"Work with us to make it more accessible". What women with intellectual disabilities want from infant-feeding health resources: an exploratory study.

BACKGROUND: More women with intellectual disabilities are becoming mothers but fewer are known to breastfeed compared with other women. Women with intellectual disabilities are entitled to accessible antenatal and infant feeding information, yet are rarely asked for their views on available resources. This article reports on the final stage of a UK project exploring how women with intellectual disabilities are supported to make infant feeding decisions. The wider project includes a scoping review and interviews with healthcare professionals, here we focus on the voices of the women themselves. METHODS: Four women with an intellectual disability participated in a focus group where they were asked to give their views on the accessibility of currently available infant feeding resources and on alternative representations of infant feeding. All were interested in women's health issues, including infant feeding. Photo-elicitation was used to gather views on videos, bespoke 'Easy Read' material and several alternative representations of infant feeding. A transcription of the discussion was thematically analysed whilst a critical visual analysis was undertaken of the women's preferred images/resources. The study took place in Bristol, UK, during 2022. RESULTS: Two themes were identified from the group discussion: 'The desire for choice' and 'How easy is 'Easy Read'?' The desire for choice was expressed in terms through agreements and disagreements about preferred imagery, differing tastes, and reasons for these preferences. We identified a challenge to 'Easy Read' as a default standard and concerns that some forms of 'Easy Read' can confuse rather than inform. Critical visual analysis identified the importance of the story and social setting of the preferred infant feeding image. CONCLUSIONS: Findings suggest a need for a suite of resources, avoiding the one-size-fits-all approach, including people with an intellectual disability at every stage of the design and production process. Resources should recognise and embrace differences in terms of understanding, visual literacy and cultural taste, as well as being freely available to support women with intellectual disabilities to make informed infant feeding decisions. An accessible film was co-produced, to disseminate the findings from all three stages of the completed project.

Parental engagement with complementary feeding information in the United Kingdom: A qualitative evidence synthesis.

Complementary feeding is the process of introducing solid foods to milk-fed infants (also known as weaning). Current UK guidance states that complementary feeding should occur around 6 months but not before 4 months. This systematic review explores how parents in the UK, with an infant under 24 months of age, engage with sources of information and advice about complementary feeding. Engaging with sources of information can influence parents' feeding choices and so a better understanding of parents' information behaviours can improve service provisions. Six databases were searched, identifying 15 relevant qualitative studies with the predefined criteria. Data from each study were coded line by line allowing for a synthesis of higher analytical themes. Using thematic synthesis, four main themes were observed: (1) trust and rapport-parents valued information from a trusted source (2), accessibility-information needs were often time sensitive, and parents showed varying levels of understanding, (3) adapting feeding plans-often influenced by practicalities (4), being a good parent-feeding plans were changed to comply with societal ideas of 'good parenting'. The review concluded that parents receive information and advice about complementary feeding from multiple sources and are highly motivated to seek further information. The scope of this novel review explored the parental experience of finding, receiving and engaging with information sources and how this may or may not have influenced their feeding behaviours. The review has provided a new perspective to add to the growing body of literature that focuses on the experience of feeding an infant.

Supporting women with learning disabilities in infant feeding decisions: UK health care professionals' experiences.

Women with learning disabilities are less likely to breastfeed than other women. They may find it hard to understand or learn feeding techniques or know that they have infant feeding choices. This population may be supported during their pregnancies by a range of professionals with differing priorities and responsibilities towards both the mother and the baby. This puts considerable pressure on health care professionals including, but not limited to, midwives, infant feeding specialists, health visitors and learning disability nurses. Those who support women with learning disabilities through their journey into motherhood have a responsibility to ensure the women in their care have the information they need to make decisions about a range of issues, including infant feeding. In the absence of dedicated lactation consultants, this is one of many issues to be discussed within time-limited appointments. Little is known about the experience of supporting women with learning disabilities to make infant feeding decisions from the point of view of health professionals. Using a qualitative descriptive research design, we conducted online, semistructured interviews with seven UK health professionals about their experience of supporting women with learning disabilities in infant feeding. Thematic analysis identified three themes: the importance of health professionals' having unconditional, positive regard; the need for an individualised approach to supporting women to make infant-feeding decisions; and being part of the support network. This suggests that women with learning disabilities can make and put into practice infant feeding decisions if they have access to the right support at the right time.

Supporting women with learning disabilities in infant feeding decisions: A scoping review.

Mothers with learning disabilities face many challenges during the perinatal period including preparing for and establishing infant feeding. Evidence shows that women with learning disabilities are less likely to breastfeed than other mothers. A scoping review was undertaken using Arksey and O'Malley's methodology to understand what is known about how women with learning disabilities can be supported to make infant feeding decisions, particularly in relation to the use of appropriate and accessible images. An additional aim was to understand what further research is needed to achieve sustainable improvements to policy and practice in this area. A comprehensive search of fourteen electronic databases was undertaken to look for both published and grey literature. Initial searches, after removal of duplicates, resulted in 467 primary research articles plus 22 items of grey literature. Following a systematic process, three published papers and six items of grey literature were identified which met inclusion and exclusion criteria, five of which were resources. Little is known about the acceptability of existing resources, specifically in relation to the use of visual images. A synthesis of the grey literature and a thematic analysis of published literature was conducted and confirmed that women with learning disabilities need tailored support with infant feeding, including accessible resources and that there is a need for more in-depth research in this area. There is a high level of agreement about the importance of using easily read visual images within these resources, but little evaluation of the types of imagery used or their aesthetic histories.

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.

What are the holistic experiences of adults living long-term with the consequences of cancer and its treatment? A qualitative evidence synthesis.

PURPOSE: The number of people living with and beyond cancer is increasing; a significant number of these people will experience the long-term and late effects of cancer and its treatment. Research into this group has been identified as a priority to better understand healthcare needs. This review identified and synthesised qualitative research data relating to the lived experience of the consequences of cancer and its treatment. METHODS: A systematic search via electronic databases was conducted in July 2019. Literature was identified that explored the experience of adults living beyond cancer from their own perspective. Thematic synthesis was used to extract and analyse data. RESULTS: Six articles were reviewed. Three main themes were identified with four subthemes:1. Living with an altered sense of self; 2. Things are never going to be quite the same again (2.1. The unexpected. 2.2 The uncertain.); 3. Ways of coping with the unexpected and the uncertain. (3.1. Drawing on internal resilience. 3.2. The influence and impact of external relationships.). The findings showed that the participants' world-view changed after cancer and this affected everyday lives both positively and negatively. CONCLUSIONS: The experience of having had cancer remains significant long after diagnosis and treatment, yet effective preparation and ongoing support for living beyond cancer is lacking. The experience of living long-term after cancer is characterised by an altered sense of self and has implications for long-term wellbeing. Further research should explore healthcare needs and services required to adequately meet the needs of this growing group of people.

Local Landscapes of Breastfeeding: A comparison of breastfeeding amongst mothers in low- and high-income neighborhoods in Bristol, UK.

This paper compares experiences of breastfeeding outside the home for women living in low-income and high-income neighborhoods of the same city. Our findings are based on an analysis of 22 interviews with breastfeeding mothers (11 in each of two study areas) undertaken in Bristol, UK in 2017. We extend existing scholarship by showing how experiences of breastfeeding vary not only at the regional level but between local areas of the same city, and outline how our findings can inform policy. We advance literature on maternal bodies by exploring how local "landscapes" of breastfeeding emerge as mothers encounter and negotiate different socio-material landscapes and locally-differentiated norms about "appropriate" maternal embodiment. We argue that these variegated interactions can lead to different orientations to space and forms of spatial practice on the part of breastfeeding mothers, as well as different kinds of maternal identities.

Gender dynamics in the donation field: human tissue donation for research, therapy and feeding.

This paper examines how gender dynamics shape human tissue donation for research and for human health. Drawing on research investigating the donation of different types of bodily tissues including blood, plasma, breastmilk, cord blood, foetal tissue and placentae we consider how and why women and men are viewed as different kinds of donors. We situate these donation practices within a broader understanding of gender difference to explain why any sociology of donation needs to take account of gender. In so doing we explore how tissue derived from the bodies of women acquires value in distinctive ways and for distinctive purposes and reasons. Within these gendered bioeconomies of donation, the supply and demand for tissue is structured by social understandings of maternity, parental responsibility, and risk, which in turn affect the experiences of donors.

'A little bit offended and slightly patronised': parents' experiences of National Child Measurement Programme feedback.

OBJECTIVE: To develop a descriptive account of parents' experiences of written feedback from the National Child Measurement Programme (NCMP), based on primary data collected from semi-structured focus groups. DESIGN: Four focus groups were held with a purposive sample of parents who had recently received written weight feedback from the NCMP in one local authority in England. Thematic data analysis was undertaken to develop a narrative of emergent themes regarding parents' experiences and the social influences shaping this.Setting/SubjectsThe population of interest was parents of 4- and 5-year-olds who had recently received written feedback from the NCMP. Eighteen parents participated and represented the full spectrum of categories provided in NCMP feedback (under-, healthy, over- and very overweight). RESULTS: Participants often rejected overweight feedback as lacking in credibility and considered NCMP communication to be targeting parents other than themselves. Family and peers collaborated in the dismissal of overweight feedback, further legitimising participants' decision to disregard their child's overweight categorisation. CONCLUSIONS: Our study provides an insight into parents' experiences of NCMP feedback, including how they relate to and understand that experience within a social context. By doing so, it makes a unique contribution to the existing body of evidence. Recommendations for practice based on the findings include further efforts to raise parents' and communities' awareness of childhood obesity, risks associated with childhood excess weight and obesity prevalence as a mainstream issue.

'The mum has to live with the decision much more than the dad'; a qualitative study of men's perceptions of their influence on breastfeeding decision-making.

BACKGROUND: Although breastfeeding is widely acknowledged as the normal method of infant feeding, there are large variations in rates of initiation and duration. Several factors are linked to the likelihood of breastfeeding initiation, including the influence and opinion of the child's father. There is limited research into men's perception of their influence, or if they feel it appropriate to be involved in deciding how to feed their children. The aim of this study was to investigate, using a qualitative methodology, fathers' perceptions of their influence on the decision to feed their child breastmilk or formula. METHODS: Six men were recruited through Children's Centres in Bristol, United Kingdom, and a phenomenological research methodology implemented using semi-structured interviews. Specific objectives were: to understand participants' views on breastfeeding; understand if and how these views were discussed with their partner; to determine if participants believed involvement in the feeding decision is appropriate; to understand how they felt about the decision made; and to see if their views changed after the birth of their child. RESULTS: Multiple themes emerged during analysis, including deferring of responsibility to the mother; breastfeeding as normal practice; change in attitude; involvement in parenting; and, advantages for the father. The men in the study accepted breastfeeding as normal behaviour, probably because of their upbringing in households where breastfeeding was practiced. There was consensus that women had more say in deciding to breastfeed, which was explained as a consequence of their greater involvement. It could also be interpreted as an unwillingness to interfere in an area perceived as 'owned' by women. Participants acknowledged that breastfeeding was more difficult than they had perceived. CONCLUSIONS: The key themes emerging from the interviews are suggestive of an impact on breastfeeding interventions that use the father as an intermediary. If they do not feel that they are 'permitted' to comment on their partner's breastfeeding, then simply increasing knowledge of breastfeeding benefits in these men is likely to have minimal impact.

Using liminality to understand mothers' experiences of long-term breastfeeding: 'Betwixt and between', and 'matter out of place'.

Breastmilk is widely considered as the optimum nutrition source for babies and an important factor in both improving public health and reducing health inequalities. Current international/national policy supports long-term breastfeeding. UK breastfeeding initiation rates are high but rapidly decline, and the numbers breastfeeding in the second year and beyond are unknown. This study used the concept of liminality to explore the experiences of a group of women breastfeeding long-term in the United Kingdom, building on Mahon-Daly and Andrews. Over 80 breastfeeding women were included within the study, which used micro-ethnographic methods (participant observation in breastfeeding support groups, face-to-face interviews and online asynchronous interviews via email). Findings about women's experiences are congruent with the existing literature, although it is mostly dated and from outside the United Kingdom. Liminality was found to be useful in providing insight into women's experiences of long-term breastfeeding in relation to both time and place. Understanding women's experience of breastfeeding beyond current usual norms can be used to inform work with breastfeeding mothers and to encourage more women to breastfeed for longer.

Contested moral landscapes: Negotiating breastfeeding stigma in breastmilk sharing, nighttime breastfeeding, and long-term breastfeeding in the U.S. and the U.K.

Recent public health breastfeeding promotion efforts have galvanized media debates about breastfeeding in wealthy, Euro-American settings. A growing body of research demonstrates that while breastfeeding is increasingly viewed as important for health, mothers continue to face significant structural and cultural barriers. Concerns have been raised about the moralizing aspects of breastfeeding promotion and its detrimental effects on those who do not breastfeed. Far less, however, is known about the moral experiences of those who pursue breastfeeding. This study draws together research on breastmilk sharing (2012-2016) and nighttime breastfeeding from the U.S. (2006-2009), and long-term breastfeeding from the U.K. (2008-2009) from three ethnographic projects to address this gap. Comparative analysis of these cases reveals that while breastfeeding is considered ideal infant nutrition, aspects of its practice continue to evoke physical and moral danger, even when these practices are implemented to facilitate breastfeeding. Breastmilk sharing to maintain exclusive breastmilk feeding, nighttime breastfeeding and bedsharing to facilitate breastfeeding, and breastfeeding beyond the accepted duration are considered unnecessary, unhealthy, harmful or even deadly. The sexual connotations of breastfeeding enhance the morally threatening qualities of these practices. The cessation of these "problematic" breastfeeding practices and their replacement with formula-feeding or other foods is viewed as a way to restore the normative social and moral order. Mothers manage the stigmatization of these breastfeeding practices through secrecy and avoidance of health professionals and others who might judge them, often leading to social isolation. Our findings highlight the divide between perceptions of the ideal of breastfeeding and its actual practice and point to the contested moral status of breastfeeding in the U.S. and the U.K. Further comparative ethnographic research is needed to illuminate the lived social and moral experiences of breastfeeding, and inform initiatives to normalize and support its practice without stigmatizing parents who do not breastfeed.

An exploration of the experiences of mothers who breastfeed long-term: what are the issues and why does it matter?

BACKGROUND: The World Health Organization (WHO) promotes breastfeeding for 2 years and beyond. Despite this, only 25% of women in the United Kingdom are breastfeeding at all by 6 months postpartum, with a minority of women breastfeeding beyond the first year. Those who do often report feeling ridiculed or alienated in their choice. Here, the aim was to examine the experiences of women who chose to breastfeed longer term and to seek insight into the ways they felt breastfeeding could be normalized past infancy. SUBJECTS AND METHODS: The study combined two qualitative datasets that explored maternal attitudes and experiences toward longer-term breastfeeding. In Study 1 a combination of methods was used, including interviews, to explore the challenges, attitudes, and experiences faced by women who had breastfed for over 6 months postpartum. In Study 2, 1,319 mothers who were pregnant or had an infant 0-2 years old completed an open-ended questionnaire exploring their attitudes toward longer-term breastfeeding. RESULTS: Mothers who had experience of longer-term breastfeeding described how they faced negative attitudes and criticism from others, including the perceptions that longer-term breastfeeding was comical, bizarre, and pointless. Mothers discussed ways in which longer-term breastfeeding could be normalized rather than promoted, targeting health professionals and society instead of encouraging mothers themselves. Key ideas included greater visual representation, increasing knowledge and removing stigma. CONCLUSIONS: Longer-term breastfeeding needs to be normalized to increase acceptance and in turn reduce the negative attitudes that mothers often face despite following WHO guidance. Greater support is needed from health professionals and in health policy.

Trainees' experiences of multidisciplinary public health training schemes in England.

From 1999 onwards most English NHS regions launched multidisciplinary public health training schemes. These schemes were open to those from backgrounds other than medicine and followed on from the announcement of a new multidisciplinary Public Health Specialist post-a post equivalent to the traditional medical Consultant in Public Health Medicine. This article documents the issues arising during the first few years of the multidisciplinary public health training schemes. It also includes a number of case studies from trainees who have passed through the training schemes, examining the positive and negative experiences of these trainees. The paper reveals how the schemes initially varied considerably by region, in respect of pay and other terms and conditions. The case studies from ex-trainees reveal a number of positive and negative features of the training schemes.