“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

Williams, Denitza; Webber, Jessica; Pell, Bethan; Grant, Aimee; Sanders, Julia; Choy, Ernest; Edwards, Adrian; Taylor, Ann M.; Wu, Meng‐Chieh; Phillips, Rhiannon

doi:10.1016/j.midw.2019.08.002

Cited by 19 publications

(14 citation statements)

References 26 publications

(41 reference statements)

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“…A layer of risk is applied to discourses; no matter what the 'problem' or 'risk', it is portrayed as the mother's fault. This is common in representations of breastfeeding; for the most part [Grant et al, 2019;Williams et al, 2019], it is not the breastfeeding itself that is the problem but the social context in which it is occurring and a patriarchal victim-blaming culture.…”

Section: Discussionmentioning

confidence: 99%

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

Dowling

Grant²

2021

Maternal & Child Nutrition

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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.

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Section: Discussionmentioning

confidence: 99%

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

Dowling

Grant²

2021

Maternal & Child Nutrition

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“…The use of participatory approaches such as timelines in qualitative research can empower participants by allowing them to navigate the conversation, increase their level of comfort in discussing sensitive topics, provide positive moments and opportunities for closure (Goldenberg et al, 2016; Kolar et al, 2015). Members of our team have successfully used this method in both face‐to‐face and telephone interviews with women with autoimmune rheumatic diseases to discuss pregnancy planning, pregnancy and early parenting, eliciting rich narratives (Phillips et al, 2018; Williams et al, 2019).…”

Section: The Studymentioning

confidence: 99%

Engaging and supporting women with chronic kidney disease with pre‐conception decision‐making (including their experiences during COVID 19): A mixed‐methods study protocol

Phillips

McLaughlin

Williams

et al. 2021

Journal of Advanced Nursing

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Aim To report a protocol for a qualitative study to better understand the key factors that influence decision making about pregnancy from women's perspectives and to use these data to develop a theoretical model for shared decision‐making tools for the multiple stakeholders. Design Mixed‐method design using online surveys (with validated components) and purposively sampled follow‐up semi structured interviews. Methods Funded from September 2020 for 12 months. Online surveys of adult women (aged 18–50) identified via all Wales kidney database (n ≥ 500), additional recruitment through multidisciplinary healthcare professionals, relevant third sector organizations and social media. Follow‐up in‐depth qualitative interviews with n = 30 women. Linear regression models to identify associations between shared decision‐making preferences and clinical and psychosocial variables. Qualitative interviews will use a visual timeline task to empower women in taking control over their narratives. Qualitative data will be fully transcribed and analysed thematically, based around a chronological and theoretical (theoretical domains framework) structure that maps out key challenges and opportunities for improved decision support in the care pathway. Visual timelines will be used during stakeholder consultation activities, to enable us to co‐create a map of current support, gaps in provision, and opportunities for interventions. Quantitative data will be analysed descriptively to characterize our cohort. We will assemble a multidisciplinary shared decision‐making intervention development group and provide ongoing stakeholder consultation activities with patient and public representatives. Discussion Outcomes will support new learning into; the ways women's knowledge of kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and how they weigh up the pros and cons of starting a family. Impact Evidence will inform the design of new shared decision‐making tools to better support women with the complex and often emotional decisions about having children while living with kidney disease.

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“…Women of reproductive age who have autoimmune rheumatic diseases (ARDs) such as rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) have expressed a need to be better supported with making decisions about pregnancy (1)(2)(3). Many women with ARDs will have positive pregnancy and parenting outcomes, but there are risks involved that need to be considered, including the potential effects of the disease itself and some diseasemodifying treatments on fertility, pregnancy and breastfeeding (1,(4)(5)(6). Women with ARDs want their motherhood identities and associated preferences to be taken into account in decisions about their healthcare (2).…”

Section: Introductionmentioning

confidence: 99%

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

Williams

Pell

Grant

et al. 2022

Preprint

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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.

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“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

Cited by 19 publications

References 26 publications

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

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

Engaging and supporting women with chronic kidney disease with pre‐conception decision‐making (including their experiences during COVID 19): A mixed‐methods study protocol

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

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