"It felt like I had an old fashioned telephone ringing in my breasts": An online survey of UK Autistic birthing parents' experiences of infant feeding.

Around 3% of people are Autistic. Autistic people communicate differently from non-Autistic people and experience the sensory world differently. There is limited evidence that Autistic people can face additional barriers to breastfeeding. We are an Autistic-led research team that developed an online survey following consultation with the Autistic community. Autistic people from the UK who had been pregnant were eligible to take part in the survey, which focused on the entire maternity journey. A total of 193 people participated, of whom 152 had experiences of infant feeding (137 breastfeeding, 82 formula feeding). Participants were highly motivated to breastfeed, and almost half of those who breastfed found it positive always or most of the time. However, breastfeeding-and in particular the milk let-down reflex-could result in pain and sensory difficulties, including 'feeling odd'. Expressing breastmilk always or most of the time was reported by 10% of breastfeeding participants. The intensity and unpredictability of both breast and formula feeding were challenging to manage. Parents reported that it was easy to understand how to prepare infant formula, but that it could also be a negative and anxiety-inducing experience. Support for breast and formula feeding was often considered inadequate. When parents did access breastfeeding support, this significantly improved a range of breastfeeding experiences. However, participants recommended more tailored support and continuity of carer. To meet the needs of Autistic birthing parents, those providing infant feeding support should receive training on Autism through a neurodiversity-affirming lens, which should be delivered by Autistic people.

The safety of at home powdered infant formula preparation: A community science project.

Formula fed infants experience gastrointestinal infections at higher rates than breastfed infants, due in part to bacteria in powdered infant formula (PIF) and bacterial contamination of infant feeding equipment. The United Kingdom National Health Service (UK NHS) has adopted the World Health Organization recommendation that water used to reconstitute PIF is ≥70°C to eliminate bacteria. We used community science methods to co-design an at home experiment and online questionnaire ('research diary') to explore the safety of PIF preparation compared to UK NHS guidelines. 200 UK-based parents of infants aged ≤12 months were recruited; 151 provided data on PIF preparation, and 143 were included in the analysis of water temperatures used to reconstitute PIF. Only 14.9% (n = 11) of 74 PIF preparation machines produced a water temperature of ≥70°C compared with 78.3% (n = 54) of 69 kettle users (p < 0.001). The mean temperature of water dispensed by PIF preparation machines was 9°C lower than kettles (Machine M = 65.78°C, Kettle M = 75.29°C). Many parents did not always fully follow NHS safer PIF preparation guidance, and parents did not appear to understand the potential risks of PIF bacterial contamination. Parents should be advised that the water dispensed by PIF preparation machines may be below 70°C, and could result in bacteria remaining in infant formula, potentially leading to gastrointestinal infections. PIF labelling should advise that water used to prepare PIF should be ≥70°C and highight the risks of not using sufficiently hot water, per WHO Europe advice. There is an urgent need for stronger consumer protections regarding PIF preparation devices.

Breastfeeding sick children in hospital: Exploring the experiences of mothers in UK paediatric wards.

There is a paucity of literature exploring the challenges of breastfeeding sick children in hospital. Previous research has focused on single conditions and hospitals which limits understanding of the challenges in this population. Although evidence suggests that current lactation training in paediatrics is often inadequate, it is unclear where the specific training gaps are. This qualitative interview study of UK mothers aimed to explore the challenges of breastfeeding sick infants and children on a paediatric ward or paediatric intensive care unit. From 504 eligible respondents, a sample of 30 mothers of children aged 2-36 months with various conditions and demographic backgrounds was purposively chosen, and a reflexive thematic analysis undertaken. The study identified previously unreported impacts such as complex fluid needs, iatrogenic withdrawal, neurological irritability and changes to breastfeeding behaviour. Mothers described breastfeeding as emotionally and immunologically meaningful. There were many complex psychological challenges such as guilt, disempowerment, and trauma. Wider struggles such as staff resistance to bedsharing, inaccurate breastfeeding information, lack of food and inadequate breast pump provision made breastfeeding more challenging. There are numerous challenges related to breastfeeding and responsively parenting sick children in paediatrics, and these also impacted maternal mental health. Staff skill and knowledge gaps were widespread, and the clinical environment was not always conducive to supporting breastfeeding. This study highlights strengths in clinical care and provides insight into what measures are perceived as supportive by mothers. It also highlights areas for improvement, which may inform more nuanced paediatric breastfeeding standards and training.

Views and experience of breastfeeding in public: A qualitative systematic review.

Breastfeeding rates in many Global North countries are low. Qualitative research highlights that breastfeeding in public is a particular challenge, despite mothers often having the legal right to do so. To identify barriers and facilitators, we systematically searched the qualitative research from Organisation for Economic Co-operation and Development countries relating to breastfeeding in public spaces from 2007 to 2021. Data were analysed using the Thematic Synthesis technique. The review was registered with PROSPERO (registration number: CRD42017081504). Database searching identified 3570 unique records. In total, 74 papers, theses, or book chapters, relating to 71 studies, were included, accounting for over 17,000 mothers. Overall, data quality was high. Our analysis identified that five core factors influenced mothers' thought processes and their breastfeeding in public behaviour: legal system; structural (in)equality; knowledge; beliefs and the social environment. Macro-level factors relating to legislation and inequality urgently require redress if breastfeeding rates are to be increased. Widespread culture change is also required to enhance knowledge, change hostile beliefs and thus the social environment in which mother/infant dyads exist. In particular, the sexualisation of breasts, disgust narratives and lack of exposure among observers to baby-led infant feeding patterns resulted in beliefs which created a stigmatising environment. In this context, many mothers felt unable to breastfeed in public; those who breastfed outside the home were usually highly self-aware, attempting to reduce their exposure to conflict. Evidence-based theoretically informed interventions to remove barriers to breastfeeding in public are urgently required.

An 'incredible community' or 'disgusting' and 'weird'? Representations of breastmilk sharing in worldwide news media.

Breastmilk sharing via the internet has become more popular in recent years, with a resultant increase in media attention. It is actively discouraged by public health bodies in at least three countries. We undertook a qualitative analysis of worldwide English language news media (online newspaper articles and transcripts of television and radio pieces) focusing on peer-to-peer breastmilk sharing during a 24-month period (2015-2016). One hundred eleven news articles were analysed semiotically for positive (n = 49) and negative (n = 90) depictions of breastmilk sharing and the actors involved. Three countries published the majority of the articles: United States (n = 42), United Kingdom (n = 24) and Australia (n = 20). Topics associated with using shared breastmilk included perceived insufficiency, having surgery or taking medication, or the prematurity of the baby. Reports of women who gave and received breastmilk were largely positive although sometimes confused with women who sell breastmilk, who were demonised. The breastmilk itself, however, was considered as potentially contaminated and possibly dangerous; calls for action (n = 33) focused on increasing regulation and safety. Peer-to-peer milk sharing and the commercial availability of human milk are activities that occur within social and cultural contexts, and, as such, the ways in which they are represented in the news media reflect the ways in which they are also represented more widely in society. Increased understanding of normal infant feeding practices is needed, alongside guidance on how to better support breastfeeding. News media outlets can facilitate this through reporting risk in line with evidence. Further research should be undertaken to understand the safety of breastmilk sharing and the experience of those who participate.

Understanding health behaviour in pregnancy and infant feeding intentions in low-income women from the UK through qualitative visual methods and application to the COM-B (Capability, Opportunity, Motivation-Behaviour) model.

BACKGROUND: Health behaviours during pregnancy and the early years of life have been proven to affect long term health, resulting in investment in interventions. However, interventions often have low levels of completion and limited effectiveness. Consequently, it is increasingly important for interventions to be based on both behaviour change theories and techniques, and the accounts of pregnant women. This study engaged with pregnant women from deprived communities, to understand their subjective experiences of health in pregnancy. METHODS: The study adopted a women-centred ethos and recruited a purposive sample of ten pregnant women, who lived in deprived areas and were on low incomes. Participants engaged with three creative techniques of visual data production (timelines, collaging and dyad sandboxing), followed by elicitation interviews. One participant only engaged in the initial activity and interview, resulting in a total of 28 elicitation interviews. This in-depth qualitative approach was designed to enable a nuanced account of the participants' thoughts, everyday experiences and social relationships. Data were deductively coded for alcohol, smoking and infant feeding and then mapped to the COM-B model (Capability, Opportunity, Motivation - Behaviour). RESULTS: Five participants had experience of smoking during pregnancy, four had consumed alcohol during pregnancy, and all participants, except one who had exclusively formula fed her child, disclosed a range of infant feeding experiences and intentions for their current pregnancies. Considerable variation was identified between the drivers of behaviour around infant feeding and that related to abstinence from tobacco and alcohol during pregnancy. Overall, knowledge and confidence (psychological capability), the role of partners (social opportunity) and support from services to overcome physical challenges (environmental opportunity) were reported to impact on (reflective) motivation, and thus women's behaviour. The role of the public in creating and reinforcing stigma (social opportunity) was also noted in relation to all three behaviours. CONCLUSIONS: When designing new interventions to improve maternal health behaviours it is important to consider the accounts of pregnant women. Acknowledging pregnant women's subjective experiences and the challenges they face in negotiating acceptable forms of motherhood, can contribute to informed policy and practice, which can engage rather than isolate potential user groups.

Feasibility and acceptability of a motivational interviewing breastfeeding peer support intervention.

An uncontrolled study with process evaluation was conducted in three U.K. community maternity sites to establish the feasibility and acceptability of delivering a novel breastfeeding peer-support intervention informed by motivational interviewing (MI; Mam-Kind). Peer-supporters were trained to deliver the Mam-Kind intervention that provided intensive one-to-one peer-support, including (a) antenatal contact, (b) face-to-face contact within 48 hr of birth, (c) proactive (peer-supporter led) alternate day contact for 2 weeks after birth, and (d) mother-led contact for a further 6 weeks. Peer-supporters completed structured diaries and audio-recorded face-to-face sessions with mothers. Semistructured interviews were conducted with a purposive sample of mothers, health professionals, and all peer-supporters. Interview data were analysed thematically to assess intervention acceptability. Audio-recorded peer-support sessions were assessed for intervention fidelity and the use of MI techniques, using the MITI 4.2 tool. Eight peer-supporters delivered the Mam-Kind intervention to 70 mothers in three National Health Service maternity services. Qualitative interviews with mothers (n = 28), peer-supporters (n = 8), and health professionals (n = 12) indicated that the intervention was acceptable, and health professionals felt it could be integrated with existing services. There was high fidelity to intervention content; 93% of intervention objectives were met during sessions. However, peer-supporters reported difficulties in adapting from an expert-by-experience role to a collaborative role. We have established the feasibility and acceptability of providing breastfeeding peer-support using a MI-informed approach. Refinement of the intervention is needed to further develop peer-supporters' skills in providing mother-centred support. The refined intervention should be tested for effectiveness in a randomised controlled trial.

Development of a novel motivational interviewing (MI) informed peer-support intervention to support mothers to breastfeed for longer.

BACKGROUND: Many women in the UK stop breastfeeding before they would like to, and earlier than is recommended by the World Health Organization (WHO). Given the potential health benefits for mother and baby, new ways of supporting women to breastfeed for longer are required. The purpose of this study was to develop and characterise a novel Motivational Interviewing (MI) informed breastfeeding peer-support intervention. METHODS: Qualitative interviews with health professionals and service providers (n = 14), and focus groups with mothers (n = 14), fathers (n = 3), and breastfeeding peer-supporters (n = 15) were carried out to understand experiences of breastfeeding peer-support and identify intervention options. Data were audio-recorded, transcribed, and analysed thematically. Consultation took place with a combined professional and lay Stakeholder Group (n = 23). The Behaviour Change Wheel (BCW) guided intervention development process used the findings of the qualitative research and stakeholder consultation, alongside evidence from existing literature, to identify: the target behaviour to be changed; sources of this behaviour based on the Capability, Opportunity and Motivation (COM-B) model; intervention functions that could alter this behaviour; and; mode of delivery for the intervention. Behaviour change techniques included in the intervention were categorised using the Behaviour Change Technique Taxonomy Version 1 (BCTTv1). RESULTS: Building knowledge, skills, confidence, and providing social support were perceived to be key functions of breastfeeding peer-support interventions that aim to decrease early discontinuation of breastfeeding. These features of breastfeeding peer-support mapped onto the BCW education, training, modelling and environmental restructuring intervention functions. Behaviour change techniques (BCTTv1) included social support, problem solving, and goal setting. The intervention included important inter-personal relational features (e.g. trust, honesty, kindness), and the BCTTv1 needed adaptation to incorporate this. CONCLUSIONS: The MI-informed breastfeeding peer-support intervention developed using this systematic and user-informed approach has a clear theoretical basis and well-described behaviour change techniques. The process described could be useful in developing other complex interventions that incorporate peer-support and/or MI.

A prospective, mixed-methods, before and after study to identify the evidence base for the core components of an effective Paediatric Early Warning System and the development of an implementation package containing those core recommendations for use in the UK: Paediatric early warning system - utilisation and mortality avoidance- the PUMA study protocol.

BACKGROUND: In hospital, staff need to routinely monitor patients to identify those who are seriously ill, so that they receive timely treatment to improve their condition. A Paediatric Early Warning System is a multi-faceted socio-technical system to detect deterioration in children, which may or may not include a track and trigger tool. It functions to monitor, detect and prompt an urgent response to signs of deterioration, with the aim of preventing morbidity and mortality. The purpose of this study is to develop an evidence-based improvement programme to optimise the effectiveness of Paediatric Early Warning Systems in different inpatient contexts, and to evaluate the feasibility and potential effectiveness of the programme in predicting deterioration and triggering timely interventions. METHODS: This study will be conducted in two district and two specialist children's hospitals. It deploys an Interrupted Time Series (ITS) design in conjunction with ethnographic cases studies with embedded process evaluation. Informed by Translational Mobilisation Theory and Normalisation Process Theory, the study is underpinned by a functions based approach to improvement. Workstream (1) will develop an evidence-based improvement programme to optimise Paediatric Early Warning System based on systematic reviews. Workstream (2) consists of observation and recording outcomes in current practice in the four sites, implementation of the improvement programme and concurrent process evaluation, and evaluation of the impact of the programme. Outcomes will be mortality and critical events, unplanned admission to Paediatric Intensive Care (PICU) or Paediatric High Dependency Unit (PHDU), cardiac arrest, respiratory arrest, medical emergencies requiring immediate assistance, reviews by PICU staff, and critical deterioration, with qualitative evidence of the impact of the intervention on Paediatric Early Warning System and learning from the implementation process. DISCUSSION: This paper presents the background, rationale and design for this mixed methods study. This will be the most comprehensive study of Paediatric Early Warning Systems and the first to deploy a functions-based approach to improvement in the UK with the aim to improve paediatric patient safety and reduce mortality. Our findings will inform recommendations about the safety processes for every hospital treating paediatric in-patients across the NHS. TRIAL REGISTRATION: Sponsor: Cardiff University, 30-36 Newport Road, Cardiff, CF24 0DE Sponsor ref.: SPON1362-14. Funder: National Institute for Health Research, Health Services & Delivery Research Programme (NIHR HS&DR) Funder reference: 12/178/17. Research Ethics Committee reference: 15/SW/0084 [13/04/2015]. PROSPERO reference: CRD42015015326 [23/01/2015]. ISRCTN: 94228292 https://doi.org/10.1186/ISRCTN94228292 [date of application 13/05/2015; date of registration: 18/08/2015]. Prospective registration prior to data collection and participant consent commencing in September 2014.

A realist review of one-to-one breastfeeding peer support experiments conducted in developed country settings.

The World Health Organisation guidance recommends breastfeeding peer support (BFPS) as part of a strategy to improve breastfeeding rates. In the UK, BFPS is supported by National Institute for Health and Care Excellence guidance and a variety of models are in use. The experimental evidence for BFPS in developed countries is mixed and traditional methods of systematic review are ill-equipped to explore heterogeneity, complexity, and context influences on effectiveness. This review aimed to enhance learning from the experimental evidence base for one-to-one BFPS intervention. Principles of realist review were applied to intervention case studies associated with published experimental studies. The review aimed (a) to explore heterogeneity in theoretical underpinnings and intervention design for one-to-one BFPS intervention; (b) inform design decisions by identifying transferable lessons developed from cross-case comparison of context-mechanism-outcome relationships; and (c) inform evaluation design by identifying context-mechanism-outcome relationships associated with experimental conditions. Findings highlighted poor attention to intervention theory and considerable heterogeneity in BFPS intervention design. Transferable mid-range theories to inform design emerged, which could be grouped into seven categories: (a) congruence with local infant feeding norms, (b) integration with the existing system of health care, (c) overcoming practical and emotional barriers to access, (d) ensuring friendly, competent, and proactive peers, (e) facilitating authentic peer-mother interactions, (f) motivating peers to ensure positive within-intervention amplification, and (g) ensuring positive legacy and maintenance of gains. There is a need to integrate realist principles into evaluation design to improve our understanding of what forms of BFPS work, for whom and under what circumstances.

Availability of breastfeeding peer support in the United Kingdom: A cross-sectional study.

Peer support is recommended by the World Health Organization for the initiation and continuation of breastfeeding, and this recommendation is included in United Kingdom (U.K.) guidance. There is a lack of information about how, when, and where breastfeeding peer support was provided in the U.K. We aimed to generate an overview of how peer support is delivered in the U.K. and to gain an understanding of challenges for implementation. We surveyed all U.K. infant feeding coordinators (n = 696) who were part of U.K.-based National Infant Feeding Networks, covering 177 National Health Service (NHS) organisations. We received 136 responses (individual response rate 19.5%), covering 102 U.K. NHS organisations (organisational response rate 58%). We also searched NHS organisation websites to obtain data on the presence of breastfeeding peer support. Breastfeeding peer support was available in 56% of areas. However, coverage within areas was variable. The provision of training and ongoing supervision, and peer-supporter roles, varied significantly between services. Around one third of respondents felt that breastfeeding peer-support services were not well integrated with NHS health services. Financial issues were commonly reported to have a negative impact on service provision. One quarter of respondents stated that breastfeeding peer support was not accessed by mothers from poorer social backgrounds. Overall, there was marked variation in the provision of peer-support services for breastfeeding in the U.K. A more robust evidence base is urgently needed to inform guidance on the structure and provision of breastfeeding peer-support services.

Negotiating Closed Doors and Constraining Deadlines: The Potential of Visual Ethnography to Effectually Explore Private and Public Spaces of Motherhood and Parenting.

Pregnancy and motherhood are increasingly subjected to surveillance by medical professionals, the media, and the general public, and discourses of ideal parenting are propagated alongside an admonishment of the perceived "failing" maternal subject. However, despite this scrutiny, the mundane activities of parenting are often impervious to ethnographic forms of inquiry. Challenges for ethnographic researchers include the restrictions of becoming immersed in the private space of the home where parenting occurs and an institutional structure that discourages exploratory and long-term fieldwork. This paper draws on four studies, involving thirty-four participants, that explored their journeys into the space of parenthood and their everyday experiences. The studies all employed forms of visual ethnography, including artifacts, photo elicitation, timelines, collage, and sandboxing. The paper argues that visual methodologies can enable access to unseen aspects of parenting and engender forms of temporal extension, which can help researchers to disrupt the restrictions of tightly time bounded projects.

Development of a framework for the co-production and prototyping of public health interventions.

BACKGROUND: Existing guidance for developing public health interventions does not provide information for researchers about how to work with intervention providers to co-produce and prototype the content and delivery of new interventions prior to evaluation. The ASSIST + Frank study aimed to adapt an existing effective peer-led smoking prevention intervention (ASSIST), integrating new content from the UK drug education resource Talk to Frank ( www.talktofrank.com ) to co-produce two new school-based peer-led drug prevention interventions. A three-stage framework was tested to adapt and develop intervention content and delivery methods in collaboration with key stakeholders to facilitate implementation. METHODS: The three stages of the framework were: 1) Evidence review and stakeholder consultation; 2) Co-production; 3) Prototyping. During stage 1, six focus groups, 12 consultations, five interviews, and nine observations of intervention delivery were conducted with key stakeholders (e.g. Public Health Wales [PHW] ASSIST delivery team, teachers, school students, health professionals). During stage 2, an intervention development group consisting of members of the research team and the PHW ASSIST delivery team was established to adapt existing, and co-produce new, intervention activities. In stage 3, intervention training and content were iteratively prototyped using process data on fidelity and acceptability to key stakeholders. Stages 2 and 3 took the form of an action-research process involving a series of face-to-face meetings, email exchanges, observations, and training sessions. RESULTS: Utilising the three-stage framework, we co-produced and tested intervention content and delivery methods for the two interventions over a period of 18 months involving external partners. New and adapted intervention activities, as well as refinements in content, the format of delivery, timing and sequencing of activities, and training manuals resulted from this process. The involvement of intervention delivery staff, participants and teachers shaped the content and format of the interventions, as well as supporting rapid prototyping in context at the final stage. CONCLUSIONS: This three-stage framework extends current guidance on intervention development by providing step-by-step instructions for co-producing and prototyping an intervention's content and delivery processes prior to piloting and formal evaluation. This framework enhances existing guidance and could be transferred to co-produce and prototype other public health interventions. TRIAL REGISTRATION: ISRCTN14415936 , registered retrospectively on 05 November 2014.

Print media representations of UK Accident and Emergency treatment targets: Winter 2014-2015.

AIMS AND OBJECTIVES: To undertake an analysis of UK national daily newspaper coverage of accident and emergency treatment targets, in order to understand whether the media could be seen to be creating a scandal. BACKGROUND: Emergency department treatment targets have become common in developed countries. In the UK, hospitals are required to treat and discharge patients within four hours, and statistics are published daily. Breaches of targets are regularly reported by the UK print media. DESIGN: Exploratory research of tabloid newspaper articles that reported on four-hour treatment targets in the UK during a seven-month period over the winter of 2014-2015 (n = 1,317). An interpretivist thematic approach was used during analysis. RESULTS: The main "problem" identified by newspapers was the failure to meet the target, rather than negative effects on patient care (where they existed). Proposed solutions were diverse. Many articles did not describe who was to blame for the failure. CONCLUSION: We conclude that the media created a feeling of scandal, and hypothesise that this is related to political reasons and the availability of data on a daily basis. RELEVANCE TO CLINICAL PRACTICE: It is important for nursing staff to understand the influence of the media on patients and how stories are reported.

Treatment targets in emergency departments: nurses' views of how they affect clinical practice.

AIMS AND OBJECTIVES: To understand nurses' views and experiences of four-hour treatment targets in the emergency department and how this impacts clinical decision-making throughout acute secondary care hospitals. BACKGROUND: In many countries, national treatment targets in the emergency department have been introduced. However, research and a recent enquiry into poor clinical care in one hospital in the UK have highlighted that patient care may be compromised by the need to meet these targets. DESIGN: Qualitative descriptive study as part of a case study approach. METHODS: Semi-structured interviews were conducted with 31 nurses working in UK secondary care hospitals which had an emergency department. Nurses were purposively sampled from three specialties: emergency arenas (emergency department, n = 5; medical assessment n = 4 surgical receiving n = 2) (n = 11), surgical wards (n = 11) and medical wards (n = 9). RESULTS: Nurses in emergency arenas reported considerable burden, in terms of a very high workload and pressure from senior staff to meet the target. Respondents reported that negative impact on patient care for the majority of patients, excluding the most sick, for whom emergency arena nurses reported that they ensured received appropriate treatment, regardless of breaching treatment targets. Around half of the nurses working outside emergency arenas felt pressure and amended their work practices to enable colleagues in emergency arenas to meet treatment targets. CONCLUSIONS: Four-hour targets were not viewed as clinically helpful by the majority of nurses, some of whom questioned their appropriateness for patient care. RELEVANCE TO CLINICAL PRACTICE: Policy makers and senior managers should consider the suitability of treatment targets in the emergency department, particularly in relation to working conditions for nurses and other health professionals and its potential for negative impacts on patient care. While targets remain in place, senior nurses and managers should support nurses who breach the target to provide optimum clinical care.

Foucault, surveillance, and carbon monoxide testing within stop-smoking services.

Health professionals have adopted proactive testing for early evidence of disease. Researchers have identified that this leads to enumerated understandings and shapes behavior in productive ways. Smoking-cessation advisors regularly test clients for carbon monoxide (CO), but client views of this had not previously been explored. We interviewed 23 clients of a United Kingdom-based stop-smoking service regarding their experiences of CO testing. The majority of participants were successful quitters. We used ATLAS.ti 7 as a data-management tool during structured qualitative analysis. Our findings reveal that clients believed the results of their CO tests. Many became enumerated in their understanding, and thus placed themselves in a hierarchy with other members of their group. Almost all clients found that knowing their CO test score was motivating. We conclude that additional research is needed to understand the experiences of CO testing among clients who do not quit.

Prevalence of waterpipe (Shisha, Narghille, Hookah) use among adults in Great Britain and factors associated with waterpipe use: data from cross-sectional Online Surveys in 2012 and 2013.

INTRODUCTION: We assessed the prevalence and frequency of waterpipe smoking among adults (aged 18+ years) in Great Britain (GB) and determined demographic factors associated with use. METHODS: We used cross-sectional representative population surveys conducted online in 2012 and 2013. A total of 12,436 adults in 2012 and 12,171 in 2013 were recruited from a commercial online survey panel. RESULTS: The prevalence of ever use of waterpipe across both survey years combined was 11.6% (95% confidence interval [CI] = 11.0-12.1). Frequent use (at least once or twice a month) was 1.0% (95% CI = 0.8-1.2) and was similar in both 2012 and 2013. There was some suggestion of increased ever but not frequent use among 18-24-year-olds between survey years. After adjustment for covariates, females had lower odds of ever waterpipe use than males (odds ratio [OR] = 0.71, 95% CI = 0.63-0.79), those in the lowest social grade had lower odds of use compared to those in the highest social grade (OR = 0.43, 95% CI = 0.35-0.54), older people were at much lower odds of ever use than younger people, ever having smoked cigarettes increased odds of ever waterpipe use, and being Asian (OR = 1.84, 95% CI = 1.39-2.45) or of mixed ethnicity (OR = 2.36, 95% CI = 1.64-3.40) increased likelihood of ever use compared to White ethnicity. CONCLUSIONS: Frequent waterpipe smoking was relatively rare in these representative samples of the GB adult population, and prevalence was similar between 2012 and 2013. Continued monitoring and targeted interventions are appropriate.

Models for Access to Maternal Smoking cessation Support (MAMSS): a study protocol of a quasi-experiment to increase the engagement of pregnant women who smoke in NHS Stop Smoking Services.

BACKGROUND: Maternal smoking is a key cause of poor outcomes for mothers, babies and children and Wales has higher rates of smoking in pregnancy than any other UK country. Despite various improvements within the NHS Stop Smoking Service to strengthen the intervention for pregnant women, referrals and successful quit attempts for this group have continued to remain extremely low. A key element of UK national guidance for smoking cessation during pregnancy is to provide a flexible and tailored service to help increase levels of engagement. This study aims to test the effectiveness of three different models of service delivery to address the gap in the evidence base about how to deliver a flexible, tailored smoking cessation service to pregnant women. METHODS: This study will adopt a quasi-experimental design over a 12 month period. The setting is four of Wales' seven Health Boards using an integrated approach between maternity services, local public health teams and the NHS Stop Smoking Service. Core recommendations from UK public health guidance are being implemented across intervention and usual care sites. Stop smoking support for pregnant women in intervention sites is being delivered more flexibly than in usual care sites. Both qualitative and quantitative approaches will be adopted to capture important contextual information and consider multiple perspectives. A health economic analysis will be undertaken using a cost-consequences analysis approach. The primary outcome measure is engagement with stop smoking services (defined as having at least one face-to-face therapeutic contact with a clinician). DISCUSSION: Supporting pregnant women to stop smoking is a challenging area of public health. The proposed study will address several areas where there are key evidence gaps relating to smoking cessation interventions for pregnant women. Specifically, how best to encourage pregnant women to attend a specialist stop smoking support service, how to deliver the service and who should provide it.

"I am afraid of being treated badly if I show it": A cross-sectional study of healthcare accessibility and Autism Health Passports among UK Autistic adults.

BACKGROUND: Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality. AIM: To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant. METHODS: We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis. FINDINGS: Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP. CONCLUSIONS: Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people.

'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production.

LAY ABSTRACT: In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.