Needs of young adults with type 1 diabetes during life transitions – An Australian-Danish experience

ObjectiveTo explore the similarities and differences in the needs of young adults with T1D during life transitions.MethodsData obtained for this paper was based on three qualitative studies carried out in Denmark and Australia. In total, 33 Individual interviews and two focus groups (n = 46) were conducted. Data was analysed using thematic analysis.ResultsThe most pertinent themes related to the importance of support from peers with diabetes and healthcare professionals to help young adults adjust to independent living. The main difference experienced by Australian and Danish young adults related to the willingness and barriers in clinical attendance during this transitional period.ConclusionsClinical care for young adults with diabetes can be better adapted to support this population as they transition through significant milestones by engagement on the young adults' terms and encouraging young adults to seek out peer support. It is vital that clinical care is tailored to support them in order to ensure the best transition into adulthood with diabetes.Practice implicationsClinicians need to adopt a person-centred approach when engaging with young adults with diabetes. Considerations need to be made around external factors related to life events in young adulthood that may influence diabetes care.     

Life Stress,Depression and Attempted Suicide

Abstract

This paper summarizes a series of controlled studies into the relationship of life events to depression and to suicide attempts. Life events, particularly exit events and events regarded as undesirable, tend to cluster prior to onset of depression. These findings are supported by comparions with general population controls, depressives after recovery, other patient groups, and by studies of relapse. Interactions with predisposing and biological causes are probably of great importance. Suicide attempters are a rather different patient group and they experience a particularly striking accumulation of threatening events. There is a marked peaking of events in the month before the attempt, suggesting a crisis response and the potential relevance of crisis intervention techniques.     

Suicide in recently admitted psychiatric in-patients: A case-control study

BackgroundAround a quarter of in-patient suicides occur within the first week of admission to psychiatric in-patient care. Little is known on the factors associated with suicide during this critical time. We aimed to identify risk factors for suicide among in-patients within the first week of admission.MethodsA national population-based case-control study of 107 current psychiatric in-patients in England who died by suicide within a week of admission, matched on admission date with 107 living controls.ResultsForty-two (40%) suicide cases died within the first 3 day of admission. A fifth of all suicides were on authorised leave at the time of death, but 34% were off the ward without staff agreement compared to only 1% of controls. Independent risk factors for suicide included previous self-harm, recent adverse life events, and a short (<12 months) duration of illness.LimitationsThis is a retrospective study, using clinical data mainly collected from case records. Clinicians were not blind to case/control status.ConclusionsThe first few days of admission should be recognised as the period of highest risk. Careful risk evaluation is needed at this time, particularly in those with recent illness onset or previous suicide attempts. Knowledge of life events experienced before admission should be incorporated into risk assessments. Improvements to the ward environment to lessen the distress of an admission may be an important preventative measure. Protocols may require adapting to improve the safety of those on agreed leave, and prevent absconding through increased vigilance and closer observation of ward exits.     

Assessment of the relationship between life events with psychosocial competence of students in selected secondary schools in Northern and Central Uganda

IntroductionAs they grow, young people transit through adolescence; a particularly challenging phase. Many go through without difficulties but some experience maladaptive responses in form of conduct and adjustment problems, pubertal challenges and life stress. Published research from the developed societies demonstrates consistent associations between young people''s exposure to life events, psychosocial competence (PSC) and mental health problems. However, comparable research from income-constrained societies remains scarce. The purpose of this study was to determine the prevalence of life events in secondary school students and describe the relationship between life events and PSC in the same population.MethodsThis was a cross-sectional study. Participants were 2,902 randomly selected in Central and Northern Uganda. They responded to self-administered questionnaires on socio-demographics, life events and PSC.ResultsNorthern Ugandan students were more likely to be susceptible to stress-related illness associated with major life events (p = < 0.01). Among students with a high susceptibility to stress related illness, those with low scores on self-efficacy (p = < 0.001), accurate self-assessment (p = < 0.001) and self-confidence (p = < 0.001) were mostly from the North. Students from Northern Uganda had experienced more negative events. Students with higher scores on empathy, emotional awareness, accurate self- assessment and self-confidence tended to have low distress. Students that had a low susceptibility to stress related illness (AOR = 1.97; 95% CI: 1.57 – 2.48); high scores on self-efficacy (AOR 1.37; 95% CI: 1.09 – 1.74), self-confidence (AOR 1.32; 95% CI: 1.02 – 1.72), and accurate self-assessment (AOR 2.19; 95% CI: 1.70 – 2.80) were mostly from northern Uganda.ConclusionIt is important to help students to cope with negative life events since an association exists between negative life events and PSC domains. PSC domains of empathy, emotional awareness, accurate self-assessment and self-confidence seem to be associated with lower distress levels, implying that these should be reinforced.     

A Comparison of Life Events Scoring Methods as Predictors of Psychological Symptomatology

Abstract

Seven scoring methods for the Life Events Survey (LES)¹ were compared to determine which, if any, is superior for prediction of psychological symptomatology as measured by the Brief Symptom Inventory (BSI).² Every scoring method tested, except one utilizing an individual's positive ratings of events, was significantly correlated with symptomatology. The method using an individual's negative ratings of events was a significantly better predictor than any other. These findings suggest several conclusions. First, nomothetic methods for weighting life events do not increase a scale's predictive ability beyond that achieved by a frequency count of events. Second, frequency of life events predicts psychological symptomatology only insofar as life events are perceived as negative. That is, positively perceived events do not predict symptomatology. Finally, a life events scale's predictive ability is increased by utilizing the individual's negative perceptions of events.     

Simplified Scaling for Life Change Events

Abstract

A relatively simple interval scaling method for adjustment to life change events was compared to the original, more difficult, proportionate scaling method. Ranking of life events by both methods was extremely similar. Evidence also was found that today Americans scale several minor life change events as requiring greater adjustment than that estimated for these events a decade earlier.     

Fall-off in Reporting Life Events: Effects of Life Change,Desirability, and Anticipation

Abstract

The influence of event characteristics on recall was examined by directly comparing fall-off in reporting life events as a function of life change, desirability, and anticipation. We collected information from a sample of 1,669 blue-collar workers on stressful life events that occurred in a 1-year interval before the questionnaire was administered. The results indicated no fall-off in reporting events associated with marked life changes (ie, salient events). In contrast, significant fall-off was observed for events characterized by varying degrees of desirability and anticipation. Although ratings of desirability and saliency were not independent, saliency of life events emerged as the dimension most closely associated with accuracy of event reporting. Research on the reliability of measures of life events and the association between event characteristics and illness should consider the kinds of systematic reporting differences observed here.     

A formal risk-benefit framework for genomic tests: Facilitating the appropriate translation of genomics into clinical practice

PurposeEvaluation of genomic tests is often challenging because of the lack of direct evidence of clinical benefit compared with usual care and unclear evidence requirements. To address these issues, this study presents a risk-benefit framework for assessing the health-related utility of genomic tests.MethodsWe incorporated approaches from a variety of established fields including decision science, outcomes research, and health technology assessment to develop the framework. Additionally, we considered genomic test stakeholder perspectives and case studies.ResultsWe developed a three-tiered framework: first, we use decision-analytic modeling techniques to synthesize data, project incidence of clinical events, and assess uncertainty. Second, we defined the health-related utility of genomic tests as improvement in health outcomes as measured by clinical event rates, life expectancy, and quality-adjusted life-years. Finally, we displayed results using a risk-benefit policy matrix to facilitate the interpretation and implementation of findings from these analyses.Conclusion: A formal risk-benefit framework may accelerate the utilization and practice-based evidence development of genomic tests that pose low risk and offer plausible clinical benefit, while discouraging premature use of tests that provide little benefit or pose significant health risks compared with usual care.     

The use of fault reporting of medical equipment to identify latent design flaws

Background and purposePoor device design that fails to adequately account for user needs, cognition, and behavior is often responsible for use errors resulting in adverse events. This poor device design is also often latent, and could be responsible for “No Fault Found” (NFF) reporting, in which medical devices sent for repair by clinical users are found to be operating as intended. Unresolved NFF reports may contribute to incident under reporting, clinical user frustration, and biomedical engineering technologist inefficacy. This study uses human factors engineering methods to investigate the relationship between NFF reporting frequency and device usability.Material and methodsAn analysis of medical equipment maintenance data was conducted to identify devices with a high NFF reporting frequency. Subsequently, semi-structured interviews and heuristic evaluations were performed in order to identify potential usability issues. Finally, usability testing was conducted in order to validate that latent usability related design faults result in a higher frequency of NFF reporting.ResultsThe analysis of medical equipment maintenance data identified six devices with a high NFF reporting frequency. Semi-structured interviews, heuristic evaluations and usability testing revealed that usability issues caused a significant portion of the NFF reports. Other factors suspected to contribute to increased NFF reporting include accessory issues, intermittent faults and environmental issues. Usability testing conducted on three of the devices revealed 23 latent usability related design faults.ConclusionsThese findings demonstrate that latent usability related design faults manifest themselves as an increase in NFF reporting and that devices containing usability related design faults can be identified through an analysis of medical equipment maintenance data.     

A qualitative participatory study to identify experiences of coronary heart disease patients to support the development of online self-management services

ObjectiveWeb-based self-management services remain underutilized in current practice. Our aim was to gain insight into disease and self-management experiences of patients in early and progressive stages of coronary heart disease (CHD), to understand moderating effects of daily life experiences on the utilization of web-based self-management services and preconditions for use.MethodsWe applied generative research techniques, which stem from the field of product design and are characterized by the use of creative processes. Three groups of patients with CHD received a sensitizing package to document and reflect on their health, and were subsequently either interviewed or participated in a focus group session.ResultsIn total, 23 patients participated in this study. Emerging themes were (1) fear for recurrent events, (2) experiences with professional care, (3) the perceived inability to prevent disease progression, (4) the desire to go on living without thinking about the disease every day, (5) the social environment as a barrier to or facilitator for self-management, and (6) the need for information tailored to personal preferences.ConclusionHow patients experience their disease varies between stable and post-acute stages, as well as between early and progressive stages of CHD. Patients in post-acute stages of the disease seem to be most amenable to support, while patients in stable stages want to live their life without being reminded of their disease. In the context of self-management, web-based services should be adapted to the variation in needs that occur in the different stages of CHD and new strategies to fit such services to these needs should be developed. Furthermore, they should be tailored to patients’ individual health situation and preferences, support patient empowerment, and manage expectations regarding the progression of their disease.     

Using hypnoanalysis and guided imagery to identify and manage emotional aspects of multiple sclerosis

BackgroundTo date, no studies have used hypnosis to examine and manage the potential emotional causes of multiple sclerosis (MS) in the scientific field; therefore, we decided to compare the effectiveness of hypnoanalysis and guided imagery for determining and manage these emotional causes.MethodsFifteen participants with severe MS were included and assigned into 2 groups: hypnoanalysis and guided imagery. In the hypnoanalysis group, the participants underwent 10 hypnotic sessions to understand events related to the cause of the disease, which were restructured (the events were modified by adding the psychological resources that each involved person needed); in addition, other techniques were used to investigate the causes and solutions according to the participants’ unconscious. The guided imagery group received 10 group sessions of body relaxation and guided imagery, which were recorded for practice at home. Outcome measures, namely, disability (the Expanded Disability Status Scale, EDSS), quality of life (QoL, measured with the SF-36) and number of relapses, were evaluated 4 months previous the intervention, at baseline, post-intervention, and 3 months later.ResultsHypnoanalysis revealed that stressful events and psychoemotional maladaptive patterns acted as causal, detonating, or aggravating factors of disease, and psychoemotional changes were the most frequent and varied solutions. No changes were observed in disability between the two groups. The guided imagery group showed an improvement in 2 subscales of QoL when compared with the hypnoanalysis group (which disappeared at the follow-up); this difference is probably due to the increased number of sessions and probably due to psychoemotional maladaptive patterns being more frequently mentioned than difficult circumstances in life and/or unsolved past events. However, the techniques used in hypnoanalysis were effective in understanding the potential emotional causes of MS, which showed high intra- and inter-participant consistency.ConclusionsThe daily use of guided imagery overcame the restructuring of negative past events to improve QoL in patients with MS.Trial registrationACTRN12618002024224 (retrospectively registered)     

Health status and its socio-economic covariates in the older population in Poland – the assumptions and methods of the nationwide,cross-sectional PolSenior2 survey

IntroductionPopulation ageing constitutes an increasing medical, social, and economic burden worldwide. Optimal senior policy should be based on well-assessed knowledge on the prevalence and control of age-related diseases, multimorbidity, disabilities, and their social determinants. The objective of this paper is to describe the assumptions, methods, and sampling procedures of the PolSenior2 survey, which was aimed at characterising the health status of old and very-old adults in Poland.Material and methodsThe project was conducted in the period 2018–2019 as a cross-sectional survey of a representative sample of people aged 60 years and over. Subjects were selected using three-stage stratified and proportional random sampling in seven equally sized (n = 850) age groups. The study protocol consisted of face-to-face interviews, specific geriatric scales and tests, and anthropometric and blood pressure measurements performed by well-trained nurses at participants homes as well as blood and urine sample laboratory tests.ResultsIn the Polsenior2 study a group of 5987 subjects underwent the questionnaire parts of the survey, and almost all (n = 5823) agreed to blood or urine sample collection.ConclusionsIn recent decades several studies focused on various aspects of elderly health and life conditions had been carried out in Poland and Central and Eastern Europe. However, none of them is so complex and has covered so many issues as PolSenior2, which is the largest study devoted to the health status of older persons in Poland and one of the largest and the most comprehensive in Europe. The results of the study will help to improve health policy targeted at the elderly population in Poland.     

A qualitative analysis of educational,professional and socio-cultural issues affecting interprofessional collaboration in oncology palliative care

ObjectivesOncology palliative care (PC) services seek to improve quality of life in patients with cancer. PC providers face significant systemic obstacles, stemming from insufficient collaboration between healthcare providers. This study explores these obstacles and strategies to help facilitate successful collaboration amongst healthcare providers at a systemic level.MethodsA multicenter qualitative study was conducted via interviews and focus groups. Fifty employees in Italian-speaking Switzerland were interviewed, along with ten relatives of oncology patients. Framework analysis was used to identify and categorize the most prominent themes.ResultsThree main themes were identified: knowledge of and connection to other healthcare approaches; beliefs, attitudes and behavior regarding collaboration; and values, attitudes and beliefs towards life, end-of-life and optimal care approaches for oncology patients.ConclusionsStrategies that promote interprofessional collaboration and oncology PC services should foster a cultural shift towards perceiving these services as a medical specialty, thereby contributing to quality patient care.ImplicationsAn overview of potential limitations is provided, in addition to a timeline of interprofessional collaboration which would help to optimize oncology PC services.     

Accurate detection of clinically relevant uniparental disomy from exome sequencing data

PurposeUniparental disomy (UPD) is the rare occurrence of two homologous chromosomes originating from the same parent and is typically identified by marker analysis or single-nucleotide polymorphism (SNP)-based microarrays. UPDs may lead to disease due to imprinting effects, underlying homozygous pathogenic variants, or low-level mosaic aneuploidies. In this study we detected clinically relevant UPD events in both trio and single exome sequencing (ES) data.MethodsUPD was detected by applying a method based on Mendelian inheritance errors to a cohort of 4912 ES trios (all UPD types) and by using median absolute deviation–scaled regions of homozygosity to a cohort of 29,723 single ES samples (isodisomy only).ResultsAs positive controls, we accurately identified three mixed UPD, three isodisomy, as well as two segmental UPD events that were all previously reported by SNP-based microarrays. In addition, we identified three segmental UPD and 11 isodisomy events. This resulted in a novel diagnosis based on imprinting for one patient, and adjusted genetic counseling for another patient.ConclusionUPD can easily be identified using both single and trio ES and may be clinically relevant to patients. UPD analysis should become routine in clinical ES, because it increases the diagnostic yield and could affect genetic counseling.     

Spanish Medical Interpreters’ Management of Challenges in End of Life Discussions

ObjectiveProfessional medical interpreters facilitate patient understanding of illness, prognosis, and treatment options. Facilitating end of life discussions can be challenging. Our objective was to better understand the challenges professional medical interpreters face and how they affect the accuracy of provider-patient communication during discussions of end of life.MethodsWe conducted semi-structured interviews with professional Spanish medical interpreters. We asked about their experiences interpreting end of life discussions, including questions about values, professional and emotional challenges interpreting these conversations, and how those challenges might impact accuracy. We used a grounded theory, constant comparative method to analyze the data. Participants completed a short demographic questionnaire.ResultsSeventeen Spanish language interpreters participated. Participants described intensive attention to communication accuracy during end of life discussions, even when discussions caused emotional or professional distress. Professional strains such as rapid discussion tempo contributed to unintentional alterations in discussion content. Perceived non-empathic behaviors of providers contributed to rare, intentional alterations in discussion flow and content.ConclusionWe found that despite challenges, Spanish language interpreters focus intensively on accurate interpretation in discussions of end of life.Practice ImplicationsProvider training on how to best work with interpreters in these important conversations could support accurate and empathetic interpretation.     

Using ePROMs for follow-up after palliative radiotherapy: An exploratory study with patients and health care providers

ObjectivesPatients treated with palliative radiotherapy may experience symptoms decreasing their quality of life. Electronic patient-reported outcome measures (ePROMs) could provide an opportunity to follow-up patients after treatment.MethodsA mixed-method study was performed using self-constructed questionnaires, focus groups and interviews with patients and health care professionals (HCP). A qualitative approach was used to code the data.ResultsForty-two patients, 21 radiation-oncologists, 15 general practitioners (GPs) and 24 home-care nurses completed a questionnaire. Ten patients, 6 radiation-oncologists, 14 GPs and 5 nurses were interviewed or participated in a focus group. Although patients and HCP are satisfied with current care, they believe ePROMs could improve follow-up, communication, continuity of care and self-management of symptoms. An easy to use, versatile ePROM platform seems to be important for successful implementation. Self-care tips and contact information should be added to relevant ePROM-questions, on both physical and psychological symptoms.ConclusionPatients and HCP agree that ePROMs could improve systematical clinical follow-up after palliative radiotherapy, with self-management support being the primary objective of such a system. Practice implications ePROMs after palliative radiotherapy seem feasible, the exact patient population that could benefit the most will need to be explored further; as the palliative population is very diverse.     

Infrastructures in healthcare: The interplay between generativity and standardization

ObjectiveTo investigate how the design, development and implementation process of a new patient-centered portal unfolds by focusing on its evolutionary infrastructural development.DesignWe conducted a case study on a patient-centred portal in Norway. We used qualitative data collection techniques including observations, interviews and attendance of design workshops with users. We performed an interpretive analysis of the data through the lens of technology enactment.ResultsThe case analysis reveals that the patient-centred portal has a strong generative character. However, for the enactment of the technology continuous sociotechnical negotiations take place. Grounded in the empirical data and their analysis we complement and expand the existing understanding of generativity.DiscussionWe characterize generativity as sociotechnical and resulting from negotiations for technology enactment. We discuss in detail such negotiations and show how they shape the evolution of infrastructures that are generative while standardized.