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Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England

ABSTRACT: Objective To explore health professionals’ experiences of communicating positive newborn bloodspot screening (NBS) results, highlight differences, share good practice and make recommendations for future research. Design Qualitative exploratory design was employed using semi-structured interviews Setting Three National Health Service provider organisations in England Participants Seventeen health professionals involved in communicating positive newborn bloodspot screening results to parents for all nine conditions currently included in the newborn bloodspot screening programme in England. Results Findings indicated variation in approaches to communicating positive newborn bloodspot screening results to parents, largely influenced by resources available and the lack of clear guidance. Health professionals emphasised the importance of communicating results to families in a way that is sensitive to their needs. However, many challenges hindered communication including logistical considerations; difficulty contacting the family and other health professionals; language barriers; parental reactions; resource considerations; lack of training; and insufficient time. Conclusion Health professionals invest a lot of time and energy trying to ensure communication of positive newborn bloodspot screening results to families is done well. However, there continues to be great variation in the way these results are communicated to parents and this is largely influenced by resources available but also the lack of concrete guidance. How best to support health professionals undertaking this challenging and emotive task requires further exploration. We recommend evaluation of a more cohesive approach that meets the needs of parents and staff while being sensitive to the subtleties of each condition. Trial registration number ISRCTN15330120

SUBMITTER: Chudleigh J

PROVIDER: S-EPMC7534703 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Project description:ObjectiveTo explore current communication practices for positive newborn screening results from the newborn bloodspot screening (NBS) laboratory to clinicians to highlight differences, understand how the pathways are implemented in practice, identify barriers and facilitators and make recommendations for future practice and research.DesignA qualitative exploratory design was employed using semi-structured interviews.SettingThirteen NBS laboratories in England.ParticipantsSeventy-one clinicians; 22 NBS laboratory staff across 13 laboratories and 49 members of relevant clinical teams were interviewed.ResultsAssurance of quality and consistency was a priority for all NBS laboratories. Findings indicated variation in approaches to communicating positive NBS results from laboratories to clinical teams. This was particularly evident for congenital hypothyroidism and was largely influenced by local arrangements, resources and the fact individual laboratories had detailed standard operating procedures for how they work. Obtaining feedback from clinical teams to the laboratory after the child had been seen could be challenging and time-consuming for those involved. Pathways for communicating carrier results for cystic fibrosis and sickle cell disease could be ambiguous and inconsistent which in turn could hamper the laboratories efforts to obtain timely feedback regarding whether or not the result had been communicated to the family. Communication pathways for positive NBS results between laboratories and clinical teams could therefore be time-consuming and resource-intensive.ConclusionThe importance placed on ensuring positive NBS results were communicated effectively and in a timely fashion from the laboratory to the clinical team was evident from all participants. However, variation existed in terms of the processes used to report positive NBS results to clinical teams and the people involved. Variant practice identified may reflect local needs, but more often reflected local resources and a more consistent 'best practice' approach is required, not just in the UK but perhaps globally.Trial registration numberISRCTN15330120.

Project description:Tuberculosis cohort audit (TBCA) was introduced across the North West (NW) of England in 2012 as an ongoing, multidisciplinary, systematic case review process, designed to improve clinical and public health practice. TBCA has not previously been introduced across such a large and socioeconomically diverse area in England, nor has it undergone formal, qualitative evaluation. This study explored health professionals' experiences of the process after 1515 cases had been reviewed.Qualitative study using semistructured interviews. Respondents were purposively sampled from 3 groups involved in the NW TBCA: (1) TB nurse specialists, (2) consultant physicians and (3) public health practitioners. Data from the 26 respondents were triangulated with further interviews with key informants from the TBCA Steering Group and through observation of TBCA meetings.Interview transcripts were analysed thematically using the framework approach.Participants described the evolution of a valuable 'community of practice' where interprofessional exchange of experience and ideas has led to enhanced mutual respect between different roles and a shared sense of purpose. This multidisciplinary, regional approach to TB cohort audit has promoted local and regional team working, exchange of good practices and local initiatives to improve care. There is strong ownership of the process from public health professionals, nurses and clinicians; all groups want it to continue. TBCA is regarded as a tool for quality improvement that improves patient safety.TBCA provides peer support and learning for management of a relatively rare, but important infectious disease through discussion in a no-blame atmosphere. It is seen as an effective quality improvement strategy which enhances TB care, control and patient safety. Continuing success will require increased engagement of consultant physicians and public health practitioners, a secure and ongoing funding stream and establishment of clear reporting mechanisms within the public health system.

Project description:BACKGROUND:The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life. METHODS:Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. RESULTS:Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use. CONCLUSIONS:The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

Project description:BackgroundSymptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.MethodsThe PeolcPSP data (n =?1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach.ResultsFive themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.ConclusionsThis study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

Project description:ObjectivesIn order to develop a better understanding of students' access to mental health services, we explored the experiences of health care professionals interacting with university students with mental health problems.MethodsWe interviewed 23 professionals working across university advice and counselling services, NHS general practice, crisis, and psychological services in North and East London between June 2022 and January 2023. Our approach drew on reflexive thematic analysis and the principles of abductive analysis. The notion of candidacy - that is, how different needs are deemed deserving of health service attention - was particularly helpful to our understanding of the ongoing phenomenon of interest in the data.ResultsEach student's access to mental health support was highly contingent on the student's dynamic social context and the pressures and organisation of the local health system. Professionals described how different students viewed different needs as deserving of health service attention. Which students reached the professional's service depended on the resources and relationships a student could draw upon, and the service's relative permeability. Once there, what action professionals took was strongly influenced by the professional's service expertise, resource constraints, the relationships the professional's service had with other organisations, the students' wishes, and whether students regarded treatment offers as acceptable.ConclusionsCandidacy offers a useful lens to view university students' access to mental health support. Access appears to be an increasingly intricate task for students, given the fragmented service landscape, surging demand for mental health care and challenges of emerging adulthood. Our findings suggest that policy goals to increase use of mental health services are unlikely to improve outcomes for students without policy makers and health systems giving holistic consideration of inter-service relationships and available resources.

Project description:BackgroundThe number of remote video consultations between doctors and patients has increased during the last few years and especially during the COVID-19 pandemic. The health care service is faced with rising rates of chronic illness and many patients who are more confident in self-management of their illnesses. In addition, there is an improved long-term outlook for serious conditions, such as cancer, that might require flexibility in everyday life.ObjectiveThis study aimed to investigate how medical doctors in the outpatient clinic use and experience the use of video consultations with hematological patients, with a focus on relational and organizational aspects.MethodsThe study was designed as an explorative and qualitative study. Data were collected via participant observations and focus group interviews with medical doctors.ResultsThe study identified possibilities and barriers in relation to adapting to the alternative way of meeting patients in the clinical setting. One of the main findings in this study is that the medical doctors were afraid that they missed important observations, as they were not able to perform a physical examination, if needed. They also emphasized that handshake and eye contact were important in order to get an overall impression of the patient's situation. It also became clear that the medical doctors used body language a lot more during video consultation compared with consultation in a physical setting. The medical doctors found the contact with the patients via the screen to be good, and the fact that the technology was working well made them feel comfortable with the video consultation.ConclusionsIn this study, we found that the medical doctors were able to maintain good contact with the patients despite the screen and were able to assess the patients in a satisfying manner. However, there were still uncertainties among some doctors about the fact that they could not examine the patients physically. New knowledge about how to use gestures and body language during video consultation was obtained.

Project description:Background: The Mental Capacity Act (2005) of England and Wales described in statute a test to determine whether a person lacked the "mental capacity" to make a particular decision. No large-scale survey has explored experiences of capacity assessment across professional groups. Methods: We administered an opportunistic self-report questionnaire survey of professionals who undertake capacity assessments in England and Wales (n= 611). Topics of interest included; how often and where capacity assessment took place, self-ratings of competency and challenges experienced in assessment, use of psychological testing and concerns about undue influence. We analysed the quantitative responses using a mixed-methods approach using regression methods for the quantitative ratings and a thematic analysis for qualitative data. Results: Our sample included 307/611 (50.2%), social workers, 89/611 (14.6%) psychiatrists, 62/611 (10.1%) nurses, 46/611 (7.5%) clinical psychologists, 30/611 (4.9%) doctors from other medical specialties, 12/611 (2.0%) speech and language therapists and 8/611 (1.3%) solicitors. 53% of these professionals undertook more than 25 capacity assessments per year, with psychiatrists, social workers and nurses undertaking them the most frequently. Most professionals reported high self-ratings of confidence in their assessment skills, although non-psychiatrist doctors rated themselves significantly lower than other groups (p< .005). Most professionals (77.1%) were at least moderately concerned about undue influence, with people with dementia and learning disabilities and older adults considered to be the most at risk. Qualitative themes for challenges in capacity assessment included inter-disciplinary working, complicated presentations and relational issues such as interpersonal influence. Requests for support mainly focused on practical issues. Conclusions: Most professionals feel confident in their ability to assess capacity but note substantial challenges around practical and relational issues. Undue influence is a particularly common concern amongst professionals when working with service users with dementia and learning disabilities which public services and policy makers need to be mindful of.

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Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England

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