Testing Care and Morality: Everyday Testing During COVID-19 in Denmark.

COVID-testing was central to control the spread of infection in Denmark. Drawing on ethnographic fieldwork, we show that testing was not just a diagnostic sign; it was also a biosocial practice that enacted a public health morality, centered on responsibility, care, and belonging. We argue that testing led to a public healthicization of everyday life, as it moralized individual and collective behavior and created a moral divide between the tested and the untested. By attending to COVID-19 testing as a material-semiotic sign, we show how testing is embedded within a particular cultural and moral framework of the Danish welfare state.

Making It Count - Tracing Signs of Consciousness and Potentiality in Severe Brain Injury in Denmark.

Healthcare professionals use various technologies to evaluate and support patients who have suffered severe brain injuries. They integrate monitoring and sensory assessments into their clinical practice, and these assessments can have an impact on treatment decisions and prognostication. Responses from patients during different interactions are interpreted as "signs of consciousness" when considered contextually relevant. This study is based on anthropological fieldwork conducted in specialized Danish intensive care units, where we explore how signs of consciousness are made to count through practices of enactment. We ethnographically trace how the clinical concept of potential influences the interpretation of signs of consciousness as a complex biosocial practice based on the biomedical assumption that consciousness is a vital indicator of what makes a life. The article provides insights into the potential for recovery as an emergent biosocial practice and contributes to a broader discussion within medical anthropology of the moral landscapes of clinical and experimental borderlands.

Tinkering with symptoms, causes and solutions: Tracing the enactments of multiple chronic illnesses in specialised outpatient check-ups.

People living with multiple chronic illnesses and an increasing need for acute care is a global health challenge, which questions the conventional ways of managing illness. A central issue is how medical practices can become more patient-centred and aligned with the everyday life of patients. Communicative strategies for eliciting the patient's goals and preferences are often proposed. In this article, we draw on ethnographic data from fieldwork conducted during 2019-2020 in health-care settings and among people living with multiple chronic illness(es) and repeated acute admissions in Denmark. Inspired by science and technology studies of chronic illness and care, we trace the enactments of illness and illness work in a patient trajectory marked by persistent symptoms and medical complexity. We analyse three medical encounters, and we show how 'tinkering' with clinical signs and utterances in each encounter constantly enacts new versions, shaping how the patient could and should live with his illness. We argue that specialised outpatient check-ups for these patients must provide space for continuous tinkering with the concrete effects of illness in everyday life.

Visualising, navigating and making time: The use of a digital solution in treatment and rehabilitation from low back pain.

Illness trajectories are particularly characterised by the temporal dimension of human existence. In the area of low back pain, patients often have challenging temporal experiences such as unproductive waiting time and fragmented, repetitive consultations over many years. This study seeks to investigate relationships between digital technologies, temporal agency, and illness, through describing how users experienced a new digital solution, BackTrace, targeting patients with low back pain. The study builds on six months of ethnographic fieldwork, including semi-structured interviews, participant observation and a workshop. The study shows how the introduction of the digital solution could facilitate new possibilities of temporal actions for individuals living with and receiving care for low back pain. For many research participants, the use of BackTrace facilitated a useful visualisation of their past and present low back pain state; BackTrace could assist participants in navigating different external temporal demands; and it allocated time devoted to managing their back pain in everyday life and in consultations with health professionals. The study discusses how temporality can be a useful analytical entrance point to operationalise and explore the often-desired goal of empowerment in patient pathways.

The practice of information appraisal: An ethnographic study of a health information intervention.

As healthcare systems grow increasingly complex, greater demands are placed on patients' abilities to find, understand, appraise, and use health information - often termed their 'health literacy'. Most health literacy research does not focus on information appraisal. When it does, there is a tendency to equate it with patients' assessment of credibility. This reproduces a healthcare-centric understanding of information appraisal where patient agency is omitted. This study explores how participants in a health information intervention practiced information appraisal. The intervention aimed to increase information uptake for people with low back pain by delivering health information to them through animations. This study draws on ethnographic participant observation of the encounters between the intervention and its participants, including 49 rapid interviews and semi-structured telephone interviews with 23 participants carried out in the spring of 2021. Inspired by a social practice approach, the study thoroughly grounds the health literacy subcategory of 'appraisal' in practice. It illustrates that participants appraised the information provided in the intervention according to several factors. These include relating the information to their personal health needs, interpreting the intended audience of the health animations, and prioritising their attention situationally between the animations and other immediate concerns. We suggest that information appraisal is a fundamental component of health literacy and should be considered key in research, policy and practice. To accommodate current healthcare ideals of patient centeredness, empowerment and informed choice, the complex and dynamic ways in which people appraise health information need be considered legitimate practices of health literacy.

Perspectives on consciousness in patients with disorders of consciousness from brain injury: group concept mapping study across clinic, research, and families.

BACKGROUND: An effective healthcare system depends on clinic, research, and patient/relatives interactions. Such interactions may at their core be challenged by misalignments of concepts and the practices that constitute them. The concept of consciousness and what is experienced and understood as signs of consciousness in patients with severe acquired brain injury is one of these potential areas of misalignment. Different perspectives and experiences of consciousness are challenging the delivery of care and the high-stake decision-making process on the potential withdrawal of treatment. The enhanced uncertainties call for reflections on how key stakeholders perceive and identify consciousness in current clinical encounters and practice. METHODS: The study empirically explores the actual experiences and conceptions of consciousness concerning patients with disorders of consciousness (DoC) from the perspectives of researchers, health professionals, and relatives of patients, to understand the challenges of the diversity of understandings of consciousness. Engaging the stakeholders by employing Group Concept Mapping methodology, the study developed a situated conceptual map, which reflects nuances and the importance of perspectives on and signs of consciousness. RESULTS: Twenty-seven participants contributed to the generation of ideas, 14 took part in the structuring of statements and 10 took part in the validation meeting to interpret the cluster rating map. A total of 85 unique statements were identified and organized into six clusters: (1) Presence, (2) Intentional Activity, (3) Experience of self, (4) Participation in Social Interaction, (5) (Repeated) Response, and (6) Unspecific Reaction. The conceptual mapping demonstrates an extensive overlap in perspectives on consciousness among participants, prioritizing signs that are observable at the bedside. CONCLUSIONS: The study provides a first step toward a future framework for the difficult process of decision-making concerning a segment of patients with DoC. The study highlights the importance of repeatable signs of consciousness observed at the bedside and the patient's ability to participate in social interactions, while also considering the importance of non-clinically observable signs of consciousness.

Access to intervene. An ethnographic study of public health practices targeting health inequalities.

Much public health research has devoted attention to the question of how interventions aimed at reducing health inequalities can access so-called "hard-to-reach" populations. This work has generally reflected an instrumentalist approach, which implies the preexistence of particular target groups characterized by specific public health problems. The key research interests are to find ways to effectively alleviate health inequalities and to identify the best ways to intervene to address disparate health problems among certain groups of people. Based on ethnographic research with public health officers in four Danish municipalities, this article turns the issue on its head by examining how public health officers gain access to intervene in practice and, as part of this process, define and delineate target groups and public health problems. Through detailed descriptions of two ethnographic cases, we develop the argument that public health interventions carry with them moral differentiations that may contradict the overall intention of reducing health inequalities. We adopt a theoretical perspective developed by Lakoff and Collier, suggesting that public health interventions can be understood as "regimes of living." This leads us to the conclusion that the practices of gaining access result in the production of unforeseen target groups and new moral configurations where the value of health becomes linked to other types of value, most importantly economic value. For public health officers, the complicated issue of gaining access to intervene is not simply a matter of finding practical solutions; it also defines and delineates the scope of public health itself.

Measures used to assess interventions for increasing patient involvement in Danish healthcare setting: a rapid review.

OBJECTIVE: To identify measures used within Denmark evaluating any type of intervention designed to facilitate patient involvement in healthcare. DESIGN: Environmental scan employing rapid review methods. DATA SOURCES: MEDLINE, PsycInfo and CINAHL were searched from 6-9 April 2021 from database inception up to the date of the search. ELIGIBILITY CRITERIA: Quantitative, observational and mixed methods studies with empirical data on outcomes used to assess any type of intervention aiming to increase patient involvement with their healthcare. Language limitations were Danish and English. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data from 10% of the included studies and, due to their agreement, the data from the rest were extracted by first author. Data were analysed with reference to existing categories of measuring person-centred care; findings were synthesised using narrative summaries. Adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines were used to guide reporting. RESULTS: Among 3767 records, 43 studies met the inclusion criteria, including 74 different measures used to evaluate interventions aimed at increasing patient involvement within healthcare in Danish hospital and community settings. Generic measures assessed: patient engagement (n=3); supporting self-management (n=8); supporting shared decision-making (n=9); patient satisfaction and experiences of care (n=11); health-related patient-reported outcome (n=20). CONCLUSIONS: Across Denmark, complex interventions designed to improve patient involvement with healthcare vary in their goals and content. Some targeting healthcare professionals, some patient health literacy and some service infrastructure. A plethora of measures assess the impact of these interventions on patient, professional and service delivery outcomes. Few measures assessed patient involvement directly, and it is unclear which proxy measures capture indicators of perceived involvement. Lack of conceptual clarity between intervention goals, the components of change and measures makes it difficult to see what types of intervention can best support change in services to ensure patients are more effectively involved in their healthcare.

Discharge readiness as an infrastructure: Negotiating the transfer of care for elderly patients in medical wards.

The discharge from hospital is an essential care transition for elderly people with chronic illness, specifically because the responsibility for treatment and care is transferred between locations and healthcare staff. To optimise the use of healthcare resources in a time of progressively shorter hospital admissions and increasingly streamlined hospital care, discharges are highlighted as important moments to be handled with caution. Yet, discharges are expected to be "early" and "quick" procedures to maintain a flow of patients through the hospital. In this qualitative article, we use ethnographic methods to investigate how this apparent contradiction unfolds in everyday discharge situations through the work of establishing discharge readiness in three medical wards in a middle-sized Danish hospital. We use the lens of infrastructure to help us see how elements like patient screens, screen meetings, clinical (and embodied) signs and community health care criteria are interrelated in the work of establishing discharge readiness of patients. By looking closely into specific discharge situations, we analyse the way care needs are defined and how care work is transferred, and we identify the inherent uncertainties for health care professionals, patients and relatives. We show how clinical signs take precedence over embodied experience, and how complex situations are reduced to workable problems to enable discharge.

Increased shoulder pain across an exercise session and subsequent shoulder exercise: a prospective cohort study.

BACKGROUND: Shoulder complaints are common and the recommended first-line treatment is exercise therapy. However, it remains unknown if increased shoulder pain after an exercise session is a barrier for subsequent exercise dose, particularly in people with high fear-avoidance beliefs. Such knowledge could indicate ways to optimise shoulder rehabilitation. The aim was to examine whether increased shoulder pain across an exercise session was associated with a lower subsequent exercise dose, and if high fear-avoidance beliefs exaggerated this association. METHODS: We conducted a prospective cohort study using data from a randomised controlled trial in Central Denmark Region 2017-2019. Participants were employees (n = 79) with shoulder complaints and high occupational shoulder exposures. The intervention was a home-based or partly supervised exercise programme lasting 2-3 months. Linear mixed models were used to examine the associations between change in shoulder pain and exercise dose (number of repetitions, progression level (1-3), resistance level (1-3), and time until next exercise session [days]). RESULTS: At baseline, the participants had a median pain intensity at rest of 2 on a numerical rating scale (0-10). For a 1-cm increase in pain on a visual analogue scale (0-10 cm) during an exercise session, the subsequent number of repetitions, progression level and resistance level were - 1.3 (95% confidence interval [CI] - 3.4 to 0.9), 0.0 (95% CI - 0.1 to 0.0) and - 0.0 (95% CI - 0.1 to 0.0), respectively. Likewise, the time until next exercise session was - 0.6 (95% CI - 2.4 to 1.3) days for a 1-cm increase. There were no interactions with fear-avoidance beliefs. CONCLUSION: Increased pain across an exercise session was not associated with subsequent exercise dose, regardless of fear-avoidance beliefs, among employees with shoulder complaints and high occupational shoulder exposures. TRIAL REGISTRATION: The trial was registered at Clinicaltrials.gov 19/05/2017 (ID: NCT03159910).

Socio-Demographics, Pain Characteristics, Quality of Life and Treatment Values Before and After Specialized Interdisciplinary Pain Treatment: Results from the Danish Clinical Pain Registry (PainData).

BACKGROUND AND AIMS: PainData is an electronic internet-based clinical pain registry established to improve the understanding and treatment of high-impact chronic pain. The primary aim of this paper is to describe socio-demographics, pain characteristics, quality of life, and treatment values at baseline and follow-up in individuals referred to public and private interdisciplinary pain centers in Denmark between 2018 and 2020. METHODS: Self-reported patient-reported outcomes collected through PainData before (n=12,257) and after (n=4,111) treatment across 13 public and private interdisciplinary specialized pain centers in Denmark (87% of all pain centers in Denmark) are described. RESULTS: Mean duration of pain was 10 years, and one in three patients reported chronic widespread pain. More than 40% reported opioid use, and 50% had tried four or more different treatment modalities prior to referral. More than 60% reported poor sleep, severe fatigue, and memory and/or concentration deficits. Mean scores on pain catastrophizing, fear of movement, and pain-related disability were high, whereas scores on pain acceptance and self-efficacy were low. Physical and mental health were rated as poor and fair, respectively. One in four patients reported being very much improved or much improved after treatment. Items commonly reported after treatment were increased knowledge about pain, emotions and mood (66.5%), being better at accepting life with chronic pain (63.1%), and improved activity pacing (60.6%). CONCLUSION: The PainData registry, containing data from a large cohort of individuals, can help to improve the understanding and treatment of high-impact chronic pain, and collaborations with other researchers are welcome.

Sleep disturbance in patients attending specialized chronic pain clinics in Denmark: a longitudinal study examining the relationship between sleep and pain outcomes.

OBJECTIVES: Sleep disturbances are highly prevalent in patients with chronic pain. However, the majority of studies to date examining sleep disturbances in patients with chronic pain have been population-based cross-sectional studies. The aims of this study were to 1) examine the frequency of sleep disturbances in patients referred to two interdisciplinary chronic pain clinics in Denmark, 2) explore associations between sleep disturbances and pain intensity, disability and quality of life at baseline and follow-up, and 3) explore whether changes in sleep quality mediated the relationships between pain outcomes at baseline and pain outcomes at follow-up. METHODS: We carried out a longitudinal observational study, examining patients enrolled in two chronic pain clinics assessed at baseline (n=2,531) and post-treatment follow-up (n=657). Patients reported on their sleep disturbances using the sleep quality subscale of the Karolinska Sleep Questionnaire (KSQ), their pain intensity using 0-10 numerical rating scales, their pain-related disability using the Pain Disability Index (PDI), and quality of life using the EuroQol-VAS scale. The average time between baseline and follow-up was 207 days (SD=154). RESULTS: At baseline, the majority of patients reported frequent sleep disturbances. We found a significant association at baseline between self-reported sleep disturbances and pain intensity, pain-related disability, and quality of life, where greater sleep disturbance was associated with poorer outcomes. At follow-up, patients reported significant improvements across all pain and sleep outcomes. In two mediation models, we showed that changes in sleep disturbances from baseline to follow-up were significantly associated with (i) pain intensity at follow-up, and (ii) pain disability at follow-up. However, baseline pain intensity and disability scores were not associated with changes in sleep disturbances and, we did not find evidence for significant mediation of either pain outcome by changes in sleep disturbances. CONCLUSIONS: Self-reported sleep disturbances were associated with pain outcomes at baseline and follow-up, with greater sleep disturbances associated with poorer pain outcomes. Changes in sleep quality did not mediate the relationships between baseline and follow-up scores for pain intensity and disability. These findings contribute to a growing body of evidence confirming an association between sleep and chronic pain experience, particularly suggestive of a sleep to pain link. Our data following patients after interdisciplinary treatment suggests that improved sleep is a marker for a better outcome after treatment.

The paradox of project success despite lack of the "My Pathway" telehealth platform usage.

The article investigates the paradoxical success of a Danish telehealth project introducing the "My Pathway" platform to reduce the length of patient stays while maintaining patient satisfaction. These goals were achieved in the project, which was considered successful despite the lack of actual platform usage. Based on a qualitative, longitudinal case study we investigate this paradox by showing how barriers and facilitators have influenced telehealth adoption and use in the post-implementation process, affecting the overall success of the project. The study makes two contributions. First, it describes dynamics of adoption barriers, that is, that barriers are interrelated and influence adoption to varying degrees over time. Adoption barriers resulted in the telehealth platform not being used and it consequently only influenced the actual project success and goal achievement indirectly. Second, it highlights information management as a critical facilitator in telehealth adoption and use. Information management facilitated achievement of project goals despite the lack of actual use of "My Pathway," which explains the paradoxical project success. Based on these interpretations, we point to information management as a critical facilitator of the success of telehealth initiatives and provide recommendations for research and practice.

Disrupted everyday life in the trajectory of low back pain: A longitudinal qualitative study of the cross-sectorial pathways of individuals with low back pain over time.

Background: Low back pain is a leading cause of disability and sick days worldwide. This type of pain has a fluctuating and recurrent nature, and affects all aspects of a person's life, with profound psychosocial consequences. Objectives: This study aims to explore the everyday life of individuals with low back pain over time and across various contexts. Design: A longitudinal Grounded Theory study with the concept, conduct of everyday life, as the theoretical framework. Settings: The study was conducted in Denmark, and participants were sampled from a regional spine centre in a hospital context. Participants: Twenty-seven individuals with low back pain referred to a hospital for assessment and treatment for herniated discs were sampled. Participants were divided equally between women and men 37-71 years old. Method: Participants were followed through interviews and participant observation for 6-18 months. They were interviewed at least twice, at the beginning and end of the study period. The interviews took place in participants' homes. Data consisted of transcribed interviews and field notes. Results: Two themes, "When 'support' systems become disrupters" and "Adapting to a new life", describe important elements of the participants' conduct of everyday life through a period of low back pain and the time after. The first theme explains how healthcare and sickness benefit systems play an existential role in the individual's life during a period of low back pain. These systems made extensive, often conflicting, demands on participants, which challenged their everyday lives. The systems and their diverse needs could take precedence over other concerns, challenging participants' social self-understanding. In the second theme, we identified three typical patterns of how participants adapt to living with a potential exacerbation of low back pain over time: 1) Resignation, 2) Balancing and 3) Ignoring. Conclusions: From the participants' perspectives, healthcare and sickness benefits systems are supportive, but they often disrupt everyday life due to extensive and conflicting demands. Individuals with low back pain must continually adapt to everyday life. Therefore, professionals should support a balanced pattern of adapting to life with recurrent and fluctuating low back pain.

Reducing shoulder complaints in employees with high occupational shoulder exposures: study protocol for a cluster-randomised controlled study (The Shoulder-Café Study).

BACKGROUND: In Denmark, exercise therapy in combination with work modification is the first-choice treatment for persons with shoulder complaints and high occupational shoulder exposures. To obtain this treatment they must visit several healthcare providers, which makes usual care fragmented and uncoordinated. Therefore, we developed a new intervention which unifies the expertise that is needed. The main hypotheses are that a group-based Shoulder-Café intervention will more effectively reduce (1) shoulder complaints and (2) occupational shoulder exposures than an individual-based Shoulder-Guidance intervention (active control - enhanced usual care). METHODS: A cluster-randomised trial is conducted including 120 employees with high occupational shoulder exposures. Companies (clusters) are randomised to either Shoulder-Café or Shoulder-Guidance with a 1:1 allocation ratio. Participants are 18-65 years old and have an Oxford Shoulder Score (OSS) ≤ 40. Both interventions include a home-based shoulder-exercise programme, assessment of shoulder exposures by technical measurements and self-report, and general information on how to reduce shoulder exposures. The Shoulder-Café course also includes three café meetings with physiotherapist-supervised exercises, clinical shoulder evaluation, education on shoulder anatomy, workplace-orientated counselling, and an opportunity for a workplace visit by a health and safety consultant. The primary outcomes are the OSS at 6-month follow-up (hypothesis I), and the mean number of min/day with the arm elevated > 60° shortly after the end of the intervention (hypothesis II). We will use a mixed-model analysis that allows for company clustering, and data will be analysed according to the intention-to-treat principle. DISCUSSION: Persons with shoulder complaints and high occupational shoulder exposures are an obvious target group for secondary prevention efforts. We developed the Shoulder-Café to reduce shoulder complaints and shoulder exposures while unifying the expertise that is needed to evaluate and treat shoulder complaints. If the intervention is effective, it would warrant widespread implementation. TRIAL REGISTRATION: Clinicaltrials.gov, ID: NCT03159910. Registered on 18 May 2017.

Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences.

OBJECTIVES: The diagnosis and treatment of acute leukaemia (AL) affect physical, psychosocial and existential functioning. Long-lasting treatment periods with impaired immune system, hygienic and social restrictions challenge patient well-being and rehabilitation as compared with other individuals with cancer. This study elucidates how AL patients, treated with curative intent in an outpatient setting, assess their physical, psychosocial and existential capability during and following treatment, and furthermore reports on the health initiatives offered to support their rehabilitation. DESIGN, SETTING, PARTICIPANTS AND INTERVENTIONS: We conducted qualitative, semi-structured individual interviews with 16 AL patients, 6 months after end of treatment in the patients' homes. This was the final interview, in a line of three, carried out as part of a larger qualitative study. RESULTS: The data were analysed thematically through an inductive ongoing process consisting of four steps. The final step, selective coding, resulted in the three categories: physical activity, mental well-being and social activity. None of the patients were satisfied with their physical capability at the time of interview and experienced substantial impairment of functional capabilities. All patients struggled with anxiety and expressed a need for continuous progress in treatment and well-being to feel safe. It took an unexpected large effort to regain a meaningful social life, and patients still had to prioritise activities. CONCLUSIONS: AL patients suffered physically, psychologically and existentially throughout their illness trajectory. Rehabilitation initiatives deriving from the healthcare system and municipalities held room for improvement. Future programmes should pay attention to the contextual changes of treatment of this patient group and individuals' changing needs and motivation of physical exercise.

Lumbar Spine Fusion Patients' Use of an Internet Support Group: Mixed Methods Study.

BACKGROUND: Internet use within health care contexts offers the possibility to provide both health information and peer support. Internet Support Groups (ISGs) for patients may offer advantages, which are not found in face-to-face support. In patients undergoing lumbar spine fusion (LSF), ISGs could have a particular potential, as peer support on the web might bridge the decreased satisfaction with social life and social isolation found within these patients. ISGs might in this way contribute to increasing the functioning and overall health-related quality of life. However, LSF patients may generally belong to a group of citizens not prone to internet and online peer support. However, our knowledge of how LSF patients use ISGs is limited. OBJECTIVE: The aim of this study was to describe the characteristics of users of an ISG and thematically explore the content of ISG interactions in Danish patients undergoing instrumented LSF because of degenerative spine disorders. METHODS: Participants were recruited from a randomized controlled trial and included in a prospective cohort with a mixed methods design. Sociodemographic characteristics and information on psychological well-being (symptoms of anxiety and depression) were obtained at baseline and 1 to 5 weeks before surgery. Usage of the ISG was registered from baseline until 3 months after surgery. All posts and comments were collected, and content analysis was performed. RESULTS: A total of 48 participants comprised the study population, with a mean age of 53 years (range 29-77). Of the participants, 54% (26/48) were female, 85% (41/48) were cohabitating, 69% (33/48) were unemployed, and the majority (69% [33/48]) had secondary education. Approximately one-third of the participants had symptoms of depression (35%, 17/48) and anxiety (29%, 14/48). Overall, 90% (43/48) of the participants accessed the ISG. No correlations were found between sociodemographic characteristics and access to the ISG. Women were more prone to be active users, contributing with posts (P=.04). Finally, active users contributing with posts or comments had viewed more pages, whereas passive users, users without posts or comments, had more interactions with the ISG (P<.001). The ISG contained 180 conversation threads, generating 354 comments. The 180 conversation threads in the ISG were constituted by 671 independent dialogue sequences. On the basis of those 671 dialogue sequences, 7 thematic categories emerged. CONCLUSIONS: Sociodemographic characteristics were not predictors of ISG use in this study, and active use was found to be gender dependent. Content of interactions on the ISG emerged within 7 thematic categories and focused on social recognition, experience of pain or use of pain medication, experience of physical activity or physical rehabilitation, expression of psychosocial well-being, advising on and exploring the ISG, and employment, which seemed to correspond well with the prevalent occurrence of symptoms of anxiety and depression.

Living with outpatient management as spouse to intensively treated acute leukemia patients.

BACKGROUND: Spouses have a key position in the treatment of patients with acute leukemia (AL) who are increasingly managed in an outpatient setting. Patients live at home but appear at the hospital every second day for follow-up visits. Patients must adhere to specific precautions due to an impaired immune system, which challenges and influence the life of the whole family. This qualitative study, based on individual and group interviews with spouses to AL patients in curative intended treatment, elucidates how the intense and substantial caregiver role affects the everyday lives of spouses to AL patients in curative intended treatment. METHODS: Qualitative semi-structured group interviews (n = 6) and individual interviews (n = 5) with spouses to AL patients were conducted at different time points during the whole course of treatment. Theories of everyday life served as the theoretical framework. RESULTS: The spouses described their life as a constant state of vigilance and attention as a consequence of the responsibility they felt arising from the treatment in the outpatient setting. These made them experience their role as a burden. The social life of the spouses and the families suffered substantially due to the precautions that were instated in the home. However, many experienced that relations in the family were developed positively. CONCLUSIONS: Close relatives experience additional psychosocial burdens instigated by the outpatient management regimens. This is important knowledge for the health care system to include in future development of AL outpatient settings, to prioritize and support offers to the relatives that recognize their sense of burden. This could apply not only to relatives of AL patients but to the relatives of other severely ill patients as well.

Depressive symptoms and mental health-related quality of life in adolescence and young adulthood after early parental death.

Aims: Little is known about long-term mental health in young adults who participate in ongoing grief counseling programs after early parental death in childhood, adolescence or young adulthood. The purpose of this study was to examine mental health in young adults according to early parental death and participation in grief counseling. Methods: In a cross-sectional, questionnaire-based study, we included three samples of young adults age 18-41 years. One sample who had lost a parent between age 0 and 30 years and who had participated in grief counseling identified through four Danish grief-counseling organizations, and two registry-based samples of young adults included parentally bereaved and non-bereaved young adults. Multivariate-adjusted regression analyses were performed to characterize risk of depressive symptoms and mental health-related quality of life (HQoL) according to early parental death and participation in grief counseling. Results: A total of 2467 (45%) young adults participated. Bereaved young adults reported significantly more depressive symptoms (p<0.0001) and lower mental HQoL (p<0.0001) than non-bereaved young adults and than general population levels for both depressive symptoms (p<0.0001) and HQoL (p<0.0001). Bereaved young adults who had participated in grief counseling reported significantly more depressive symptoms (p<0.0001) and lower mental HQoL (p<0.0001) than bereaved persons who did not participate in grief counseling. Conclusions: Bereaved young adults report more mental health problems than non-bereaved young adults, and also after participation in grief counseling the death of a parent may be accompanied by subsequent mental health problems.

Does Information Become Actual Knowledge in Surgical Spine Patients? A Qualitative Study.

BACKGROUND: It is seldom questioned, if information delivered (to a patient) actually produces knowledge. There is a lack of understanding of how patients in general, surgical patients in particular, perceive, process, and translate clinical information in their everyday lives. The objective of this study was to elucidate how patients undergoing spinal fusion surgery manage and assimilate information provided by clinicians and how they adapt and embrace this information pre- and postsurgery. METHODS: The study employed qualitative methods of ethnographic observation and semistructured interview with a total of 14 individuals, that is, spinal fusion patients (n = 6) and clinicians (n = 8) over a 4-month period in 2014. RESULTS: The results highlight that in the course of treatment, patients embrace or reject information on the basis of their previous experience, expectations, and confidence in their own ability. Overall, patients adjusting to everyday life after spinal fusion surgery used 4 strategies of information processing about their individual life situation. Patients do not use just one of these strategies but may use a number of strategies depending on the situation. Such production of knowledge is pivotal to the behavior of patients through their treatment trajectory. CONCLUSIONS: This study points to the challenges of supporting patients to assimilate information and affect health-related behaviors, recognizing that knowledge and behavior change are emergent processes in patients and not a linear outcome of information.