A framework for involving coproduction partners in research about young people with type 1 diabetes.

BACKGROUND: Involvement of end-users in research can enhance its quality, relevance, credibility and legitimacy; however, the processes through which these changes occur are unclear. Our aim was to explore a coproduction research team's experiences of their involvement in research about young people with type 1 diabetes mellitus (T1DM). METHODS: Semi-structured interviews conducted with two young people with T1DM, two parents, one diabetes educator, one endocrinologist-scientist and one research-engineer explored experiences of coproduction research and its impact on both the research and the participants. Drawing on grounded theory, we undertook inductive analysis and storyline mapping to develop a theorized framework of mechanisms supporting the process of coproduction in T1DM research with young people. FINDINGS: The framework involving coproduction partners in research about young people with type 1 diabetes centres on the unique expertize that different team members bring to the research and describes conditions that enable expert contributions through the enactment of a variety of expert roles. The framework also describes outcomes-the impact of the expert contributions on both the research and the team members involved. CONCLUSION: The findings of this small exploratory study provide a sound foundation to develop further understanding about structures and processes that are integral for the success of coproduction research teams. The framework may provide a guide for researchers planning to incorporate coproduction, on elements that are important for this model of research to succeed. It may also inform coproduction impact assessment research and be used for hypothesis testing and expansion in future studies.

Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. METHODS: Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. RESULTS: Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. CONCLUSION: People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. PATIENT AND PUBLIC INVOLVEMENT: Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.

The Potential of Current Noninvasive Wearable Technology for the Monitoring of Physiological Signals in the Management of Type 1 Diabetes: Literature Survey.

BACKGROUND: Monitoring glucose and other parameters in persons with type 1 diabetes (T1D) can enhance acute glycemic management and the diagnosis of long-term complications of the disease. For most persons living with T1D, the determination of insulin delivery is based on a single measured parameter-glucose. To date, wearable sensors exist that enable the seamless, noninvasive, and low-cost monitoring of multiple physiological parameters. OBJECTIVE: The objective of this literature survey is to explore whether some of the physiological parameters that can be monitored with noninvasive, wearable sensors may be used to enhance T1D management. METHODS: A list of physiological parameters, which can be monitored by using wearable sensors available in 2020, was compiled by a thorough review of the devices available in the market. A literature survey was performed using search terms related to T1D combined with the identified physiological parameters. The selected publications were restricted to human studies, which had at least their abstracts available. The PubMed and Scopus databases were interrogated. In total, 77 articles were retained and analyzed based on the following two axes: the reported relations between these parameters and T1D, which were found by comparing persons with T1D and healthy control participants, and the potential areas for T1D enhancement via the further analysis of the found relationships in studies working within T1D cohorts. RESULTS: On the basis of our search methodology, 626 articles were returned, and after applying our exclusion criteria, 77 (12.3%) articles were retained. Physiological parameters with potential for monitoring by using noninvasive wearable devices in persons with T1D included those related to cardiac autonomic function, cardiorespiratory control balance and fitness, sudomotor function, and skin temperature. Cardiac autonomic function measures, particularly the indices of heart rate and heart rate variability, have been shown to be valuable in diagnosing and monitoring cardiac autonomic neuropathy and, potentially, predicting and detecting hypoglycemia. All identified physiological parameters were shown to be associated with some aspects of diabetes complications, such as retinopathy, neuropathy, and nephropathy, as well as macrovascular disease, with capacity for early risk prediction. However, although they can be monitored by available wearable sensors, most studies have yet to adopt them, as opposed to using more conventional devices. CONCLUSIONS: Wearable sensors have the potential to augment T1D sensing with additional, informative biomarkers, which can be monitored noninvasively, seamlessly, and continuously. However, significant challenges associated with measurement accuracy, removal of noise and motion artifacts, and smart decision-making exist. Consequently, research should focus on harvesting the information hidden in the complex data generated by wearable sensors and on developing models and smart decision strategies to optimize the incorporation of these novel inputs into T1D interventions.

'They're getting a taste of our world': A qualitative study of people with multiple sclerosis' experiences of accessing health care during the COVID-19 pandemic in the Australian Capital Territory.

BACKGROUND: People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health-care providers to manage their health. OBJECTIVE: To elucidate people with MS' experiences of accessing health care during the COVID-19 pandemic in Australia. DESIGN: A qualitative study involving semi-structured interviews and thematic analysis. SETTINGS AND PARTICIPANTS: Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020. RESULTS: Participants were aware that having MS made them more vulnerable to contracting COVID-19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face-to-face consultation. Benefits of telehealth consultations included improved access, convenience and being contact-free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health-care routines. DISCUSSION AND CONCLUSION: Personal risk assessment and trust in health-care professionals are determinants of the mode through which people with MS accessed health care during the COVID-19 pandemic. Telehealth has been a valuable tool to mitigate COVID-19 transmission through enabling contact-free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers.

'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis.

BACKGROUND: People with multiple sclerosis (MS) have varied experiences and approaches to self-management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research. METHODS: A meta-synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge-users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease. RESULTS: Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health-care sector; and work, social and family life). CONCLUSION: The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

GP awareness, practice, knowledge and confidence: evaluation of the first nation-wide dementia-focused continuing medical education program in Australia.

BACKGROUND: Dementia is under-diagnosed in primary care. Timely diagnosis and care management improve outcomes for patients and caregivers. This research evaluated the effectiveness of a nationwide Continuing Medical Education (CME) program to enhance dementia-related awareness, practice, knowledge and confidence of general practitioners (GPs) in Australia. METHODS: Data were collected from self-report surveys by GPs who participated in an accredited CME program face-to-face or online; program evaluations from GPs; and process evaluations from workshop facilitators. CME participants completed surveys at one or more time-points (pre-, post-program, six to 9 months follow-up) between 2015 and 2017. Paired samples t-test was used to determine difference in mean outcome scores (self-reported change in awareness, knowledge, confidence, practice) between time-points. Multivariable regression analyses were used to investigate associations between respondent characteristics and key variables. Qualitative feedback was analysed thematically. RESULTS: Of 1352 GPs who completed a survey at one or more time-points (pre: 1303; post: 1017; follow-up: 138), mean scores increased between pre-CME and post-program for awareness (Mpost-pre = 0.9, p <  0.0005), practice-related items (Mpost-pre = 1.3, p <  0.0005), knowledge (Mpost-pre = 2.2, p <  0.0005), confidence (Mpost-pre = 2.1, p <  0.0005). Significant increases were seen in all four outcomes for GPs who completed these surveys at both pre- and follow-up time-points. Male participants and those who had practised for five or more years showed greater change in knowledge and confidence. Age, years in practice, and education delivery method significantly predicted post-program knowledge and confidence. Most respondents who completed additional program evaluations (> 90%) rated the training as relevant to their practice. These participants, and facilitators who completed process evaluations, suggested adding more content addressing patient capacity and legal issues, locality-specific specialist and support services, case studies and videos to illustrate concepts. CONCLUSIONS: The sustainability of change in key elements relating to health professionals' dementia awareness, knowledge and confidence indicated that dementia CME programs may contribute to improving capacity to provide timely dementia diagnosis and management in general practice. Low follow-up response rates warrant cautious interpretation of results. Dementia CME should be adopted in other contexts and updated as more research becomes available.

Experiencing integration: a qualitative pilot study of consumer and provider experiences of integrated primary health care in Australia.

BACKGROUND: The terms integration and integrated care describe the complex, patient-centred strategies to improve coordination of healthcare services. Frameworks exist to conceptualise these terms, but these have been developed from a professional viewpoint. The objective of this study was to explore consumers' and providers' concepts, expectations and experience of integrated care. A key focus was whether frameworks developed from a professional perspective are effective models to explore people's experiences. METHODS: A qualitative pilot study was undertaken at one Australian multidisciplinary primary health care centre. Semi-structured interviews were conducted with consumers (N = 19) and staff (N = 10). Data were analysed using a framework analysis approach. RESULTS: Consumers' experience of integrated care tended to be implicit in their descriptions of primary healthcare experiences more broadly. Experiences related to the typologies involved clinical and functional integration, such as continuity of providers and the usefulness of shared information. Staff focused on clinical level integration, but also talked about a cultural shift that demonstrated normative, professional and functional integration. CONCLUSIONS: Existing frameworks for integration have been heavily influenced by the provider and organisational perspectives. They are useful for conceptualising integration from a professional perspective, but are less relevant for consumers' experiences. Consumers of integrated primary health care may be more focussed on relational aspects of care and outcomes of care.

Time to manage: patient strategies for coping with an absence of care coordination and continuity.

This paper examines how people with chronic illnesses respond to absences of continuity and coordination of care. Little work has been done on how the ill person might mitigate flaws in a less than optimal system. Our qualitative research, carried out among 91 participants in Australia, reveals that people with chronic illnesses create strategies to facilitate the management of their care. These strategies included efforts to improve communication between themselves and their health care practitioners; keeping personal up-to-date medication lists; and generating their own specific management plans. While we do not submit that it is patients' responsibility to attend to gaps in the health system, our data suggests that chronically ill people can, in and through such strategies, exert a measure of agency over their own care; making it effectively more continuous and coordinated. Participants crafted strategies according to the particular social and bodily rhythms that their ongoing illnesses had lent to their lives. Our analysis advances the view that the ill body itself is capable of enfolding the health system into the rhythms of illness - rather than the ill body always fitting into the overarching structural tempo. This entails an agent-centric view of time in illness experience. A Virtual Abstract of this paper can be found at: https://youtu.be/UwbxlEJOTx8.

Can we measure integration of healthcare from administrative and clinical records?

BACKGROUND: A major component of integrated care is shared information. Computer-based clinical and administrative systems, particularly in multidisciplinary environments, provide an opportunity to directly measure the degree of integration. OBJECTIVE: The objective of this article is to explore the viability of automated measurement of integration within a multidisciplinary healthcare centre. METHODS: With the assistance of practice staff, researchers explored the structure and content of selected patient records in two practices to understand the viability of automated measurement. RESULTS: Extracted patient records can be used to understand integration to the degree that communication is recorded, but at significant expense to the practices and researchers. Automated systems are practical to the degree that clinicians complete all relevant identifying fields. DISCUSSION: Computerised clinical systems provide opportunities for exploring integration of care if they include a range of care providers and all relevant fields are always completed. The latter condition will always be difficult to achieve.

Usability of patient experience surveys in Australian primary health care: a scoping review.

Monitoring patient experience is essential for stimulating innovation in health care and improving quality and accountability. Internationally, standardised approaches are used to collect patient experience information, but in Australian primary health care (PHC), little is known about which patient experience surveys are used and which aspects of experience they measure. This prevents routine inclusion of patient experience data in quality improvement or system performance measurement. A scoping review was undertaken to identify relevant surveys. Data on survey availability, psychometric properties, target population, method and frequency of administration were extracted. Survey items were mapped against six dimensions of patient experience described internationally. Ninety-five surveys were identified; 34 were developed for use in Australia. Surveys vary in content, size, aspects of experience measured and methods of administration. The quality of data collected and the extent to which it is used in quality improvement is unclear. Collection of patient experience data in Australian PHC is not well developed or standardised and there are few publicly available instruments. There is a need to clearly identify the purposes for which data are to be used and to develop an integrated approach that articulates these collections with other quality and performance data. Some options are discussed.

Recruiting general practitioners for surveys: reflections on the difficulties and some lessons learned.

Surveys of GPs are essential to facilitate future planning and delivery of health services. However, recruitment of GPs into research has been disappointing with response rates declining over recent years. This study identified factors that facilitated or hampered GP recruitment in a recent survey of Australian GPs where a range of strategies were used to improve recruitment following poor initial responses. GP response rates for different stages of the survey were examined and compared with reasons GPs and leaders of university research networks cited for non-participation. Poor initial response rates were improved by including a questionnaire in the mail-out, changing the mail-out source from an unknown research team to locally known network leaders, approaching a group of GPs known to have research and training interests, and offering financial compensation. Response rates increased from below 1% for the first wave to 14.5% in the final wave. Using a known and trusted network of professionals to endorse the survey combined with an explicit compensation payment significantly enhanced GP response rates. To obtain response rates for surveys of GPs that are high enough to sustain external validity requires an approach that persuades GPs and their gatekeepers that it is worth their time to participate.

Diagnostic delay of sarcoidosis: an integrated systematic review.

BACKGROUND: Sarcoidosis is a chronic inflammatory granulomatous disease of unknown cause. Delays in diagnosis can result in disease progression and poorer outcomes for patients. Our aim was to review the current literature to determine the overall diagnostic delay of sarcoidosis, factors associated with diagnostic delay, and the experiences of people with sarcoidosis of diagnostic delay. METHODS: Three databases (PubMed/Medline, Scopus, and ProQuest) and grey literature sources were searched. Random effects inverse variance meta-analysis was used to pool mean diagnostic delay in all types of sarcoidosis subgroup analysis. Diagnostic delay was defined as the time from reported onset of symptoms to diagnosis of sarcoidosis. RESULTS: We identified 374 titles, of which 29 studies were included in the review, with an overall sample of 1531 (694 females, 837 males). The overall mean diagnostic delay in all types of sarcoidosis was 7.93 months (95% CI 1.21 to 14.64 months). Meta-aggregation of factors related to diagnostic delay in the included studies identified three categories: (1) the complex and rare features of sarcoidosis, (2) healthcare factors and (3) patient-centred factors. Meta-aggregation of outcomes reported in case studies revealed that the three most frequent outcomes associated with diagnostic delay were: (1) incorrect diagnosis, (2) incorrect treatment and (3) development of complications/disease progression. There was no significant difference in diagnostic delay between countries with gatekeeper health systems (where consumers are referred from a primary care clinician to specialist care) and countries with non-gatekeeper systems. No qualitative studies examining people's experiences of diagnostic delay were identified. CONCLUSION: The mean diagnostic delay for sarcoidosis is almost 8 months, which has objective consequences for patient management. On the other hand, there is a paucity of evidence about the experience of diagnostic delay in sarcoidosis and factors related to this. Gaining an understanding of people's experiences while seeking a diagnosis of sarcoidosis is vital to gain insight into factors that may contribute to delays, and subsequently inform strategies, tools and training activities aimed at increasing clinician and public awareness about this rare condition. TRIAL REGISTRATION: PROSPERO Registration number: CRD42022307236.

Time to diagnosis for a rare disease: managing medical uncertainty. A qualitative study.

BACKGROUND: People with a rare disease commonly experience long delays from the onset of symptoms to diagnosis. Rare diseases are challenging to diagnose because they are clinically heterogeneous, and many present with non-specific symptoms common to many diseases. We aimed to explore the experiences of people with myositis, primary immunodeficiency (PID), and sarcoidosis from symptom onset to diagnosis to identify factors that might impact receipt of a timely diagnosis. METHODS: This was a qualitative study using semi-structured interviews. Our approach was informed by Interpretive Phenomenological Analysis (IPA). We applied the lens of uncertainty management theory to tease out how patients experience, assess, manage and cope with puzzling and complex health-related issues while seeking a diagnosis in the cases of rare diseases. RESULTS: We conducted interviews with 26 people with a rare disease. Ten participants had been diagnosed with a form of myositis, 8 with a primary immunodeficiency, and 8 with sarcoidosis. Time to diagnosis ranged from 6 months to 12 years (myositis), immediate to over 20 years (PID), and 6 months to 15 years (sarcoidosis). We identified four themes that described the experiences of participants with a rare disease as they sought a diagnosis for their condition: (1) normalising and/or misattributing symptoms; (2) particularising by clinicians; (3) asserting patients' self-knowledge; and (4) working together through the diagnosable moment. CONCLUSIONS: Managing medical uncertainty in the time before diagnosis of a rare disease can be complicated by patients discounting their own symptoms and/or clinicians discounting the scale and impact of those symptoms. Persistence on the part of both clinician and patient is necessary to reach a diagnosis of a rare disease. Strategies such as recognising pattern failure and accommodating self-labelling are key to diagnosis.

Addressing chronic and complex conditions: what evidence is there regarding the role primary healthcare nurses can play?

Primary healthcare services in Australia need to respond to the needs of an ageing population and the rising prevalence of chronic and complex conditions in that population. This paper reports on the results of a comprehensive Australian and international literature review on nurse-led and nurse-involved primary healthcare interventions with a particular focus on those serving people with chronic and complex conditions and hard to reach populations. The key question this review addresses is: what role can nurses play in primary healthcare to manage people with chronic and complex conditions? International evidence demonstrates that nurses working in primary care provide effective care, have high patient satisfaction and patients are more likely to comply with nurse instructions than general practitioner instructions. Nurses can provide care equivalent to doctors within their scope of practice but have longer consultations. Lifestyle interventions provided by nurses have been shown to be effective for cardiac care, diabetes care, smoking cessation and obesity. The nursing workforce can provide appropriate, cost-effective and high-quality primary healthcare within their scope of practice.

Exploring the barriers and enablers of diabetes care in a remote Australian context: A qualitative study.

OBJECTIVE: This qualitative study explored the current barriers and enablers of diabetes care in the Indian Ocean Territories (IOT). METHODS: A constructivist grounded theory approach that incorporated semi-structured telephone interviews was employed. Initial analysis of the interview transcripts used a line-by-line approach, to identify recurring themes, connections, and patterns, before they were re-labelled and categorised. This was followed by axial coding, categorisation refinement, and mapping of diabetes triggers in the IOT. PARTICIPANTS AND SETTING: The IOT, consisting of Christmas Island and the Cocos (Keeling) Islands, are some of the most remote areas in Australia. When compared with mainland Australia, the prevalence of type 2 diabetes in the IOT is disproportionately higher. There were no known cases of type 1 diabetes at the time of the study. Like other remote communities, these communities experience difficulties in accessing health services to prevent and manage diabetes. Twenty health care professionals and health service administrators in the IOT took part in semi-structured telephone interviews held during April-June 2020. Participants included GPs, nurses, dietitians, social and community services workers, school principals, and administrators. The interview questions focused on their perceptions of the current diabetes care in place in the IOT and their views on the challenges of providing diabetes care in the IOT. RESULTS: We identified four main barriers and two main enabling factors to the provision of effective diabetes care in the IOT. The barriers were: (i) societal influences; (ii) family; (iii) changing availability of food; (v) sustainability and communication. The two main enablers were: (i) tailoring interventions to meet local and cultural needs and values; and (ii) proactive compliance with the medical model of care. CONCLUSION: Due to the cultural and linguistic diversity within the IOT, many of the identified barriers and enablers are unique to this community and need to be considered and incorporated into routine diabetes care to ensure successful and effective delivery of services in a remote context.

Diagnostic delay of sarcoidosis: Protocol for an integrated systematic review.

INTRODUCTION: Sarcoidosis is a rare systemic inflammatory granulomatous disease of unknown cause. It can manifest in any organ. The incidence of sarcoidosis varies across countries, and by ethnicity and gender. Delays in the diagnosis of sarcoidosis can lead to extension of the disease and organ impairment. Diagnosis delay is attributed in part to the lack of a single diagnostic test or unified commonly used diagnostic criteria, and to the diversity of disease manifestations and symptom load. There is a paucity of evidence examining the determinants of diagnostic delay in sarcoidosis and the experiences of people with sarcoidosis related to delayed diagnosis. We aim to systematically review available evidence about diagnostic delay in sarcoidosis to elucidate the factors associated with diagnostic delay for this disease in different contexts and settings, and the consequences for people with sarcoidosis. METHODS AND ANALYSIS: A systematic search of the literature will be conducted using PubMed/Medline, Scopus, and ProQuest databases, and sources of grey literature, up to 25th of May 2022, with no limitations on publication date. We will include all study types (qualitative, quantitative, and mixed methods) except review articles, examining diagnostic delay, incorrect diagnosis, missed diagnosis or slow diagnosis of all types of sarcoidosis across all age groups. We will also examine evidence of patients' experiences associated with diagnostic delay. Only studies in English, German and Indonesian will be included. The outcomes we examine will be diagnostic delay time, patients' experiences, and factors associated with diagnostic delay in sarcoidosis. Two people will independently screen the titles and abstracts of search results, and then the remaining full-text documents against the inclusion criteria. Disagreements will be resolved with a third reviewer until consensus is reached. Selected studies will be appraised using the Mixed Methods Appraisal Tool (MMAT). A meta-analysis and subgroup analyses of quantitative data will be conducted. Meta-aggregation methods will be used to analyse qualitative data. If there is insufficient data for these analyses, a narrative synthesis will be conducted. DISCUSSION: This review will provide systematic and integrated evidence on the diagnostic delay, associated factors, and experiences of diagnosis delay among people with all types of sarcoidosis. This knowledge may shed light on ways to improve diagnosis delays in diagnosis across different subpopulations, and with different disease presentations. ETHICS AND DISSEMINATION: Ethical approval will not be required as no human recruitment or participation will be involved. Findings of the study will be disseminated through publications in peer-reviewed journals, conferences, and symposia. TRIAL REGISTRATION: PROSPERO Registration number: CRD42022307236. URL of the PROSPERO registration: https://www.crd.york.ac.uk/PROSPEROFILES/307236_PROTOCOL_20220127.pdf.

Toward Diabetes Device Development That Is Mindful to the Needs of Young People Living With Type 1 Diabetes: A Data- and Theory-Driven Qualitative Study.

BACKGROUND: An important strategy to understand young people's needs regarding technologies for type 1 diabetes mellitus (T1DM) management is to examine their day-to-day experiences with these technologies. OBJECTIVE: This study aimed to examine young people's and their caregivers' experiences with diabetes technologies in an exploratory way and relate the findings to the existing technology acceptance and technology design theories. On the basis of this procedure, we aimed to develop device characteristics that meet young people's needs. METHODS: Overall, 16 in-person and web-based face-to-face interviews were conducted with 7 female and 9 male young people with T1DM (aged between 12 and 17 years) and their parents between December 2019 and July 2020. The participants were recruited through a pediatric diabetes clinic based at Canberra Hospital. Data-driven thematic analysis was performed before theory-driven analysis to incorporate empirical data results into the unified theory of acceptance and use of technology (UTAUT) and value-sensitive design (VSD). We used the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist for reporting our research procedure and findings. In this paper, we summarize the key device characteristics that meet young people's needs. RESULTS: Summarized interview themes from the data-driven analysis included aspects of self-management, device use, technological characteristics, and feelings associated with device types. In the subsequent theory-driven analysis, the interview themes aligned with all UTAUT and VSD factors except for one (privacy). Privacy concerns or related aspects were not reported throughout the interviews, and none of the participants made any mention of data privacy. Discussions around ideal device characteristics focused on reliability, flexibility, and automated closed loop systems that enable young people with T1DM to lead an independent life and alleviate parental anxiety. However, in line with a previous systematic review by Brew-Sam et al, the analysis showed that reality deviated from these expectations, with inaccuracy problems reported in continuous glucose monitoring devices and technical failures occurring in both continuous glucose monitoring devices and insulin pumps. CONCLUSIONS: Our research highlights the benefits of the transdisciplinary use of exploratory and theory-informed methods for designing improved technologies. Technologies for diabetes self-management require continual advancement to meet the needs and expectations of young people with T1DM and their caregivers. The UTAUT and VSD approaches were found useful as a combined foundation for structuring the findings of our study.

Behaviours of Patients Who Take Their Strong Opioids as Unmeasured 'Sips'.

CONTEXT: Some patients take their strong opioid painkillers as unmeasured sips. OBJECTIVES: To investigate how and why patients take their medication in this way. METHODS: Patient receiving specialist palliative care who take their strong opioid painkillers as unmeasured sips were recruited. Measurement was made of the mass of two sips per patient and qualitative interviews using a topic guide were conducted. Interview transcripts were thematically analyzed using a phenomenological approach. RESULTS: Only two of 16 patients were taking within 20% of the correct dose of their breakthrough liquid strong analgesia. Many varied the dose depending on the severity of the pain episode. Convenience, confusion about the correct dose, and issues with spoons were the other main reasons for people choosing to sip. CONCLUSION: This is the first published study exploring the behavior of patients who take their strong analgesia as unmeasured sips. Knowing that patients who sip are likely to be taking an incorrect dose, and the reasons behind sipping may help clinicians to help these patients to manage their pain better.