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2. Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention

Author

Slade, Mike, Rennick-Egglestone, Stefan, Llewellyn-Beardsley, Joy, Yeo, Caroline, Roe, James, Bailey, Sylvia, Smith, Roger Andrew, Booth, Susie, Harrison, Julian, Bhogal, Adaresh, Penas Morán, Patricia, Hui, Ada, Quadri, Dania, Robinson, Clare, Smuk, Melanie, Farkas, Marianne, Davidson, Larry, van der Krieke, Lian, Slade, Emily, Bond, Carmel, Nicholson, Joe, Grundy, Andrew, Charles, Ashleigh, Hare-Duke, Laurie, Pollock, Kristian, and Ng, Fiona

Subjects
Medicine
Abstract

BackgroundThe 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). ObjectiveThis study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. MethodsKnowledge 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. ResultsKI1 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 individual 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. ConclusionsRRNs 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.

Published
2021
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3. Cross-Cultural Insights from Two Global Mental Health Studies: Self-Enhancement and Ingroup Biases

Author

Kotera, Yasuhiro, Ronaldson, Amy, Hayes, Daniel, Hunter-Brown, Holly, McPhilbin, Merly, Dunnett, Danielle, Jebara, Tesnime, Takhi, Simran, Masuda, Takahiko, Camacho, Elizabeth, Bakolis, Ioannis, Repper, Julie, Meddings, Sara, Stergiopoulos, Vicky, Brophy, Lisa, De Ruysscher, Clara, Okoliyski, Michail, Kubinová, Petra, Eplov, Lene, Toernes, Charlotte, Narusson, Dagmar, Tinland, Aurélie, Puschner, Bernd, Hiltensperger, Ramona, Lucchi, Fabio, Miyamoto, Yuki, Castelein, Stynke, Borg, Marit, Klevan, Trude Gøril, Meng, Roger Tan Boon, Sornchai, Chatdanai, Tiengtom, Kruawon, Farkas, Marianne, Jones, Hannah Moreland, Moore, Edith, Butler, Ann, Mpango, Richard, Tse, Samson, Kondor, Zsuzsa, Ryan, Michael, Zuaboni, Gianfranco, Elton, Dan, Grant-Rowles, Jason, McNaughton, Rebecca, Harcla, Claire, Vanderplasschen, Wouter, Arbour, Simone, Silverstone, Denise, Bejerholm, Ulrika, Powell, Candice, Ochoa, Susana, Garcia-Franco, Mar, Tolonen, Jonna, Yeo, Caroline, Charles, Ashleigh, Jepps, Jessica, Simpson, Adelabu, Kellermann, Vanessa, Todowede, Olamide, Asher, Laura, Murakami, Michio, Hopkins, Liza, Jahau, Ngurzoi, Arakawa, Naoko, Scanferla, Elisabetta, Henderson, Claire, and Slade, Mike

Published
2024
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4. Measuring fidelity to manualised peer support for people with severe mental health conditions: development and psychometric evaluation of the UPSIDES fidelity scale

Author

Hiltensperger, Ramona, Kotera, Yasuhiro, Wolf, Philip, Nixdorf, Rebecca, Charles, Ashleigh, Farkas, Marianne, Grayzman, Alina, Kalha, Jasmine, Korde, Palak, Mahlke, Candelaria, Moran, Galia, Mpango, Richard, Mtei, Rachel, Ryan, Grace, Shamba, Donat, Wenzel, Lisa, Slade, Mike, and Puschner, Bernd

Published
2024
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5. 28-country global study on associations between cultural characteristics and Recovery College fidelity

Author

Kotera, Yasuhiro, Ronaldson, Amy, Hayes, Daniel, Hunter-Brown, Holly, McPhilbin, Merly, Dunnett, Danielle, Jebara, Tesnime, Takhi, Simran, Masuda, Takahiko, Camacho, Elizabeth, Bakolis, Ioannis, Repper, Julie, Meddings, Sara, Stergiopoulos, Vicky, Brophy, Lisa, De Ruysscher, Clara, Okoliyski, Michail, Kubinová, Petra, Eplov, Lene, Toernes, Charlotte, Narusson, Dagmar, Tinland, Aurélie, Puschner, Bernd, Hiltensperger, Ramona, Lucchi, Fabio, Miyamoto, Yuki, Castelein, Stynke, Borg, Marit, Klevan, Trude Gøril, Tan Boon Meng, Roger, Sornchai, Chatdanai, Tiengtom, Kruawon, Farkas, Marianne, Moreland Jones, Hannah, Moore, Edith, Butler, Ann, Mpango, Richard, Tse, Samson, Kondor, Zsuzsa, Ryan, Michael, Zuaboni, Gianfranco, Elton, Dan, Grant-Rowles, Jason, McNaughton, Rebecca, Hanlon, Charlotte, Harcla, Claire, Vanderplasschen, Wouter, Arbour, Simone, Silverstone, Denise, Bejerholm, Ulrika, Powell, Candice, Ochoa, Susana, Garcia-Franco, Mar, Tolonen, Jonna, Yeo, Caroline, Charles, Ashleigh, Henderson, Claire, and Slade, Mike

Published
2024
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6. Person-Centered Rehabilitation

Author

Farkas, Marianne, Kesselring, Juerg, Slavin, Mary D., Mezzich, Juan E., editor, Appleyard, W. James, editor, Glare, Paul, editor, Snaedal, Jon, editor, and Wilson, C. Ruth, editor

Published
2023
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7. Organisational and student characteristics, fidelity, funding models, and unit costs of recovery colleges in 28 countries: a cross-sectional survey

Author

De Ruysscher, Clara, Okoliyski, Michail, Kubinová, Petra, Eplov, Lene Falgaard, Toernes, Charlotte, Narusson, Dagmar, Tinland, Aurélie, Puschner, Bernd, Hiltensperger, Ramona, Lucchi, Fabio, Borg, Marit, Tan, Roger Boon Meng, Sornchai, Chatdanai, Tiengtom, Kim, Farkas, Marianne, Morland-Jones, Hannah, Butler, Ann, Mpango, Richard, Tse, Samson, Kondor, Zsuzsa, Ryan, Michael, Zuaboni, Gianfranco, Hanlon, Charlotte, Harcla, Claire, Vanderplasschen, Wouter, Arbour, Simone, Silverstone, Denise, Bejerholm, Ulrika, Powell, Candice Lym, Ochoa, Susana, Garcia-Franco, Mar, Tolonen, Jonna, Dunnett, Danielle, Yeo, Caroline, Stepanian, Katy, Jebara, Tesnime, Hayes, Daniel, Hunter-Brown, Holly, Camacho, Elizabeth, McPhilbin, Merly, Elliott, Rachel A, Ronaldson, Amy, Bakolis, Ioannis, Repper, Julie, Meddings, Sara, Stergiopoulos, Vicky, Brophy, Lisa, Miyamoto, Yuki, Castelein, Stynke, Klevan, Trude Gøril, Elton, Dan, Grant-Rowles, Jason, Kotera, Yasuhiro, Henderson, Claire, and Slade, Mike

Published
2023
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10. The Challenge of Evidence in Disability and Rehabilitation Research and Practice: A Position Paper

Author

SEDL, National Center for the Dissemination of Disability Research (NCDDR), Johnston, Mark V., Vanderheiden, Gregg C., Farkas, Marianne D., Rogers, E. Sally, Summers, Jean Ann, and Westbrook, John D.

Abstract

This paper states the position of the National Center for the Dissemination of Disability Research (NCDDR) Task Force on Standards of Evidence and Methods (TFSE) regarding the need for (a) the thoughtful determination of research evidence on the basis of both the rigor of the research and the relevance of the research to the lives of people with disabilities; and (b) systems that facilitate our ability, on a timely basis, to describe what the best available evidence is in response to specific topical questions in disability and rehabilitation. The primary focus of this paper is on evidence for interventions in the field of disability and rehabilitation (D&R). Evidence issues related to D&R interventions concern all people with disabilities and involve both research and development, as both are extremely important. The specific objectives of this paper are the following: (1) To clarify what is meant by the term evidence and to describe the nature of the contemporary systems used to identify and evaluate evidence in intervention research; (2) To identify the challenges in meeting contemporary standards of evidence in the field of D&R interventions; and (3) To propose next steps for examining related issues and for taking action to promote the availability of evidence-based services and information in the field of D&R interventions. [This paper was developed as a group effort of the National Center for the Dissemination of Disability Research (NCDDR) Task Force on Standards of Evidence and Methods (TFSE).]

Published
2009

13. Organisational and student characteristics, fidelity, funding models, and unit costs of recovery colleges in 28 countries: a cross-sectional survey

Author

Hayes, Daniel, primary, Hunter-Brown, Holly, additional, Camacho, Elizabeth, additional, McPhilbin, Merly, additional, Elliott, Rachel A, additional, Ronaldson, Amy, additional, Bakolis, Ioannis, additional, Repper, Julie, additional, Meddings, Sara, additional, Stergiopoulos, Vicky, additional, Brophy, Lisa, additional, Miyamoto, Yuki, additional, Castelein, Stynke, additional, Klevan, Trude Gøril, additional, Elton, Dan, additional, Grant-Rowles, Jason, additional, Kotera, Yasuhiro, additional, Henderson, Claire, additional, Slade, Mike, additional, De Ruysscher, Clara, additional, Okoliyski, Michail, additional, Kubinová, Petra, additional, Eplov, Lene Falgaard, additional, Toernes, Charlotte, additional, Narusson, Dagmar, additional, Tinland, Aurélie, additional, Puschner, Bernd, additional, Hiltensperger, Ramona, additional, Lucchi, Fabio, additional, Borg, Marit, additional, Tan, Roger Boon Meng, additional, Sornchai, Chatdanai, additional, Tiengtom, Kim, additional, Farkas, Marianne, additional, Morland-Jones, Hannah, additional, Butler, Ann, additional, Mpango, Richard, additional, Tse, Samson, additional, Kondor, Zsuzsa, additional, Ryan, Michael, additional, Zuaboni, Gianfranco, additional, Hanlon, Charlotte, additional, Harcla, Claire, additional, Vanderplasschen, Wouter, additional, Arbour, Simone, additional, Silverstone, Denise, additional, Bejerholm, Ulrika, additional, Powell, Candice Lym, additional, Ochoa, Susana, additional, Garcia-Franco, Mar, additional, Tolonen, Jonna, additional, Dunnett, Danielle, additional, Yeo, Caroline, additional, Stepanian, Katy, additional, and Jebara, Tesnime, additional

Published
2023
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14. Recovery College characteristics, fidelity, commissioning models and unit costs: a cross-sectional global survey of 28 countries

Author

Hayes, Daniel, primary, Hunter-Brown, Holly, additional, Camacho, Elizabeth, additional, McPhilbin, Merly, additional, Elliot, Rachel, additional, Ronaldson, Amy, additional, Bakolis, Ioannis, additional, Repper, Julie, additional, Meddings, Sarah, additional, Stergiopoulos, Vicky, additional, Brophy, Lisa, additional, De Ruysscher, Clara, additional, Okoliyski, Michail, additional, Kubinová, Petra, additional, Eplov, Lene Falgaard, additional, Toernes, Charlotte, additional, Narusson, Dagmar, additional, Tinland, Aurélie, additional, Puschner, Bernd, additional, Hiltensperger, Ramona, additional, Lucci, Fabio, additional, Miyamoto, Yuki, additional, Castelein, Stynke, additional, Borg, Marit, additional, Klevan, Trude Gøril, additional, Meng, Roger Tan Boon, additional, Sornchai, Chatdanai, additional, Tiengtom, Kim, additional, Farkas, Marianne, additional, Jones, Hannah Moreland, additional, Butler, Ann, additional, Mpango, Richard, additional, Tse, Samson, additional, Kondor, Zsuzsa, additional, Ryan, Michael, additional, Zuaboni, Gianfranco, additional, Elton, Daniel, additional, Grant-Rowles, Jason, additional, Hanlon, Charlotte, additional, Harcla, Claire, additional, Vanderplasschen, Wouter, additional, Arbour, Simone, additional, Silverstone, Denise, additional, Bejerholm, Ulrika, additional, Powell, Candice L. Y. M., additional, Ochoa, Susana, additional, Garcia-Franco, Mar, additional, Tolonen, Jonna, additional, Dunnett, Danielle, additional, Yeo, Caroline, additional, Stepanian, Katy, additional, Jebara, Tesnime, additional, Kotera, Yasuhiro, additional, Henderson, Claire, additional, and Slade, Mike, additional

Published
2023
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15. Person-Centered Psychiatric Rehabilitation

Author

Farkas, Marianne, Anthony, William, Montenegro, Roger, Gayvoronskaya, Elena, Mezzich, Juan E., editor, Botbol, Michel, editor, Christodoulou, George N., editor, Cloninger, C. Robert, editor, and Salloum, Ihsan M., editor

Published
2016
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16. Effectiveness and cost‐effectiveness of online recorded recovery narratives in improving quality of life for people with non‐psychotic mental health problems: a pragmatic randomized controlled trial

Author

Slade, Mike, Rennick‐Egglestone, Stefan, Elliott, Rachel A., Newby, Chris, Robinson, Clare, Gavan, Sean P., Paterson, Luke, Ali, Yasmin, Yeo, Caroline, Glover, Tony, Pollock, Kristian, Callard, Felicity, Priebe, Stefan, Thornicroft, Graham, Repper, Julie, Keppens, Jeroen, Smuk, Melanie, Franklin, Donna, Walcott, Rianna, Harrison, Julian, Smith, Roger, Robotham, Dan, Bradstreet, Simon, Gillard, Steve, Cuijpers, Pim, Farkas, Marianne, Zeev, Dror Ben, Davidson, Larry, Kotera, Yasuhiro, Roe, James, Ng, Fiona, and Llewellyn‐Beardsley, Joy

Abstract

Narratives describing first‐hand experiences of recovery from mental health problems are widely available. Emerging evidence suggests that engaging with mental health recovery narratives can benefit people experiencing mental health problems, but no randomized controlled trial has been conducted as yet. We developed the Narrative Experiences Online (NEON) Intervention, a web application providing self‐guided and recommender systems access to a collection of recorded mental health recovery narratives (n=659). We investigated whether NEON Intervention access benefited adults experiencing non‐psychotic mental health problems by conducting a pragmatic parallel‐group randomized trial, with usual care as control condition. The primary endpoint was quality of life at week 52 assessed by the Manchester Short Assessment (MANSA). Secondary outcomes were psychological distress, hope, self‐efficacy, and meaning in life at week 52. Between March 9, 2020 and March 26, 2021, we recruited 1,023 participants from across England (the target based on power analysis was 994), of whom 827 (80.8%) identified as White British, 811 (79.3%) were female, 586 (57.3%) were employed, and 272 (26.6%) were unemployed. Their mean age was 38.4±13.6 years. Mood and/or anxiety disorders (N=626, 61.2%) and stress‐related disorders (N=152, 14.9%) were the most common mental health problems. At week 52, our intention‐to‐treat analysis found a significant baseline‐adjusted difference of 0.13 (95% CI: 0.01‐0.26, p=0.041) in the MANSA score between the intervention and control groups, corresponding to a mean change of 1.56 scale points per participant, which indicates that the intervention increased quality of life. We also detected a significant baseline‐adjusted difference of 0.22 (95% CI: 0.05‐0.40, p=0.014) between the groups in the score on the “presence of meaning” subscale of the Meaning in Life Questionnaire, corresponding to a mean change of 1.1 scale points per participant. We found an incremental gain of 0.0142 quality‐adjusted life years (QALYs) (95% credible interval: 0.0059 to 0.0226) and a £178 incremental increase in cost (95% credible interval: –£154 to £455) per participant, generating an incremental cost‐effectiveness ratio of £12,526 per QALY compared with usual care. This was lower than the £20,000 per QALY threshold used by the National Health Service in England, indicating that the intervention would be a cost‐effective use of health service resources. In the subgroup analysis including participants who had used specialist mental health services at baseline, the intervention both reduced cost (–£98, 95% credible interval: –£606 to £309) and improved QALYs (0.0165, 95% credible interval: 0.0057 to 0.0273) per participant as compared to usual care. We conclude that the NEON Intervention is an effective and cost‐effective new intervention for people experiencing non‐psychotic mental health problems.

Published
2024
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20. Revisiting the Rationale and Evidence for Peer Support

Author

Davidson, Larry, Bellamy, Chyrell, Chinman, Matthew, Farkas, Marianne, Ostrow, Laysha, Cook, Judith A., Jonikas, Jessica A., Rosenthal, Harvey, Bergeson, Sue, and Daniels, Allen S.

Subjects
Homelessness -- Analysis, Violence, Health, Psychology and mental health
Abstract

A recent issue of Psychiatric Times featured an opinion piece by D.J. Jaffe who argued that there is little empirical support for the effectiveness of paid peer-support staff--persons in recovery [...]

Published
2018

27. Supported Education: Systematic Review 2009-2020

Author

Korevaar, L., Hofstra, Jacomijn, Buttner, Svenja, Farkas, Marianne, and van der Velde, Jorien

Subjects
Healthy Ageing, Sociale Wetenschappen (Alles), Community Participation Of Vulnerable Citizens, Psychiatric Epidemiology, Science, Social Sciences(All), Psychiatrische Epidemologie, Maatschappelijke Participatie Van Kwetsbare Burgers
Published
2021

38. Knowledge dissemination and utilization in gerontology: an organizing framework

Author

Farkas, Marianne, Jette, Alan M., Tennstedt, Sharon, Haley, Stephen M., and Quinn, Virginia

Subjects
Gerontology -- Information management, Gerontologists -- Information management, Gerontologists -- Management, Company systems management, Company business management, Health, Seniors
Abstract

Purpose: Enabling valuable research findings to be used by the field requires a strategic approach to dissemination and utilization rather than simply making constituencies aware of the information. This article describes a conceptual framework for the dissemination and utilization of information, along with examples of its use by the Boston University Roybal Center for Enhancement of Late Life Function. Design and Methods: The framework identifies dissemination/utilization goals of exposure, experience, expertise, and embedding ('4 E') and relates each goal to strategies targeted for specific users. Results and Implications: The Boston University center exposed the field to information through presentations, print-and Web-based information, provided consumers and family members with new findings through motivational videotapes, developed expertise-level training programs, and embedded the new findings within organizations and systems. The 4 E framework can translate critical research outcomes into useful information to assist the field to better care and support available for individuals in late life. Key Words: Information dissemination, Information utilization, Conceptual framework, Roybal Center, Fear of falling, Muscle strengthening, Late Life Function and Disability Instrument

Published
2003

41. Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention (Preprint)

Author

Slade, Mike, primary, Rennick-Egglestone, Stefan, additional, Llewellyn-Beardsley, Joy, additional, Yeo, Caroline, additional, Roe, James, additional, Bailey, Sylvia, additional, Smith, Roger Andrew, additional, Booth, Susie, additional, Harrison, Julian, additional, Bhogal, Adaresh, additional, Penas Morán, Patricia, additional, Hui, Ada, additional, Quadri, Dania, additional, Robinson, Clare, additional, Smuk, Melanie, additional, Farkas, Marianne, additional, Davidson, Larry, additional, van der Krieke, Lian, additional, Slade, Emily, additional, Bond, Carmel, additional, Nicholson, Joe, additional, Grundy, Andrew, additional, Charles, Ashleigh, additional, Hare-Duke, Laurie, additional, Pollock, Kristian, additional, and Ng, Fiona, additional

Published
2020
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47. The 3Cs for recovery services: before beginning a transformation, make sure your agency has the culture, commitment, and capacity for recovery

Author

Farkas, Marianne, Ashcraft, Lori, and Anthony, William A.

Subjects
Corporate culture -- Management, Psychiatric services -- Management, Health, Health care industry, Psychology and mental health, Company business management, Management
Abstract

In 1993, Dr. Anthony introduced the concept of a recovery-oriented mental healthcare system, (1) based on the notion of recovery advanced by people with severe mental illnesses (2) initially researched [...]

Published
2008

48. Supported education : community participation for (young) people with psychiatric disabilities

Author

Korevaar, L., Hofstra, Jacomijn, Hiddink, Franca, and Farkas, Marianne

Subjects
Healthy Ageing, Psychiatrische Geestelijke Gezondheid, Community Participation Of Vulnerable Citizens, Supported Education, Begeleid Leren, Maatschappelijke Participatie Van Kwetsbare Burgers, Professional Practice &Amp; Society, Psychiatrische Handicap, Psychiatric Mental Health, Onderwijs, Psychiatric Disorders, Education
Published
2018

49. Characteristics of mental health recovery narratives: Systematic review and narrative synthesis

Author

Llewellyn-Beardsley, Joy, primary, Rennick-Egglestone, Stefan, additional, Callard, Felicity, additional, Crawford, Paul, additional, Farkas, Marianne, additional, Hui, Ada, additional, Manley, David, additional, McGranahan, Rose, additional, Pollock, Kristian, additional, Ramsay, Amy, additional, Sælør, Knut Tore, additional, Wright, Nicola, additional, and Slade, Mike, additional

Published
2019
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