ABSTRACT
OBJECTIVES: Each year in the United Kingdom there are around 5,000 inter-hospital transfers of critically ill children into PICUs. There are few published descriptions of what this experience is like for parents. The objective was to describe parents' experiences of the inter-hospital transfer of their critically ill child to a PICU. DESIGN: Qualitative in-depth interviews. SETTING: Twenty-four PICUs in England and Wales. PARTICIPANTS: Parent interview participants ( n = 30) were purposively sampled from a larger pool of parent questionnaire respondents to create a sample diverse in child's age, presenting medical illness, retrieval team and whether a parent traveled in the ambulance. MEASUREMENT AND MAIN RESULTS: Open-ended semi-structured interviews using topic guides to encourage parents to describe their experiences of transfer. Interviews were audio recorded, transcribed verbatim and thematically analyzed using Framework Analysis. Parents' perceptions of transport staff as confident and competent through observation of clinical care, and positive communication experiences during the transfer process, were related to feelings of trust and being supported, as well as relief from distress. Parents varied in their needs for conversation and support. Parents who did not travel in the ambulance had fewer opportunities to interact with the transport team and experienced different challenges in the period prior to their child's admission to the PICU. CONCLUSIONS: Retrieval teams can influence how parents experience their child's emergency transfer to the PICU, offering parents proximity to knowledgeable staff. Satisfaction may be related to matching parents' needs. Understanding parents' needs and optimizing opportunities for effective communication between parents and staff are beneficial to parents.
Subject(s)
Bereavement , Critical Illness , Child , Humans , Critical Illness/therapy , Intensive Care Units, Pediatric , Hospitals , United Kingdom , Parents , Qualitative ResearchABSTRACT
OBJECTIVE: This study investigated perspectives of healthcare professionals (HCPs) on the feasibility of giving additional support to patients after cancer is not found following urgent referral. We sought to understand key facilitators or barriers to offering such support. METHODS: A convenience sample of primary and secondary care healthcare professionals (n = 36) participated in semi-structured interviews. Interviews were transcribed verbatim and analysed using Framework Analysis, inductively and deductively, guided by the Theoretical Domains Framework. RESULTS: HCPs indicated that support should be offered if proven to be efficacious. It needs to avoid potential negative consequences such as patient anxiety and information overload. HCPs were more hesitant about whether support could feasibly be offered, due to resource restrictions and perceived remit of the urgent pathway for suspected cancer. CONCLUSION: HCP support after discharge from urgent cancer referral pathways needs to be resource efficient, developed in collaboration with patients and should have proven efficacy. Development of brief interventions for delivery by a range of staff, and use of technology could mitigate barriers to implementation. PRACTICE IMPLICATIONS: Changes to discharge procedures to provide information, endorsement or direction to services could offer much needed support. Additional support would need to overcome logistical challenges and address limited capacity.
Subject(s)
Early Detection of Cancer , Neoplasms , Humans , Feasibility Studies , Qualitative Research , Health Personnel , Neoplasms/diagnosis , Neoplasms/prevention & control , Referral and ConsultationABSTRACT
OBJECTIVES: Quality standards for pediatric intensive care transport services in the U.K. state that at least one parent should be allowed to travel with their child during emergency transport to a PICU. We aimed to identify the reasons why parents do, or do not, accompany their child and whether there is an association between parental presence in the ambulance and their satisfaction with the transport. DESIGN: National cross-sectional parent questionnaire. SETTING: Pediatric Critical Care Transport (PCCT) teams and PICUs in England and Wales. PARTICIPANTS: Parents of children transferred to one of 24 participating PICUs between January 2018 and January 2019. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A parent feedback questionnaire was completed by parents whose child received an emergency interhospital transfer. As part of the questionnaire, a brief nine-item scale was developed to summarize parental transport experience (ranging from 1 to 5). The association between parental presence in the ambulance and parental experience was analyzed. A total of 4,558 children were transported during the study. Consent was obtained from 2,838 parents, and questionnaires received in 2,084 unique transports (response rate: 45.7%). In 1,563 transports (75%), at least one parent traveled in the ambulance. Parents did not travel in 478 transports (23%) and, in most instances (442 transports; 93%), offered reasons (emotional, practical, and health-related) for declining to travel or explanations why they were not permitted to travel (mainly due to space restrictions). Most parents rated their experience with the retrieval teams very highly, and within this context, we found evidence of greater variability in experience ratings if parents were not present in the ambulance and if this was not their choice. CONCLUSIONS: Most parents who completed questionnaires rated their experience with their PCCT team highly. Parental presence and choice to travel in the ambulance were associated with a more positive experience.
Subject(s)
Ambulances , Personal Satisfaction , Child , Critical Care , Cross-Sectional Studies , Humans , Intensive Care Units, Pediatric , Parents/psychology , Surveys and QuestionnairesABSTRACT
BACKGROUND: A third of children admitted to paediatric intensive care units (PICUs) in the United Kingdom (UK) are transported by paediatric critical care transport services (PCCTs). Parents have described the transfer journey as particularly stressful. Critical care nurses have a key role in mitigating the impact of the journey on parents. Evaluating parents' experiences is important to inform service improvements. AIM AND OBJECTIVES: Our aim was to describe the development of a new measure of parents' experiences of PCCTs, derived from data collected in the Differences in access to Emergency Paediatric Intensive Care and care during Transport (DEPICT) study. DESIGN: A descriptive cross-sectional survey was used. METHODS: As part of the DEPICT study, a 17-item transport experience questionnaire was developed and given to parents of children transported by PCCTs to 24 UK PICUs during a 12-month period. Analyses included exploratory factor analysis and a validation review by a PCCT stakeholder group. RESULTS: Families of 1722 children (1798 journeys) completed questionnaires. Five items were excluded from further analysis as correlation coefficients were <0.3. Two factors explained 53% of the variance and all 12 items loaded on one of these factors. Factor 1 (8 items) explained 47% of the variance, had excellent internal reliability and the clustered items were conceptually coherent with a specific relevance to PCCTs; these were offered for consideration, with other items possibly discarded. Twenty-eight PCCT clinicians reviewed the questions. Using a 70% agreement threshold, one additional, previously discarded, item was identified for inclusion, resulting in a nine-item experience measure. CONCLUSION: Our brief measure of parents' experience of critical care transport provides a standardized measure that can be used across all PCCTs, enabling national benchmarking of services and potentially increasing the collection and use of parent experience data to improve services. RELEVANCE TO CLINICAL PRACTICE: Being able to measure experience provides an opportunity to understand how to make services better to improve experience.
Subject(s)
Intensive Care Units, Pediatric , Parents , Child , Critical Care , Cross-Sectional Studies , Humans , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
People undergoing investigations for suspected cancer have to undergo a number of investigations before they know their full diagnosis and treatment plan. We examined predictors of distress among patients undergoing staging investigations for suspected colorectal or lung cancer. Patients were prospectively recruited to two multi-centre trials comparing WB-MRI with standard scans. Patients completed a questionnaire, administered at trial recruitment, measuring demographic and psychological variables (n = 129, 66 colorectal, 63 lung; median age 66.4, range: 31-89). Predictors of distress were analysed using logistic regression. Forty percent of patients reported high distress (a score of 4 or higher on the GHQ-12). Higher deprivation and greater intolerance of uncertainty (IU) predicted high distress in both unadjusted (low deprivation: OR 0.352, 95% CIs 0.144 to 0.860, p = 0.022; IU: OR 1.972, 95% CIs: 1.357 to 2.865, p < 0.001) and adjusted analyses (low deprivation: OR 0.243, 95% CIs 0.083 to 0.714, p = 0.010; IU: OR 2.231, 95% CIs 1.429 to 3.485, p < 0.001). Age, gender, presence of comorbid illness, cancer type, probable knowledge of cancer diagnosis, and a final diagnosis of cancer did not predict high distress. Future research should examine how to reduce distress in patients undergoing investigations for cancer, particularly among those who find uncertainty difficult to manage.
Subject(s)
Colorectal Neoplasms , Lung Neoplasms , Stress, Psychological , Adult , Aged , Aged, 80 and over , Colorectal Neoplasms/pathology , Colorectal Neoplasms/psychology , Humans , Lung Neoplasms/pathology , Lung Neoplasms/psychology , Middle Aged , Neoplasm Staging , Prospective Studies , Stress, Psychological/epidemiology , Whole Body ImagingABSTRACT
OBJECTIVES: To determine the importance placed by patients on attributes associated with whole-body MRI (WB-MRI) and standard cancer staging pathways and ascertain drivers of preference. METHODS: Patients recruited to two multi-centre diagnostic accuracy trials comparing WB-MRI with standard staging pathways in lung and colorectal cancer were invited to complete a discrete choice experiment (DCE), choosing between a series of alternate pathways in which 6 attributes (accuracy, time to diagnosis, scan duration, whole-body enclosure, radiation exposure, total scan number) were varied systematically. Data were analysed using a conditional logit regression model and marginal rates of substitution computed. The relative importance of each attribute and probabilities of choosing WB-MRI-based pathways were estimated. RESULTS: A total of 138 patients (mean age 65, 61% male, lung n = 72, colorectal n = 66) participated (May 2015 to September 2016). Lung cancer patients valued time to diagnosis most highly, followed by accuracy, radiation exposure, number of scans, and time in the scanner. Colorectal cancer patients valued accuracy most highly, followed by time to diagnosis, radiation exposure, and number of scans. Patients were willing to wait 0.29 (lung) and 0.45 (colorectal) weeks for a 1% increase in pathway accuracy. Patients preferred WB-MRI-based pathways (probability 0.64 [lung], 0.66 [colorectal]) if they were equivalent in accuracy, total scan number, and time to diagnosis compared with a standard staging pathway. CONCLUSIONS: Staging pathways based on first-line WB-MRI are preferred by the majority of patients if they at least match standard pathways for diagnostic accuracy, time to diagnosis, and total scan number. KEY POINTS: ⢠WB-MRI staging pathways are preferred to standard pathways by the majority of patients provided they at least match standard staging pathways for accuracy, total scan number, and time to diagnosis. ⢠For patients with lung cancer, time to diagnosis was the attribute valued most highly, followed by accuracy, radiation dose, number of additional scans, and time in a scanner. Preference for patients with colorectal cancer was similar. ⢠Most (63%) patients were willing to trade attributes, such as faster diagnosis, for improvements in pathway accuracy and reduced radiation exposure.
Subject(s)
Colorectal Neoplasms/diagnostic imaging , Lung Neoplasms/diagnosis , Neoplasm Staging/methods , Patient Preference/statistics & numerical data , Whole Body Imaging/methods , Adult , Aged , Colorectal Neoplasms/pathology , Female , Humans , Magnetic Resonance Imaging/methods , Male , Middle Aged , Positron Emission Tomography Computed Tomography/methods , Positron-Emission Tomography/methods , Prospective Studies , Regression Analysis , Surveys and Questionnaires , Tomography, X-Ray Computed/methodsABSTRACT
BACKGROUND: In the UK there has been an effort, through the National Awareness and Early Diagnosis Initiative (NAEDI), to increase early stage diagnoses and ultimately cancer survival. Encouraging early symptom presentation through awareness-raising activities in primary care is one method to achieve this goal. Understanding GPs' views about this type of activity, however, is crucial prior to implementation. AIM: To describe GPs' attitudes to raising public awareness of gynaecological cancers, and their views about the potential impact on primary care services. DESIGN AND SETTING: An online survey with a convenience sample recruited from 1860 UK general practices. METHOD: An invitation was emailed to GPs via practice managers and included a weblink to a draft education leaflet and an online survey about the impact of sending a leaflet giving information about symptoms associated with gynaecological cancers to all women on GPs' lists. Participants could offer additional free text comments which were coded using content analysis. RESULTS: A total of 621 GPs participated. Most (77%, 477) felt that raising awareness of cancers was important. Only half (50%, 308), however, indicated that they would distribute such a leaflet from their practice. Barriers to implementation included concerns about financial costs; emotional impact on patients; increased demand for appointments and diagnostic services, such as ultrasound. CONCLUSIONS: GPs were generally positive about an intervention to improve patients' awareness of gynaecological cancers, but had concerns about increasing rates of presentation. There is a need for research quantifying the benefits of earlier diagnosis against resource costs such as increased consultations, investigations, and referrals.
Subject(s)
Awareness , Early Detection of Cancer/statistics & numerical data , General Practitioners/organization & administration , Genital Neoplasms, Female/diagnosis , Health Education/organization & administration , Referral and Consultation/statistics & numerical data , Adult , Aged , Analysis of Variance , Delayed Diagnosis/statistics & numerical data , Female , Genital Neoplasms, Female/epidemiology , Genital Neoplasms, Female/therapy , Health Care Surveys , Health Knowledge, Attitudes, Practice , Humans , Incidence , Middle Aged , Observer Variation , Physician-Patient Relations , Practice Patterns, Physicians'/standards , Practice Patterns, Physicians'/trends , Primary Health Care/organization & administration , Reproducibility of Results , Surveys and Questionnaires , Time Factors , United KingdomABSTRACT
BACKGROUND: The value of testicular cancer (TC) education, and in particular advice on testicular self-examination (TSE), has been widely debated by health professionals. One concern centres on its potential to cause unnecessary anxiety among the target population. Views outside the health professional community about TC education's potential benefits and harms have not previously been described. The objective of this study was to investigate the range of views expressed by specific groups thought to have an interest in provision of TC education. METHODS: One-to-one, in-depth interviews with 37 men and women were completed. Participants included TC patients, men with no prior diagnosis of TC, and parents and teachers of adolescent boys. Verbatim transcripts were analysed using the Framework approach to produce a thematic description of views expressed. RESULTS: Participants were unanimously in favour of TC education. Key perceived benefits included earlier cancer detection through increasing knowledge of symptoms leading to better treatment outcomes, and motivating help-seeking by reducing emotional barriers such as fear of cancer or embarrassment. Anxiety was acknowledged as a possible harm but was not expected to be widespread or serious. CONCLUSION: TC education is viewed favourably by members of the public likely to be interested in its provision. Education's potential to cause anxiety was not considered a disincentive to promoting disease awareness.
Subject(s)
Health Knowledge, Attitudes, Practice , Patient Education as Topic , Testicular Neoplasms/diagnosis , Humans , Male , Qualitative ResearchABSTRACT
Human papillomavirus (HPV) vaccination is now offered to adolescent girls in the UK. Adolescents over 16 years old are likely to make their own decision about the vaccination. The purpose of this cross-sectional study was to assess acceptability of HPV vaccination among female adolescents (16 -- 19 years) and investigate socio-cultural variation in intended acceptance. Participants were recruited through two further-education colleges in England. They read information about HPV before responding to questions assessing acceptability, demographics and attitudes based on the Health Belief Model. There were 367 cases included in analyses. Most participants said they would be likely to accept HPV vaccination (89%). Ethnicity, religion and English as a first language were associated with acceptability (pseudo-R(2)=0.11). In multivariate analysis only religion remained significant, with girls from Muslim (OR=0.20, CI: 0.05 -- 0.90) or Hindu/Sikh (OR=0.09, CI: 0.01 -- 0.56) backgrounds less likely to accept vaccination. Perceived susceptibility, benefits and barriers were also associated with acceptability (pseudo-R(2)=0.25), but did not mediate the effect of the ethnicity-related variables. Interventions based on the health belief model may help encourage HPV vaccine acceptance among adolescents. Future research to understand the issues associated with HPV vaccination in different religious groups is needed.
Subject(s)
Papillomavirus Vaccines/immunology , Patient Acceptance of Health Care , Vaccination/psychology , Adolescent , Adult , Attitude to Health , Cross-Sectional Studies , Culture , Female , Humans , Religion , Surveys and QuestionnairesABSTRACT
OBJECTIVE: To assess uptake of once-only flexible sigmoidoscopy (FS) in a community sample to determine whether FS would be viable as a method of population-based screening for colorectal cancer. METHODS: All adults aged 60-64 years registered at three General Practices in North West London, UK (510 men and women) were sent a letter of invitation to attend FS screening carried out by an experienced nurse, followed by a reminder if they did not make contact to confirm or decline the invitation. The primary outcome was attendance at the endoscopy unit for a FS test. RESULTS: Of the 510 people invited to attend, 280 (55%) underwent FS. Among non-attenders, 91 (18%) were ineligible for screening or did not receive the invitation, 19 (4%) accepted the offer of screening but were unable to attend during the study period, 52 (10%) declined the offer, 41 (8%) did not respond to the invitation, and 27 (5%) accepted the offer of screening but did not attend. Attendance among those eligible to be screened, who had received the invitation, was 67%. People from more socioeconomically deprived neighbourhoods were less likely to attend (odds ratio [OR] = 0.90; confidence interval [CI] = 0.84-0.96; P = 0.003). Women were more likely to attend than men (OR = 1.44; CI = 1.01-2.05; P = 0.041). CONCLUSIONS: Attendance rates in this pilot for nurse-led, population-based FS screening were higher than those reported in other FS studies, and comparable with adherence to fecal occult blood testing (FOBT) in the UK FOBT pilot. Having a female nurse endoscopist may have been responsible for increasing female uptake rates but this warrants confirmation in a larger study.