key: cord-0762982-u77cz8me
authors: Johnson, Clare; Douglass, Emma; Lucas, Geraldine; Dowling, Sally
title: Supporting women with learning disabilities in infant feeding decisions: A scoping review
date: 2022-01-28
journal: Matern Child Nutr
DOI: 10.1111/mcn.13318
sha: 77c04eeba01a3dc2cde5d7baad64367476ad03f0
doc_id: 762982
cord_uid: u77cz8me

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.

the current World Health Organization and Unicef recommendation that infants be exclusively breastfed for the first 6 months of life (WHO/Unicef, 2003) .

The Convention on the Rights of Persons with Disabilities (United Nations, 2006) advocates that in order for persons with a disability to make decisions, mechanisms of support should be available. In line with the Equality Act (2010) healthcare professionals in the UK are required to make reasonable adjustments, which includes the provision of accessible antenatal information. To be accessible, information should be 'able to be read or received and understood by the individual or group for which it is intended' (NHS England, 2017, p. 6 ). However, a study by Porter et al. (2012) identified a paucity of antenatal resources for pregnant women who have learning disabilities, and a systematic review of antenatal care provision for women with learning disabilities (Homeyard et al., 2016) identified that this population often struggle to understand antenatal communication and information, with findings suggesting that midwives lack knowledge in this area and would welcome additional guidance. It appears that these women are not receiving the information they need through the current mechanisms offered.

The Scottish Government articulates the need for quality support, tailored information and family centred approaches throughout pregnancy in their document 'Supporting Parents with Learning Disabilities in Scotland: Challenges and Opportunities' (Stewart et al., 2015; Scottish Consortium for Learning Disability, 2015) . This document argues that as a central tenet of good practice, better accessibility to quality resources and information can lead to enhanced outcomes for children whose mothers have a learning disability. This includes the fostering of close maternal/ infant bonds, which can be achieved through a range of experiences including infant feeding. This approach to infant feeding-whether from the breast or using bottles-is promoted by the Unicef Baby Friendly Initiative and is the basis for the support they offer to maternity, neonatal, health visiting, children's centre services and universities (Unicef, 2021) .

It is important that mothers with a learning disability are supported to make informed decisions about infant feeding, to understand the benefits of breastfeeding for the health of women and children (Victora et al., 2016) , and to understand that they have choices about how they feed their babies, including safe formula feeding. This scoping review aims to discover what is currently understood about infant feeding choices for women with learning disabilities, paying attention to the use of visual images and where further research is needed to achieve effective and sustainable improvements to policy and practice in this area.

This scoping review is part of a larger piece of work, which aims to understand how women with learning disabilities can be supported to make infant feeding decisions, particularly in relation to the use of appropriate and accessible images. Overall the project has the following aims:

1. What resources are available to support this population to make decisions about infant feeding?

2. How do professionals support women with learning disabilities to make these decisions? 3. How would women with learning disabilities like to be supported to make these decisions? 4. Which images/media are most effective in supporting decisionmaking in this area?

In addition to the scoping review reported here, the other phases of the project include:

1. Qualitative interviews with health professionals about their experiences of supporting women with learning disabilities in making infant feeding decisions (interviews complete (n = 7), analysis in progress, write-up for publication to follow); 2. Focus groups with women with learning disabilities to show and discuss a range of images of breastfeeding (resources prepared, focus groups currently on hold due to Covid-related delays in recruitment); 3. A final report synthesising findings from all three phases to make recommendations for practice and/or future research.

A scoping review is an iterative process in which the relevant literature is identified and synthesised in order that gaps in the existing knowledge base can be identified. Arksey and O'Malley's (2005) scoping review methodology was followed throughout this study. This includes five stages: 1. Identifying the research question.

2. Identifying relevant studies. 3. Study selection. 4. Charting the data. 5. Collating, summarising and reporting the results. We also followed the reporting guidelines in the PRISMA Extension for Scoping Reviews (Tricco et al., 2018) , where relevant. Critical appraisal of individual sources of evidence is not usually undertaken as part of scoping review methodology (Arksey & O'Malley, 2005) .

• Women with learning disabilities need tailored support with infant feeding, including accessible resources.

• Little is known about the acceptability of existing resources on infant feeding to women with learning disabilities, specifically in relation to the use of visual images.

• We found a small number of existing resources, which are similar in approach but not always easy to access.

• The different disciplinary backgrounds of the researchers enabled us to consider the needs of mothers with learning disabilities alongside the history of visual representations of learning disability.

Our research question, which was developed following a review of the literature and study team discussion, was: How are women with learning disabilities supported to make infant feeding decisions? This is also the overall question for our larger project. This review specifically aimed to answer: What resources are available to support this population to make decisions about infant feeding? This was underpinned by our specific interest in the use of visual and accessible images.

A comprehensive search of both scientific and grey literature was undertaken (Arksey & O'Malley, 2005) . A search for published literature was conducted in November 2020 with input from two subject librarians from the University of the West of England (UWE), Bristol, Library Service. We searched the electronic databases EBSCO (CINAHL, Medline, AMED, PsycInfo), Embase (Maternity and Soc policy), IBSS, BND, Soc Abs, Scopus, Cochrane and NICE Evidence to access a wide range of health-related literature as possible. We also searched using Google Scholar, Open Grey and Base to look for grey literature.

The use and appropriateness of search terms evolved during discussions with the librarians assisting us. Our initial searches were too specific and did not result in any useful literature; including terms such as 'support' and 'resources' led to unmanageable numbers to review. The final search used four concepts, using synonyms for learning disability, infant feeding, mother and health promotion.

These were then combined and used in each database (see Table 1 ).

We included all types of research design and excluded papers published more than 10 years ago (i.e., published before November 2010) and those not published in English. Duplicates were removed. Titles and abstracts were retrieved for screening.

A search of grey literature was initially undertaken independently by all four researchers using Google. The searches used variations on wording which arose from our iterative search terms discussion with the librarians and included: resources to support women with learning disabilities with infant feeding, mother and learning disability, women with learning disabilities and infant feeding and the words breastfeeding; infant feeding; learning disability; midwifery; midwives and bottlefeeding. Each researcher looked through the first and subsequent pages generated until the results appeared either very similar to those found or increasingly irrelevant (this happened fairly quickly).

We combined our findings and removed duplicates before discussion.

In addition to the database and grey literature searching ED also consulted with some experienced experts and another researcher in this area who was known to us. Arksey and O'Malley (2005) suggest consulting with networks/people working in the area to identify additional grey literature as an optional stage in identifying relevant literature.

These people sent us some additional resources but this did not result in anything that we had not already found through our other search processes.

An iterative screening process was followed during a series of meetings to select studies for the review. All four researchers independently read through the titles and abstracts of retrieved literature in line with the pre-agreed inclusion/exclusion criteria labelling each as either 'include,' 'maybe' or 'exclude'. Following the first stage of study selection, the discussed articles/resources were retrieved, and the team agreed to refine the inclusion and exclusion criteria to make the search more specific. This was because some of the retrieved papers/resources were useful contextual information, but not focused on 'women with a learning disability' and 'infant feeding'. The inclusion and exclusion criteria were accordingly amended (see Table 2 ).

At all stages, researchers erred on the side of caution, marking an article as 'maybe' rather than 'exclude'. The same process was followed for both published and grey literature. During subsequent meetings, all literature on the 'yes' and 'maybe' list was discussed.

Authors were contacted via e-mail for copies of resources referred to within retrieved articles or via the grey literature search. Full-text was retrieved for published literature and all four researchers read the papers independently. 

Concept Concept Concept Concept 'Learning disab*' OR 'Learning diff*' OR 'Intellect* impair*' OR 'Intellect* disab*' OR 'Develop* disab*' OR 'Develop* impair*' AND 'breast fe*' OR 'breastfe*' OR 'breast-fe*' OR lactat* OR 'parent-infant relations*' OR 'infant feed*'AND

Charting the data involves collating key information about the included items in the review, and is similar to data extraction in traditional systematic reviews (Arksey & O'Malley, 2005) . In a scoping review, this process can be seen as the first stage in a narrative review (Arksey & O'Malley, 2005) . This process was carried out by CJ and GL. There were nine items in total-the two researchers extracted the data for four items each, with the data for one item being extracted by both to ensure parity and consistency of process. The data extracted can be seen in Table 3 (see Results) , describing the following:

• title of study

• author(s)

• what form the literature takes (e.g., journal article, report, resource)

• research methods used (if it is a research study)

• extent to which it addresses infant feeding (including breastfeeding and formula feeding)

• if it considers best practices or principles For resources, data were also extracted about the form the resource takes (e.g., text, easy read and images) and accessibility (how easy it is to access the resource as opposed to accessibility of content for women with learning disabilities). For journal articles and reports,

the key messages or findings were also extracted.

We conducted a synthesis of the grey literature which involved describing and critiquing the resources found, alongside a thematic analysis of published literature (Thomas & Harden, 2008) . These are The thematic analysis was conducted by ED and SD. We first copied the 'results' text from all three papers into Word documents. Thomas and Harden's (2008) three-stage approach was used to synthesise this data, which involved line-by-line coding of the sections from each paper by ED. Line-by-line coding led to the naming of descriptive themes before analytical themes were identified. 

Focus is on women/woman/mother(s) who has a learning disability. (Please note that whilst "learning disability" is the term used in England and Wales, the term "Intellectual Disability" or "Intellectual Impairment" is used internationally, so accept all 3 terms).

Focus is on child/children with a learning disability and not mother.

Focus of paper is on using or developing resources to support infant feeding decisions. Or Resource includes infant feeding (Infant feeding in its widest sense, so could be preparation antenatally, bottle feeding, breastfeeding, support, experiences of, etc.) Could be research, antenatal information, or resources.

Focus is on benefits of breastfeeding. (This will be useful for context but not scoping review). Focus is on weaning not early infant feeding Infant feeding is mentioned as an area of practice requiring further development/accessible resources, rather than focus of paper/ resource.

English language Non-English language

Any study design/method, policy, strategy, guidance document, material for professionals. Also, leaflets and other resources intended to be used with women with learning disabilities.

T A B L E 3 Charting the data from included papers and grey literature for women with learning disabilities. This combination of disciplinary backgrounds has encouraged a reflexive approach in which we each recognise our own situatedness within divergent critical discourses and question our own assumptions.

After excluding duplicates, 467 published articles and 22 items of grey literature were screened and 9-3 published studies and 6 items of grey literature-were selected for the review. Figure 1 shows the process of searching, inclusion, exclusion and selection. (Homeyard & Patelarou, 2018 ) was a survey of accessible antenatal maternity resources in NHS Trusts in England for women with learning disabilities. Only one of the three studies retrieved was therefore specifically focused on infant-feeding, however, all were included as they met our inclusion criteria (see blue. There is an additional section that provides further context and explanation on these more difficult terminologies. There is a section on how to undertake hand expression, how to breastfeed and, most importantly, where women can access support should they experience any difficulties.

The easy read format is also used by CHANGE, which is a human rights organisation led by people with learning disabilities with a focus on accessibility and equality. CHANGE work alongside people who have lived experience of learning disabilities to coproduce bespoke easy read resources. We were able to review a briefing paper about resources for parents with learning disabilities but were initially unable to access the resources themselves. Eventually, the retail facility of the CHANGE website became functional and we were able to purchase and review the easy read resources. These are substantial ring binders, which contain a wealth of information about pregnancy, birth and parenting approved by UNICEF UK Baby Friendly Initiative. The amount of information is potentially overwhelming. However, the information is divided into sections and includes blank pages at the end of each section for the user to write notes. The resources retail at £45 each, which puts them out of reach for many families. A resource portfolio is available on the CHANGE website, which details publications on pregnancy, caring for 0-1 and 1-5 year-olds (https://www.changepeople.org/). In Scotland, these books are given free to every parent who has a learning disability, but they are not freely available online.

Support Pack, which is an accessible resource designed to address a typical antenatal care pathway for women with learning disabilities. 

Wales and CHANGE), which aim to be inclusive and tackle the communication issues identified in both grey and published literature, for example, difficulties understanding pregnancy information, reluctance to attend antenatal classes, consequent lack of preparedness for labour and birth. Easy read is the accepted format for communicating information to people with learning disabilities, but we did not find any critical evaluation of easy read information being used for infant feeding across either the grey or published academic literature.

Public Health Wales' 'All About Breastfeeding' is a useful example of the easy read format. It is divided into three sections:

'why breastfeeding is best for your baby and for you,' 'how to breastfeed and express milk,' and 'where to get help and support'.

The visuals include both photographs and illustrations, often used in combination on the same page. Layout is uniform with a column of images on the left-hand side of each page and text in short sentences using a large sans-serif font on the right-hand side.

There is minimal extraneous page furniture other than a small number of boxouts to comment, for example, on formula feeding and cluster feeding. Photos are used to depict people (e.g., mothers, babies and midwives), social situations (e.g., appointments), to resources if additional support is needed. There is a link to the Baby Buddy app, which is not specific to women with learning disabilities, but considered 'the perfect tool for mothers with learning disabilities' (Best Beginnings, 2021) . The web page is primarily informative, focussing on issues in pregnancy, issues for antenatal care and education, issues for parenting and issues for communication. There are links to 13 short videos on breastfeeding covering topics such as the first feed, overcoming challenges and expressing.

In addition to resources, our review included a substantial report on a project called Inclusive Support for Parents with a Learning Disability (Leaviss et al., 2011) , which was carried out by MENCAP and funded by the UK Department of Health. The main aim of the project was to train health professionals working with parents during pregnancy and early parenthood to be more effective in assisting those with a learning disability. The report makes a number of recommendations including training as part of the undergraduate curriculum, coordinated resources, link workers, inclusive antenatal and parenting classes for parents with a learning disability, and further research into incidences of breastfeeding in mothers with a learning disability.

Across the grey literature, there is an uneven relationship between inclusivity and accessibility of the resource. All of the materials advocate inclusive practices that better serve people with learning disabilities. However, there is variation in the ease with which resources can be accessed with some, but not all, readily available free of charge. It is unclear how frequently these resources are used as well as if they are acceptable and useful to women with learning disabilities.

The grey literature is highly cross-referential, with particular organisations such as MENCAP and CHANGE emerging as touchstones for information about parenting with a learning disability. Alongside the navigational logic of online resources, this cross-referencing between key organisations creates a sense of shared messages and a consensus about the need for particular kinds of communication focused on clarity and ease of legibility.

The following themes were identified across the three studies included in the review: Support is crucial; Accessibility of information; and

Normality/decision-making is important.

Informal and formal support mechanisms are required to support women to make infant-feeding decisions. Positive and negative experiences of receiving support were reported in the studies by 

There was recognition that a variety of different approaches to the provision of information and infant-feeding resources are required.

Some women found generic information accessible, whilst others preferred easy read. The study by Homeyard and Patelarou (2018) found that whilst 92.7% of NHS Trusts surveyed ( For one woman, this misunderstanding resulted in them exclusively bottle-feeding:

"I said I wanted to do both…I got told that it would mess up the baby's head really… So I just went on bottlefeeding her. (Morgan)." (Malouf et al., 2017, p. 5 ).

Women with learning disabilities want to make their own decisions, with some participants demonstrating having made an informed decision to breastfeed before the baby was born:

"'No, I decided that on my own but I tried to learn as much as I can about it before I gave birth' (Paula)." (Guay et al., 2017, p. 516) .

Understanding the benefits of breastfeeding appeared to have informed infant-feeding decision-making in the Guay, Aunos and with learning disabilities remain almost non-existent within art or popular culture. It is widely understood that seeing positive images of the group to which you belong represented in popular culture enables identification and aspiration (Hall, 1997) , but what constitutes a positive image of maternal femininity, and infant feeding in particular, needs further discussion in the context of learning disability. In short, the historical context within which the grey literature advocates the use of visuals in learning disability resources raises the stakes. The field of representation is not neutral, but inscribed with problematic representations of inability, deficiency and infantilisation.

There is a need to put women with learning disabilities at the centre of the discussion about resources, to hear their voices so that we can understand which image types improve legibility and understanding. However, we found no evaluation of the easy read format in relation to infant feeding information. Throughout the grey literature reviewed there is a strong sense of advocacy on behalf of this community, but little information about their (audio) visual tastes and preferences. However, there is a reference to the coproduction of resources in materials produced by CHANGE. Across the literature, women with learning disabilities are addressed as users and occasionally co-producers, but not as visually literate consumers of materials and resources.

The strength of this review is that, as far as we are aware, it is the first to focus on this important area. It has been undertaken using systematic methods. This study has some limitations. Despite considerable effort, some materials were difficult to access. However, when we were eventually able to access these resources they confirmed our findings about the widespread use of 'easy read'. Two of the published articles were not focussed on infant feeding decisions specifically but were looking at pregnancy more generally. The research was conducted during the Covid-19 pandemic, which meant that all aspects of the screening process were conducted virtually. This proved a limitation in terms of ease of process, but not of rigour. Finally, we are mindful that none of the researchers in our team has a learning disability, which is an issue for inclusivity and limits our understanding of the impact of existing resources on the community they are targeting. We are considering the feasibility of establishing a steering group including people with learning disabilities for the later phases of this project.

This scoping review reveals the paucity of existing research into the resources available to support women with learning disabilities to make infant feeding decisions. It highlights the need for user-centred research into the use of visual materials in these resources. Our recommendation is that further studies in this area put the voices of women with learning disabilities, as well as the health professionals who support them, at the heart of the research.

This study was funded by a UWE, Bristol Vice-Chancellor's Challenge Award, 2020-21. The authors are grateful for the assistance given by UWE Librarians, Philip O'Shaugnessy and Jon Lloyd.

The authors declare that there are no conflict of interests.

The work was jointly conceived in discussion with all authors.

Searches were carried out with the assistance of librarians from UWE, Bristol Library Service. All authors contributed to the search, screening and study selection process. CJ and GL charted the data from the selected studies and carried out the synthesis of the grey literature resources. ED and SD carried out thematic analysis of the published studies. CJ and ED wrote the first draft of the article; SD edited the final version and all contributed to subsequent reviews. All authors approved the final version of the paper.

Data sharing is not applicable to this article as no data sets were generated or analysed during the current study.

http://orcid.org/0000-0002-6157-0918

Sally Dowling https://orcid.org/0000-0002-2336-024X

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