1,721,025 research outputs found
The impact of congenital cytomegalovirus infection among families and caregivers: a qualitative analysis of responses to a public consultation on newborn screening in the UK
No full textObjectivesTo describe the impact associated with congenital cytomegalovirus (cCMV) infection and experiences and perceptions of people with experience of CMV in pregnancy and families / caregivers of children diagnosed with cCMV, who responded to a UK National Screening Committee (UK NSC) public consultation on cCMV screening.MethodsThe public consultation was conducted in 2021-22 on a draft evidence review and was aimed at informing the UK NSC's decision on newborn screening for cCMV. Data were analysed using framework analysis: a subgroup of responses was inductively coded, codes were refined and initial themes identified, before targeted coding of the remainder of the data and identification of final themes and sub-themes.ResultsOf a total 155 responses, 125 (describing 128 pregnancy/child outcomes) contained information relevant to the coding framework and were included. Most (n = 109) described a live birth of a surviving child, of whom 90% (98/109) were living with symptoms or long-term sequelae of cCMV at the time of the response. Two main themes were identified: missed opportunities and emotional impacts attributed by respondents to not screening for cCMV. Many families described delays in their child's cCMV diagnosis, including due to healthcare professionals' lack of awareness of cCMV, and viewed newborn screening as a solution to avoid delays in diagnostic pathways. Diagnostic delays resulted in a lasting sense of injustice and unfairness due to possible missed opportunities to improve outcomes (e.g., through antiviral treatment or early therapies), as well as uncertainty and anxiety.ConclusionsResponses were predominantly from parents and caregivers of children with cCMV who experienced long term disability. They highlight significant gaps in awareness, support and health care for affected children that need addressing, regardless of national screening policy decisions. These responses contribute to the literature on lived experiences of individuals and families affected by cCMV.</p
Exploring the implementation of an educational film within antenatal care to reduce the risk of cytomegalovirus infection in pregnancy: A qualitative study
Full text linkBackground
Congenital cytomegalovirus (CMV) infection is a leading cause of sensorineural hearing loss and neuro-disability in childhood. In the absence of a licensed vaccine, adoption of hygiene-based measures may reduce the risk of CMV infection in pregnancy, however these measures are not routinely discussed with pregnant women as part of National Health Service (NHS) antenatal care in the United Kingdom (UK).
Methods
An exploratory qualitative study was conducted, underpinned by Normalization Process Theory (NPT), to investigate how an educational intervention comprising of a short film about CMV may best be implemented, sustained, and enhanced in real-world routine antenatal care settings. Video, semi-structured interviews were conducted with participants who were recruited using a purposive sample that comprised of midwives providing antenatal care from three NHS hospitals (n = 15) and participants from professional colleges and from organisations or charities providing, or with an interest in, antenatal education or health information in the UK (n = 15).
Findings
Midwives were reluctant to include CMV as part of early pregnancy discussions about reducing the risk of other infections due to lack of time, knowledge and absence of guidance or policies relating to CMV in antenatal education. However, the educational intervention was perceived to be a useful tool to encourage conversations and empower women to manage risk by all stakeholders, which would overcome some identified barriers. Macro-level challenges such as screening policies and lack of official guidelines to legitimise dissemination were identified.
Discussion
Successful implementation of education about CMV as part of routine NHS care in the UK will require an increase in awareness and knowledge about CMV amongst midwives. NPT revealed that ‘coherence’ and ‘cognitive participation’ between service members are vital to imbed CMV education in routine practice. ‘Collective action’ and ‘reflexive monitoring’ is required to sustain service changes
Qualitative interview study exploring the perspectives of pregnant women on participating in controlled human infection research in the UK
No full textIntroduction: pregnant women have been historically excluded from interventional research. While recent efforts have been made to improve their involvement, there remains a disparity in the evidence base for treatments available to pregnant women compared with the non-pregnant population. A significant barrier to the enrolment of pregnant women within research is risk perception and a poor understanding of decision-making in this population.Objective: assess the risk perception and influences on decision-making in pregnant women, when considering whether to enrol in a hypothetical interventional research study.Design: semistructured interviews were undertaken, and thematic analysis was undertaken of participant responses.Participants: twelve pregnant women were enrolled from an antenatal outpatient clinic.Results: participants were unanimously positive about enrolling in the proposed hypothetical interventional study. Risk perception was influenced by potential risks to their fetus and their previous experiences of healthcare and research. Participants found the uncertainty in quantifying risk for new research interventions challenging. They were motivated to enrol in research by altruism and found less invasive research interventions more tolerable.Conclusion: it is vital to understand how pregnant women balance the perceived risks and benefits of interventional research. This may help clinicians and scientists better communicate risk to pregnant women and address the ongoing under-representation of pregnant women in interventional research.</p
Older People's Perspectives on Advance Care Planning: A Qualitative and Quantitative Approach
No full textOlder people's perspectives on advance care planning : a qualitative and quantitative approach
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Providing end of life care to people with dementia in a care home: Are care home staff at risk of emotional burnout?
No full text“Dementia has got nothing to do with sexuality, when you have dementia that sexual side is gone”: Understanding nursing home staff’s narratives on their roles and duties about sexuality in dementia
No full textNavigating the uncertainties and health inequalities in first generation migrant’s readiness to engage in health care screening
No full textBoundary dilemmas in care home worker and resident relationships: Struggling with ‘‘the line’’ when providing end of life care for people with dementia
No full textStruggling to maintain professional boundaries for care home workers providing end of life care for residents with dementia
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