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Article ; Online: Reimagining authorship guidelines to promote equity in co-produced academic collaborations.

Miles, Sam / Renedo, Alicia / Marston, Cicely

2021 Volume 17, Issue 10, Page(s) 2547–2559

Abstract: Authorship of academic papers is a currency that can bring career advantages in academia and other industries. How authorship should be decided is not always clear, particularly in co-produced research with non-academic collaborators, for which existing ... ...

Abstract	Authorship of academic papers is a currency that can bring career advantages in academia and other industries. How authorship should be decided is not always clear, particularly in co-produced research with non-academic collaborators, for which existing authorship guidelines are largely silent. In this paper, we critically reflect on what constitutes written authorship in the context of co-produced health research. We present examples from our own work to illustrate the argument we make, including publishing a co-authored paper with non-academic partners. We consider questions of what constitutes authorship and how it is mutually understood. We discuss some of the opportunities and limits to participation and how these might translate into academic authorship as a collaborative research output. Finally, we explore the potential of authorship guidelines as a resource for critical reflection on what we mean by co-produced work and how we recognise contributions to global health research. We suggest that authorship guidelines should be adapted to encourage attribution of co-produced research to include non-academic as well as academic collaborators, and we provide a draft guideline for how this might be done.
MeSH term(s)	Authorship ; Global Health ; Humans ; Organizations ; Publishing
Language	English
Publishing date	2021-09-14
Publishing country	England
Document type	Journal Article
ZDB-ID	2234129-8
ISSN	1744-1706 ; 1744-1692
ISSN (online)	1744-1706
ISSN	1744-1692
DOI	10.1080/17441692.2021.1971277
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Community participation is crucial in a pandemic.

Marston, Cicely / Renedo, Alicia / Miles, Sam

Lancet (London, England)

2020 Volume 395, Issue 10238, Page(s) 1676–1678

MeSH term(s)	COVID-19 ; Community Participation ; Coronavirus Infections/epidemiology ; Coronavirus Infections/prevention & control ; Humans ; Pandemics/prevention & control ; Pneumonia, Viral/epidemiology ; Pneumonia, Viral/prevention & control
Keywords	covid19
Language	English
Publishing date	2020-05-04
Publishing country	England
Document type	Journal Article
ZDB-ID	3306-6
ISSN	1474-547X ; 0023-7507 ; 0140-6736
ISSN (online)	1474-547X
ISSN	0023-7507 ; 0140-6736
DOI	10.1016/S0140-6736(20)31054-0
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Article ; Online: Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions.

Collins, Peter J / Renedo, Alicia / Marston, Cicely A

Journal of health psychology

2020 Volume 27, Issue 1, Page(s) 103–118

Abstract: Pain communication in healthcare is challenging. We examine use of pain scales to communicate pain severity via a case study of people with sickle cell disorder (SCD). We show how pain communication involves complex social interactions between patients, ... ...

Abstract	Pain communication in healthcare is challenging. We examine use of pain scales to communicate pain severity via a case study of people with sickle cell disorder (SCD). We show how pain communication involves complex social interactions between patients, healthcare professionals and significant others - none of which are included in pain ratings. Failure to account for relational aspects of pain may cause problems for any patient. For SCD, mutual distrust shapes pain communication, further complicating clinical assessments. Moreover, SCD pain is particularly severe, making ratings hard to interpret compared with ratings from non-SCD patients, potentially exacerbating problems in managing pain relief.
MeSH term(s)	Anemia, Sickle Cell/complications ; Communication ; Humans ; Pain/diagnosis ; Pain/etiology ; Pain Management ; Pain Measurement
Language	English
Publishing date	2020-08-01
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2021897-7
ISSN	1461-7277 ; 1359-1053
ISSN (online)	1461-7277
ISSN	1359-1053
DOI	10.1177/1359105320944987
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Article ; Online: Strong structuration analysis of patterns of adherence to hypertension medication.

Seguin, Maureen / Mendoza, Jhaki / Lasco, Gideon / Palileo-Villanueva, Lia M / Palafox, Benjamin / Renedo, Alicia / McKee, Martin / Balabanova, Dina

SSM. Qualitative research in health

2023 Volume 2, Page(s) None

Abstract: Achieving blood pressure control is among the highest priorities for reducing the burden of cardiovascular diseases globally. Control is poor in the Philippines, especially in socioeconomically marginalised communities. This paper explores long-term ... ...

Abstract	Achieving blood pressure control is among the highest priorities for reducing the burden of cardiovascular diseases globally. Control is poor in the Philippines, especially in socioeconomically marginalised communities. This paper explores long-term adherence to anti-hypertensive medication in these communities, identifying 4 distinct medication adherence patterns. We draw on Strong Structuration Theory to explore motivations of action for those who are consistently adherent, consistently non-adherent, and those who became more or less adherent over time. We employ longitudinal qualitative methods comprising repeat interviews and digital diaries collected over 12 months by 34 participants. Twelve participants were consistently adherent, 9 consistently non-adherent, 9 increasingly adherent, and 4 increasingly non-adherent. For the consistently adherent, positive views about prescribed medication and family support encouraged adherence. Conversely, negative views of medication and lack of family support were notable amongst the consistently non-adherent, along with resistance to accepting a 'sick' label. A shift toward positive views of medication was detected amongst those whose adherence improved, along with worsening health and increased family support. A decrease in financial resources drove some participants to become less adherent, especially if they already held negative views toward medication. This study sheds light on the variety of medication adherence patterns among poor people with hypertension in the Philippines, as well as the complex web of elements influencing their treatment choices. The results point to the potential for measures that address concerns about medicines and increase family support.
Language	English
Publishing date	2023-02-08
Publishing country	England
Document type	Journal Article
ISSN	2667-3215
ISSN (online)	2667-3215
DOI	10.1016/j.ssmqr.2022.100104
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Community-led responses to COVID-19 within Gypsy and Traveller communities in England: A participatory qualitative research study.

Renedo, Alicia / Stuart, Rachel / Kühlbrandt, Charlotte / Grenfell, Pippa / McGowan, Catherine R / Miles, Sam / Farrow, Serena / Marston, Cicely

SSM. Qualitative research in health

2023 Volume 3, Page(s) 100280

Abstract: Individuals were asked to play an active role in infection control in the COVID-19 pandemic. Yet while government messages emphasised taking responsibility for the public good (e.g. to protect the National Health Service), they appeared to overlook ... ...

Abstract	Individuals were asked to play an active role in infection control in the COVID-19 pandemic. Yet while government messages emphasised taking responsibility for the public good (e.g. to protect the National Health Service), they appeared to overlook social, economic and political factors affecting the ways that people were able to respond. We co-produced participatory qualitative research with members of Gypsy and Traveller communities in England between October 2021 and February 2022 to explore how they had responded to COVID-19, its containment (test, trace, isolate) and the contextual factors affecting COVID-19 risks and responses within the communities. Gypsies and Travellers reported experiencing poor treatment from health services, police harassment, surveillance, and constrained living conditions. For these communities, claiming the right to health in an emergency required them to rely on community networks and resources. They organised collective actions to contain COVID-19 in the face of this ongoing marginalisation, such as using free government COVID-19 tests to support self-designed protective measures including community-facilitated testing and community-led contact tracing. This helped keep families and others safe while minimising engagement with formal institutions. In future emergencies, communities must be given better material, political and technical support to help them to design and implement effective community-led solutions, particularly where government institutions are untrusted or untrustworthy.
Language	English
Publishing date	2023-04-25
Publishing country	England
Document type	Journal Article
ISSN	2667-3215
ISSN (online)	2667-3215
DOI	10.1016/j.ssmqr.2023.100280
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Health risks at work mean risks at home: Spatial aspects of COVID-19 among migrant workers in precarious jobs in England.

Miles, Sam / Renedo, Alicia / Kühlbrandt, Charlotte / McGowan, Catherine / Stuart, Rachel / Grenfell, Pippa / Marston, Cicely

Sociology of health & illness

2023 Volume 46, Issue 3, Page(s) 381–398

Abstract: During COVID-19 lockdowns in England, 'key workers' including factory workers, carers and cleaners had to continue to travel to workplaces. Those in key worker jobs were often from more marginalised communities, including migrant workers in precarious ... ...

Abstract	During COVID-19 lockdowns in England, 'key workers' including factory workers, carers and cleaners had to continue to travel to workplaces. Those in key worker jobs were often from more marginalised communities, including migrant workers in precarious employment. Recognising space as materially and socially produced, this qualitative study explores migrant workers' experiences of navigating COVID-19 risks at work and its impacts on their home spaces. Migrant workers in precarious employment often described workplace COVID-19 protection measures as inadequate. They experienced work space COVID-19 risks as extending far beyond physical work boundaries. They developed their own protection measures to try to avoid infection and to keep the virus away from family members. Their protection measures included disinfecting uniforms, restricting leisure activities and physically separating themselves from their families. Inadequate workplace COVID-19 protection measures limited workers' ability to reduce risks. In future outbreaks, support for workers in precarious jobs should include free testing, paid sick leave and accommodation to allow for self-isolation to help reduce risks to workers' families. Work environments should not be viewed as discrete risk spaces when planning response measures; responses and risk reduction approaches must also take into account impacts on workers' lives beyond the workplace.
MeSH term(s)	Humans ; COVID-19 ; Transients and Migrants ; Communicable Disease Control ; Workplace ; Employment
Language	English
Publishing date	2023-09-20
Publishing country	England
Document type	Journal Article
ZDB-ID	795552-2
ISSN	1467-9566 ; 0141-9889
ISSN (online)	1467-9566
ISSN	0141-9889
DOI	10.1111/1467-9566.13711
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Zs.A 2727: Show issues

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Jg. 1995 - 2021: Lesesall (2.OG)
ab Jg. 2022: Lesesaal (EG)

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Article ; Online: COVID-19 vaccination decisions among Gypsy, Roma, and Traveller communities: A qualitative study moving beyond "vaccine hesitancy".

Kühlbrandt, Charlotte / McGowan, Catherine R / Stuart, Rachel / Grenfell, Pippa / Miles, Sam / Renedo, Alicia / Marston, Cicely

Vaccine

2023 Volume 41, Issue 26, Page(s) 3891–3897

Abstract: Background: Many people refuse vaccination and it is important to understand why. Here we explore the experiences of individuals from Gypsy, Roma, and Traveller groups in England to understand how and why they decided to take up or to avoid COVID-19 ... ...

Abstract	Background: Many people refuse vaccination and it is important to understand why. Here we explore the experiences of individuals from Gypsy, Roma, and Traveller groups in England to understand how and why they decided to take up or to avoid COVID-19 vaccinations. Methods: We used a participatory, qualitative design, including wide consultations, in-depth interviews with 45 individuals from Gypsy, Roma, and Traveller, communities (32 female, 13 male), dialogue sessions, and observations, in five locations across England between October 2021 and February 2022. Findings: Vaccination decisions overall were affected by distrust of health services and government, which stemmed from prior discrimination and barriers to healthcare which persisted or worsened during the pandemic. We found the situation was not adequately characterised by the standard concept of "vaccine hesitancy". Most participants had received at least one COVID-19 vaccine dose, usually motivated by concerns for their own and others' health. However, many participants felt coerced into vaccination by medical professionals, employers, and government messaging. Some worried about vaccine safety, for example possible impacts on fertility. Their concerns were inadequately addressed or even dismissed by healthcare staff. Interpretation: A standard "vaccine hesitancy" model is of limited use in understanding vaccine uptake in these populations, where authorities and health services have been experienced as untrustworthy in the past (with little improvement during the pandemic). Providing more information may improve vaccine uptake somewhat; however, improved trustworthiness of health services for GRT communities is essential to increase vaccine coverage. Funding: This paper reports on independent research commissioned and funded by the National Institute for Health Research (NIHR) Policy Research Programme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care or its arm's length bodies, and other Government Departments.
MeSH term(s)	Humans ; Male ; Female ; Roma ; COVID-19 Vaccines ; COVID-19 ; Vaccination ; Vaccines
Chemical Substances	COVID-19 Vaccines ; Vaccines
Language	English
Publishing date	2023-05-01
Publishing country	Netherlands
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	605674-x
ISSN	1873-2518 ; 0264-410X
ISSN (online)	1873-2518
ISSN	0264-410X
DOI	10.1016/j.vaccine.2023.04.080
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Zs.A 1930: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular Jg. 1995 - 2021: Lesesall (1.OG) ab Jg. 2022: Lesesaal (EG)
Zs.MO 458: Show issues

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Article: Community participation is crucial in a pandemic

Marston, Cicely / Renedo, Alicia / Miles, Sam

Lancet

Keywords	covid19
Publisher	WHO
Document type	Article
Note	WHO #Covidence: #165230
Database	COVID19

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Article ; Online: Transitions to adulthood: self-governance and disciplining in the making of patient citizens.

Renedo, Alicia / Miles, Sam / Marston, Cicely

Sociology of health & illness

2019 Volume 42, Issue 3, Page(s) 481–495

Abstract: Young people develop new behaviours and redefine their identities during health transitions when they move from paediatric to adult healthcare environments. Their identities help to guide their health-related actions in response to life changes. Young ... ...

Abstract	Young people develop new behaviours and redefine their identities during health transitions when they move from paediatric to adult healthcare environments. Their identities help to guide their health-related actions in response to life changes. Young people's health is increasingly recognised as important, yet we lack understanding of how health transitions shape identities and how they relate to other transitions to adulthood. We conducted a longitudinal interview study with young people with sickle cell disease to explore how young people define new identities as they transition to adulthood. We show how 'disciplining at a distance' via healthcare self-management discourses and neoliberal norms governing adolescence play out in the tensions participants encounter when they are crafting new identities. Health transitions involve struggles to negotiate competing demands for self-discipline. It is crucial to create enabling spaces for young people to protect their health while still developing identities that help them achieve life goals.
MeSH term(s)	Adolescent ; Adult ; Child ; Female ; Goals ; Humans ; Longitudinal Studies ; Male ; Patient Participation ; Peer Group ; Transition to Adult Care ; Young Adult
Language	English
Publishing date	2019-10-30
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	795552-2
ISSN	1467-9566 ; 0141-9889
ISSN (online)	1467-9566
ISSN	0141-9889
DOI	10.1111/1467-9566.13019
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ab Jg. 2022: Lesesaal (EG)

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Article ; Online: Working together to co-produce better health: The experience of the Collaboration for Leadership in Applied Health Research and Care for Northwest London.

Marston, Cicely A / Matthews, Rachel / Renedo, Alicia / Reed, Julie E

Journal of health services research & policy

2020 Volume 26, Issue 1, Page(s) 28–36

Abstract: Objectives: To improve the provision of health care, academics can be asked to collaborate with clinicians, and clinicians with patients. Generating good evidence on health care practice depends on these collaborations working well. Yet such ... ...

Abstract	Objectives: To improve the provision of health care, academics can be asked to collaborate with clinicians, and clinicians with patients. Generating good evidence on health care practice depends on these collaborations working well. Yet such relationships are not the norm. We examine how social science research and health care improvement practice were linked through a programme designed to broker collaborations between clinicians, academics, and patients to improve health care - the UK National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London. We discuss the successes and challenges of the collaboration and make suggestions on how to develop synergistic relationships that facilitate co-production of social science knowledge and its translation into practice. Methods: A qualitative approach was used, including ethnographic elements and critical, reflexive dialogue between members of the two collaborating teams. Results: Key challenges and remedies were connected with the risks associated with new ways of working. These risks included differing ideas between collaborators about the purpose, value, and expectations of research, and institutional opposition. Dialogue between collaborators did not mean absence of tensions or clashes. Risk-taking was unpopular - institutions, funders, and partners did not always support it, despite simultaneously demanding 'innovation' in producing research that influenced practice. Conclusions: Our path was made smoother because we had funding to support the creation of a 'potential space' to experiment with different ways of working. Other factors that can enhance collaboration include a shared commitment to dialogical practice, a recognition of the legitimacy of different partners' knowledge, a long timeframe to identify and resolve problems, the maintenance of an enabling environment for collaboration, a willingness to work iteratively and reflexively, and a shared end goal.
MeSH term(s)	Anthropology, Cultural ; Delivery of Health Care ; Humans ; Leadership ; London
Language	English
Publishing date	2020-06-02
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1330668-6
ISSN	1758-1060 ; 1355-8196
ISSN (online)	1758-1060
ISSN	1355-8196
DOI	10.1177/1355819620928368
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