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55 result(s) for "Prue, Gillian"
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Psychological aspects of active surveillance
AimThe objective of this paper was to discuss the psychological impact of active surveillance (AS) for prostate cancer (PCa) and the resulting implications of psychological wellbeing for treatment decision making and acceptance of AS protocols.MethodQualitative and quantitative research in the area of anxiety, depression, and distress is discussed drawing from PCa literature as well other health conditions from which parallels can be drawn.ResultsAttention is given to the role of the clinician in treatment decision making, including the value of information provision, and perceived trust in the AS as a management approach.ConclusionGiven that research is conflicted regarding the psychological impact of AS for PCa, it is suggested that focus shifts away from debate of the ‘true’ experience of AS rather researchers and clinicians should seek to identify the factors associated with positive and negative psychological response to diagnosis and AS to improve psychological and physical outcomes. Recommendations for clinical practice are discussed.
Exploring the influence of culture on the physical activity routines of elderly individuals with chronic diseases: a scoping review
Background The global demographic shift towards a population with a more significant proportion of elderly individuals has been associated with notable advancements in medical technology, leading to an increased incidence of chronic illnesses. The importance of healthcare and regular physical activity in preventing illnesses among older adults was emphasised. Consistent participation in exercise has been shown to provide benefits such as decreased vulnerability, lower mortality risk, and improved cognitive abilities. Even with the advantages, there were challenges linked to maintaining a regular exercise routine. The primary objective of this study was to address the current gap in research about the impact of culture on exercise behaviours in the population of older individuals who suffer from chronic diseases. The concept of culture, as published by UNESCO, was used to carry out a comprehensive investigation. Methods The main objective of this study is to investigate the influence of cultural variables on the level of participation in physical exercise among elderly adults with chronic illnesses. The research used the framework proposed by Arksey and O’Malley and will conform to the PRISMA-ScR guidelines for documenting systematic reviews. The study used a rigorous process to identify relevant scientific publications published in either English or Arabic during the last twenty years. The accomplishment was achieved by extensively searching many databases, such as OVID Medline, Embase, CINAHL, and Scopus. The investigation includes the period up to June 2023, supported by a meticulous assessment of reference lists to ensure a complete study of the literature. Results The scoping study identified different cultural factors that have a substantial impact on the physical activity habits of older persons with chronic illnesses. Perspectives towards physical activity are influenced by cultural values and beliefs, including ideas of ageing and health. Traditional techniques, such as Tai Chi, are favoured by elder Chinese Americans due to their cultural alignment and ability to increase involvement. Community-based initiatives that include physical activity into everyday schedules, bolstered by local customs and social connections, substantially enhance engagement and compliance. Familial and social networks played a vital role as important motivators, offering both encouragement and practical assistance. In addition, making environmental changes, such as establishing inclusive and culturally suitable communal areas for physical exercise, plays a crucial part in encouraging physical activity. The results underscore the necessity of implementing culturally sensitive, community-oriented, and environmentally supportive approaches to promote physical activity among older persons who have chronic illnesses. Conclusion This scoping study emphasises the significant influence of cultural influences on the physical activity habits of older persons with chronic illnesses. Efficient interventions should possess cultural sensitivity, be rooted in the community, and receive support from familial and social networks. Customised programmes that integrate local traditions, include community people, and adapt the surroundings to promote physical activity are crucial. Further investigation is warranted to delve into these cultural aspects to devise more efficient and comprehensive health promotion tactics.
Impact of COVID-19 on an established physical activity and behaviour change support programme for cancer survivors: An exploratory survey of the Macmillan Move More service for Northern Ireland
PurposeThe recent coronavirus pandemic (COVID-19) has affected the delivery of routine cancer care and supportive services. The Macmillan Move More Northern Ireland (MMNI) programme provides access to physical activity and behavioural change support before, during and after cancer treatment. This evaluation details the impact of the pandemic on the MMNI participants and identifies methods to adapt service delivery.MethodsA multiple-choice and short answer online survey was sent to 730 MMNI participants, to investigate the impact of the initial, national COVID-19 lockdown. Specifically, the survey examined physical activity patterns, the physical/emotional/social impact of restrictions and attitudes towards digitally supported exercise. Free text responses were analysed thematically with findings verified within the research team.Results377 participants completed the survey (52% response rate). 50% of respondents had breast cancer, with 36 other diagnoses registered (82% were female). Participants reported physical activity levels decreased during restrictions, citing isolation; declining health/fitness; lack of access and motivation. The dataset trended towards women and those diagnosed with breast cancer. 71% reported the pandemic impacted their physical (n=119) and/or psychosocial (n=231) wellbeing. Many respondents were availing of digitally supported exercise, whilst half of males did not engage (46%). Finally, 80% of respondents were interested in using a MMNI smart application.ConclusionThe COVID-19 pandemic has affected participant physical activity levels. Supervised classes were the most popular (pre-pandemic), with enforced leisure centre closures prompting this reduction. The pandemic has negatively affected the psychosocial wellbeing (mental health) of participants, compounded by the restrictions imposed on the traditional delivery of MMNI. This impact is felt equally across cancer types. Participants with breast cancer are the most engaged in using digital technology to access exercise. Although underrepresented, men require greater targeting to ensure equality in access to online services.
A Grounded Theory of the Lived Experiences of People with Pancreatic Cancer in Northern Ireland: Study Protocol
Background/Objectives: Pancreatic cancer remains highly fatal, often diagnosed late with poor prognoses and worse psychological quality of life compared to other cancers. Globally, it is the twelfth most common cancer but the sixth leading cause of cancer-related deaths, with actual 5-year survival rates below 5%. Northern Ireland’s outcomes are among the worst, yet research on people’s experiences across the illness trajectory is scarce. Consequently, the unique needs of people with pancreatic cancer are poorly understood. It is crucial we develop deeper understanding of the entire pancreatic cancer journey to address this. This study aims to explore the lived experiences of people diagnosed with pancreatic cancer in Northern Ireland and generate a theory that explains their journeys, from pre-diagnosis through to survivorship or end of life. Methods: This study will adopt a grounded theory approach, incorporating multiple qualitative data generation methods: semi-structured interviews with patients and care partners, and focus groups with professionals. An optional photovoice (participatory photography) method will be offered to participants. Theoretical sampling principles and constant comparative analysis will guide recruitment, data collection, and analysis to ensure the explanatory theory is rooted in participants’ lived experiences. Conclusions: Establishing a holistic, in-depth understanding of people’s pancreatic cancer journeys will enable us to better comprehend, anticipate, and meet their needs. A theory grounded in empirical data about lived experiences can inform priorities for future care, support services, policy, and research, and contribute to the development of support interventions that help people to maintain the best possible quality of life, whether during a short-term, terminal illness; treatment journey; long-term symptom management; or survivorship.
Digital Serious Games for Cancer Education and Behavioural Change: A Scoping Review of Evidence Across Patients, Professionals, and the Public
Background/Objectives: Gamification and game-based learning (GBL) have recently emerged as fresh and appealing ways of health education, and they have been shown to perform better in knowledge acquisition than traditional teaching approaches. Digital serious games are developing as innovative tools for cancer education and behaviour change, yet no review has systematically synthesized their use across key populations. This scoping review aimed to map evidence on serious games for cancer prevention, care, and survivorship among the public, patients, and healthcare professionals, framed through the Capability, Opportunity, Motivation-Behaviour (COM-B) model. Methods: Following Joanna Briggs Institute methodology, we searched Web of Science, MEDLINE, CINAHL, and PsycINFO. Eligible studies evaluated a serious game with a cancer focus and reported outcomes on knowledge, awareness, engagement, education, or behaviour. Data extraction and synthesis followed the PRISMA-ScR checklist. Results: Thirty-five studies met the inclusion criteria, covering diverse cancers, populations, and platforms. Most reported improvements in knowledge, engagement, self-efficacy, and communication. However, heterogeneity in study design and limited assessment of long-term behaviour change constrained comparability. Conclusions: Digital serious games show promise for enhancing cancer literacy and supporting behavioural outcomes across patients, professionals, and the public. By integrating multiple perspectives, this review highlights opportunities for theory-driven design, robust evaluation, and implementation strategies to maximize their impact in cancer education and awareness.
The psychosocial impact of pancreatic cancer on caregivers: a scoping review
Background Family caregivers are essential members of the care team of someone with pancreatic cancer, supporting their physical and psychological needs. Caregivers are often unprepared for this which may cause substantial psychosocial impact. This may be exacerbated by the short life-expectancy and rapid deterioration associated with pancreatic cancer. A scoping review was conducted to identify, from the existing literature, what is currently known about the psychosocial impact of pancreatic cancer on caregivers across the disease trajectory. Methods A Joanna Briggs Institute (JBI) mixed methods scoping review was conducted across four databases (CINAHL, EMBASE, MEDLINE, PsycINFO). All identified citations were uploaded to Covidence, and were screened independently by two reviewers. Data were extracted and synthesised following a deductive approach guided by ‘The Cancer Family Caregiving Experience’ model (Fletcher et al., 2012). Results 42 studies were included: 22 qualitative, 15 quantitative, 5 mixed methods. Results of the included studies were collated into the proposed constructs of Fletcher et al.’s (2012) model: primary stressors, secondary stressors, appraisal, cognitive-behavioural responses, health and wellbeing outcomes, as well as the influence of disease trajectory and contextual factors. The literature highlighted pancreatic cancer caregivers experienced stress related to caregiving activities, disruptions in their daily life and family relationships, high levels of unmet need, and poorer quality of life compared to other cancer caregivers. They were also at increased risk for various psychiatric disorders and reported a persistent lack of support which exacerbated the psychosocial impact. Conclusions Pancreatic cancer caregivers experience negative psychosocial impacts, exacerbated by the disease’s trajectory. Feelings of a lack of support were reflected throughout the included literature and emphasise the need for future research into how pancreatic cancer caregivers may be best supported, and sign-posted to existing support, to minimise the substantial psychosocial impact they may experience.
Exploring the supportive care needs of families affected by pancreatic cancer: a mixed-methods study protocol
Background Pancreatic cancer is an aggressive disease with most cases diagnosed at an advanced stage resulting in low survival rates. Family members often take on a role of supporting patients’ needs. Families tend to be unprepared for this and experience high levels of unmet needs and substantial impacts to their own wellbeing, heightened by the rapid deterioration and short life expectancy associated with pancreatic cancer. Aim The proposed study aims to explore the supportive care needs and associated psychosocial impact of pancreatic cancer on family members, and the role of support services in supporting these families. Methods A sequential explanatory mixed methods design will be utilised. Data collection will consist of three phases: (1) Survey of affected family members to explore their supportive care needs and psychological wellbeing; (2) Semi-structured interviews to explore the lived experiences of family members across the disease trajectory, their psychosocial adjustment, and their perceptions of support services; (3) Focus groups with support services providers to explore their experiences in providing support to affected families. Discussion By combining quantitative and qualitative approaches, this research aims to provide a comprehensive understanding of the challenges and opportunities in providing psychosocial support to families affected by pancreatic cancer, ultimately enhancing their quality of life during and after the cancer journey. The findings may help to inform the development and enhancement of support programs, tailored to meet the specific needs of affected families.
Co-design and evaluation of a digital serious game to promote public awareness about pancreatic cancer
Background Pancreatic cancer, ranking seventh in global cancer-related deaths, poses a significant public health challenge with increasing incidence and mortality. Most cases are diagnosed at an advanced stage, resulting in low survival rates. Early diagnosis significantly impacts prognosis, making symptom awareness crucial. Symptoms are often subtle, leading to delayed help-seeking behaviour. Patients and their carers prioritise increased public awareness, indicating a need for innovative approaches to promote awareness of the disease. Methods This study employed a quasi-experimental pre-test/post-test design to assess the relationship between a serious game and pancreatic cancer awareness. Members of the public ( N  = 727) were recruited internationally, via social media and with signposting by relevant organisations. Participants completed measures of symptom awareness and help-seeking intentions before and after playing the game. The serious game, co-designed with experts by lived experience, patient advocates and healthcare professionals, presented participants with a human anatomy diagram, with each section linked to a question about pancreatic cancer. Results The serious game demonstrated a statistically significant improvement on pancreatic cancer awareness based on matched paired t-tests. Due to missing data, paired comparisons were only possible for 489 cases. Symptom awareness scores exhibited a statistically significant increase from pre-test to post-test, with a large effect size ( p  < 0.001, d = 1.43). Help-seeking intentions also markedly improved, showing a significant increase from pre-test to post-test, with a large effect size ( p  < 0.001, d = 1.10). Independent-samples t-tests were also conducted to determine if there were any group differences on pre- to post-test changes based on age, gender, and previous knowledge and/or experience of pancreatic cancer. Participants overwhelmingly endorsed the game’s usability and educational value, suggesting its potential as an effective tool for enhancing public awareness and proactive health-seeking behaviour. Discussion This study is the first to explore a serious game’s utility in pancreatic cancer awareness. Results suggest that such interventions can effectively increase public awareness and influence help-seeking intentions. The co-design process ensured content relevance, and participant satisfaction was high. Findings highlight the game’s potential as an accessible and convenient tool for diverse populations.
Exploring patient experiences of cancer care in Northern Ireland: A thematic analysis of free-text responses to the 2018 Northern Ireland Patient Experience Survey (NICPES)
Background Cancer diagnosis, treatment and survivorship is multifaceted, and the cancer patient experience can serve as a key indicator of healthcare performance and quality. The purpose of this paper was to analyse free-text responses from the second Northern Ireland Cancer Patient Experience Survey (NICPES) in 2018, to understand experiences of care, emerging themes and identify areas for improvement. Methods A 72-item questionnaire (relating to clinical care experience, socio-demographics and 3 free-text questions) was distributed to all Health & Social Care Northern Ireland patients that met the inclusion criteria (≥ 16 years old; confirmed primary diagnosis of cancer and discharged between 1st May and 31st October 2017) in June 2018. Participants could complete the questionnaire online or access a free telephone support line if required. Open-ended free text responses were analysed thematically to identify common themes. Free text responses were divided into positive or negative comments. Results In total, 3,748 people responded to the survey, with 2,416 leaving at least one free text comment (69 %). Women aged 55–74 years were most likely to comment. Overall, 3,644 comments were left across the three comments boxes, which were categorised as either positive (2,462 comments; 68 %) or negative / area for improvement (1,182 comments; 32 %). Analysis of free text responses identified six common themes (staff; speed [diagnosis and treatment]; safety; system; support services and specific concerns), which were all related to the overarching theme of survival. Staff was the largest single theme (1,458 responses) with overwhelmingly positive comments (1,322 responses; 91 %), whilst safety (296 negative comments; 70 %) and system (340 negative comments; 81 %) were predominantly negative. Negative comments relating to primary care, aftercare and the cancer system were reported. Conclusions The high response rate to the free text comments indicates patients were motivated to engage. Analysis indicates most comments provided were positive in nature. Most survey respondents reported a positive experience in relation to staff. However, there were a number of areas for improvement including the aftercare experience, and a perceived disconnect between primary care and cancer services. These results can help inform the effective delivery of cancer services in Northern Ireland.
Integrated palliative care and oncology: a realist synthesis
Background Existing evidence demonstrates the benefits of integrated palliative care for people with cancer, for improved symptom burden, quality of life for patient and caregiver, and appropriate healthcare resource use. The integration of palliative care and oncology has the potential to reduce suffering and is recommended by international guidelines. However, it is not yet consistent practice. There are many approaches to integration, but it is unclear what works, for whom, and in what contexts, to achieve the best possible outcomes for patients, families, and healthcare systems. Methods Realist review, conducted in accordance with RAMESES quality standards. Evidence was identified through systematic academic databases searches and stakeholder engagement. Data were extracted from included articles and synthesized using realist analysis to develop explanations of how and why integrated palliative care in oncology works, for whom, and in what contexts. Results One hundred sixty-four papers were included in the review, from 33 countries, and involving a range of inpatient, outpatient, and home-based care settings. Integrated palliative care and oncology could improve patient outcomes, increase the goal-concordance of patient care, and support workforce wellbeing. Interventions towards integration should be tailored to the context in which they are delivered. Ensuring the timely delivery of palliative care for people with cancer requires integration that overcomes siloes between oncology, specialist palliative care, and primary and community care. The motivation to prioritise the integration of palliative care relies upon all stakeholders first understanding its value. Enriched interdisciplinary collaboration involves developing staff skills and confidence, facilitating coordination between care settings, and supporting communication within and between teams. Leadership is needed at all levels to attend to the structural and social norms of care. Conclusions The success of integration is influenced by the ways in which palliative care is understood, prioritised, operationalised, and measured within oncology. Through the synthesis of international evidence, this project draws on implementation science to contribute clarity on how integrated palliative care and cancer care can be achieved in practice.