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Book ; Online: A research handbook for patient and public involvement researchers

Lovell, Karina / Callaghan, Patrick / Brooks, Helen / Bee, Penny

2018

Abstract: This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most ... ...

Abstract	This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most major health-research programmes, and this book is designed to equip these individuals with the knowledge and skills necessary for meaningful participation. Edited by award-winning mental-health researchers, the book has been produced in partnership with mental-health-service users and carers with experience of research involvement. It includes personal reflections from these individuals alongside detailed information on quantitative, qualitative and health-economics research methods, and comprehensively covers all the basics needed for large-scale health research projects: systematic reviews; research design and analysis using both qualitative and quantitative approaches; health economics; research ethics; impact and dissemination. This book was developed during a five-year research programme funded by the UK's National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). The handbook clearly outlines research practices, and gives an insight into how public and patient representatives can be involved in them and shape decisions. Each chapter ends with a reflective exercise, and there are also some suggested sources of additional reading. People who get involved in health research as experts from experience now have a textbook to support their research involvement journey
Keywords	Medicine (General) ; Psychiatry ; Science (General)
Size	1 electronic resource (145 p.)
Publisher	Manchester University Press
Document type	Book ; Online
Note	English ; Open Access
HBZ-ID	HT020101421
ISBN	9781526136527 ; 152613652X
Database	ZB MED Catalogue: Medicine, Health, Nutrition, Environment, Agriculture

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Article ; Online: Modelling social networks for children of parents with severe and enduring mental illness: an evidence based modification to the network episode model.

Nevard, Imogen / Brooks, Helen / Gellatly, Judith / Bee, Penny

BMC psychology

2024 Volume 12, Issue 1, Page(s) 162

Abstract: The Network Episode Model (NEM) is a well utilised model conceptualising how social networks, valuable resources which can positively impact wellbeing and functional outcomes, are responsive to the needs of people with physical and mental health ... ...

Abstract	The Network Episode Model (NEM) is a well utilised model conceptualising how social networks, valuable resources which can positively impact wellbeing and functional outcomes, are responsive to the needs of people with physical and mental health difficulties. Children of parents with severe and enduring mental illness (COPMI) are impacted by these illnesses through the intersecting roles of kin relation, informal carer, and dependent. However, it is not clear that social networks effectively respond in kind to the child's episodic need.We draw upon qualitative data to propose a new multi-factorial conceptual model (COPMI-NEM), triangulating parental mental illness, child's developmental stage and social ties to theorise how social networks do respond and adapt to children's needs.The model illustrates how networks are typically flexible and responsive to visible age-related needs, but less reactive to more obscured needs. Successful network navigation and negotiation of support relies on multiple factors including the child's ability to successfully activate social ties and the availability of formal networks. We propose a new theoretically and empirically informed NEM model also available for testing, refinement and validation in other young carer populations exposed to episodic parental health needs. Findings from this study could be used to generate network informed interventions for this and comparable populations.
MeSH term(s)	Child ; Humans ; Mental Disorders/psychology ; Parents/psychology ; Mental Health ; Social Networking ; Caregivers/psychology
Language	English
Publishing date	2024-03-19
Publishing country	England
Document type	Journal Article
ZDB-ID	2705921-2
ISSN	2050-7283 ; 2050-7283
ISSN (online)	2050-7283
ISSN	2050-7283
DOI	10.1186/s40359-024-01647-3
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Sleep problems and referral intentions in mental health services: service user self-report and staff proxy report surveys.

Faulkner, Sophie M / Drake, Richard J / Eisner, Emily / Bee, Penny E

BMC psychiatry

2023 Volume 23, Issue 1, Page(s) 583

Abstract: Background: Sleep problems are common in mental health service users, but few non-pharmacological therapies are offered. Therapies are being developed and tested, but there may be barriers to these therapies reaching those who need them.: Methods: ... ...

Abstract	Background: Sleep problems are common in mental health service users, but few non-pharmacological therapies are offered. Therapies are being developed and tested, but there may be barriers to these therapies reaching those who need them. Methods: Light-Dark and Activity Rhythm Therapy (L-DART), is a new sleep therapy delivered by an occupational therapist, which has been feasibility tested in people with schizophrenia spectrum diagnoses. This paper presents two surveys, conducted with mental health staff and service users, on sleep problems, treatment wishes; and barriers and facilitators to uptake of L-DART or similar therapies. Descriptive statistics, single-level and multi-level ordinal logistic regression were used to examine factors associated with sleep problems and referral intentions. Findings: Sleep problems were commonly identified by staff and service users, there was demand for non-pharmacological intervention across diagnostic and demographic categories, but staff readiness to refer differed according to NHS Trust and service user diagnosis. Staff and service user reports differed in awareness of sleep disordered breathing and parasomnias, and wish for referral. Staff were more confident identifying sleep problems than addressing them, but more training was associated with greater confidence concerning both assessment and treatment. Conclusions: A range of sleep problems are prevalent and recognised in mental health service users, and there is an unmet need for non-pharmacological sleep interventions. Improving suitable resources to support self-management in this group may help; Staff and service users also reported a high readiness to refer or be referred for sleep interventions. Staff training to improve identification of sleep problems, and differentiation between types of sleep problems, would support access to the most appropriate treatments.
MeSH term(s)	Humans ; Intention ; Self Report ; Mental Health Services ; Mental Health ; Sleep Wake Disorders/therapy
Language	English
Publishing date	2023-08-10
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2050438-X
ISSN	1471-244X ; 1471-244X
ISSN (online)	1471-244X
ISSN	1471-244X
DOI	10.1186/s12888-023-04817-6
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Article ; Online: Light-Dark and Activity Rhythm Therapy (L-DART) to Improve Sleep in People with Schizophrenia Spectrum Disorders: A Single-Group Mixed Methods Study of Feasibility, Acceptability and Adherence.

Faulkner, Sophie / Didikoglu, Altug / Byrne, Rory / Drake, Richard / Bee, Penny

Clocks & sleep

2023 Volume 5, Issue 4, Page(s) 734–754

Abstract: People with a diagnosis of schizophrenia often have poor sleep, even when their psychotic symptoms are relatively well managed. This includes insomnia, sleep apnoea, hypersomnia, and irregular or non-24 h sleep-wake timing. Improving sleep would better ... ...

Abstract	People with a diagnosis of schizophrenia often have poor sleep, even when their psychotic symptoms are relatively well managed. This includes insomnia, sleep apnoea, hypersomnia, and irregular or non-24 h sleep-wake timing. Improving sleep would better support recovery, yet few evidence-based sleep treatments are offered to this group. This paper presents a mixed methods feasibility and acceptability study of Light-Dark and Activity Rhythm Therapy (L-DART). L-DART is delivered by an occupational therapist over 12 weeks. It is highly personalisable to sleep phenotypes and circumstances. Ten participants with schizophrenia spectrum diagnoses and sleep problems received L-DART; their sleep problems and therapy goals were diverse. We measured recruitment, attrition, session attendance, and adverse effects, and qualitatively explored acceptability, engagement, component delivery, adherence, activity patterns, dynamic light exposure, self-reported sleep, wellbeing, and functioning. Recruitment was ahead of target, there was no attrition, and all participants received the minimum 'dose' of sessions. Acceptability assessed via qualitative reports and satisfaction ratings was good. Adherence to individual intervention components varied, despite high participant motivation. All made some potentially helpful behaviour changes. Positive sleep and functioning outcomes were reported qualitatively as well as in outcome measures. The findings above support testing the intervention in a larger randomised trial ISRCTN11998005.
Language	English
Publishing date	2023-12-04
Publishing country	Switzerland
Document type	Journal Article
ISSN	2624-5175
ISSN (online)	2624-5175
DOI	10.3390/clockssleep5040048
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Parity of esteem and systems thinking: a theory informed qualitative inductive thematic analysis.

Owens, Janine / Lovell, Karina / Brown, Abigail / Bee, Penny

BMC psychiatry

2022 Volume 22, Issue 1, Page(s) 650

Abstract: Background: Parity of Esteem (PoE) is about equality between mental and physical health but is a term lacking definition and clarity. The complexity of the field of mental health and the conversations around PoE add to its opacity. Therefore, the aim of ...

Abstract	Background: Parity of Esteem (PoE) is about equality between mental and physical health but is a term lacking definition and clarity. The complexity of the field of mental health and the conversations around PoE add to its opacity. Therefore, the aim of this study is to use systems thinking to explore the strengths and challenges of using PoE. Methods: This is a secondary analysis of descriptive qualitative data, from 27 qualitative interviews, utilising the World Health Organisation (WHO) system domains as a framework for the inductive thematic analysis. Results: Examining the current strengths and challenges of systems in mental and physical healthcare using the WHO domains and macro, meso and micro levels, identifies specific actions to redress inequity between mental and physical health provision. Conclusion: The evidence suggests that moving PoE from rhetoric towards reality requires new configurations with a systems orientation, which uses macro, meso and micro levels to analyse and understand the complexity of relations within and between domain levels and reorienting funding, training and measurement. This requires embedding new competencies, infrastructures and practices within an effective learning healthcare system.
MeSH term(s)	Humans ; Communication ; Delivery of Health Care ; Qualitative Research ; Systems Analysis
Language	English
Publishing date	2022-10-19
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2050438-X
ISSN	1471-244X ; 1471-244X
ISSN (online)	1471-244X
ISSN	1471-244X
DOI	10.1186/s12888-022-04299-y
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Telephone treatments in Improving Access to Psychological Therapies services: an analysis of use and impact on treatment uptake.

Saxon, David / Barkham, Michael / Bee, Penny / Gellatly, Judith / Faija, Cintia / Bower, Peter

BMC psychiatry

2023 Volume 23, Issue 1, Page(s) 95

Abstract: Background: There is debate about how best to increase access to psychological therapy and deliver mental healthcare effectively and efficiently at a national level. One trend is the increased use of the telephone to deliver therapy. However, there is ... ...

Abstract	Background: There is debate about how best to increase access to psychological therapy and deliver mental healthcare effectively and efficiently at a national level. One trend is the increased use of the telephone to deliver therapy. However, there is the potential to disadvantage certain patient groups and/or impact on uptake of help. This study aims to answer three questions: (i) Which factors are associated with being offered an assessment by telephone? (ii) Which factors are associated with attendance at assessment? and (iii) What is the impact of an assessment by telephone on subsequent treatment appointment? Methods: Routine outcome data was provided by seven UK Improving Access to Psychological Therapy services. The analysis sample comprised 49,923 patients who referred to 615 general practices in 2017. Multilevel modelling, including service and GP practice as random factors, was used to answer the three research questions. Results: The offer of an initial assessment by telephone was strongly associated with local service configuration. Patient self-referral, a shorter wait, greater age and lower deprivation were associated with attendance at assessment and subsequent treatment session. Telephone mode assessment had no impact on the uptake of the assessment but may influence the uptake of further treatment if this was also by telephone. The practitioner carrying out the assessment had a significant effect on subsequent treatment uptake. Conclusion: Offering telephone assessments does not have a negative impact on uptake of assessment and services may benefit by facilitating and integrating telephone assessments into their systems. The COVID-19 pandemic has accelerated the use of telephone and other remote means of delivery, and results from this study can inform services to consider how best to re-configure post-pandemic.
MeSH term(s)	Humans ; Pandemics ; COVID-19 ; General Practice ; Referral and Consultation ; Telephone
Language	English
Publishing date	2023-02-07
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2050438-X
ISSN	1471-244X ; 1471-244X
ISSN (online)	1471-244X
ISSN	1471-244X
DOI	10.1186/s12888-022-04404-1
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Article ; Online: Providing Telephone-Based Support for Patients With Haematological Malignancies: A Qualitative Investigation of Expert Nurses.

Liptrott, Sarah J / Bee, Penny / Lovell, Karina

The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres

2021 Volume 54, Issue 2, Page(s) 121–133

Abstract: Background: Telephone-based interventions are frequently used to address cancer patient's needs, often delivered by nurses; however, little is known about nurses' opinions of such interventions.: Purpose: The objective of this study was to ... ...

Abstract	Background: Telephone-based interventions are frequently used to address cancer patient's needs, often delivered by nurses; however, little is known about nurses' opinions of such interventions. Purpose: The objective of this study was to investigate expert nurses' perceptions of hemato-oncology patient's needs, use of telephone interventions providing support and symptom management and intervention acceptability from a service provider perspective. A qualitative study was undertaken with focus group and individual interview. Inductive and deductive data analysis was performed using Framework Analysis and the Theoretical Framework of Acceptability. Results: Two themes emerged: (1) perceived needs of haemato-oncology patients across the cancer trajectory - multifactorial influences, dynamic information needs, and continuity of care, (2) acceptability for nurses delivering interventions was determined by identification of need, agreed expectations and organisational support for the intervention. Conclusions: Greater understanding of contextual factors for recipients and individuals delivering healthcare interventions may contribute to identification of potential barriers and facilitators to adoption in clinical practice.
MeSH term(s)	Hematologic Neoplasms ; Humans ; Neoplasms ; Palliative Care ; Qualitative Research ; Telephone
Language	English
Publishing date	2021-05-02
Publishing country	United States
Document type	Journal Article
ZDB-ID	1036826-7
ISSN	1705-7051 ; 0844-5621
ISSN (online)	1705-7051
ISSN	0844-5621
DOI	10.1177/08445621211013231
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Article ; Online: Influence of Needs and Experiences of Haemato-Oncology Patients on Acceptability of a Telephone Intervention for Support and Symptom Management: A Qualitative Study.

Liptrott, Sarah J / Lovell, Karina / Bee, Penny

Clinical nursing research

2020 Volume 29, Issue 8, Page(s) 627–637

Abstract: Healthcare technologies are increasingly used to address the unmet needs of patients with cancer; however new service developments must be acceptable to patients. The objective of this study was to determine the unmet needs of haemato-oncology patients ... ...

Abstract	Healthcare technologies are increasingly used to address the unmet needs of patients with cancer; however new service developments must be acceptable to patients. The objective of this study was to determine the unmet needs of haemato-oncology patients and their influence on the perceived acceptability and participation in a telephone intervention delivering. A qualitative study was designed interviewing 20 participants having received the intervention. Data were analysed inductively and deductively using Framework Analysis. Three core themes emerged: (1) fluctuations in emotional distress and coping across the cancer trajectory with evidence of adaptive and maladaptive coping; (2) potential deficits in patient support, continuity of care and information provision; and (3) intervention acceptability analysis underpinned by the Theoretical Framework of Acceptability showed acceptability was influenced by participants' subjective illness contexts and unmet needs.This work contributes to understanding of personal context as a determinant of intervention acceptability in order to enhance implementation strategies.
MeSH term(s)	Adaptation, Psychological ; Health Services Needs and Demand ; Humans ; Neoplasms ; Qualitative Research ; Telephone
Language	English
Publishing date	2020-07-08
Publishing country	United States
Document type	Journal Article
ZDB-ID	1146553-0
ISSN	1552-3799 ; 1054-7738
ISSN (online)	1552-3799
ISSN	1054-7738
DOI	10.1177/1054773820940865
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: A mixed methods expert opinion study on the optimal content and format for an occupational therapy intervention to improve sleep in schizophrenia spectrum disorders.

Faulkner, Sophie M / Drake, Richard J / Ogden, Margaret / Gardani, Maria / Bee, Penny E

PloS one

2022 Volume 17, Issue 6, Page(s) e0269453

Abstract: Introduction: People with schizophrenia spectrum disorder diagnoses commonly have poor sleep, which predicts various negative outcomes. The problems are diverse, including substantial circadian dysregulation, sleep-wake timing issues, hypersomnia ( ... ...

Abstract	Introduction: People with schizophrenia spectrum disorder diagnoses commonly have poor sleep, which predicts various negative outcomes. The problems are diverse, including substantial circadian dysregulation, sleep-wake timing issues, hypersomnia (excessive sleep), and more classic insomnia. Methods: This paper reports on a mixed methods expert opinion study based on the principles of Delphi methodology. The study examines and explores opinion on the optimal contents and format for an occupational therapy intervention to improve poor sleep in this population. Views of clinical and academic topic experts (n = 56), were elicited, examined and explored in three rounds, views from previous rounds being presented back to participants in subsequent rounds. Participants with relevant personal experience (n = 26) then rated and commented on suggestions, with a focus on acceptability. Descriptive statistics and graphs of ratings were triangulated with qualitative content analysis of free-text. Results: Participants emphasised the central importance of intervention personalisation, although the manner and extent of personalisation suggested varied. Many components and domains were acknowledged as important, with the challenge being how to keep such an intervention simple, brief, and feasible for end-users, for sustainable implementation. The strongest consensus was to address evening routine, daytime activity, and environmental interventions. Relaxation, mindfulness, thermoregulation, sensory factors, and cognitive or psychological approaches were rated as less important. There was disagreement on whether to include time in bed restriction, and how to address napping, as well as how far to address medication timing. Clinicians and researchers advocated some version of stimulus control, but participants with personal experience reported low levels of acceptability for this, describing entirely negative experiences using 'the 15-minute rule' (part of stimulus control). Conclusion: These results are informative for clinicians treating sleep problems in people with schizophrenia and related conditions, as well as for decision makers considering the potential contribution of the profession of occupational therapy toward sleep treatment.
MeSH term(s)	Expert Testimony ; Humans ; Occupational Therapy ; Schizophrenia/therapy ; Sleep ; Sleep Initiation and Maintenance Disorders/complications ; Sleep Initiation and Maintenance Disorders/therapy ; Sleep Wake Disorders/psychology
Language	English
Publishing date	2022-06-06
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0269453
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Mental health literacy in children and adolescents in low- and middle-income countries: a mixed studies systematic review and narrative synthesis.

Renwick, Laoise / Pedley, Rebecca / Johnson, Isobel / Bell, Vicky / Lovell, Karina / Bee, Penny / Brooks, Helen

European child & adolescent psychiatry

2022 Volume 33, Issue 4, Page(s) 961–985

Abstract: Mental illnesses are the leading cause of disease burden among children and young people (CYP) globally. Low- and middle-income countries (LMIC) are disproportionately affected. Enhancing mental health literacy (MHL) is one way to combat low levels of ... ...

Abstract	Mental illnesses are the leading cause of disease burden among children and young people (CYP) globally. Low- and middle-income countries (LMIC) are disproportionately affected. Enhancing mental health literacy (MHL) is one way to combat low levels of help-seeking and effective treatment receipt. We aimed to synthesis evidence about knowledge, beliefs and attitudes of CYP in LMICs about mental illnesses, their treatments and outcomes, evaluating factors that can enhance or impede help-seeking to inform context-specific and developmentally appropriate understandings of MHL. Eight bibliographic databases were searched from inception to July 2020: PsycInfo, EMBASE, Medline (OVID), Scopus, ASSIA (ProQuest), SSCI, SCI (Web of Science) CINAHL PLUS, Social Sciences full text (EBSCO). 58 papers (41 quantitative, 13 qualitative, 4 mixed methods) representing 52 separate studies comprising 36,429 participants with a mean age of 15.3 [10.4-17.4], were appraised and synthesized using narrative synthesis methods. Low levels of recognition and knowledge about mental health problems and illnesses, pervasive levels of stigma and low confidence in professional healthcare services, even when considered a valid treatment option were dominant themes. CYP cited the value of traditional healers and social networks for seeking help. Several important areas were under-researched including the link between specific stigma types and active help-seeking and research is needed to understand more fully the interplay between knowledge, beliefs and attitudes across varied cultural settings. Greater exploration of social networks and the value of collaboration with traditional healers is consistent with promising, yet understudied, areas of community-based MHL interventions combining education and social contact.
MeSH term(s)	Child ; Humans ; Adolescent ; Mental Health ; Developing Countries ; Health Literacy ; Mental Disorders/therapy ; Social Stigma
Language	English
Publishing date	2022-05-15
Publishing country	Germany
Document type	Systematic Review ; Journal Article ; Review
ZDB-ID	1118299-4
ISSN	1435-165X ; 1018-8827 ; 1433-5719
ISSN (online)	1435-165X
ISSN	1018-8827 ; 1433-5719
DOI	10.1007/s00787-022-01997-6
Database	MEDical Literature Analysis and Retrieval System OnLINE

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