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Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholders.

ABSTRACT: Background:Women with autoimmune rheumatic diseases (ARDs) find it difficult to get information and support with family planning, pregnancy, and early parenting. A systematic approach to prioritising research is required to accelerate development and evaluation of interventions to meet the complex needs of this population. Methods:A Nominal Group Technique (NGT) exercise was carried out with lay and professional stakeholders (n=29). Stakeholders were prepared for debate through presentation of available evidence. Stakeholders completed three tasks to develop, individually rank, and reach consensus on research priorities: Task 1 - mapping challenges and services using visual timelines; Task 2 - identifying research topics; Task 3 - individually ranking research topics in priority order. Results of the ranking exercise were fed back to the group for comment. Results:The main themes emerging from Task 1 were the need for provision of information, multi-disciplinary care, and social and peer support. In Task 2, 15 research topics and 58 sub-topics were identified around addressing the challenges and gaps in care identified during Task 1. In Task 3, a consensus was reached on the ten research topics that should be given the highest priority. These were individually ranked, resulting in the following order of priorities (from 1 - highest to 10 - lowest): 1. Shared decision-making early in the care pathway; 2. Pre-conception counseling; 3. Information about medication use during pregnancy/breastfeeding; 4. Personalised care planning; 5. Support for partners/family members; 6. Information about local support/disease specific issues; 7. Shared decision-making across the care pathway; 8. Peer-support; 9. Social inequalities in care, and; 10. Guidance on holistic/alternative therapies. Conclusions:This systematic approach to identification of research priorities from a multi-disciplinary and lay perspective indicated that activities should focus on development and evaluation of interventions that increase patient involvement in clinical decision-making, multi-disciplinary models of care, and timely provision of information.

SUBMITTER: Phillips R

PROVIDER: S-EPMC6092904 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholders.

Phillips Rhiannon R Williams Denitza D Bowen Daniel D Morris Delyth D Grant Aimee A Pell Bethan B Sanders Julia J Taylor Ann A Choy Ernest E Edwards Adrian A

Wellcome open research 20180620

<b>Background:</b>Women with autoimmune rheumatic diseases (ARDs) find it difficult to get information and support with family planning, pregnancy, and early parenting. A systematic approach to prioritising research is required to accelerate development and evaluation of interventions to meet the complex needs of this population. <b>Methods:</b>A Nominal Group Technique (NGT) exercise was carried out with lay and professional stakeholders (n=29). Stakeholders were prepared for debate through pr ...[more]

PMID: 30191184

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Project description:BackgroundThere currently are no mandatory vaccines in Switzerland. However, Swiss federal legislation allows for vaccination mandates in settings where the risk of transmission to vulnerable groups is high, such as healthcare professionals (HCPs) working with vulnerable patients. Since HCPs are trusted information sources, a priority population for COVID-19 vaccination, and potentially subjected to mandates, we investigated HCP perspectives on mandates.MethodsA national online survey was administered to HCPs (October 2020-March 2021), including vaccine mandates questions concerning patients (measles) and HCPs (influenza). We qualitatively investigated HCP mandate perspectives through: (1) 34 interviews with HCPs, HCP professional society representatives, and health authorities; (2) a focus group discussion (FGD) with complementary medicine (CM) and biomedical physicians, and Swiss Federal Vaccination Commission members.Results1933 participants (496 physicians, 226 pharmacists, 607 nurses, 604 midwives) responded to the survey. Quantitative results show all professional groups preferred shared parent-HCP measles vaccine decisions (65%, 54%, 50%, 48%, respectively; p for trend < 0.001). Midwives (87%) and nurses (70%) preferred individual influenza vaccination decisions for HCPs, while physicians (49%) and pharmacists (44%) preferred shared employee-employer decisions (p for trend < 0.001). Physicians (p < .001) and pharmacists (p < .01) with CM training favored individual influenza vaccination decisions. Qualitative results show general HCP opposition to vaccine mandates, mainly because participants argued how other approaches, such as HCP training and better information, could encourage uptake. Arguments against COVID-19 mandates included insufficiently documented long-term safety/efficacy data. From participants' perspectives, mandated vaccination should be used as a last resort. Some participants expressed fear that with mandates, notably for influenza and COVID-19, some HCPs might leave their jobs. HCPs were unsure what vaccine mandates would concretely look like in practice, particularly regarding sanctions for non-compliance and enforcement.ConclusionIn Switzerland, HCPs generally were opposed to vaccination mandates. Clarity and guidance are needed from health authorities to better inform discussions around vaccine mandates.

Project description:BackgroundThe Veterans Access Research Consortium (VARC), a Department of Veterans Affairs (VA) Consortium of Research focused on access to healthcare, has been funded by VA's Health Services Research and Development Service (HSR&D) to develop a research roadmap for healthcare access. The goal of the roadmap is to identify operationally aligned research questions that are most likely to lead to meaningful improvements in Veterans' healthcare access.ObjectivesTo describe the process of soliciting diverse stakeholder perspectives about key priorities on which VA's HSR&D access agenda should focus and identify the results of that process.MethodsWe used a modified Delphi approach to engage researchers and VA operational partners in a process to develop recommendations regarding the access-related research questions VA should prioritize. We then collaborated with three Veteran Engagement Groups (VEGs) across the country to solicit Veterans' reactions to the Delphi results and their perspectives about access-related issues affecting access to VA health care.ResultsThe Delphi panel consisted of 22 research and operational experts, both internal and external to VA. The Delphi process resulted in five research questions identified by the panelists as highest priority for VA to pursue, each representing one of the following domains: (1) measurement of access, (2) barriers to access, (3) equity and subpopulations, (4) effective interventions to improve access, and (5) consequences of poor/better access. Veterans' perspectives focused primarily on the barriers to access domain. Veterans indicated several barriers that might be addressed through research or operational initiatives, including poor communication about services, weak connections to and partnerships with local community care facilities, and poor provision of telehealth resources and education.ConclusionsEngaging multiple methods to solicit stakeholder perspectives enables more nuanced understanding of access-related priorities for VA. Future research should consider utilizing such an approach to identify additional research and/or operational priorities.

Project description:Rheumatic heart disease (RHD) is a chronic disease affecting the heart valves, secondary to group A streptococcal infection (GAS) and subsequent acute rheumatic fever (ARF). However, RHD cure and preventative measures are inextricably linked with socioeconomic development, as the disease mainly affects children and young adults living in poverty. In order to address RHD, public health officials and health policymakers require up-to-date knowledge on the epidemiology of GAS, ARF and RHD, as well as the existing enablers and gaps in delivery of evidence-based care for these conditions. We propose to conduct a systematic review to assess the literature comprehensively, synthesising all existing quantitative and qualitative data relating to RHD in Africa.We plan to conduct a comprehensive literature search using a number of databases and reference lists of relevant articles published from January 1995 to December 2015. Two evaluators will independently review and extract data from each article. Additionally, we will assess overall study quality and risk of bias, using the Newcastle-Ottawa Scale and the Critical Appraisal Skills Programme criteria for quantitative and qualitative studies, respectively. We will meta-analyse estimates of prevalence, incidence, case fatality and mortality for each of the conditions separately for each country. Qualitative meta-analysis will be conducted for facilitators and barriers in RHD health access. Lastly, we will create a list of key stakeholders. This protocol is registered in the PROSPERO International Prospective Register of systematic reviews, registration number CRD42016032852.The information provided by this review will inform and assist relevant stakeholders in identifying key areas of intervention, and designing and implementing evidence-based programmes and policies at the local and regional level. With slight modifications (ie, to the country terms in the search strategy), this protocol can be used as part of a needs assessment in any endemic country.

Project description:OBJECTIVE:To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). SETTING:International. PARTICIPANTS:We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). DESIGN:Survey. METHODS:We invited people to submit their research ideas via an online survey open for 4?weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. RESULTS:Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. CONCLUSIONS:Consumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals' communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

Dataset Information

Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholders.

Publications

Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholders.

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