Does Experience Predict Knowledge and Behavior With Respect to Cutaneous Melanoma, Moles, and Sun Exposure? Possible Outcome Measures
In: Behavioral medicine, Band 26, Heft 2, S. 74-79
ISSN: 1940-4026
10 Ergebnisse
Sortierung:
In: Behavioral medicine, Band 26, Heft 2, S. 74-79
ISSN: 1940-4026
In: International journal of population data science: (IJPDS), Band 7, Heft 1
ISSN: 2399-4908
IntroductionFactors that affect public and professionals' attitudes towards the collection and linkage of health and other data have been explored in the literature. Thus far there has been no study exploring attitudes towards the collection of child maltreatment data.
ObjectivesOur aim is to explore attitudes regarding the collection and linkage of maltreatment data for research.
MethodsParticipants included younger mothers, older mothers, care-experienced young people, and professionals who were responsible for recording child maltreatment data. Four face-to-face focus groups were conducted, one with younger mothers (n = 6), one with older mothers (n = 10), and two with care-experienced young people (n = 6 and n = 5). An online focus group was conducted with professionals (n = 10), two of whom additionally participated in telephone interviews. Transcribed audio-recorded data were inductively coded, a portion were double-coded by a second researcher, and thematically analysed.
ResultsThree major themes were identified. The first concerned issues of consent, specifically the conditions for providing consent and factors influencing this. The second concerned trust in data security and validity, the organisations and individuals providing and using the data, and how the information provided shapes attitudes. The third theme explored the benefits of research and the researchers' role in child protection. Participants wanted the choice of providing consent for data collection, especially when consenting on behalf of another, but there were concerns that maltreated children were unidentifiable in anonymised datasets. Care-experienced young people were concerned about data collection from Social Services records due to their sensitivity. There was a general lack of understanding about how research data is viewed and the accuracy of records.
ConclusionsNovel findings in the study were strongly related to the sensitive nature of the topic. The findings may be particularly useful when designing research studies and participant materials and a co-productive approach to this should be taken.
In: International journal of population data science: (IJPDS), Band 3, Heft 3
ISSN: 2399-4908
IntroductionResearchers are increasingly using routinely collected data in addition to, or instead of, other data collection methods. The UK government continues to invest in research centres to encourage use of these data, and trials and cohort studies utilise data linkage methods in the follow-up of participants. This does not come without its limitations and challenges, such as data access delays.
ObjectiveThis paper outlines the challenges faced by three projects utilising individual-level routinely-collected linked data for the longer-term follow-up of participants.
MethodsThese studies are varied in design, study population and data providers. One researcher was common to the three studies and collated relevant study correspondence, formal documentary evidence such as data sharing agreements and, where relevant, meeting records to review. Key themes were identified and reviewed by other members of the research teams. Mitigating strategies were identified and discussed with a data provider representative and a broader group of researchers to finalise the recommendations presented.
ResultsThe challenges discussed are grouped into five themes: Data application process; Project timelines; Dependencies and considerations related to consent; Information Governance; Contractual. In presenting our results descriptively we summarise each case study, identify the main cross-cutting themes and consider the potential for mitigation of challenges.
ConclusionsWe make recommendations that identify responsibilities for both researchers and data providers for mitigating and managing data access challenges. A continued conversation within the research community and with data providers is needed to continue to enable researchers to access and utilise the wealth of routinely-collected data available. The suggestions made in this paper will help researchers be better prepared to deal with the challenges of applying for data from multiple data providers.
In: Journal of applied research in intellectual disabilities: JARID, Band 26, Heft 1, S. 63-70
ISSN: 1468-3148
AimTo explore the experience of 'lay therapists' of a group‐based cognitive behaviour therapy (CBT) anger management intervention.BackgroundStaff employed in daytime opportunity services for adults with intellectual disabilities took on the role of 'lay therapist' to facilitate CBT groups.MethodsThey were trained and supervised by clinical psychologists and interviewed 2–6 weeks after the last group session. Their experiences were explored by means of a qualitative approach, interpretative phenomenological analysis (IPA).ResultsSeveral key themes emerged from the interview data such as 'hopes and fears', 'having a framework', 'making it work', 'observing progress', 'ingredients of success', 'the therapist role' and 'taking the group forward'.ConclusionsThese themes indicate that participants' experiences had been perceived as positive for themselves, the service users as well as the relevant organization although initially the therapist role had appeared daunting.
In: International journal of population data science: (IJPDS), Band 5, Heft 4
ISSN: 2399-4908
IntroductionDomiciliary care workers (DCWs) continued providing social care to adults in their own homes throughout the COVID-19 pandemic. Evidence of the impact of COVID-19 on health outcomes of DCWs is currently mixed, probably reflecting methodological limitations of existing studies. The risk of COVID-19 to workers providing care in people's homes remains unknown.
ObjectivesTo quantify the impact of COVID-19 upon health outcomes of DCWs in Wales, to explore causes of variation, and to extrapolate to the rest of the UK DCW population.
MethodsMixed methods design comprising cohort study of DCWs and exploratory qualitative interviews. Data for all registered DCWs in Wales is available via the SAIL Databank using a secured, privacy-protecting encrypted anonymisation process. Occupational registration data for DCWs working during the pandemic will be combined with EHR outcome data within the SAIL Databank including clinical codes that identify suspected and confirmed COVID-19 cases. We will report rates of suspected and confirmed COVID-19 infections and key health outcomes including mortality and explore variation (by factors such as age, sex, ethnicity, deprivation quintile, rurality, employer, comorbidities) using regression modelling, adjusting for clustering of outcome within Health Board, region and employer. A maximum variation sample of Welsh DCWs will be approached for qualitative interview using a strategy to include participants that vary across factors such as sex, age, ethnicity and employer. The interviews will inform the quantitative analysis modelling. We will generalise the quantitative findings to other UK nations.
DiscussionUsing anonymised linked occupational and EHR data and qualitative interviews, the OSCAR study will quantify the risk of COVID-19 on DCWs' health and explore sources of variation. This will provide a secure base for informing public health policy and occupational guidance.
In: International journal of population data science: (IJPDS), Band 4, Heft 3
ISSN: 2399-4908
Background Guidelines recommend the prompt diagnosis and treatment of UTI in young children to reduce the risk of renal scarring and possible long-term complications. However, the evidence for this association is weak and has been questioned. There is an urgent need to clarify this as the correct approach to urine sampling and diagnosis of UTI in children hinges on this association.
Main Aim Determine outcomes following UTI in childhood (<5years)
Approach We used the Secure Anonymised Information Linkage (SAIL) Databank to access demographic, hospital, GP and microbiology data from children in Wales. Children with >1 microbiologically confirmed UTI (mcUTI) aged <5, were compared to those with no mcUTI. The primary outcome was renal scarring and secondary outcomes included hypertension, chronic kidney disease and renal failure. The primary analysis used multinomial regression and time to event models.
Results A cohort of 159,201 children was defined. 11,099 (7.0%) had >1 mcUTI.
The overall prevalence of renal scarring in the cohort by age 7 was 0.16%; 1.26% in those with >1 mcUTI; 0.08% in those with no mcUTI. The unadjusted odds ratio (OR) was 16.62 (12.91-21.39) and adjusted 3.64 (2.57-5.14). Among the group with >1 mcUTI, predictors of renal scarring were VUR, younger age of first UTI, and greater number of UTIs <5
Conclusion UTI was associated with renal scarring even after adjusting for covariates.
The prevalence of renal scarring in children with >1 mcUTI was lower than expected. Possible explanations include poor coding in routine data, different patient populations or missed renal scarring diagnoses. We are currently validating our results using radiology data. If renal scarring diagnoses are being missed, a more proactive urine sampling and imaging strategy may be indicated. However, if renal scarring rates are low following UTI, this may not be necessary.
In: Journal of applied research in intellectual disabilities: JARID, Band 26, Heft 5, S. 410-419
ISSN: 1468-3148
BackgroundMany people with intellectual disabilities display high levels of anger, and cognitive‐behavioural anger management interventions are used routinely. However, for these methods to be used optimally, a better understanding is needed of different forms of anger assessment. The aim of this study was to investigate the relationship of a range of measures to self‐ and carer reports of anger expression, including instruments used to assess mental health and challenging behaviour.MethodAdults with intellectual disabilities, who had been identified as having problems with anger control, their key‐workers and home carers all rated the service users' trait anger, using parallel versions of the same instrument (the Provocation Inventory). In addition, service users completed a battery of mental health assessments (the Glasgow Depression Scale, Glasgow Anxiety Scale and Rosenberg Self‐Esteem Scale), and both groups of carers completed a battery of challenging behaviour measures (the Hyperactivity and Irritability domains of the Aberrant Behavior Checklist and the Modified Overt Anger Scale).ResultsParticipants had high levels of mental health problems (depression: 34%; anxiety: 73%) and severe challenging behaviour (26%). Hierarchical linear regression analysis was used to explore the extent to which anger ratings by the three groups of respondents were predicted by demographic factors, mental health measures and challenging behaviour measures. Older service users rated themselves as less angry and were also rated as less angry by home carers, but not by key‐workers. More intellectually able service users were rated as more angry by both sets of carers, but not by the service users themselves. Significantly, mental health status (but not challenging behaviour) predicted service users' self‐ratings of anger, whereas challenging behaviour (but not mental health status) predicted carers' ratings of service users' anger.ConclusionsService users and their carers appear to use different information when rating the service users' anger. Service users' self‐ratings reflect their internal emotional state and mental health, as reflected by their ratings of anxiety and depression, whereas staff rate service users' anger on the basis of overt behaviours, as measured by challenging behaviour scales.
Funding This project has been funded by the Welsh Government through Health and Care Research Wales (project number 1068). Acknowledgments We acknowledge the support and input from Sarah Jones, our parent representative for the study. We are also grateful to the DUTY and EURICA participants for their agreement for continued use of their data for this study. The Centre for Trials Research receives funding from Health and Care Research Wales and Cancer Research UK. Wales Centre for Primary and Emergency Care Research (PRIME Centre Wales) receives funding from Health and Care Research Wales. The authors are supported by the Farr Institute CIPHER, funded by Arthritis Research UK, the British Heart Foundation, Cancer Research UK, the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Medical Research Council, the National Institute of Health Research, the National Institute for Social Care and Health Research (Welsh Assembly Government), the Chief Scientist Office (Scottish Government Health Directorates), and the Wellcome Trust (MRC grant number MR/K006525/1) and the National Centre for Population Health and Wellbeing Research (NCPHWR). Ethics approval Ethics approval of the study has been given by the Research Ethics Committee for Wales (16/WA/0166) and the transfer and use of identifiable data has been approved by the Health Research Authority's (HRA) Confidentiality Advisory Group (CAG) (16/CAG/0114). ; Peer reviewed ; Publisher PDF
BASE
BACKGROUND: It is estimated that around 160,000 households in Britain experience homelessness each year, although no definitive statistics exist. Between March and September 2020, as part of the initial 'Everyone In' government response to COVID-19 in England, 10,566 people were living in emergency accommodation and nearly 18,911 people had been moved into settled accommodation. However, some forms of temporary accommodation may not be suitable as shared facilities make it impossible for people to adhere to government guidelines to reduce the spread of COVID-19. METHODS: This is parallel group, pilot randomised controlled trial. The target is to recruit three local authorities, each of which will recruit 50 participants (thus a total of approximately 150 participants). Individuals are eligible if they are aged 18 and over, in a single-person homeless household, temporarily accommodated by the LA with recourse to public funds. Participants will be randomised to receive settled accommodation (intervention group) or temporary accommodation (control group). The intervention group includes settled housing such as Private Rented Sector (low and medium support), Social Housing (low and medium support), and Housing First (High support). The control group will maintain treatment as usual. The follow-up period will last 6 months. The primary outcome is to assess the feasibility of recruitment, retention, and acceptability of trial processes against progression criteria laid out in a traffic light system (green: all criteria are met, the trial should progress as designed in this pilot; amber: the majority of criteria are met and with adaptations to methods all criteria could be met; red: the minority of criteria are met and the pilot RCT should not proceed). Secondary outcomes include assessment of completeness of data collection at 3 and 6 months and percentage of participants consenting to data linkage, as well as a process evaluation and economic evaluation. DISCUSSION: This trial will address feasibility questions ...
BASE
In: International journal of population data science: (IJPDS), Band 7, Heft 2
ISSN: 2399-4908
Background
Stillbirths are reported as one of the most neglected tragedies in global health, with around 2m stillbirths occurring annually and the majority occurring in low- and middle income countries (LMICs). Many antenatal stillbirths are due to preventable conditions such as maternal infections and non-communicable diseases. Almost half of all stillbirths occur during the intrapartum period, with many linked to obstetric complications. Known risk factors for stillbirths overall include young or advancing maternal age, fetal infection, maternal hypertensive conditions, perinatal asphyxia, history of previous stillbirth, obstetric complications, intrauterine growth restriction and abruptio placenta/placenta praevia. Common non-clinical risk factors include lack of education, socioeconomic deprivation and substandard antenatal care.
Methods
A single site prospective observational study conducted over three-months was conducted in a tertiary referral hospital in Kano, Nigeria. Eligible participants were mothers presenting at the site in labour and their babies.
Demographic and clinical data were collected by paper-based questionnaires. Data were collected on living environment, health and medical history, pregnancy history and pregnancy/birth factors. Each mother answered pre-delivery questions, with potential follow-on questions dependent on birth outcome. Further data points were collected from clinical observations. Photographs were taken of stillborn babies to support data collected and to aid the UK team on classifying degrees of maceration in an attempt to identify antenatal and intrapartum fetal death.
Findings
Higher odds of stillbirth were associated with low levels of education, a further distance to travel from home to the hospital, living in a shack, maternal hypertension and having had a previous stillbirth after adjusting for all sociodemographic and health features. Higher odds of intrapartum stillbirth included; shoulder presentation, compound presentation and breech presentation compared to cephalic presentation. Other birth related factors associated with higher odds of stillbirth included reported birthing complications, duration of labour being >=18 hours), antepartum haemorrhage, prolonged/obstructed labour, vaginal breech delivery, emergency Caesarean-section delivery, and signs of trauma to the neonate.
ConclusionsIdentified risk factors associated with stillbirths are relatively amenable to intervention and a lot of work has been conducted globally, so the development of intervention with sufficient funding should be a relatively rapid process.
For collaborations please contact: Email: miltonrl1@cardiff.ac.uk