BACKGROUND: Hansen\'s disease, or leprosy, has a long-standing presence in human history, and our study uniquely delves into the experiences of individuals who are among the last survivors of this condition in Greece. During the early 1930s, patients with Hansen\'s disease from Spinalonga, an isolated location in Crete, were moved to a medical facility in Athens. This event represents a significant historical change in the management and treatment of the disease. Following Spinalonga\'s closure, a Sanatorium emerged, evolving into Greece\'s sole Hansen\'s disease center and the present-day refuge for patients, underscoring the enduring stigma and abandonment associated with the disease.
METHODS: Our study, conducted through six interviews with unstructured schedules, provides a unique opportunity for these individuals to share personal insights, offering a profound understanding of their interpretations and experiences.
RESULTS: Through interpretative phenomenological analysis, we unearthed four superordinate themes: the pivotal nature of the diagnosis, the visible impact of the disease on the body, the stigma associated with leprosy and its effects on individuals, and the significance of \'home\' as a place of solace and acceptance.
CONCLUSIONS: These themes collectively depict the deep emotional trauma experienced by the participants, shedding light on the enduring impact of historical stressors, confinement practices, and the challenges of living with a devalued identity, shaping their profound sense of self.

BACKGROUND: The psychology of pain is an important field of study that focuses on understanding the psychological factors associated with pain and developing effective approaches to its management. Pain is a complex sensation that affects a person\'s physical and mental well-being, and psychological factors can have a significant impact on the perception, response and coping with pain. This research study examines the contribution of psychotherapy in managing chronic pain and improving quality of life and treatment adherence.
METHODS: The sample consisted of 87 participants who completed the McGill Pain Assessment Questionnaire, SF-36 Quality of Life questionnaire, and the Morisky Medication Adherence Scale (MMAS-8) questionnaire. Two groups were created: one group received psychotherapy to manage pain and illness, while the other group either did not receive psychotherapy or had no contact with this therapeutic method.
RESULTS: The results showed that patients who received psychotherapy had higher scores in the dimensions of mental health, vitality, general health, physical pain, physical functioning, and social functioning compared to patients who did not receive psychotherapy. Statistical analysis confirmed significant differences between the two groups. Additionally, psychotherapy was associated with higher treatment adherence, as indicated by the mean scores of patients receiving psychotherapy compared to those who did not.
CONCLUSIONS: This suggests that psychotherapy can contribute to increased treatment adherence. The results clearly show that patients who received psychotherapy have significantly higher levels of mental health, vitality, general health and functioning compared to patients who did not receive psychotherapy.

UNASSIGNED: Communal coping is an interpersonal coping strategy defined as the appraisal of a problem as shared and collaboration to manage it. Despite evidence establishing links of communal coping to health, few interventions have involved communal coping. This study seeks to establish proof of concept that an intervention rooted in communal coping theory can impact couple members\' communal coping and intermediary outcomes.
UNASSIGNED: Couples (n = 40) in which one person has type 2 diabetes were randomly assigned to intervention versus control in a parallel randomized trial with 1:1 allocation. The intervention consisted of a single session focused on discussion of shared stressors, communal coping education, and collaborative implementation intentions followed by 7 days of text message reinforcement. Couples were interviewed in-person, received the intervention or active control, and completed 7 daily questionnaires. Communal coping and intermediary outcomes associated with communal coping were assessed daily. Feasibility and acceptability were also assessed.
UNASSIGNED: The intervention increased reports of both patient and partner shared appraisal and collaboration and impacted some intermediary outcomes of communal coping. Compared to control, intervention participants reported greater perceived partner responsiveness, patient support receipt, and partner confidence in patient illness self-efficacy.
UNASSIGNED: This study provides initial proof of concept that an intervention based on communal coping theory can increase couples\' communal coping-both shared appraisal and collaboration. Additionally, the intervention was able to impact some intermediary outcomes that may be linked to downstream health outcomes for both patients and partners.

UNASSIGNED: Polypharmacy occurs frequently among older adults and is associated with an increased risk of falls and medication-related adverse events. In particular, people with a history of migration may receive inappropriate medication due to language barriers or discrimination in healthcare. This study aims to assess the continuities, discontinuities and barriers to drug therapy in older migrants of Turkish descent in Berlin, Germany.
UNASSIGNED: Eleven problem-centered qualitative interviews with chronically ill older persons of Turkish descent and family caregivers were conducted and analyzed qualitatively by means of structuring content analysis.
UNASSIGNED: The chronically ill participants of Turkish descent predominantly take more than 5 types of medication per day and aim to take them regularly. Discontinuities emerge when medication is forgotten or intentionally omitted due to side effects. Frequent changes in medication and physicians\' lack of time are relevant barriers to drug treatment plans. To avoid language barriers and disinterest on the part of professionals, respondents prefer Turkish-speaking physicians.

UNASSIGNED: Adolescents and young adults (AYA) living with chronic medical conditions often struggle to develop medication adherence skills. This pilot trial evaluated the impact of a mobile health coaching intervention, Cell Phone Support (CPS), on medication adherence.
UNASSIGNED: Interventions in this randomized trial were CPS delivered by phone calls (CPS-C), CPS delivered by text messages (CPS-T), or automated text message reminders (ATR). Participants were AYA with different chronic medical conditions (i.e., sickle cell disease, solid organ transplant, type 2 diabetes), aged 15-20 years (N = 34). We examined the feasibility, acceptability, and preliminary efficacy of each intervention.
UNASSIGNED: We examined the feasibility, acceptability, and preliminary efficacy of both CPS interventions. CPS was feasible and acceptable. There was evidence that participants found CPS to be more useful than ATR. In this pilot trial, participants receiving CPS reported relatively stronger increases in adherence, compared to those assigned to ATR. CPS-C slightly outperformed CPS-T.
UNASSIGNED: Providing coaching to AYA struggling with illness self-management via their cell phones may promote their acquisition of medication adherence skills. Although larger studies are needed to confirm the results of this pilot study, phone calls and text messages are both promising modalities for delivering human cell phone support.
UNASSIGNED: This trial was registered prospectively at ClinicalTrials.gov (NCT04241627) on 1/27/2020.

BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.
METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads\' level of hope and the Edmonton Symptom Assessment System was used to measure patients\' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads\' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.
RESULTS: Dyadic scores of hope and patients\' symptom burden were stable over time. The constructs of hope in dyads included \"Living one day at the time,\" \"Having inner force/strength,\" and \"Maintaining good health.\" Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.
CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients\' and informal caregivers\' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

UNASSIGNED: Children\'s Health Ireland (CHI), who govern and operate acute paediatric services for the greater Dublin area, are also the client for the new children\'s hospital project which will be Ireland\'s first fully digital hospital. Design, development and implementation of digital solutions has been prioritised by the National Strategy for Children\'s Nursing to transform and accelerate nurse-led services.
UNASSIGNED: The aim of this phase of a larger study was to explore the perspectives and opinions of key stakeholders on the requirements, benefits, and challenges for a bespoke patient portal, with a specific focus on the ANP-led Neurosurgical Service and children and young people with hydrocephalus.
UNASSIGNED: Interviews and focus groups were held online, and data were recorded and transcribed verbatim. Twenty-three participants across eight sites were interviewed including parents, healthcare professionals, experts and management/administrators. Data were analysed using Braun and Clarke\'s (2006) framework.
UNASSIGNED: Four key findings and considerations were identified in relation to patient portals in general and their interoperability with Electronic Health Records, as well as a bespoke patient portal for children and young people with hydrocephalus.
UNASSIGNED: The availability of a patient portal for children and young people with hydrocephalus would be hugely advantageous to their parents, the ANP led nursing service, and healthcare professionals in both the neurosurgical service at CHI and at regional healthcare organisations as well as for administration, research, and reports. More timely access to health data as well as a consistent log of information and communications between patients and healthcare professionals, would be more efficient and effective than current practices.The augmented ANP-led Neurosurgical Nursing Service at CHI will act as a pilot project from which other nurse-led digital patient services can learn from.
UNASSIGNED: This study was conducted between September 2022 and June 2023. It was registered in Trinity College Dublin, Ireland.
UNASSIGNED: A study exploring requirements, benefits, & challenges for an interoperable patient portal in an ANP led Service for children with hydrocephalus.

BACKGROUND: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective.
OBJECTIVE: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics.
METHODS: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis.
RESULTS: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers\' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability.
CONCLUSIONS: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers\' perspectives on what generates value is essential.

BACKGROUND: Wisdom is an important coping resource for difficult and ambiguous life situations. Wisdom trainings have been developed in clinical and non-clinical settings. What has been missing so far are representative data on wisdom affinity from the general population. These are important regarding needs assessments and identification of risk groups with low wisdom affinity and potential problems in coping with difficult and ambiguous life situations.
METHODS: The study examined a population-representative sample of 2509 persons. Socio-demographic data, presence of chronic and mental illnesses was assessed, and wisdom attitudes by the 12-WD Wisdom Scale. The surveys were carried out by means of interviews and self-report questionnaires at the respondents\' homes, done by an experienced social research company (USUMA GmbH).
RESULTS: Only 6% of the whole sample appeared to be highly wisdom-affirmative (12-WD mean score 10 on scale 0-10), whereas 4% may appear low wisdom-affirm, due to very low agreement (12 WD mean score 0-4). Most of the moderately wisdom-affirm people had a religious denomination (70.9%), whereas only 57-59% of the high or low wisdom-affirm persons reported religious affiliations. Low wisdom-affirm were most often chronically ill (25%), with mental or physical illness in similar frequency, and had significantly more unemployment times than persons with higher wisdom scores. Wisdom affinity was independent from age, gender and age, household situation, and higher school education.
CONCLUSIONS: It must be assumed that people with socio-medical risk factors also have impairments in their wisdom-related problem-solving strategies, and that these can be of interest for transdiagnostic wisdom trainings in prevention or rehabilitation, which has shown positive effects.

OBJECTIVE: COVID-19 is a condition that can lead to other chronic conditions. These conditions are frequently diagnosed in the primary care setting. We used a novel primary care registry to quantify the burden of post-COVID conditions among adult patients with a COVID-19 diagnosis across the United States.
METHODS: We used the American Family Cohort, a national primary care registry, to identify study patients. After propensity score matching, we assessed the prevalence of 17 condition categories individually and cumulatively, comparing patients having COVID-19 in 2020-2021 with (1) historical control patients having influenza-like illness in 2018 and (2) contemporaneous control patients seen for wellness or preventive visits in 2020-2021.
RESULTS: We identified 28,215 patients with a COVID-19 diagnosis and 235,953 historical control patients with influenza-like illness. The COVID-19 group had higher prevalences of breathing difficulties (4.2% vs 1.9%), type 2 diabetes (12.0% vs 10.2%), fatigue (3.9% vs 2.2%), and sleep disturbances (3.5% vs 2.4%). There were no differences, however, in the postdiagnosis monthly trend in cumulative morbidity between the COVID-19 patients (trend = 0.026; 95% CI, 0.025-0.027) and the patients with influenza-like illness (trend = 0.026; 95% CI, 0.023-0.027). Relative to contemporaneous wellness control patients, COVID-19 patients had higher prevalences of breathing difficulties and type 2 diabetes.
CONCLUSIONS: Our findings show a moderate burden of post-COVID conditions in primary care, including breathing difficulties, fatigue, and sleep disturbances. Based on clinical registry data, the prevalence of post-COVID conditions in primary care practices is lower than that reported in subspecialty and hospital settings.