scholarly journals A NATIONAL STUDY OF THE EXPERIENCES, INFORMATION NEEDS AND ATTITUDES TO CLINICAL RESEARCH OF PATIENTS LIVING WITH SECONDARY BREAST CANCER IN THE UK

The Breast ◽  
2021 ◽  
Vol 59 ◽  
pp. S42-S43
Author(s):  
Lesley Stephen ◽  
Janet Dunn ◽  
Carlo Palmieri ◽  
Claire Balmer
2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kathy Seddon ◽  
Jim Elliott ◽  
Miriam Johnson ◽  
Clare White ◽  
Max Watson ◽  
...  

Abstract Background The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. The UK Standards provide a benchmark which researchers should aim to achieve, yet its implementation continues to be a step wise iterative process of change management. A recent evaluation by a regional research group has suggested that our understanding of PI is enhanced through reflection on the UK Standards. We report on the utility of PI in the design, conduct and dissemination of the HIDDen study, a national, multicentre clinical study based across three UK centres. Methods A retrospective review of PI within the HIDDen study was conducted using field notes taken by the lead author from interactions throughout their involvement as a lay representative on the study. Key members of the HIDDen study were interviewed and data analysed to explore adherence to the UK Standards. Results There was universal support for PI across the study management group with genuine inclusivity of lay members of the committee. All six of the UK Standards were met to varying degrees. The greatest opportunities lay in ‘working together’ and ‘support and learning’. There were challenges meeting ‘governance’ with evidence of participation in decision making but less evidence of opportunities in management, regulation, leadership. Conclusion This study concurs with previous research supporting the utility of the Standards in the conduct and evaluation of PI in clinical research. To our knowledge this is the first multi-national study to be evaluated against the UK Standards.


Somatechnics ◽  
2013 ◽  
Vol 3 (1) ◽  
pp. 9-30
Author(s):  
Fiona K. O'Neill

In the UK, when one is suspected of having breast cancer there is usually a rapid transition from being diagnosed, to being told you require treatment, to this being effected. Hence, there is a sense of an abrupt transition from ‘normal’ embodiment through somatechnic engagement; from normality, to failure and otherness. The return journey to ‘embodied normality’, if indeed there can be one, is the focus of this paper; specifically the durée and trajectory of such normalisation. I offer a personal narrative from encountering these ‘normalising interventions’, supported by the narratives of other ‘breast cancer survivors’. Indeed, I havechosento become acquainted with my altered/novel embodiment, rather than the symmetrisation of prosthetication, to ‘wear my scars’,and thus subvert the trajectory of mastectomy. I broach and brook various encounters with failure by having, being and doing a body otherwise; exploring, mastering and re-capacitating my embodiment, finding the virtuosity of failure and subversion. To challenge the durée of ‘normalisation’ I have engaged in somatic movement practices which allow actual capacities of embodiment to be realised; thorough kinaesthetic praxis and expression. This paper asks is it soma, psyche or techné that has failed me, or have I failed them? What mimetic chimera ‘should’ I become? What choices do we have in the face of failure? What subversions can be allowed? How subtle must one be? What referent shall I choose? What might one assimilate? Will mimesis get me in the end? What capacities can one find? How shall I belong? Where / wear is my fidelity? The hope here is to address the intra-personal phenomenological character and the inter-corporeal socio-ethico-political aspects that this body of failure engenders, as one amongst many.


Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 735
Author(s):  
Schoultz Mariyana ◽  
Leung Janni ◽  
Bonsaksen Tore ◽  
Ruffolo Mary ◽  
Thygesen Hilde ◽  
...  

Background: Due to the COVID-19 pandemic and the strict national policies regarding social distancing behavior in Europe, America and Australia, people became reliant on social media as a means for gathering information and as a tool for staying connected to family, friends and work. This is the first trans-national study exploring the qualitative experiences and challenges of using social media while in lockdown or shelter-in-place during the current pandemic. Methods: This study was part of a wider cross-sectional online survey conducted in Norway, the UK, USA and Australia during April/May 2020. The manuscript reports on the qualitative free-text component of the study asking about the challenges of social media users during the COVID-19 pandemic in the UK, USA and Australia. A total of 1991 responses were included in the analysis. Thematic analysis was conducted independently by two researchers. Results: Three overarching themes identified were: Emotional/Mental Health, Information and Being Connected. Participants experienced that using social media during the pandemic amplified anxiety, depression, fear, panic, anger, frustration and loneliness. They felt that there was information overload and social media was full of misleading or polarized opinions which were difficult to switch off. Nonetheless, participants also thought that there was an urge for connection and learning, which was positive and stressful at the same time. Conclusion: Using social media while in a shelter-in-place or lockdown could have a negative impact on the emotional and mental health of some of the population. To support policy and practice in strengthening mental health care in the community, social media could be used to deliver practical advice on coping and stress management. Communication with the public should be strengthened by unambiguous and clear messages and clear communication pathways. We should be looking at alternative ways of staying connected.


2021 ◽  
pp. 096100062098161
Author(s):  
Benedicta Boadi ◽  
George Tesilimi Banji ◽  
Patrick Adzobu ◽  
Stephen Okyere

Health information literacy plays a critical role in self-management practices among patients living with chronic health conditions. However, there are limited studies on information needs among breast cancer patients in Ghana. This paper therefore investigated the information needs of women living with breast cancer in Ghana and how educational status influenced their information needs. The study was conducted in two health facilities in Accra, Ghana (37 Military Hospital and Sweden Ghana Medical Centre). A total of 75 breast cancer patients were conveniently selected from the two health facilities for the study. The instrument used to elicit relevant data for this study was a questionnaire using the survey design. Data was analysed descriptively. The findings of the study revealed that the information needs of the breast cancer patients investigated were centred mainly around treatment and management information and less around preventive information. The patients also ranked diagnostic information as their highest need, followed by physical care information, treatment information, psychosocial information and disease-specific information in that order. Patients with higher education reported higher information need on all the five domains compared to those with lower education. The study therefore recommended that management of health facilities make health information literacy an integral component of their treatment and management of breast cancer.


2021 ◽  
Author(s):  
Thi‐Van‐Trinh Tran ◽  
Camille Maringe ◽  
Sara Benitez Majano ◽  
Bernard Rachet ◽  
Marie‐Christine Boutron‐Ruault ◽  
...  

2021 ◽  
Vol 5 (1) ◽  
pp. 49-53
Author(s):  
Steven Lehrer ◽  
Peter H. Rheinstein

Background: Cognitive problems are common in breast cancer patients. The apolipoprotein E4 (APOE4) gene, a risk factor for Alzheimer’s disease (AD), may be associated with cancer-related cognitive decline. Objective: To further evaluate the effects of the APOE4 allele, we studied a cohort of patients from the UK Biobank (UKB) who had breast cancer; some also had AD. Methods: Our analysis included all subjects with invasive breast cancer. Single nucleotide polymorphism (SNP) data for rs 429358 and rs 7412 was used to determine APOE genotypes. Cognitive function as numeric memory was assessed with an online test (UKB data field 20240). Results: We analyzed data from 2,876 women with breast cancer. Of the breast cancer subjects, 585 (20%) carried the APOE4 allele. Numeric memory scores were significantly lower in APOE4 carriers and APOE4 homozygotes than non-carriers (p = 0.046). 34 breast cancer subjects (1.1%) had AD. There was no significant difference in survival among genotypes ɛ3/ɛ3, ɛ3/ɛ4, and ɛ4/ɛ4. Conclusion: UKB data suggest that cognitive problems in women with breast cancer are, for the most part, mild, compared with other sequelae of the disease. AD, the worst cognitive problem, is relatively rare (1.1%) and, when it occurs, APOE genotype has little impact on survival.


2020 ◽  
Vol 21 (11) ◽  
pp. e510
Author(s):  
Stephen W Duffy ◽  
Peter D Sasieni

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