From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research

Prebeg, Matthew; Patton, Megan; Desai, Riddhi; Smith, Maureen; Krause, Karolin Rose; Butcher, Nancy J.

doi:10.1016/s2215-0366(22)00377-7

Cited by 14 publications

(12 citation statements)

References 24 publications

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“…This acknowledges that well-being is not static and may shift over the period of involvement. Prebeg et al (2023) recently proposed that authentic engagement of young people in mental health research should be reconceptualized around relational empowerment, fluidity, and flexibility. Furthermore, while ensuring inclusive and adaptable involvement is relevant for all young people, it is particularly important for young people who may have additional support needs (Bradbury-Jones et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

Involving Young People With Lived and Living Experience of Suicide in Suicide Research

Webb,

Cooper,

Hemming

et al. 2024

Crisis

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Background: Research into youth suicide prevention rarely involves young people with lived and living experiences as collaborators. Key barriers include a lack of guidelines or frameworks to inform collaboration, appropriate ethical approval processes, perceived risk, and recruitment. Aim: To develop guidelines for involving young people with lived and living experiences in suicide research as collaborators. Method: A Delphi expert consensus study was conducted with two expert panels: a youth lived and living experiences panel and a traditionally qualified researcher panel. Items rated as essential or important using a five-point Likert scale by more than 80% of both panels were included in the guidelines. Results: Forty-nine experts completed two consensus rounds. The guidelines are organized as follows: (1) preparation, (2) supporting safety and well-being, (3) evaluating involvement, and (4) tips for young people. Limitations: Participants were from English-speaking, Western countries only. Conclusion: These world-first guidelines address the unique challenges and opportunities for involving young people with lived and living experiences in suicide research.

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Section: Discussionmentioning

confidence: 99%

Involving Young People With Lived and Living Experience of Suicide in Suicide Research

Webb,

Cooper,

Hemming

et al. 2024

Crisis

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“…Future studies focused on refining the CONNECT program have the potential to improve the transitional experiences and outcomes of youth living with childhood-acquired disabilities and their families. The age and developmental variations among youth with complex care needs complicate the logistics of patient engagement with the intervention, as tailored approaches are essential owing to diverse cognitive and communication abilities [ 67 , 68 ]. Therefore, addressing these logistical challenges while maintaining a patient-centered, coproduced approach is paramount in the refinement of the CONNECT program.…”

Section: Discussionmentioning

confidence: 99%

“…Peer-patient navigation was also associated with increased adherence to cancer care follow-up treatment and obtaining early diagnoses [ 69 ]. Moreover, data from published studies reporting telehealth solutions for people living with illness or disability suggest the delivery of patient-centered care, relationship building between professionals and patients [ 68 ], and supporting medication adherence and health system cost savings [ 70 ]. Future directions for this program of research will include evaluating the effectiveness and health economic impacts of an optimized CONNECT intervention in a large-scale, pragmatic, randomized controlled trial.…”

Section: Discussionmentioning

confidence: 99%

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study

Kokorelias,

Lee,

Bayley

et al. 2024

JMIR Pediatr Parent

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Background Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. Objective This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). Methods A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). Results Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants’ feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. Conclusions Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

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“…In the mental health literature, there is growing interest in examining the lived experience of psychiatric illness, particularly in youth mental health (Prebeg et al., 2022 ). Such work has done much to champion the valuable insight young people can offer into their own mental health.…”

Section: Lived Experiencementioning

confidence: 99%

Commentary: Closing the gender gap in depression through the lived experience of young women – a response to ‘Don't mind the gap: Why do we not care about the gender gap in mental health?’, Patalay and Demkowicz (2023)

Spencer

Broome

2023

Child Adoles Ment Health

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Most mental health research largely ignores or minimises gender and age differences in depression. In ‘Don't mind the gap: Why do we not care about the gender gap in mental health?’, Patalay and Demkowicz identify a dearth of research on the causal factors of depression in young women. They attribute this to an over‐reliance on biological accounts of gender differences in depression. Patalay and Demkowicz conclude that a person‐centred approach that meaningfully engages with the reports of young women with depression is more likely to expose the social drivers of depression that impact this group. This commentary focuses on Patalay and Demkowicz's call to examine the patient's lived experience. We argue that there is an urgent need to reflect upon the methodologies involved in examining lived experience and how they can be best utilised. Ultimately, we advocate for an approach known as ‘phenomenological psychopathology’, through a phenomenological investigation of depression in young women, we can go some way towards closing the gender gap.

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From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research

Cited by 14 publications

References 24 publications

Involving Young People With Lived and Living Experience of Suicide in Suicide Research

Involving Young People With Lived and Living Experience of Suicide in Suicide Research

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study

Commentary: Closing the gender gap in depression through the lived experience of young women – a response to ‘Don't mind the gap: Why do we not care about the gender gap in mental health?’, Patalay and Demkowicz (2023)

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