Experience Of Chronic Illness Research Articles

Disability, Space, and Racial Injustice: Life Writing at Angel Island Immigration Station, 1910–1940

Abstract This study integrates race and disability into a literary-historical analysis of the mostly anonymous poetry composed by Chinese migrants and inscribed onto the walls of the men's barracks of the US Immigration Station at Angel Island in San Francisco Bay, 1910–1940. Scholarship in Asian American and Asian diaspora studies has approached this body of work as a modern reinvention of traditional Chinese poetic forms within a US context. This study considers the men's barracks a protest space created under disabling conditions of confinement, and it demonstrates how Angel Island detainees critiqued the racialized and ableist systems of social control that operated at the station. The poets attest to undergoing invasive imperial regimes of bodily inspection and medicalized racial exclusion, and they document lived experiences of chronic illness, depression, and the anguished temporality of detention space. As corpus of disabled life writing by early Asian American and Asian diaspora writers, Angel Island poetry offers wider access to non-English historical vocabularies of disability as well as environmental and holistic understandings of embodied conditions beyond Western diagnostic models. As a built environmental archive and a National Historic Landmark, Angel Island is a significant cultural site for exploring how race and disability operate concurrently as social constructions.

How Do Children With Medical Complexity Die? A Scoping Review.

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.

Wait for Me: Chronic Mental Illness and Experiences of Time During the Pandemic.

As someone diagnosed with severe chronic mental illness early in my adolescence, I have spent over half of my life feeling out of step with the rest of the world due to hospitalizations, treatment programs, and the disruptions caused by anxiety, anorexia, depression, and obsessive-compulsive disorder. The effect of my mental health conditions compounded by these treatment environments means I often feel that I experience time passing differently, which results in sensations of removal and isolation from those around me. The global shutdown caused by the COVID-19 pandemic seemed a way for normative bodies to experience the passing of time the way I always have. In this paper, I extend Dr. Sara Wasson's analysis of the ways in which chronic pain resists narrative coherence to my own temporal experience of chronic mental illness, specifically my embodied experience of the pandemic. I use that embodied experience as a case study for examining how the reciprocal nature of time and narrativity, as outlined by Dr. Paul Ricoeur, can create isolation for those struggling with their temporality due to chronic mental illness. To acknowledge and grapple with the ramifications of discursive and material privilege involved in such situations, I include an analysis of Robert Desjarlais's 1994 article "Struggling Along: The Possibilities for Experience among the Homeless Mentally Ill," in which he investigates a similar phenomenon of being outside ofstructured sequential narrative timein the residents of a Boston shelter for the mentally ill.

EXPLORING EMOTION CONTROL BELIEFS ACROSS THE LIFESPAN: ROLES OF AGE AND CHRONIC ILLNESS

Abstract Existing theory and research highlights emotion control beliefs have important implications for emotion regulation and psychological well-being. Emotion control beliefs can be subdivided into four categories: the extent to which people believe 1) they can control their emotion (self-can beliefs), they should control their emotions (self-should beliefs), 3) others can control their emotions (others-can beliefs), and 4) other should control their emotions (others-should beliefs). To our knowledge, research has yet to examine how developmental factors are associated with emotion control beliefs in adults (i.e., age and non-normative experience of chronic illness). Past research highlights age related differences in emotional processes, and the influence of non-normative chronic illness on emotional well-being. Therefore, the present study utilized data from a lifespan sample of 47 participants (younger adults: n = 21, age range = 19-35, M = 27.55; older adults: n = 26, age range = 68-81, M = 72.40) to examine differences in emotion control beliefs among younger and older adults, people with and without chronic illness, and the interaction between these factors. Our analyses revealed levels of self-can beliefs were lower in people with chronic illness. In particular, younger adults with chronic illness reported the lowest levels of self-can beliefs. By contrast, among people without chronic illness, older adults reported lower levels of others-should beliefs, relative to younger adults. These findings inform theories of emotional aging, development, and health by suggesting emotion control beliefs vary with age and chronic illness.

The transitional experiences of an international student facing chronic physical illness

This article illuminates the author’s transitional experiences during a chronic physical illness in China. Although many studies have considered patients’ chronic physical illnesses, few have considered international students’ experiences of chronic physical illness by means of the narrative approach. The author examines her chronic physical illness journey based on transitional experience and narrative identity theory. The narrative indicates a sense of identity, agency, and adaptation to change, and the exploration of such experiences could significantly contribute to the literature on students’ chronic physical health from a student’s perspective.

Complexities of disability, chronic illness and able-bodied privilege

This video explores Gipsy’s lived experience of chronic illness to give an introduction to disability politics. She invites the listener to investigate their own relationship to disability and able-bodied privilege and how this may show up in their narrative work. Gipsy shares with us the methodology (participant action research) that enabled her PhD research work (on young women’s lived experience of chronic illness) to also be a tool for social change and to create a positive impact for participants by the collective coming together and sharing of stories.

Relationships Between Chronic Illness, Body Mass Index, and Patient-Provider Communication

ABSTRACT Little is known about how higher-weight patients experience patient-provider communication, particularly among those with chronic illness. This study uses quantitative analytical methods and nationally representative data to determine how patient-provider communication is affected when patients have one or more chronic illnesses, as well as if patient BMI has a moderating effect on this association. Pearson correlation and multivariate logistic regression were both used to determine the significance of these associations. A significant, negative, relationship was found between overall patient-provider communication and patient chronic illness status, but no significant relationship was found between respondent BMI and patient-provider communication. There was no observable moderation effect of respondent BMI on the relationship between their number of chronic illnesses and the perceived quality of the patient-provider communication they experienced. From this study there is evidence that patients with multiple chronic illness experience worse communication with their health care providers which could be due to numerous types of bias. More research is needed to better understand if and how weight and other bias affects outcomes for chronically ill patients. Research implications include improving the comprehensiveness of nation-wide surveys that measure health care quality to include improved measures of perceived bias, including weight bias, and patient-provider communication, as these are complex, multi-factorial concepts.

Biographical dialectics: The ongoing and creative problem solving required to negotiate the biographical disruption of chronic illness

Here we propose the term ‘biographical dialectics’ as a sister term to ‘biographical disruption’ to capture the ongoing problem solving that characterises the lives of many people living with life limiting chronic illnesses. The paper is based on the experiences of 35 adults with end-stage kidney disease (ESKD) in receipt of haemodialysis. Photovoice and semi-structured interviews showed that ESKD and the use of haemodialysis was widely agreed to be biographically disruptive. In talking about and showing disruption through photographs the participants' ongoing problem solving was universal across their diverse experiences. ‘Biographical disruption’ and Hegalian dialectical logic, are drawn on to make sense of these actions and to further understand the personal and disruptive experience of chronic illness. Based on this, ‘biographical dialectics’ captures the work that is required to account for and manage the enduring and biographical impact of chronic illness that follows the initial disruption of diagnosis and continues as life progresses.

Abstracts 13th PCNE Working Conference “Pharmacies' new roles in pharmaceutical care: bridging research and practice”

Poster abstractsPCNE abstract number 576Medication adherence assessment in patients with rare diseases—a scoping reviewMaria Kamusheva1, Iva Haygarova1, Nikolay Ganov1, Marina Pesheva1, Konstantin Tachkov1, Guenka Petrova1 1Faculty of Pharmacy, MU-Sofia, BulgariaEmail: mkamusheva@pharmfac.mu-sofia.bgBackground Medication adherence (MA) is a key factor in the achievement of therapeutic goals for patients with rare diseases (RDs). Collecting and analyzing the existing information on different aspects of MA would bring value for better and adequate support to this specific group of patients.Purpose To critically appraise, consolidate and present an overview of the scientific literature focused on MA assessment methods, influencing factors and interventions that can support patients with RDs to improve MA. The findings could be informative about the available approaches and the most studied aspects of MA in the selected group of patients.Method A scoping review was performed. The sources searched were PubMed and Google Scholar with no limit on date. A specific combination of keywords was used: medication adherence OR compliance, AND interventions OR methods, AND assessment OR evaluation, AND rare diseases AND orphan medicines OR orphan drugs. A number of inclusion and exclusion criteria were defined: studies were not excluded by publication date and type of study design. We included only English-language articles focused on methods for assessment and improvement of MA in RDs and MA importance. Studies that presented other aspects of RDs treatment and monitoring without considering MA were excluded.Findings Out of 167 screened paper, 9 were included. Twelve more studies met the criteria and were analyzed. The patients' groups varied regarding the type of RD: growth hormone deficiencies (n = 3), cystic fibrosis (n = 2), type 1 Hereditary Tyrosinemia (n = 2), acromegaly (n = 2) etc. Most studies were systematic reviews (n = 5), followed by cross-sectional studies (n = 4) and quantitative, descriptive, national cohort surveys using claims data (n = 4). The main observed aspects related to MA were the level of adherence and the influencing factors. No specific recommendations for MA improvement were given in most of the studies. Both objective (n = 1) and subjective (n = 21) methods were applied to assess the level of MA. Morisky scale and other questionnaires were the most commonly used subjective methods followed by the objective methods (dose counts, pharmacy records). The level of MA varied in different studies based on the type of therapy and RD: between 44.8% and 92.1%.Conclusion Considering the variation in MA levels, most of the authors highlighted the need for improvement of MA in patients with RDs. Development and implementation of government-supported programs and other diseases-specific methods, involving various medical specialists, are needed. FUNDING: The Bulgarian National Science Fund approved and financed the study (No. KП-06- 361 КOCT/6/14.06.2022).PCNE abstract number 579Identifying patients at high risk for drug-related problems: preliminary results of the MediPORT-studyStephanie Buchegger1, Clara Simon1, Olaf Rose2, Bernhard El-Masri1, Georg Zimmermann3, Christina Dückelmann1, Maria Flamm4, Johanna Pachmayr1 1Institute of Pharmacy, Pharmaceutical Biology & Clinical Pharmacy, Paracelsus Medical University, Salzburg, Austria, 2impac2t research, Maximilianstr. 31-33, 48147, Münster, Germany. rose@elefantenapo.de, 3Team Biostatistics and Big Medical Data, IDA Lab Salzburg, Paracelsus Medical University, Salzburg, Austria, 4Institute of General Practice, Family Medicine and Preventive Medicine, Paracelsus Medical University, Salzburg, AustriaEmail: stephanie.buchegger@pmu.ac.atBackground Prioritizing pharmaceutical care is needed to make pharmaceutical service more efficient and available for high-risk patients. Little is known about risk factors associated with drug-related problems (DRP) of patients in hospitals.Purpose The aim of this study was to identify objective and easily ascertainable factors correlated with DRP in patients undergoing elective surgery. Results contribute to the development of a Pre-Operative Risk-prediction Tool for medication review (MediPORT) at hospital admission.Method The study was a retrospective, single centre case control study. Patients ≥ 18 years, participating in a medication review (PCNE type 3) and undergoing elective surgery in 2021 were included. The sample size was calculated to reach a representative sample out of a defined study population (n = 1500), considering 5% precision and 95% CI. Outcome measures were defined on the basis of a focused literature review and of applicability on real clinical practice data. Frequencies, ranges, means and SD were used for descriptive analysis. The χ2-test, Mann–Whitney-U-Test and two sample t-test were used to measure differences in the prevalence of sociodemographic and clinical parameters in the presence of DRP. Variables were explored via binary logistic regression. Analyses were performed with IBM SPSS statistics V.27. The study protocol was approved by the local ethics committee of Salzburg County, Austria (ID: 1158/2021) and was registered in the German Clinical Trials Register (DRKS00028763).Findings According to the literature review, age, allergies, Body Mass Index (BMI), the calculated Carlson Comorbidity Index (CCI) and gender were chosen as primary outcome factors. Overall, 460 participants consisting of 169 cases (defined as patients with at least one DRP identified by pharmacists) and 291 controls (defined as patients without any detected DRPs) were analysed. Mean age of participants was 59.9 years (± 18.87). Most individuals were men (55.1%) and persons without allergies (66.1%). Mean index of chronic conditions was 1.76 (± 2.11) and mean BMI was 26.6 kg/m2 (± 5.59). Age showed a positive association with the occurrence of allergies (p = 0.010). Preliminary results of the adjusted model indicated that age and the calculated CCI were associated with a higher risk of DRP. However, these should be interpreted as associations rather than determination of causal relationships.Conclusion Risk factors for the appearance of DRP in patients undergoing elective surgery could be identified. Measures appear to be easily assessable in clinical settings and are a promising approach for the development of the MediPORT-tool.PCNE abstract number 580Evaluation of impacts of a structured counseling approach on pharmacy students’ communication confidence and skills: A mixed-mode researchYen-Ming Huang1, Yunn-Fang Ho1, Hsun-Yu Chan2, Ling-Ling Hsieh3, Ling-Jie Chen4 1Graduate Institute of Clinical Pharmacy, College of Medicine, National Taiwan University, Taipei, Taiwan, 2Department of Industrial Education, National Taiwan Normal University, Taipei, Taiwan, 3School of Pharmacy, College of Medicine, National Taiwan University, Taipei City, Taiwan, 4Chen-Fang Pharmacy, Yilan County, TaiwanEmail: yenming927@ntu.edu.twBackground Using standardized instructional methods to teach communication skills in pharmacy education is strategic to ensure high instructional quality and accountability. We provided pharmacy students with a 5-step structured counseling approach to reinforce their ability to practice counseling on over-the-counter (OTC) medications.Purpose This study engaged senior pharmacy students in applying a structured approach to counseling on over-the-counter medications during advanced experiential training. By using a mixed-mode assessment technique, we aimed to evaluate the impact of this approach on pharmacy students’ confidence and skills in counseling on over-the-counter medications.Method The structured counseling approach (SAIDS) comprised five elements: (1) Surfacing Symptoms and medication history, (2) inquiring Allergy, (3) providing medication Indication, (4) Directing correct medication use, and (5) Supporting Self-care. During six-week Advanced Community Pharmacy Practice Experiences (ACPPEs), each student provided consumers with conventional counseling and SAIDS approach on OTCs during the first three and the last three weeks, respectively. Consumer participants were recruited at six community pharmacies in Taiwan between 2020 and 2022. Self-administered questionnaires were deployed to assess consumers’ understanding of OTC use and to evaluate students’ confidence and skills in the provision of OTC counseling.Findings One hundred and fifty-nine customer participants received conventional counseling while 133 individuals got SAIDS counseling services. Consumers receiving the SAIDS medication counseling showed a significant understanding of the cautions needed to pay attention to the OTCs they purchased (p < 0.001). Thirty-one pharmacy students participated in the study and reported significantly improved confidence (p < 0.001) in OTC counseling during the 6-week ACPPE. They indicated the ACPPE provided them with opportunities to practice medication counseling independently (p = 0.023). The qualitative findings showed the SAIDS helped students prompt questions to understand consumers’ needs, recommend proper OTCs, and provide relevant information to OTC counseling. The students mentioned the SAIDS approach directed them to empathize with consumers’ discomfort, provided shared decision-making, completed the counseling loop, and empowered consumers’ self-medication. Students also pointed out consumers may not reconcile conflicting information from different channels or lack knowledge of ailments. The SAIDS approach allowed students to engage consumers in conversation to clarify key information on OTC use.Conclusion Pharmacy students reported enhanced confidence in OTC counseling and improved consumers’ understanding of OTC use under the structured SAIDS approach. Using a structured counseling approach to involve pharmacy students in OTC counseling is viable to cultivate their communication skills to assist the public in using OTC safely and effectively.PCNE abstract number 584Exploration of pediatric adverse drug reactions in Taiwan: illustrated by antibiotic- and anticonvulsant-associated liver injuryYu-Ting Huang1, Yen-Ming Huang1, Yunn-Fang Ho1 1National Taiwan UniversityEmail: r09423022@ntu.edu.twBackground Drug-induced liver injury (DILI) is an adverse reaction to medications that lead to expected or unexpected hepatotoxicity. Most DILIs in pediatrics are caused by treatment with antibiotics or anticonvulsants, while the pattern of DILI in pediatrics remains unclear in Taiwan.Purpose The study aimed to evaluate drug class, pattern, and risk of DILI among pediatrics in Taiwan.Method A retrospective analysis of the data, from May 1998 to July 2017, archived in the Taiwan National Adverse Drug Reactions Reporting System was performed. The Standardised MedDAR Queries (SMQ) was applied to obtain suspected DILI cases. The data were analyzed descriptively. We used disproportionality analysis and presented reporting odds ratio (ROR) to compare individual antibiotic or anticonvulsant DILI reports with respective antibiotic or anticonvulsant non-DILI reports.Findings A total of 484 (2.8%) suspected DILI cases out of 17,248 reports were identified, comprising 214 drugs. Suspected DILI cases were 8.0 years old (SD: 6.1; 0–18 years), predominantly girls (52.9%; boys 39.7%), and reported mainly by health professionals (71.9%). These suspected DILI cases were mainly (74.0%) designated as serious, including death, life-threatening, caused or prolonged hospitalization, and other serious adverse reactions (medically important). The most frequently observed drug classes were antibiotics (23.0%) and anticonvulsants (7.9%). Oxacillin (20.7%; ROR 5.33; CI 3.14–8.78; p-value < 0.001), isoniazid (9.0%; ROR 23.77; CI 8.83–67.92; p-value < 0.001), and rifampicin (9.0%; ROR 13.97; CI 5.71–33.48; p value < 0.001) ranked top three for antibiotics DILI. All three antibiotics were shown to be associated with DILI significantly under disproportionality analysis. Phenobarbital (31.9%), valproic acid (26.3%), and phenytoin (23.7%) were the most frequently reported anticonvulsant DILI. However, only the ROR (3.23; CI 1.39–7.02; p value = 0.008) of valproic acid truly demonstrated statistical significance.Conclusion The DILI in pediatric is rare but serious. Among common culprit antibiotics and anticonvulsants, oxacillin, isoniazid, rifampicin, and valproic acid pose greater risks for pediatric DILI and deserves clinicians’ special attention in patient care.PCNE abstract number 585Facilitating implementation of medication reviews in the community pharmacy setting: an application of the Implementation Research Logic ModelDorothee E Michel1, Antonella P Tonna1, Dorothee C Dartsch2, Anita E Weidmann3 1Robert Gordon University, Aberdeen, Scotland, 2Cap Campus Pharmazie GmbH, Hamburg, Germany, 3Universität Innsbruck, Innsbruck, AustriaEmail: doro.michel@gmx.netBackground Previous research has identified both determinants and potential strategies to facilitate implementation of medication reviews (MR). A conceptual model which links determinants, strategies to support implementation and mechanisms of change to execute implementation, with projected outcomes is helpful to plan the approach and facilitate MR-implementation.Purpose The aim of this research was to apply the Implementation Research Logic Model (ILRM) for the implementation of medication reviews in the German community pharmacy setting, and thus illustrate the links between determinants, strategies, and implementation outcomes. The resulting map is meant to inform and facilitate MR-implementation.Method The IRLM was populated with determinants (barriers and facilitators structured using the Framework for Implementation of Services in Pharmacy, FISpH), proposed strategies (according to the Expert Recommendations for Implementing Change, ERIC) and mechanisms of change which were identified in an interview study with 21 German pharmacy owners. The research team linked these with 8 implementation outcomes derived from Proctor: acceptability, adoption, appropriateness, cost, feasibility, fidelity, penetration, sustainability.Findings Twenty strategies from the interview study were mapped against 32 determinants. All strategies were hypothesised to impact on one or several of the 8 implementation outcomes. Depending on pharmacies’ implementation stage (exploration, preparation, implementation, and sustainment) the importance of strategies was expected to vary. Strategies such as educational meetings and learning collaboratives can increase perceived appropriateness and boost adoption of MRs which is particularly important for pharmacies in the early exploration stage. Strategies such as receiving support from external implementation advisors as well as recruiting and training internal implementation leaders were deemed particularly important for pharmacies at the preparation stage to strengthen feasibility and fidelity. In later stages (implementation and sustainment) pharmacies were thought to benefit from provision of clinical feedback, obtaining and using patient feedback and re-examining implementation to achieve high fidelity, penetration, and sustainability of MR-provision. Some strategies such as fixed payment and stable delivery contracts were deemed pre-requisites for implementation irrespective of the stage the pharmacy was at.Conclusion The application of the Implementation Research Logic Model illustrated the relations between determinants, strategies, mechanisms, and implementation outcomes. Future research is needed to ascertain that strategies work as planned and achieve the projected implementation outcomes.PCNE abstract number 586Pregnancy prevention while using oral retinoids: a questionnaire survey in DenmarkDana Backran1, Sophia Ahmad1, Johanne Hansen1, Anna Birna Almarsdóttir1, Ramune Jacobsen1 1University of CopenhagenEmail: ramune.jacobsen@sund.ku.dkBackground The use of oral retinoids during pregnancy is associated with teratogenic effects and malformations in newborn babies. The European Medicine Agency (EMA) provided recommendations regarding the restrictive use of oral retinoids during pregnancy in 2003, and updated these recommendations in 2018 by introducing a pregnancy prevention program (PPP).Purpose This study aimed to investigate the awareness of oral retinoid teratogenicity and the adherence to the PPP by physicians, pharmacists and patients in Denmark.Method As part of the EMA initiated multi-country survey, web-based questionnaires were distributed among Danish dermatologists and general practitioners, community pharmacists, and women of childbearing age, who were not pregnant and were using or had used oral retinoids within the past five years. Questionnaires were distributed via respective professional and patient organizations’ social media.Findings Convenient samples of 62 physicians, 96 pharmacists, and 50 oral retinoid using women responded to their questionnaires; 95%, 100%, and 98%, respectively, were aware of the teratogenic risks of oral retinoids. For physicians, the most applied PPP measures were the usage of the patient (44%) and the healthcare professional (19%) guides, while the least applied measure was signing medication risk form (3%). The majority of the physicians discontinued oral retinoids in women who wanted to become pregnant (90%). Performing pregnancy tests and monthly follow-ups with women using oral retinoids were practiced by appr. two thirds of the physicians. Among the pharmacists, the warning sign on the outer medication package was the most used measure (45%), the other measures showed a use of 12.0% or lower; 79% of the pharmacists often or always provided information about the importance of effective contraception when dispensing oral retinoids, and 74% advised women to contact their prescriber if they suspected being pregnant. Among the women, a majority (90%) had read the patient information leaflet included in the medication package and 72% discussed the use of contraception with their healthcare provider, while risk awareness forms and patient cards were seen by only few.Conclusion The study showed that in Denmark physicians, pharmacists and medicine users are aware about the teratogenic effects of oral retinoids. Adherence to pregnancy prevention measures varied considerably for different measures, suggesting a lack of access or unwillingness to use the measures that require patients’ signatures. Feasibility and accessibility of the PPP measures need to be improved to help increase their adherence and improve the safety of oral retinoid prescribing, dispensing, and use.PCNE abstract number 587How medicines are playing out for patients in daily life—a qualitative analysis of drug related problems identified at the pharmacy counterSusanne Kaae1, Ellen van Loon3, Katja Taxis3, Ulla Hedegaard2, Stijn Crutzen3, Ramune Jacobsen1, Armin Andersen1 1Social and Clinical Pharmacy, Department of Pharmacy, University of Copenhagen, Copenhagen, Denmark, 2University of Southern Denmark, 3University of GroningenEmail: armin.andersen@sund.ku.dkBackground Up to 80% of patients with chronic illness experience drug related problems (DRPs), which decreases their quality of life and is costly for society. To tackle DRPs, more insights into what they involve is needed. Besides insights measuring the effects of a controlled pharmacist intervention, or pertaining to poly-pharmacy, insights into how all types of patients experience DRPs in their daily life are also needed.Purpose To holistically investigate the DRPs that patients are experiencing in a daily life context across therapeutic areas and existing DRP categories.Method The data material in this study was part of a larger study evaluating a new education in patient-centered communication offered to pharmacy staff in Denmark. The extracted data consisted of short written descriptions of DRPs detected during counter conversations when dispensing medicines, as recorded by the pharmacy staff. The content of these stories were subjected to an inductive content analysis to understand the problems patients face with their medicines in daily life as they are happening.Findings 297 short descriptions made by 28 pharmacy staff members from 11 different pharmacies were analyzed. Results showed that establishing and maintaining good medication treatment involves considerable efforts from both the patient and the prescriber. Three overall DRP themes were identified. Firstly, problems of actually receiving the medicines were observed. These pertained both to patients not picking up the medicine (for example due to the price or forgetfulness), a missing prescription or lack of prescription renewal, or problems with the medicine distribution system. Secondly, situations with lack of clarity about how to take the medicine were identified. This entailed patients not knowing why to take the medicine, how to administer the medicine or how to coordinate the intake with food/supplementary products. Thirdly, problems with getting satisfactory effects were registered. This included negative experiences with the medicine and concern of future side effect or lack of effect leading to strong worries and undertreatment.Conclusion DRPs are widespread and impact patients’ daily lives practically, emotionally and health-wise. The DRP descriptions in this study clarified fundamental problems with the medicines, which have not been registered using other approaches: Before even considering whether the medicine has the desired effects, it’s necessary to ensure that basic conditions are in place, such as a continued supply of medicine and that the patient knows the treatment plan.PCNE abstract number 588RetinoidRiskAware Study: AWARENESS AND IMPLEMENTATION OF PHARMACOVIGILANCE MEASURES FOR THE SAFE USE OF ORAL RETINOIDS AMONG PATIENTS, PHARMACISTS AND PRESCRIBERS IN SLOVENIA.Nanča Čebron Lipovec1, Mitja Kos1 1University of Ljubljana, Faculty of PharmacyEmail: nanca.cebron.lipovec@ffa.uni-lj.siBackground Retinoids are a class of compounds derived from vitamin A. Oral and topical forms are used to treat numerous dermatologic conditions such as severe acne, eczema, psoriasis, and certain cancers. Due to teratogenicity, the use of oral retinoids is contraindicated during pregnancy. In 2018, the European Medicines Agency introduced a pregnancy prevention programme and revised educational materials to ensure that patients treated with oral retinoids are fully informed about the risks and the need to avoid pregnancy.Purpose To determine patients' and healthcare professionals' awareness of the teratogenic potential of oral retinoids and their adherence to the pregnancy prevention programme in Slovenia.Method This was a mixed-methods study in which both quantitative and qualitative data were collected and analysed. A cross-sectional web-based survey was developed and conducted among physicians, pharmacists, and female patients receiving oral retinoids. The study is part of the international RetinoidRiskAware study, which was conducted in eight European countries. We are presenting the results for Slovenia in relation to the aggregated study results.Findings The study included 30 patients (mean age 27 years), 60 community pharmacists, and 35 physicians prescribing retinoids in Slovenia (mainly dermatologists and general practitioners). Awareness of teratogenic risks was high among patients, pharmacists, and physicians (83%, 100%, and 94%, respectively), both in Slovenia and overall. The materials most frequently used by patients were the information leaflet (60%) and the warning symbol on the packaging (50%), the other measures were less known. Pharmacists found the warning symbol on the packaging (78%) most useful. The other measures were used less frequently. Only 17% of pharmacists used the pharmacist checklist when dispensing medications. Among physicians, the risk acknowledgement form was most used (60%), as was the patient reminder card (37%). Most pharmacists (87%) and physicians (80%) advise on the importance of effective contraception during retinoid treatment. Similar trends in program adherence were also observed in the overall study results. Healthcare professionals in Slovenia reported that the main barrier to adherence to the programme was lack of accessibility to the materials and lack of time for patient counselling.Conclusion The study shows that awareness of the teratogenic risks of retinoids is high among both patients and healthcare professionals in Slovenia. However, risk minimisation measures are not sufficiently implemented in clinical practice.PCNE abstract number 590Interprofessional Education and Collaboration between Pharmacy Technician Students and University College Copenhagen StudentsTina Bolvig1, Jytte Muszynski1, Lise Rølmer Nissen1, Mette Skjøtt1, Bente Annie Sørine Andersen2, Sofie Brøndal Grünfeld3, Mira El-Souri3, Rikke Nørgaard Hansen3, Charlotte Verner Rossing3 1Parmakon, Danish College of Pharmacy Technicians, 2University College Copenhagen, 3Pharmakon, Danish College of Pharmacy PracticeEmail: TB@pharmakon.dkBackground Since 2019, the Danish College of Pharmacy Technicians (CPT) has collaborated with University College Copenhagen (UCC) on a course where the students cooperate interprofessionally. The students from UCC are studying to become nurses, day-care teachers, school and after-school teachers, social workers, psychomotor therapists, or physiotherapists. The UCC students were presented with a challenge concerning a specific patient group at the community pharmacy. To solve the challenge, the UCC students worked in interprofessional groups. The CPT students did not participate in these groups, but they engaged in interprofessional communication in a sparring session, where they gave feedback and discussed the ideas, the different UCC students had developed.Purpose To identify the kind of learning the students from various educations acquire when they engage in an interprofessional course to discuss and solve health care challenges.Method Thirteen students from UCC and 43 students from CPT took part in the course and they were all were invited to answer electronic questionnaires. Five (38%) UCC students and 27 CPT students (63%) answered the questionnaires. The Data from the questionnaires was analysed quantitatively in Excel and qualitatively in NVivo version 13. The results were discussed at a workshop where teachers from the CPT and the UCC shared their reflections about the students’ learning from working with the challenge.Findings CPT students scored 5.4 and the UCC students scored 6.0 on average on a scale from 0 to 10, where 10 is the highest, on the question: “How much did working with the challenge contribute to your learning about interprofessional collaboration?”. The following themes were found from the students’ qualitative answers of the questionnaires and from the workshop with teachers:—CPT and UCC students found it useful to see their role and practice from another perspective—The CPT students’ professional identity was boosted in the process—UCC students acknowledged that they would face medicine-related challenges when working with patients—UCC students' knowledge of the pharmacy technician profession varied—Knowing each other’s strengths and competencies is important—Developing holistic solutions to the presented challenge was complex—A collaboration across sectors can be beneficial for patients in transition between health care sectors.Conclusion CPT students and UCC students learned how important interprofessional collaboration is, and that it is beneficial to meet each other during their educations. They learned about their own competencies and those of other professions and how they can complement each other in patient care.PCNE abstract number 591Challenges in medication safety experienced by employees and managers in Danish municipalities—a qualitative studyRikke Nørgaard Hansen1, Sofie Brøndal Grünfeld1, Bjørn Klinke2, Birthe Søndergaard3, Rikke Lundal Nielsen3, Mette Lisbeth Johansen2, Charlotte Verner Rossing1 1Pharmakon, Danish College of Pharmacy Practice, 2The Danish Association of Pharmaconomists, 3The Association of Danish Pharmacies, 3The Association of Danish PharmaciesEmail: mso@pharmakon.dkBackground 66% of the registered unintentional accidents from 2017 to 2019 in municipal institutions, such as nursing homes, home care and residential facilities, are due to medicine management according to a report from the Danish Patient Safety Authority. Until now no studies have identified how different municipal employees and managers experience medicine-related tasks, and which challenges they face.Purpose The aim of the study was to map challenges with medicine-related tasks in the municipalities identified by municipal managers and further explored by municipal employees. The aim of the study was also to use the results in investigating how pharmacy technicians from community pharmacies (CP) can contribute to strengthen medication safety in the municipalities.Method Semi-structured, in-depth qualitative interviews with two–three municipal managers from ten different municipalities were conducted. Six themes were identified from these interviews, and they were explored by visual storytelling by municipal employees. All interviews were transcribed verbatim before conducting a content analysis using NVivo version 13. The results were presented at a workshop with stakeholders where pharmacy technicians from CP contribution to medication safety in municipalities was discussed.Findings The following themes were identified from interviews with 27 municipal managers and visual storytelling with 17 municipal employees: 1. Challenges in several steps in the medication process. 2. Compliance with existing procedures and instructions related to medication handling is difficul

A “Rich People’s Disease”: Migrant Workers and Structural Disability in China

ABSTRACT Drawing on fieldwork in southwest China, I examine how structural marginalization shapes therapeutic choices and healing experiences of chronic illness. I explore why Chinese rural migrant workers avoid chronic care in biomedicine to grapple with their chronic kidney disease. I show that migrant workers, who live precarious labor lives, experience chronic kidney disease as both a chronic, disabling experience and an acute crisis. I call for broader awareness of structural disability and argue that chronic disease care necessitates not only treating the disease but also the provision of equitable social security.

Patients’ lived experience and reflections on long COVID: an interpretive phenomenological analysis within an integrated adult primary care psychology NHS service

BackgroundLong Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand this illness not only from a professional standpoint but also through the lived experience of patients. Patient reported outcomes through lived experience research is one such angle. To date, no research has explored the overall lived experiences and long COVID illness trajectory perspectives of the patients. This study aimed to gather patient reported outcomes of their long COVID through lived experience research. It recruited adult participants aged 18-years and over who had been referred to a primary care integrated psychology service. The study employed qualitative research using semi-structured interviews and Interpretive Phenomenological Analysis methodology.ResultsA total of eighteen participants completed the study. From their lived experiences, the participants uncovered the varied symptoms of long COVID. They also uncovered their lived progression of living with an unknown chronic illness. Common themes included uncertainty, mental and social impacts, and the processes of self-advocacy, mastering their symptoms, subjective recovery and future coping.ConclusionThis study uncovered the lived experience of long COVID in participants. The results from this study uncovered the lived subjective biopsychosocial experiences of long COVID chronic illness. Traditionally, patients receive care and recommendations from healthcare professionals. However, as long COVID is a new illness, this care model was limited. The participants in the current study described being left with a sense of uncertainty and role confusion. However, participants were able to realize their locus of control over their long COVID illness progression. This illustrates that patients have the resources to uncover the unknowns of this new illness which could inform clinical practice and further research. This suggests that that long COVID needs to be approached from a biopsychosocial perspective which emphasises patient involvement.

OLD CLASS: An Innovative Approach to the Chronic Disease History of Present Illness

Chronic diseases cause 70% of deaths worldwide, including 15 million premature deaths per year. The chronic care model was established to improve chronic disease management; however, it lacks a systematic approach to assist clinicians in fully assessing chronic care needs. OLD CLASS is a method developed by nurse practitioner faculty to guide nurse practitioner students to collect a thorough history, including the lived experience of chronic illness, so they can provide high-quality chronic disease management.

Illness Intrusiveness in Adults with Sickle Cell Disease: The Role of Fatigue.

Chronic illness experiences often interfere with daily functioning (a concept known as illness intrusiveness) and health-related quality of life (HRQoL). However, less is known about the role of specific symptoms in predicting illness intrusiveness in sickle cell disease (SCD). This exploratory study examined associations between common SCD-related symptoms (i.e., pain, fatigue, depression, and anxiety), illness intrusiveness, and HRQoL among adults with SCD (n = 60). Illness intrusiveness significantly correlated with fatigue severity (r = .39, p = .002), depression severity (r = .45, p < .001), anxiety severity (r = .41, p = .001), physical HRQoL (r = -.53, p < .001), and mental HRQoL (r = -.44, p < .001). Multiple regression revealed a significant overall model, (R2 = .28, F(4, 55) = 5.21, p = .001), with fatigue, but not pain, depression, or anxiety, significantly predicting illness intrusiveness (β = .29, p = .036). Results suggest that fatigue may be a primary factor contributing to illness intrusiveness-a determinant of HRQoL-in individuals with SCD. Given the limited sample size, larger confirmatory studies are warranted.

Inhabiting Duration

In examining poetry about chronic illness from the late twentieth and early twenty-first centuries, the article investigates how poets assess and complicate the durations that mark illness. Within the technology-studded healthcare spaces of the 1990s and 2000s, these poems navigate the various scales and technological feats at the forefront of their treatment: the visibility of cancerous cells on an image, the transplantation of an organ, or the amputation of a breast. Although medical technology helps these writers initially traverse the alternative temporalities and scales to which illness draws attention, the poems ultimately move outside of the healthcare realm, instead engaging with environmental spaces. In so doing, these poems come to rely on the expansive timeframes of large-form ecological scale to represent the experience of chronic illness.

A Politics of Suffering: Anarchism and Embodiment in the Life of Voltairine de Cleyre

AbstractAmerican anarchist‐feminist Voltairine de Cleyre created a radical vision of liberation informed by her experiences of chronic illness, depression, poverty and misogyny. This article traces the connections between de Cleyre's embodied experiences and her theorisations of anarchism. Drawing on feminist and disability theories, it argues that de Cleyre's suffering led her to an empathetic vision of anarchism which prioritised freedom from suffering, highlighting the role of embodiment in social movements and political theory. Anarchism provided de Cleyre both a means to understand her own pain as well as its remedy.

Socio-emotional adjustment in children attending family centres: The role of the parent–child relationship

Abstract Family services offer the possibility of producing data sets, capable of primary analyses to measure service efficacy, and secondary analyses to develop nuanced understandings of family needs. In this article, we report secondary analysis of data drawn from 1,151 families elicited upon intake to family centres in Ireland. The aim was to examine correlates of children’s socio-emotional functioning, with focus on the quality of relationships between children and parents. Participating families completed surveys containing socio-demographic questions and standardised instruments tapping into children’s social, emotional and behavioural strengths and difficulties, parents’ mental health, and closeness and conflict in parent–child relationship. Findings indicated that parents’ perceptions of their children’s socio-emotional functioning significantly influenced the quality of the child–parent relationship. Higher levels of conflict were significantly associated with psychological difficulties, whilst greater closeness was significantly related to prosocial behaviours. These relationships held after controlling for a range of child, parent and family socio-demographic variables, such as the child’s experience of chronic illness or stressful life events, both of which independently predicted poorer outcomes. Results are discussed in terms of the dynamic, reciprocal nature of family relationships whereby parent–child conflict and children’s problematic socio-emotional functioning likely influence, and are influenced by, each other.

Living with illness uncertainty: nature cure caregiving in Kerala, South India

First promoted in India as part of M.K. Gandhi’s anti-colonial project, nature cure (prakr̥ ti jīvanaṁ) draws on the metaphor of vitality to frame the body as having a natural wis-dom—a vital force—that works to restore health and balance. In Kerala, South India, patients forge mentorships with nature cure healers to repair their ill bodies, revive the toxic environment, and respond to moral collapse. Based on long-term ethnographic fieldwork, this paper offers a person-centred analysis of one practitioner, Dr Vinod, as he instils trust in two chronically ill patients facing uncertain futures. First, I demonstrate the limits of public categorisations of alter-native medicines in India for representing the multiplicity of healers and their care strategies. Despite nature cure being outwardly centred as a mode of self-healing, Dr Vinod does not engage liberal conceptions of autonomy and independence, nor does he solely critique biomedicine. Rather, Dr Vinod attends to patients’ histories and the specific arrangements of kinship, caste, class, and gender shaping their vulnerabilities, to transform feelings of doubt into those of trust amid illness uncertainty. In this way, alternative healers hold the capacity to reconfigure socially embedded lives. Second, to illuminate how naturopathic care tactics reveal the relational dimen-sions of illness experience, I draw on and expand the work of philosopher Havi Carel. Carel argues that bodily doubt shapes the experience of chronic illness in three ways: loss of faith in one’s body, loss of transparency, and loss of continuity. Engaging with Cheryl Mattingly’s approach to narrative phenomenology, I demonstrate how Dr Vinod moves a step further, asking how articulations of illness and loss are inherently intersubjective. Empathetic to his patients’ social worlds, Dr Vinod gently intervenes in their lives, forging therapeutic ties to support them—all the while outwardly claiming that the locus of healing lies in the self.

Making kinship away from home: chronic disease and the Pakistani diaspora in the US

The article considers several generations of Pakistani immigrants from Karachi to various cities in the United States such as Chicago and New York and explores how chronic diseases are shaped by the reverberations of conflict in kin relations in the US and Pakistan. Instead of examining the experience of chronic illness in isolation, the article considers how webs of evolving relations, tensions, competition, and conflicts among distant and close kin are experienced by the vulnerable and those who try to care for them. These conflicts are shaped by the experience of absence and also in the lives of intimate kin, and often appear in violent form. In navigating these relations, caregivers of those with illnesses develop strategies to maintain communications with wider kinship networks while also shielding the sick from the ramifications of ongoing disputes.

College students and patient work: Health information management by emerging young adults

College students with a life experience of chronic illness and impairments grow into young adulthood as health information monitors as well as communicators with healthcare professionals. This interview study focused on the health information management practices of college and graduate students living with disabilities and chronic illness. SEIPS (Systems Engineering Initiative for Patient Safety), a work system model drawn from human factors engineering, was used as a conceptual framework for qualitative analysis. This revealed the importance of other people, particularly parents, in patients' information worlds. Digital technologies were ubiquitous; analog tools from business cards to binders were also key components of students' information systems. Using the SEIPS structure to interrogate the data allowed an understanding of how health experiences are integrated into everyday life. The findings of this research may provide health information technology designers and information science researchers insight into how to meet the needs of this population.

Integrating Patient-reported Experience (PRE) in a multistage approach to study access to health services for women with chronic illness and migration experience.

Patient-reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access. The MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12)and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettesand policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production. Deploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflectand rectify factors limiting immigrant women's agency and access to quality services. Ultimately, the approach engaged patients as knowledge co-producers for system-level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland. Building on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient-doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice. Women with chronic illness and immigration experience contributed to interview-guideline development, provided PREs in interviews, identified priority areas for health-service changeand actively participated in the development of practice recommendations.