Papers by Professor Carol Rivas
Forum Qualitative Social Research, 2019
In this report we present a reflection on the Collaborative Poetics Network's first "Car... more In this report we present a reflection on the Collaborative Poetics Network's first "Carnival of Invention" which was held on 15 th June 2018 at the University of Brighton, England. Collaborative poetics is an arts-based research method that brings together expertise from artists, academics, and community participants, to share knowledge and promote social change through engaging and accessible ways. On the day of the Carnival over 40 contributors from around the world came to participate in a series of workshops, presentations, installations and displays. In this article we outline the themes addressed on the day and the media utilized in these interactive and experiential sessions. We argue that this event supported the benefits of arts-based research in developing, analyzing, and communicating rich data sets. Finally, we provide evaluation and reflections from the event (including in haiku , a traditional Japanese form of poetry), in an attempt to creatively capture...
Background/Purpose: A minority of men with prostate cancer (PCa) report significant psychological... more Background/Purpose: A minority of men with prostate cancer (PCa) report significant psychological distress several years post-diagnosis. Greater understanding of the contributing factors that impact on psychological distress is required to understand how such men could be better supported. Methods: Men with prostate cancer diagnosed with PCa 18-42 months previously were recruited through a UK wide survey that included measures of psychological distress (K6, SWEMWBS). Indepth telephone interviews with 179 men were conducted. A sub-sample (n=26) were selected who scored above the 'caseness' cutoff on one or more psychological well-being measures. Framework analysis was used.
Journal of the Royal Society of Medicine
Analysis of National Health Service prescription data for the antidepressants from 1980 to 1989 s... more Analysis of National Health Service prescription data for the antidepressants from 1980 to 1989 shows a consistent secular trend towards the increased use of generic names on prescriptions for this group of drugs. This apparently reflects national trends for all drugs, and was similar for most antidepressants. However, generic prescribing had by 1989 increased significantly more rapidly with fluvoxamine, which was introduced in 1987. The two drugs introduced in 1989, fluoxetine and amoxapine, also had a high generic prescribing rate in their year of introduction. Incrased generic prescribing may become a feature with further new drugs. However, the use of the generic name on the prescription has relatively little influence on what is dispensed to the patient. Pharmacists may dispense a brand name when given a generic prescription. Moreover, pressures on doctors to write generic names on prescriptions may have limited relevance for some drugs; generic alternatives were available for ...
BACKGROUND The COVID-19 pandemic has inequitably impacted the experiences of people living with i... more BACKGROUND The COVID-19 pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritized ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritized ethnic backgrounds, their existence before the pandemic and increase since, and the discriminations that each group faces, our interest is in understanding the interplay between being disabled AND being from a minoritized ethnic group. OBJECTIVE The overarching aim of the Coronavirus Chronic Conditions and Disabilities Awareness (CICADA) project, building on this understanding, is to improve pandemic and longer-term support networks, and access to and experiences of care, services, and resources for these underserved groups, both during the pandemic and longer term, thereby reducing inequities and enhancing social, health, and well-being outcomes. METHODS This mixed methods study involves three “sweeps” of a new UK survey...
COREQ checklist â Completed checklist for this manuscript. (PDF 491 kb)
AJOG Global Reports, 2021
This is a PDF file of an article that has undergone enhancements after acceptance, such as the ad... more This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
BMJ Open Diabetes Research & Care, 2020
IntroductionPoor access to, and engagement with, diabetes healthcare is a significant issue for b... more IntroductionPoor access to, and engagement with, diabetes healthcare is a significant issue for black British communities who are disproportionately burdened by type 2 diabetes (T2D). Tackling these inequalities is a healthcare priority. The purpose of this research was to explore the experiences of healthcare practitioners providing diabetes self-management education and support (DSMES) to African and Caribbean adults living with T2D to inform the development of a culturally tailored DSMES program.Research design and methodsSemi-structured interviews were carried out with a range of healthcare practitioners including diabetes specialist nurses, dietitians and general practitioners based in primary care in inner London. Thematic content analysis was used to identify barriers and facilitators relating to the provision of effective DSMES.ResultsTen interviews were conducted. There was a strong consensus among healthcare practitioners for the importance of DSMES in T2D healthcare. Howe...
Supportive Care in Cancer, 2020
Due to recent treatment advances, men are increasingly living longer with advanced prostate cance... more Due to recent treatment advances, men are increasingly living longer with advanced prostate cancer (PCa). This study sought to understand men's experiences of living with and adjusting to advanced hormone responsive PCa, and how this influenced their quality of life (QoL), in order to highlight how support could be optimised. Methods: Participants were recruited through a UK wide survey-the 'Life After Prostate Cancer Diagnosis' study. In-depth telephone interviews were conducted with 24 men (aged 46-77 years) with advanced (stage IV) hormone responsive PCa diagnosed 18-42 months previously. Thematic analysis was undertaken using a framework approach. Results: Most participants perceived their QoL to be relatively good, which was influenced by the following factors (enablers to 'living well' with PCa): a sense of connectedness to others, engagement in meaningful activities, resources (social, cognitive, financial), ability to manage uncertainty, utilisation of adjustment strategies and support, communication and information from health professionals. Barriers to 'living well' with PCa were often the converse of these factors. These also included: more troublesome PCa-related symptoms, and stronger perceptions of loss and restriction. Conclusions: In our study, men living with advanced hormone responsive PCa often reported a good QoL. Exploring the influences on QoL in men with advanced PCa indicates how future interventions might improve the QoL of men who are struggling. Further research is required to develop and test interventions that enhance QoL for these men. men with advanced PCa living longer and in a hormone-sensitive phase, this is a significant information gap [4]. The Life After Prostate Cancer Diagnosis (LAPCD) study [22], a UK population-based study aimed to explore the impact of PCa on men's well-being through a survey and interviews. Given the dearth of studies on men living with advanced PCa, we aimed to explore the experiences of all interviewees living with stage IV hormone responsive PCa, drawn from the total sample of interviewed men. We also aimed to explore the influences on their perceived QoL and to highlight how support services could be optimised, as few interventions have addressed the needs of this growing population of men. Methods
BMJ Open, 2020
ObjectivesTo evaluate the feasibility of a randomised trial of a modified, pre-existing, mindfuln... more ObjectivesTo evaluate the feasibility of a randomised trial of a modified, pre-existing, mindfulness meditation smartphone app for women with chronic pelvic pain.DesignThree arm randomised feasibility trial.SettingWomen were recruited at two gynaecology clinics in the UK. Interventions were delivered via smartphone or computer at a location of participants choosing.ParticipantsWomen were eligible for the study if they were over 18, had been experiencing organic or non-organic chronic pelvic pain for 6 months or more, and had access to a computer or smartphone. 90 women were randomised.InterventionsDaily mindfulness meditation delivered by smartphone app, an active control app which delivered muscle relaxation techniques, and usual care without app. Interventions were delivered over 60 days.Primary and secondary outcome measuresOutcomes included length of recruitment, follow-up rates, adherence to the app interventions, and clinical outcomes measured at baseline, two, three and 6 mon...
European Journal of Cancer Care, 2019
Objective: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC... more Objective: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC) men in the UK as a response to the impact of PCa diagnosis and treatment effects. Methods: Men were recruited through the UK-wide 'Life After Prostate Cancer Diagnosis' (LAPCD) survey. Telephone interviews were conducted with men (n=14) with BA and BC backgrounds between 18-42 months post-diagnosis. Data were analysed using a Framework approach. Results: Most men (n=12) were born outside the UK, were married (n=9) and employed (n=9). Median age was 66 years (range: 55-85). Six overarching themes emerged: a strong reliance upon faith beliefs; maintaining a 'positive' front; work as distraction; non-disclosure of diagnosis even amongst family members, influenced by stigma and masculinity concerns; active awareness-raising amongst a minority, and; support-seeking from close community. A few men emphasised a need to 'pitch' awareness-raising messages appropriately. Potential links existed between faith beliefs, presenting a positive front, community support-seeking and local awareness-raising. Conclusion: The provision of patient-centred care requires cultural sensitivity. Interventions that challenge stigma and mens' reluctance to disclose problems associated with PCa and treatment may encourage help-seeking for symptom support. Research is needed to determine how best awareness-raising messages should be conveyed to black men.
Health Services and Delivery Research, 2019
BackgroundPatient experience surveys (PESs) often include informative free-text comments, but wit... more BackgroundPatient experience surveys (PESs) often include informative free-text comments, but with no way of systematically, efficiently and usefully analysing and reporting these. The National Cancer Patient Experience Survey (CPES), used to model the approach reported here, generates > 70,000 free-text comments annually.Main aimTo improve the use and usefulness of PES free-text comments in driving health service changes that improve the patient experience.Secondary aims(1) To structure CPES free-text comments using rule-based information retrieval (IR) (‘text engineering’), drawing on health-care domain-specific gazetteers of terms, with in-built transferability to other surveys and conditions; (2) to display the results usefully for health-care professionals, in a digital toolkit dashboard display that drills down to the original free text; (3) to explore the usefulness of interdisciplinary mixed stakeholder co-design and consensus-forming approaches in technology development,...
Cochrane Database of Systematic Reviews, 2018
A realist review of which advocacy interventions work for which abused women under what circumsta... more A realist review of which advocacy interventions work for which abused women under what circumstances: an exemplar.
Psycho-Oncology, 2019
This is a repository copy of The psychological impact of being on a monitoring pathway for locali... more This is a repository copy of The psychological impact of being on a monitoring pathway for localised prostate cancer: a UK-wide mixed methods study.
BMJ Open, 2019
IntroductionBlack British communities are disproportionately burdened by type 2 diabetes (T2D) an... more IntroductionBlack British communities are disproportionately burdened by type 2 diabetes (T2D) and its complications. Tackling these inequalities is a priority for healthcare providers and patients. Culturally tailored diabetes education provides long-term benefits superior to standard care, but to date, such programmes have only been developed in the USA. The current programme of research aims to develop the Healthy Eating and Active Lifestyles for Diabetes (HEAL-D) culturally tailored T2D self-management programme for black British communities and to evaluate its delivery, acceptability and the feasibility of conducting a future effectiveness trial of HEAL-D.Methods and analysisInformed by Medical Research Council Complex Interventions guidance, this research will rigorously develop and evaluate the implementation of the HEAL-D intervention to understand the feasibility of conducting a full-scale effectiveness trial. In phase 1, the intervention will be developed. The intervention...
Diabetic Medicine, 2019
Aim To conduct a mixed-methods feasibility study of the effectiveness and acceptability of an ind... more Aim To conduct a mixed-methods feasibility study of the effectiveness and acceptability of an individualized diet and physical activity intervention designed to reduce the risk of Type 2 diabetes experienced by people living with HIV. Methods Participants with impaired fasting glucose and HIV were invited to take part in a 6-month diet and physical activity intervention. Individualized advice to achieve 10 lifestyle goals was delivered monthly. Diabetes risk was assessed pre-and post-intervention by measurement of the glucose and insulin response to a 3-h meal tolerance test. Sixmonth change was analysed using paired t-tests. Research interviews exploring the acceptability of the intervention and factors influencing behaviour change were conducted with those who participated in the intervention, and those who declined participation. Results The intervention (n=28) significantly reduced the following: glucose and insulin, both fasting and postprandial incremental area under the curve (glucose 7.9% and 17.6%; insulin 22.7% and 31.4%, respectively); weight (4.6%); waist circumference (6.2%); systolic blood pressure (7.4%); and triglycerides (36.7%). Interview data demonstrated the acceptability of the intervention. However, participants expressed concern that deliberate weight loss might lead to disclosure of HIV status or association with AIDS-related illness. The belief that antiretroviral medications drove diabetes risk was associated with declining study participation or achieving fewer goals. Conclusions We have demonstrated the beneficial effects of a lifestyle intervention in mitigating the increased risk of Type 2 diabetes associated with HIV. Future interventions should be designed to further reduce the unique barriers that prevent successful outcomes in this cohort.
BACKGROUND Gaming techniques are increasingly recognized as effective methods for changing behavi... more BACKGROUND Gaming techniques are increasingly recognized as effective methods for changing behavior and increasing user engagement with mobile phone apps. The rapid uptake of mobile phone games provides an unprecedented opportunity to reach large numbers of people and to influence a wide range of health-related behaviors. However, digital interventions are still nascent in the field of health care, and optimum gamified methods of achieving health behavior change are still being investigated. There is currently a lack of worked methodologies that app developers and health care professionals can follow to facilitate theoretically informed design of gamified health apps. OBJECTIVE This study aimed to present a series of steps undertaken during the development of Cigbreak, a gamified smoking cessation health app. METHODS A systematic and iterative approach was adopted by (1) forming an expert multidisciplinary design team, (2) defining the problem and establishing user preferences, (3) ...
BJU international, Jan 28, 2018
To provide intelligence on the prevalence of urinary, bowel and sexual dysfunction in Northern Ir... more To provide intelligence on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI) to act as a baseline for studies of prostate cancer (PCa) outcomes and to aid service provision within the general population. A cross-sectional postal survey of 10,000 men aged 40 and over in NI, age-matched to the distribution of men living with PCa. The EQ-5D-5L and EPIC-26 instruments were used to enable comparisons with PCa outcome studies. While representative of the PCa survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding 40-59 year olds and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-square tests, ANOVA and multivariable log-linear regression. Among men aged 60 plus, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction and 6.5% ...
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Jan 6, 2018
To review and interpret existing qualitative literature on the experiences of couples affected by... more To review and interpret existing qualitative literature on the experiences of couples affected by prostate cancer (PCa). A metasynthesis was carried out which included a systematic search of seven databases between 2000 and 2016. A modified version of Noblit and Hare's meta-ethnographic approach was used to synthesise qualitative study findings and inform overarching interpretations. Thirty-seven studies focusing on the experiences of men with PCa and their partner dyad were included producing seven interconnected constructs. The construct accepting change vs seeking continuity reflects the range of ways individuals within the dyad and couples adjust to the diagnosis. Cultivating connection vs disengaging illustrates how couples seek to manage the impact of PCa and its treatment on their relationship, which may lead to a threatened identity, including sexual insecurities. Shielding me, you and us reflects the ways in which couples strive to protect themselves as individuals and/...
JMIR research protocols, Jan 15, 2018
Female chronic pelvic pain (CPP) is defined as intermittent or constant pelvic or lower abdominal... more Female chronic pelvic pain (CPP) is defined as intermittent or constant pelvic or lower abdominal pain occurring in a woman for at least 6 months. Up to a quarter of women are estimated to be affected by CPP worldwide and it is responsible for one fifth of specialist gynecological referrals in the United Kingdom. Psychological interventions are commonly utilized. As waiting times and funding capacity impede access to face-to-face consultations, supported self-management (SSM) has emerged as a viable alternative. Mindfulness meditation is a potentially valuable SSM tool, and in the era of mobile technology, this can be delivered to the individual user via a smartphone app. To assess the feasibility of conducting a trial of a mindfulness meditation intervention delivered by a mobile phone app for patients with CPP. The main feasibility objectives were to assess patient recruitment and app adherence, to obtain information to be used in the sample size estimate of a future trial, and to...
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Papers by Professor Carol Rivas