Kaphingst · K. A. · Petersen · A. · MacFarlane · I. M. · Redlinger-Grosse · K. · Shire · A. · Culhane-Pera · K. A. · Zierhut · H. A.
Introduction

In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice.

Methods and analysis

A mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis.

Ethics and dissemination

This study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study’s CABs. A lay summary will also be disseminated to all participants.

De-imFAR phase II project: a study protocol for a cluster randomised implementation trial to evaluate the effectiveness of de-implementation strategies to reduce low-value statin prescribing in the primary prevention of cardiovascular disease

Por: Sanchez · A. · Pijoan · J. I. · Sainz de Rozas · R. · Lekue · I. · San Vicente · R. · Quindimil · J. A. · Rotaeche · R. · Etxeberria · A. · Mozo · C. · Martinez-Cengotitabengoa · M. · Monge · M. · Gomez-Ramirez · C. · Samper · R. · Ogueta Lana · M. · Celorrio · S. · Merino-Inda · N.
Introduction

This study aims to reduce potentially inappropriate prescribing (PIP) of statins and foster healthy lifestyle promotion in cardiovascular disease (CVD) primary prevention in low-risk patients. To this end, we will compare the effectiveness and feasibility of several de-implementation strategies developed following the structured design process of the Behaviour Change Wheel targeting key determinants of the clinical decision-making process in CVD prevention.

Methods and analysis

A cluster randomised implementation trial, with an additional control group, will be launched, involving family physicians (FPs) from 13 Integrated Healthcare Organisations (IHOs) of Osakidetza-Basque Health Service with non-zero incidence rates of PIP of statins in 2021. All FPs will be exposed to a non-reflective decision assistance strategy based on reminders and decision support tools. Additionally, FPs from two of the IHOs will be randomly assigned to one of two increasingly intensive de-implementation strategies: adding a decision information strategy based on knowledge dissemination and a reflective decision structure strategy through audit/feedback. The target population comprises women aged 45–74 years and men aged 40–74 years with moderately elevated cholesterol levels but no diagnosed CVD and low cardiovascular risk (REGICOR

Ethics and dissemination

The study was approved by the Basque Country Clinical Research Ethics Committee and was registered in ClinicalTrials.gov (NCT04022850). Results will be disseminated in scientific peer-reviewed journals.

Trial registration number

NCT04022850.

Can communities be mobilised to build capacity to respond to the COVID-19 pandemic? A qualitative process evaluation

Por: Harris · J. · Ramirez · P. · Arnold · F. · Redgrave · P.
Objectives

Government guidance to manage COVID-19 was challenged by low levels of health and digital literacy and lack of information in different languages. ‘Covid Confidence’ sessions (CC-sessions) were evaluated to assess their effectiveness in counteracting misinformation and provide an alternative source of information about the pandemic.

Design

We worked with community anchor organisations to co-ordinate online CC-sessions serving three economically deprived, ethnically mixed, neighbourhoods. We conducted a qualitative, participatory process evaluation, in tandem with the CC-sessions to explore whether a popular opinion leader/local champion model of health promotion could mobilise pandemic responses. Group discussions were supplemented by final interviews to assess changes in community capacity to mobilise.

Setting

Sheffield, England, September 2020 to November 2021.

Participants

Community leaders, workers and volunteers representing a variety of local organisations resulted in 314 attendances at CC-sessions. A group of local health experts helped organisations make sense of government information.

Results

CC-sessions fostered cross-organisational relationships, which enabled rapid community responses. Community champions successfully adapted information to different groups. Listening, identifying individual concerns and providing practical support enabled people to make informed decisions on managing exposure and getting vaccinated. Some people were unable to comply with self-isolation due to overcrowded housing and the need to work. Communities drew on existing resources and networks.

Conclusions

CC-sessions promoted stronger links between community organisations which reduced mistrust of government information. In future, government efforts to manage pandemics should partner with communities to codesign and implement prevention and control measures.

Utilisation of growth monitoring and promotion services and associated factors among mothers of children younger than 2 years in Gondar Zuria District, northwest Ethiopia: a community-based, cross-sectional study

Por: Belew · A. K. · Worku · N. · Gelaye · K. A. · Gonete · K. A. · Tamir Hunegnaw · M. · Muhammad · E. A. · Astale · T. · Mitike · G. · Abebe · Z.
Objective

The study aimed to assess the utilisation of growth monitoring and promotion services and the associated factors among mothers of children under 2 years old in Gondar Zuria District, northwest Ethiopia.

Design

Community-based, cross-sectional study.

Setting

The study was conducted in Gondar Zuria District, Central Gondar Zone. Data collection was conducted from 10 March to 5 April 2022.

Participants

576 mother–child pairs, recruited via a multistage, stratified random sampling technique.

Outcome measures and analysis

Utilisation of growth monitoring and promotion services was the outcome of the study. Data were entered into Epi Info V.7 and exported to Statistical Package for the Social Sciences V.24.0 for further analysis. Both bivariable and multivariable logistic regression analyses were used to identify factors associated with utilisation of growth monitoring services. A p value less than 0.05 was considered significant for the outcome variable.

Results

The utilisation of growth monitoring and promotion services among children aged 0–23 months was 26.6% (95% CI 22.9, 30.2). Health centre delivery (adjusted OR (AOR)=1.56; 95% CI 1.02, 2.68), postnatal care visits (AOR=3.13; 95% CI 1.99, 4.90), regular growth monitoring and promotion sessions (AOR=6.53; 95% CI 2.43, 9.34), and wealth status (AOR=5.98; 95% CI 3.09, 10.58) were significantly associated with utilisation of growth monitoring and promotion services.

Conclusion

Less than one in three children aged 0–23 months saw utilisation of growth monitoring and promotion services in the study setting. Birthplace, postnatal care follow-up, regular growth promotion and monitoring sessions, and wealth status were associated with utilisation of growth monitoring and promotion services. Enhancing skilled birth delivery, promoting postnatal care follow-up and expanding the availability of growth monitoring and promotion outreach sites could be useful to improve the utilisation of growth monitoring and promotion services.

Understanding symptoms suggestive of long COVID syndrome and healthcare use among community-based populations in Manitoba, Canada: an observational cross-sectional survey

Por: Kosowan · L. · Sanchez-Ramirez · D. C. · Katz · A.
Objective

This study aims to characterise respondents who have COVID-19 and long COVID syndrome (LCS), and describe their symptoms and healthcare utilisation.

Design

Observational cross-sectional survey.

Setting

The one-time online survey was available from June 2022 to November 2022 to capture the experience of residents in Manitoba, Canada.

Participant

Individuals shared their experience with COVID-19 including their COVID-19 symptoms, symptoms suggestive of LCS and healthcare utilisation. We used descriptive statistics to characterise patients with COVID-19, describe symptoms suggestive of LCS and explore respondent health system use based on presenting symptoms.

Results

There were 654 Manitobans who responded to our survey, 616 (94.2%) of whom had or provided care to someone who had COVID-19, and 334 (54.2%) reported symptoms lasting 3 or more months. On average, respondents reported having 10 symptoms suggestive of LCS, with the most common being extreme fatigue (79.6%), issues with concentration, thinking and memory (76.6%), shortness of breath with activity (65.3%) and headaches (64.1%). Half of the respondents (49.2%) did not seek healthcare for COVID-19 or LCS. Primary care was sought by 66.2% respondents with symptoms suggestive of LCS, 15.2% visited an emergency department and 32.0% obtained care from a specialist or therapist. 62.6% of respondents with symptoms suggestive of LCS reported reducing work, school or other activities which demonstrate its impact on physical function and health-related quality of life.

Conclusion

Consistent with the literature, there are a variety of symptoms experienced among individuals with COVID-19 and LCS. Healthcare providers face challenge in providing care for patients with a wide range of symptoms unlikely to respond to a single intervention. These findings support the value of interdisciplinary COVID-19 clinics due to the complexity of the syndrome. This study confirms that data collected from the healthcare system do not provide a comprehensive reflection of LCS.

Preventing chronic malnutrition in children under 2 years in rural Angola (MuCCUA trial): protocol for the economic evaluation of a three-arm community cluster randomised controlled trial

Por: Martin-Canavate · R. · Custodio · E. · Trigo · E. · Romay-Barja · M. · Herrador · Z. · Aguado · I. · Ramirez · F. · Faria · L. M. · Silva-Gerardo · A. · Lima · J. C. · Iraizoz · E. · Marques · T. · Vargas · A. · Gomez · A. · Puett · C. · Molina · I.
Introduction

Chronic malnutrition is a serious problem in southern Angola with a prevalence of 49.9% and 37.2% in the provinces of Huila and Cunene, respectively. The MuCCUA (Mother and Child Chronic Undernutrition in Angola) trial is a community-based randomised controlled trial (c-RCT) which aims to evaluate the effectiveness of a nutrition supplementation plus standard of care intervention and a cash transfer plus standard of care intervention in preventing stunting, and to compare them with a standard of care alone intervention in southern Angola. This protocol describes the planned economic evaluation associated with the c-RCT.

Methods and analysis

We will conduct a cost-efficiency and cost-effectiveness analysis nested within the MuCCUA trial with a societal perspective, measuring programme, provider, participant and household costs. We will collect programme costs prospectively using a combined calculation method including quantitative and qualitative data. Financial costs will be estimated by applying activity-based costing methods to accounting records using time allocation sheets. We will estimate costs not included in accounting records by the ingredients approach, and indirect costs incurred by beneficiaries through interviews, household surveys and focus group discussions. Cost-efficiency will be estimated as cost per output achieved by combining activity-specific cost data with routine data on programme outputs. Cost-effectiveness will be assessed as cost per stunting case prevented. We will calculate incremental cost-effectiveness ratios comparing the additional cost per improved outcome of the different intervention arms and the standard of care. We will perform sensitivity analyses to assess robustness of results.

Ethics and dissemination

This economic evaluation will provide useful information to the Angolan Government and other policymakers on the most cost-effective intervention to prevent stunting in this and other comparable contexts. The protocol was approved by the República de Angola Ministério da Saúde Comité de Ética (27C.E/MINSA.INIS/2022). The findings of this study will be disseminated within academia and the wider policy sphere.

Trial registration number

ClinicalTrials.gov Registry (NCT05571280).

Exploring dietary perception, beliefs and practices among pregnant adolescents, their husbands and healthcare providers in West Arsi, Central Ethiopia: a phenomenological study

Por: Tesfaye · A. · Wondimagegne · Y. A. · Tamiru · D. · Belachew · T.
Background

The two most physically active stages of life, pregnancy and adolescence, put the pregnant adolescent under a lot of stress. Adolescence is a crucial era in women’s nutrition that is frequently overlooked.

Objective

This study aimed to explore dietary perceptions, beliefs and practices among pregnant Adolescents in West Arsi, Central Ethiopia.

Design

A qualitative method, specifically, a phenomenological research design, was carried out from February to March 2023.

Settings

This study was conducted in the West Arsi zone, Oromia, Ethiopia, in four randomly selected districts.

Participants

Thirty participants, 12 pregnant adolescents, 8 husbands of pregnant adolescents and 10 healthcare providers were purposefully selected and participated.

Methods

In-depth and key informant interviews were conducted. To create relevant codes, subthemes and themes, ATLAS.ti V.7.1 software was used. An inductive qualitative data analysis approach was used. The results were presented using respondents’ clear verbatim and thematic analysis.

Results

The findings were organised into four major themes: (1) low nutritional awareness, (2) poor dietary practice, (3) barriers to good dietary practice and (4) facilitators for good dietary practice. A low perceived severity (one’s belief of the seriousness) of undernutrition and low perceived benefits (one’s belief of the benefits) of balanced nutrition have been reported. A monotonous diet (one type food usually cereal based), no change in dietary practices during pregnancy, and low intake of animal food sources (meat, egg and milk) were found under dietary practices. One of the most striking findings to emerge from this study is the Alliance for Development (AFD), the former Women Development Army, which can be a great facilitator of good dietary practice. Husbands’ involvement in nutrition education and specific nutrition training for healthcare providers are the other facilitators identified in this study. The lack of nutrition education, misconceptions and economic problems are barriers to dietary practices.

Conclusion

This study found a low nutritional awareness and poor dietary practices. Further experimental studies are recommended to assess whether AFD is capable of delivering effective nutrition interventions that improve dietary practice of pregnant.

Feasibility of linking universal child and family healthcare and financial counselling: findings from the Australian Healthier Wealthier Families (HWF) mixed-methods study

Por: Price · A. M. H. · White · N. · Burley · J. · Zhu · A. · Contreras-Suarez · D. · Wang · S. · Stone · M. · Trotter · K. · Mrad · M. · Caldwell · J. · Bishop · R. · Chota · S. · Bui · L. · Sanger · D. · Roles · R. · Watts · A. · Samir · N. · Grace · R. · Raman · S. · Kemp · L. · Lingam · R. · Eape
Objectives

‘Healthier Wealthier Families’ (HWF) seeks to reduce financial hardship in the early years by embedding a referral pathway between Australia’s universal child and family health (CFH) services and financial counselling. This pilot study investigated the feasibility and short-term impacts of HWF, adapted from a successful Scottish initiative.

Methods

Setting: CFH services in five sites across two states, coinciding with the COVID-19 pandemic. Participants: Caregivers of children aged 0–5 years experiencing financial hardship (study-designed screen). Design: Mixed methods. With limited progress using a randomised trial (RCT) design in sites 1–3 (March 2020–November 2021), qualitative interviews with service providers identified implementation barriers including stigma, lack of knowledge of financial counselling, low financial literacy, research burden and pandemic disruption. This informed a simplified RCT protocol (site 4) and direct referral model (no randomisation, pre–post evaluation, site 5) (June 2021–May 2022). Intervention: financial counselling; comparator: usual care (sites 1–4). Feasibility measures: proportions of caregivers screened, enrolled, followed up and who accessed financial counselling. Impact measures: finances (quantitative) and other (qualitative) to 6 months post-enrolment.

Results

355/434 caregivers completed the screen (60%–100% across sites). In RCT sites (1–4), 79/365 (19%–41%) reported hardship but less than one-quarter enrolled. In site 5, n=66/69 (96%) caregivers reported hardship and 44/66 (67%) engaged with financial counselling; common issues were utility debts (73%), and obtaining entitlements (43%) or material aid/emergency relief (27%). Per family, financial counselling increased income from government entitlements by an average $A6504 annually plus $A784 from concessions, grants, brokerage and debt waivers. Caregivers described benefits (qualitative) including reduced stress, practical help, increased knowledge and empowerment.

Conclusions

Financial hardship screening via CFH was acceptable to caregivers, direct referral was feasible, but individual randomisation was infeasible. Larger-scale implementation will require careful, staged adaptations where CFH populations and the intervention are well matched and low burden evaluation.

Trial registration number

ACTRN12620000154909.

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