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Article ; Online: Lived experience codesign of self-harm interventions

Claudia Cooper / Natalia Lopez Chemas / Lucy C Wright

BMJ Open, Vol 13, Iss

a scoping review

2023 Volume 12

Abstract: Objectives This study aims to map existing literature describing how people with lived experience of self-harm have engaged in codesigning self-harm interventions, understand barriers and facilitators to this engagement, and how the meaningfulness of ... ...

Abstract	Objectives This study aims to map existing literature describing how people with lived experience of self-harm have engaged in codesigning self-harm interventions, understand barriers and facilitators to this engagement, and how the meaningfulness of codesign has been evaluated.Design Scoping review by Joanna Briggs Institute methodology. A protocol was published online (http://dx.doi.org/10.17605/OSF.IO/P52UD).Data sources PubMed, Embase, PsycINFO, Web of Science, Cochrane Library, PROSPERO, ClinicalTrials.gov and relevant websites were searched on 24 December 2022 (repeated 4 November 2023).Eligibility criteria We included studies where individuals with lived experience of self-harm (first-hand or caregiver) have codesigned self-harm interventions.Data extraction and synthesis Results were screened at title and abstract level, then full-text level by two researchers independently. Prespecified data were extracted, charted and sorted into themes.Results We included 22 codesigned interventions across mobile health, educational settings, prisons and emergency departments. Involvement varied from designing content to multistage involvement in planning, delivery and dissemination. Included papers described the contribution of 159 female, 39 male and 21 transgender or gender diverse codesigners. Few studies included contributors from a minoritised ethnic or LGBTQIA+ group. Six studies evaluated how meaningfully people with lived experience were engaged in codesign: by documenting the impact of contributions on intervention design or through postdesign reflections. Barriers included difficulties recruiting inclusively, making time for meaningful engagement in stretched services and safeguarding concerns for codesigners. Explicit processes for ensuring safety and well-being, flexible schedules, and adequate funding facilitated codesign.Conclusions To realise the potential of codesign to improve self-harm interventions, people with lived experience must be representative of those who use services. This requires ...
Keywords	Medicine ; R
Subject code	306 ; 360
Language	English
Publishing date	2023-12-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Association between sensory impairment and suicidal ideation and attempt

Claudia Cooper / Maitri Khurana / Natalie Shoham / Alexandra Laura Pitman

BMJ Open, Vol 11, Iss

a cross-sectional analysis of nationally representative English household data

2021 Volume 2

Abstract: Objectives Sensory impairments are associated with worse mental health and poorer quality of life, but few studies have investigated whether sensory impairment is associated with suicidal behaviour in a population sample. We investigated whether visual ... ...

Abstract	Objectives Sensory impairments are associated with worse mental health and poorer quality of life, but few studies have investigated whether sensory impairment is associated with suicidal behaviour in a population sample. We investigated whether visual and hearing impairments were associated with suicidal ideation and attempt.Design National cross-sectional study.Setting Households in England.Participants We analysed data for 7546 household residents in England, aged 16 and over from the 2014 Adult Psychiatric Morbidity Survey.Exposures Sensory impairment (either visual or hearing), Dual sensory impairment (visual and hearing), visual impairment, hearing impairment.Primary outcome Suicidal ideation and suicide attempt in the past year.Results People with visual or hearing sensory impairments had twice the odds of past-year suicidal ideation (OR 2.06; 95% CI 1.17 to 2.73; p<0.001), and over three times the odds of reporting past-year suicide attempt (OR 3.12; 95% CI 1.57 to 6.20; p=0.001) compared with people without these impairments. Similar results were found for hearing and visual impairments separately and co-occurring.Conclusions We found evidence that individuals with sensory impairments are more likely to have thought about or attempted suicide in the past year than individuals without.
Keywords	Medicine ; R
Subject code	150
Language	English
Publishing date	2021-02-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Process evaluation of the New Interventions for independence in Dementia Study (NIDUS) Family stream randomised controlled trial

Julie Barber / Laurie Butler / Claudia Cooper / Sarah Morgan-Trimmer / Danielle Laura Wyman / Peter Bright

BMJ Open, Vol 12, Iss

protocol

2022 Volume 6

Keywords	Medicine ; R
Language	English
Publishing date	2022-06-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Autism in England

Elizabeth O'Nions / Irene Petersen / Joshua E.J. Buckman / Rebecca Charlton / Claudia Cooper / Anne Corbett / Francesca Happé / Jill Manthorpe / Marcus Richards / Rob Saunders / Cathy Zanker / Will Mandy / Joshua Stott

The Lancet Regional Health. Europe, Vol 29, Iss , Pp 100626- (2023)

assessing underdiagnosis in a population-based cohort study of prospectively collected primary care dataResearch in context

2023

Abstract: Summary: Background: Autism has long been viewed as a paediatric condition, meaning that many autistic adults missed out on a diagnosis as children when autism was little known. We estimated numbers of diagnosed and undiagnosed autistic people in England, ...

Abstract	Summary: Background: Autism has long been viewed as a paediatric condition, meaning that many autistic adults missed out on a diagnosis as children when autism was little known. We estimated numbers of diagnosed and undiagnosed autistic people in England, and examined how diagnostic rates differed by socio-demographic factors. Methods: This population-based cohort study of prospectively collected primary care data from IQVIA Medical Research Data (IMRD) compared the prevalence of diagnosed autism to community prevalence to estimate underdiagnosis. 602,433 individuals registered at an English primary care practice in 2018 and 5,586,100 individuals registered between 2000 and 2018 were included. Findings: Rates of diagnosed autism in children/young people were much higher than in adults/older adults. As of 2018, 2.94% of 10- to 14-year-olds had a diagnosis (1 in 34), vs. 0.02% aged 70+ (1 in 6000). Exploratory projections based on these data suggest that, as of 2018, 463,500 people (0.82% of the English population) may have been diagnosed autistic, and between 435,700 and 1,197,300 may be autistic and undiagnosed (59–72% of autistic people, 0.77%–2.12% of the English population). Age-related inequalities were also evident in new diagnoses (incidence): c.1 in 250 5- to 9-year-olds had a newly-recorded autism diagnosis in 2018, vs. c.1 in 4000 20- to 49-year-olds, and c.1 in 18,000 people aged 50+. Interpretation: Substantial age-related differences in the proportions of people diagnosed suggest an urgent need to improve access to adult autism diagnostic services. Funding: Dunhill Medical Trust, Economic and Social Research Council, Medical Research Council, National Institute for Health Research, the Wellcome Trust, and the Royal College of Psychiatrists.
Keywords	Autism spectrum condition ; Primary care ; Underdiagnosis ; Under-diagnosis ; Incidence ; Prevalence ; Public aspects of medicine ; RA1-1270
Subject code	360
Language	English
Publishing date	2023-06-01T00:00:00Z
Publisher	Elsevier
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Correction

Trials, Vol 25, Iss 1, Pp 1-

Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial

2024 Volume 1

Keywords	Medicine (General) ; R5-920
Language	English
Publishing date	2024-01-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Exploring how people with dementia can be best supported to manage long-term conditions

Julie Beresford-Dent / Jessica Laura Rees / Alexandra Burton / Monica Leverton / Penny Rapaport / Ruminda Herat Gunaratne / Claudia Cooper

BMJ Open, Vol 10, Iss

a qualitative study of stakeholder perspectives

2020 Volume 10

Abstract: Objectives To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.Design Secondary thematic analysis of 82 semi-structured interviews.Setting Community settings across ... ...

Abstract	Objectives To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.Design Secondary thematic analysis of 82 semi-structured interviews.Setting Community settings across the United Kingdom.Participants 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.Results We identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit.Conclusion The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a ...
Keywords	Medicine ; R
Subject code	360
Language	English
Publishing date	2020-10-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Physical health monitoring in dementia and associations with ethnicity

Cini Bhanu / Mary Elizabeth Jones / Kate Walters / Irene Petersen / Jill Manthorpe / Rosalind Raine / Naaheed Mukadam / Claudia Cooper

BJGP Open, Vol 4, Iss

a descriptive study using electronic health records

2020 Volume 4

Abstract: Background: Good physical health monitoring can increase quality of life for people with dementia, but the monitoring may vary and ethnic inequalities may exist. Aim: To investigate UK primary care routine physical health monitoring for people with ... ...

Abstract	Background: Good physical health monitoring can increase quality of life for people with dementia, but the monitoring may vary and ethnic inequalities may exist. Aim: To investigate UK primary care routine physical health monitoring for people with dementia by: (a) ethnic groups, and (b) comorbidity status. Design & setting: A retrospective cohort study was undertaken using electronic primary care records in the UK. Method: Physical health monitoring was compared in people with dementia from white, black, and Asian ethnic groups and compared those with ≥1 comorbidity versus no comorbidity, from 1 April 2015 to 31 March 2016. Using the Dementia: Good Care Planning framework and expert consensus, good care was defined as receiving, within 1 year: a dementia review; a blood pressure (BP) check (at least one); a GP consultation (at least one); a weight and/or body mass index (BMI) recording (at least one); and an influenza vaccination. Results: Of 20 821 people with dementia, 68% received a dementia review, 80% at least one BP recording, 97% at least one GP contact, 48% a weight and/or BMI recording, and 81% an influenza vaccination in 1 year. Compared with white people, black people were 23% less likely and Asian people 16% less likely to have weight recorded (adjusted incidence rate ratio [IRR] = 0.77, 95% confidence interval [CI] = 0.60 to 0.98/0.84, 0.71 to 1.00). People without comorbidities were less likely to have weight recorded (adjusted IRR = 0.74, 95% CI = 0.69 to 0.79) and BP monitored (adjusted IRR = 0.71, 95% CI = 0.68 to 0.75). Conclusion: Ethnic group was not associated with differences in physical health monitoring, other than weight monitoring. Comorbidity status was associated with weight and BP monitoring. Physical health monitoring in dementia, in particular nutrition, requires improvement.
Keywords	dementia ; large database research ; inequalities ; ethnic groups ; primary health care ; Medicine (General) ; R5-920
Subject code	360
Language	English
Publishing date	2020-09-01T00:00:00Z
Publisher	Royal College of General Practitioners
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Care workers, the unacknowledged persons in person-centred care

Adam Kadri / Penny Rapaport / Gill Livingston / Claudia Cooper / Sarah Robertson / Paul Higgs

PLoS ONE, Vol 13, Iss 7, p e

A secondary qualitative analysis of UK care home staff interviews.

2018 Volume 0200031

Abstract: Personhood discourses in dementia care have gained prominence and current care home standards mandate that care should be "person-centred". However, it is unclear how the personhood of staff is construed within the care relationship. This paper aims to ... ...

Abstract	Personhood discourses in dementia care have gained prominence and current care home standards mandate that care should be "person-centred". However, it is unclear how the personhood of staff is construed within the care relationship. This paper aims to explore how the personhood of paid carers of people with dementia can be understood by focussing on the views and experiences of care home staff. We undertook a secondary qualitative analysis of interviews with 25 paid care staff in England, conducted as part of the MARQUE (Managing Agitation and Raising QUality of lifE) study. The authors inductively developed themes around the topic of personhood for staff, contrasting management and care staff perspectives. We found that many care staff are not identified as persons in their own right by their employing institutions, and that there is a general lack of acknowledgment of the moral work of caring that occurs within formal care work. This oversight can reduce the complex relationships of care work to a series of care tasks, challenges care workers' self-worth and self-efficacy, and impede their efforts to deliver person-centred care. We conclude that care staff status as persons in their own right should be explicitly considered in quality standards and supported by employers' policies and practices, not simply for their role in preserving the personhood of people with dementia but for their own sense of valued personhood. Enhancing staff personhood may also result in improved care.
Keywords	Medicine ; R ; Science ; Q
Subject code	360
Language	English
Publishing date	2018-01-01T00:00:00Z
Publisher	Public Library of Science (PLoS)
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Healthcare resource utilisation and costs of agitation in people with dementia living in care homes in England - The Managing Agitation and Raising QUality of LifE in Dementia (MARQUE) study.

Monica Panca / Gill Livingston / Julie Barber / Claudia Cooper / Francesca La Frenais / Louise Marston / Sian Cousins / Rachael M Hunter

PLoS ONE, Vol 14, Iss 2, p e

2019 Volume 0211953

Abstract: Background People with dementia living in care homes often experience clinically significant agitation; however, little is known about its economic impact. Objective To calculate the cost of agitation in people with dementia living in care homes. Methods ...

Abstract	Background People with dementia living in care homes often experience clinically significant agitation; however, little is known about its economic impact. Objective To calculate the cost of agitation in people with dementia living in care homes. Methods We used the baseline data from 1,424 residents with dementia living in care homes (part of Managing Agitation and Raising QUality of lifE in dementia (MARQUE) study) that had Cohen-Mansfield Agitation Inventory (CMAI) scores recorded. We investigated the relationship between residents' health and social care costs and severity of agitation based on the CMAI total score. In addition, we assessed resource utilisation and compared costs of residents with and without clinically significant symptoms of agitation using the CMAI over and above the cost of the care home. Results Agitation defined by the CMAI was a significant predictor of costs. On average, a one-point increase in the CMAI will lead to a 0.5 percentage points (cost ratio 1.005, 95%CI 1.001 to 1.010) increase in the annual costs. The excess annual cost associated with agitation per resident with dementia was £1,125.35. This suggests that, on average, agitation accounts for 44% of the annual health and social care costs of dementia in people living in care homes. Conclusion Agitation in people with dementia living in care homes contributes significantly to the overall costs increasing as the level of agitation increases. Residents with the highest level of agitation cost nearly twice as much as those with the lowest levels of agitation, suggesting that effective strategies to reduce agitation are likely to be cost-effective in this setting.
Keywords	Medicine ; R ; Science ; Q
Subject code	360
Language	English
Publishing date	2019-01-01T00:00:00Z
Publisher	Public Library of Science (PLoS)
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Feasibility and acceptability of NIDUS-Professional, a training and support intervention for homecare workers caring for clients living with dementia

Iain Lang / Victoria Vickerstaff / Kenneth Rockwood / Jill Manthorpe / Daniel Kelleher / Kathryn Lord / Penny Rapaport / Claudia Cooper / Kate Walters / Julie A Barber / Sara Banks / Larisa Duffy / Sedigheh Zabihi / Ayesha Dar / Freya Koutsoubelis / Clare Mason / Sandra Duggan / Helen Kales

BMJ Open, Vol 12, Iss

a cluster-randomised feasibility trial protocol

2022 Volume 12

Abstract: Introduction Most people living with dementia want to remain living in their own homes, and are supported to do so by family carers and homecare workers. There are concerns that homecare is often unable to meet the needs of this client group, with ... ...

Abstract	Introduction Most people living with dementia want to remain living in their own homes, and are supported to do so by family carers and homecare workers. There are concerns that homecare is often unable to meet the needs of this client group, with limited evidence regarding effective interventions to improve it for people living with dementia. We have developed a training and support programme for homecare workers (NIDUS-Professional) to be delivered alongside support sessions for people living with dementia and their family carers (NIDUS-Family). We aim to assess (1) its acceptability among homecare workers and employing agencies, and (2) the feasibility of homecare workers, people living with dementia and their family carers completing the outcomes of intervention in a future randomised controlled trial.Methods and analysis This is a cluster-randomised (2:1) single-blind, multisite feasibility trial. We aim to recruit 60–90 homecare workers, 30–60 clients living with dementia and their family carers through 6–9 English homecare agencies. In the intervention arm, homecare staff will be offered six group sessions on video call over three months, followed by monthly group sessions over the subsequent three-month period. Outcome measures will be collected at baseline and at six months.Ethics and dissemination The study received ethical approval on 7 January 2020 from the Camden & King’s Cross Research Ethics Committee. Study reference: 19/LO/1667. Findings will be disseminated through a peer-reviewed journal, conference presentation and blog to research and clinical audiences; we will attend forums to present findings to participating homecare agencies and their clients.Trial registration number ISRCTN15757555.
Keywords	Medicine ; R
Subject code	360
Language	English
Publishing date	2022-12-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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