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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: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.

Project description:BackgroundThe concept of "intersectionality" is increasingly employed within public health arenas, particularly in North America, and is often heralded as offering great potential to advance health inequalities research and action. Given persistently poor progress towards tackling health inequalities, and recent calls to reframe this agenda in the United Kingdom and Europe, the possible contribution of intersectionality deserves attention. Yet, no existing research has examined professional stakeholder understandings and perspectives on applying intersectionality to this field.MethodsIn this paper we seek to address that gap, drawing upon a consultation survey and face-to-face workshop (n = 23) undertaken in the United Kingdom. The survey included both researchers (n = 53) and policy and practice professionals (n = 20) with varied roles and levels of engagement in research and evaluation. Topics included familiarity with the term and concept "intersectionality", relevance to health inequalities work, and issues shaping its uptake. Respondents were also asked to comment on two specific policy suggestions: intersectionally targeting and tailoring interventions, and evaluating the intersectional effects of policies. The workshop aims were to share examples of applying intersectionality within health inequalities research and practice; understand the views of research and practice colleagues on potential contributions and challenges; and identify potential ways to promote intersectional approaches.ResultsFindings indicated a generally positive response to the concept and a cautiously optimistic assessment that intersectional approaches could be valuable. However, opinions were mixed and various challenges were raised, especially around whether intersectionality research is necessarily critical and transformative and, accordingly, how it should be operationalized methodologically. Nonetheless, there was general agreement that intersectionality is concerned with diverse inequalities and the systems of power that shape them.ConclusionsWe position intersectionality within the wider context of health inequalities policy and practice, suggesting potential ways forward for the approach in the context of the United Kingdom. The views of policy and practice professionals suggest that intersectionality has far to travel to help counter individualistic narratives and to encourage an approach that is sensitive to subgroup inequalities and the processes that generate them. Examples of promising practice, albeit mostly in North America, suggest that it is possible for intersectionality to gain traction.

Project description:BackgroundLebanon boosts one of the highest pharmacists to population ratios globally (20.3/10,000). Yet, workforce analysis elicited serious concerns with the distribution, practice environments and regulation of Lebanese pharmacists. Recent workforce data shows that the profession has been majorly destabilized with hundreds of pharmacists closing their pharmacies or losing their employment. Proper planning for the future of the pharmacy profession in Lebanon necessitates a deeper understanding of the current challenges and the necessary policy and practice recommendations. The aim of this study is to examine stakeholders' perspectives on the current pharmacist workforce challenges and the necessary measures to support the profession.MethodsThe research team carried out a series of semi-structured interviews with twenty-one key stakeholders within the pharmacy profession in Lebanon. We categorized stakeholders according to their experience as policy makers, practitioners, academicians, and media experts. The interview guide included questions about workforce trends, labor market challenges and recommendations for improvement. Interviews were transcribed and analyzed thematically.ResultsFour major themes emerged from this study: the oversupply of pharmacists in Lebanon, the demand supply imbalance, poor regulation of the pharmacy practice, and the difficult practice environment. There was a consensus among interviewees that the oversupply of pharmacists is due to the poor workforce planning and weak regulatory framework, combined with the easy integration of foreign-trained pharmacists into the labor market. The lack of coordination between the educational and practice sectors is further widening the demand-supply gap. Interviewees further revealed that the regulatory policies on pharmacy practice were outdated and/or weakly enforced which increases the risk of unethical practices and erodes the image of pharmacists in the society. With respect to the practice environment, there is an ongoing struggle by Lebanese pharmacists to maintain profitability and exercise their full scope of practice.ConclusionThe poor pharmacy workforce planning and regulation is significantly weakening the pharmacy profession in Lebanon. A concerted effort between the various stakeholders is necessary to enhance workforce planning, regulate supply, optimize the integration of pharmacists into work sectors of need, and improve the financial and professional wellbeing of pharmacists in Lebanon.

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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