Background The UN General Assembly (UNGA) stated that the right-to-water entitles everyone to accessible and affordable water. People living with cancer (PLWC) need water for numerous reasons including hydration, personal hygiene and infection control. In 2023, reports emerged of PLWC in Lincolnshire (UK) disconnecting their water supply from cost fears. We report on innovative ways to ease financial burden and provide equitable and affordable access to clean water for PLWC in rural and coastal settings. Methods Quantitative data from secondary care and qualitative data from community-practitioners investigating PLWC’s difficulties in accessing a clean and safe water supply were synthesised. A review of existing financial support identified no services directly addressing water. The Lincolnshire Living with Cancer Team approached water provider, Anglian Water sharing concerns, identifying common values, and confirming shared aims. A formal partnership was established to address these inequalities. Results Initial data reviews showed completion of 25,858 Extra Care Assessments between Jan-Sept 2023 (12 % increase on previous year). This has enabled over 30,000 people with long-term conditions, including PLWC, to access clean and affordable water, a personalised support package for their water bill, including income maximisation, debt management, payment breaks, and bill reductions. Conclusion Impacts of cancer extend beyond physical health, with many PLWC reporting financial distress. Some PLWC have taken extreme measures to reduce their water consumption when they actually need increased water volumes. A partnership approach between health, voluntary and community sectors with a water provider can help address these inequalities. Policy summary The study addresses national policy (NHS Long Term Plan 2019) by demonstrating how personalisation can be achieved for PLWC in a rural and coastal county. Internationally, it aligns to The European Code of Cancer Practice and seeks to contribute to its implementation UNGA Resolution 64/292, the universal human right to water and sanitation.
The National Optimal Lung Cancer Pathway (NOLCP) was introduced by the NHS to improve timelier diagnosis and staging, enabling patients to progress rapidly to optimal treatment. While care pathways can be streamlined, contextual factors may compromise patient engagement with their care. Northeast London is ethnically diverse and highly deprived; two factors associated with difficulty navigating care systems and increased cancer mortality. This study aims to explore how patient and carer characteristics, and factors related to their location, interact to influence patients' capability, opportunity, and motivation to engage with the NOLCP and improve patient outcomes.
Background Neonatal inter-hospital transport is associated with heightened stress for parents whose needs may remain unmet around this time.Aim To identify interventions which are used to support parents whose infants require neonatal inter-hospital transport.Study Design A systematic literature review approach was used. Six online databases (CINAHL, EMBASE, EMCARE, Medline, PsycINFO, Web of Science) were searched up to February 2022. The eligibility criteria included interventional studies published in the English language. Methodological quality was assessed by the Critical Appraisal Skills Programme checklists. Data were extracted using a predefined framework and synthesized narratively because of heterogeneity of reported outcomes.Results A total of 671 articles were screened, with five meeting the eligibility criteria. Three interventions were reported within the five studies: a communication-based intervention before transport represented by 223 parents in one study, Kangaroo Care during transport, which was carried out with 136 infants in three studies, and video calls after transport evaluated by one study in seven parents versus a control group. The effectiveness of the interventions could not be reliably determined. Neonatal nurses were the main providers of all the interventions pre-, peri-, and post-transport.Conclusion Limited evidence of mixed quality and inconsistent outcome measurements is available. Future research should focus on developing a contemporary intervention, determining the optimum timing for its implementation, and evaluating it using a robust study design.Relevance to Clinical Practice Neonatal nurses need to be aware of the importance of their role in supporting parents through the distressing time of neonatal transport.
Purpose To synthesize the qualitative literature exploring the experiences of people living with lung cancer in rural areas. Methods Searches were performed in MEDLINE, CINAHL, and PsycINFO. Articles were screened independently by two reviewers against pre-determined eligibility criteria. Data were synthesized using Thomas and Harden’s framework for the thematic synthesis of qualitative research. The CASP qualitative checklist was used for quality assessment and the review was reported in accordance with the ENTREQ and PRISMA checklists. Results Nine articles were included, from which five themes were identified: (1) diagnosis and treatment pathways, (2) travel and financial burden, (3) communication and information, (4) experiences of interacting with healthcare professionals, (5) symptoms and health-seeking behaviors. Lung cancer diagnosis was unexpected for some with several reporting treatment delays and long wait times regarding diagnosis and treatment. Accessing treatment was perceived as challenging and time-consuming due to distance and financial stress. Inadequate communication of information from healthcare professionals was a common concern expressed by rural people living with lung cancer who also conveyed dissatisfaction with their healthcare professionals. Some were reluctant to seek help due to geographical distance and sociocultural factors whilst others found it challenging to identify symptoms due to comorbidities. Conclusions This review provides a deeper understanding of the challenges faced by people with lung cancer in rural settings, through which future researchers can begin to develop tailored support to address the existing disparities that affect this population.
People with lung cancer, and those who support them, require clear and consistent communication from their healthcare providers to support their engagement in diagnostic and treatment pathways. No systematic review exists that reports on people's qualitative experiences surrounding the communication of a lung cancer diagnosis and subsequent treatment options. This review aimed to identify and synthesise qualitative evidence surrounding patients', carers', and healthcare professionals' experiences of communicating a lung cancer diagnosis and treatment.
Purpose Urban cancer survivors have been shown to have better opportunities for recovery of health and wellbeing than their rural counterparts. Whilst there is a considerable body of evidence that explores urban people with cancers’ experiences and outcomes, there is a dearth of research that explicitly explores ‘urban cancer survivorship’ in its own right. This study aimed to explore cancer survivorship in urban people living with cancer who have completed primary treatment. Methods Secondary analysis of in-depth interview data ( n = 18) with adults living with cancer who resided in urban parts of the UK. Data were drawn from a broader study on self-management of people living with cancer. An adapted version of Foster and Fenlon’s recovery of health and wellbeing in cancer survivorship framework was used to inform the analysis of the data. Results Recovery of health and wellbeing was impacted by a variety of contributory factors, which had a largely positive impact. Access to amenities, social support, travel, and healthcare factors were opportunities for urban cancer survivors, whilst pollution, traffic and a lack of green spaces acted as challenges for health management. Conclusion This study demonstrated how urban residency acted as both a barrier and a facilitator to recovery of health and wellbeing in urban cancer survivors following the completion of primary treatment. Area of residence should be taken into account by health providers and policymakers supporting cancer survivorship and the views of those with lived experiences should be included in informing future practice.
Existing evidence often indicates higher cancer incidence and mortality rates, later diagnosis, lower screening uptake and poorer long-term survival for people living in rural compared to more urbanised areas. Despite wide inequities and variation in cancer care and outcomes across Europe, much of the scientific literature explicitly exploring the impact of rurality on cancer continues to come from Australia and North America. The European Code of Cancer Practice or “The Code” is a citizen and patient-centred statement of the most salient requirements for good clinical cancer practice and has been extensively co-produced by cancer patients, cancer professionals and patient advocates. It contains 10 key overarching Rights that a cancer patient should expect from their healthcare system, regardless of where they live and has been strongly endorsed by professional and patient cancer organisations as well as the European Commission. In this article, we use these 10 fundamental Rights as a framework to argue that (i) the issues and needs identified in The Code are generally more profound for rural people with cancer; (ii) addressing these issues is also more challenging in rural contexts; (iii) interventions and support must explicitly account for the unique needs of rural residents living with and affected by cancer and (iv) new innovative approaches are urgently required to successfully overcome the challenges faced by rural people with cancer and their caregivers. Despite equitable healthcare being a key European policy focus, the needs of rural people living with cancer have largely been neglected.
Abstract Background Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person’s location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients’ and informal carers’ participation in and experience of the lung cancer care pathway. Methods A qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals’ capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement. Discussion The study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway. Protocol registration The study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48 ).
There are wide variations and inequalities in lung cancer care across the UK, but most research has focused on improving the quality of clinical services and less on individual-related factors. There is evidence to suggest that rural people with lung cancer may experience unique inequalities in care compared to their urban counterparts. Lincolnshire has some of the most deprived parts of the UK, particularly in rural and coastal areas, where people face considerable barriers to engaging with, and accessing cancer care. This study explores how rural patient and carer characteristics, and factors related to their location, interact to influence patients' capability, opportunity, and motivation to engage with their recommended treatment pathway.
Individuals with type 2 diabetes mellitus (T2DM) are at an increased risk of cognitive dysfunction. Growing evidence supports the use of cognitive training to target cognitive dysfunction in T2DM, but only limited evidence exists surrounding its feasibility and acceptability. The primary aim of this research is to determine the feasibility and acceptability of a cognitive training study in T2DM. Adults diagnosed with T2DM were randomly allocated to either a 6-week cognitive training group or a usual care control group. Feasibility outcomes (recruitment, adherence, retention, motivation, data collection, and intervention design) were evaluated using a traffic light progression criterion. Qualitative interviews were conducted to explore study acceptability. Cognition was measured at baseline and post-intervention. Forty-one participants completed the study (age 66 ± 9.8 years; HbA1c 54.0 ± 13.3 mmol.mol). Feasibility was shown in the adherence, retention, and motivation of participants, whilst minor amendments were proposed to the study design, recruitment, and data collection. Participants described cognitive training as highly enjoyable, with study components broadly reported as acceptable. Data signalled improvements in cognition, with large improvements observed in executive function. This study provides evidence for the potential feasibility, acceptability, and efficacy for cognitive training in T2DM. Recommendations for future studies are provided.
INTRODUCTION:With projected increases in cancer prevalence, and demonstrated unmet need, there is an urgency for a collaborative approach to improving the lives of those living with cancer particularly in rural and coastal areas where cancer survivors face unique challenges. We report on an innovative 'Living with Cancer' (LWC) programme in the rural and coastal English county of Lincolnshire.METHODS:In 2016, the Lincolnshire LWC programme was established to develop person-centred, local support for people living with cancer, their carers and significant others in Lincolnshire. This article reports on the setup of the LWC programme, our innovative approach to delivering cancer care in a rural and coastal setting, as well as our most salient achievements.RESULTS:This work, developed within a policy context of tackling health inequalities and personalised approaches to care, started with stakeholder and community engagement where people described the challenges to living well after cancer and the need to focus on 8 themes further exacerbated by rurality. Recognising the limitations of conventional approaches, led to the development of a strategy underpinned by a shared set of principles and a philosophy of the importance of a transformative, whole-system, place-based, asset-based, and person-centred approaches. The strategy is now being coordinated and delivered across all cancer pathways and Lincolnshire communities. In 2022, permanent funding was secured, and our success was also demonstrated by a national Macmillan Integration Excellence award.DISCUSSION:The initial success of the LWC programme in Lincolnshire is a result of an explicit focus on 'transformation' rather than 'improvement', and a programme not solely situated in an acute setting, which needed a whole systems approach with a focus on person-centred support and community engagement.
Purpose of review There is a paucity of knowledge regarding patient adherence to dysphagia recommendations. It is recognized that unique barriers and facilitators contribute to poor treatment adherence in head and neck cancer (HNC) survivors. This review aims to identify the key themes and knowledge gaps regarding adherence to swallowing recommendations in HNC survivors during (chemo)radiotherapy (C)RT. Recent findings Seven studies were identified. Six facilitators to adherence were extracted, namely pain relief, behavioural intervention, attendance at multidisciplinary clinic, individualised swallowing therapy, absence of prophylactic percutaneous endoscopic gastronomy (PEG) and positive social control from a spouse. Barriers to adherence included pain, depression and presence of prophylactic PEG. Adherence to swallowing recommendations positively impacted swallowing outcomes in one study. Summary Little is known about adherence to swallowing recommendations during (C)RT in HNC survivors. Capturing adherence is challenging. Several knowledge gaps were identified. Further research is needed to better understand the barriers and facilitators from the survivors’ perspective. This will inform development of best practice regarding how swallowing recommendations are provided to promote adherence and improve outcomes.
PurposeThe aim of this review was to synthesise qualitative literature on physical activity experiences of community-dwelling older adults with physical disabilities.MethodsWe conducted a scoping review of peer-reviewed, qualitative studies on physical activity with community-dwelling older adults with physical disabilities. We analysed eligible studies identified through electronic database searches (CINAHL Complete, MEDLINE, SPORTDiscus) and manual searches undertaken up to June 2023.ResultsTwenty-eight articles with 306 participants were included. As regard the experience of physical activity, although physical activity could elicit pleasure and enjoyment, many reported that physical activity sometimes produced pain. Various outcomes of physical activity were reported, with several physical, psychological, social, and lifestyle benefits prominent. Analyses of barriers and facilitators demonstrated how intrapersonal, interpersonal, environmental, and systems and programme factors influenced physical activity participation among older adults with physical disabilities.DiscussionOur findings contribute to literature on physical activity in older adults with physical disabilities by synthesising qualitative research on physical activity experiences, outcomes, barriers, and facilitators in this population. Findings demonstrate the need for knowledgeable and supportive healthcare and exercise professionals, environments that support physical activity, and activities that promote pleasure and social connections.Implications for RehabilitationPhysical activity is perceived to have wide-ranging benefits for community-dwelling older adults with physical disabilities.Various intrapersonal, interpersonal, environmental, and systems and programme barriers constrain physical activity in physically disabled people.Knowledgeable and supportive healthcare and exercise professionals, accessible environments, and activities that promote pleasure and social connections could enhance engagement in physical activity.
Objective To systematically identify and explore the existing evidence to inform the development of web-based interventions to support people affected by cancer (PABC). Design A rapid review design was employed in accordance with the guidance produced by the Cochrane Rapid Reviews Methods Group and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist. A rapid review was chosen due to the need for a timely evidence synthesis to underpin the subsequent development of a digital resource (Shared Lives: Cancer) as part of an ongoing funded project. Methods and outcomes Keyword searches were performed in MEDLINE to identify peer-reviewed literature that reported primary data on the development of web-based interventions designed to support PABC. The review included peer-reviewed studies published in English with no limits set on publication date or geography. Key outcomes included any primary data that reported on the design, usability, feasibility, acceptability, functionality and user experience of web-based resource development. Results Ten studies were identified that met the pre-specified eligibility criteria. All studies employed an iterative, co-design approach underpinned by either quantitative, qualitative or mixed methods. The findings were grouped into the following overarching themes: (1) exploring current evidence, guidelines and theory, (2) identifying user needs and preferences and (3) evaluating the usability, feasibility and acceptability of resources. Resources should be informed by the experiences of a wide range of end-users taking into consideration current guidelines and theory early in the design process. Resource design and content should be developed around the user’s needs and preferences and evaluated through usability, feasibility or acceptability testing using quantitative, qualitative or mixed methods. Conclusion The findings of this rapid review provide novel methodological insights into the approaches used to design web-based interventions to support PABC. Our findings have the potential to inform and guide researchers when considering the development of future digital health resources. Trial registration number The review protocol was registered on the Open Science Framework (https://osf.io/ucvsz).
The COVID-19 pandemic has caused considerable disruption to cancer care and may have exacerbated existing challenges already faced by cancer survivors from rural areas. This has created a need for a rapid evidence synthesis to inform the development of tailored interventions that address the specific needs of rural cancer survivors who continue to be affected by the pandemic. The review was conducted following guidance from the Cochrane Rapid Review Methods Group. Database searches were performed via the EBSCOHost interface (includes MEDLINE, CINAHL, PsycINFO) on 25 May 2022 and supplemented with searches on Google Scholar. Peer-reviewed articles published after March 2020 that reported primary data on the experiences of cancer survivors residing in rural and remote settings during the pandemic were included. Findings were tabulated and written up narratively. Fourteen studies were included. The COVID-19 pandemic had a mostly detrimental impact on the experiences of rural cancer survivors. People’s individual coping mechanisms were challenging for a range of reasons. Specifically, the pandemic impacted on their ability to access testing, treatment, check-ups and supportive care, their ability to maintain and access social support with close friends and family, as well as negative consequences to their finances and emotional wellbeing with some reporting feelings of psychological distress including depression and anxiety. This review provides important insight into the experiences of rural cancer survivors that may help inform tailored support in line with the needs and challenges faced because of the pandemic.
Introduction: More people are living with and beyond cancer and digital interventions are increasingly being used to support them at all stages through their journey. This rapid review aims to systematically identify and explore the existing evidence that reports on primary data concerning the development of web-based interventions used to support people living with and affected by cancer. Methods and analysis: Keyword searches were performed in MEDLINE to identify peer-reviewed literature on web-based interventions that are designed to support people living with and affected by cancer. The review will include studies published in the English language and will not have any restrictions on publication date or geography. Screening and data extraction will be completed independently by two reviewers. The included studies will be tabulated and the results synthesised narratively. Discussion: This rapid review aims to identify and synthesise the peer-reviewed academic literature that reports on primary data concerning the development of web-based interventions to support people living with and affected by cancer. This methodology was chosen to rapidly synthesise the existing peer-reviewed evidence to support the development and design of an online web-based platform that the team are working on to make qualitative research data on lived cancer experience publicly available and accessible. Ethics and dissemination: The review was registered and given a favourable ethical opinion on the 19/07/21 by a committee at the University of Lincoln (Review ref: 2021_6976). The findings from this rapid review will be presented at appropriate conferences and published in a peer reviewed academic journal as well as a report for the National Institute for Health Research Clinical Research Network. Systematic review registration: The protocol was registered on the Open Science Framework [https://osf.io/ucvsz].
INTRODUCTION:Previous evidence has shown significant effects of exercise, cognitive and dual-task training for improving cognition in healthy cohorts. The effects of these types of interventions in type 2 diabetes mellitus is unclear. The aim of this research was to systematically review evidence, and estimate the effect, of exercise, cognitive, and dual-task interventions on cognition in type 2 diabetes mellitus. METHOD:Electronic databases including PubMed, EMBASE, CINAHL, PsycINFO, SPORTDiscus, and MEDLINE were searched for ongoing and completed interventional trials investigating the effect of either an exercise, cognitive or dual-task intervention on cognition in type 2 diabetes mellitus. RESULTS:Nine trials met the inclusion criteria-one dual-task, two cognitive, and six exercise. Meta-analyses of exercise trials showed no significant effects of exercise on measures of executive function (Stroop task, SMD = -0.31, 95% CI -0.71-0.09, P = 0.13, trail making test part A SMD = 0.28, 95% CI -0.20-0.77 P = 0.25, trail making test part B SMD = -0.15, 95% CI -0.64-0.34 P = 0.54, digit symbol SMD = 0.09, 95% CI -0.39-0.57 P = 0.72), and memory (immediate memory SMD = 0.20, 95% CI -0.28-0.69, P = 0.41 and delayed memory SMD = -0.06, 95% CI -0.55-0.42, P = 0.80). A meta-analysis could not be conducted using cognitive or dual-task data, but individual trials did report a favourable effect of interventions on cognition. Risk of bias was considered moderate to high for the majority of included trials. CONCLUSIONS:Meta-analyses of exercise trials identified a small effect size (0.31), which whilst not significant warrants further investigation. Larger and more robust trials are needed that report evidence using appropriate reporting guidelines (e.g. CONSORT) to increase confidence in the validity of results. TRIAL REGISTRATION:Protocol was registered (CRD42017058526) on the International Prospective Register of Systematic Reviews (http://www.crd.york.ac.uk/PROSPERO).