ORCID Profile
0000-0002-8656-8830
Current Organisation
University of Nottingham
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Publisher: Queensland University of Technology
Date: 07-03-2015
Publisher: SAGE Publications
Date: 02-05-2019
Publisher: SAGE Publications
Date: 18-08-2022
DOI: 10.1177/10497323221118239
Abstract: Mental health ‘recovery narratives’ are increasingly used within teaching, learning and practice environments. The mainstreaming of their use has been critiqued by scholars and activists as a co-option of lived experience for organisational purposes. But how people report their experiences of telling their stories has not been investigated at scale. We present accounts from 71 people with lived experience of multiple inequalities of telling their stories in formal and informal settings. A reflexive thematic analysis was conducted within a critical constructivist approach. Our overarching finding was that questions of power were central to all accounts. Four themes were identified: (1) Challenging the status quo (2) Risky consequences (3) Producing ‘acceptable’ stories (4) Untellable stories. We discuss how the concept of narrative power foregrounds inequalities in settings within which recovery stories are invited and co-constructed, and conclude that power imbalances complicate the seemingly benign act of telling stories of lived experience.
Publisher: Springer Science and Business Media LLC
Date: 20-07-2020
DOI: 10.1186/S13063-020-04428-6
Abstract: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
Publisher: Springer Science and Business Media LLC
Date: 14-08-2023
DOI: 10.1007/S11469-023-01126-7
Abstract: The employment of mental health peer support (PS) is recommended in national and international mental health policy, and widely implemented across many countries. The key components of PS remain to be identified. This study aimed to develop a typology of components involved in one-to-one PS for adults in mental health services. A systematised review was performed to establish a preliminary long list of candidate components, followed by expert consultation ( n = 21) to refine the list. Forty-two publications were full-text reviewed, comprising 26 trial reports, nine training manuals, and seven change model papers. Two hundred forty-two candidate components were identified, which were thematically synthesised to 16 components and eight sub-components, categorised into four themes: recruitment, preparation, practice, and PS worker wellbeing. Our typology can inform reflection and planning of PS practice, and allow more rigorous and synthesised studies, such as component network meta-analyses, to characterise the impact of each component and their interactions.
Publisher: Springer Science and Business Media LLC
Date: 08-08-2022
DOI: 10.1186/S12913-022-08393-5
Abstract: Peer support work for substance use disorders is widely implemented in high-income countries. More research is still needed to understand its applicability in settings which have proportionately low budgets allocated to mental health. Peer Support Workers are in iduals who managed to achieve recovery from substance use disorders and help people remain engaged in their recovery and prevent relapse through shared understanding. To investigate the experience of peer support workers providing recovery support to people with substance use disorders in Egypt. A qualitative phenomenological design was used in which 17 adults working as peer support workers for substance use disorders were recruited by means of purposive and snowball s ling. A semi-structured interview with participants was conducted by phone or video-call. Interviews were transcribed and thematically analysed based on descriptive phenomenology. Three superordinate themes were identified: role responsibility, Peer Support Workers’ need for organizational and stakeholders’ support, and challenges to the role integrity. The findings indicate the need for national and governmental support to peer support workers engaged with people with substance use disorders in Egypt and educating families and the public about the role of peer support workers in substance use disorders.
Publisher: Public Library of Science (PLoS)
Date: 13-12-2019
Publisher: Springer Science and Business Media LLC
Date: 22-05-2019
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 03-2019
Publisher: Wiley
Date: 13-04-2021
DOI: 10.1111/JPM.12754
Abstract: Personal recovery concept is dominant in mental health systems when service user involvement is emphasized however, service user involvement in mental health research and practice does not exist in Egypt. Definitions of recovery from high‐income and English‐speaking countries should be carefully adapted to other settings. Nurses providing mental health care in Egypt generally do not have specialized mental health nursing qualifications. Both cultural and contextual uniqueness of Egypt as a Middle Eastern, low‐middle‐income country were clear in the findings of this paper. There are differences in the definition of family and service user engagement in the current study and in high‐income countries. Seeking faith healers as a barrier to mental health recovery is culturally unique. Functional recovery prevails as a model in Egypt as there is limited service user involvement. Nursing values and code of ethics are consistent with enablers of mental health recovery. Changing the pre‐registration nursing education to prepare specialized graduates in mental health nursing. Training of mental health professionals on recovery approaches which involve service users is needed in Egypt. Mental health nurses in Egypt can use the current findings to implement national c aigns to raise public awareness of mental health problems. Recovery‐oriented mental health practice is an emerging approach that aims to empower in iduals to define their goals and take responsibility for their own recovery. However, mental health practice in Egypt is still custodial. To explore perspectives of Egyptian mental health professionals on recovery. Semi‐structured interviews were conducted with 15 mental health professionals identified through snowball s ling. The current study identified that functional recovery outweighed other definitions. Four facilitators of mental health recovery were identified: therapeutic relationship family engagement cultural sensitivity and professionals’ self‐awareness. Six barriers to recovery were found, comprising mental health stigma and lack of awareness, seeking traditional healers, shortage of psychiatrists, cost of treatment, lack of training and effective rehabilitation programs. The concept of functional recovery predominates among nurses and other mental health professionals, which may be due to limited training and the historical lack of service user involvement in Egypt. Lack of support from family and society, inadequate training MHPs and perceived system inefficiencies are also major impeding factors for recovery. There is a need for nurses to be involved in designing intervention programs targeting the general public and to support increased involvement of people with mental health issues.
Publisher: SAGE Publications
Date: 06-07-2017
Abstract: Personality disorders have received limited recognition as a public health priority, despite the publication of treatment guidelines and reviews showing effective treatments are available. Inclusive approaches to understanding and servicing personality disorder are required that integrate different service providers. This viewpoint paper identifies pertinent issues surrounding early intervention, treatment needs, consumer and carer experiences, and the need for accurate and representative data collection in personality disorder as starting points in mental health care reform.
Publisher: Public Library of Science (PLoS)
Date: 04-05-2022
DOI: 10.1371/JOURNAL.PONE.0266722
Abstract: Content and trigger warnings give information about the content of material prior to receiving it. Different typologies of content warnings have emerged across multiple sectors, including health, social media, education and entertainment. Benefits arising from their use are contested, with recent empirical evidence from educational sectors suggesting they may raise anxiety and reinforce the centrality of trauma experience to identity, whilst benefits relate to increased in idual agency in making informed decisions about engaging with content. Research is h ered by the absence of a shared inter-sectoral typology of warnings. The aims of this systematic review are to develop a typology of content warnings and to identify the contexts in which content warnings are used. The review was pre-registered (ID: CRD42020197687, URL: www.crd.york.ac.uk rospero/display_record.php?ID=CRD42020197687 ) and used five sources: electronic databases covering multiple sectors (n = 19) table of contents from multi-sectoral journals (n = 5), traditional and social media websites (n = 53 spanning 36 countries) forward and backward citation tracking and expert consultation (n = 15). In total, 6,254 documents were reviewed for eligibility and 136 documents from 32 countries were included. These were synthesised to develop the Narrative Experiences Online (NEON) content warning typology, which comprises 14 domains: Violence, Sex, Stigma, Disturbing content, Language, Risky behaviours, Mental health, Death, Parental guidance, Crime, Abuse, Socio-political, Flashing lights and Objects. Ten sectors were identified: Education, Audio-visual industries, Games and Apps, Media studies, Social sciences, Comic books, Social media, Music, Mental health, and Science and Technology. Presentation formats (n = 15) comprised: education materials, film, games, websites, television, books, social media, verbally, print media, apps, radio, music, research, DVD/video and policy document. The NEON content warning typology provides a framework for consistent warning use and specification of key contextual information (sector, presentation format, target audience) in future content warning research, allowing personalisation of content warnings and investigation of global sociopolitical trends over time.
Publisher: MDPI AG
Date: 12-06-2023
Abstract: Healthcare professionals’ wellbeing can be adversely affected by the intense demands of, and the secondary traumatic stress associated with, their job. Self-compassion is associated with positive wellbeing outcomes across a variety of workforce populations and is potentially an important skill for healthcare workers, as it offers a way of meeting one’s own distress with kindness and understanding. This systematic review aimed to synthesise and evaluate the utility of self-compassion interventions in reducing secondary traumatic stress in a healthcare worker population. Eligible articles were identified from research databases, including ProQuest, PsycINFO, ScienceDirect, Google Scholar, and EBSCO. The quality of non-randomised and randomised trials was assessed using the Newcastle–Ottawa Scale. The literature search yielded 234 titles, from which 6 studies met the inclusion criteria. Four studies reported promising effects of self-compassion training for secondary traumatic stress in a healthcare population, although these did not use controls. The methodological quality of these studies was medium. This highlights a research gap in this area. Three of these four studies recruited workers from Western countries and one recruited from a non-Western country. The Professional Quality of Life Scale was used to evaluate secondary traumatic stress in all studies. The findings show preliminary evidence that self-compassion training may improve secondary traumatic stress in healthcare professional populations however, there is a need for greater methodological quality in this field and controlled trials. The findings also show that the majority of research was conducted in Western countries. Future research should focus on a broader range of geographical locations to include non-Western countries.
Publisher: Springer Science and Business Media LLC
Date: 15-09-2020
DOI: 10.1186/S43045-020-00047-8
Abstract: Adaptive behaviour among children diagnosed with autism spectrum disorder determines wide range of self-independent and autonomous activities. Adaptive behaviour is a clearly defined measurable variable that can be used as an outcome, hence impacts intervention and training programs. The current study aims to determine the socio-economic and demographic factors that are associated with adaptive behaviour among children diagnosed with autism spectrum disorder in Egypt. In this observational cross sectional study, caregivers’ reports on their children with a confirmed diagnosis of autism spectrum were obtained. Vineland Adaptive Behaviour Scale was used to assess adaptive behaviour among children aged 3–6 years and admitting at the outpatient clinic. Socioeconomic Status Scale was used to assess family socioeconomic status. Participants in the current study scored low in domains of adaptive behaviour. Older children scored low in adaptive behaviour compared to younger children. There was significant positive correlation between daily living activities subdomain of adaptive behaviour and education, occupation, family possessions, and home sanitation and health care domains of socioeconomic status scale. There were significant positive correlations between socialization subdomain of adaptive behaviour and education, occupation, family, and family possessions and home sanitation domains of the socioeconomic status scale. The motor functioning subdomain of adaptive behaviour correlates significantly with the following SES domains: education ( r = .268), occupation ( r = .274), family possessions ( r = .232), economic ( r = .195) and health care ( r = .291). Results of the current study revealed that high socioeconomic status correlates with higher adaptive functioning in daily living skills, socialisation and motor skills domains of adaptive behaviour. The correlations detected in the current study between adaptive behaviour and some social determinants of health can influence stakeholders’ decisions in planning and implementation of autism specific interventions.
Publisher: Wiley
Date: 08-06-2020
DOI: 10.1002/PMH.1485
Publisher: Informa UK Limited
Date: 05-01-2022
DOI: 10.1080/09638237.2021.2022627
Abstract: Mental health recovery narratives are an active ingredient of recovery-oriented interventions such as peer support. Recovery narratives can create connection and hope, but there is limited evidence on the predictors of impact. The aim of this study was to identify characteristics of the narrator, narrative content and participant which predict the short-term impact of recovery narratives on participants. Independent studies were conducted in an experimental ( The experimental study found that narratives portraying a narrator as living well with mental health problems that is intermediate between no and full recovery, generated higher self-rated levels of hopefulness. Participants from ethnic minority backgrounds had lower levels of connection with narrators compared to participants from a white background, potentially due to reduced visibility of a narrator's ersity characteristics. Narratives describing partial but not complete recovery and matching on ethnicity may lead to a higher impact. Having access to narratives portraying a range of narrator characteristics to maximise the possibility of a beneficial impact on connection and hopefulness.
Publisher: Informa UK Limited
Date: 12-04-2022
Publisher: Springer Science and Business Media LLC
Date: 12-04-2022
DOI: 10.1186/S12888-022-03919-X
Abstract: Delivery of recovery-oriented mental health practice is fundamental to personal recovery. Yet, there is lack of service users’ accounts on what constitutes mental health recovery in Egypt. The aim of this study was to explore mental health recovery meaning informed by people with personal experience of recovery. A phenomenological research design was used. Semi-structured qualitative interviews were conducted with 17 adult community-dwelling in iduals who identified as recovered/recovering from mental health issues. An inductive thematic analysis approach was used to analyses participants’ responses. Participants predominately reported personal and functional definitions of mental health recovery. Posttraumatic growth was the strongest theme comprising: relation to others, spirituality, new possibilities, identity & strengths, and appreciation of life. Themes of acceptance and forgiveness, functional and clinical recovery, and finding hope were also identified. This is the first study to explore mental health recovery meaning among a s le of people with lived experience of mental health issues in Egypt. Findings suggest that developing and implementing psychosocial interventions to support posttraumatic growth among people with mental health issues is a priority.
Publisher: JMIR Publications Inc.
Date: 20-09-2019
Abstract: ollections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections. his study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions. preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation s le of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison. he final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified. he VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.
Publisher: Springer Science and Business Media LLC
Date: 12-2019
DOI: 10.1186/S12888-019-2405-Z
Abstract: Mental health recovery narratives are a core component of recovery-oriented interventions such as peer support and anti-stigma c aigns. A substantial number of recorded recovery narratives are now publicly available online in different modalities and in published books. Whilst the benefits of telling one’s story have been investigated, much less is known about how recorded narratives of differing modalities impact on recipients. A previous qualitative study identified connection to the narrator and/or to events in the narrative to be a core mechanism of change. The factors that influence how in iduals connect with a recorded narrative are unknown. The aim of the current study was to characterise the immediate effects of receiving recovery narratives presented in a range of modalities (text, video and audio), by establishing the mechanisms of connection and the processes by which connection leads to outcomes. A study involving 40 mental health service users in England was conducted. Participants were presented with up to 10 randomly-selected recovery narratives and were interviewed on the immediate impact of each narrative. Thematic analysis was used to identify the mechanisms of connection and how connection leads to outcome. Receiving a recovery narrative led participants to reflect upon their own experiences or those of others, which then led to connection through three mechanisms: comparing oneself with the narrative and narrator learning about other’s experiences and experiencing empathy. These mechanisms led to outcomes through three processes: the identification of change (through attending to narrative structure) the interpretation of change (through attending to narrative content) and the internalisation of interpretations. This is the first study to identify mechanisms and processes of connection with recorded recovery narratives. The empirically-based causal chain model developed in this study describes the immediate effects on recipients. This model can inform selection of narratives for use in interventions, and be used to support peer support workers in recounting their own recovery narratives in ways which are maximally beneficial to others.
Publisher: SLACK, Inc.
Date: 2022
DOI: 10.3928/02793695-20210623-04
Abstract: Effective nursing practice is linked to a nurse's ability to regulate emotions and effectively communicate with patients. Novice nurses can feel unprepared when approaching in iduals with psychosis who show aggressive behaviors. The current descriptive correlational study aimed to examine relationships among novice nurses' emotional regulation (ER) capacity, length of service, and communication skills, and investigate the predictive capacity of ER on communication skills in dealing with aggression among in iduals with psychosis. A convenience s le of 133 novice nurses was obtained. Nurses who had been working for 19 to 24 months demonstrated significantly higher overall communication skills than those who had been working for 12 to 18 months and those who had been working months (mean = 45.05 [ SD = 10.89], mean = 41.43 [ SD = 12.16], and mean = 38.44 [ SD = 9.33], respectively p = 0.03). In addition, a strong positive correlation was detected between ER strategies and communication skills. ER strategies were identified as independent precursors of novice nurses' communication skills. Incorporating ER and communication skills training in mental health nursing curricula is recommended. [ Journal of Psychosocial Nursing and Mental Health Services, 60 (1), 23–30.]
Publisher: Public Library of Science (PLoS)
Date: 16-04-2021
DOI: 10.1371/JOURNAL.PONE.0250367
Abstract: Institutional injustice refers to structures that create disparities in resources, opportunities and representation. Marginalised people experience institutional injustice, inequalities and discrimination through intersecting personal characteristics and social circumstances. This study aimed to investigate sources of institutional injustice and their effects on marginalised people with experience of mental health problems. Semi-structured interviews were conducted with 77 in iduals from marginalised groups with experience of mental health problems, including psychosis, Black, Asian and minority ethnic (BAME) populations, complex needs and lived experience as a work requirement. These were analysed inductively enabling sensitising concepts to emerge. Three processes of institutional injustice were identified: not being believed because of social status and personal backgrounds not being heard where narratives did not align with dominant discourses, and not being acknowledged where aspects of identity were disregarded. Harmful outcomes included disengagement from formal institutions through fear and mistrust, tensions and reduced affiliation with informal institutions when trying to consolidate new ways of being, and damaging impacts on mental health and wellbeing through multiple oppression. Institutional injustice perpetuates health inequalities and marginalised status. Master status, arising from dominant discourses and heuristic bias, overshadow the narratives and experiences of marginalised people. Cultural competency has the potential to improve heuristic availability through social understandings of narrative and experience, whilst coproduction and narrative development through approaches such as communities of practice might offer meaningful avenues for authentic expression.
Publisher: JMIR Publications Inc.
Date: 18-09-2020
DOI: 10.2196/16290
Abstract: Collections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections. This study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions. A preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation s le of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison. The final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified. The VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.
Publisher: Frontiers Media SA
Date: 07-11-2022
DOI: 10.3389/FPSYT.2022.1028156
Abstract: The increasing development and use of digital health interventions requires good quality costing information to inform development and commissioning choices about resource allocation decisions. The Narrative Experiences Online (NEON) Intervention is a web-application that delivers recorded mental health recovery narratives to its users. Two randomized controlled trials are testing the NEON Intervention in people with experience of psychosis (NEON) and people experiencing non-psychosis mental health problems (NEON-O). This study describes and estimates the cost components and total cost of developing and delivering the NEON Intervention. Total costs for the NEON Trial (739 participants) and NEON-O Trial (1,024 participants) were estimated by: identifying resource use categories involved in intervention development and delivery accurate measurement or estimation of resource use and a valuation of resource use to generate overall costs, using relevant unit costs. Resource use categories were identified through consultation with literature, costing reporting standards and iterative consultation with health researchers involved in NEON Intervention development and delivery. Sensitivity analysis was used to test assumptions made. The total cost of developing the NEON Intervention was £182,851. The largest cost components were software development (27%) Lived Experience Advisory Panel workshops (23%) coding the narratives (9%) and researchers' time to source narratives (9%). The total cost of NEON Intervention delivery during the NEON Trial was £118,663 (£349 per NEON Intervention user). In the NEON-O Trial, the total delivery cost of the NEON Intervention was £123,444 (£241 per NEON Intervention user). The largest cost components include updating the narrative collection (50%) advertising (19%) administration (14%) and software maintenance (11%). Uncertainty in the cost of administration had the largest effect on delivery cost estimates. Our work shows that developing and delivering a digital health intervention requires expertise and time commitment from a range of personnel. Teams developing digital narrative interventions need to allocate substantial resources to curating narrative collections. This study identifies the development and delivery resource use categories of a digital health intervention to promote the consistent reporting of costs and informs future decision-making about the costs of delivering the NEON Intervention at scale. NEON Trial: ISRCTN11152837, registered 13 August 2018, www.isrctn.com/ISRCTN11152837 . NEON-O Trial: ISRCTN63197153, registered 9 January 2020, www.isrctn.com/ISRCTN63197153 .
Publisher: Springer Science and Business Media LLC
Date: 28-10-2022
DOI: 10.1186/S12888-022-04319-X
Abstract: The experience s ling method (ESM) is an intensive longitudinal research method. Participants complete questionnaires at multiple times about their current or very recent state. The design of ESM studies is complex. People with psychosis have been shown to be less adherent to ESM study protocols than the general population. It is not known how to design studies that increase adherence to study protocols. A lack of typology makes it is hard for researchers to decide how to collect data in a way that allows for methodological rigour, quality of reporting, and the ability to synthesise findings. The aims of this systematic review were to characterise the design choices made in ESM studies monitoring the daily lives of people with psychosis, and to synthesise evidence relating the data completeness to different design choices. A systematic review was conducted of published literature on studies using ESM with people with psychosis. Studies were included if they used digital technology for data collection and reported the completeness of the data set. The constant comparative method was used to identify design decisions, using inductive identification of design decisions with simultaneous comparison of design decisions observed. Weighted regression was used to identify design decisions that predicted data completeness. The review was pre-registered (PROSPERO CRD42019125545). Thirty-eight studies were included. A typology of design choices used in ESM studies was developed, which comprised three superordinate categories of design choice: Study context, ESM approach and ESM implementation. Design decisions that predict data completeness include type of ESM protocol used, length of time participants are enrolled in the study, and if there is contact with the research team during data collection. This review identified a range of design decisions used in studies using ESM in the context of psychosis. Design decisions that influence data completeness were identified. Findings will help the design and reporting of future ESM studies. Results are presented with the focus on psychosis, but the findings can be applied across different mental health populations.
Publisher: Frontiers Media SA
Date: 30-10-2020
Publisher: Springer Science and Business Media LLC
Date: 12-2021
DOI: 10.1186/S12888-021-03614-3
Abstract: People with psychosis report experiences of highly traumatic events. Positive change or post-traumatic growth (PTG) can occur as a result of traumatic experiences. Yet there is limited attention on PTG in psychosis, possibly due to the negative impact of psychotic symptoms on functioning and quality of life. The aim of this review was to identify significant correlates and mediators of PTG in psychosis, and to develop a conceptual framework synthesising facilitators of PTG in psychosis. Ten electronic databases were searched in seven languages, and five journals and grey literature were searched in English. Quantitative studies were eligible if examining correlates, mediators, or the temporal relationship between PTG and one or more variables. Qualitative studies were eligible if describing PTG arising from experiences of psychosis. Findings from quantitative papers were grouped by analysis method, with significant correlates, mediators, and temporal relationships descriptively reported upon. Narrative synthesis was conducted on findings in qualitative papers. Thirty-seven papers were included. Significant correlates and mediators of PTG were identified. Mediators of PTG in psychosis included meaning in life, coping self-efficacy, core beliefs, and self-reported recovery. No studies describing the temporal relationship between PTG and psychosis were identified. The narrative synthesis identified seven facilitators of PTG in psychosis: Personal identity and strength, Receiving support, Opportunities and possibilities, Strategies for coping, Perspective shift, Emotional experience, and Relationships, giving the acronym PROSPER. In iduals with psychosis can be supported to grow from traumatic experiences. Clinicians can support PTG through the provision of trauma-informed care that supports positively valued identity changes. For researchers, the findings provide an evidence-based theoretical framework for conceptualising PTG, which can be validated through longitudinal cohort studies and underpin the development of new clinical interventions.
Publisher: JMIR Publications Inc.
Date: 20-09-2020
Abstract: he internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing i recovery /i from health problems are a focus of research, including those presented in i recorded /i (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). his study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. nowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. I1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on in idual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. RNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.
Publisher: JMIR Publications Inc.
Date: 27-05-2021
DOI: 10.2196/24417
Abstract: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on in idual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.
Publisher: JMIR Publications Inc.
Date: 27-06-2023
DOI: 10.2196/44687
Abstract: Digital health interventions (DHIs) are an established element of mental health service provision internationally. Regulators have positioned the best practice standard of evidence as an interventional study with a comparator reflective of standard care, often operationalized as a pragmatic trial. DHIs can extend health provision to those not currently using mental health services. Hence, for external validity, trials might openly recruit a mixture of people who have used mental health services and people who have not. Prior research has demonstrated phenomenological differences in mental health experience between these groups. Some differences between service users and nonservice users might influence the change created by DHIs hence, research should systematically examine these differences to inform intervention development and evaluation work. This paper analyzes baseline data collected in the NEON (Narrative Experiences Online ie, for people with experience of psychosis) and NEON-O (NEON for other [eg, nonpsychosis] mental health problems) trials. These were pragmatic trials of a DHI that openly recruited people who had used specialist mental health services and those who had not. All participants were experiencing mental health distress. NEON Trial participants had experienced psychosis in the previous 5 years. This study aims to identify differences in baseline sociodemographic and clinical characteristics associated with specialist mental health service use for NEON Trial and NEON-O Trial participants. For both trials, hypothesis testing was used to compare baseline sociodemographic and clinical characteristics of participants in the intention-to-treat s le who had used specialist mental health services and those who had not. Bonferroni correction was applied to significance thresholds to account for multiple testing. Significant differences in characteristics were identified in both trials. Compared with nonservice users (124/739, 16.8%), NEON Trial specialist service users (609/739, 82.4%) were more likely to be female (P .001), older (P .001), and White British (P .001), with lower quality of life (P .001) and lower health status (P=.002). There were differences in geographical distribution (P .001), employment (P .001 more unemployment), current mental health problems (P .001 more psychosis and personality disorders), and recovery status (P .001 more recovered). Current service users were more likely to be experiencing psychosis than prior service users. Compared with nonservice users (399/1023, 39%), NEON-O Trial specialist service users (614/1023, 60.02%) had differences in employment (P .001 more unemployment) and current mental health problems (P .001 more personality disorders), with lower quality of life (P .001), more distress (P .001), less hope (P .001), less empowerment (P .001), less meaning in life (P .001), and lower health status (P .001). Mental health service use history was associated with numerous differences in baseline characteristics. Investigators should account for service use in work to develop and evaluate interventions for populations with mixed service use histories. RR2-10.1186/s13063-020-04428-6
Publisher: JMIR Publications Inc.
Date: 25-11-2022
Abstract: emand for digital health interventions is increasing in many countries. The use of recorded mental health recovery narratives in digital health interventions is becoming more widespread in clinical practice. Mental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, including struggles and successes over time. Helpful impacts of recorded mental health recovery narratives include connectedness with the narrative and validation of experiences. Possible harms include feeling disconnected and excluded from others. Diverse narrative collections from many types of narrators and describing multiple ways to recover are important to maximize the opportunity for service users to benefit through connection and to minimize the likelihood of harm. Mental health clinicians need to know whether narrative collections are sufficiently erse to recommend to service users. However, no method exists for assessing the ersity and inclusivity of existing or new narrative collections. We argue that assessing ersity and inclusivity is the next frontier in mental health recovery narrative research and practice. This is important, but methodologically and ethically complex. In this viewpoint, we propose and evaluate one ersity and two inclusivity assessment methods. The ersity assessment method involves use of the Simpson Diversity Index. The two inclusivity assessment methods are based on comparator demographic rates and arbitrary thresholds, respectively. These methods were applied to four narrative collections as a case study. Refinements are needed regarding a narrative assessment tool in terms of its practicality and cultural adaptation.
Publisher: JMIR Publications Inc.
Date: 17-04-2023
DOI: 10.2196/44601
Abstract: Demand for digital health interventions is increasing in many countries. The use of recorded mental health recovery narratives in digital health interventions is becoming more widespread in clinical practice. Mental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, including struggles and successes over time. Helpful impacts of recorded mental health recovery narratives include connectedness with the narrative and validation of experiences. Possible harms include feeling disconnected and excluded from others. Diverse narrative collections from many types of narrators and describing multiple ways to recover are important to maximize the opportunity for service users to benefit through connection and to minimize the likelihood of harm. Mental health clinicians need to know whether narrative collections are sufficiently erse to recommend to service users. However, no method exists for assessing the ersity and inclusivity of existing or new narrative collections. We argue that assessing ersity and inclusivity is the next frontier in mental health recovery narrative research and practice. This is important, but methodologically and ethically complex. In this viewpoint, we propose and evaluate one ersity and two inclusivity assessment methods. The ersity assessment method involves use of the Simpson Diversity Index. The two inclusivity assessment methods are based on comparator demographic rates and arbitrary thresholds, respectively. These methods were applied to four narrative collections as a case study. Refinements are needed regarding a narrative assessment tool in terms of its practicality and cultural adaptation.
Publisher: JMIR Publications Inc.
Date: 29-11-2022
Abstract: igital health interventions (DHIs) are an established element of mental health service provision internationally. Regulators have positioned the best practice standard of evidence as an interventional study with a comparator reflective of standard care, often operationalized as a pragmatic trial. DHIs can extend health provision to those not currently using mental health services. Hence, for external validity, trials might openly recruit a mixture of people who have used mental health services and people who have not. Prior research has demonstrated phenomenological differences in mental health experience between these groups. Some differences between service users and nonservice users might influence the change created by DHIs hence, research should systematically examine these differences to inform intervention development and evaluation work. This paper analyzes baseline data collected in the NEON (Narrative Experiences Online ie, for people with experience of psychosis) and NEON-O (NEON for other [eg, nonpsychosis] mental health problems) trials. These were pragmatic trials of a DHI that openly recruited people who had used specialist mental health services and those who had not. All participants were experiencing mental health distress. NEON Trial participants had experienced psychosis in the previous 5 years. his study aims to identify differences in baseline sociodemographic and clinical characteristics associated with specialist mental health service use for NEON Trial and NEON-O Trial participants. or both trials, hypothesis testing was used to compare baseline sociodemographic and clinical characteristics of participants in the intention-to-treat s le who had used specialist mental health services and those who had not. Bonferroni correction was applied to significance thresholds to account for multiple testing. ignificant differences in characteristics were identified in both trials. Compared with nonservice users (124/739, 16.8%), NEON Trial specialist service users (609/739, 82.4%) were more likely to be female ( i P /i & .001), older ( i P /i & .001), and White British ( i P /i & .001), with lower quality of life ( i P /i & .001) and lower health status ( i P /i =.002). There were differences in geographical distribution ( i P /i & .001), employment ( i P /i & .001 more unemployment), current mental health problems ( i P /i & .001 more psychosis and personality disorders), and recovery status ( i P /i & .001 more recovered). Current service users were more likely to be experiencing psychosis than prior service users. Compared with nonservice users (399/1023, 39%), NEON-O Trial specialist service users (614/1023, 60.02%) had differences in employment ( i P /i & .001 more unemployment) and current mental health problems ( i P /i & .001 more personality disorders), with lower quality of life ( i P /i & .001), more distress ( i P /i & .001), less hope ( i P /i & .001), less empowerment ( i P /i & .001), less meaning in life ( i P /i & .001), and lower health status ( i P /i & .001). ental health service use history was associated with numerous differences in baseline characteristics. Investigators should account for service use in work to develop and evaluate interventions for populations with mixed service use histories. > R2-10.1186/s13063-020-04428-6
Publisher: Public Library of Science (PLoS)
Date: 09-08-2016
Publisher: Informa UK Limited
Date: 22-04-2014
DOI: 10.1080/07399332.2014.896364
Abstract: Women's experiences with metastatic breast cancer have received little research attention. We reviewed published articles (1984-2013) reporting research examining women's experiences of metastatic breast cancer (n = 33). Findings from quantitative studies were categorized into three broad areas: adverse consequences, satisfaction with health care providers, and strategies for living. Themes identified from qualitative findings include living as a social outsider importance of hope health and quality of life positive experiences experiences at end of life and strategies for living. More research is needed to explore experiences of subgroups to appropriately respond to women's erse care needs.
Publisher: Springer Science and Business Media LLC
Date: 20-05-2023
DOI: 10.1186/S13063-023-07246-8
Abstract: Mental health recovery narratives are a first-hand account of an in idual’s recovery from mental health distress, access to narratives can aid recovery. The NEON Intervention is a web-application providing access to a managed collection of narratives. We present the statistical analysis plan for assessing the effectiveness of the NEON Intervention in improving quality of life at 1-year post-randomisation. We pay particular focus on the statistical challenges encountered due to the online nature of this trial. The NEON Intervention is assessed in two trial populations, one for people with experience of psychosis in the last 5 years, and mental health distress in the last six months (NEON Trial) and one for people with experience of non-psychosis mental health problems (NEON-O Trial). Both NEON trials are two-arm randomised controlled superiority trials comparing the effectiveness of the NEON Intervention with usual care. The target s le size is 684 randomised participants for NEON and 994 for NEON-O. Participants were randomised centrally in a 1:1 ratio. The primary outcome is the mean score of subjective items on the Manchester Short Assessment of Quality-of-Life questionnaire (MANSA) at 52 weeks. Secondary outcomes are scores from the Herth Hope Index, Mental Health Confidence Scale, Meaning of Life questionnaire, CORE-10 questionnaire and Euroqol 5-Dimension 5-Level (EQ-5D-5L). This manuscript is the statistical analysis plan (SAP) for the NEON trials. Any post hoc analysis, such as those requested by journal reviewers will be clearly labelled as such in the final trial reporting. Trial registration Both trials were prospectively registered. NEON Trial: ISRCTN11152837, registered on 13 August 2018. NEON-O Trial: ISRCTN63197153, registered on 9 January 2020.
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Fiona Ng.