26 research outputs found

    Managing the morass. Lessons learned from establishing a data linkage model for long-term follow up of a trial cohort using routine health and education data

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    The Building Blocks trial [ISRCTN 23019866] assessed the short-term impact of an intensive programme of antenatal and postnatal visiting by specially trained nurses to support young pregnant women. This follow-on study, BB: 2-6, will assess the programmes' impact on longer-term benefits for mothers and children, through the linkage of routinely collected data, with a particular emphasis on the programmes' impact upon child maltreatment. Follow up will be by linked anonymous data abstraction from the Health and Social Care Information Centre (HSCIC), Office for National Statistics (ONS) and Department for Education, National Pupil Database (NPD). These information centres (ICs) will match participants to the information held in their databases, and send to a third party safe haven. Re-consenting of all mothers would have resulted in a drastic loss of participants therefore section 251 support was sought to allow the transfer of identifiers to ICs for matching. This support required participants to opt-out rather than consent in. This project will complete in 2018. What has been achieved thus far is the establishment of a regulatory compliant model of linking health, social care and education data to clinical data. This model of linkage offers the possibility for long term evaluation of trials, at lower cost, and with the potential to extend to other sources of routine data. This presentation will review the approach established in this study, reflect on the dis/advantages of the approach, summarise the conditions of s251 support, information governance compliance, IC requirements and finally the challenges (and solutions) faced thus far

    Do home visiting programmes improve children's language development? A systematic review

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    Objectives This review examines home visiting programmes that specifically provide home based support to vulnerable, socially disadvantaged women who are either pregnant or have recently become a new parent. Home visiting programmes often report multiple outcomes. The purpose of this review is to systematically summarise how effective home visiting programmes are at improving young children's language development. Data sources A comprehensive search of four online databases (Embase, Emcare, Psycinfo and Medline) between 1990 and 2020 was conducted, as well as a hand search of the references of relevant studies. Review method Studies were screened with N = 11 meeting the inclusion/exclusion criteria. The risk of bias of each study was assessed. To enable comparisons between home visiting programmes, relevant data was extracted using an adapted version of the Cochrane Public Health Group Data Extraction and Assessment Template. Results Most of the home visiting programmes had been established in America. Six of the eleven studies reported positive language outcomes for children. Where statistical data was reported, the magnitude of the difference between the intervention and control groups represented small effect sizes. Nine different language measures were used, reporting on varying domains of language development rendering comparisons across programmes difficult. Most studies failed to report the duration of home visits, though studies which started prenatally showed the most promise in improving children's language development. Conclusion Home visiting programmes targeted at socially disadvantaged women and their children have the potential to positively influence the language development of the child. This review highlights that not all home visiting programmes measure the impact that the programme has on children's language development, and not all home visiting programmes achieve positive language outcomes. Initiating visits prenatally may help towards the improvement of children's language development. Future evaluations of home visiting programmes should explore this finding further, consider the language assessment tools selected, and improve on the reporting of their language results

    Getting animated about routine data: co-producing a video and toolkit with young families

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    Introduction While public engagement activity in healthcare may include a focus on uses of patient data, use of social care/ education data may be relatively overlooked. The public may be less aware about how their social care data may be used. Some concepts such as benefits and risks may also differ. Objectives and Approach Our objective is to co-produce with members of the public a package of materials that researchers may then use to promote public understanding of and engagement in research that uses routine data from health and social care settings. We are running workshops with two groups of young families (teenage mothers, some of whom have received specialist home-visiting support) to explore key concepts and messages about routine data use, including sensitive data such as maltreatment and regulatory child protection interventions. The workshop includes completing a story board for an animated video. This will be co-produced by the same young people. Results Our recent work with young families has shown a preference for visual based methods over text-based approaches to explain routine data linkage. This represents a key opportunity for innovation. We have explored how members of the public understand and make sense of routine data from various settings (health/social care) and its use in research. Working with a professional animator, the co-production of a prototype animation aims to engage members of the public about the nature, benefits and safeguards of using routine public records in health and social care research. The presentation will summarise the method of co-production, review the prototype animation and associated materials for researchers (ā€˜toolkitā€™). Finally, we will recap key messages identified from the workshops that underpin the animation and other dissemination plans. Conclusion/Implications Our existing understanding of public views (e.g. from consumer panels) may not represent well perspectives from population groups, such as teenage parents. Working with young families who may otherwise rarely engage in such work provides their unique perspectives, adding richness to our understanding of public views on routine data usage

    Implementation of the Family Nurse Partnership programme in England: experiences of key health professionals explored through trial parallel process evaluation

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    Background The Family Nurse Partnership (FNP) programme was introduced to support young first-time mothers. A randomised trial found FNP added little short-term benefit compared to usual care. The study included a comprehensive parallel process evaluation, including focus groups, conducted to aid understanding of the introduction of the programme into a new service and social context. The aim of the focus groups was to investigate views of key health professionals towards the integration and delivery of FNP programme in England. Methods Focus groups were conducted separately with Family Nurses, Health Visitors and Midwives at trial sites during 2011ā€“2012. Transcripts from audio-recordings were analysed thematically. Results A total of 122 professionals participated in one of 19 focus groups. Family Nurses were confident in the effectiveness of FNP, although they experienced practical difficulties meeting programme fidelity targets and considered that programme goals did not sufficiently reflect client or community priorities. Health Visitors and Midwives regarded FNP as well-resourced and beneficial to clients, describing their own services as undervalued and struggling. They wished to work closely with Family Nurses, but felt excluded from doing so by practical barriers and programme protection. Conclusion FNP was described as well-resourced and delivered by highly motivated and well supported Family Nurses. FNP eligibility, content and outcomes conflicted with individual client and community priorities. These factors may have restricted the potential effectiveness of a programme developed and previously tested in a different social milieu. Building Blocks ISRCTN23019866 Registered 20/04/2009

    Assessing predictors of respiratory tract infections in infants born to teenage mothers; secondary analysis of the Building Blocks trial data

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    Background Respiratory tract infections (RTIs) are estimated to account for 60% of infantsā€™ primary care visits. There is limited research into risk factors for infant RTIs in those born to teenage mothers. Aims To identify risk factors for primary and secondary care RTI attendances, in infants of teenage mothers, and to identify risk factors associated with high primary care RTI consultations. Method Secondary analysis of a data set from the Building Blocks trial of special home visiting support in England containing 1510 infants born to teenage mothers recruited to the study. Maternally reported and routinely collected data were examined. Multivariable logistic regression models were performed to determine independent predictors. Primary care data analysis also focused on infant risk factors for RTI consultation. Results No independently predictive risk factors for infant RTI were identified in primary care. Lower maternal antenatal attendances (odds ratio = 0.96, 95% confidence interval = 0.92ā€“0.99), infants born in autumn (vs. spring; 0.54, 0.36ā€“0.80) and neonatal unit (NNU) admissions (0.51, 0.30ā€“0.89) had increased odds of attending accidents and emergencies with an RTI. Male infants (1.52, 1.03ā€“2.25), NNU admissions (3.21, 1.98ā€“5.22) and birth season had increased odds of RTI-associated hospital admissions. High infant RTI primary care consulters were more likely to have an RTI-associated hospital admission (2.11, 1.17ā€“3.81) and less likely to have breastfed (0.55, 0.38ā€“0.78). Conclusion Risk factors previously found to increase the risk of an RTI infant admission in the broader population have been identified here. This study is one of the first to identify modifiable risk factors of high primary care RTI consulters

    The impact of a specialist home-visiting intervention on the language outcomes of young mothers and their children: a pragmatic randomised controlled trial

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    Background: Young mothers are more likely to provide a suboptimal early language environment for their children who in turn show impairments in their language development, yet few studies have used observational methods to assess the effectiveness of home-visiting programmes in improving the language outcomes of young mothers and their children. The Family Nurse Partnership (FNP) is a licensed home-visiting intervention developed in the USA and introduced into practice in England. The intervention involves up to 64 structured home visits from early pregnancy until the child's second birthday by specially recruited and trained Family Nurses. We assessed the effectiveness of FNP in improving the language outcomes of first-time teenage mothers and their infants. Method: We conducted a pragmatic, non-blinded, randomised controlled trial to test whether the FNP programme improved mothersā€™ and childrenā€™s language production at 24 months postpartum. Eligible participants were nulliparous, aged 19 years or younger, and were recruited at less than 25 weeksā€™ gestation from community midwifery settings (Country). Pregnant young mothers were randomly assigned to FNP plus usual care (n = 243) or usual care alone (n = 233). At 24 months postpartum, motherā€“child dyads were observed during a standardised free-play task with their first-born child and features of their language production was coded. Data was analysed using multi-level modelling; linear or poisson/negative binomial regression models were used as appropriate. Results: A small effect of FNP on mothersā€™ productive language was detected, where mothers in the FNP group demonstrated higher mean length of utterances than mothers who received usual care alone, mean difference (adjusted by minimisation variables and by site, linear regression) = 0.10, p < .05, 95% CI (0.004ā€“0.20), d = .18. No differences were detected between groups regarding other characteristics of maternal language or childrenā€™s language outcomes. Conclusion: This observational study conducted within the context of a randomised-controlled trial suggests that the FNP home-visiting programme may have a small, but potentially important impact on young mothersā€™ speech to their toddlers. Exploratory analyses identified family environment, maternal, and child related predictors of the language outcomes of young mothers and their offspring. Trial registration This trial is registered with ISRCTN, number ISRCTN23019866, 20/04/2009

    Physical activity and exercise interventions for people with rare neurological disorders : a scoping review of systematic reviews

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    Abstract Background: People living with rare neurological conditions (RNCs) often face common physical, cognitive and psychological challenges that lead to reduced physical activity and associated deconditioning. Physical activity interventions are routinely utilised to address disease specific limitations with the intention of promoting participation in people with RNCs. This scoping review aimed to synthesise the body of evidence for such interventions as they are applied across a wide range of RNCs. Methods: We undertook a scoping review of systematic reviews of any type of physical activity and exercise interventions for adults with neuromuscular diseases, motor neurone disease, Huntingtonā€™s disease, progressive supranuclear palsy, multiple system atrophy, inherited ataxias and hereditary spastic paraplegia. The reviews were included if they reported at least one outcome that aimed to increase physical activity level at either the body structure/function, activity and/or participation levels. Results: Sixty-two articles were full-text screened of which 27 were included. Most studies involved interventions in people with neuromuscular diseases. No reviews of interventions in hereditary spastic paraparesis were identified. The majority of reviews included studies of structured exercise using outcome measures at the level of body function and functional activity. Interventions were grouped as: i) combined interventions; ii) muscle strength training; iii) respiratory training; iv) aerobic training. Frequency, intensity, time and type of structured exercise utilised varied considerably across studies. Most studies were methodologically limited by small sample sizes, variation in exercise dose and training duration.Conclusions: To date, primary attention has been given to structured exercise interventions, which have demonstrated to have a low to uncertain level of evidence. Novel approaches to implementing common interventions and modalities are needed to increase accessibility and engagement in physical activity irrespective of disease type. Further exploration is warranted to achieve consensus on outcome measures that reflect areas of importance and relevance to people with RNCs
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