scholarly journals Perceptions of effective self-care support for children and young people with long-term conditions

2012 ◽  
Vol 21 (13-14) ◽  
pp. 1974-1987 ◽  
Author(s):  
Susan Kirk ◽  
Susan Beatty ◽  
Peter Callery ◽  
Linda Milnes ◽  
Steven Pryjmachuk
2018 ◽  
Vol 6 (3) ◽  
pp. 1-192 ◽  
Author(s):  
Penny Bee ◽  
Rebecca Pedley ◽  
Amber Rithalia ◽  
Gerry Richardson ◽  
Steven Pryjmachuk ◽  
...  

BackgroundSelf-care support (e.g. education, training, peer/professional support) is intended to enhance the self-care capacities of children and young people, while simultaneously reducing the financial burden facing health-care systems.ObjectivesTo determine which models of self-care support for long-term conditions (LTCs) are associated with significant reductions in health utilisation and costs without compromising outcomes for children and young people.DesignSystematic review with meta-analysis.PopulationChildren and young people aged 0–18 years with a long-term physical or mental health condition (e.g. asthma, depression).InterventionSelf-care support in health, social care, educational or community settings.ComparatorUsual care.OutcomesGeneric/health-related quality of life (QoL)/subjective health symptoms and health service utilisation/costs.DesignRandomised/non-randomised trials, controlled before-and-after studies, and interrupted time series designs.Data sourcesMEDLINE, EMBASE, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, ISI Web of Science, NHS Economic Evaluation Database, The Cochrane Library, Health Technology Assessment database, Paediatric Economic Database Evaluation, IDEAS, reference scanning, targeted author searches and forward citation searching. All databases were searched from inception to March 2015.MethodsWe conducted meta-analyses, simultaneously plotting QoL and health utilisation effects. We conducted subgroup analyses for evidence quality, age, LTC and intervention (setting, target, delivery format, intensity).ResultsNinety-seven studies reporting 114 interventions were included. Thirty-seven studies reported adequate allocation concealment. Fourteen were UK studies. The vast majority of included studies recruited children and young people with asthma (n = 66, 68%). Four per cent of studies evaluated ‘pure’ self-care support (delivered through health technology without additional contact), 23% evaluated facilitated self-care support (≤ 2 hours’/four sessions’ contact), 65% were intensively facilitated (≥ 2 hours’/four sessions’ contact) and 8% were case management (≥ 2 hours’ support with multidisciplinary input). Self-care support was associated with statistically significant, minimal benefits for QoL [effect size (ES) –0.17, 95% confidence interval (CI) –0.23 to –0.11], but lacked clear benefit for hospital admissions (ES –0.05, 95% CI –0.12 to 0.03). This finding endured across intervention intensities and LTCs. Statistically significant, minimal reductions in emergency use were observed (ES –0.11, 95% CI –0.17 to –0.04). The total cost analysis was limited by the small number of data. Subgroup analyses revealed statistically significant, minimal reductions in emergency use for children aged ≤ 13 years (ES –0.10, 95% CI –0.17 to –0.04), children and young people with asthma (ES –0.12, 95% CI –0.18 to –0.06) and children and young people receiving ≥ 2 hours per four sessions of support (ES –0.10, 95% CI –0.17 to –0.03). Preliminary evidence suggested that interventions that include the child or young person, and deliver some content individually, may optimise QoL effects. Face-to-face delivery may help to maximise emergency department effects. Caution is required in interpreting these findings.LimitationsIdentification of optimal models of self-care support is challenged by the size and nature of evidence available. The emphasis on meta-analysis meant that a minority of studies with incomplete but potentially relevant data were excluded.ConclusionsSelf-care support is associated with positive but minimal effects on children and young people’s QoL, and minimal, but potentially important, reductions in emergency use. On current evidence, we cannot reliably conclude that self-care support significantly reduces health-care costs.Future workResearch is needed to explore the short- and longer-term effects of self-care support across a wider range of LTCs.Study registrationThis study is registered as PROSPERO CRD42014015452.FundingThe National Institute for Health Research Health Services and Delivery Research programme.


Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Sophie D. Bennett ◽  
◽  
J. Helen Cross ◽  
Anna E. Coughtrey ◽  
Isobel Heyman ◽  
...  

Abstract Background Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. Methods In total, 334 participants aged 3–18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Children’s Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. Discussion This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. Trial registration ISRCTN ISRCTN57823197. Registered on 25 February 2019.


2020 ◽  
Vol 18 (1) ◽  
pp. 1720
Author(s):  
Zahra Alsairafi ◽  
Julie Mason ◽  
Natasha Davies ◽  
Molly Dennis ◽  
Gabrielle Pilgrim ◽  
...  

2015 ◽  
Vol 100 (9) ◽  
pp. 826-833 ◽  
Author(s):  
Katherine Curtis-Tyler ◽  
Lisa Arai ◽  
Terence Stephenson ◽  
Helen Roberts

BackgroundThere is mounting evidence that experience of care is a crucial part of the pathway for successful management of long-term conditions.Design and objectivesTo carry out (1) a systematic mapping of qualitative evidence to inform selection of studies for the second stage of the review; and (2) a narrative synthesis addressing the question, What makes for a ‘good’ or a ‘bad’ paediatric diabetes service from the viewpoint of children, young people, carers and clinicians?ResultsThe initial mapping identified 38 papers. From these, the findings of 20 diabetes-focused papers on the views on care of ≥650 children, parents and clinicians were synthesised. Only five studies included children under 11 years. Children and young people across all age groups valued positive, non-judgemental and relationship-based care that engaged with their social, as well as physical, health. Parents valued provision responsive to the circumstances of family life and coordinated across services. Clinicians wanting to engage with families beyond a child's immediate physical health described finding this hard to achieve in practice.LimitationsSocioeconomic status and ethnicity were poorly reported in the included studies.ConclusionsIn dealing with diabetes, and engaging with social health in a way valued by children, parents and clinicians, not only structural change, such as more time for consultation, but new skills for reworking relations in the consultation may be required.


2020 ◽  
Vol 105 (11) ◽  
pp. 1093-1104
Author(s):  
Sarah Blower ◽  
Veronica Swallow ◽  
Camila Maturana ◽  
Simon Stones ◽  
Robert Phillips ◽  
...  

BackgroundThe use of patient-facing health technologies to manage long-term conditions is increasing; however, children and young people may have particular concerns or needs before deciding to use different health technologies.AimsTo identify children and young people’s reported concerns or needs in relation to using health technologies to self-manage long-term conditions.MethodsA scoping review was conducted. We searched MEDLINE, PsycINFO and CINAHL in February 2019. Searches were limited to papers published between January 2008 and February 2019. We included any health technology used to manage long-term conditions. A thematic synthesis of the data from the included studies was undertaken. We engaged children with long-term conditions (and parents) to support review design, interpretation of findings and development of recommendations.ResultsThirty-eight journal articles were included, describing concerns or needs expressed by n=970 children and/or young people aged 5–18 years. Most included studies were undertaken in high-income countries with children aged 11 years and older. Studies examined concerns with mobile applications (n=14), internet (n=9), social media (n=3), interactive online treatment programmes (n=3), telehealth (n=1), devices (n=3) or a combination (n=5). Children and young people’s main concerns were labelling and identity; accessibility; privacy and reliability; and trustworthiness of information.DiscussionThis review highlights important concerns that children and young people may have before using technology to self-manage their long-term condition. In future, research should involve children and young people throughout the development of technology, from identifying their unmet needs through to design and evaluation of interventions.


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