Abortion provision in Northern Ireland: the views of health professionals working in obstetrics and gynaecology units

IntroductionAbortion became decriminalised in Northern Ireland in October 2019. Until that point there existed no evidence concerning the views of health professionals on decriminalisation or on their willingness to be involved in abortion care. The purpose of this study was to address this lack of evidence, including all categories of health professionals working in obstetrics and gynaecology units in Northern Ireland.MethodsThe online survey was targeted at medical, nursing and midwifery staff working in the obstetrics and gynaecology units in each Health and Social Care (HSC) Trust in Northern Ireland. The survey was issued via clinical directors in each Trust using the REDCap platform.ResultsThe findings showed widespread support for decriminalisation of abortion up until 24 weeks’ gestation (n=169, 54%). The majority of clinicians stated they were willing to provide abortions in certain circumstances (which were undefined) (n=188, 60% medical abortions; n=157, 50% surgical abortions). Despite regional variation, the results show that there are sufficient numbers of clinicians to provide a service within each HSC Trust. The results indicate that many clinicians who report a religious affiliation are also supportive of decriminalisation (n=46, 51% Catholic; n=53, 45% Protestant) and are willing to provide care, countering the assumption that those of faith would all raise conscientious objections to service provision.ConclusionsThe findings of this study are very encouraging for the development, implementation and delivery of local abortion care within HSC Trusts in Northern Ireland and should be of value in informing commissioners and providers about the design of a service model and its underpinning training programmes.

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Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01559-6 ◽

2020 ◽

Vol 15 (1) ◽

Author(s):

Julie McMullan ◽

Ashleen L. Crowe ◽

Caitlin Bailie ◽

Kerry Moore ◽

Lauren S. McMullan ◽

...

Keyword(s):

Northern Ireland ◽

Rare Disease ◽

Rare Diseases ◽

Health Professionals ◽

Online Survey ◽

Essential Element ◽

Future Research ◽

Structured Interviews ◽

Collaborative Groups ◽

Related Information

Abstract Background Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018–2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI). Methods This study had 2 stages. Stage 1 was an online survey and stage 2 involved semi-structured interviews both with rare disease collaborative groups in Northern Ireland. The surveys and interviews were used to locate existing resources as well as identify gaps where the development of further resources would be appropriate. Results Ninety-nine rare disease collaborative groups engaged with the survey with 31 providing detailed answers. Resources such as information, communication, ‘registries’, online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective information and communication, training for health professionals, online presence, support for carers, and involvement in research. Conclusions All rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs, and suggests approaches to improve rare disease support.

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Good communication is critical to supporting people living and working with a rare disease: current rare disease support perceived as inadequate

10.1101/2020.05.22.20110056 ◽

2020 ◽

Author(s):

Julie McMullan ◽

Ashleen L. Crowe ◽

Caitlin Bailie ◽

Kerry Moore ◽

Lauren S. McMullan ◽

...

Keyword(s):

Northern Ireland ◽

Rare Disease ◽

Rare Diseases ◽

Health Professionals ◽

Online Survey ◽

Essential Element ◽

Future Research ◽

Structured Interviews ◽

Collaborative Groups ◽

Information And Communication

AbstractBackgroundMany people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018-2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI).ResultsNinety-nine participants engaged with the survey with 31 respondents providing detailed answers. Resources such as information, communication, ‘registries’, online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective: information and communication, training for health professionals, online presence, support for carers, and involvement in research.ConclusionsAll rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. Due to the unique role a carer has in the life of a person with a rare disease it is vital that their voice is heard and their needs are listened to. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs in service provision, and suggests approaches to improve rare disease support prioritising improved information and communication provision, improved access to services, and tailored support for carers of people with a rare disease.

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AB1335-HPR HEALTH PROFESSIONALS’ PERSPECTIVE ON THE BENEFITS AND RISKS OF LOW-DOSE GLUCOCORTICOIDS IN RHEUMATOID ARTHRITIS – AN INTERNATIONAL SURVEY OF 444 HEALTH PROFESSIONALS

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.3277 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 1955.1-1956

Author(s):

T. Santiago ◽

M. Voshaar ◽

M. De Wit ◽

P. Carvalho ◽

M. Boers ◽

...

Keyword(s):

Rheumatoid Arthritis ◽

Adverse Events ◽

Health Professionals ◽

Patient Perspective ◽

Online Survey ◽

Low Dose ◽

Low Doses ◽

Research Support ◽

Serious Adverse Events ◽

Patient Organizations

Background:The Glucocorticoid Low-dose Outcome in Rheumatoid Arthritis Study (GLORIA) is an international investigator-initiated pragmatic randomized trial designed to study the effects of low-dose glucocorticoids (GCs) in elderly patients with Rheumatoid Arthritis (RA).The research team is also committed to promote a better understanding of the risks and benefits of these drugs among health professionals and patients. In order to achieve these goals, it is important to assess the current ideas and concerns of patients regarding GCs.Objectives:To evaluate the current patient perspective on the efficacy and risks of GCs in RA patients who are or have been treated with GCs.Methods:Patients with RA completed an online survey (with 5 closed questions regarding efficacy and safety) presented in their native language. RA patients were recruited through a variety of patient organizations representing three continents. Patients were invited to participate through national patient organizations. In the USA, patients were also invited to participate through MediGuard.org. Participants were asked for their level of agreement on a 5-point Likert scale.Results:1344 RA patients with exposure to GCs, from Brazil, USA, UK, Portugal, Netherlands, Germany and 24 other countries** participated: 89% female, mean age (SD) 52 (14) years and mean disease duration 13 (11) years. The majority of participants (84%) had ≥10 years of education. The duration of GCs exposure was 1.6 (4.2) years. The majority of participants had read articles or pamphlets on the benefits or harms of GC therapy.Regarding GCs efficacy (table 1), high levels of endorsement were found: about 2/3 of patients considered that GCs as very useful in their case, more than half considered that GCs were effective even at low doses, and agreed that GC improved RA symptoms within days.Regarding safety (table 1), 1/3 of the participants reported having suffered some form of serious adverse events (AEs) due to GCs, and 9% perceived this as “life-threatening. Adverse events had a serious impact on quality of life, according to about 1/3 of the respondents.Conclusion:Patients with RA exposed to GC report a strong conviction that GCs are very useful and effective for the treatment of their RA, even at low doses. This is accompanied by an important prevalence of serious AEs. Understanding the patient perspective can improve shared decision-making between patient and rheumatologist.Funding statement:This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 634886.Disclosure of Interests:Tânia Santiago: None declared, Marieke Voshaar Grant/research support from: part of phd research, Speakers bureau: conducting a workshop (Pfizer), Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Pedro Carvalho: None declared, Maarten Boers: None declared, Maurizio Cutolo Grant/research support from: Bristol-Myers Squibb, Actelion, Celgene, Consultant of: Bristol-Myers Squibb, Speakers bureau: Sigma-Alpha, Frank Buttgereit Grant/research support from: Amgen, BMS, Celgene, Generic Assays, GSK, Hexal, Horizon, Lilly, medac, Mundipharma, Novartis, Pfizer, Roche, and Sanofi., José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis

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Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study

BMJ Open ◽

10.1136/bmjopen-2020-039939 ◽

2021 ◽

Vol 11 (1) ◽

pp. e039939

Author(s):

Sahdia Parveen ◽

Sarah Jane Smith ◽

Cara Sass ◽

Jan R Oyebode ◽

Andrea Capstick ◽

...

Keyword(s):

Online Survey ◽

Social Care ◽

Education And Training ◽

Care Staff ◽

Cross Sectional ◽

Health And Social Care ◽

Training Content ◽

The Impact ◽

And Training ◽

Dementia Education

ObjectivesThe aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training.DesignCross-sectional survey study. Data collection occurred in 2017.SettingsHealth and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes.ParticipantsAll health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%).OutcomesKnowledge, attitude and confidence of health and social care staff.ResultsHierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01).ConclusionThe results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.

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Older and Wiser? The Need to Reexamine the Impact of Health Professionals Age and Experience on Competency-Based Practices

SAGE Open Nursing ◽

10.1177/23779608211029067 ◽

2021 ◽

Vol 7 ◽

pp. 237796082110290

Author(s):

Jing Xu ◽

Kristen Hicks-Roof ◽

Chloe E. Bailey ◽

Hanadi Y. Hamadi

Keyword(s):

Health Professionals ◽

Online Survey ◽

Evidence Based Practice ◽

Core Competencies ◽

Healthcare Services ◽

Interdisciplinary Teams ◽

Evidence Based ◽

Health Providers ◽

Cross Sectional ◽

The Impact

Introduction Delivery of healthcare services makes up a complex system and it requires providers to be competent and to be able to integrate each of the institute of medicine’s (IOM) 5 core competencies into practice. However, healthcare providers are challenged with the task to be able to understand and apply the IOM core competencies into practice. Objective The purpose of the study was to examine the factors that influence health professional’s likelihood of accomplishing the IOM core competencies. Methods A cross-sectional study design was used to administer a validated online survey to health providers. This survey was distributed to physicians, nursing professionals, specialists, and allied healthcare professionals. The final sample included 3,940 participants who completed the survey. Results The study findings show that younger health professionals more consistently practice daily competencies than their older counterparts, especially in the use of evidence-based practice, informatics, and working in interdisciplinary teams. Less experienced health professionals more consistently applied quality improvement methods but less consistently used evidence-based practice compared to their more experienced counterparts. Conclusion There is a need to understand how health professionals’ age and experience impact their engagement with IOM’s core competencies. This study highlights the need for educational resources on the competencies to be tailored to health providers’ age and experience.

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Abortion attempts without clinical supervision among transgender, nonbinary and gender-expansive people in the United States

BMJ Sexual & Reproductive Health ◽

10.1136/bmjsrh-2020-200966 ◽

2021 ◽

pp. bmjsrh-2020-200966

Author(s):

Heidi Moseson ◽

Laura Fix ◽

Caitlin Gerdts ◽

Sachiko Ragosta ◽

Jen Hastings ◽

...

Keyword(s):

United States ◽

Clinical Supervision ◽

Online Survey ◽

Clinical Care ◽

Insurance Coverage ◽

Health Insurance Coverage ◽

The United States ◽

Physical Trauma ◽

Abortion Care ◽

And Gender

BackgroundTransgender, nonbinary and gender-expansive (TGE) people face barriers to abortion care and may consider abortion without clinical supervision.MethodsIn 2019, we recruited participants for an online survey about sexual and reproductive health. Eligible participants were TGE people assigned female or intersex at birth, 18 years and older, from across the United States, and recruited through The PRIDE Study or via online and in-person postings.ResultsOf 1694 TGE participants, 76 people (36% of those ever pregnant) reported considering trying to end a pregnancy on their own without clinical supervision, and a subset of these (n=40; 19% of those ever pregnant) reported attempting to do so. Methods fell into four broad categories: herbs (n=15, 38%), physical trauma (n=10, 25%), vitamin C (n=8, 20%) and substance use (n=7, 18%). Reasons given for abortion without clinical supervision ranged from perceived efficiency and desire for privacy, to structural issues including a lack of health insurance coverage, legal restrictions, denials of or mistreatment within clinical care, and cost.ConclusionsThese data highlight a high proportion of sampled TGE people who have attempted abortion without clinical supervision. This could reflect formidable barriers to facility-based abortion care as well as a strong desire for privacy and autonomy in the abortion process. Efforts are needed to connect TGE people with information on safe and effective methods of self-managed abortion and to dismantle barriers to clinical abortion care so that TGE people may freely choose a safe, effective abortion in either setting.

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Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol

BMJ Open ◽

10.1136/bmjopen-2020-043358 ◽

2021 ◽

Vol 11 (3) ◽

pp. e043358

Author(s):

Angela Hassiotis ◽

Athanasia Kouroupa ◽

Rebecca Jones ◽

Nicola Morant ◽

Ken Courtenay ◽

...

Keyword(s):

Quality Of Life ◽

Cost Effectiveness ◽

Intellectual Disabilities ◽

Online Survey ◽

Service Use ◽

Cost Evaluation ◽

Challenging Behaviour ◽

Health And Social Care ◽

Adults With Intellectual Disabilities

IntroductionApproximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysisA cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and disseminationThe study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms.Trial registration numberClinicalTrials.gov Registry (NCT03586375).

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I. The Northern Ireland Peace Agreement, Minority Rights and Self-Determination

International and Comparative Law Quarterly ◽

10.1017/s002058930006262x ◽

1998 ◽

Vol 47 (4) ◽

pp. 943-950 ◽

Cited By ~ 1

Author(s):

Colin Warbrick ◽

Dominic McGoldrick ◽

Geoff Gilbert

Keyword(s):

Northern Ireland ◽

Minority Groups ◽

Religious Affiliation ◽

Holistic Approach ◽

Minority Rights ◽

The Other ◽

Self Determination ◽

Peace Agreement ◽

The Troubles ◽

The Right

The Northern Ireland Peace Agreement1 was concluded following multi-party negotiations on Good Friday, 10 April 1998. It received 71 per cent approval in Northern Ireland and 95 per cent approval in the Republic of Ireland in the subsequent referenda held on Friday 22 May, the day after Ascension. To some, it must have seemed that the timing was singularly appropriate following 30 years of “The Troubles”, which were perceived as being between a “Catholic minority” and a “Protestant majority”. While there are some minority groups identified by their religious affiliation that do require rights relating only to their religion, such as the right to worship in community,2 to practise and profess their religion,3 to legal recognition as a church,4 to hold property5 and to determine its own membership,6 some minority groups identified by their religious affiliation are properly national or ethnic minorities–religion is merely one factor which distinguishes them from the other groups, including the majority, in the population. One example of the latter situation is to be seen in (Northern) Ireland where there is, in fact, untypically, a double minority: the Catholic-nationalist community is a minority in Northern Ireland, but the Protestant-unionist population is a minority in the island of Ireland as a whole.7 The territory of Northern Ireland is geographically separate from the rest of the United Kingdom. The recent peace agreement addresses a whole range of issues for Northern Ireland, but included are, on the one hand, rights for the populations based on their religious affiliation, their culture and their language and, on the other, rights with respect to their political participation up to the point of external self-determination. It is a holistic approach. Like any good minority rights agreement,8 it deals with both standards and their implementation and, like any good minority rights agreement, it is not a minority rights agreement but, rather, a peace settlement.

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A mixed methods evaluation of the Paediatric Musculoskeletal Matters (PMM) online portfolio

Pediatric Rheumatology ◽

10.1186/s12969-021-00567-5 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Nicola Smith ◽

Helen E. Foster ◽

Sharmila Jandial

Keyword(s):

Mixed Methods ◽

Health Care Professionals ◽

Online Survey ◽

User Feedback ◽

User Engagement ◽

Allied Health Professionals ◽

Clinical Images ◽

Survey Interviews ◽

Training Programmes ◽

Method Of Evaluation

Abstract Background The PMM Portfolio is comprised of the Paediatric Musculoskeletal Matters (PMM) website, the paediatric Gait, Arms, Legs and Spine (pGALS) app and e-learning modules (ELM). The target audiences are non-specialists in paediatric musculoskeletal medicine. Our study aimed to evaluate impact on learning and clinical practice. Methods Mixed methods (analytics, online survey, interviews) were used with PMM and ELM registered users and purposive sampling of users using international contacts within paediatrics and paediatric rheumatology. Data was analysed using descriptive statistics and qualitative techniques. A Paired T-Test compared self-rated confidence before and after use of the PMM Portfolio. Results There has been wide reach for all the e-resources; PMM website (662,827 hits, 262,476 users, 214 countries, data 31st July 2020); pGALS app (12,670 downloads, 70 countries, data 31st July 2020); ELM (150 users, 30 countries, data 30th May 2019). There were 164 responses (students, trainees and health care professionals) to the survey from 25 countries. Most responders deemed the PMM Portfolio useful / very useful for their learning with significantly increased self-rated confidence in their clinical examination and reasoning skills following access to the PMM website, p = < 0.01, pGALS app, p = < 0.01 and ELM, p = < 0.01. The most popular PMM website pages related to clinical assessment techniques (especially pGALS). There was high uptake of the pGALS app and pGALS ELM especially from trainees and allied health professionals. Many clinicians reported the PMM Portfolio to be useful when used to teach others. User feedback reported that easy navigation, open access, clinical images and cases were the most valued features. User feedback highlighted need to increase awareness of the e-resources through training programmes. Conclusions The PMM Portfolio was developed to aid learning for clinicians who are not specialists in paediatric MSK medicine. Our evaluation demonstrates wide international reach and positive feedback on learning. The PMM Portfolio is a highly useful e-resource for paediatric rheumatologists in their teaching of others to raise awareness, facilitate early diagnosis and referral of children with suspected disease. The wide user engagement informed future PMM Portfolio development and the mixed method of evaluation is transferable to other e-resources.

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The Impact of Risk Factors for Coronary Heart Disease on Related Disability in Older Irish Adults

Journal of Aging and Health ◽

10.1177/0898264317726242 ◽

2017 ◽

Vol 31 (1) ◽

pp. 165-184 ◽

Cited By ~ 1

Author(s):

Sharon M. Cruise ◽

John Hughes ◽

Kathleen Bennett ◽

Anne Kouvonen ◽

Frank Kee

Keyword(s):

Risk Factors ◽

Coronary Heart Disease ◽

Heart Disease ◽

Northern Ireland ◽

Physical Inactivity ◽

Relative Risks ◽

Chd Risk ◽

Health And Social Care ◽

Chd Risk Factors ◽

The Impact

Objective: The aim of this study is to examine the prevalence of coronary heart disease (CHD)–related disability (hereafter also “disability”) and the impact of CHD risk factors on disability in older adults in the Republic of Ireland (ROI) and Northern Ireland (NI). Method: Population attributable fractions were calculated using risk factor relative risks and disability prevalence derived from The Irish Longitudinal Study on Ageing and the Northern Ireland Health Survey. Results: Disability was significantly lower in ROI (4.1% vs. 8.8%). Smoking and diabetes prevalence rates, and the fraction of disability that could be attributed to smoking (ROI: 6.6%; NI: 6.1%), obesity (ROI: 13.8%; NI: 11.3%), and diabetes (ROI: 6.2%; NI: 7.2%), were comparable in both countries. Physical inactivity (31.3% vs. 54.8%) and depression (10.2% vs. 17.6%) were lower in ROI. Disability attributable to depression (ROI: 16.3%; NI: 25.2%) and physical inactivity (ROI: 27.5%; NI: 39.9%) was lower in ROI. Discussion: Country-specific similarities and differences in the prevalence of disability and associated risk factors will inform public health and social care policy in both countries.

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