Lived Experience Of Depression Research Articles

Links between mental health problems and future thinking from the perspective of adolescents with experience of depression and anxiety: a qualitative study

BackgroundDepression and anxiety are common during adolescence and could have detrimental impacts on young people’s ability to make and implement plans for their future. However, to the best of our knowledge, no other study has adopted a qualitative approach in investigating these effects from the perspective of adolescents with lived experiences of depression and anxiety. We sought to understand how young people perceive and interpret the impact of mental health conditions on their thinking about the future.MethodsWe conducted semi-structured interviews with 19 adolescents aged 16–19 years in the UK (median age = 19, IQR = 1.5), who had a history of protracted periods of clinical or subclinical depression and/or anxiety. They were asked to reflect on how their ability to think about the future and the content of the future-related thinking was impacted during periods of poor mental health, compared with periods of feeling well. Interviews were transcribed verbatim and subjected to thematic content analysis.ResultsFive domains were identified. First, the impact of mood on future thinking capability focuses on reduced ability and motivation to engage in future thinking. Second, the impact of mood on images, thoughts, and feelings about the future includes the emotional valence of future-related thoughts, their vividness, structure, and the extent to which they intimated subjective feelings of control (i.e., agency). Third, social influences focuses on social factors that might ameliorate or exacerbate future thinking. Fourth, reflections on personal worries and expectations about the future captures personal interpretations of past worries and hopes and how future thinking affected mood. Finally, personal coping refers to how young people cope with the negative emotions that come with future thinking.ConclusionsThis study provided a nuanced and granular account of how depression and anxiety impacted young people’s future thinking based on their lived experiences. By highlighting the different ways that variations in future thinking were experienced as a function of depression and anxiety, our analysis highlighted new factors that should be considered in studies of adolescent mental health risk, which could inform the development of new therapeutic approaches.

The lived experience of depression: a bottom-up review co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of depression, co-written by experts by experience and academics. First-person accounts withinand outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of depression, family members and carers, representing a global network of organizations. The material was enriched by phenomenologically informedperspectives and shared with all collaborators in a cloud-based system. The subjective world of depression was characterized by an altered experience of emotions and body (feeling overwhelmed by negative emotions, unable to experience positive emotions, stuck in a heavy aching body drained of energy, detached from the mind, the body and the world); an altered experience of the self (losing sense of purpose and existential hope, mismatch between the past and the depressed self, feeling painfully incarcerated, losing control over one's thoughts, losing the capacity to act on the world; feeling numb, empty, non-existent, dead, and dreaming of death as a possible escape route); and an altered experience of time (experiencing an alteration of vital biorhythms, an overwhelming past, a stagnation of the present, and the impossibility of the future). The experience of depression in the social and cultural context was characterized by altered interpersonal experiences (struggling with communication, feeling loneliness and estrangement, perceiving stigma and stereotypes), and varied acrossdifferentcultures, ethnic or racial minorities, and genders. The subjective perception of recovery varied (feeling contrasting attitudes towards recovery, recognizing recovery as a journey, recognizing one's vulnerability and the need for professional help), as did the experience of receiving pharmacotherapy, psychotherapy, and social as well as physical health interventions. These findings can inform clinical practice, research and education. This journey in the lived experience of depression can also help us to understand the nature of our own emotions and feelings, what is to believe in something, what is to hope, and what is to be a living human being.

Development, reach, acceptability and associated clinical changes of a group intervention to improve caregiver-adolescent relationships in the context of adolescent depression.

Adolescents with depression often experience relationship problems with their caregivers, which predict poorer treatment outcomes. Personalising interventions by targeting factors associated with poor treatment outcomes may enhance the effectiveness of interventions. We report the development and initial evaluation of an intervention designed to target caregiver-adolescent relationship problems in the context of adolescent depression. Following a literature search to identify established caregiver interventions, we developed a new group intervention for caregivers through an iterative process including six rounds of the group with n=53 caregivers of adolescents age 13-18 in the context of an integrated care pathway for adolescent depression. Caregivers rated their family functioning at the beginning and end of the program and provided anonymous satisfaction ratings. Enrolment and attendance data were examined. Youth with lived experience of depression and their caregivers provided input that was incorporated in the final version of the intervention. The final intervention consists of 8 weekly, 1.5h group sessions, delivered face-to-face, addressing: psychoeducation, the cognitive-behavioural model and caregiving, positive caregiving, listening and validation, expressing emotions effectively, and problem solving. Reach (56%), attendance (M=63%, SD=31%), and satisfaction (M=92%; SD=7%) supported the feasibility of the program. Caregivers reported significant improvements in family functioning, t(21)=2.68, p=.014, d z=0.56 [95% CI 0.11-1.0]. A group intervention is acceptable to caregivers of adolescents with depression and may be associated with improved family functioning. Further research is needed, including a randomised controlled trial to test effects of the intervention on various dimensions of the caregiver-youth relationship and on youth depression outcomes.

Development of mental health first-aid guidelines for depression: a Delphi expert consensus study in Argentina and Chile

BackgroundDepression is one of the most common mental health problems worldwide and, while prevalence rates in Latin America are relatively high, most people who meet the criteria for diagnosis do not receive treatment. Family and friends of a person with depression can play an important role in supporting a person to seek and engage with treatment. However, many people do not have the necessary skills or confidence to help. English-language mental health first aid guidelines have been developed to support people to provide such help. The aim of this study was to culturally adapt these guidelines for Chile and Argentina.MethodsA Delphi expert consensus study was conducted with two expert panels, one of people with lived experience of depression (either their own or as a carer; n = 26) and one of health professionals (n = 29). Overall, 172 statements from the English-language guidelines were translated and compiled into a questionnaire. Participants were asked to rate statements based on how essential or important those statements were for Chile and Argentina and to suggest new statements if necessary.ResultsData were obtained over two survey rounds. Consensus was achieved on 172 statements. A total of 137 statements were adopted from the English-language guidelines, whereas 35 new endorsed statements were generated from panel suggestions. There were similarities between the English-language guidelines and those for Chile and Argentina. The adapted guidelines did not include some of the items from the English-language guidelines related to commenting on a person’s strengths or making judgements about their character, and also incorporated new items related to the incorporation of sociocultural considerations as causes of depression and attention to inequities in mental health.ConclusionsThe significant number of new items underscores the importance of undertaking a careful process of cultural adaptation. Further research on dissemination and incorporation of the guidelines into the Mental Health First Aid training course for Chile and Argentina is still required.

A Digital Single-Session Intervention Platform for Youth Mental Health: Cultural Adaptation, Evaluation, and Dissemination

Despite the proliferation of evidence-based digital mental health programs for young people, their low uptake and inconsistent implementation preclude them from benefiting youths at scale. Identifying effective implementation strategies for evidence-based supports is especially critical in regions where treatment access is lowest owing to mental health provider shortages. The goal of this academic-community partnership, funded by the City of San Antonio Metropolitan Health District, was to culturally adapt, disseminate, and gauge the acceptability and utility of an evidence-based digital mental health platform-Project Youth Empowerment and Support (YES)-among English- and Spanish-speaking youths living in south Texas. Project YES is an open-access, anonymous platform containing 3 evidence-based, self-guided interventions for youth mental health. Project YES was culturally adapted via focus groups and co-design sessions with San Antonio youths with lived experience of depression and anxiety; translated into Spanish; and disseminated throughout San Antonio, Texas, via community and school partnerships. During the project period (April 2021 to December 2021), 1801 San Antonio youths began and 894 (49.64%) of them completed a 30-minute, single-session intervention within Project YES (aged 11-17 years; n=718, 39.87% male; n=961, 53.36% female; and n=3, 0.17% intersex; n=1477, 82.01% Hispanic; n=77, 4.28% non-Hispanic White; n=113, 6.27% Black; n=28, 1.55% Asian; and n=93, 5.16% other). This completion rate (49.64%) surpassed those previously observed for Project YES (eg, 34% when disseminated via social media). San Antonio youths rated Project YES as highly acceptable across all metrics, both in English and Spanish. In addition, the youths who completed Project YES-ENGLISH reported significant improvements in hopelessness (Cohen d=0.33; P<001), self-hate (Cohen d=0.27; P<001), and perceived agency (Cohen d=0.25; P<001) from before to after the intervention, and the youths who completed Project YES-SPANISH reported significant improvements in self-hate (Cohen d=0.37; P=.049) from before to after the intervention. The results indicate that Project YES-an open-access, free, and anonymous web-based single-session intervention platform-is an acceptable, accessible, and applicable mental health support for English- and Spanish-speaking San Antonio youths.

Antidepressants: A content analysis of healthcare providers' tweets

BackgroundAntidepressants are the primary treatment for depression, and social support from social media may offer another support route. Whilst Twitter has become an interactive platform for healthcare providers and their patients, previous studies found low engagement of healthcare providers when discussing antidepressants on Twitter. This study aims to analyse the Twitter posts of healthcare providers related to antidepressants and to explore the healthcare providers' engagement and their areas of interest. MethodTweets within a 10-day period were collected through multiple searches with a list of keywords within Twitter. The results were filtered against several inclusion criteria, including a manual screening to identify healthcare providers. A content analysis was conducted on eligible tweets where correlative themes and subthemes were identified. Key findingsHealthcare providers contributed 5.9% of the antidepressant-related tweets (n = 770/13,005). The major clinical topics referred to in the tweets were side effects, antidepressants for the treatment of COVID-19, and antidepressant studies of psychedelics. Nurses posted more tweets sharing personal experiences with commonly negative attitudes, in contrast to physicians. Links to external webpages were commonly used among healthcare providers, especially users representing healthcare organisations. ConclusionsA relatively low proportion of healthcare providers' engagement on Twitter regarding antidepressants (5.9%) was identified, with a minimal increase throughout the COVID-19 pandemic when compared to previous studies. The major clinical topics referred to in the tweets were side effects, antidepressants for the treatment of COVID-19 and antidepressant studies of psychedelics, which have been made publicly available. In general, the findings confirmed that social media platforms are a mechanism by which healthcare providers, organisations and students support patients, share information about adverse drug effects, communicate personal experiences, and share research. It is plausible that this could impact the belief and behaviours of people with lived experience of depression who may see these tweets.

Cultural adaptation of the mental health first aid guidelines for depression in Brazil: a Delphi expert consensus study

BackgroundDepression is a significant contributor to disability in Brazil, with most Brazilians affected by depression receiving no treatment. As the community, including family and friends, plays a crucial role in providing support for someone with depression, it is important that evidence-based resources are available to support people who wish to help. The aim of this study was to culturally adapt the English-language mental health first aid guidelines for assisting a person with depression for the Brazilian culture.MethodsA Delphi expert consensus study was conducted, with two expert panels; health professionals (n = 29) and people with lived experience of depression (n = 28). One hundred and seventy-four statements from the English-language guidelines were translated into Brazilian Portuguese and administered as a survey. Participants were asked to rate statements based on how appropriate those statements were for the Brazilian culture and to suggest new statements if appropriate.ResultsData were collected over two survey rounds. Consensus was achieved on 143 statements. A total of 133 statements were adopted from the English-language guidelines, whereas 10 new endorsed statements were generated from suggestions of the two expert panels.ConclusionsThere were similarities between the English-language and Brazilian guidelines, mainly related to family involvement and the value of empathy. More research on dissemination and incorporation of the guidelines into the Mental Health First Aid (MHFA) training course for Brazil is required.

Lived experiences matter: The role of mental health professionals' psychological crises and vulnerability in shaping their health beliefs and concepts.

Mental health professionals are often affected by mental health problems and disorders. Yet, the effects of these lived experiences on their causal beliefs and health concepts have not been investigated. The current study investigates how professionals' lived depressive experiences and their perceived vulnerability to mental illness affect their causal beliefs about mental disorders, their general concept of mental health and their specific concepts of depression and burnout. An online survey was conducted with 218 mental health professionals from 18 psychiatric clinic departments in the German federal states of Berlin and Brandenburg, investigating their experiences with depression, self-assessed vulnerability, their causal beliefs of mental illness, their general health concept and specific illness concepts of depression and burnout. A path model was calculated to examine the relationships between these variables. Participants with and without lived experience of depression were grouped. Lived experience of depression was indicated by 126 participants. For participants with no experience of depression, perceived vulnerability negatively predicted beliefs in biological causation, which positively predicted higher differentiation between depression and burnout. For participants with previous depression experiences, perceived vulnerability positively predicted beliefs in psychological and social causation. Continuum belief was predicted only in this group by the three variables of causal beliefs. Psychological and social causation was positively associated, while biological causes were negatively associated with continuum beliefs. Mental health professionals are not external to the clinical situation. Their lived experiences do matter, shaping their beliefs and concepts and, thus, possibly also their actions toward patients.

Depression Detectives (Citizen Science)

Depression Detectives was a (pilot) online user-led citizen science project which ran between Feb-Sep 2021. It brought together people with lived experience of depression, and researchers who study it, as EQUAL partners. Each participant gave as much or as little time as suited them. &#x0D; Method: Depression Detectives took part in Q&amp;A sessions where they quizzed scientists and discussed where there were gaps in the research. They then designed their own research study.&#x0D; From a huge list of over 50 potential research areas, the group settled on the question: “Do people report all episodes of depression to their GP? And if not, why not?” They looked at this in two ways:&#x0D; &#x0D; A data science project, carried out by PhD student, Melissa Lewins.&#x0D; A set of Focus group questions and an anonymous survey that were answered by members of the Facebook Group.&#x0D; &#x0D; Results: Focus group / Survey: 84% of our respondents had gone to the doctors with half or less of their episodes of depression. Many went only with their more serious episodes or when they needed practical help (e.g. to be signed off work). Half of them had regretted not going afterwards.&#x0D; 50% had used private talking therapy instead. Many had managed their episodes using things like exercise, meditation, yoga or social contact. Thus, many of the ways they treated their depression would not be visible within their health records (i.e. not available to data science researchers).&#x0D; UK Biobank 1,342 people within UK Biobank answered questionnaires in a way that suggested they had experienced depression AND had given permission for UK Biobank to analyse their GP records. Of those, Melissa found that 67% had no mention of depression in their GP records.&#x0D; Impact Public&#x0D; “ I liked the way that participants were involved in at an early stage. It felt like we had more influence and choice because of this. It's much more meaningful to involve people early in the project, before major decisions have been made.” All of the participants spoke about their realisation that depression is more complex than they had realised. Some felt more motivated to read research literature. Others had developed a more critical perspective on research and its limitations. One person said they would approach their health-care provider differently – giving more information about complexities/comorbidities. Depression Detectives was not a peer support project, but participants still benefitted immensely from sharing experiences. All interviewees said that they would take part again / recommend to others.&#x0D; Researchers “We discovered that things researchers might take for granted are unknown by the public and vice versa.” “Insightful directions for future research.” “Really useful to get the opinions of people with lived experience over time.”&#x0D; Dissemination of Results A short report and infographics for researchers, GPs, policymakers and patients can be found on our blog: https://blogs.ed.ac.uk/depressiondetectives/&#x0D; This project was a collaboration between Edinburgh Neuroscience and Public Engagement Practitioner Sophia Collins and her team. It was funded by the MRC and Horizon 2020.

What treatment outcomes matter most? A Q-study of outcome priority profiles among youth with lived experience of depression

Interest in youth perspectives on what constitutes an important outcome in the treatment of depression has been growing, but limited attention has been given to heterogeneity in outcome priorities, and minority viewpoints. These are important to consider for person-centred outcome tracking in clinical practice, or when conducting clinical trials targeting specific populations. This study used Q-methodology to identify outcome priority profiles among youth with lived experience of service use for depression. A purposive sample of 28 youth (aged 16–21 years) rank-ordered 35 outcome statements by importance and completed brief semi-structured interviews eliciting their sorting rationales. By-person principal component analysis was used to identify outcome priority profiles based on all Q-sort configurations. Priority profiles were described and interpreted with reference to the qualitative interview data. Four distinct outcome priority profiles were identified: “Relieving distress and experiencing a happier emotional state”; “Learning to cope with cyclical distressing emotional states”; “Understanding and processing distressing emotional states”; and “Reduced interference of ongoing distressing emotional states with daily life”. All four profiles prioritised improvements in mood and the ability to feel pleasure but differed in the level of importance assigned to learning coping skills, processing experiences, and the reduced interference of depression with life and identity. As part of a person-centered approach to care delivery, care providers should routinely engage young people in conversation and shared decision-making about the types of change they would like to prioritise and track during treatment, beyond a common core of consensus outcomes.

Recovery from depression: re-envisioning the connection between recovery and spirituality

PurposeThis paper aims to respond to the following question: What does ongoing recovery from depression look like, and what role might spirituality have for individuals’ meanings of recovery if it has any meaning at all?Design/methodology/approachIn this paper, the authors reconceptualize recovery from depression as ritual, as ongoing recovery, or recovery as a process, resonated with many of the 40 participants (all ages) from the study, and much of the sociological literature on recovery from depression (Fullagar and O’Brien, 2012; Garrett, 1997, 1998; Karp, 1994, 1996, 2016; O’Brien, 2012). To explore the interplay between participants’ accounts of recovery as ongoing, and the meanings of spirituality, the authors used a ritual analysis inspired by Collins (2004).FindingsFrom the accounts presented in this paper, the authors suggest that participants are, if subconsciously, using objects with a special or spiritual significance to filter through their thoughts and memories as a way to create what Collins (2004) calls an emotional charge. The authors argue that these emotional charges assist people with lived experiences of depression in distancing from, and reconnecting to, certain social ties, including a particular family member, friend or social group, as part of their recovery. The authors are calling this process, ritual distancing.Originality/valueRecovery from depression includes a process of reconnection to the self and others, and this process sometimes includes a self-defined spirituality (in objects and social connections).

Consumer-Guided Development of an Engagement-Facilitation Intervention for Increasing Uptake and Adherence for Self-Guided Web-Based Mental Health Programs: Focus Groups and Online Evaluation Survey

BackgroundSelf-guided web-based mental health programs are effective in treating and preventing mental health problems. However, current engagement with these programs in the community is suboptimal, and there is limited evidence indicating how to increase the use of existing evidence-based programs.ObjectiveThis study aims to investigate the views of people with lived experience of depression and anxiety on factors influencing their engagement with self-guided web-based mental health (e–mental health) programs and to use these perspectives to develop an engagement-facilitation intervention (EFI) to increase engagement (defined as both uptake and adherence) with these programs.MethodsA total of 24 community members (female=21; male=3) with lived experience of depression and anxiety or depression or anxiety alone participated in 1 of 4 focus groups discussing the factors influencing their engagement with self-guided e–mental health programs and the appearance, delivery mode, and functionality of content for the proposed EFI. A subsequent evaluation survey of the focus group participants (n=14) was conducted to evaluate the resultant draft EFI. Data were thematically analyzed using both inductive and deductive qualitative methods.ResultsParticipants suggested that the critical component of an EFI was information that would challenge personal barriers to engagement, including receiving personalized symptom feedback, information regarding the program’s content or effectiveness and data security, and normalization of using e–mental health programs (eg, testimonials). Reminders, rewards, feedback about progress, and coaching were all mentioned as facilitating adherence.ConclusionsEFIs have the potential to improve community uptake of e–mental health programs. They should focus on providing information on the content and effectiveness of e–mental health programs and normalizing their use. Given that the sample comprised predominantly young females, this study may not be generalizable to other population groups. There is a strong value in involving people with a lived experience in the design and development of EFIs to maximize their effectiveness.

Advancing Research to Eliminate Mental Illness Stigma: The Design and Evaluation of a Single-Arm Intervention Among University Students in Singapore.

BackgroundAnti-stigma interventions for school and college students have been studied in several countries, but to the best of our knowledge, this has not been addressed in Singapore. The current study was designed to address this lacuna and aimed to evaluate the effectiveness of an anti-stigma intervention focusing on depression among university students in Singapore.MethodsA one-off intervention comprising education and personal contact with a person with lived experience of depression was carried out in nine consecutive sessions over 6 months (October 2018 to April 2019) among 390 university students. Knowledge of depression and extent of stigma toward mental illness were assessed pre- and post-intervention as well as at 3-month follow-up.ResultsThe intervention was effective in improving depression knowledge (d = 1.09; p < 0.001), as well as reducing social distancing (d = 0.54; p < 0.001) and personal stigma (dangerous/undesirable: d = 0.60; p < 0.001 and weak not sick: d = 0.10; p < 0.033) pre- to post-intervention as well as pre- intervention to 3-month follow-up (p < 0.005).LimitationsWhile 3-month follow-up data indicates favorable medium-term impact on knowledge and stigma; the study lacks long-term follow-up to examine the impact of anti-stigma interventions across time. The data were collected through self-report measures; however, social desirability bias is possible despite the assurances of confidentiality.ConclusionGiven the impact of the intervention, there is a need to consider the feasibility, challenges, and enablers of implementation of such interventions into the curriculum of university students to ensure a broader and sustained outreach and stigma reduction.

Reflections on my role as a mental health service user co-applicant in a randomized control trial

This is not a research paper but a personal and collective reflection of patient and public involvement (PPI) for the LIGHTMind 2 randomized control trial (www. isrctn. com/ISRCTN13495752). This trial compares two guided self-help psychological interventions for depression, and is delivered in the UK NHS Improving Access to Psychological Therapy services. The paper is the result of my reviewing our PPI 18 months into the trial. The PPI includes myself as a research team member and co-applicant, with lived experience of depression, mindfulness and cognitive behaviour therapy. There is a Lived Experience Advisory Panel of six people with lived experience of depression or mindfulness, who advise the researchers. Two people with lived experience of mental health difficulties and knowledge of PPI attend the Trial Steering Committee. This paper includes comments from some of the other people with lived experience and from researchers involved in the trial, included as co-authors. I offer the Johari window (Luft, 1970) and the 4Pi National Involvement Standards (NSUN, 2018) as a way of positioning the value of PPI. Developing relationships within PPI is identified as a way of moderating the fear that some people experience as they work with researchers. I describe the importance of principles that incorporate explicit statements about the value of PPI.

Effectiveness of Peer-Supported Computer-Based CBT for Depression Among Veterans in Primary Care

This study tested whether computerized cognitive-behavioral therapy for depression supported by a peer specialist with lived experience of depression (PS-cCBT) improves mental health-related outcomes for primary care patients. In the U.S. Department of Veterans Affairs, primary care patients with a new diagnosis of depression (N=330) were randomly assigned to 3 months of PS-cCBT or a usual-care control condition. Linear mixed-effects models were used to assess differences in depression symptoms, general mental health status, quality of life, and mental health recovery measured at baseline and 3 and 6 months. In adjusted analyses, participants who received PS-cCBT experienced 1.4 points' (95% confidence interval [CI]=0.3-2.5, p=0.01) greater improvement in depression symptoms on the Quick Inventory of Depression Symptomatology-Self Report at 3 months, compared with the control group, but no significant difference was noted at 6 months. PS-cCBT recipients also had 2.6 points' (95% CI=0.5-4.8, p=0.02) greater improvement in quality of life at 3 months on the Quality of Life Enjoyment and Satisfaction Questionnaire Short Form and greater improvement in recovery on the Recovery Assessment Scale at 3 months (3.6 points; 95% CI=0.9-6.2, p=0.01) and 6 months (4.5 points; 95% CI=1.2-7.7, p=0.01). PS-cCBT is an effective option for improving short-term depression symptoms and longer-term recovery among primary care patients newly diagnosed as having depression.

Collaborating with individuals with lived experience to adapt CANMAT clinical depression guidelines into a patient treatment guide: The CHOICE-D co-design process.

Effective treatment of depression involves collaboration with informed patients and families and appropriate knowledge sharing. We describe here our experience, as a case example, of a collaboration to "translate" a clinical guideline designed for practitioners into an accessible, plainlanguage version that patients and families can use during the care process, both to provide basic educational information and to foster informed discussions with their treatment providers. Content experts in knowledge translation, patient advocacy, patient-oriented research, and psychiatry guided overall project design. Our first step was to identify lived experience writers to join in the codesign and co-writing of the "CHOICE-D Patient and Family Guide to Depression Treatment." A national call for writers attracted 62 applicants, from whom eight individuals with lived experience of depression and writing experience were selected. Individuals subsequently attended a welcoming teleconference, followed by a 1-day workshop designed to provide (a) a detailed overview of the clinician guideline, (b) an opportunity to select what should be included in the Guide, and (c) key principles of knowledge translation/lay writing. Both from the workshop and subsequently through the codesign process, lived experience writers recommended that the Guide address symptoms, effects of illness course on treatment, first-line treatments, safety/side effects, and treatment misconceptions. To promote patient autonomy, question scripts (how and what to ask your treatment provider), self-triaging resources, and treatment selection aids were suggested. Stylistic considerations included use of simple yet hopeful language, brevity, white space, key terms glossary, and graphics. Several strategies were particularly useful to optimize writer engagement in the codesign process: a pre-workshop conference call and circulation of project resources, an in-person workshop to increase content knowledge, structured discussion with co-writers and project leads to develop ideas, and practical training exercises with the provision of feedback. Both during and at the end of the project, writers provided additional recommendations for improving the process, including more in-person meetings, distribution of step-by-step instructions on the writing task, and a key terms glossary of technical terms to support their role. In conclusion, we describe a process with practical tips and reflective feedback on important considerations for engaging persons with lived experience as leaders in the codesign and writing process of lay treatment guidelines. These methods may serve as a model for similar projects in other areas of healthcare.

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

Plain English summaryThe Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages. The year long project culminated with a facilitated session to identify the top essential areas of depression research focus. People with lived experience were engaged as part of the project’s Steering Committee, as survey participants and as workshop participants. It is hoped this process will guide future priority setting opportunities and advance depression research in Alberta.BackgroundThe Depression Research Priority Setting (DRPS) project has the clear aim of describing the patient engagement process used to identify depression research priorities and to reflect on the successes of this engagement approach, positive impacts and opportunities for improvement. To help support patient-oriented depression research priority setting in Alberta, the Patient Engagement (PE) Platform of the Alberta Strategy for Patient Oriented Research Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit designed, along with the support of their partners in addictions and mental health, an explit process to engage patients in the design and execution of the DRPS.MethodsThe UK’s James Lind Alliance (JLA) Priority Setting Partnership (PSP) method was adapted into a six step process to ensure voices of “people with lived experience” (PWLE) with depression were included throughout the project stages. This study uses an explicit and parallel patient engagement process throughout each estage of the PSP designed by the PE Platform. Patient engagement was divided into a five step process: i) Awareness and relationship building; ii) Co-designing and co-developing a shared decision making process; iii) Collaborative communication; iv) Collective sensemaking; and v) Acknowledgement, celebration and recognition. A formative evaluation of the six PE processes was undertaken to explore the success of the parallel patient engagement process.ResultsThis project was successful in engaging people with lived depression experience as partners in research priority setting, incorporating their voices into the discussions and decisions that led to the top 25 depression research questions.ConclusionsThe DRPS project has positively contributed to depression research in Canada by identifying the priorities of Albertans who have experienced depression for depression research. Dissemination activities to promote further knowledge exchange of prioritized research questions, with emphasis on the importance of process in engaging the voices of PWLE of depression are planned.

Reconstructing my identity

PurposeThe purpose of this paper is to offer an insight into mental health illness in academia, and its impact on academic identity.Design/methodology/approachThe study adopts an evocative autoethnographic approach, utilising diary entries collected during the author’s three-month absence from her university due to depression and anxiety. A contemporary methodology, autoethnography seeks to use personal experience to provide a deeper understanding of culture. In this personal story, the author explores her decline in mental health and subsequent re-construction of her academic identity in order to enhance understanding of the organisational culture of higher education.FindingsThis paper illustrates how, rather than being an achievement, academic identity is an ongoing process of construction. Although mental health illness can contribute to a sense of loss of self, identity can be re-constructed during and after recovery. Autoethnographic explorations of depression and anxiety in higher education provide a deeper understanding of an often stigmatized issue, but researchers should be alive to the political and ethical pitfalls associated with deeply reflexive research.Originality/valueThere is little autoethnographic research on mental health illness in a university setting. This paper offers unique insights into the lived experience of depression and anxiety in the context of academic life, through the lens of academic identity.

Evidence-based poetry: using poetic representation of phenomenological research to create an educational tool for enhancing empathy in medical trainees in the management of depression

ABSTRACTCurrent medical education provides insufficient training in clinical empathy, which is important when caring for mentally ill patients Reading and discussing poetry are promising methods for developing clinical empathy. This qualitative study aims to improve empathy in medical students and practitioners towards patients with depression, by creating poetry as a medical education intervention. Five patients with depression shared their lived experience of depression in focus groups. For each of the nine major symptoms of depression, three types of poems were created: found poems using poetic condensation of phenomenological data, thematic poems based on thematic analysis, and freestyle poems. Participants with depression evaluated the poems. 26 out of 30 poems were felt to capture the lived experience of depression, and all three types of poetry were effective. Incidentally, themes of stigmatization and lack of empathy also emerged. Further directions include publishing and studying whether these poems improve empathy in medical trainees.

The mental health community: An underserved and undertreated population: Encouraging research but challenges remain

The mental health community: An underserved and undertreated population: Encouraging research but challenges remain