Understanding HELLP Syndrome in the South African context: a feminist study

Philosophiae Doctor - PhDThis thesis is about HELLP Syndrome (hemolysis, elevated liver enzymes, low platelet count in pregnancy): a devastating maternal hypertensive complication that results in multi-system changes that can rapidly deteriorate into organ failure and death. Despite rapid advancesin medical technology and medical science this disease continues to take the lives of women and their infants. The only effective intervention for this disorder is immediate termination irrespective of the gestational stage of the pregnancy. The primary objective of this thesis was to explore the subjective experiences and meaningmaking processes of women in and through their high-risk pregnancies. This objective crystallised into the following aims: to facilitate and listen to the voices of women who were HELLP Syndrome survivors; to explore the reported bodily, psychological and emotional experiences of HELLP Syndrome survivors; to understand the role medical intervention and biomedical discourses play in these women’s experiences and finally to explore the subjective experiences of HELLP Syndrome in the context of traditionallyheld notions of motherhood. The study was couched in a feminist poststructuralist epistemology. A material-discursive framework which comprised phenomenological and poststructuralist theorising was usedin an attempt to understand both the lived experiences as well as the discursively constructed nature of those subjective experiences. Thus the analysis encompassed both a broadly phenomenological framework to understand the lived experiences of HELLP Syndrome, and a discourse analysis to explore the meaning-making processes of participants in relation to larger social discourses, in particular the dominant biomedical and motherhood discourses. A qualitative approach using in depth semi-structured interviews was utilisedto gather data. Eleven participants from very diverse backgrounds consented to be part of thisstudy. The findings of the study highlighted the immense trauma, difficulties and challenges participants faced in these high-risk situations. What was evident from the analysis was that their experiences were so diverse and werecompletely shaped by the severity of the disorder and the gestational stage of the pregnancy. Some women ended up in the Intensive Care Units (ICU) and had near-death experiences, some had very premature babies, while some of the participants lost their babies during the process. With regards to the emotional, psychological and corporeal aspects of the disorder,participants described their situations as a disaster, painful and difficult. Due to the rapid deterioration of symptoms, they described the tempo of these events as a whirlwind in which they felt they had no control. Emotions ranged from shock, total disbelief and surprise to anger, helplessness and powerlessness. Lacking knowledge and access to appropriate information further compounded the situation for participants. Theparticipants who had premature babies found the Neonatal Intensive Care Unit experience (NICU) extremely challenging and stressful. A discourse analysis revealed that women’s talk was shaped by the disciplinary frameworks oftechnocratic medicine and patriarchal notions of gender. Participants’ discourses about their encounters inthe medical context werelocated in, and shaped by, the structure of health care in our country. In this regard binaries (like private versus public health care, women versus men and nurses versus doctors) were evident. Furthermore their hospital stay reflected their experiences in the Intensive Care (ICU) and the Neonatal Intensive Care Units (NICU) both of which are highly technologically orientated and managed. Biomedical discourses that filtered through the participants’ talk were: medicine as indisputable truth;mechanistic model of the body as machine; medical doctors as gods and the foetus as ‘super subject’. Discourses of risk were inevitably taken up as participants tried to make sense of both their current pregnancies and the potential ones to follow. The passage into motherhood for these participants was dependent on whether they had live babies or not. For those who had live babies it was a difficult time as they had to contend with their own recovery as well as the prematurity of their infants. The NICU experience was described as tiring, trying and cumbersome. For mothers who lost their babies it was a time of profound sadness and loss coupled to the notion that motherhood itself was lost. This loss of their children symbolised broken dreams, severed connections and a powerful taboo. In addition, discourses in which motherhood was naturalised and normalised saturated their talk and framed their experience in a narrative of deficit and failure. The ideologies of mother blame and the ‘all responsible’ mother were pervasive in their discussions. In conclusion, this high-risk situation represented a time of tremendous uncertainty and unpredictability for all participants and was powerfully shaped by dominant discourses about motherhood and the biomedical discursive and institutional framework in which participants were subjugated. The study thus highlights how the HELLP syndrome experience illuminates the erasure of women’s subjectivities while the foetus/infants’ life takes precedence. This has significant implications for scholarship in general and feminist scholarship in particular and highlights the need for this type of engagement in an area that has remained on the periphery of feminist research.South Afric

Abused women's understandings of intimate partner violence and the link to intimate femicide

In this article, we explore how women survivors of intimate partner violence understand the abuse they endured and the possible link to intimate femicide. This is a qualitative study based on a feminist poststructuralist perspective. Seven South African women, aged 23 to 50 years, with a history of different manifestations of Intimate Partner Violence (IPV) participated in open-ended interviews. The data was analyzed by means of discourse analysis. In their explanations, the women constructed gendered identities, which reflected contradictory and ambiguous subjective experiences. The women's understandings were filtered through the particular social context in which their abusive experiences occurred. The findings highlighted that contemplating femicide was too threatening, and consequently participants drew on discourses of femininity, romantic love, and others to justify their remaining in their violence-ridden relationships. It emphasizes the need for additional engagement in women's understandings of intimate femicide, as women who live in abusive relationships have largely been consigned to the periphery.IBS

An exploration of the challenge's fathers' experience when parenting a child that presents with dyspraxia

Purpose: Due to the limited research on fatherhood and dyspraxia, this study is critical as it highlights the challenges that fathers face in parenting a child that presents with dyspraxia. The purpose of this study is to inform various interventions while simultaneously highlighting a largely neglected area of research. Design/methodology/approach: The principal aim of this study was to explore the subjective challenges that fathers experience in parenting a child that presents with dyspraxia in the Cape Metropole area. This study adopted a qualitative approach utilising an exploratory design to understand and provide in-depth information about fathers' subjective experiences of parenting a child that presents with dyspraxia (Mack et al., 2005). Data were collected using semi-structured individual interviews with fathers. Findings: The authors’ findings highlight that fathers' roles are inextricably more complex, shifting between more traditional conceptions such as the provider toward the all giving and nurturing care. Future research would benefit from adopting a more masculinity-focused framework to determine the effect that learning disorders have on constructing and challenging more traditional gendered constructions of what it means to be a man, masculinity and what it means to be a father, fatherhood and fathering. Research limitations/implications: The study was limited to the challenges faced by fathers whose children were engaged in some or other treatment plan. In addition, the study was limited to children who presented with dyspraxia, rather than those who had received an official diagnosis and this relates directly to the obscurity and ambiguity surrounding diagnosis of the disorder itself. Practical implications: The study has shed light in terms of the common features between dyspraxia and that of other developmental disorders. This is further extended to include the comorbidity of this disorder with other learning disabilities. Social implications: Mental health professionals may benefit from identifying the issues raised by fathers within this study and to further aid and support both children and parents in the treatment of dyspraxia. Originality/value: The study has shed much needed light on two very neglected areas – the area of learning disabilities, in particular, the issue of dyspraxia and second, including fathers’ voices in the discussion of their experiences. © 2021, Emerald Publishing Limited

Building on momentum from the global campaigns: An exploration of factors that influenced prioritization of stillbirth prevention at the national level in Uganda

Of the close to 2.6 million stillbirths that happen annually, most are from low-income countries where until recently policies rarely paid special attention to addressing them. The global campaigns that followed called on countries to implement strategies addressing stillbirths and the adoption of recommendations varied according to contexts. This study explored factors that influenced the prioritization of stillbirth reduction in Uganda.The study employed an exploratory qualitative design adopting Shiffman’s framework for political prioritization. Data collection methods included a document review and key informants’ interviews with a purposively selected sample of 20 participants from the policy community. Atlas. Ti software was used for data management while thematic analysis was conducted to analyze the findings

Examining the variations in the implementation of interventions to address stillbirth from the national to subnational levels: Experiences from Uganda

The current global burden of stillbirth disproportionately afects regions such as sub-Saharan Africa, where Uganda is located. To respond to this burden, policies made at the national level were difused from the centre and translated into service delivery at the district level, which is charged with implementation under the decentralization of health services arrangement. Variations emerge whenever policy recommendations are moved from national to subnational levels, with some aspects often lost along the way. Tools are available to facilitate knowledge of determinants of policy and innovation implementation within the healthcare system. However, the extent to which these have been applied to explain variations in implementation of interventions to address stillbirth reduction in Uganda remains scant. The aim of this article was to examine the variations in the implementation of interventions to address stillbirth from the national to the subnational levels in Uganda using the Consolidated Framework for Implementation Research (CFIR)

A systematic review regarding women’s emotional and psychological experiences of high-risk pregnancies

High-risk pregnancy refers to a pregnancy that negatively affects the health of the mother, the baby, or both. High-risk pregnancy evokes a range of emotional and psychological experiences for the expectant mother, and can adversely affect both the mother and the baby’s health. Medical research on high-risk pregnancy abounds, while women’s emotional/psychological experiences are not sufficiently documented, and hence much less attention and/or programming is directed to support women with high risk pregnancies

“These women are making a statement against rape and yet the only thing y’all can focus on is ‘eww they’re naked’”: Exploring rape culture on Facebook in South Africa

Sexual assault on campuses has been identifed as a pervasive public health problem. In April 2016, students across South African universities launched the #Endrapeculture campaign to express their frustration against university policies which served to perpetuate a rape culture. The use of hashtag activism during the protest served to spark online public debates and mobilize support for the protests. This article describes the public reactions to the South African #Endrapeculture protests on the Facebook social media platform. Data was collected through natural observations of comment threads on news articles and public posts on the student protests, and subjected to content analysis. The fndings suggest that the #nakedprotest was successful in initiating public conversations concerning the issue of rape culture. However, the reactions towards the #nakedprotest were divided with some perpetuating a mainstream public discourse which perpetuates rape culture, and others (re)presenting a counter-public that challenged current dominant views about rape culture. Two related main themes emerged: Victim-blaming and Trivialising Rape Culture. Victim-blaming narratives emerged from the commenters and suggested that the protesters were increasing their chances of being sexually assaulted by marching topless

Exploring adversities among parents convicted of killing their children

Experiencing adversities has been associated with the use of violence but this has not been explored with filicide offenders in South Africa. Individual, semi-structured interviews were conducted with 22 parents/stepparents/caregivers convicted of child homicide in South Africa, resulting in 49 in-depth interviews. Data were analyzed by means of grounded theory. Using an ecological framework, this study alludes to the widespread and cumulative nature of violence and trauma experiences within multiple domains of the participants’ lives. The study highlighted the absence of support in the aftermath of experiencing trauma, possibly resulting in these parents lacking resources to mitigate the sequelae of adverse experiences. This study calls for trauma related, mental health components to be integrated into violence interventions and for these to address the impact of trauma at the individual, family, and societal levels, to prevent the transition from victim to offender

Mapping the global scientific research of infant homicide : a descriptive scoping review

This review describes research on the homicide of infants (aged 0-1 year), pertaining to victim and perpetrator characteristics. A search of eighteen databases, yielded fifty-three included articles, of which, thirty-nine were cases studies, two qualitative, and twelve quantitative. The diversity of study methods and shortage of robust, dedicated studies prevented adequate synthesis of the findings. This review, therefore, encourages the development of more targeted research focused on the homicide of infants

The role and attributes of social networks in the provision of support to women after stillbirth: Experiences from Uganda

Communities exert stigma on mothers after stillbirth despite their potential to ofer social support to the grieving family. Maternal healthcare-seeking behaviors are socially reinforced rendering a social network approach vital in understanding support dynamics which when utilized can improve community response to mothers experiencing stillbirth. However, the form and direction of social support for women when in need is not clear. The study explored the role and attributes of women’s social networks in the provision of support to mothers who have experienced a stillbirth in Uganda. An exploratory cross-sectional study design adopting a social network approach was conducted. Data collection following established procedures was conducted on a convenient sample of 17 mothers who had experienced a stillbirth six months before the study. Frequencies and bivariate analysis were conducted to determine the factors infuencing the provision of social support from 293 network members elicited during the alter generation. We then performed a Poisson regression on each of the social support forms and the explanatory variables. Network structure variables were calculated using UCINET version 6 while Netdraw facilitated the visualization of networks