12 research outputs found

    Self-directed self-management interventions to prevent or address distress in young people with long-term physical conditions: a rapid review.

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    Background: Comorbid distress in adolescents and young adults with physical long‐ term conditions (LTCs) is common but can be difficult to identify and manage. Self‐ directed self‐management interventions to reduce distress and improve wellbeing may be beneficial. It is unknown, however, which intervention characteristics are successful in supporting young people. This rapid review aimed to identify characteristics of self‐directed self‐management interventions that aimed, in whole or part, to address distress, wellbeing or self‐efficacy in this population. Methods: A systematic search was conducted for relevant controlled studies in six databases. Data on study settings, population, intervention characteristics, outcome measures, process measures and summary effects were extracted. The risk of bias was assessed using the Cochrane Risk of Bias tool v1, and the strength of evidence was rated (informed by Grading of Recommendations, Assessment, Development and Evaluations). Patient and public involvement members supported the review process, including interpretation of results. The rapid review was registered with PROSPERO (ID: CRD42021285867). Results: Fourteen studies were included, all of which were randomised trials. Heterogeneity was identified in the health conditions targeted; type of intervention; outcome measures; duration of intervention and follow‐up. Three had distress, wellbeing or self‐efficacy as their primary outcome. Four modes of delivery were identified across interventions—websites, smartphone applications, text messages and workbooks; and within these, 38 individual components. Six interventions had a significant benefit in mental health, wellbeing or self‐efficacy; however, intervention characteristics were similar for beneficial and non‐beneficial interventions. Conclusions: There is a paucity of interventions directly targeting distress and wellbeing in young people with physical LTCs. In those identified, the heterogeneity of interventions and study design makes it difficult to identify which characteristics result in positive outcomes. We propose the need for high‐quality, evidence‐based self‐management interventions for this population; including (1) more detailed reporting of intervention design, content and delivery; (2) robust process evaluation; (3) a core outcome set for measuring mental health and wellbeing for self‐ management interventions and (4) consistency in follow up periods. Public Contribution: Seven young people with an LTC were involved throughout the rapid review, from the development of the review protocol where they informed the focus and aims, with a central role in the interpretation of findings.peer-reviewe

    Healthcare professionals’ priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique

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    Young people with a stoma due to inflammatory bowel disease (IBD) commonly experience distress; however, this is not always well managed in clinical settings. More effective support may/is likely to reduce the possibility of individuals experiencing sustained distress, which may engender depression or anxiety. This study aimed to gain consensus among a multidisciplinary group of healthcare professionals (HCPs) on priorities for training in the identification and management of distress in this population. One of the authors is a young person with a stoma. Design Participants were recruited through Twitter (X) and the researchers’ clinical/research contacts. Two consensus group meetings were conducted using Nominal Group Technique, involving participants generating, discussing and rating on a Likert scale, topics for inclusion in an HCP training package. Setting Online video conferencing. Participants were located across England, with one based in the USA. Participants Nineteen HCPs participated: three general practitioners, three stoma nurses, two IBD nurses, nine clinical psychologists and two gastroenterologists. Results Twenty-five topics were generated by participants; 19 reached consensus of ≄80%, that is, a mean of ≄5.6 on a 7-point Likert scale. These included: recognising and validating different levels of, and variation in, distress; tackling stigma and normalising having a stoma; everyday practicalities of stoma management, including food and sleep; opening and holding conversations about stoma-related distress; considering the impact of different cultural beliefs on adaptation after stoma surgery; training in simple techniques for gauging the patient’s distress during clinical encounters; having conversations about body image; and myth-busting common fears, such as odour. Conclusions This study is the first to identify HCP training priorities for managing stoma-related distress in young people. Consensus was reached for 19 topics, reflecting the varied needs of young people with a stoma. Findings will inform development of a training package for HCPs treating young people with IBD and a stoma.peer-reviewe

    Healthcare professionals’ priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique

    Get PDF
    Young people with a stoma due to inflammatory bowel disease (IBD) commonly experience distress; however, this is not always well managed in clinical settings. More effective support may/is likely to reduce the possibility of individuals experiencing sustained distress, which may engender depression or anxiety. This study aimed to gain consensus among a multidisciplinary group of healthcare professionals (HCPs) on priorities for training in the identification and management of distress in this population. One of the authors is a young person with a stoma. Design Participants were recruited through Twitter (X) and the researchers’ clinical/research contacts. Two consensus group meetings were conducted using Nominal Group Technique, involving participants generating, discussing and rating on a Likert scale, topics for inclusion in an HCP training package. Setting Online video conferencing. Participants were located across England, with one based in the USA. Participants Nineteen HCPs participated: three general practitioners, three stoma nurses, two IBD nurses, nine clinical psychologists and two gastroenterologists. Results Twenty-five topics were generated by participants; 19 reached consensus of ≄80%, that is, a mean of ≄5.6 on a 7-point Likert scale. These included: recognising and validating different levels of, and variation in, distress; tackling stigma and normalising having a stoma; everyday practicalities of stoma management, including food and sleep; opening and holding conversations about stoma-related distress; considering the impact of different cultural beliefs on adaptation after stoma surgery; training in simple techniques for gauging the patient’s distress during clinical encounters; having conversations about body image; and myth-busting common fears, such as odour. Conclusions This study is the first to identify HCP training priorities for managing stoma-related distress in young people. Consensus was reached for 19 topics, reflecting the varied needs of young people with a stoma. Findings will inform development of a training package for HCPs treating young people with IBD and a stoma.peer-reviewe

    Abstracts from the NIHR INVOLVE Conference 2017

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    Self‐directed self‐management interventions to prevent or address distress in young people with long‐term physical conditions: A rapid review

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    Comorbid distress in adolescents and young adults with physical long-term conditions (LTCs) is common but can be difficult to identify and manage. Self-directed self-management interventions to reduce distress and improve wellbeing may be beneficial. It is unknown, however, which intervention characteristics are successful in supporting young people. This rapid review aimed to identify characteristics of self-directed self-management interventions that aimed, in whole or part, to address distress, wellbeing or self-efficacy in this population. A systematic search was conducted for relevant controlled studies in six databases. Data on study setting, population, intervention characteristics, outcome measures, process measures and summary effects were extracted. Risk of bias was assessed using Cochrane Risk of Bias tool v1, and strength of evidence rated (informed by GRADE). PPIE members supported the review process including interpretation of results. The rapid review was registered with PROSPERO (ID: CRD42021285867) RESULTS: Fourteen studies were included, all of which were randomised trials. Heterogeneity was identified in health conditions targeted; type of intervention; outcome measures; duration of intervention and follow-up. Three had distress, wellbeing or self-efficacy as their primary outcome. Four modes of delivery were identified across interventions ─ websites, smartphone applications, text messages and workbooks; and within these, 38 individual components. Six interventions had a significant benefit in mental health, wellbeing or self-efficacy; however, intervention characteristics were similar for beneficial and non-beneficial interventions. There is a paucity of interventions directly targeting distress and wellbeing in young people with physical LCTs. In those identified, heterogeneity of interventions and study design makes it difficult to identify which characteristics result in positive outcomes. We propose the need for high quality, evidence-based self-management interventions for this population; including 1) more detailed reporting of intervention design, content and delivery; 2) robust process evaluation; 3) a core outcome set for measuring mental health and wellbeing for self-management interventions; and 4) consistency in follow up periods. Seven young people with a LTC were involved throughout the rapid review, from the development of the review protocol where they informed the focus and aims, with a central role in the interpretation of findings. This article is protected by copyright. All rights reserved. [Abstract copyright: This article is protected by copyright. All rights reserved.

    A randomized, double-blind, placebo-controlled study of latrepirdine in patients with mild to moderate huntington disease: HORIZON investigators of the huntington study group and european huntington's disease network

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    Students' participation in collaborative research should be recognised

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    Letter to the editor
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