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Power wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelines. Stage at which riluzole treatment prolongs survival in patients with amyotrophic lateral sclerosis: a retrospective analysis of data from a dose-ranging study. Support needs and interventions for family caregivers of patients with amyotrophic lateral sclerosis (ALS): a narrative review with report of telemedicine experiences at the time of COVID-19 pandemic. [Extracted from the article]

Background: Research nurses, midwives and allied health professionals are members of an important emergent profession delivering clinical research and, in the United Kingdom, have been the focus of considerable investment by the National Institute for Health Research (NIHR). This paper considers the experiences of research nurses, midwives and allied health professionals in relation to professional identity work, recognizing these are coproduced alongside others that they interact with (including patients, clinical staff and other research staff).Methods: Semi-structured interviews were conducted with 45 nurses, midwives and allied health professionals in the UK about their experiences of working in research delivery. Interviews were transcribed verbatim and thematically coded and analysed.Results: Our analysis highlights how research nurses, midwives and allied health professionals adjust to new roles, shift their professional identities and undertake identity work using uniforms, name badges and job titles as they negotiate complex identities.Conclusions: Research nurses, midwives and allied health professionals experience considerable challenges as they enter and transition to a research delivery role, with implications for their sense of professional identities. A change in the work that they undertake and how they are (or perceive they are) viewed by others (including clinical non-research colleagues and patients) has implications for their sense of professional and individual identity. The tensions involved extend to their views on symbols of professional identity, such as uniforms, and as they seek to articulate and demonstrate the value of their conjoined role in research and as a healthcare professional, within the unfolding landscape of health research. We embed our study findings in the context of the newly emerging clinical research practitioner workforce, which further exacerbates and complicates the role and identity complexity for nurses, midwives and allied health professionals in research delivery. [ABSTRACT FROM AUTHOR]

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We undertook a qualitative interview study of women's and their partners' experiences of severe pregnancy complications. Across the care pathway, women identified a number of examples of good practice that made an important difference to their recovery. There were some areas where women felt the quality of care could be improved, for example during points of transition between higher level and routine care or from hospital to the community. Longer-term support and counselling were felt to be particularly valuable, and yet not always universally available. These results emphasise the importance of integrated quality care across the whole patient pathway. [ABSTRACT FROM AUTHOR]

Women are actively encouraged to educate themselves about pregnancy from formal sources (e.g., information leaflets, antenatal classes, books). In addition, informal stories of pregnancy and birth are routinely told between women. However, increased prenatal testing means that more fetuses are diagnosed with abnormalities, shifting the information requirements during pregnancy. Traditional sources of information cannot cover all possible outcomes, and the Internet is beginning to fill this gap. In this article, we draw from interviews about experiences of antenatal screening and pregnancy to explore how the Internet provides a unique resource for problematic pregnancies. It allows access to information about rarer conditions beyond standard pregnancy texts, as well as personal narratives about conditions. Learning how others have coped or are coping in similar situations can help alleviate feelings of isolation, and also places women back in a familiar territory of shared pregnancy narratives. [ABSTRACT FROM AUTHOR]

Background: England is the only country in the world that currently has universal population screening for haemoglobin disorders through linked antenatal and newborn screening. Little is known about the acceptability of such screening.Aim: To explore parents' experiences of, and attitudes towards, new universal genetic screening for haemoglobin disorders.Design Of Study: Narrative interview study.Setting: Primary and community care settings across England.Method: Narrative interviews were undertaken with a maximum variation sample of 39 people who had experienced gene-carrier identification through antenatal and newborn screening for sickle cell, thalassaemia, and other haemoglobin variants within the previous 2 years.Results: Most parents were unaware screening had occurred or had given it little consideration and so were surprised or shocked by results. However, they were glad to learn of their carrier status, reproductive genetic risk, or their newborn's carrier status. Participants emphasised that antenatal screening should happen as early as possible. Many would rather have known their carrier status before pregnancy or before entering a relationship. Although most were satisfied with the information they received, significant misunderstandings remained. There were culturally diverse attitudes towards prenatal diagnosis and termination. These procedures were acceptable to some parents with strong religious beliefs, including Christians and Muslims.Conclusion: Parents support screening for haemoglobin disorders but need to be better informed and better prepared for results and what they mean. Sensitivity to patient diversity in attitudes and choices is also required. Universal screening for genetic reproductive risk will increasingly involve generalists, particularly in primary care, presenting opportunities for screening before or earlier in pregnancy, which is likely to be welcomed by patients. [ABSTRACT FROM AUTHOR]

This article presents findings from a wider UK Department of Health funded evaluation of English Primary Care Groups (PCGs) and Trusts (PCTs). It presents qualitative research into the experiences of general practitioners (GPs) in these PCG/Ts and explores the extent to which GPs manage, or are managed by, these new organizations. Using the framework of stratification theory, the paper explores whether there is any evidence to suggest PCTs will strengthen collective medical control over resource allocation whilst fending off management control of clinical decision-making. It also examines whether individual GPs not involved at board level feel a loss of control over decisions and their own clinical practice. A stratified random sample of 20 GPs was selected for in-depth interview. The in-depth interviews were designed to capture the full complexity and variety of GPs' experiences that routinely available data could not capture. GPs were anxious that clinical decisions were, or could, be overridden by other concerns such as cost control. The extent to which primary care professionals leading PCGs and PCTs could fend off managerial control was doubted. However, whilst GPs felt under threat, this was more an anticipated threat than a reality. GPs within PCG/Ts seem prepared to accept a degree of standardization if they feel that this is consistent with good clinical care. However, although there was the impression of greater central control, PCGs and PCTs and Government policies did not appear to have made an impression on clinical autonomy. [ABSTRACT FROM AUTHOR]

Background: Female Genital Mutilation (FGM) is all practices involving cutting, alteration or injury to the female genitalia for non-medical reasons. It is a form of violence against women and children, with no benefits and many harms. In 2014, the UK Government committed to working to eliminate FGM. Steps taken towards this aim included creation of educational and safeguarding resources for professionals, and legislative changes including a mandatory reporting duty for professionals in England and Wales (where if a girl under 18 discloses or is found on examination to have FGM then the professional is mandated to report this to the police), and an FGM Enhanced Dataset applicable to NHS organisations in England requiring the submission of personal data about women and girls who have had FGM to NHS Digital. To date, compliance with dataset returns from primary care services have been low. This report describes using patient and public involvement (PPI) to identify research and service priorities to support communities affected by FGM. Methods: We held a series of PPI events (4 focus groups, and a multi-agency seminar) in 2015–2016, following the introduction of these legislative changes, speaking to community members, and professionals involved in their care. We asked participants to consider what they identified as research, knowledge and service priorities to support communities affected by FGM. Results: The impact of these legislative and reporting requirements on the trust needed for community members to seek to consult health services was identified as important for further research. Priorities for service development were holistic services, that met a woman’s needs throughout her lifecourse. Participants emphasised the importance of understanding how to listen, involve and utilise community voices in developing education for professionals, designing services, and developing policy. Conclusions: There was a desire for change to develop from within affected communities; any learning and resources need to be co-created and constructed in such a way that they can be effectively shared between women, communities, and professionals. Questions remain about how to define community consultation, how to recognise when it was adequate, and how to hear beyond community activists to hear a wider range of voices. [ABSTRACT FROM AUTHOR]