Mothering at a distance and disclosure of maternal HIV to children in Kingston, Jamaica

Accepted for publication in a forthcoming issue of Population Horizons, an open access peer-reviewed journal by The Oxford Institute of Population Ageing.Existing guidelines (WHO, 2011) advise caretakers and professionals to disclose children’s and their caretakers’ HIV status to children, despite a lack of evidence concerning the potential implications in resource-constrained settings. Our research uses feminist Interpretative Phenomenological Analysis (IPA) to explore the experiences of HIV positive mothers in Kingston, Jamaica, focusing on their lived experiences of talking to their children about maternal HIV. This paper will focus on the concept of mothering at a distance and how this presents additional challenges for HIV positive mothers who are trying to establish emotional closeness in relation to talking to their children about their HIV. Using Hochschild’s concept of emotion work and examples from the interviews, we highlight the difficult contexts informing women’s decisions when negotiating discussions about their HIV. Women may choose full, partial or differential disclosure or children may be told their mother’s HIV status by others. Disclosure policy, we argue, reflects Anglo-Northern constructions of the family and parenting which may not adequately reflect the experiences of poor urban mothers in low and middle income countries. We argue that policy needs to recognise culturally-specific family formations, which, in Jamaica includes absent fathers, mothering at a distance and mothering non-biological children. This article reflects on the experiences of an under-researched group, poor urban Jamaican women practising mothering at a distance, using a novel methodological approach (IPA) to bring into relief unique insights into their lived experiences and will contribute to the global policy and research literature on HIV disclosure. Keywords: Feminist IPA, HIV disclosure, mothering, emotion workPeer reviewedFinal Accepted Versio

Caseload midwifery in a multi-ethnic community: The women's experiences

Objective: To evaluate caseload midwifery in a relatively deprived and ethnically diverse inner-city area. Design and setting: Semi-structured interviews were undertaken with 24 women from diverse ethnic backgrounds, 12 of whom had received caseload care and 12 women from an adjacent area who had received conventional maternity care in a large inner-city maternity unit. Framework analysis was adopted drawing on links with the authors’ previous work on women’s views of caseload midwifery. Findings: Key themes from previous work fitted well with the themes that emerged from this study. Themes included ‘knowing and being known’, ‘person-centred care’, ‘social support’, ‘gaining trust and confidence’, ‘quality and sensitivity of care’ and ‘communication’. Key conclusions and implications: Women from this socially and ethnically diverse group of women had similar views and wanted similar care to those in previous studies of caseload midwifery. Many of the women receiving caseload care highlighted the close relationship they had with the midwives and as a result of thisfelt more able to discuss their concerns with them. This has the potential not only for improved quality of care but also improved safety

Continuity of carer – what does it mean and does it matter to midwives and birthing women?

This paper discusses key themes from a large-scale, long-term multi-perspective evaluation of caseload midwifery practice in the United Kingdom (UK). Caseload practice was introduced in several UK settings, on a pilot scale, following the publication of Changing Childbirth intended to put into practice its core principles of continuity, choice and control for women. A range of new midwifery practices were piloted and evaluated across the UK. Relatively little attention was given to defining and exploring the nature and meanings of the new models of practice, or to midwives in this new practice context. This has led to difficulty in comparing the impact of different models of practice. We draw on two aspects of our work – an ethnographic study of the experiences of midwives (with and without caseloads) and a study of the women's experiences and responses to care – to explore in greater depth the concepts involved in the caseload model and their meaning for women and for midwives in practice. Interviews were conducted with 40 women and 36 caseload midwives. Other forms of data collection, including questionnaires and observation were used and were analysed thematically using grounded theory principles. Themes emerging included autonomy, confidence, reciprocity and relationship: the idea of knowing and being known. On this basis we have argued that continuity is not an end in itself but an important means towards the end of women-centred care and should be considered in relation to other key themes such as autonomy and environment

Vaginal cones or balls to improve pelvic floor muscle performance and urinary continence in women post partum: A quantitative systematic review

Objectives: The vaginal use of cones or balls aims to increase muscle performance and thereby prevent or treat urinary incontinence. To date, no systematic review has focused on the effectiveness of these devices specifically during the postpartum period. The objectives of this review were: to compare the effectiveness of vaginal cones or balls for improvement of pelvic floor muscle performance and urinary continence in the postpartum period to no treatment, placebo, sham treatment or active controls; to gather information on effect on perineal descent or pelvic organ prolapse, adverse effects and economical aspects. Design: Quantitative systematic review Data Sources: 14 scientific databases (including PubMed and CINAHL) and the world-wide web; experts were contacted for published and unpublished data. Review Methods: Studies had to be randomised/quasi-randomised trials and have female participants up to one year after childbirth. The intervention is compared to no treatment, placebo, sham treatment or active controls. Outcome measures relate to pelvic floor muscle performance or urinary incontinence. Studies were selected, “risk of bias” assessed, and data extracted by two reviewers independently with inter-reviewer agreement. Main Findings: One study met the inclusion criteria; its original data were re-analysed. In an intention-to-treat analysis, compared with the control group, the cone group showed a statistically significant lower rate of urinary incontinence; compared with the exercise group, the prevalence was similar. However, the validity of the analysis is limited. Conclusions and implications: The evidence gained from this systematic review is very limited. The use of cones may be helpful for urinary incontinence after childbirth, but further research is needed

Vibrating vaginal balls to improve pelvic floor muscle performance in women after childbirth: Preliminary results (recruitment and survey) of a randomised controlled feasibility trial

Background: Vibrating vaginal pelvic floor training balls are available in Austria and Germany to enhance women’s pelvic floor muscles and thus prevent urinary incontinence and other pelvic floor problems following childbirth. Nonetheless, there is currently little empirical knowledge to substantiate their use or assess their relative effectiveness in comparison to current standard care, which involves pelvic floor muscle exercises [1]. Aims/research question: This feasibility trial aims at assessing practical issues and feasibility of a future randomised controlled trial (RCT) to determine the effectiveness of vibrating vaginal pelvic floor training balls for postpartum pelvic floor muscle rehabilitation, at monitoring harms of the experimental intervention, and at exploring women´s perspectives on and experiences with the interventions and the trial [2]. Methods: Design: Single blind, randomised controlled feasibility trial with two parallel groups. 56 women from six weeks until six months postpartum are recruited in Vienna and randomised into one of two intervention groups to use either vibrating vaginal balls or a comparator pelvic floor muscle exercises for 12 weeks. As this is a feasibility study, study design features (recruitment, selection, randomisation, intervention and concordance, retention, data collection methods/tools, sample size calculation for full trial) are assessed, and participants’ views and experiences are surveyed. Tested outcome measure, collected before and after the intervention, is pelvic floor muscle performance as reported by participants and measured by perineometry by a blinded assessor. Descriptive and inferential statistics and content analysis serve the preparation of the future trial. Results: The results of this feasibility trial will inform the design and conduct of a full randomised controlled trial and provide insight into the experiences of women regarding the interventions and study participation. At the conference, preliminary results concerning recruitment and participants´ opinion and experiences will be presented. Relevance: Knowledge about pelvic floor muscle rehabilitation after childbirth enables midwives to promote women´s pelvic floor health. Recommendations/conclusions: Recommendations/conclusions of this ongoing study will be available at the conference and focus on the feasibility of the planned RCT and on midwifery practice. Ethical considerations: Approved by the ethics committees of the Medical University of Vienna and City University London. Trial registration: NCT02355327. Financing: This is a PhD project, funded by a City University London Scholarship

Barriers to women's access to alongside midwifery units in England

Background: Alongside midwifery units (AMUs) are managed by midwives and proximate to obstetric units (OUs), offering a home-like birth environment for women with straightforward pregnancies. They support physiological birth, with fast access to medical care if needed. AMUs have good perinatal outcomes and lower rates of interventions than OUs. In England, uptake remains lower than potential use, despite recent changes in policy to support their use. This article reports on experiences of access from a broader study that investigated AMU organisation and care. Methods: Organisational case studies in four National Health Service (NHS) Trusts in England, selected for variation geographically and in features of their midwifery units. Fieldwork (December 2011 to October 2012) included observations (>100 h); semi-structured interviews with staff, managers and stakeholders (n = 89) and with postnatal women and partners (n = 47), on which this paper reports. Data were analysed thematically using NVivo10 software. Results: Women, partners and families felt welcome and valued in the AMU. They were drawn to the AMUs’ environment, philosophy and approach to technology, including pain management. Access for some was hindered by inconsistent information about the existence, environment and safety of AMUs, and barriers to admission in early labour. Conclusions:Key barriers to AMUs arise through inequitable information and challenges with admission in early labour. Most women still give birth in obstetric units and despite increases in the numbers of women birthing on AMUs since 2010, addressing these barriers will be essential to future scale-up

Empowering change: Realist evaluation of a Scottish Government programme to support normal birth

Objective: Midwife-led care has consistently been found to be safe and effective in reducing routine childbirth interventions and improving women’s experience of care. Despite consistent UK policy support for maximising the role of the midwife as the lead care provider for women with healthy pregnancies, implementation has been inconsistent and the persistent use of routine interventions in labour has given rise to concern. In response the Scottish Government initiated Keeping Childbirth Natural and Dynamic, a maternity care programme that aimed to support normal birth by implementing multi-professional care pathways and making midwife-led care for healthy pregnant women the national norm. Design: The evaluation was informed by realist evaluation. It aimed to explore and explain the ways in which the KCND programme worked or did not work in different maternity care contexts. Methods: The evaluation was conducted in three phases. In phase one semi- structured interviews and focus groups were conducted with key informants to elicit the programme theory. At phase two, this theory was tested using a multiple case study approach. Semi-structured interviews and focus groups were conducted and a case record audit was undertaken. In the final phase the programme theory was refined through analyses and interpretation of the data. Setting and participants: The setting for the evaluation was NHS Scotland. In phase one, 12 national programme stakeholders and 13 consultant midwives participated. In phase two case, studies were undertaken in three health boards; overall 73 participants took part in interviews or focus groups. A case record audit was undertaken of all births in Scotland during one week in two consecutive years before and after pathway implementation. Findings: Government and health board level commitment to, and support of, the programme signalled its importance and facilitated change. Consultant midwives tailored change strategies, using different approaches in response to the culture of care and inter-professional relationships within contexts. In contexts where practice was already changing KCND was seen as validating and facilitating. In areas where a more medical culture existed there was strong resistance to change from midwives and medical staff and robust implementation strategies were required. Overall the pathways appeared to enable midwives to achieve change. Key conclusions: Our study highlighted the importance of those involved in a change programme working across levels of hierarchy within an organisation and from the macro-context of national policy and institutions to the meso-context of regional health service delivery and the micro-context of practitioner’s experiences of providing care. The assumptions and propositions that inform programmes of change, which are often left at a tacit level and unexamined by those charged with implementing them, were made explicit. This examination illuminated the roles of the three key change mechanisms adopted in the KCND programme - appointment of consultant midwives as programme champions, multidisciplinary care pathways, and midwife-led care. It revealed the role of the commitment mechanism, which built on the appointment of the local change champions. The analysis indicated that the process of change, despite these clear mechanisms, needed to be adapted to local contexts and responses to the implementation of KCND. Implications for practice: Initial formative evaluation should be conducted prior to development of complex healthcare programmes to ensure that 1. The interventions will address the changes required 2. Key stakeholders who may support or resist change are identified 3. Appropriate facilitation strategies are developed tailored to context

'Oh no, no, no, we haven't got time to be doing that': Challenges encountered introducing a breast-feeding support intervention on a postnatal ward

Objective: to identify elements in the environment of a postnatal ward which impacted on the introduction of a breast-feeding support intervention. Design: a concurrent, realist evaluation including practice observations and semi-structured interviews. Setting: a typical British maternity ward. Participants: five midwives and two maternity support workers were observed. Seven midwives and three maternity support workers were interviewed. Informed consent was obtained from all participants. Ethical approval was granted by the relevant authorities. Findings: a high level of non-compliance with the intervention was driven by a lack of time and staff, and the ward staffs' lack of control of the organisation of their time and space. This was compounded by a propensity towards task orientation, workload reduction and resistance to change - all of which supported the existing medical approach to care. Limited support for the intervention was underpinned by staff willingness to reconsider their views and a widespread frustration with current ways of working. Key conclusions: this small, local study suggests that the environment and working conditions on a typical British postnatal ward present significant barriers to the introduction of breast-feeding support interventions requiring a relational approach to care. Implications for practice: midwives and maternity support workers need to be able to control their time and space, and feel able to provide the relational care they perceive that women need, before breast-feeding support interventions can be successfully implemented in practice. Frustration with current ways of working, and a willingness to consider other approaches, could be harnessed to initiate change that would benefit health professionals and the women and families in their care. However, without appropriate leadership or facilitation for change, this could alternatively encourage learned helplessness and passive resistance