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1.
Lancet Oncol ; 25(5): 553-562, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38697154

RESUMEN

BACKGROUND: The growing and ageing prison population in England makes accurate cancer data of increasing importance for prison health policies. This study aimed to compare cancer incidence, treatment, and survival between patients diagnosed in prison and the general population. METHODS: In this population-based, matched cohort study, we used cancer registration data from the National Cancer Registration and Analysis Service in England to identify primary invasive cancers and cervical cancers in situ diagnosed in adults (aged ≥18 years) in the prison and general populations between Jan 1, 1998, and Dec 31, 2017. Ministry of Justice and Office for National Statistics population data for England were used to calculate age-standardised incidence rates (ASIR) per year and age-standardised incidence rate ratios (ASIRR) for the 20-year period. Patients diagnosed with primary invasive cancers (ie, excluding cervical cancers in situ) in prison between Jan 1, 2012, and Dec 31, 2017 were matched to individuals from the general population and linked to hospital and treatment datasets. Matching was done in a 1:5 ratio according to 5-year age group, gender, diagnosis year, cancer site, and disease stage. Our primary objectives were to compare the incidence of cancer (1998-2017); the receipt of treatment with curative intent (2012-17 matched cohort), using logistic regression adjusted for matching variables (excluding cancer site) and route to diagnosis; and overall survival following cancer diagnosis (2012-17 matched cohort), using a Cox proportional hazards model adjusted for matching variables (excluding cancer site) and route to diagnosis, with stratification for the receipt of any treatment with curative intent. FINDINGS: We identified 2015 incident cancers among 1964 adults (1556 [77·2%] men and 459 [22·8%] women) in English prisons in the 20-year period up to Dec 31, 2017. The ASIR for cancer for men in prison was initially lower than for men in the general population (in 1998, ASIR 119·33 per 100 000 person-years [95% CI 48·59-219·16] vs 746·97 per 100 000 person-years [742·31-751·66]), but increased to a similar level towards the end of the study period (in 2017, 856·85 per 100 000 person-years [675·12-1060·44] vs 788·59 per 100 000 person-years [784·62-792·57]). For women, the invasive cancer incidence rate was low and so ASIR was not reported for this group. Over the 20-year period, the incidence of invasive cancer for men in prison increased (incidence rate ratio per year, 1·05 [95% CI 1·04-1·06], during 1999-2017 compared with 1998). ASIRRs showed that over the 20-year period, overall cancer incidence was lower in men in prison than in men in the general population (ASIRR 0·76 [95% CI 0·73-0·80]). The difference was not statistically significant for women (ASIRR 0·83 [0·68-1·00]). Between Jan 1, 2012, and Dec 31, 2017, patients diagnosed in prison were less likely to undergo curative treatment than matched patients in the general population (274 [32·3%] of 847 patients vs 1728 [41·5%] of 4165; adjusted odds ratio (OR) 0·72 [95% CI 0·60-0·85]). Being diagnosed in prison was associated with a significantly increased risk of death on adjustment for matching variables (347 deaths during 2021·9 person-years in the prison cohort vs 1626 deaths during 10 944·2 person-years in the general population; adjusted HR 1·16 [95% CI 1·03-1·30]); this association was partly explained by stratification by curative treatment and further adjustment for diagnosis route (adjusted HR 1·05 [0·93-1·18]). INTERPRETATION: Cancer incidence increased in people in prisons in England between 1998 and 2017, with patients in prison less likely to receive curative treatments and having lower overall survival than the general population. The association with survival was partly explained by accounting for differences in receipt of curative treatment and adjustment for diagnosis route. Improved routine cancer surveillance is needed to inform prison cancer policies and decrease inequalities for this under-researched population. FUNDING: UK National Institute for Health and Care Research, King's College London, and Strategic Priorities Fund 2019/20 of Research England via the University of Surrey.


Asunto(s)
Neoplasias , Prisioneros , Humanos , Femenino , Masculino , Inglaterra/epidemiología , Incidencia , Persona de Mediana Edad , Neoplasias/epidemiología , Neoplasias/mortalidad , Neoplasias/terapia , Adulto , Prisioneros/estadística & datos numéricos , Anciano , Adulto Joven , Adolescente , Prisiones/estadística & datos numéricos , Estudios de Cohortes , Sistema de Registros/estadística & datos numéricos
2.
Psychooncology ; 33(4): e6317, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38573227

RESUMEN

INTRODUCTION: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs. METHODS: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions. RESULTS: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience. CONCLUSION: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.


Asunto(s)
Comunicación , Neoplasias , Niño , Humanos , Adolescente , Adulto Joven , Anciano , Narración , Emociones , Personal de Salud , Neoplasias/terapia
3.
Br J Cancer ; 126(12): 1725-1734, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35190694

RESUMEN

BACKGROUND: The association of diagnostic intervals and outcomes is poorly understood in adolescents and young adults with cancer (AYA). We investigated associations between diagnostic intervals and health-related quality of life (HRQoL), anxiety and depression in a large AYA cohort. METHODS: Participants aged 12-24 completed interviews post-diagnosis, providing data on diagnostic experiences and the patient-reported outcomes (PROs) HRQoL, anxiety and depression. Demographic and cancer information were obtained from clinical and national records. Six diagnostic intervals were considered. Relationships between intervals and PROs were examined using regression models. RESULTS: Eight hundred and thirty participants completed interviews. In adjusted models, across 28 of 30 associations, longer intervals were associated with poorer PROs. Patient intervals (symptom onset to first seeing a GP) of ≥1 month were associated with greater depression (adjusted odds ratio (aOR):1.7, 95% Confidence Interval (CI):1.1-2.5) compared to <1 month. ≥3 pre-referral GP consultations were associated with greater anxiety (aOR:1.6, CI:1.1-2.3) compared to 1-2 consultations. Symptom onset to first oncology appointment intervals of ≥2 months was associated with impaired HRQoL (aOR:1.8, CI:1.2-2.5) compared to <2 months. CONCLUSIONS: Prolonged diagnostic intervals in AYA are associated with an increased risk of impaired HRQoL, anxiety and depression. Identifying and delivering interventions for this high-risk group is a priority.


Asunto(s)
Neoplasias , Calidad de Vida , Adolescente , Ansiedad/epidemiología , Estudios Transversales , Depresión/epidemiología , Humanos , Neoplasias/diagnóstico , Adulto Joven
4.
J Adv Nurs ; 78(2): 498-509, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-34590738

RESUMEN

AIMS: The overall aim of this evaluation was to look at the impact of the changes in working practices during the pandemic on nurses. This secondary analysis provided an evaluation of virtual care and being able/required to work from home. DESIGN: This was secondary analysis of an evaluation using semi-structured interviews. METHODS: Conducted at a single National Health Service (NHS) university hospital in the United Kingdom between May and July 2020. Forty-eight operational leads and nurses participated in semi-structured interviews which were digitally recorded, transcribed verbatim and analysed using a framework analysis. RESULTS: Two overarching themes emerged relating to the patient experience and nursing experience. There were both positive and negative elements associated with virtual care and remote working related to these themes. However, the majority of nurses found that virtual clinics were useful when proper resources were provided, and managerial strategies were put in place to support them. Participants felt that virtual care could benefit many but not all patient groups moving forward, and that flexibility around working from home would be desirable in the future. CONCLUSION: Virtual care and remote working were implemented to accommodate the restrictions imposed because of the pandemic. The benefits of these changes to nurses and patients support these being business as usual. However, clear policies are needed to ensure that nurses feel supported when working remotely and there are robust assessments in place to ensure virtual care is provided to patients who have access to the necessary technology. IMPACT: This was a study of the move to virtual care and remote working during the COVID-19 pandemic. Telemedicine and flexible working were not common in the NHS prior to the pandemic but the current evaluation supports the role out of these as standard care with policies in place to ensure that nurses and patients are appropriately supported.


Asunto(s)
COVID-19 , Telemedicina , Humanos , Pandemias , SARS-CoV-2 , Medicina Estatal
5.
J Nurs Manag ; 30(7): 2845-2853, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-36056545

RESUMEN

AIMS: This article reports the results of a scoping review to identify initiatives for improving recruitment and retention of nurses in health care and ascertain their effectiveness. BACKGROUND: The global shortage of nurses has results in greater competition for vacant posts and an increased need to retain existing post holders. While there are a large number of publications discussing ways to improve recruitment and retention, the effectiveness of these needs to be established. EVALUATION: Thirteen papers met the inclusion criteria. There was no literature identified focusing on recruitment and only one paper reported a formal evaluation of a retention initiative. KEY ISSUES: Five themes summarized the initiatives for retaining nurses: leadership and support, ongoing professional development, recognition, work environment and flexible scheduling. CONCLUSION: While strategies have been proposed to retain nurses, there is a dearth of evidence supporting the effectiveness of these. IMPLICATIONS FOR NURSING MANAGEMENT: Although there is a lack of evaluations of retention strategies, the review identified a number of initiatives that warrant consideration. With the launch of the National Health Service People Plan in England in 2021, which is recommending initiatives identified in this review without robust evidence, an integrated programme of research evaluating this is recommended.


Asunto(s)
Personal de Enfermería , Medicina Estatal , Humanos , Liderazgo , Atención a la Salud , Recursos Humanos
6.
Br J Nurs ; 31(19): 976-982, 2022 Oct 27.
Artículo en Inglés | MEDLINE | ID: mdl-36306233

RESUMEN

BACKGROUND: With increasing demand for nursing services worldwide, the onus is on healthcare systems to implement measures to improve retention. The DAISY Award was designed to celebrate nursing with the suggestion that it may improve staff retention. AIM: To describe the experience and impact of winning the DAISY Award. METHOD: Data were collected through virtual semistructured interviews from award winners (n=4), nominees (n=4) and nominators (n=4). An analytical framework was developed to allow the responses of the three groups to be compared. FINDINGS: Four major themes emerged from the responses: awareness of the DAISY Award; the nomination process, the impact on retention and winner benefits. CONCLUSION: Being nominated or winning a DAISY Award had a positive impact on nurses' feelings towards their role. This was a small evaluation in a single organisation, so the value of adopting the DAISY Award for recognising nurses' contributions to patient care merits further investigation, especially with regards to its effects on retention.


Asunto(s)
Distinciones y Premios , Humanos , Sistema Inmunológico
7.
BMC Cancer ; 20(1): 697, 2020 Jul 28.
Artículo en Inglés | MEDLINE | ID: mdl-32723357

RESUMEN

BACKGROUND: The end of active treatment is a period of high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to understand the needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at the end of active treatment. METHODS: This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations. RESULTS: Telephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19-26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people's emotional well-being; and development of more information and resources specific to young people. CONCLUSION: The access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people's needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the 'end of treatment' transition process means.


Asunto(s)
Acceso a la Información , Cuidados Posteriores , Evaluación de Necesidades , Neoplasias/psicología , Apoyo Social , Adolescente , Adulto , Femenino , Guías como Asunto , Personal de Salud , Recursos en Salud , Humanos , Masculino , Relaciones Enfermero-Paciente , Relaciones Médico-Paciente , Investigación Cualitativa , Trabajadores Sociales , Participación de los Interesados , Adulto Joven
8.
Qual Life Res ; 29(8): 2287-2297, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-32227293

RESUMEN

PURPOSE: The aim of the study was to develop a patient-reported outcome measure for patients with sarcoma-the Sarcoma Assessment Measure (SAM). METHODS AND RESULTS: The systematic development of SAM included a three-stage, mixed-methods study using semi-structured interviews, focus groups and questionnaires, with all stages involving patients from across the United Kingdom. In-depth interviews were conducted with 121 patients (50% male; aged 13-82; with soft tissue sarcoma (62%), bone tumours (28%) and gastrointestinal stromal tumours (10%)). Content analysis of the interview transcripts identified 1415 post-diagnosis experience statements. Experience statements were reviewed, repetition was removed and sentences were refined to form 395 'items' which were included in an Item Reduction Questionnaire (IRQ) grouped as physical, emotional, social and financial wellbeing and sexuality. The IRQ was completed by 250 patients who rated each item on importance and worry. Items with a mean score above 5 (6 in the emotional domain) were removed, which reduced the list to 166 items. After review by the research team, 23 clinicians and 34 patients, 66 items were retained to test content validity. Items with a content validity ratio of < .33 were removed. Cognitive interviews were conducted with 10 patients on the final 22 items to test comprehension. Minor changes were made to four. CONCLUSION: SAM comprises of 22 items reflecting physical, emotional, social, financial wellbeing and sexuality. This systematic process of using patient experience to develop the content of SAM will ensure that it measures what is important to patients.


Asunto(s)
Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Sarcoma/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
9.
Eur J Cancer Care (Engl) ; 28(3): e13099, 2019 May.
Artículo en Inglés | MEDLINE | ID: mdl-31106505

RESUMEN

INTRODUCTION: Growing consensus describes it as "inappropriate" to deliver care to young people in either child or adult environments of care or in settings not equipped to meet their psychosocial needs. The aim of this review was to identify what patient and professional experience tells us about the culture of care specific to young people receiving cancer care in the UK. METHODS: A narrative review of published, UK-based research was conducted. Five online databases were searched using terms related to "culture of care," "cancer" and "adolescent." Papers were assessed for relevance, according to pre-determined criteria: 19/1,366 identified papers met our inclusion criteria. RESULTS: Studies included in this review were predominantly reflective of care received in specialist units. The findings were in support of "young people-friendly," "tailored environments," showing how they facilitate young people to have positive experiences of care. Communication, information delivery and patient choice were themes that were central to the culture of care. CONCLUSION: Highlighted was the need to provide care beyond addressing clinical needs through a young person-centred approach, to facilitate optimal experiences of care. However, to fully understand the culture of care, research needs to focus on the delivery of care outside of specialist units.


Asunto(s)
Servicios de Salud del Adolescente , Atención a la Salud , Neoplasias/terapia , Adolescente , Instituciones Oncológicas , Comunicación , Asistencia Sanitaria Culturalmente Competente , Cultura , Ambiente , Salud Holística , Humanos , Educación del Paciente como Asunto , Participación del Paciente , Atención Dirigida al Paciente , Grupo Paritario , Rol Profesional , Reino Unido , Adulto Joven
10.
J Clin Nurs ; 28(23-24): 4276-4297, 2019 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-31494997

RESUMEN

INTRODUCTION: Advance care planning is a means for patients to communicate their wishes, fears and desires for future health decisions should they lose the ability to consider or communicate these. Despite being supported by governments and healthcare leaders, uptake amongst the general population remains low. Nurses play a crucial role in promoting and engaging with these discussions given their close relationship with patients and families in a range of clinical settings. AIM: To describe the barriers that nurses and healthcare professionals believe prevent them from exploring advance care planning with their patients. METHOD: We carried out a systematic review of peer-reviewed journal articles from the databases MEDLINE, Embase, CINAHL Plus, Web of Science and ProQuest Central, guided by the PRISMA checklist. RESULTS: Eleven articles were identified: all were self-reporting surveys using a mix of open and closed questions. They originated in the USA, Canada, Australia and Ireland. The participants included various healthcare professionals, with the majority of studies focussing on nurses. The two most important barriers to advance care planning are lack of education and insufficient time. Advance care planning appears to be well supported, and nurses and healthcare professionals report themselves to be comfortable and confident to take on the responsibility. CONCLUSION: There is a need for greater education and training for nurses and healthcare professionals. In particular, there needs to be better understanding of professional and legal responsibilities. The need for sufficient time to be made available to allow these conversations, in often busy settings, will need institutional and financial support. RELEVANCE TO CLINICAL PRACTICE: Increased training and knowledge are likely to lead to more positive attitudes and greater confidence for nurses, and other healthcare professionals, which should help support and encourage patient engagement with advance care planning.


Asunto(s)
Planificación Anticipada de Atención , Actitud del Personal de Salud , Educación en Enfermería , Femenino , Personal de Salud/educación , Humanos , Participación del Paciente/psicología , Encuestas y Cuestionarios
11.
Stress ; 21(3): 267-273, 2018 05.
Artículo en Inglés | MEDLINE | ID: mdl-29451058

RESUMEN

Adolescence is a distinct developmental period characterized by behavioral and physiological maturation. Rapid ongoing changes during neurodevelopment in particular present potential opportunities for stress to have lasting effects on longitudinal outcomes of behavioral and neuroendocrine function. While adult stress effects on outcomes during adulthood have been characterized, little is known about the lasting effects of adolescent repeated stressor exposure on outcomes during adolescence. We have previously reported different stress responses in adolescent rats relative to adult rats, including a blunted fear response outcome in adulthood in rats stressed during adolescence. The present study characterized the ontogeny of behavioral and neuroendocrine responses to eight underwater trauma (UWT) exposures in rats over a two week poststress time period during adolescence (P34) or adulthood (P83) relative to age-matched control groups that underwent eight swimming episodes without UWT. Repeated UWT exposures starting in adolescence, but not adulthood, resulted in adverse behavioral responses on the elevated plus maze 1 day post-stress. Corticosterone responses did not differ between UWT-exposed and controls for either age group at 1 day or at 7 days poststress, although there was an effect of age on corticosterone levels. We conclude that repeated UWT stress events have a lasting, negative behavioral effect on adolescent rats that is not observed in adult rats after the two-week exposure window. These results suggest that neurophysiological mechanisms underlying recovery from a repeated stressor are immature in adolescence relative to adulthood in rats.


Asunto(s)
Inmersión/fisiopatología , Estrés Psicológico/psicología , Heridas y Lesiones/fisiopatología , Envejecimiento/psicología , Animales , Ansiedad/psicología , Conducta Animal , Corticosterona/sangre , Conducta Exploratoria , Ratas , Ratas Sprague-Dawley , Reflejo de Sobresalto , Natación/psicología , Agua
12.
Pediatr Blood Cancer ; 65(9): e27233, 2018 09.
Artículo en Inglés | MEDLINE | ID: mdl-29749691

RESUMEN

Underrepresentation of young people in cancer research is an international phenomenon and may contribute to poorer outcomes. We sought to identify systematically tested interventions and strategies to improve recruitment. The review identified 13 papers. The following four themes emerged: trial availability/regulatory factors; service configuration/place-of-care factors; recruitment methods and developmental factors specific to young people. We could not identify any studies that had employed prospective interventions to improve recruitment. Without available research studies in which to garner data on adolescents and young adults, we will always be constrained in our ability to provide evidence based care with resultant limitations on our ability to improve outcomes.


Asunto(s)
Ensayos Clínicos como Asunto , Neoplasias/terapia , Selección de Paciente , Adolescente , Ensayos Clínicos como Asunto/economía , Ensayos Clínicos como Asunto/legislación & jurisprudencia , Accesibilidad a los Servicios de Salud , Humanos , Estilo de Vida , Neoplasias/epidemiología , Psicología del Adolescente , Proyectos de Investigación , Adulto Joven
13.
Eur J Cancer Care (Engl) ; 27(6): e12972, 2018 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-30485604

RESUMEN

INTRODUCTION: The end of active treatment is a stressful period for adolescents and young adults (AYA), but little is known about AYA experiences at this time point. The aim was to describe the issues young people experienced and identify interventions to support AYA at the end of treatment. METHODS: We conducted a rapid review of published primary research to identify what is currently known about AYA experiences of the end of treatment, the issues which arise and existing interventions to support AYA at this time. RESULTS: Searches identified 540 papers of which 16 met the inclusion criteria. Five main themes were identified: physical/medical issues; psychological, social and emotional issues; information and support needs; sources of information and support; and difficulties accessing information and support. Within these broader themes, several subthemes were identified and explored further. CONCLUSION: Adolescents and young adults are under prepared for the unpredictable and ongoing nature of the physical, psychological and social issues they face at the end of cancer treatment. Enabling young people's inclusion within their relevant social and educational peer networks should be a priority. Timely, structured and equitable information/support is needed to prepare AYA for treatment ending and subsequent reintegration to "everyday" life.


Asunto(s)
Acceso a la Información , Supervivientes de Cáncer/psicología , Necesidades y Demandas de Servicios de Salud , Neoplasias/terapia , Transferencia de Pacientes , Apoyo Social , Adolescente , Adulto , Emociones , Humanos , Neoplasias/psicología , Adulto Joven
14.
J Clin Nurs ; 26(19-20): 3056-3066, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-27865010

RESUMEN

AIMS AND OBJECTIVES: To investigate the current practice and experience of sign-off mentors in one NHS trust. BACKGROUND: In the UK, sign-off mentors support nursing students in their last clinical placement and are accountable for the final assessment of fitness to practice as a registered nurse. DESIGN: Mixed-methods study. METHODS: The focus was on two key Nursing and Midwifery Council standards: the requirement for students to work at least 40% of their time on clinical placement with a sign-off mentor/mentor; the sign-off mentor had one-hour-per-week protected time to meet the final placement student. Data were collected through two audits of clinical and university documents and an experience survey administered to all sign-off mentors in one trust. RESULTS: The audits showed that only 22/42 (52%) of students were supervised by their sign-off mentor/mentor at least 40% of the time, whilst 10/42 (24%) students never worked a shift with their sign-off mentor. Only one student met their sign-off mentor every week. Complete data were available in 31/64 (47%) sign-off mentors, of whom 21/30 (70%) rarely/never had reduced clinical commitment to mentor final placement students. Furthermore, 19/28 (68%) met their student after their shift had ended with 24/30 (80%) reporting not getting any protected time. CONCLUSION: Sign-off mentors have inadequate time and resources to undertake their role, yet are accountable for confirming the student has the required knowledge and skills to practise safely. The current model needs urgent review to improve mentoring standards. RELEVANCE TO CLINICAL PRACTICE: Understanding how the role of the sign-off mentor is working in practice is critical to ensuring that the Nursing and Midwifery Council standards are met, ensuring students are well supported and appropriately assessed in practice, and mentoring is given the high profile it deserves to guarantee high-quality care and protecting the public.


Asunto(s)
Educación en Enfermería/normas , Mentores/estadística & datos numéricos , Enfermeras Obstetrices/educación , Investigación en Enfermería/métodos , Estudiantes de Enfermería/estadística & datos numéricos , Femenino , Humanos , Investigación Cualitativa , Medicina Estatal
15.
BMC Med Res Methodol ; 15: 20, 2015 Mar 14.
Artículo en Inglés | MEDLINE | ID: mdl-25888163

RESUMEN

BACKGROUND: Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. METHODS: Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. RESULTS: BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. CONCLUSIONS: Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity.


Asunto(s)
Neoplasias/terapia , Educación del Paciente como Asunto/métodos , Participación del Paciente/métodos , Investigación , Adolescente , Servicios de Salud del Adolescente , Adulto , Educación/métodos , Femenino , Humanos , Estudios Longitudinales , Masculino , Neoplasias/psicología , Participación del Paciente/psicología , Participación del Paciente/estadística & datos numéricos , Reproducibilidad de los Resultados , Proyectos de Investigación , Adulto Joven
16.
Health Qual Life Outcomes ; 13: 107, 2015 Jul 28.
Artículo en Inglés | MEDLINE | ID: mdl-26216214

RESUMEN

BACKGROUND: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. METHODS: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. RESULT: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. CONCLUSION: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.


Asunto(s)
Neoplasias/psicología , Calidad de Vida/psicología , Autoinforme , Encuestas y Cuestionarios/normas , Adaptación Psicológica , Adolescente , Anciano , Estudios de Cohortes , Femenino , Grupos Focales , Humanos , Estudios Longitudinales , Masculino , Neoplasias/terapia , Reproducibilidad de los Resultados , Proyectos de Investigación , Adulto Joven
17.
J Pediatr Nurs ; 30(1): 87-101, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25316197

RESUMEN

Advances in technology have offered health professionals alternative mediums of providing support to patients with long-term conditions. This critical review evaluated and assessed the benefit of electronic media technologies in supporting children and young people with long-term conditions. Of 664 references identified, 40 met the inclusion criteria. Supportive technology tended to increase disease-related knowledge and improve aspects of psychosocial function. Supportive technology did not improve quality of life, reduce health service use or decrease school absences. The poor methodological quality of current evidence and lack of involvement of users in product development contribute to the uncertainty that supportive technology is beneficial.


Asunto(s)
Tecnología Biomédica/métodos , Enfermedad Crónica/psicología , Niños con Discapacidad/rehabilitación , Calidad de Vida , Adolescente , California , Niño , Enfermedad Crónica/terapia , Niños con Discapacidad/psicología , Tecnología Educacional/métodos , Femenino , Humanos , Cuidados a Largo Plazo , Masculino , Psicología , Ensayos Clínicos Controlados Aleatorios como Asunto , Reino Unido
18.
Radiother Oncol ; 191: 110071, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38142933

RESUMEN

The implementation of PROMs into clinical practice has been shown to improve quality of care. This systematic review aims to identify which PROMs are suitable for implementation within routine clinical practice in a radiotherapy or PBT service.The bibliographic databases MEDLINE, EMBASE and EMCARE were searched. Articles published between 1st January 2008 to 1st June 2023, that reported PROMs being utilised as an outcome measure were included. Inclusion criteria also included being written in English, involving human patients, aged 16 and above, receiving external beam radiotherapy or PBT for six defined tumour sites. PROMs identified within the included articles were subjected to quality assessment using the COSMIN reporting guidelines. Results are reported as per PRISMA guidelines. A total of 268 studies were identified in the search, of which 52 fulfilled the inclusion criteria. The use of 39 different PROMs was reported. The PROMs identified were mostly tumour or site-specific quality of life (n = 23) measures but also included generic cancer (n = 3), health-related quality-of-life (n = 6), and symptom specific (n = 7) measures.None of the PROMs identified received a high GRADE score for good content. There were 13 PROMs that received a moderate GRADE score. The remaining PROMs either had limited evidence of development and validation within the patient cohorts investigated, or lacked relevance or comprehensiveness needed for routine PROMs collection in a radiotherapy or PBT service.This review highlights that there are a wide variety of PROMs being utilised within radiotherapy research, but most lack specificity to radiotherapy side-effects. There is a risk that by using non-specific PROMs in clinical practice, patients might not receive the supportive care that they need.


Asunto(s)
Neoplasias , Terapia de Protones , Humanos , Calidad de Vida , Medición de Resultados Informados por el Paciente , Neoplasias/radioterapia , Evaluación de Resultado en la Atención de Salud
19.
Dimens Crit Care Nurs ; 43(4): 202-211, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38787776

RESUMEN

BACKGROUND: Artificial airways are essential in various clinical settings to maintain a patient's airway and provide necessary support for ventilation and oxygenation. These devices are commonly temporary and come in several types, each serving specific purposes. Understanding the indications, types, and proper care of artificial airways is crucial for health care professionals to ensure patients receive optimal care and prevent complications. OBJECTIVE: This article aims to review the indications for using artificial airways and discuss the most commonly used types, including supraglottic airway devices, endotracheal tubes, tracheostomy tubes, and laryngectomy tubes. It also provides insights into the procedures involved in intubation and percutaneous tracheostomy and offers guidance on patient management, emphasizing assessment, oral care, suctioning, and humidification for patients with these airway devices. CONCLUSION: This article underscores the significance of understanding artificial airways, not just as a set of skills but as a commitment to patient welfare. Health care professionals who master the knowledge and care of these devices can significantly contribute to their patients' well-being and quality of life.


Asunto(s)
Intubación Intratraqueal , Traqueostomía , Humanos , Traqueostomía/enfermería , Intubación Intratraqueal/enfermería , Manejo de la Vía Aérea/métodos , Respiración Artificial
20.
Cancer Nurs ; 2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38656263

RESUMEN

BACKGROUND: Family relationships and social networks are critically important to adolescents and young adults (AYAs) with cancer, impacting their experience and well-being throughout the cancer trajectory. A cancer diagnosis impacts the development of independence and an adult identity, which can present challenges to psychosocial well-being needs and relationships between caregivers and AYAs. OBJECTIVE: The aim of this study was to explore the psychosocial and support needs of the main caregivers of AYAs. METHODS: This is a secondary analysis of the BRIGHTLIGHT caregiver survey, exploring items pertaining to support offered/engaged with, appraisal of helpfulness, and caregivers' emotional and psychological distress experience. Descriptive statistics, a correlational analysis, and a 1-way analysis of variance were conducted. RESULTS: There were 518 caregiver responses (62%). Over half received information about their caregiving needs, with the majority finding this very/fairly helpful. Most (80%) of those who had not received the information would have valued it. High levels of negative emotional and psychological well-being were reported, with 91% feeling depressed or anxious since the AYAs' diagnosis and 41% always/often experiencing these feelings. Total distress was associated with being younger, a parent, female, and unemployed, and earning a below-average income. CONCLUSIONS: The needs of caregivers are broad and multidimensional; however, some characteristics were associated with higher distress. When caregiver-specific information was provided by healthcare professionals, it was well received. IMPLICATIONS FOR PRACTICE: Healthcare professionals should consider caregivers' needs individually and provide/signpost to support. Caregivers need to be involved in designing and implementing future research, given the heterogeneity of needs identified.

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