FutureMS cohort profile: a Scottish multicentre inception cohort study of relapsing-remitting multiple sclerosis.

PURPOSE: Multiple sclerosis (MS) is an immune-mediated, neuroinflammatory disease of the central nervous system and in industrialised countries is the most common cause of progressive neurological disability in working age persons. While treatable, there is substantial interindividual heterogeneity in disease activity and response to treatment. Currently, the ability to predict at diagnosis who will have a benign, intermediate or aggressive disease course is very limited. There is, therefore, a need for integrated predictive tools to inform individualised treatment decision making. PARTICIPANTS: Established with the aim of addressing this need for individualised predictive tools, FutureMS is a nationally representative, prospective observational cohort study of 440 adults with a new diagnosis of relapsing-remitting MS living in Scotland at the time of diagnosis between May 2016 and March 2019. FINDINGS TO DATE: The study aims to explore the pathobiology and determinants of disease heterogeneity in MS and combines detailed clinical phenotyping with imaging, genetic and biomarker metrics of disease activity and progression. Recruitment, baseline assessment and follow-up at year 1 is complete. Here, we describe the cohort design and present a profile of the participants at baseline and 1 year of follow-up. FUTURE PLANS: A third follow-up wave for the cohort has recently begun at 5 years after first visit and a further wave of follow-up is funded for year 10. Longer-term follow-up is anticipated thereafter.

Strengthening nursing and midwifery capacity in rural New South Wales, Australia.

A small rural health service and two university schools of nursing joined forces to establish a rural clinical school to advance clinical education and research. The collaboration, while in its infancy, has given rise to outcomes that strength the capacity of nursing and midwifery services in the community.

Enhancing computer literacy and information retrieval skills: A rural and remote nursing and midwifery workforce study.

Nurses and midwives collectively, represent the largest workforce category in rural and remote areas of Australia. Maintaining currency of practice and attaining annual licensure with the Australian Health Practitioners Regulatory Authority (AHPRA) present challenges for individual nurses and midwives and for their health service managers. Engagement with information and communication technologies, in order for geographically isolated clinicians to access ongoing education and training, is considered a useful strategy to address such challenges. This paper presents a pre- and post-test study design. It examines the impact of an online continuing professional development (CPD) program on Australian rural nurses and midwives. The aims of the program were to increase basic skill acquisition in the utilisation of common computer software, the use of the Internet and the enhancement of email communication. Findings from the study demonstrate that participants who complete a relevant CPD program gain confidence in the use of information and communication technologies. Further, increased confidence leads to increased access to contemporary, reliable and important health care information on the Internet, in addition to clinicians adopting email as a regular method of communication. Health care employers commonly assume employees are skilled users of information and communication technologies. However, findings from this study contradict such assumptions. It is argued in the recommendations that health care employees should be given regular access to CPD programs designed to introduce them to information and communication technologies. Developing knowledge and skills in this area has the potential to improve staff productivity, raise health care standards and improve patient outcomes.

In my day II: Reflecting on the transformative potential of incorporating celebrations into the nursing curriculum.

Understanding one's history is a powerful way to build a sense of belonging, identity and connection. Similarly, history learning can be a powerful component in the core curriculum for undergraduate nursing. History learning develops thinking skills transferable to and necessary in nursing practice. Additionally, awareness about the profession's struggles, achievements and enduring concerns is raised and belief that an individual or group can have influence is affirmed. Perseverance, commitment and seeing the big picture gives a nurse's career meaning and purpose. All of these factors can produce a transformed perspective in today's learners, who are often present-focused, isolated and disconnected from the past and the profession. This paper reports an evaluation of a second interactive learning experience held at the University of the Sunshine Coast to celebrate International Nurses Day 2010. In a previous paper, we shared our initial insights after the success of the first event, and now build upon those insights by examining the transformative learning provoked by the experience, from the points of view of students and staff.

Australian Aboriginal kinship: a means to enhance maternal well-being.

BACKGROUND: The relocation of women from their rural communities to birth in a centralised hospital is becoming increasingly common as maternity units close in rural areas of Australia. The significance for Aboriginal women when they are denied the support of kin around the time of birth but have that support re-established postnatally is explored. METHODS: This paper gathered data from multiple sources including in-depth interviews with three Aboriginal mothers and one partner; observational field notes; and during debriefing, the knowledge and experience of an Aboriginal midwife. Thematic analysis was utilised to both explore and critique the collected data. FINDINGS AND DISCUSSION: Aboriginal women are particularly disadvantaged by maternity unit closures in rural areas of the south eastern Australian state of New South Wales (NSW). However, contrary to the expectation that this would result in postnatal mental health problems, the support the Aboriginal participants in this study received from kin may have had a mediating effect which enhanced their well-being and possibly prevented mental ill health. RECOMMENDATIONS: Recommendations relate to strategies and policies that have the potential to increase community governance and feelings of cultural safety for Aboriginal childbearing women living in rural areas. CONCLUSION: While the practice of forcing Aboriginal women to relocate around the time of birth has a negative impact on perinatal health outcomes, kinship support may be a mediating factor.

'Mind you, there's no anaesthetist on the road': women's experiences of labouring en route.

INTRODUCTION: The aim of this article was to learn from women in rural New South Wales (NSW) Australia, their experiences of labouring en route to birth in a centralised maternity unit. METHODS: This qualitative study was exploratory and descriptive. It was part of a larger project that explored women's experiences when they birthed away from their rural communities. Participants were recruited from communities all over rural NSW where a maternity unit had closed. Forty-two female participants and three of their male partners shared their stories of 73 labours and births. This article draws on data collected during in-depth interviews with 12 participants and one partner who shared their experiences of labouring en route to a centralised maternity service. Interviews were audiotaped and transcribed verbatim for the purpose of thematic analysis. Exemplars, using the participants' own words and highlighting story are identified as a tool used for data synthesis and presentation. RESULTS: Two themes were identified. These relate to the way the risk of dangerous road travel is ignored in obstetric risk discourse, and the deprivations experienced when women labour en route. An unexpected finding was the positive nature of one woman's experience of birthing by the side of the road. CONCLUSIONS: Many participants questioned why they needed to risk unsafe road travel when their preference was to labour and birth in their local communities with a midwife.

'You can drop dead': midwives bullying women.

BACKGROUND: This paper describes how women experienced what came to be labelled as 'bullying' by a small number of midwives when they were evacuated from their rural and remote areas of NSW, Australia to a maternity unit to birth. RESEARCH QUESTION: What is the experience of women who are required to travel away from their NSW rural/remote communities to birth? PARTICIPANTS AND METHODS: Forty-two participants together with a number of their partners/support people were interviewed in depth for this qualitative, exploratory study. Upon thematic analysis of the transcribed interviews, an unexpected finding was that four participants (plus one partner) described experiences which were interpreted as bullying, by a small number of midwives working with them. Women identifying as Aboriginal were especially likely to share stories of midwifery bullying. RESULTS, DISCUSSION AND CONCLUSION: Emotional and cultural safety of women must be a prime consideration of midwives. Strategies to reverse power differentials between midwives and women are urgently required to eradicate bullying by any midwife.

Culturally diverse Malayan milieu: experiences and perceptions of RAANC nurses 1955-1960.

The war exploits of Australian Army nurses have been represented in a number of literary sources, but there is a paucity of data about the nurses who served in the Malayan Emergency (1948-1960). Using descriptive interpretive historiography, with a central focus on oral testimony, this paper aims to highlight the culturally rich and diverse environment of Malaya in the 1950s. Semi-structured interviews were conducted with four women from the Royal Australian Army Nursing Corps to expose their experiences and perceptions of the Malayan environment and its people. The information provided by these nurses was subjected to manual thematic analysis resulting in the emergence of a number of themes. One prominent theme, Malaya's cultural diversity, was chosen for this paper because it contained an abundant source of new and rich data. To protect the identities of the informants pseudonyms were used in the presentation of the oral narratives. This approach led to revelations about how Australian women, with limited knowledge or exposure to other cultural groups, engaged in work and leisure time pursuits in Malaya's exotic cultural milieu.

Invisible partners: the Royal Australian Army Nursing Corps pathway to the Malayan Emergency.

This paper highlights the role of women from the Royal Australian Army Nursing Corps who served in the Malayan Emergency. The British administrators of Malaya declared an Emergency in 1948 in response to threats posed by Chinese Communist Terrorists. Australia was slow to support Britain, but in 1955 Australian ground troops, accompanied by six Army nurses were deployed to Malaya. The nurses worked in British Military Hospitals, continuing the traditions of their antecedents; yet their contributions remain hidden from view. The exact number of Australian nurses who served in the Emergency is unknown, because of the poor record-keeping of the Southeast Asian conflicts. However, it is estimated that 33 Australian Army nurses served in Malaya from 1955, with some continuing their service into the early 1960s. The experiences of four of these nurses are revealed in this paper: they are no longer invisible partners.

A safety net: use of pseudonyms in oral nursing history.

This paper explores the use of pseudonyms in a historical study that weaves oral testimony throughout the narrative. The research was undertaken to unveil the experiences of Australian Army nurses in Malaya's Communist insurgency (1948-1960). Thirty-three women from the Royal Australian Army Nursing Corps served in this conflict termed the Malayan Emergency, but only four nurses could be located for this study. After almost fifty years of silence the female nursing voice emerged as the informants spoke at interview of their unique personal and military experiences in Malaya. It is acknowledged that assigning the nurse informants pseudonyms, as opposed to using their names, constitutes a significant deviation from the established traditions of oral history. However, it is argued that the use of pseudonyms provided an opportunity for candid disclosure by the nurses on a range of topics whilst keeping the informants safe from adverse public or military scrutiny.