“The biggest barrier is to inclusion itself”: the experience of citizenship for adults with mental health problems

Cogan, Nicola; MacIntyre, Gillian; Stewart, Ailsa; Tofts, Abigail; Quinn, Neil; Johnston, Gordon; Hamill, Linda; Robinson, John W.; Igoe, Michael; Easton, Duncan; McFadden, Anne Marie; Rowe, Michael

doi:10.1080/09638237.2020.1803491

Cited by 22 publications

(27 citation statements)

References 58 publications

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“…This includes people living in deprived circumstances, people with cognitive difficulties, people with paranoia, or those who do not speak the same language as service providers. Understanding how to use technology is also important for service users' social engagement and connection, which is relevant for wider recovery and citizenship [159][160][161]. Young children may also be disproportionately affected as they may not be able to resolve difficulties they experience during telemental health sessions without the help of their parents or other supporters.…”

Section: Cmo 13: Benefits Of Providing Support and Guidance For Using...mentioning

confidence: 99%

Synthesis of the Evidence on What Works for Whom in Telemental Health: Rapid Realist Review

Schlief¹,

Saunders²,

Appleton³

et al. 2022

Interact J Med Res

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Background Telemental health (delivering mental health care via video calls, telephone calls, or SMS text messages) is becoming increasingly widespread. Telemental health appears to be useful and effective in providing care to some service users in some settings, especially during an emergency restricting face-to-face contact, such as the COVID-19 pandemic. However, important limitations have been reported, and telemental health implementation risks the reinforcement of pre-existing inequalities in service provision. If it is to be widely incorporated into routine care, a clear understanding is needed of when and for whom it is an acceptable and effective approach and when face-to-face care is needed. Objective This rapid realist review aims to develop a theory about which telemental health approaches work (or do not work), for whom, in which contexts, and through what mechanisms. Methods Rapid realist reviewing involves synthesizing relevant evidence and stakeholder expertise to allow timely development of context-mechanism-outcome (CMO) configurations in areas where evidence is urgently needed to inform policy and practice. The CMO configurations encapsulate theories about what works for whom and by what mechanisms. Sources included eligible papers from 2 previous systematic reviews conducted by our team on telemental health; an updated search using the strategy from these reviews; a call for relevant evidence, including “gray literature,” to the public and key experts; and website searches of relevant voluntary and statutory organizations. CMO configurations formulated from these sources were iteratively refined, including through discussions with an expert reference group, including researchers with relevant lived experience and frontline clinicians, and consultation with experts focused on three priority groups: children and young people, users of inpatient and crisis care services, and digitally excluded groups. Results A total of 108 scientific and gray literature sources were included. From our initial CMO configurations, we derived 30 overarching CMO configurations within four domains: connecting effectively; flexibility and personalization; safety, privacy, and confidentiality; and therapeutic quality and relationship. Reports and stakeholder input emphasized the importance of personal choice, privacy and safety, and therapeutic relationships in telemental health care. The review also identified particular service users likely to be disadvantaged by telemental health implementation and a need to ensure that face-to-face care of equivalent timeliness remains available. Mechanisms underlying the successful and unsuccessful application of telemental health are discussed. Conclusions Service user choice, privacy and safety, the ability to connect effectively, and fostering strong therapeutic relationships need to be prioritized in delivering telemental health care. Guidelines and strategies coproduced with service users and frontline staff are needed to optimize telemental health implementation in real-world settings. Trial Registration International Prospective Register of Systematic Reviews (PROSPERO); CRD42021260910; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021260910

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Section: Cmo 13: Benefits Of Providing Support and Guidance For Using...mentioning

confidence: 99%

Synthesis of the Evidence on What Works for Whom in Telemental Health: Rapid Realist Review

Schlief¹,

Saunders²,

Appleton³

et al. 2022

Interact J Med Res

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“…This is probably linked to the predominant family structure in Brazil, where sick people are frequently cared for at home by their relatives ( 35 ). On the other hand, needs that relate to a closer relationship with people outside the family (such as daytime activities and company) were more often unmet, showing the importance to effectively implement public policies that address the social integration of people with mental disorders ( 36 ), something that has been done in only a partial way in Brazil to date ( 5 , 6 ). Patients living alone had significantly more unmet needs than those living with a partner, which reinforces that family is the main support source to meet needs ( 35 ).…”

Section: Discussionmentioning

confidence: 99%

Patient needs four years after first psychiatric hospitalization in a Brazilian cohort

Santos

Roza

Barros

et al. 2021

Braz J Med Biol Res

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Knowledge about the needs of psychiatric patients is essential for mental health care planning. However, research on met and unmet needs is still scarce, particularly in low-and middle-income countries. This study aimed to describe the patients' needs (met and unmet) at least four years after their first psychiatric hospitalization and to verify the role of demographic and clinical features as possible predictors of these needs. Patients who had their first psychiatric admission between January 1, 2006 and December 31, 2007 at an inpatient unit in the city of Ribeirão Preto, Brazil, were eligible to participate in the study. Patients were contacted and face-to-face interviews were conducted by psychologists using the Camberwell Assessment of Need. Data were analyzed using zero-inflated negative binomial regression model. Of 933 eligible patients, 333 were interviewed. The highest level of needs was related to welfare benefits (32.4%, unmet=25.5%), followed by household skills (30.3%, unmet=3.0%), psychotic symptoms (29.4%, unmet=9.0%), psychological distress (27.6%, unmet=8.4%), physical health (24.3%, unmet=5.4%), daytime activities (19.5%, unmet=16.5%), and money (16.8%, unmet=9.0%). Fewer years of schooling, living with relatives, and unemployment at the moment of the first admission were significantly associated with a higher number of both met and unmet needs in the follow-up. Unmet needs were also more often reported by patients living alone. In conclusion, socioeconomic indicators were the best predictors of needs. The unmet needs related to welfare benefits point to the need for specific social and health policies.

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“…The interviews were jointly conducted by the Research Assistant and a Peer Researcher to have a young person’s perspective on the research process in order for it to be as inclusive and as representative as possible. Indeed, mental health and health research has highlighted the importance of involving members of the public in research processes in order to be as inclusive and representative as possible [ 23 , 24 ]. The peer researcher is a paid young person, aged 15-25 years, with either direct or indirect experience of mental health difficulties.…”

Section: Methodsmentioning

confidence: 99%

Experiences of Using the Digital Support Tool MeeToo: Mixed Methods Study

Ravaccia¹,

Johnson²,

Morgan³

et al. 2022

JMIR Pediatr Parent

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Background Digital peer support is an increasingly used form of mental health support for young people. However, there is a need for more research on the impact of digital peer support and why it has an impact. Objective The aim of this research is to examine young people’s experiences of using a digital peer support tool: MeeToo. After the time of writing, MeeToo has changed their name to Tellmi. MeeToo is an anonymous, fully moderated peer support tool for young people aged 11-25 years. There were two research questions: (1) What impacts did using MeeToo have on young people? (2) Why did using MeeToo have these impacts on young people? Methods A mixed methods study was conducted. It involved secondary analysis of routinely collected feedback questionnaires, which were completed at two time points (T1 and T2) 2-3 months apart. Questionnaires asked about young people’s (N=876) experience of using MeeToo, mental health empowerment, and well-being. Primary data were collected from semistructured interviews with 10 young people. Results Overall, 398 (45.4%) of 876 young people completed the T1 questionnaire, 559 (63.8%) completed the T2 questionnaire, and 81 (9.2%) completed both. Descriptive statistics from the cross-sectional analysis of the questionnaires identified a range of positive impacts of using MeeToo, which included making it easier to talk about difficult things, being part of a supportive community, providing new ways to help oneself, feeling better, and feeling less alone. Subgroup analysis (paired-sample t test) of 58 young females who had completed both T1 and T2 questionnaires showed a small but statistically significant increase in levels of patient activation, one of the subscales of the mental health empowerment scale: time 1 mean=1.83 (95% CI 1.72-1.95), time 2 mean=2.00 (95% CI 1.89-2.11), t59=2.15, and P=.04. Anonymity and the MeeToo sense of community were identified from interviews as possible reasons for why using MeeToo had these impacts. Anonymity helped to create a safe space in which users could express their feelings, thoughts, and experiences freely without the fear of being judged by others. The MeeToo sense of community was described as a valuable form of social connectedness, which in turn had a positive impact on young people’s mental health and made them feel less isolated and alone. Conclusions The findings of this research showed a range of positive impacts and possible processes for young people using MeeToo. Future research is needed to examine how these impacts and processes can be sustained.

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“The biggest barrier is to inclusion itself”: the experience of citizenship for adults with mental health problems

Cited by 22 publications

References 58 publications

Synthesis of the Evidence on What Works for Whom in Telemental Health: Rapid Realist Review

Synthesis of the Evidence on What Works for Whom in Telemental Health: Rapid Realist Review

Patient needs four years after first psychiatric hospitalization in a Brazilian cohort

Experiences of Using the Digital Support Tool MeeToo: Mixed Methods Study

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