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Article ; Online: Implementing brief and low-intensity psychological interventions for children and young people with internalizing disorders: a rapid realist review.

Roach, Anna / Cullinan, Sophie / Shafran, Roz / Heyman, Isobel / Bennett, Sophie

2023 Volume 145, Issue 1, Page(s) 120–131

Abstract: Introduction: Many children fail to receive the mental health treatments they need, despite strong evidence demonstrating efficacy of brief and low-intensity psychological interventions. This review identifies the barriers and facilitators to their ... ...

Abstract	Introduction: Many children fail to receive the mental health treatments they need, despite strong evidence demonstrating efficacy of brief and low-intensity psychological interventions. This review identifies the barriers and facilitators to their implementation. Sources of data: PsycInfo, EMBASE and Medline were searched and a systematic approach to data extraction using Normalization Process Theory highlighted key mechanisms and contextual factors. Areas of agreement: Ten interventions from 9 papers, including 371 young people, were included. Studies identified organizational demands, lack of implementation strategy and stigma as barriers to implementation, and clear training and plans for implementation as facilitators. Areas of controversy: No standardized implementation outcomes were used across papers so meta-analysis was not possible. Growing points: Barriers and facilitators have been clearly identified across different settings. Areas timely for developing research: Longitudinal studies can identify methods and processes for enhancing long-term implementation and considers ways to monitor and evaluate uptake into routine practice.
MeSH term(s)	Adolescent ; Child ; Humans ; Psychosocial Intervention ; Anxiety/therapy ; Depression/therapy ; Mental Health
Language	English
Publishing date	2023-01-02
Publishing country	England
Document type	Review ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	213294-1
ISSN	1471-8391 ; 0007-1420
ISSN (online)	1471-8391
ISSN	0007-1420
DOI	10.1093/bmb/ldad001
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Article ; Online: Reflective insights from developing a palliative care children and young people's advisory group.

Roach, Anna / Braybrook, Debbie / Marshall, Steve

Palliative medicine

2021 Volume 35, Issue 3, Page(s) 621–624

Abstract: Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from ...

Abstract	Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People's Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school 'Health and Social Research Methods Club' for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People's Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.
MeSH term(s)	Adolescent ; Child ; Hospice and Palliative Care Nursing ; Humans ; Palliative Care ; Research Design
Language	English
Publishing date	2021-01-12
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/0269216320976035
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Article ; Online: Impaired malin expression and interaction with partner proteins in Lafora disease.

Skurat, Alexander V / Segvich, Dyann M / Contreras, Christopher J / Hu, Yueh-Chiang / Hurley, Thomas D / DePaoli-Roach, Anna A / Roach, Peter J

The Journal of biological chemistry

2024 Volume 300, Issue 5, Page(s) 107271

Abstract: Lafora disease (LD) is an autosomal recessive myoclonus epilepsy with onset in the teenage years leading to death within a decade of onset. LD is characterized by the overaccumulation of hyperphosphorylated, poorly branched, insoluble, glycogen-like ... ...

Abstract	Lafora disease (LD) is an autosomal recessive myoclonus epilepsy with onset in the teenage years leading to death within a decade of onset. LD is characterized by the overaccumulation of hyperphosphorylated, poorly branched, insoluble, glycogen-like polymers called Lafora bodies. The disease is caused by mutations in either EPM2A, encoding laforin, a dual specificity phosphatase that dephosphorylates glycogen, or EMP2B, encoding malin, an E3-ubiquitin ligase. While glycogen is a widely accepted laforin substrate, substrates for malin have been difficult to identify partly due to the lack of malin antibodies able to detect malin in vivo. Here we describe a mouse model in which the malin gene is modified at the C-terminus to contain the c-myc tag sequence, making an expression of malin-myc readily detectable. Mass spectrometry analyses of immunoprecipitates using c-myc tag antibodies demonstrate that malin interacts with laforin and several glycogen-metabolizing enzymes. To investigate the role of laforin in these interactions we analyzed two additional mouse models: malin-myc/laforin knockout and malin-myc/LaforinCS, where laforin was either absent or the catalytic Cys was genomically mutated to Ser, respectively. The interaction of malin with partner proteins requires laforin but is not dependent on its catalytic activity or the presence of glycogen. Overall, the results demonstrate that laforin and malin form a complex in vivo, which stabilizes malin and enhances interaction with partner proteins to facilitate normal glycogen metabolism. They also provide insights into the development of LD and the rescue of the disease by the catalytically inactive phosphatase.
Language	English
Publishing date	2024-04-07
Publishing country	United States
Document type	Journal Article
ZDB-ID	2997-x
ISSN	1083-351X ; 0021-9258
ISSN (online)	1083-351X
ISSN	0021-9258
DOI	10.1016/j.jbc.2024.107271
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Article: The plant endoplasmic reticulum UPRome: A repository and pathway browser for genes involved in signaling networks linked to the endoplasmic reticulum

Herath, Venura / Connolly, Kaylee / Roach, Anna / Ausekar, Ashish / Persky, Tracy / Verchot, Jeanmarie

Plant direct. 2022 July, v. 6, no. 7

2022

Abstract: The endoplasmic reticulum (ER) houses sensors that respond to environmental stress and underly plants' adaptative responses. These sensors transduce signals that lead to changes in nuclear gene expression. The ER to nuclear signaling pathways are ... ...

Abstract	The endoplasmic reticulum (ER) houses sensors that respond to environmental stress and underly plants' adaptative responses. These sensors transduce signals that lead to changes in nuclear gene expression. The ER to nuclear signaling pathways are primarily attributed to the unfolded protein response (UPR) and are also integrated with a wide range of development, hormone, immune, and stress signaling pathways. Understanding the role of the UPR in signaling network mechanisms that associate with particular phenotypes is crucially important. While UPR‐associated genes are the subject of ongoing investigations in a few model plant systems, most remain poorly annotated, hindering the identification of candidates across plant species. This open‐source curated database provides a centralized resource of peer reviewed knowledge of ER to nuclear signaling pathways for the plant community. We provide a UPRome interactive viewer for users to navigate through the pathways and to access annotated information. The plant ER UPRome website is located at http://uprome.tamu.edu. We welcome contributions from the researchers studying the ER UPR to incorporate additional genes into the database through the “contact us” page.
Keywords	Internet ; databases ; endoplasmic reticulum ; gene expression ; plant communities ; unfolded protein response
Language	English
Dates of publication	2022-07
Publishing place	John Wiley & Sons, Ltd
Document type	Article
Note	JOURNAL ARTICLE
ISSN	2475-4455
DOI	10.1002/pld3.431
Database	NAL-Catalogue (AGRICOLA)

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Article: "You can do it yourself and you can do it at your convenience": internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic.

Reilly, Charles C / Bristowe, Katherine / Roach, Anna / Maddocks, Matthew / Higginson, Irene J

ERJ open research

2022 Volume 8, Issue 1

Abstract: Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related ... ...

Abstract	Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management. The aim of this study was to explore accessibility and willingness of patients with chronic breathlessness to use an internet-based breathlessness self-management intervention (SELF-BREATHE). Methods: Semi-structured telephone interviews were conducted with adults living with advanced malignant and non-malignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results: 25 patients (COPD: n=13; lung cancer: n=8; interstitial lung disease (ILD): n=3; bronchiectasis: n=1) were interviewed: 17 male, median (range) age 70 (47-86) years and Medical Research Council dyspnoea score 3 (2-5). 21 patients had internet access. Participants described greater use, acceptance and normalisation of the internet since the advent of the COVID-19 pandemic. They described multifaceted internet use: functional, self-investment (improving health and wellbeing) and social. The concept of SELF-BREATHE was highly valued, and most participants with internet access were willing to use it. In addition to technical limitations, personal choice and perceived value of the internet were important factors that underpinned readiness to use online resources. Conclusion: These findings suggest that patients living with chronic breathlessness that have access to the internet would have the potential to benefit from the online SELF-BREATHE intervention, if given the opportunity.
Language	English
Publishing date	2022-02-21
Publishing country	England
Document type	Journal Article
ZDB-ID	2827830-6
ISSN	2312-0541
ISSN	2312-0541
DOI	10.1183/23120541.00557-2021
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article: "The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE.

Reilly, Charles C / Bristowe, Katherine / Roach, Anna / Chalder, Trudie / Maddocks, Matthew / Higginson, Irene J

ERJ open research

2022 Volume 8, Issue 3

Abstract: Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been ... ...

Abstract	Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices. This study aimed to explore the preferences and choices of patients regarding the content of an online self-guided chronic breathlessness supportive intervention (SELF-BREATHE). Methods: Semi-structured telephone interviews were conducted with adults living with advanced malignant and nonmalignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results: 25 patients with advanced disease and chronic breathlessness (COPD n=13, lung cancer n=8, interstitial lung disease n=3, bronchiectasis n=1; 17 male; median (range) age 70 (47-86) years; median (range) Medical Research Council dyspnoea score 3 (2-5)) were interviewed. Individuals highlighted strong preferences for focused education, methods to increase self-motivation and engagement, interventions targeting breathing and physical function, software capability to personalise the content of SELF-BREATHE to make it more meaningful to the user, and aesthetically designed content using various communication methods including written, video and audio content. Furthermore, they identified the need to address motivation as a key potential determinant of the success of SELF-BREATHE. Conclusion: Our findings provide an essential foundation for future digital intervention development (SELF-BREATHE) and scaled research.
Language	English
Publishing date	2022-07-11
Publishing country	England
Document type	Journal Article
ZDB-ID	2827830-6
ISSN	2312-0541
ISSN	2312-0541
DOI	10.1183/23120541.00093-2022
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: The plant endoplasmic reticulum UPRome: A repository and pathway browser for genes involved in signaling networks linked to the endoplasmic reticulum.

Herath, Venura / Connolly, Kaylee / Roach, Anna / Ausekar, Ashish / Persky, Tracy / Verchot, Jeanmarie

Plant direct

2022 Volume 6, Issue 7, Page(s) e431

Abstract	The endoplasmic reticulum (ER) houses sensors that respond to environmental stress and underly plants' adaptative responses. These sensors transduce signals that lead to changes in nuclear gene expression. The ER to nuclear signaling pathways are primarily attributed to the unfolded protein response (UPR) and are also integrated with a wide range of development, hormone, immune, and stress signaling pathways. Understanding the role of the UPR in signaling network mechanisms that associate with particular phenotypes is crucially important. While UPR-associated genes are the subject of ongoing investigations in a few model plant systems, most remain poorly annotated, hindering the identification of candidates across plant species. This open-source curated database provides a centralized resource of peer reviewed knowledge of ER to nuclear signaling pathways for the plant community. We provide a UPRome interactive viewer for users to navigate through the pathways and to access annotated information. The plant ER UPRome website is located at http://uprome.tamu.edu. We welcome contributions from the researchers studying the ER UPR to incorporate additional genes into the database through the "contact us" page.
Language	English
Publishing date	2022-07-20
Publishing country	England
Document type	Journal Article
ISSN	2475-4455
ISSN (online)	2475-4455
DOI	10.1002/pld3.431
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Between loss and restoration: The role of liminality in advancing theories of grief and bereavement.

Bristowe, Katherine / Timmins, Liadh / Pitman, Alexandra / Braybrook, Debbie / Marshall, Steve / Johnson, Katherine / King, Michael / Roach, Anna / Yi, Deokhee / Almack, Kathryn / Day, Elizabeth / Clift, Paul / Rose, Ruth / Harding, Richard

Social science & medicine (1982)

2024 Volume 344, Page(s) 116616

Abstract: A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been ... ...

Abstract	A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been explored. To advance grief theory this paper reports analysis of the survey free-text data to examine the relationship between social support and emotional responses to bereavement. Individuals bereaved of a civil partner or spouse 6-10 months previously were identified through death registration data. 569/1945 (29 %) completed surveys were received. Of those, 311 participants (55 %) provided responses to two free-text questions which asked about their 'feelings since the death of their partner or spouse', and 'about the support around' them. Data were analysed using corpus-assisted discourse analysis and the discourse dynamics approach for figurative language. Participants described diverse emotional responses to the bereavement (e.g. sadness, anger, denial, acceptance), and the value of formal and informal bereavement support. Although many of the experiences described are accounted for in existing grief theory, some participants described a liminal experience not recognised within these theories. They felt trapped, unable to engage with loss or restoration, and unable to move forward as their planned future no longer existed. They sought out 'communitas' (solidarity in experiences), but often found support from their social networks had diminished. Metaphors were used to describe this liminality, with partner grief expressed as a dark agentic force, a monster, an abyss, and as water. The findings of this study offer original insights into experiences and trajectories of bereavement, and our understandings of prolonged or complicated grief. A novel model 'Between Loss and Restoration' is presented to include these experiences. Recognition of the place for liminality within the spectrum of grief experiences could enhance grief literacy and improve formal and informal bereavement support provision.
MeSH term(s)	Humans ; Bereavement ; Grief ; Anger ; Loneliness ; Language
Language	English
Publishing date	2024-01-23
Publishing country	England
Document type	Journal Article
ZDB-ID	4766-1
ISSN	1873-5347 ; 0037-7856 ; 0277-9536
ISSN (online)	1873-5347
ISSN	0037-7856 ; 0277-9536
DOI	10.1016/j.socscimed.2024.116616
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Article ; Online: 'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

Bristowe, Katherine / Braybrook, Debbie / Scott, Hannah M / Coombes, Lucy / Harðardóttir, Daney / Roach, Anna / Ellis-Smith, Clare / Bluebond-Langner, Myra / Fraser, Lorna / Downing, Julia / Murtagh, Fliss / Harding, Richard

Palliative medicine

2024 Volume 38, Issue 3, Page(s) 379–388

Abstract: Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to ...

Abstract	Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a Setting/participants: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
MeSH term(s)	Humans ; Child ; Adolescent ; Qualitative Research ; Palliative Care/psychology ; Hospice Care ; Language ; Communication
Language	English
Publishing date	2024-03-04
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241233977
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Article ; Online: What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Roach, Anna / Bristowe, Katherine / Bluebond-Langner, Myra / Fraser, Lorna K / Downing, Julia / Farsides, Bobbie / Murtagh, Fliss Em / Ellis-Smith, Clare / Harding, Richard

Palliative medicine

2024 Volume 38, Issue 4, Page(s) 471–484

Abstract: Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is ... ...

Abstract	Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
MeSH term(s)	Adult ; Child ; Humans ; Adolescent ; Cross-Sectional Studies ; Palliative Care ; Qualitative Research ; Caregivers ; Outcome Assessment, Health Care
Language	English
Publishing date	2024-03-13
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241234797
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