Relatives Education And Coping Toolkit Research Articles

Caring for a Family Member with Psychosis or Bipolar Disorder Who Has Experienced Suicidal Behaviour: An Exploratory Qualitative Study of an Online Peer-Support Forum.

The likelihood of suicidal behaviour is elevated amongst people with psychosis or bipolar disorder. This study aimed to understand how carers experience supporting family members with psychosis or bipolar disorder who have also experienced suicidal behaviour. A qualitative thematic analysis of online peer forum posts was carried out on the Relatives Education and Coping Toolkit (REACT) website, an online intervention for carers of people with psychosis and bipolar disorder. Analysis was based on 178 posts by 29 forum users. Posts were selected based on their relevance to suicidal behaviour. Three themes were generated. "Suicide as the ultimate threat" highlights fears emerging from carers' difficulties with understanding and managing suicidal behaviour. "Bouncing from one crisis to another" reflects carers' experiences of recurring crises and the challenges of relying on emergency healthcare support. "It definitely needs to be easier to get help" emphasises carers' desires to be acknowledged by healthcare professionals and included in support offered to service users. Digital platforms, including online forums, brief interventions such as safety planning, and interagency crisis models, hold the potential to meet carers' needs in this context. However, further research is required to investigate the effectiveness and implementation of these approaches.

Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study.

Relatives of people with psychosis or bipolar disorder experience high levels of distress but are typically not offered the support they need. Online peer forums may offer a solution, but knowledge about who uses them, how, and why is limited. This study reported on online forum use during the Relatives Education and Coping Toolkit (REACT) trial. We aimed to report who used the forum and why; how sociodemographic factors are associated with participation; the relationship among frequency, type of use, and outcomes; and how the forum was used. The relationships between key sociodemographic characteristics, levels of forum use, and distress were statistically analyzed. We used thematic and semantic analyses to understand the reasons for relatives joining the forum and the key topics initiated by them. We also used the University Centre for Computer Corpus Research on Language Semantic Analysis System to compare how relatives and REACT supporters (moderators) used the forum. A total of 348 participants with full forum use data from REACT were included in this study. The forum was accessed by 59.4% (207/348) of the relatives across the entire age range, with no significant associations between sociodemographic factors and forum participation, or between level or type of use and relatives' distress levels. Relatives joined the forum primarily to find people in similar circumstances, express concerns, and talk about stressful events. Relatives were most concerned about recent events, negative emotions linked to caring, experiences of conflict or threat, and concerns about suicide. These posts underscored both the challenges the relatives were facing and the fact that they felt safe sharing them in this context. Although only a proportion of REACT participants engaged actively with its forum, they were widely distributed across age and other sociodemographic groupings. Relatives used the forum for information, support, and guidance and to offer detailed information about their experiences. The topics raised highlighted the burden carried by relatives and the potential value of easy-access, moderated, peer-supported forums in helping relatives to manage the challenges they faced.

An online supported self-management toolkit for relatives of people with psychosis or bipolar experiences: the IMPART multiple case study

Background Digital health interventions have the potential to improve the delivery of psychoeducation to people with mental health problems and their relatives. Despite substantial investment in the development of digital health interventions, successful implementation into routine clinical practice is rare. Objectives Use the implementation of the Relatives’ Education And Coping Toolkit (REACT) for psychosis/bipolar disorder to identify critical factors affecting uptake and use, and develop an implementation plan to support the delivery of REACT. Design This was an implementation study using a mixed-methods, theory-driven, multiple case study approach. A study-specific implementation theory for REACT based on normalisation process theory was developed and tested, and iterations of an implementation plan to address the key factors affecting implementation were developed. Setting Early-intervention teams in six NHS mental health trusts in England (three in the north and three in the south). Participants In total, 281 staff accounts and 159 relatives’ accounts were created, 129 staff and 23 relatives took part in qualitative interviews about their experiences, and 132 relatives provided demographic data, 56 provided baseline data, 21 provided data at 12 weeks’ follow-up and 20 provided data at 24 weeks’ follow-up. Interventions REACT is an online supported self-management toolkit, offering 12 evidence-based psychoeducation modules and support via a forum, and a confidential direct messaging service for relatives of people with psychosis or bipolar disorder. The implementation intervention was developed with staff and iteratively adapted to address identified barriers. Adaptations included modifications to the toolkit and how it was delivered by teams. Main outcome measures The main outcome was factors affecting implementation of REACT, assessed primarily through in-depth interviews with staff and relatives. We also assessed quantitative measures of delivery (staff accounts and relatives’ invitations), use of REACT (relatives’ logins and time spent on the website) and the impact of REACT [relatives’ distress (General Health Questionnaire-28), and carer well-being and support (Carer Well-being and Support Scale questionnaire)]. Results Staff and relatives were generally positive about the content of REACT, seeing it as a valuable resource that could help services improve support and meet clinical targets, but only within a comprehensive service that included face-to-face support, and with some additional content. Barriers to implementation included high staff caseloads and difficulties with prioritising supporting relatives; technical difficulties of using REACT; poor interoperability with trust information technology systems and care pathways; lack of access to mobile technology and information technology training; restricted forum populations leading to low levels of use; staff fears of managing risk, online trolling, or replacement by technology; and uncertainty around REACT’s long-term availability. There was no evidence that REACT would reduce staff time supporting relatives (which was already very low), and might increase it by facilitating communication. In all, 281 staff accounts were created, but only 57 staff sent relatives invitations. In total, 355 relatives’ invitations were sent to 310 unique relatives, leading to the creation of 159 relatives’ accounts. The mean number of logins for relatives was 3.78 (standard deviation 4.43), but with wide variation from 0 to 31 (median 2, interquartile range 1–8). The mean total time spent on the website was 40.6 minutes (standard deviation 54.54 minutes), with a range of 0–298 minutes (median 20.1 minutes, interquartile range 4.9–57.5 minutes). There was a pattern of declining mean scores for distress, social dysfunction, depression, anxiety and insomnia, and increases in relatives’ well-being and eHealth literacy, but no changes were statistically significant. Conclusions Digital health interventions, such as REACT, should be iteratively developed, evaluated, adapted and implemented, with staff and service user input, as part of a long-term strategy to develop integrated technology-enabled services. Implementation strategies must instil a sense of ownership for staff and ensure that they have adequate training, risk protocols and resources to deliver the technology. Cost-effectiveness and impact on workload and inequalities in accessing health care need further testing, along with the generalisability of our findings to other digital health interventions. Limitations REACT was offered by the same team running the IMPlementation of A Relatives’ Toolkit (IMPART) study, and was perceived by staff and relatives as a time-limited research study rather than ongoing clinical service, which affected engagement. Access to observational data was limited. Trial registration Current Controlled Trials ISRCTN16267685. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 37. See the NIHR Journals Library website for further project information.

Remote Care for Caregivers of People With Psychosis: Mixed Methods Pilot Study.

BackgroundA reduced availability of resources has hampered the implementation of family work in psychosis. Web-based support programs have the potential to increase access to high-quality, standardized resources. This pilot study tested the Norwegian version of the Relatives Education and Coping Toolkit (REACT), a web-based United Kingdom National Health Service program in combination with phone-based support by trained family therapists.ObjectiveWe investigated how the program was perceived by its users and identified the facilitators and barriers to its clinical implementation.MethodsRelatives of people with psychosis were offered access to REACT and to weekly family therapist support (with 1 of 2 trained family therapists) for 26 weeks. Level of distress and level of expressed emotion data were collected at baseline and after 26 weeks using the Family Questionnaire and the Relatives Stress Scale. Both family therapists and a subset of the relatives were interviewed about their experiences after completing the program.ResultsDuring the program, relatives (n=19) had a median of 8 (range 4-11) consultations with the family therapists. Postintervention, there was a significant reduction in stress and in expressed emotions in the relatives of people with psychosis. Interviews with the relatives (n=7) and the family therapists (n=2) indicated the following themes as important—the intervention turned knowledge into action; the intervention strengthened the feeling of being involved and taken seriously by the health services; and management support and the ability for self-referral were important, while lack of reimbursement and clinician resistance to technology were barriers to implementation.ConclusionsThe service was found to offer a valued clinical benefit; however, strategies that aim to engage clinicians and increase organizational support toward new technology need to be developed.

A web-based, peer-supported self-management intervention to reduce distress in relatives of people with psychosis or bipolar disorder: the REACT RCT.

Relatives caring for people with severe mental health problems find information and emotional support hard to access. Online support for self-management offers a potential solution. The objective was to determine the clinical effectiveness and cost-effectiveness of an online supported self-management tool for relatives: the Relatives' Education And Coping Toolkit (REACT). This was a primarily online (UK), single-blind, randomised controlled trial, comparing REACT plus a resource directory and treatment as usual with the resource directory and treatment as usual only, by measuring user distress and other well-being measures at baseline and at 12 and 24 weeks. A total of 800 relatives of people with severe mental health problems across the UK took part; relatives who were aged ≥ 16 years, were experiencing high levels of distress, had access to the internet and were actively seeking help were recruited. REACT comprised 12 psychoeducation modules, peer support through a group forum, confidential messaging and a comprehensive resource directory of national support. Trained relatives moderated the forum and responded to messages. The main outcome was the level of participants' distress, as measured by the General Health Questionnaire-28 items. Various online and offline strategies, including social media, directed potential participants to the website. Participants were randomised to one of two arms: REACT plus the resource directory (n = 399) or the resource directory only (n = 401). Retention at 24 weeks was 75% (REACT arm, n = 292; resource directory-only arm, n = 307). The mean scores for the General Health Questionnaire-28 items reduced substantially across both arms over 24 weeks, from 40.2 (standard deviation 14.3) to 30.5 (standard deviation 15.6), with no significant difference between arms (mean difference -1.39, 95% confidence interval -3.60 to 0.83; p = 0.22). At 12 weeks, the General Health Questionnaire-28 items scores were lower in the REACT arm than in the resource directory-only arm (-2.08, 95% confidence interval -4.14 to -0.03; p = 0.027), but this finding is likely to be of limited clinical significance. Accounting for missing data, which were associated with higher distress in the REACT arm (0.33, 95% confidence interval -0.27 to 0.93; p = 0.279), in a longitudinal model, there was no significant difference between arms over 24 weeks (-0.56, 95% confidence interval -2.34 to 1.22; p = 0.51). REACT cost £142.95 per participant to design and deliver (£62.27 for delivery only), compared with £0.84 for the resource directory only. A health economic analysis of NHS, health and Personal Social Services outcomes found that REACT has higher costs (£286.77), slightly better General Health Questionnaire-28 items scores (incremental General Health Questionnaire-28 items score adjusted for baseline, age and gender: -1.152, 95% confidence interval -3.370 to 1.065) and slightly lower quality-adjusted life-year gains than the resource directory only; none of these differences was statistically significant. The median time spent online was 50.8 minutes (interquartile range 12.4-172.1 minutes) for REACT, with no significant association with outcome. Participants reported finding REACT a safe, confidential environment (96%) and reported feeling supported by the forum (89%) and the REACT supporters (86%). No serious adverse events were reported. The sample comprised predominantly white British females, 25% of participants were lost to follow-up and dropout in the REACT arm was not random. An online self-management support toolkit with a moderated group forum is acceptable to relatives and, compared with face-to-face programmes, offers inexpensive, safe delivery of National Institute for Health and Care Excellence-recommended support to engage relatives as peers in care delivery. However, currently, REACT plus the resource directory is no more effective at reducing relatives' distress than the resource directory only. Further research in improving the effectiveness of online carer support interventions is required. Current Controlled Trials ISRCTN72019945. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 32. See the NIHR Journals Library website for further project information.

Clinical effectiveness of a web-based peer-supported self-management intervention for relatives of people with psychosis or bipolar (REACT): online, observer-blind, randomised controlled superiority trial

BackgroundThe Relatives Education And Coping Toolkit (REACT) is an online supported self-management toolkit for relatives of people with psychosis or bipolar designed to improve access to NICE recommended information and emotional support.AimsOur aim was to determine clinical and cost-effectiveness of REACT including a Resource Directory (RD), versus RD-only.MethodsA primarily online, observer-blind randomised controlled trial comparing REACT (including RD) with RD only (registration ISRCTN72019945). Participants were UK relatives aged > = 16, with high distress (assessed using the GHQ-28), and actively help-seeking, individually randomised, and assessed online. Primary outcome was relatives’ distress (GHQ-28) at 24 weeks. Secondary outcomes were wellbeing, support, costs and user feedback.ResultsWe recruited 800 relatives (REACT = 399; RD only = 401) with high distress at baseline (GHQ-28 REACT mean 40.3, SD 14.6; RD only mean 40.0, SD 14.0). Median time spent online on REACT was 50.8 min (IQR 12.4–172.1) versus 0.5 min (IQR 0–1.6) on RD only. Retention to primary follow-up (24 weeks) was 75% (REACT n = 292 (73.2%); RD-only n = 307 (76.6%)). Distress decreased in both groups by 24 weeks, with no significant difference between the two groups (− 1.39, 95% CI -3.60, 0.83, p = 0.22). Estimated cost of delivering REACT was £62.27 per person and users reported finding it safe, acceptable and convenient. There were no adverse events or reported side effects.ConclusionsREACT is an inexpensive, acceptable, and safe way to deliver NICE-recommended support for relatives. However, for highly distressed relatives it is no more effective in reducing distress (GHQ-28) than a comprehensive online resource directory.Trial registrationISRCTN72019945 prospectively registered 19/11/2015.

IMPlementation of An online Relatives\u2019 Toolkit for psychosis or bipolar (IMPART study): iterative multiple case study to identify key factors impacting on staff uptake and use

BackgroundDespite the potential of digital health interventions to improve the delivery of psychoeducation to people with mental health problems and their relatives, and substantial investment in their development, there is little evidence of successful implementation into clinical practice. We report the first implementation study of a digital health intervention: Relatives Education And Coping Toolkit (REACT), into routine mental healthcare. Our main aim was to identify critical factors affecting staff uptake and use of this online self-management tool for relatives of people with psychosis or bipolar.MethodsA mixed-methods, theory-driven (Normalisation Process Theory), iterative multiple case study approach using qualitative analysis of interviews with staff and quantitative reporting of uptake. Carer researchers were part of the research team.ResultsIn all, 281 staff and 159 relatives from Early Intervention teams across six catchment areas (cases) in England registered on REACT; 129 staff took part in qualitative interviews. Staff were positive about REACT helping services improve support and meet clinical targets. Implementation was hindered by: high staff caseloads and difficulties prioritising carers; perception of REACT implementation as research; technical difficulties using REACT; poor interoperability with trust computer systems and care pathways; lack of access to mobile technology and training; restricted forum populations; staff fears of risk, online trolling, and replacement by technology; and uncertainty around REACT’s long-term availability.ConclusionsDigital health interventions, such as REACT, should be iteratively developed, evaluated, adapted and implemented, in partnership with the services they aim to support, and as part of a long term national strategy to co-develop integrated technology-enabled mental healthcare. Implementation strategies must instil a sense of ownership for staff and ensure they have adequate IT training, appropriate governance protocols for online working, and adequate mobile technologies. Wider contextual factors including adequate funding for mental health services and prioritisation of carer support, also need to be addressed for successful implementation of carer focussed digital interventions.Trial registrationStudy registration: ISCTRN 16267685.

A Web-Based Intervention for Relatives of People Experiencing Psychosis or Bipolar Disorder: Design Study Using a User-Centered Approach

BackgroundRelatives of people experiencing bipolar mood episodes or psychosis face a multitude of challenges (eg, social isolation, limited coping strategies, and issues with maintaining relationships). Despite this, there is limited informational and emotional support for people who find themselves in supporting or caring roles. Digital technologies provide us with an opportunity to offer accessible tools, which can be used flexibly to provide evidence-based information and support, allowing relatives to build their understanding of mental health problems and learn from others who have similar experiences. However, to design tools that are useful to relatives, we first need to understand their needs.ObjectiveThe aim of this study was to use a user-centered design approach to develop an accessible Web-based intervention, based on the Relatives Education And Coping Toolkit (REACT) booklet, to support the informational and emotional needs of relatives of people experiencing psychosis or bipolar disorder.MethodsWe engaged relatives of people with experiences of bipolar disorder or psychosis in workshops to identify their needs and design requirements for developing a Web-based version of a paper-based toolkit. We used a 2-phase qualitative approach to explore relatives’ views on content, design, and functionalities, which are considered to be engaging and useful in a Web-based intervention. In phase 1, we consulted 24 relatives in 2 workshops to better understand their existing support infrastructure, their barriers for accessing support, unmet needs, and relatives’ views on online support. On the basis of the results of these workshops, we developed a set of design considerations to be explored in a smaller workshop. Workshop 3 then involved working with 2 digitally literate relatives to design a usable and acceptable interface for our Web-based toolkit. Finally, in phase 2, we conducted a heuristic evaluation to assess the usability of the toolkit.ResultsOur findings indicated that relatives require technologies that (1) they can place their trust in, particularly when discussing a highly sensitive topic, (2) enable learning from the lived experiences of others while retaining confidentiality, and (3) they can work through at their own pace in a personalized manner.ConclusionsOur study highlights the need for providing a trustworthy, supportive tool where relatives can engage with people who have similar experiences to their own. Our heuristic evaluation showed promise in terms of perceived usability of the REACT Web-based intervention. Through this work, we emphasize the need to involve stakeholders with various characteristics, including users with limited computer literacy or experience in online support.

Protocol for an online randomised controlled trial to evaluate the clinical and cost-effectiveness of a peer-supported self-management intervention for relatives of people with psychosis or bipolar disorder: Relatives Education And Coping Toolkit (REACT)

IntroductionDespite clinical guidelines recommendations, many relatives of people with psychosis or bipolar disorder do not currently receive the support they need. Online information and support may offer a solution.Methods and...

Feasibility of a supported self-management intervention for relatives of people with recent-onset psychosis: REACT study

Relatives of people with psychosis experience high levels of distress and require support. Family interventions have been shown to be effective in improving outcomes but are difficult to access and not suitable for all relatives. To assess the feasibility and effectiveness of a supported self-management package for relatives of people with recent-onset psychosis. A randomised controlled trial (n = 103) comparing treatment as usual (TAU) in early intervention services with TAU plus the Relatives' Education And Coping Toolkit (REACT) intervention (trial identifier: ISRCTN69299093). Compared with TAU only, those receiving the additional REACT intervention showed reduced distress and increased perceived support and perceived ability to cope at 6-month follow-up. The toolkit is a feasible and potentially effective intervention to improve outcomes for relatives. A larger trial is needed to reliably assess the clinical and cost-effectiveness of REACT, and its impact on longer-term outcomes.

The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT)

BackgroundRelatives of people with psychosis experience high levels of distress. Interventions are needed which can reduce distress and are widely available.AimsThis study presents the views of relatives on how to design a supported self-management intervention for relatives.MethodFour focus groups were carried out and relatives were asked for their views on the content, format, support required, likely barriers and potential impact on the outcome of a self-management toolkit.ResultsRelatives were generally very positive about the development of a toolkit. Relatives had clear ideas about the design, emphasising particularly that it needs to be comprehensive, modular, supported and able to translate general information into the specific detail they require for their family member. Many of the ideas informed the development of Relatives Education And Coping Toolkit. Some suggestions, such as multiple modes of delivery, earlier access to the toolkit in primary care and peer support from other relatives, were not possible in this study but should be considered for future development.ConclusionsRelatives supported the development of a supported self-management toolkit intervention. They also emphasised the importance of offering such interventions alongside other valued aspects of services including face-to-face contact with clinicians, peer support from other relatives and crisis support.

Relatives Education And Coping Toolkit - REACT. Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self management package for relatives of people with recent onset psychosis

BackgroundMental health problems commonly begin in adolescence when the majority of people are living with family. This can be a frightening time for relatives who often have little knowledge of what is happening or how to manage it. The UK National Health Service has a commitment to support relatives in order to reduce their distress, but research studies have shown that this can lead to a better outcome for service users as well. Unfortunately, many relatives do not get the kind of support they need. We aim to evaluate the feasibility, acceptability and effectiveness of providing and supporting a Relatives' Education and Coping Toolkit (REACT) for relatives of people with recent onset psychosis.MethodsThe study is a randomised control trial. Trial Registration for Current Controlled Trials ISRCTN69299093. Relatives of people receiving treatment from the Early Intervention Service for psychosis are randomly allocated to receive either Treatment As Usual (TAU) or TAU plus the REACT intervention. The main aims of the study are to: (i) determine the acceptability of a supported self-management intervention; (ii) determine preference for type of support; (iii) assess the feasibility of the design; (iv) identify the barriers and solutions to offering support for self-management approaches within the NHS; (v) estimate the likely effect size of the impact of the intervention on outcome for relatives; (vi) gain detailed feedback about the barriers and solutions to using a self-management approach; (vii) describe the way in which the intervention is used. Outcomes will be assessed from baseline and at 6 month follow-up.DiscussionThe intervention is compared to current treatment in a sample of participants highly representative of relatives in routine early intervention services across the UK. The intervention is protocolised, offered within routine practice by existing staff and extensive process data is being collected. Randomisation is independent; all assessments are made by blind raters. The limitations of the study are the lack of control over how the intervention is delivered, the short follow-up period, and the lack of assessment of service user outcomes. Despite these, the findings will inform future effectiveness trials and contribute to the growing evidence base for supported self-mangement interventions in mental health.