Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review by Tim J Croudace, Margaret A Taylor, Margot McBride, Fiona E Muir

“…No studies specifically focused on perceptions of the diagnostic journey, but some eligible studies made minor reference to this and are included.Conclusions This review highlights the profound impact of adenomyosis and is the first to explore the lived experiences and the diagnostic journey. Understanding the burdens of disease in terms of perceptions and lived experience in combination with the experiences of diagnostic interactions is vital to improving diagnostic pathways. …”
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Omega-3 supplements in the prevention and treatment of youth depression and anxiety symptoms: A scoping review. by Natalie M Reily, Samantha Tang, Ashlee Negrone, Daniel Z Q Gan, Veronica Sheanoda, Helen Christensen

“…A stakeholder group including young people with lived experience of anxiety/depression, parents/carers and mental health professionals informed the research questions and data interpretation. …”
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Physicians’ moral distinctions between medical assistance in dying (MAiD) and withdrawing life-sustaining treatment in Canada: a qualitative descriptive study by Midori Matthew, Kieran Bonner, Andrew Stumpf

“…This research captures meaningful accounts regarding MAiD and WLT that is rooted in the lived experience of the providers of these services in order for bioethical debates to have substantive impact in clinical practice and in legislation surrounding future health policies.…”
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The Strength of a Story: Partnering With a Community Organization to Destigmatize Substance Use Disorder by Noah Sorkow, Cameron Lauf, Stephen H. Berns

“…Students appreciated the small-group format and hearing someone's lived experience/perspective. Community members expressed how the session helped humanize health care providers and had interest in participating in future sessions. …”
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The meaning of trust along the treatment pathway of women with breast cancer: a mixed-methods study among cancer survivors by Eleonore Baum, Daniela Bernhardsgrütter, Ramona Engst, Carola Maurer, Jessica Ebneter, Adrienne Zenklusen, Barbara Wartlsteiner, Lotti Barandun, Andrea Neher, Antje Koller, Andrea Kobleder

“…The conceptual model of trust should receive attention to bring care closer to the women’s lived experience so that their care experience can be improved.…”
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The Managers' Perceptions of Telework Implementation Requirements in the Algerian Companies: A Post Covid-19 Assessment by Riad BENGHEBRID

“…Research Limitations/Future Research: The Covid-19 crisis was the starting point for talking about telework, because it was a direct reason behind the exploration of this method of managing labor relations by many Algerian companies, which continued to be used even after the end of the crisis. However, this lived experience for more than Four years in this manner opened the door to discussion of many problems related to capabilities, protection, control, etc. …”
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Recommendations for improving accessibility of digital health interventions for cardiometabolic disease for ethnically diverse populations by Mel Ramasawmy, Nushrat Khan, David Sunkersing, Madiha Sajid, Shivali H Modha, Manoj Mistry, Wasim Hanif, Fiona Stevenson, Kiran Patel, Kamlesh Khunti, Paramjit Gill, Lydia Poole, Amitava Banerjee

“…A one-day workshop was held in May 2023 with key stakeholders, including people with lived experience, health professionals, technology innovators and policymakers ( n  = 34), to develop recommendations arising from the DISC study findings. …”
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Access to Diagnostics and Treatment for People With Metastatic EGFR-Positive NSCLC: Lessons From Project PRIORITY by Jill Feldman, MA, Ivy Elkins, MBA, Zofia Piotrowska, MD, Bellinda L. King-Kallimanis, PhD, Tendai Chihuri, MD, Carly Johnson, BS, Alecia Clary, PhD, Teri Kennedy, MA, Upal Basu Roy, PhD, MPH

“…Introduction: The treatment landscape for people diagnosed with EGFR-mutated (EGFR-m) NSCLC has rapidly evolved, yet there remains limited self-reported information about the lived experience. In this paper, we describe the clinical characteristics and treatment experiences of people living with EGFR-m lung cancer from Project PRIORITY, a patient-driven study. …”
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Self-Harm in Eating Disorders (SHINE): a mixed-methods exploratory study by Maria Michail, Helen Bould, Anna Lavis, Sheryllin McNeil, Anthony Winston, Kalen Reid, Christina L Easter, Rosina Pendrous

“…We anticipate disseminating findings to clinical, academic and lived experience audiences, at academic conferences, through peer-reviewed articles, and through various public engagement activities (eg, infographics, podcasts).…”
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Varying circumstances surrounding opioid toxicity deaths across ethno-racial groups in Ontario, Canada: a population-based descriptive cross-sectional study by Tara Gomes, Mina Tadrous, Sophie A Kitchen, Frank Crichlow, Tonya J Campbell, Cynthia Damba, Colin H Johnson, Ashley Smoke

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Designing the First Pregnancy Guaranteed Income Program in the United States: Qualitative Needs Assessment and Human-Centered Design to Develop the Abundant Birth Project by Deborah Karasek, Jazzmin C Williams, Michaela A Taylor, Monica M De La Cruz, Stephanie Arteaga, Sabra Bell, Esperanza Castillo, Maile A Chand, Anjeanette Coats, Erin M Hubbard, Latriece Love-Goodlett, Breezy Powell, Solaire Spellen, Zea Malawa, Anu Manchikanti Gomez

“…MethodsThe research team included community researchers, community members with lived experience as Black or Pacific Islander pregnant, and parenting people in the San Francisco Bay Area. …”
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An exploration of desired abstinent and non-abstinent recovery outcomes among people who use methamphetamine by Alex Elswick, Amanda Fallin-Bennett, Karen L. Roper, Evan Batty, Christopher J. McLouth, William Stoops, Hilary L. Surratt, Carrie B. Oser

“…Conclusion Our findings indicate the importance of non-abstinent recovery outcomes among PWUM, suggesting high acceptability of non-abstinent recovery targets by people with lived experience. Further, the essential importance of non-abstinent outcomes, especially in the financial/social/relationship and mental health domains, were highlighted, providing novel targets for delivering SUD treatment/recovery.…”
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The impact of COVID-19 on the social and cultural integration of international students: a literature review by Cristina Sin, Orlanda Tavares, Elina Apsite-Berina, Judith Borràs, Betül Bulut-Sahin, Martina Chrančoková, Karolina Czerska-Shaw, Anne Marie Devlin, Sybille Heinzmann, Suvi Jokila, Anita Kéri, Ivana Lešević, Annarita Magliacane, Anna Nicolaou, Neslihan Onder-Ozdemir, Adriana Perez-Encinas, Natassa Raikou, Maria Victoria Soule, Deimantas Valančiūnas, Ana Iolanda Voda, Merve Zayim-Kurtay

“…Common to international students’ lived experience was (dis)connectedness, with the following themes emerging as obstacles to their social and cultural integration: distress during lockdown periods, disruption of their social life and support networks, mental health issues, discrimination and racialised prejudice, and language barriers. …”
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The roadmap to integrate diversity, equity, and inclusion in hematology clinical trials: an American Society of Hematology initiative by Alice Kuaban, Alysha K. Croker, Jeffrey Keefer, Leonard A. Valentino, Barbara E. Bierer, Stephen Boateng, Donna DiMichele, Patrick Fogarty, C. Michael Gibson, Anna M. Hood, Lloryn Hubbard, Antonella Isgrò, Karin Knobe, Leslie Lake, Iman Martin, Michel Reid, Jonathan C. Roberts, Wendy Tomlinson, Lanre Tunji-Ajayi, Harriette G.C. Van Spall, Caroline Voltz-Girolt, Allison P. Wheeler, Alan E. Mast, Stephanie Seremetis

“…Eight issues identified include (1) harmonization of demographic terminology; (2) engagement of lived experience experts across the entire study timeline; (3) awareness of how implicit biases impede patient enrollment; (4) the need for institutional review boards to uphold the justice principle of clinical trial enrollment; (5) broadening of eligibility criteria; (6) decentralized trial design; (7) improving access to clinical trial information; and (8) increased community physician involvement. …”
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Syrian refugee and diaspora healthcare professionals: Case studies from the eastern mediterranean and European regions by Aula Abbara, Munzer Alkhalil, Kinan Wihba, Omer Abdrabbuh, Diana Rayes, Andrew Ghobrial, Manar Marzouk, Fadi Halabi, Mahmoud Hariri, Abdulkarim Ekzayez

“…Methods: We completed a narrative literature review and held a closed, virtual workshop in November 2022 in which 45 participants, most of whom had lived experience in the different refugee hosting contexts, participated. …”
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Socio-economic assessment of drought impacts in Lesotho: implications for early action by Relebohile Agnes Mojaki, Makoala Vitalis Marake, Evan Easton-Calabria, Joalane Rethabile Marunye, Erin Coughlan de Perez

“…It delivers an understanding of the nature of the impacts of drought and the nature of anticipatory actions perceived as essential in reducing these impacts and, in so doing, seeks to inform policymakers on designing interventions informed by evidence on lived experience. Future humanitarian and policy interventions to prepare for droughts can use this evidence to identify the type of support that would be the most well-received by community members who are preparing for long-term drying trends in their region. …”
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The impact of nationality status and place of residency on health-related social needs and quality of life among Palestinian Refugees in Jordan by Hamza Alduraidi, Rahaf Issam Abu Zayid, Noor Mahmoud Jaber, Bassam Saleh Hijazi, Sa'ed Radwan Khamis, Hasan Fahed Awad, Marah Al-Khateeb, Saif alnour Mahmoud Aldhirat, Ahmad Amjed Toubasi

“…Further research is needed to understand the lived experience of Palestinian refugees, and the impact of lacking citizenship and residing in camps on their lives and livelihoods, especially after the coronavirus disease 2019 (COVID-19) pandemic.…”
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Using photovoice to define “community” in substance use disorder research engaging service users, providers, and policymakers by McGladrey Margaret L, Marisa Booty, Ramona Olvera, Peter Balvanz, Hilary L. Surratt, Shannon Matthews, Susannah Stitzer, Owusua Yamoah, Sylvia Ellison, Kevin Campbell, Amy Farmer, Bethany Gealy, Mike Greenwell, Felicia Harris, Amy Kuntz, Sara Szelagowski, Alexandrea Shouse, Carrie B. Oser

“…(197 words)The ideals of community-engaged health research are challenging to realize ethically and methodologically, particularly when focused on substance use disorder (SUD), in which the power differentials inherent to stigma marginalize people with lived experience (LE) as full community participants. This study provides a typology and exploratory data generated through Photovoice to understand relationships among community members with different roles related to LE of SUD (i.e., SUD service providers, service users, and the public) in the context of a large-scale community-engaged opioid overdose reduction intervention. …”
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Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study by Maria-Jose Santana, Gina Dimitropoulos, Suneeta Monga, Isabelle J Gagnon, Bruce Wright, Jananee Rasiah, Katrina Hurley, Antonia Stang, Amanda Newton, Stephen Freedman, Jennifer Thull-Freedman, Kassi Prisnie, Yazid N Al Hamarneh, Ellen Louise Lipman, Yaron Finkelstein, Robert Porter, Mohamed Eltorki, Lee Macdonald, Gareth Hopkin, Matthew Prebeg, Margaret Steele, Ahmed Mater, Laurence Katz, Brian Greenfield, Laurie Plotnick

“…In this study, the term ‘patient partner’ is inclusive of two groups of people with lived experience: (1) caregivers (parents, formal/informal caregivers and family), and (2) youth (aged 15–24 years). …”
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Public and patient involvement (PPI) in the design, execution and dissemination of a trial: the BISTRO trial by David Coyle, Paula Ormandy, Nancy Fernandes da Silva, Simon Davies

“…To support patient recruitment and participation in the research, a Patient Advisory Group was set up by the Trial Management Group led by a co-applicant with lived experience of dialysis who in the pre-funding design stage led the kidney failure patient network, hosted by the National Institute for Health and Care Research Devices for Dignity Medtech Co-operative. …”
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