From the Stacks
There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk.
Medical students’ experiences in providing medical care to older patients: A rich picture study
Emma J. Draper, Anne de la Croix, Ariadne A. Meiboom, Nynke van Dijk, Rashmi A. Kusurkar, Martin Smalbrugge
First published: January 23, 2026 Digital Object Identifier (DOI)
Abstract
Introduction
With an ageing population, future doctors must be prepared to care for older patients facing complex and often chronic needs. Despite curricular efforts, medical students often report less positive attitudes towards providing this care—shaped not only by knowledge gaps but also by cultural norms and the hidden curriculum. Little is known about how students themselves reflect on their clinical encounters with older patients. This study explores medical students' experiences providing care to older patients, and which aspects they find rewarding or frustrating.
Methods
We conducted a qualitative study based on a constructivist paradigm, using semi-structured interviews supported by a visual narrative method (rich pictures). Sixteen final-year medical students who had completed their senior internship were purposively sampled. Participants drew two ‘rich pictures’ representing one positive and one negative clinical experience involving the care of older people. These drawings were used as prompts for in-depth interviews. Data was analyzed using reflexive thematic analysis.
Results
We identified three themes that captured students' experiences: (1) feeling connected, (2) witnessing humane and compassionate care, and (3) making a difference. Rewarding experiences involved human connection, dignity, and presence—particularly in end-of-life care or when guided by compassionate role models—leading to a sense of fulfilment. Frustrating experiences arose from poor communication, systemic barriers, and unclear goals of care, leaving students feeling powerless, isolated, and emotionally burdened.
Conclusion
Students experienced care for older patients as emotionally rich and qualitatively distinct from other clinical work. This practice demands patience, presence, and the ability to navigate complexity beyond mere clinical competence. Medical education should support students in valuing care beyond cure—through fostering reflective practice, peer support, and engaged supervision—helping them reframe what it means to make a difference for older patients and their families in complex, chronic and end-of-life care.
Final-year students’ perspectives on socially responsive curricula in medical education: A qualitative case study
Anthea Hansen, Susan Van Schalkwyk, Cecilia Jacobs
First published: January 4, 2026 Digital Object Identifier (DOI)
Abstract
Introduction
There is urgency for health professionals to be better prepared to tackle health inequities. Transitioning to responsive and contextually relevant curricula is an important strategy to equip students to be both clinically competent and critically conscious of the contexts in which they provide health care. Although the literature suggests reframing medical education to be responsive, student engagement in this process remains limited. Little is known about how students understand and experience social responsiveness, or their involvement in reframing medical curricula to be more responsive. This paper, therefore, aims to explore how a medical curriculum has influenced undergraduate final-year medical students to become socially responsive.
Method
This was a qualitative exploratory case study positioned within a constructivist paradigm. Data was generated through focus group discussions and individual interviews. Rich picture drawings served as reflective prompts. Initially, 27 students participated. Three withdrew across the course of the study. Data was coded inductively and analyzed using reflexive thematic analysis. All relevant ethical and institutional approvals were granted.
Results
The findings revealed that becoming socially responsive is a complex endeavor. Four intersecting themes were identified: (i) applying a socially responsive approach to health care; (ii) the culture and traditions of medicine; (iii) shattering of mindsets and (iv) the value of the student voice in the curriculum. The students expressed that the curriculum provided opportunities to engage with concepts related to social responsiveness. However, these opportunities were less frequent and were considered less valuable when compared to biomedical knowledge. Furthermore, the cultures and traditions of medicine were seen to create conditions that position students as consumers of the curriculum.
Conclusion
This paper argues that although the curriculum is an important aspect in developing social responsiveness in students, other aspects, such as the health system and what the student brings should also be considered. Additionally, the students should be considered co-constructors of their learning and key role players in transforming curricula to be socially responsive and contextually relevant.
When I say … informed consent
Cormac McGrath, Per J. Palmgren, Matilda Liljedahl
First published: July 17, 2025 Digital Object Identifier (DOI)
Abstract
Through the latest installment of “When I Say…” the authors offer strategy for being better informed about informed consent.
Informed consent (IC) is a fundamental cornerstone in medical ethics, medical research and also medical education research.1 When we say IC in the specific context of qualitative research interviews, we are not only invoking a procedural step in research ethics but also referring to a deeper social and relational agreement between researchers and participants. This agreement between researcher and researcher participants is currently being renegotiated due to the push for data sharing in health professions education journals, as well as other research contexts. As scientific research increasingly embraces transparency and accessibility, the ‘Open Science’ movement advocates for making research data freely available.2 This shift towards openness highlights the need for researchers to navigate and reflect on the balance between ethical obligations and the benefits of widespread data sharing and accordingly reconsider what it means to ask for IC from participants in a scientific study.
Traditionally, IC has been understood as a safeguard: a shared and formalized understanding and agreement between researchers and participants in which it is clearly communicated what will happen to the data participants provide in a study and to which they voluntarily agree to take part in. However, in the context of the qualitative research interview, consent is dynamic and layered. It is not merely a procedural contract safeguarding a person's engagement in a research study; it also involves trust, context, ongoing dialogue and, critically, a clear understanding of what participants are agreeing to and what they can expect in return. Effective IC procedures must be tailored to the cultural, social, and linguistic context of participants to ensure genuine comprehension and voluntariness. Historically, IC has also implied that information shared during, for example, a research interview, remains confidential within the research team. Yet, in qualitative research, IC is not a singular event but an evolving process. Participants should be regularly reminded of their rights and the study's purpose throughout the research engagement. A research interview is a highly intimate interaction, where reflections and insights are shared, including both positive and negative experiences. In such situations, developing rapport is paramount, and the participants must feel comfortable being vulnerable and be able to share reflections on unpleasant experiences or unethical practices they may have observed or been involved in.3
Over the past two decades, publishing traditions have evolved to become increasingly open. Today, it is not uncommon that academic journals, including HPE journals, now frequently encourage and sometimes request researchers to share data as supplementary information. This encompasses not only data analysis and coding frameworks but also, in certain instances, raw data. In an era of open data, the boundaries of IC are potentially shifting. In some scientific traditions, sharing data is straightforward and is intended to maximize the reanalysis of data to generate even better and more robust scientific outcomes. The logic for such open data policies may be grounded in positivist assumptions that do not necessarily align well with the epistemological commitments of qualitative research.4
In qualitatively oriented research, where data are often personal, and deeply contextual, sharing data raises ethical dilemmas and tensions and may compromise the relational foundation of qualitative inquiry. Here, we may have even stronger incentives to reconsider what we mean when we say IC. Qualitative data collection and inquiry are typically situated, interpretive and co-constructed between researcher and participant. This contextual richness may lose nuance or risk being lost entirely when data are abstracted for reuse. In this light, the call to share qualitative data may reflect a misalignment between research practice and institutional mandates. In qualitative research, participants share their stories with the understanding that they are speaking in confidence to the researcher and that their words are held within a specific relational and temporal frame. When data are shared, especially in decontextualized repositories, participants may feel they lose control over how their narratives are interpreted, used or even misunderstood.5 More importantly, participants who are aware that their data may be widely shared may become more hesitant to share their experiences and reflections, which form the backbone of engaging qualitatively oriented research. They may fear that even anonymized data could be reidentified or misinterpreted if shared widely and out of context, and this may have an impact on people in their surroundings too. This highlights the importance of viewing IC not only as an individual agreement but as an ethical practice that also considers the potential implications for others connected to the participant. Tilley and Woodthorpe6 argue that digital technologies and new data-sharing expectations complicate traditional assurances of anonymity. In our own work, we have encountered moments where participants explicitly asked: ‘Who will hear this?’ or ‘Will this be shared with others?’ Their questions were not solely about anonymity or technical de-identification; they were about control, dignity, and trust. They reminded us that consent is not merely a formality; it is a deeply relational process.
We recognize that IC may need to evolve in response to new open data practices. Careful considerations need to be made by both researchers, editors, reviewers, and readers of health professions education journals. Measures may be taken to ensure tiered access to data. Some researchers may respond by offering more granular consent options, allowing participants to choose whether their data may be shared, with whom and under what conditions. This means a more nuanced and engaged discussion must occur between researchers and participants to convey what IC means in the context of open data. Moreover, researchers may need to explain the various scenarios in which others may have a justified right to access data. However, there is also a risk of ‘consent fatigue.’ Participants, wary of the unknown, might opt out of participating altogether or provide guarded, less open, and honest responses, thereby jeopardizing the research itself. Additionally, participants may not offer rich responses, for fear of the data being shared openly. These drawbacks are necessary to consider now that the very meaning of IC is changing.
So, when we say IC, we refer to an ongoing, situated negotiation of meaning and trust with potential participants. In an era of open science, we must ensure that our ethical frameworks develop in tandem with technological advancements. While data sharing may be a scientific ideal, IC must remain an ethical cornerstone. To uphold this, we must create space for nuance, for uncertainty and, above all, for the voices of participants to guide us, not only at the moment of signing a consent form but long after. While this text focuses on IC within qualitative research, the ethical principles it discusses, such as trust, dialogue and contextual sensitivity, are fundamental to all empirical research regardless of paradigm. As authors, we emphasize that these principles are not exclusive to any one methodology but are essential to responsible research practice across disciplines.
Author Contributions
All authors contributed equally.
Acknowledgements
Open Access provided by Stockholm University.
Data Availability Statement
Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.
Sight Restored to People Blinded in Eye Accidents Using New Stem Cell Treatment
March 7, 2025 | by Andy Corbley
People who suffered blinding eye injuries have had their sight restored using a new form of stem cell therapy.
American surgeons took stem cells from the patient’s healthy eye and transplanted them into the injured eye, successfully repairing previously “irreversible” damage.
The experimental procedure safely restored corneal surfaces in 14 patients who were followed for 18 months.
Researchers say this clinical trial shows that the experimental treatment for injuries to the cornea is both “feasible and safe.”
Called cultivated autologous limbal epithelial cells (CALEC), the treatment was developed at Massachusetts Eye and Ear, a specialty hospital located in Boston, and became the first stem cell therapy for the eye ever trialed in the United States.
The research team explained that the ground-breaking procedure consists of removing stem cells from a healthy eye with a biopsy, expanding them into a cellular tissue graft in a new manufacturing process that takes two to three weeks, and then surgically transplanting the graft into the eye with a damaged cornea.
“Our first trial in four patients showed that CALEC was safe and the treatment was possible,” said Principal investigator Professor Ula Jurkunas.
“Now we have this new data supporting that CALEC is more than 90% effective at restoring the cornea’s surface, which makes a meaningful difference in individuals with cornea damage that was considered untreatable.”
The team showed CALEC “completely restored” the cornea in 50% of participants at their three-month visit and that rate of complete success increased to 79% and 77% at their 12- and 18-month visits, respectively.
With two participants meeting the definition of partial success at 12 and 18 months, the overall success of CALEC was 92% at 18 months. Three participants received a second CALEC transplant, one of whom reached complete success by the study end visit.
Prof Jurkunas said CALEC displayed a high safety profile, with no serious events occurring in either the donor or recipient eyes. The only major adverse event, a bacterial infection, occurred in one participant, eight months after the transplant due to “chronic” contact lens use.
Other adverse events were minor and resolved quickly following the procedures.
The researchers say the study shows the “promise” of cell therapy for treating incurable conditions.
One limitation of the approach is that it is necessary for the patient to have only one involved eye so a biopsy can be performed to get starting material from the unaffected normal eye. Study team members said that an allogenic manufacturing method would, in the future, allow for CALEC to be possible in patients with two damaged eyes rather than just one.
CALEC remains an experimental procedure and is currently not offered at Mass Eye and Ear or any other hospital, and research team says additional studies will be needed before the treatment is submitted for federal approval.
“We feel this research warrants additional trials that can help lead towards FDA approval,” said Jurkunas.
“While we are proud to have been able to bring a new treatment from the lab bench to clinical trials, our guiding objective was and always will be for patients around the country to have access to this effective treatment.:
Development of PREPARE for Autistic Adults: An Adult Autism Training for Resident Physicians Designed with Autistic Adults and Family Members
by Brittany N. Hand, PhD, OTR/L.
Abstract
One barrier to meeting autistic adults’ health care needs is the dearth of physicians with autism training. We developed an adult autism training for residents who are postdoctoral physicians training to become specialists in internal medicine or family medicine. We used formative evaluation to design the training with autistic adults and family members of autistic adults, who were paid consultants. The training includes six prerecorded presentations, six case studies, and two standardized patient scenarios. We conducted focus groups and interviews with 23 residents and 14 faculty who educate residents. We described the curriculum, reviewed the content in one module, and obtained feedback on maximizing feasibility and scalability. Using semantic-level inductive rapid qualitative analysis we identified three themes and two subthemes. First, “flexibility is key” described ways to increase flexibility to accommodate resident and faculty schedules across programs. Second, “time is the most valuable asset” described the need to minimize duration and maximize impact. Third, “buy-in is necessary” described ways to increase buy-in from residents and residency leadership. Two subthemes, “we don't talk much about neurodivergence” and “this content applies to all patients,” describe how to increase buy-in by highlighting how this training fills a gap in resident education and can be generalized to multiple populations. Results highlighted ways to modify our training to maximize implement ability across different residency programs. Next steps include pilot testing of feasibility, acceptability and effects on resident self-efficacy, attitudes/beliefs, and knowledge. In the long term, we expect this will yield more adult care physicians prepared to meet autistic adults’ needs.