Development of a program theory for osteoporosis patient education in Denmark: a qualitative study based on realist evaluation.

BACKGROUND: Osteoporosis patient education is offered in many countries worldwide. When evaluating complex interventions like these, it is important to understand how and why the intervention leads to effects. This study aimed to develop a program theory of osteoporosis patient education in Danish municipalities with a focus on examining the mechanisms of change i.e. what is about the programs that generate change. METHODS: The program theory was developed in an iterative process. The initial draft was based on a previous published systematic review, and subsequently the draft was continually refined based on findings from observations (10 h during osteoporosis patient education) and interviews (individual interviews with six employees in municipalities and three health professionals at hospitals, as well as four focus group interviews with participants in patient education (in total 27 informants)). The transcribed interviews were analyzed using thematic analysis and with inspiration from realist evaluation the mechanisms as well as the contextual factors and outcomes were examined. RESULTS: Based on this qualitative study we developed a program theory of osteoporosis patient education and identified four mechanisms: motivation, recognizability, reassurance, and peer reflection. For each mechanism we examined how contextual factors activated the mechanism as well as which outcomes were achieved. For instance, the participants' motivation is activated when they meet in groups, and thereafter outcomes such as more physical activity may be achieved. Recognizability is activated by the participants' course of disease, which may lead to better ergonomic habits. Reassurance may result in more physical activity, and this mechanism is activated in newly diagnosed participants without previous fractures. Peer reflection is activated when the participants meet in groups, and the outcome healthier diet may be achieved. CONCLUSIONS: We developed a program theory and examined how and why osteoporosis patient education is likely to be effective. Understanding these prerequisites is important for future implementation and evaluation of osteoporosis patient education.

Living with schizophrenia and type 2 diabetes and the implication for diabetes self-care: A qualitative study.

AIM: To achieve an in-depth understanding of the challenges associated with diabetes management when having both schizophrenia and type 2 diabetes, while also identifying the needs for improved diabetes self-care. DESIGN: The study employed a qualitative explorative design utilizing a phenomenological-hermeneutic inspired approach, involving field observations and individual semistructured interviews. METHODS: Data were collected during 2020-2021 through 17 field observations of outpatient consultations and 13 individual semistructured interviews. Data, including field notes and verbatim transcribed interviews, underwent analysis following Ricoeur's interpretive philosophy, encompassing three levels: naïve reading, structural analysis and critical interpretation and discussion. This study adheres to the COREQ guidelines for qualitative research. RESULTS: Three key themes emerged: 'Diabetes when life is noisy', 'Sacrifices and compromises in life' and 'The double silence'. Everyday life is significantly affected when having both schizophrenia and T2D. The mental health state dominates in relation to diabetes self-care and individuals experience challenges balancing between the two conditions. However, there exists a general acknowledgement for diabetes and its long-term complications as a serious medical condition demanding careful attention and treatment. CONCLUSION: Self-managing two such complex conditions can be overwhelming and make it difficult for the individual to differentiate symptoms and prioritize diabetes care. Moreover, the existing fragmentation within healthcare systems poses communication challenges, resulting in disjointed patient pathways. IMPLICATIONS FOR PATIENT CARE: The study emphasizes the need for a holistic re that addresses the physical, emotional and social challenges. There is also a need for increased awareness and education among informal caregivers and healthcare professionals to foster better understanding and support.

Mobilisation during mechanical ventilation: A qualitative study exploring the practice of conscious patients, nurses and physiotherapists in intensive care unit.

AIM: To explore the practice of mobilisation of conscious and mechanically ventilated patients and the interaction between patients, nurses and physiotherapists. BACKGROUND: Long-term consequences of critical illness can be reduced by mobilisation starting in Intensive Care Units, but implementation in clinical practice is presently sparse. DESIGN: A qualitative study with a phenomenological-hermeneutic approach. METHODS: Participant observations in three Intensive Care Units involved twelve conscious mechanically ventilated patients, thirty-one nurses and four physiotherapists. Additionally seven semi-structured patient interviews, respectively at the ward and after discharge and two focus group interviews with healthcare professionals were conducted. The data analysis was inspired by Ricoeur's interpretation theory. The study adhered to the COREQ checklist. FINDINGS: Healthcare professionals performed a balance of support and guidance to promote mobilisation practice. The complexity of ICU mobilisation required a flexible mobility plan. Furthermore, interaction with feedback and humour was found to be 'a leverage' for patient's motivation to partake in mobilisation. The practice of mobilisation found patients striving to cope and healthcare professionals promoting a 'balanced standing by' and negotiating the flexible mobility plan to support mobilisation. CONCLUSION: The study revealed a need to clarify interprofessional communication to align expectations towards mobilisation of conscious and mechanically ventilated patients. RELEVANCE TO CLINICAL PRACTICE: The study demonstrated the important role of healthcare professionals to perform a stepwise and 'balanced standing by' in adequately supporting and challenging the mobilisation of mechanically ventilated patients. Furthermore, a synergy can arise when nurses and physiotherapists use supplementary feedback and humour, and cooperate based on a flexible situation-specific mobility plan in intensive care.

Certified Registered Nurse Anesthetists' Experiences of Nursing in Anesthesia Care: An Interview Study.

PURPOSE: The purpose of this study was to understand certified registered nurse anesthetists' (CRNAs) experiences of nursing in anesthesia care. DESIGN: An explorative qualitative study was conducted with inspiration from Ricoeur's hermeneutic phenomenological theory of interpretation. METHODS: Three focus group interviews were carried out with participants representing 5 anesthesiology departments from 3 hospitals in Denmark (a total of 14 participants). The participants were all CRNAs. The transcribed interviews were examined as one coherent text using a Ricoeur-inspired approach, in which the analysis was conducted on three levels: naive reading, structural analysis, and critical interpretation. FINDINGS: The structural analysis identified three themes relevant to the CRNAs' experiences of nursing: (1) the relationship with the patient, in which caring and professionalism are equally important; (2) differences between professions when sitting in the operating room; and (3) conflicts between production and caring. The study showed that CRNAs are aware of their professional identities as nurses and view anesthesia nursing as an integration of technical tasks and caring, in which the relationship with the patient and serving as the patient's representative are central. A major aspect of nursing is performed while the patient is anesthetized, and the CRNA attends to the patient's basic needs. The study also found that CRNAs find it difficult to define nursing in anesthesia care because of the overlapping tasks and skills between CRNAs and anesthesiologists. CONCLUSIONS: CRNAs are very aware of their professional identities as nurses. The professionalism involved in their relationships with patients is evident in the CRNAs' representation of the patients themselves.

Exploring critically ill patients' and their relatives' experiences of intensive care unit during COVID-19: A qualitative study.

BACKGROUND: Admission to an intensive care unit has physiological and psychological consequences for patients and families, including the family's fear that the patient might die. The COVID-19 pandemic underlined this and furthermore involved visiting restrictions separating patients and families. AIM: To explore how patients with confirmed COVID-19 and their relatives experienced an intensive care unit stay and its significance for family dynamics. STUDY DESIGN: A qualitative study was performed during the spring of 2020. Five dyadic interviews were conducted with COVID-19 patients admitted to an intensive care unit and their relatives. The analysis was inspired by Hochman's dyadic analysis. FINDINGS: The analysis revealed three themes: (1) From ill to critically ill: The trauma of separation and fear of losing loved ones; (2) The relatives' significant role in creating a shared coherent understanding of the admission in ICU due to COVID-19; (3) The nurses' roles as a go-between in maintenance of the family dynamic. CONCLUSION: Separation challenged family function and destabilized family dynamics. Nurses provided emotional support, information about and contact with the patient and relatives. The patients' distorted perception of reality and lack of memory were reconstructed in new family narratives, which offered relief and stabilization of family dynamics. The nurses entered into a triad with the patient and relatives, which also contributed to maintaining a relational dynamic in the family. RELEVANCE TO CLINICAL PRACTICE: Maintaining communication between health professionals, relatives and patients, and usage of virtual visits during intensive care unit stay can support the family relationship. Nurse therapeutic conversations might help families' in redefining their family dynamics after ICU admission.

Daily variation in physical activity during mechanical ventilation and stay in the intensive care unit.

BACKGROUND: Early mobilisation of mechanically ventilated patients during their stay at an intensive care unit (ICU) can improve physical recovery. Yet, an objective and specified description of physical activities while in the ICU is lacking. Therefore, our aim was to describe the objectively assessed type, quantity, and daily variation of physical activity among mechanically ventilated patients while in the ICU. METHOD: In an observational study in two mixed medical/surgical ICUs, we measured body posture in 39 patients on mechanical ventilation using a thigh- and chest-worn accelerometer while in the ICU. The accelerometer describes time spent lying, sitting, moving, in-bed cycling, standing and walking. Descriptive analysis of physical activity and daily variation was done using STATA. RESULTS: We found that mechanically ventilated patients spend 20/24 h lying in bed, 3 h sitting and only 1 h standing, moving, walking or bicycling while in the ICU. Intervals of non-lying time appeared from 9.00 to 12.00 and again from 18.00 to 21.30, with peaks at the hours of 9.00 and 18.00. CONCLUSION: ICU patients on mechanical ventilation were primarily sedentary. Physical activity of mechanically ventilated patients seems to be related to nurse- and/or physiotherapy-initiated activities. There is a need to create an awareness of improving clinical routines, towards active mobilisation throughout the day, for this vulnerable patient population during their stay in the ICU.

Person-specific evidence has the ability to mobilize relational capacity: A four-step grounded theory developed in people with long-term health conditions.

Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended.

Australian and Danish nurses' and midwives' wellbeing during COVID-19: A comparison study.

Background: Most investigations of nurses' and midwives' psychological wellbeing during the COVID-19 pandemic have been conducted in a single setting. Aim: To assess and compare the psychological wellbeing of nurses and midwives in Australia and Denmark during the COVID-19 pandemic. Methods: Nurses and midwives employed at four metropolitan health services in Australia and one in Denmark completed an anonymous online survey, which assessed depression, anxiety, and stress symptoms (The Depression, Anxiety and Stress Scale - 21 Items (DASS-21)), and sociodemographic and employment factors. Findings: Completed surveys were received from 3001 nurses and midwives (1611 Australian and 1390 Danish). Overall, approximately one in seven of the nurses and midwives surveyed reported moderate to extremely severe levels of depression (n = 399, 13.5%), anxiety (n = 381, 12.9%) and stress (n = 394, 13.4%). Australian nurses' and midwives' scores on all DASS-21 subscales were significantly higher (representing higher levels of depression, anxiety and stress) than the scores for the Danish nurses and midwives. Fewer years of clinical experience, living in Australia and being employed on a part-time basis were significantly associated with higher levels of psychological distress. Discussion: A considerable proportion of nurses and midwives experienced distress during the COVID-19 pandemic; however, the proportion and severity varied by country. Australian nurses and midwives experienced higher levels of distress than their Danish colleagues. Conclusion: Nurses and midwives working in countries with relatively low numbers of COVID-19 cases and deaths are also likely to experience psychological distress. Nurses and midwives would benefit from targeted country-specific support and wellbeing initiatives.

The role of parental support for emerging adults with type 1 diabetes: A scoping review.

BACKGROUND: Emerging adults with type 1 diabetes often have poor diabetes self-care and pose a considerable therapeutic challenge. They simultaneously handle a life phase characterized by instability, identity exploration, and transitions and manage a chronic illness that demands structure, self-discipline, and repeated health care contacts. Relation to parents is often ambivalent but typically remains the most stable social support, so parental support could potentially be helpful for diabetes self-care and wellbeing. METHOD: This scoping review aimed to identify, summarize and analyze empirical studies (for instance interview studies, questionnaire studies and intervention studies) exploring parental support for emerging adults with type 1 diabetes. Studies were identified in PsycInfo, PubMed, Scopus, and Google Scholar. Data were extracted by one author and checked by another. Study results were synthesized by a convergent mixed methods approach and qualitative thematic analysis. RESULTS: We included 26 studies (2829 participants), 16 interview studies, 10 questionnaire studies, and no intervention studies. Five overarching themes were identified: self-care and glycemic control, diabetes-related emotional wellbeing, support characteristics, ambivalence and harms, and core support providers. Parents tended to contribute positively to diabetes self-care, glycemic control, and psychological wellbeing. However, emerging adults did not want to be too dependent on their parents and family, and family could also act unsupportively; when absent, disinterested in diabetes or controlling. CONCLUSION: This review underlines that parental support still plays a role for diabetes self-care and wellbeing in emerging adults with type 1 diabetes. Age-appropriate parental support therefore seems a promising path to investigate further.

The risk-stratified osteoporosis strategy evaluation study (ROSE): a randomized prospective population-based study. Design and baseline characteristics.

The risk-stratified osteoporosis strategy evaluation study (ROSE) is a randomized prospective population-based study investigating the effectiveness of a two-step screening program for osteoporosis in women. This paper reports the study design and baseline characteristics of the study population. 35,000 women aged 65-80 years were selected at random from the population in the Region of Southern Denmark and-before inclusion-randomized to either a screening group or a control group. As first step, a self-administered questionnaire regarding risk factors for osteoporosis based on FRAX(®) was issued to both groups. As second step, subjects in the screening group with a 10-year probability of major osteoporotic fractures ≥15% were offered a DXA scan. Patients diagnosed with osteoporosis from the DXA scan were advised to see their GP and discuss pharmaceutical treatment according to Danish National guidelines. The primary outcome is incident clinical fractures as evaluated through annual follow-up using the Danish National Patient Registry. The secondary outcomes are cost-effectiveness, participation rate, and patient preferences. 20,904 (60%) women participated and included in the baseline analyses (10,411 in screening and 10,949 in control group). The mean age was 71 years. As expected by randomization, the screening and control groups had similar baseline characteristics. Screening for osteoporosis is at present not evidence based according to the WHO screening criteria. The ROSE study is expected to provide knowledge of the effectiveness of a screening strategy that may be implemented in health care systems to prevent fractures.

Wider institutional research cultures and their influence on patient and public involvement and engagement in health research - An institutional ethnography.

Focus on patient and public involvement and engagement (PPIE) is increasing in health policy and research governance. PPIE is considered by some to be a democratic right, and by others to be a way to improve health care and research outcomes and implementation. Most recently, policy makers, funders and (clinical) research institutions are making PPIE a strategic requirement for health research urging researchers to invite patients and relatives into their research activities. Our study is based in a Danish university hospital where PPIE has been introduced as one of five strategic research goals. We investigated how researchers experienced this new practice and how their research practices connect to the wider context of the Danish health care system. Ten cases were studied during a year using observations, interviews, and document analysis. As our method of inquiry, we used institutional ethnography to look at researchers' work from their perspective and to understand how PPIE practices are part of a larger institutional research culture reaching far beyond the individual. We found that current research culture has implications for the selection of patients and relatives and for what they are asked to do. Researchers who experienced that PPIE outcomes aided their existing research practices felt motivated. Researchers who engaged patients and relatives before it was a strategy, were ideologically driven and their approaches resulted in an increased diversity of inclusion and researcher assimilation. These findings add to the current knowledge on PPIE practices and help us understand that further development towards collaborative research practices require a change in key performance indicators and training and perhaps call for attention to our shared acceptance of knowledge generation in research.

Ten-year follow-up of fracture risk in a systematic population-based screening program: the risk-stratified osteoporosis strategy evaluation (ROSE) randomised trial.

Background: Osteoporotic fractures pose a growing public health concern. Osteoporosis is underdiagnosed and undertreated, highlighting the necessity of systematic screening programs. We aimed to evaluate the effectiveness of a two-step population-based osteoporotic screening program. Methods: This ten-year follow-up of the Risk-stratified Osteoporosis Strategy Evaluation (ROSE) randomized trial tested the effectiveness of a screening program utilizing the Fracture Risk Assessment Tool (FRAX) for major osteoporotic fractures (MOF) to select women for dual-energy x-ray absorptiometry (DXA) scan following standard osteoporosis treatment. Women residing in the Region of Southern Denmark, aged 65-80, were randomised (single masked) into a screening or a control group by a computer program prior to inclusion and subsequently approached with a mailed questionnaire. Based on the questionnaire data, women in the screening group with a FRAX value ≥15% were invited for DXA scanning. The primary outcome was MOF derived from nationwide registers. ClinicalTrials.gov: NCT01388244, status: Completed. Findings: All randomised women were included February 4, 2010-January 8, 2011, the same day as approached to participate. During follow-up, 7355 MOFs were observed. No differences in incidences of MOF were identified, comparing the 17,072 women in the screening group with the 17,157 controls in the intention-to-treat analysis (IRR 1.01, 0.95; 1.06). However, per-protocol, women DXA-scanned exhibited a 14% lower incidence of MOF (IRR 0.86, 0.78; 0.94) than controls with a FRAX value ≥15%. Similar trends were observed for hip fractures, all fractures, and mortality. Interpretation: While the ROSE program had no overall effect on osteoporotic fracture incidence or mortality it showed a preventive effect for women at moderate to high risk who underwent DXA scans. Hence the overall effect might have been diluted by those who were not at an intervention level threshold risk or those who did not show up for DXA. Using self-administered questionnaires as screening tools may be inefficient for systematic screening due to the low and differential screening uptake. Funding: INTERREG and the Region of Southern Denmark.

Network of doctors for multimorbidity and diabetes - the NOMAD intervention: protocol for feasibility trial of multidisciplinary team conferences for people with diabetes and multimorbidity.

BACKGROUND: The prevalence of diabetes and coexisting multimorbidity rises worldwide. Treatment of this patient group can be complex. Providing an evidence-based, coherent, and patient-centred treatment of patients with multimorbidity poses a challenge in healthcare systems, which are typically designed to deliver disease-specific care. We propose an intervention comprising multidisciplinary team conferences (MDTs) to address this issue. The MDT consists of medical specialists in five different specialities meeting to discuss multimorbid diabetes patients. This protocol describes a feasibility test of MDTs designed to coordinate care and improve quality of life for people with diabetes and multimorbidity. METHODS: A mixed-methods one-arm feasibility test of the MDT. Feasibility will be assessed through prospectively collected data. We will explore patient perspectives through patient-reported outcomes (PROs) and assess the feasibility of electronic questionnaires. Feasibility outcomes are recruitment, PRO completion, technical difficulties, impact of MDT, and doctor preparation time. During 17 months, up to 112 participants will be recruited. We will report results narratively and by the use of descriptive statistics. The collected data will form the basis for a future large-scale randomised trial. DISCUSSION: A multidisciplinary approach focusing on better management of diabetic patients suffering from multimorbidity may improve functional status, quality of life, and health outcomes. Multimorbidity and diabetes are highly prevalent in our healthcare system, but we lack a solid evidence-based approach to patient-centred care for these patients. This study represents the initial steps towards building such evidence. The concept can be efficiency tested in a randomised setting, if found feasible to intervention providers and receivers. If not, we will have gained experience on how to manage diabetes and multimorbidity as well as organisational aspects, which together may generate hypotheses for research on how to handle multimorbidity in the future. ADMINISTRATIVE INFORMATION: Protocol version: 01 TRIAL REGISTRATION: NCT05913726 - registration date: 21 June 2023.

Can online and app-based interventions be used by people with diabetes to reduce diabetes distress? A protocol for a scoping review.

INTRODUCTION: Diabetes distress has been defined as "the negative emotional or affective experience resulting from the challenge of living with the demands of diabetes". Diabetes distress affects 20%-25% of individuals living with diabetes and can have negative effects on both diabetes regulation and quality of life. For people living with diabetes distress, innovative tools/interventions such as online or app-based interventions may potentially alleviate diabetes distress in a cost-effective way. The specific research questions of this scoping review are: (1) what are the effects of online or app-based interventions on diabetes distress for adults with type 1 or type 2 diabetes, and (2) what are the characteristics of these interventions (eg, type of intervention, duration, frequency, mode of delivery, underlying theories and working mechanisms)? METHODS AND ANALYSIS: A scoping review will be conducted, using the methodological framework of Arksey and O'Malley along with Levac et al. Eligible studies are: studies of adults ≥18 years old with type 1 or 2 diabetes using an online or app-based intervention and assessing diabetes distress as the primary or secondary outcome. Five databases (Medline, EMBASE, CINAHL, PsycINFO and Scopus) will be searched and is limited to articles written in English, Danish, Norwegian, Swedish or Dutch. Two reviewers will independently screen potentially eligible studies in Covidence, select studies, and together chart data, collate, summarise, and report the results. We will adhere to the Preferred reporting Items for Systematic Reviews and Meta-Analysis for Scoping Reviews (PRISMA-ScR). ETHICS AND DISSEMINATION: The scoping review has been exempt from full ethical review by the Regional Committees on Health Research Ethics for Southern Denmark (case number: S-20232000-88). The results of the review will be published in a peer-reviewed journal and presented at relevant conferences and workshops with relevant stakeholders.

The development of an IT-based intervention to support a healthy postpartum lifestyle through behavioral change.

Background: Pregnancy and the postpartum period are difficult times with increased risks of weight gain and weight retention. This study aims to provide new insights into developing and designing information an communication technology interventions to support a healthy postpartum lifestyle through behavioral changes.Methods: A participatory design approach, combined with the behavior change wheel, was applied. The intervention was based on outcomes from co-creation with postpartum parents, healthcare professionals, IT consultants, and researchers.Results: An intervention was developed that reflects users' requests and needs to support a healthy postpartum lifestyle through behavioral change. The intervention includes podcasts, video exercises, weight tracking, and weekly push notifications.Conclusion: Developing an intervention to support a healthy postpartum lifestyle is feasible using both a participatory design and the behavior change wheel.

Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research.

BACKGROUND: Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships. METHODS: Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article. RESULTS: Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time. CONCLUSIONS: Researchers' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.

This article investigates how other articles describe the roles patients, relatives and researchers have in patient and public involvement activities in health research. It also investigates which factors are supportive of creating these research partnerships. We searched four health research databases and found 70 relevant articles which somehow evaluated patient involvement activities in research. From these 70 articles we chose 40 which we closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, we used a tool called the Involvement Matrix which uses five different roles: Listener (who is given information), Co-thinker (who is asked to give opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). We found that it is often researchers who take on the role of Decision-maker and that involvement often happens on their terms. We noticed that patients and relatives most often had the role of partner, when they were listed as co-authors of the article. This shows co-authorship as an authorization of their work during patient and public involvement activities. We found that patient and relative training, patients' and relatives' personality and communication skills, trust, financial reimbursement, and time were mentioned most often as enablers of good research partnerships.

Self-determination theory interventions versus usual care in people with diabetes: a systematic review with meta-analysis and trial sequential analysis.

BACKGROUND: Autonomy-supporting interventions, such as self-determination theory and guided self-determination interventions, may improve self-management and clinical and psychosocial outcomes in people with diabetes. Such interventions have never been systematically reviewed assessing both benefits and harms and concurrently controlling the risks of random errors using trial sequential analysis methodology. This systematic review investigates the benefits and harms of self-determination theory-based interventions compared to usual care in people with diabetes. METHODS: We used the Cochrane methodology. Randomized clinical trials assessing interventions theoretically based on guided self-determination or self-determination theory in any setting were eligible. A comprehensive search (latest search April 2022) was undertaken in CENTRAL, MEDLINE, Embase, LILACS, PsycINFO, SCI-EXPANDED, CINAHL, SSCI, CPCI-S, and CPCI-SSH to identify relevant trials. Two authors independently screened, extracted data, and performed risk-of-bias assessment of included trials using the Cochrane risk-of-bias tool 1.0. Our primary outcomes were quality of life, all-cause mortality, and serious adverse events. Our secondary outcomes were diabetes distress, depressive symptoms, and nonserious adverse events not considered serious. Exploratory outcomes were glycated hemoglobin and motivation (autonomy, controlled, amotivation). Outcomes were assessed at the end of the intervention (primary time point) and at maximum follow-up. The analyses were conducted using Review Manager 5.4 and Trial Sequential Analysis 0.9.5.10. Certainty of the evidence was assessed by GRADE. RESULTS: Our search identified 5578 potentially eligible studies of which 11 randomized trials (6059 participants) were included. All trials were assessed at overall high risk of bias. We found no effect of self-determination theory-based interventions compared with usual care on quality of life (mean difference 0.00 points, 95% CI -4.85, 4.86, I2 = 0%; 225 participants, 3 trials, TSA-adjusted CI -11.83, 11.83), all-cause mortality, serious adverse events, diabetes distress, depressive symptoms, adverse events, glycated hemoglobulin A1c, or motivation (controlled). The certainty of the evidence was low to very low for all outcomes. We found beneficial effect on motivation (autonomous and amotivation; low certainty evidence). CONCLUSIONS: We found no effect of self-determination-based interventions on our primary or secondary outcomes. The evidence was of very low certainty. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020181144.

The Use of Telehealth for Psychological Counselling of Vulnerable Adult Patients With Rheumatic Diseases or Diabetes: Explorative Study Inspired by Participatory Design.

BACKGROUND: Video consultation is increasingly used in different health care settings to reach patients. However, little is known about telehealth in psychological counselling for vulnerable patients with somatic and chronic conditions such as rheumatoid arthritis and diabetes. OBJECTIVE: This study aimed to develop and pilot test a telepsychology module for inclusion in the app My Hospital (Mit Sygehus) to provide remote psychological counselling to vulnerable adults with either rheumatic diseases or diabetes. METHODS: With inspiration from participatory design, the content of the telepsychology module was developed through user involvement and evaluated by individual interviews with patients and psychologists as well as questionnaires. RESULTS: We developed a module with our patient partners that targeted patients with rheumatic diseases and diabetes in relation to the psychological challenges of living with chronic diseases. The module included information, tools, exercises, and videoconferencing. In total, 16 patients and 3 psychologists participated in the pilot test. Psychological counselling was described by 4 themes: "The good relation despite physical distance," "The comfort of being at home," "The pros of saving time on transport and energy," and "A therapeutic alliance at a distance." CONCLUSIONS: Psychological counselling in relation to somatic care can be provided by videoconferencing supported by web-based or mobile delivery of tailored information, tools, and exercises without compromising on the quality of care. To ensure a good alliance between the patient and psychologist, a first face-to-face meeting is important. The home location provided patients with a safe environment and increased accessibility and reduced travel time to the hospital.