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.

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.

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).

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.

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.

Patient information in phase 1 trials: A systematic review.

OBJECTIVE: To review what is known about cancer patients' decisions to enter a phase 1 trial and how they and their relatives perceive the information they receive when they are invited to participate. METHODS: This systematic review is based on the principles of "preferred reporting items for systematic reviews and meta-analyses." A systematic search was performed in the PubMed, Embase, and PsycInfo databases, supplemented by a search for unpublished literature. RESULTS: We identified 37 studies for inclusion in this review. Patients' decisions to participate in a phase 1 trial were influenced by the drug being tested, information procedures, physician-related factors, and the patient's individual approach to decision making. Patients have difficulties correctly repeating the purpose of a phase 1 trial. In several studies, most patients expressed expectations of personal benefit from participating. Studies performing analyses of the dialog demonstrated that the language of the physicians was incomplete. The relatives' perceptions of such information remain unexplored. Most studies had a comprehensive risk of bias. CONCLUSIONS: Patients' decisions regarding participation in phase 1 trials are based on more than the information of the trial. The way patients express the information they have been given could be limited by the applied methods for evaluating this variable. While relatives are expected to be resources for patients entering a phase 1 trial, this topic has not been investigated.

Predictors and reasons for help-seeking behavior among women with urinary incontinence.

INTRODUCTION AND HYPOTHESIS: The aim of the study was to evaluate the predictors and reasons for help-seeking behavior among women with urinary incontinence (UI) in Germany and Denmark. METHODS: This international postal survey was conducted in 2014. In each country, 4,000 women of at least 18 years of age were randomly selected. The questionnaires included validated items regarding help-seeking behavior and the ICIQ-UI SF. UI was defined as any involuntary loss of urine. Binary logistic regression analysis was used to assess factors predicting help-seeking behavior. Reasons for seeking or not seeking help were evaluated in terms of the severity of UI and as the most frequently reported. RESULTS: Of 1,063 Danish women with UI, 25.3% had consulted a physician compared with 31.4% of 786 German women with UI (p = 0.004). The severity and duration of UI, and actively seeking information regarding UI, were significant independent predictors of help-seeking behavior. Women with slight/moderate UI did not seek help because they did not consider UI as a problem, whereas of women with severe/very severe UI, German women reported that other illnesses were more important and Danish women reported that they did not have enough resources to consult a physician. CONCLUSIONS: Only a small proportion of women with UI had consulted a physician, and the driving forces for help-seeking behavior were severity and duration of UI and actively seeking information regarding UI. Public information campaigns might enhance consultation rates providing that passively receiving and actively seeking information have the same effects on help-seeking behavior. We show for the first time that reasons for not consulting a physician for UI vary depending on the severity of the UI.

Prevalence of urinary incontinence among women and analysis of potential risk factors in Germany and Denmark.

INTRODUCTION: Urinary incontinence (UI) is a prevalent condition that interferes with women's health-related quality of life. Prevalence rates from earlier studies are wide-ranging, due to heterogeneity in methodology, definition of UI and the populations included. We aimed to determine the prevalence of UI and associated risk factors in Germany and Denmark using the same methodology, definition and population. MATERIAL AND METHODS: A postal survey was conducted in two regions in Germany and Denmark, including 8000 women aged 18+ years. UI was defined as any complaint of involuntary loss of urine. The questionnaire contained socio-demographic questions and the International Consultation on Incontinence Modular Questionnaire Urinary Incontinence Short Form (ICIQ-UI SF). RESULTS: The response rate in Germany and Denmark was 46.2 and 66.6% (p < 0.001) and the prevalence rate of UI was 48.3 and 46.4% (p = 0.188), respectively. Stress urinary incontinence dominated among younger women, and urgency urinary incontinence and mixed urinary incontinence among women 80+ years in Germany and Denmark, respectively. The subgroup of women with body mass index (BMI) ≥35 had the highest prevalence of UI (67.3%). The subgroup of women with BMI <35 were more likely to have stress urinary incontinence, and the subgroup of women with BMI ≥35 were more likely to have mixed urinary incontinence. UI was significantly associated with age as with BMI, vaginal delivery, chronic obstructive pulmonary disease, and having at least one co-morbidity. CONCLUSIONS: Prevalence rates in the two regions in Germany and Denmark were similar, despite significantly different response rates. This difference may reflect various attitudes towards answering a questionnaire, but the response rate on questions concerning UI seemed consistent.

Risk of Use of Antidepressants Among Children and Young Adults Exposed to the Death of a Parent.

BACKGROUND: Insight into how early parental death impact psychological well-being in children and young adults is important to developing suitable supportive care. The purpose of this study was to investigate the association between early parental death before the child reaches age 30 years and subsequent use of antidepressants. METHODS: Our nationwide population-based cohort of persons born in Denmark in 1970-1990 with follow-up in the period 1997-2009 comprised 1,124,215 persons, of whom 71,380 were bereaved. We used Poisson models to assess rate ratios for use of antidepressants according to early parental death. RESULTS: Follow-up yielded 13,074,146 person-years at risk during which 93,347 persons used antidepressants. Persons who experienced early parental death had an increased risk for use of antidepressants (men: risk ratio, 1.21; 95% confidence interval, 1.16, 1.26; women: 1.23; 95% confidence interval, 1.19, 1.27). We observed stronger associations for women whose parent died by suicide than from other causes, who lost their mother rather than their father, and who lost a parent early rather than later. The increased risk remained more than 2 years from the loss. CONCLUSIONS: Persons who lost a parent had an increased risk of use of antidepressants. Subgroups with particularly increased risk, included women, who were bereaved by suicides, who experienced loss of a mother, and who were bereaved when young. The risk of initiating antidepressant use was increased both immediately after the loss and later. Our results support that early parental death severely affects children`s psychological well-being.

Outpatient management of intensively treated acute leukemia patients--the patients' perspective.

PURPOSE: In recent years, patients with acute leukemia (AL) have, to a greater extent, been managed in an outpatient setting where they live at home but appear every other day for follow-up visits at hospital. This qualitative article elucidates how patients with AL experience the different conditions of the inpatient and outpatient settings and how they reflect on these transitions in order to create meaning in and keep up everyday life. METHODS: Qualitative semi-structured individual interviews twice with each AL patient focusing on the outpatient setting, impact on everyday life, responsibility and the home were performed. Twenty-two patients were interviewed the first time, and 15 of these were interviewed the second time. The data were analyzed in an everyday life relational perspective. RESULTS: Outpatient management facilitates time to be administrated by the patients and thereby the possibility of maintaining everyday life, which was essential to the patients. The privacy ensured by the home was important to patients, and they accepted the necessary responsibility that came with it. However, time spent together with fellow patients and their relatives was an important and highly valued part of their social life. CONCLUSIONS: Approached from the patient perspective, outpatient management provided a motivation for patients as it ensured their presence at home and provided the possibility of taking part in everyday life of the family, despite severe illness and intensive treatment. This may suggest a potential for extending the outpatient management further and also for patient involvement in own care.

A case of standardization? Implementing health promotion guidelines in Denmark.

Guidelines are increasingly used in an effort to standardize and systematize health practices at the local level and to promote evidence-based practice. The implementation of guidelines frequently faces problems, however, and standardization processes may in general have other outcomes than the ones envisioned by the makers of standards. In 2012, the Danish National Health Authorities introduced a set of health promotion guidelines that were meant to guide the decision making and priority setting of Denmark's 98 local governments. The guidelines provided recommendations for health promotion policies and interventions and were structured according to risk factors such as alcohol, smoking and physical activity. This article examines the process of implementation of the new Danish health promotion guidelines. The article is based on qualitative interviews and participant observation, focusing on the professional practices of health promotion officers in four local governments as well as the field of Danish health promotion more generally. The analysis highlights practices and episodes related to the implementation of the guidelines and takes inspiration from Timmermans and Epstein's sociology of standards and standardization. It remains an open question whether or not the guidelines lead to more standardized policies and interventions, but we suggest that the guidelines promote a risk factor-oriented approach as the dominant frame for knowledge, reasoning, decision making and priority setting in health promotion. We describe this process as a case of epistemic standardization.

A palliative environment: Caring for seriously ill hospitalized patients.

OBJECTIVE: To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness. METHOD: A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated. RESULTS: The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions. SIGNIFICANCE OF RESULTS: The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.

Encounters in cancer treatment: intersubjective configurations of a need for rehabilitation.

Based on extensive ethnographic material from in-depth interviews with Danish cancer patients after treatment, this study analyzes their stories to explore how interactions with the physician configures and situates a need for rehabilitation. We identify three themes in the illness stories: (1) attentiveness and care; (2) fragmentation and objectification; and (3) mistrust and dehumanization. These are all closely tied to the concept of recognition, showing how the themes are configured by the social interaction between the patient and the physician and how the need for rehabilitation is shaped by this encounter. The significance of the social encounters in cancer treatment is elucidated through this analysis, and we demonstrate how the need for recognition of the complex effects of cancer on one's life is central to counter experiences of objectification and dehumanization.

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.

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.

Early parental death and risk of hospitalization for affective disorder in adulthood.

BACKGROUND: Early parental death is one of the most stressful childhood life events and may influence subsequent psychological health. We investigated the association between early parental loss and risk of hospitalization for an affective disorder in adulthood. METHODS: Our nationwide register-based cohort study comprises 1,225,660 people born in Denmark in 1970-1990, of whom 138,893 experienced the death of a parent before the age of 30 years. Follow-up for hospitalization for an affective disorder in the period 1990-2009 yielded 15,261,058 person-years and 19,867 hospitalizations for affective disorder (bereaved n = 2,644; nonbereaved n = 17,223). A Cox proportional hazards model was used to assess hazard ratios (HRs) for hospitalization with an affective disorder according to early parental death. RESULTS: People who experienced early parental death had an increased risk of hospitalization for a unipolar disorder (men: HR= 1.33; 95% confidence interval [CI] = 1.23-1.44; women: 1.23; 1.17-1.30). Stronger associations were observed for parental death caused by suicide than for other causes. For bipolar affective disorder, an increased risk of hospitalization was observed only after suicide. CONCLUSIONS: People who had lost a parent had an increased risk of hospitalization for unipolar affective disorder. Although this was particularly true for bereavement due to parental suicide, it was also found for parental death from other causes. In contrast, an increased risk of hospitalization for bipolar affective disorder was observed only after parental suicide.

Healing environments in cancer treatment and care. Relations of space and practice in hematological cancer treatment.

INTRODUCTION: Given the growing attention to the importance of design in shaping healing hospital environments this study extends the understanding of healing environments, beyond causal links between environmental exposure and health outcome by elucidating how environments and practices interrelate. MATERIAL AND METHODS: The study was conducted as an ethnographic fieldwork from March 2011 to September 2011 at the Department of Haematology at Odense University Hospital, Denmark, systematically using participant observation and interviews as research strategies. It included 20 patients, four of who were followed closely over an extended time period. RESULTS: Through thematic analysis five key concepts emerged about the social dynamics of hospital environments: practices of self; creating personal space; social recognition; negotiating space; and ambiguity of space and care. Through these concepts, the study demonstrates how the hospital environment is a flow of relations between space and practice that changes and challenges a structural idea of design and healing. Patients' sense of healing changes with the experience of progression in treatment and the capacity of the hospital space to incite an experience of homeliness and care. Furthermore, cancer patients continuously challenge the use and limits of space by individual objects and practices of privacy and home. DISCUSSION: Healing environments are complex relations between practices, space and care, where recognition of the individual patient's needs, values and experiences is key to developing the environment to support the patient quality of life. The present study holds implications for practice to inform design of future hospital environments for cancer treatment. The study points to the importance for being attentive to the need for flexible spaces in hospitals that recognize the dynamics of healing, by providing individualized care, relating to the particular and changing needs of patients supporting their potential and their challenged condition with the best care possible.

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.

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.

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.