"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.

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.

"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.

A realist review of health passports for Autistic adults.

BACKGROUND: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. METHODS: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. FINDINGS: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. CONCLUSION: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.

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.

Breastfeeding in the pandemic: A qualitative analysis of breastfeeding experiences among mothers from Canada and the United Kingdom.

BACKGROUND: Previous research shows that the COVID-19 pandemic resulted in both barriers and facilitators to breastfeeding. However, little research has looked specifically at first-time mothers' experiences of breastfeeding during the pandemic or compared experiences of mothers living in different countries. AIM: This research explores mothers' breastfeeding experiences to describe how the COVID-19 pandemic has affected breastfeeding journeys in Canada and the United Kingdom. METHODS: Ten semi-structured online interviews were undertaken with first-time mothers who breastfed their baby at least once during the COVID-19 pandemic and are living in Canada or the United Kingdom. Interview transcripts were coded inductively using thematic analysis. FINDINGS: One overarching theme (all on mother) and four sub-themes were identified: 1) accessing and advocating for health care, 2) social support, 3) becoming a mother in isolation, and 4) breastfeeding baby. Similar themes were constructed for both countries. DISCUSSION: Mothers reported that diminished health care and social support created challenges in their breastfeeding journey. Many mothers reported receiving virtual breastfeeding support, which was largely experienced as unhelpful. Some mothers reported fewer distractions from visitors and more one-on-one time with their infant, which helped them to establish breastfeeding and a strong mother-infant bond. CONCLUSION: In both Canada and the United Kingdom, new mothers need consistent, reliable health care and social support when breastfeeding. This study supports the need to protect breastfeeding support in the midst of a global emergency and beyond to ensure positive breastfeeding experiences for both mother and baby.

Identities of women who have an autoimmune rheumatic disease [ARD] during pregnancy planning, pregnancy and early parenting: A qualitative study.

OBJECTIVE: Women of reproductive age who have autoimmune rheumatic diseases [ARDs] have expressed a need to be better supported with making decisions about pregnancy. Women with ARDs want their motherhood identities and associated preferences to be taken into account in decisions about their healthcare. The aim of this study was to explore the interplay between illness and motherhood identities of women with ARDs during preconception decision making. METHODS: Timeline-facilitated qualitative interviews with women diagnosed with an ARD [18-49 years old]. Participants were purposively sampled based on the following three criteria: thinking about getting pregnant, currently pregnant, or had young children. Interviews were thematically analysed. RESULTS: Twenty-two women were interviewed face-to-face [N = 6] or over the telephone [N = 16]. Interview length ranged from 20 minutes to 70 minutes, with a mean length of 48 minutes. Three main themes were identified: prioritisation, discrepancy, and trade-off. Difficulties in balancing multiple identities in healthcare encounters were reported. Women used 'self-guides' as a reference for priority setting in a dynamic process that shifted as their level of disease activity altered and as their motherhood identity became more or less of a focus at a given point in time. Women's illness and motherhood identities did not present in isolation but were intertwined. CONCLUSIONS: Findings highlight the need for holistic person-centred care that supports women with the complex and emotive decisions relating to preconception decision-making. In practice, health professionals need to consider women's multiple and sometimes conflicting identities, and include both their condition and family associated goals and values within healthcare communication.

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.

Autistic women's views and experiences of infant feeding: A systematic review of qualitative evidence.

LAY ABSTRACT: What is already known about the topic?Mothers are encouraged to breastfeed their babies due to known health benefits for both babies and mothers. However, although breastfeeding is 'natural', that does not make it easy and many women experience challenges. Autistic women may face additional barriers to breastfeeding when compared to neurotypical women.What this paper adds?We reviewed all existing evidence on Autistic mothers' infant feeding experiences (22 pieces) and found that although many Autistic women wanted to breastfeed, breastfeeding was difficult for Autistic mothers for three key reasons. First, maternity and infant feeding services were inaccessible and unsupportive to Autistic mothers, meaning they did not receive help when needed. Second, becoming a mother was challenging because of exhaustion, loss of control over routines and a lack of social support. Third, when breastfeeding Autistic mothers experienced sensory challenges, such as 'being touched out', and pain, which could feel unbearable. Despite these difficulties, many Autistic mothers had done a lot of reading about breastfeeding and were determined to breastfeed their babies; some mothers found breastfeeding positive. Infant formula was often viewed as second-best compared to breastmilk, but some mothers found the ritual of preparing bottles of formula to be calming.Implications for practice, research or policyThe findings of this work show that Autistic mothers urgently need better support from health professionals to help meet their breastfeeding goals, including how to remove or reduce the extra barriers being Autistic brings to breastfeeding.

Breasts and the city: an urban ethnography of infant feeding in public spaces within Cardiff, United Kingdom.

BACKGROUND: Internationally, women report challenges breastfeeding in public spaces. This study aimed to investigate the social-spatial aspects of public spaces in one UK city, Cardiff, in order to suggest possible barriers and facilitators to breastfeeding in public spaces. METHODS: The study observation location guide prioritised places that had been reported as hostile to breastfeeding or breastfeeding friendly in the existing literature. Data were collected between April and September 2018 at various times of day, in several areas of the city, and included transport (n = 4), transport hubs (n = 3), high streets (n = 4), cafes (n = 2), a large city centre shopping complex, comprising of three joined shopping malls and a large city centre department store containing a third café. Low inference field notes were written on an encrypted smart phone and expanded soon after. Data were analysed thematically using deductive codes based on the observation schedule. Additional inductive codes relating to places were added. RESULTS: Overall, public transport and the city centre were inhospitable environments for those who might need to breastfeed, and even more so for those who need to express breastmilk. The core barriers and facilitators across locations were the availability of appropriate seating coupled with either high privacy or politely unimposing strangers (civil inattention). The one variation to this model arose from the department store café, where civil inattention was not performed and there was low privacy, but breastfeeding occurred anyway. CONCLUSIONS: This research highlights the physical and social barriers to breastfeeding within one urban city centre in the UK and its associated transport links. It is clear that there is an urgent need for change in urban city centres and public transport if countries are to meet their aims in relation to increasing breastfeeding rates. Interventions will need to be multifaceted, accounting for social norms relating to infant feeding as well as changes to the physical environment, policy and potentially legal change. Further research should be undertaken in other countries to examine the extent to which hostile environments exist, and if correcting these could facilitate breastfeeding and reduce gender-based violence.

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.

Smoking during pregnancy, stigma and secrets: Visual methods exploration in the UK.

BACKGROUND: Moral judgements are commonly directed towards mothers through reference to health behaviour in pregnancy, and working-class mothers are particularly subject to this moral gaze. AIM: To gain an in-depth understanding of the health issues affecting 10 low income pregnant women from deprived areas of south Wales, UK. METHODS: Participants completed visual activities (timelines, collaging or thought bubbles and dyad sandboxing) prior to each interview. Participants' visual representations were used in place of a topic guide, to direct the interview. Guided by feminist principles, 28 interviews were completed with 10 women. Data were analysed thematically. FINDINGS: Smoking was discussed at length during interviews, and this paper focuses on this issue alone. Five of the participants had smoked during pregnancy. Negative reactions were directed towards pregnant women who smoked in public, resulting in maternal smoking being undertaken in private. Participants also reported awkward relationships with midwives and other health professionals, including receipt of public health advice in a judgemental tone. DISCUSSION: Smoking during pregnancy is a particularly demonised and stigmatised activity. This stigma is not always related to the level of risk to the foetus, and instead can be seen as a moral judgement about women. We urgently need to move from individualised neo-liberal discourses about the failure of individual smokers, to a more socio-ecological view which avoids victim blaming. CONCLUSION: Stigma from friends, family, strangers and health professionals may lead to hidden smoking. This is a barrier to women obtaining evidence based stop smoking support.

Using Visual Timelines in Telephone Interviews: Reflections and Lessons Learned From the Star Family Study.

Visual timeline methods have been used as part of face-to-face qualitative interviewing with vulnerable populations to uncover the intricacies of lived experiences, but little is known about whether visual timelines can be effectively used in telephone interviews. In this article, we reflect on the process of using visual timelines in 16 telephone interviews with women as part of the "STarting a family when you have an Autoimmune Rheumatic disease" study (STAR Family Study). The visual timeline method was used to empower women to organize and share their narratives about the sensitive and complex topic of starting a family. We conducted a thematic analysis of the audio-recorded interview data, using researchers' field notes and reflections to provide context for our understanding of the benefits of using timelines and to understand the process of using visual timelines during telephone interviews. Resource packs were sent to women before study participation; 11 of the 16 women completed a version of the timeline activity. Six themes were identified in the methodological data analysis: (1) use and adaptation of the timeline tool, (2) timeline exchange, (3) framing the interview: emphasizing that women are in control, (4) jumping straight in, (5) taking a lead, and (6) disclosing personal and sensitive experiences. The use of visual timelines facilitated interviewee control and elicited rich narratives of participants' experiences in telephone interviews. Women created their visual timelines autonomously and retained ownership of their timeline data; these features of the data generation process need to be considered when using visual timelines in telephone rather than face-to-face interviews. Use of visual methods within telephone interviews is feasible, can generate rich data, and should be further explored in a wider range of settings.

"Nobody knows, or seems to know how rheumatology and breastfeeding works": Women's experiences of breastfeeding whilst managing a long-term limiting condition - A qualitative visual methods study.

BACKGROUND: Only around 1% of babies in the UK are breastfed exclusively until six months of age as recommended by the World Health Organisation. One in ten women who have recently given birth in the UK have a long-term illness and they are at increased risk of stopping breastfeeding early. We considered women with autoimmune rheumatic diseases as an exemplar group of long term illnesses, to explore the barriers and enablers to breastfeeding AIM: To understand the experiences of infant feeding among women with autoimmune rheumatic diseases and to identify potential barriers and enablers. DESIGN: Qualitative visual timeline-facilitated interviews. PARTICIPANTS AND SETTING: 128 women with autoimmune rheumatic diseases who were considering pregnancy, pregnant, or had young children took part in an online survey as part of the STAR Family Study. Of these, 13 women who had children were purposefully sampled to be interviewed. Interviews took place in person or on the telephone. Timeline-facilitated interviews were used to focus on lived experiences and topics important to the women, including early parenting. We conducted a focused thematic analysis of women's lived experiences of infant feeding. RESULTS: Three main themes were identified in relation to breastfeeding: lack of information about medication safety, lack of support in decision-making and maintaining breastfeeding, and maternal guilt. CONCLUSIONS: Women with autoimmune rheumatic diseases found it difficult to access the information they needed about medications to make informed decisions about breastfeeding. They often also felt pressurised into breastfeeding and experienced feelings of guilt if they were unable, or did not wish to breastfeed. Tailored interventions are required that adopt a non-judgmental and person-centred approach to support decision-making in regard to infant feeding, providing women with information that can best enable them to make infant feeding choices.

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.

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.

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.

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.