Rethinking the logic of early diagnosis in cancer.

To reduce morbidity and mortality of cancer, more countries have implemented strategies to detect cancer, based on the logic of 'the sooner the better'. Time is thereby an essential component in how cancer research, policies, and prevention are practiced today. Where the logic of early diagnosis benefits some, the logic also produces harms. In this article, we use a cross-disciplinary case-study design to discuss how different notions of time and linearity are essential in today's research ontology of cancer, describe the individual and societal consequences of such ontology, and invite a rethinking of time in cancer. Drawing on theoretical concepts of time together with cancer epidemiological, historical and ethnographical data, we analyse how the logic of early diagnosis has been established as a stable concept. Although evidence supporting the logic points in different directions, the message 'the sooner the better' is currently not being challenged by research, policy or society. This at least partly, can be explained by a linear perception of time and societal traces of neoliberalism and acceleration in our society together with cancer still being a somewhat enigmatic disease that requires acute action. To support a sustainable healthcare sector, we argue there is a need to nuance the logic of early diagnosis. Continuing the linear perception of symptoms and cancer, risks doing more harm than good by making more people patients unnecessarily and by spending health resources on those with the least need.

Local management of the COVID-19 pandemic in Norway: a longitudinal interview study of municipality chief medical officers.

OBJECTIVE: To explore the experiences and views of Norwegian Municipality Chief Medical Officers (MCMOs) on preparedness, collaboration, and organization during the COVID-19 pandemic to gain insight into local crisis management of value for future pandemic responses. DESIGN: Longitudinal qualitative interview study. We conducted semi-structured digital interviews with nine MCMOs working in different municipalities in Norway from September to December 2020. Five MCMOs were re-interviewed from January to April 2021. We used thematic analysis to analyze the data. RESULTS: Through the analysis, three major themes were identified in the material; 1) The view of preparedness changed from being low-priority and dormant to the desire to strengthen preparedness as a permanent measure; 2) The nature of the pandemic forced a change in internal and external communication and collaboration for the MCMOs towards direct dialogue, teamwork and digital networking; 3) The pandemic changed the role and position of the MCMO within the municipal organization. Although most MCMOs were given a leading role in the municipal pandemic response, some MCMOs experienced that they were not positioned to fully exercise their intended role. In our material, de-authorization of the MCMO role seemed to coincide with the increasing size and organizational complexity of the municipality. CONCLUSIONS: The Norwegian pandemic response and outcome have been regarded as successful internationally. Although the MCMOs managed to implement flexible and quick responses facilitated by teamwork, dialogue, and joint sensemaking, they also identified several challenges and shortcomings of the Norwegian pandemic preparedness requiring organizational and financial changes to sustain future health system resilience.

The Norwegian Infection Control Act gave comprehensive responsibility and authority for local COVID-19 pandemic management to the municipalities and the Municipality Chief Medical Officers (MCMOs).The MCMOs highlighted several challenges and shortcomings of the municipal crisis preparedness, of which lack of detailed organizational plans was the most prominent.Teamwork, digital networking and collective sensemaking seemed to enhance pandemic collaboration and resilience within and across municipalities.Most MCMOs gained a leading role at a higher organizational level within the municipality through the COVID-19 pandemic.To strengthen future crisis management, arrangements must be made, both organizationally and financially, for preparedness to remain on the agenda even between epidemics and pandemics.

'There's a will, but not a way': Norwegian GPs' experiences of collaboration with child welfare services - a grounded theory study.

BACKGROUND: Adverse childhood experiences can have immediate effects on a child's wellbeing and health and may also result in disorders and illness in adult life. General practitioners are in a good position to identify and support vulnerable children and parents and to collaborate with other agencies such as child welfare services. There is a need for better integration of relevant services. The aim of this study is to explore GPs' experiences of the collaboration process with child welfare services. METHOD: This is a qualitative grounded theory study, with data consisting of ten semi-structured interviews with general practitioners across Norway. RESULTS: The doctors' main concern was: 'There's a will, but not a way'. Three subordinate stages of the collaboration process were identified: (I) Familiar territory, with a whole-person approach to care by the doctor. (II) Unfamiliar territory, when child welfare becomes involved. Here, a one-way window of information and a closed door to dialogue perpetuate the doctors' lack of knowledge about child welfare services and uncertainty about what is happening to their patients. (III) Fragmented territory, where doctors experience lost opportunities to help and missing pieces in the patient's history. CONCLUSION: General practitioners are willing to contribute to a collaborative process with child welfare, but this is hampered by factors such as poor information flow and opportunities for dialogue, and limited knowledge of the partner. This implies lost opportunities for doctors to help families and contribute their knowledge and potential actions to a child welfare case. It can also impede whole-person care and lead to fragmentation of patient pathways. To counteract this, electronic two-way communication could enable a collaborative process and relationships that enhance coordination between the parties. Making space for all parties and their individual roles was considered important to create a positive collaborative environment.

Managing persistent physical symptoms when being social and active is the norm: a qualitative study among young people in Denmark.

BACKGROUND: An increasing number of young people in Western countries report persistent physical symptoms (PPS). PPS may disturb everyday activities and they may have negative consequences for later adult mental and physical health. Still little is known about how young people handle PPS in their everyday lives. This study examines how young people with PPS attempt to manage their symptoms while staying engaged in their daily activities and what is at stake in these attempts. METHODS: This qualitative study involved semi-structured interviews with 11 young people with PPS. Photo-elicitation was used to capture the participants' experiences as they occurred in their everyday lives. The data material was analysed using a thematic analysis approach, as well as theory on subjectivity and social acceleration. RESULTS: The participants employed alleviating measures and tried to find patterns between their activities and the severity of their symptoms in order to adjust their activity level. Decisions not to participate in social activities were accompanied by feelings of missing out. The participants' attempts at adjusting their activity level was challenged by norms of being social and active, and they experienced difficulty prioritizing their activities and explaining their symptoms to others. CONCLUSION: PPS shaped the participants' sense of how to act towards their bodies and social relationships in interaction with societal norms. The participants' subject formation and symptom experiences should thus be seen as a biosocial process.

Exploring the potential of a standardized test in physiotherapy: making emotion, embodiment, and therapeutic alliance count for women with chronic pelvic pain.

Introduction: There has been an increased use of standardized measurements in health care meant to provide objective information to enhance the quality and effectivity of care. Patient performance tests are based on standardized predefined criteria with a limited focus. When facing multifaceted health conditions, information expanding the predefined criteria in a standardized test may be required to understand the patient's complex symptoms. Relying on test information based on measurements according to functional biology, one risks missing information communicated by the sensitive and expressive body of the individual patient. The aim of this article is to investigate how body, self and illness perception is constituted as a co-construction between a physiotherapist and a patient with complex symptoms, expanding the use of a standard physiotherapy test. Methods: This qualitative study is based on video-recordings and in-depth interviews of seven women with the complex health condition chronic pelvic pain. The video recordings consist of the patients performing the Standard Mensendieck test pre- and post-treatment with Norwegian psychomotor physiotherapy. The interviews are based on the patients` and the physiotherapists` conversations while watching and elaborating on these video recordings. Empirical data is analyzed within the theoretical perspectives of phenomenology and enactive theory, especially focusing on the concepts of embodiment and intersubjectivity. Results: Taking an embodied approach, considering the body as expressive, communicative, and vulnerable to the environment and context, the results show that through bodily expressions the patients experienced the test situation as demanding, thus providing information beyond what the test was intended to measure. Additionally, when administering a standardized test, the interaction between the therapist and the patient had an impact on the results. Sensitive attention towards the patients bodily expressive emotions as a vital part of the interaction, reinforced therapeutic alliance by ensuring the integrity and autonomy of the patient. Discussion: Mutual communication, gave new insights regarding the patients' complex symptoms and reinforced their belief in themselves and their recovery processes. Applying the patient's expertise on herself and her life together with the professional expertise may make health care an interdependent practice where sensemaking is a co-construction of meaning between the patient and the health personnel.

How life events are perceived to link to bodily distress: A qualitative study of women with chronic pelvic pain.

Chronic pelvic pain (CPP) is highly prevalent among women and the condition is poorly understood. In addition to multiple symptoms from the pelvis, CPP patients frequently suffer bodily distress like musculoskeletal pain and negative emotional, behavioral, and sexual implications. This paper is based on a qualitative study including semi-structured interviews with eight women with CPP. Our project has been conducted within the framework of phenomenology, particularly shaped by the concept of embodiment. We discuss the link between the lived body and CPP and address the value of making the life experiences of the patient relevant to understand this complex condition.

Experiences and management strategies of Norwegian GPs during the COVID-19 pandemic: a longitudinal interview study.

OBJECTIVE: When the COVID-19 pandemic reached Norway, primary health care had to reorganize to ensure safe patient treatment and maintain infection control. General practitioners (GPs) are key health care providers in the municipalities. Our aim was to explore the experiences and management strategies of Norwegian GPs during the COVID-19 pandemic - over time, and in the context of a sudden organizational change. DESIGN: Longitudinal qualitative interview study with two interview rounds. The first round of interviews was conducted from September-December 2020, the second round from January-April 2021. In the first interview round, we performed eight semi-structured interviews with GPs from eight municipalities in Norway. In the second round, five of the GPs were re-interviewed. Consecutive interviews were performed 2-4 months apart. To analyze the data, we used thematic analysis. RESULTS: The COVID-19 pandemic required GPs to balance several concerns, such as continuity of care and their own professional efforts. Several GPs experienced challenges in the collaboration with the municipality and in relation to defining their own professional position. Guided by The Norwegian Association of General practitioners, The Norwegian College of General Practice and collegial support, they found viable solutions and ended up with a feeling of having adapted to a new normal. CONCLUSIONS: Although our study demonstrates that the GPs adapted to the changing conditions, the current municipal health care models are not ideal. There is a need for clarification of responsibilities between GPs and the municipality to facilitate a more coordinated future pandemic response.Key PointsFacing the COVID-19 pandemic, the primary health care service in Norway had to reorganize to ensure safe patient treatment and maintain infection control.Several GPs experienced challenges in collaboration with the municipalities.There is a need for clarification of responsibilities between GPs and the municipality.

Senses of Touch: The Absence and Presence of Touch in Health Care Encounters of Patients with Mental Illness.

Touch is a fundamental sense and the most unexplored of the five senses, despite its significance for everything we do in relation to ourselves and others. Studies have shown that touch generates trust, care and comfort and is essential for constituting the body. Based on ethnographic fieldwork, this study explores the absence and presence of touch in interactions between people with mental illness and professionals, in health care encounters with general practitioners, neurologists and physiotherapists, as well as masseurs. We found that touch and physical examination of patients with mental illness is absent in health care encounters, leaving the patients with feelings of being out of place, misunderstood, less socially approved and less worthy of trust. Drawing on Honneth and Guenther, we conclude that touch and being touched is an essential dimension of recognition-both of the patients' bodily sensations and symptoms and of them as human beings, detached from the psychiatric label-as well as contributing to the constitution of self and personhood. These findings confirm that touch works as an existential hinge that affirms a connection between the patient, the body and others and gives a sense of time, space and existence.

Luckily-I am not the worrying kind: Experiences of patients in the Danish cancer patient pathway for non-specific symptoms and signs of cancer.

In Denmark, due to the implementation of the Non-specific Symptoms and Signs of Cancer-Cancer Patient Pathway (NSSC-CPP), more people with symptoms such as fatigue and weight loss are informed that their symptoms might indicate cancer and they are referred to the pathway. But what do patients in the NSSC-CPP experience, in particular, with respect to being in an affective state of anticipation of a cancer diagnosis? We conducted participant observation and semi-structured interviews with patients to investigate their experience of the NSSC-CPP with a specific focus on their perception of symptoms and their thoughts on worrying about cancer. We found that the phrase 'worried about cancer' was not recognised by the participants, but worry was visible in their increased healthcare use and their interpretation of bodily sensations. Our study indicates the need to explore the impact of anticipation and potential cancer worries in participants' everyday lives, as this context mediates their moral roles and responsibilities and restructures their social lives, while keeping uncertainty and probabilities on the table.

Responsibilities of Risk: Living with Mental Illness During COVID-19.

Following the COVID-19 pandemic, Denmark introduced repeated lock-downs of society, including outreach services and visits from social workers for people living with mental illnesses. Based on ethnographic fieldwork, in this article we explore how people with mental illness react to and manage their lives amid COVID-19 mitigations, focusing on how they experience and negotiate vulnerability at personal and community level. We argue, that the subjective management of restrictions implicated in their personal lives notions of risk, vulnerability and agency, and shows a diversity and heterogeneity of responses to the pandemic that allowed the mentally ill to perform good citizenship.

Caught up in Care: Crafting Moral Subjects of Chronic Fatigue.

Patients with chronic fatigue receive advice to improve symptom management and well-being. This advice is based on ideas of self-management and is conveyed during clinical assessment as "activity regulation." Based on ethnographic fieldwork in a hospital clinic in Norway, we show how these patients attempt to demonstrate their competences and everyday concerns, and how the ideology of self-management frames the hope for recovery and crafts a subject with the ability to improve. Patients, however, linger between everyday social predicaments and ideals of healthy living, and are caught up in cultural models of care that deflect everyday concerns and agency.

'Fixing my life': young people's everyday efforts towards recovery from persistent bodily complaints.

Little is known about the perspectives of young people suffering from medically unexplained symptoms. This study aims to explore the experiences and strategies of young Norwegians related to incipient and persistent health complaints affecting everyday life functioning. The study draws on field notes, video material and interview transcripts from a multi-sited ethnographic study of healthcare services and select schools in a small Norwegian town between 2015 and 2016. A central theme is the emphasis upon social and existential constraints seemingly framed by a social imaginary of youth rather than a medical imaginary, and their active engagements to 'fix' their lives through what we identify as two main modalities of self-care. Navigating temporal and relational aspects of sociocultural configurations of youth in their social environments, they imagine and enact alternative qualifying positions better adapted to constraints, personal preferences and needs. Our findings may add to understandings of the needs and strategies of young sufferers of medically unexplained symptoms, relevant for health and social care encounters.

'Not a film about my slackness': Making sense of medically unexplained illness in youth using collaborative visual methods.

Persistent medically unexplained symptoms have debilitating consequences for adolescents, dramatically altering their social world and future aspirations. Few studies have focused on social and moral aspects of illness experience relevant to adolescents. In this study, the aim is to explore these aspects in depth by focusing on a single case and to address how young people attempt to create social accountability in a search for meaning when facing illness and adversity. The study is based on a view of meaning as dialogically constituted during the research process, which calls for the use of collaborative film methodology and life-mode interviewing. With a dialogic-performative approach to a narrative emplotment of medically unexplained symptoms, we present Peter as intentional and purposive, and as a person who in a reflective process of meaning making claimed his own voice and developed his own strategies of coping with his illness. The analysis brings forward a narrative of suffering, hope and intentionality that is configured by the immediate limited possibilities of agency due to Peter's medical condition. It is, however, configured to an even greater degree by aspirations, that is, to become an accountable person through social experiences and to meet sociocultural and moral expectations of being an adolescent. The study provides insight into relational and existential aspects of meaning making in dealing with contested illness in youth and points to the potential of visual and other experience-near methods for supporting adolescents in their coping attempts and in overcoming communication barriers in everyday life and clinical encounters.

Illness perceptions of youths with functional disorders and their parents: An interpretative phenomenological analysis study.

BACKGROUND: Functional disorders, defined as disorders with no clear medical explanation, are common and impose a significant burden on youths, their families, healthcare services and society as a whole. Currently, the literature describes resistance among patients and their families towards psychological symptom explanations and treatments. More knowledge about the thoughts and understandings of youths with functional disorders and their parents is needed. The aim of this study was to explore the illness perceptions of youths with severe functional disorders and their parents. METHODS: A qualitative interview study using interpretative phenomenological analyses. The study included 11 youths aged 11-15 years with functional disorders and their parents, where interviews were performed at the point of referral from a somatic to a psychiatric treatment setting. RESULTS: Analyses identified three main themes. Themes 1(Ascribing identity to the disorder) and 2 (Monocausal explanations) explore key elements of the participants' illness perceptions, and theme 3 (Mutable illness perceptions) explores how illness perceptions are influenced by experiences from healthcare encounters. CONCLUSIONS: The label 'functional disorder' was poorly integrated in the illness perceptions of the youths and their parents. Participants used a monocausal and typically physical explanation rather than a multicausal biopsychosocial explanation for their symptoms.

'I can hardly breathe': Exploring the parental experience of having a child with a functional disorder.

Functional disorders in children and adolescents are common. Still, little is known about parents' experience of having a child with a functional disorder. The aim of this qualitative interview study was to explore challenges encountered by parents caring for a child undergoing treatment for functional disorder. Sixteen parents to children with functional disorders were interviewed when their child was referred from a paediatric department for further specialized treatment with family therapy in child and adolescent mental health services. Analysis identified three themes, reflecting the parental experiences: parents in limbo, which described how limited knowledge about functional disorders among professionals in non-specialized settings influenced parental roles; a counterintuitive kind of caring, describing parental struggles with adhering to treatment recommendations for functional disorders; and challenges to parental identity, describing parental emotional challenges. These challenges may bar the acceptance of psychological treatment approaches in families with a child with functional disorders.

The cancer may come back: experiencing and managing worries of relapse in a North Norwegian village after treatment.

Little is known about how people living in the aftermath of cancer treatment experience and manage worries about possible signs of cancer relapse, not as an individual enterprise but as socially embedded management. One-year ethnographic fieldwork was conducted in a coastal village of under 3000 inhabitants in northern Norway. Ten villagers who had undergone cancer treatment from six months to five years earlier were the main informants. During fieldwork, the first author conducted qualitative, semi-structured monthly interviews with them, and participated in their everyday activities and relationships, including families, friends and co-villagers. In this article, we contemplate human emotions as arising in contexts of transactions, capable of creating social realities. By including this perspective, we highlight how people who recover from cancer construct and experience worry about possible relapse in relation to close family members, friends and co-villagers in the socially closely-knit and relatively isolated village. These emotional experiences emerge through relationships with others have communicative characteristics and take place in interaction with the social environment of their village. While informants attempt to protect family members by avoiding sharing worries with them, they express the need to share their worries within friendships. However, they experience both comfort and challenges in managing their worries in relation to acquaintances in the village. Overall, the study enhances understanding of the social embeddedness of emotions in everyday life, by revealing how worries of relapse of cancer configure and relate to various social contexts.

Epistemological and methodological paradoxes: secondary care specialists and their challenges working with adolescents with medically unexplained symptoms.

BACKGROUND: Early adolescence is considered a critical period for the development of chronic and recurrent medically unexplained symptoms (MUS), and referrals and system-initiated patient trajectories often lead to an excess of examinations and hospitalizations in the cross-section between mental and somatic specialist care for this group of patients. Dimensions of the relationship and communication between clinician and patient are shown in primary care studies to be decisive for subsequent illness pathways, often creating adverse effects, but knowledge on clinical communication in specialist care is still scarce. METHODS: This study explores communicative challenges specific to clinical encounters between health professionals and adolescent patients in specialist care, as presented through interviews and focus group data with highly experienced specialists working in adolescent and child services at a Norwegian university hospital. RESULTS: The results are presented in a conceptual model describing the epistemological and methodological paradoxes inherent in the clinical uncertainty of MUS. Within these paradoxes, the professionals try to solve the dilemmas by being creative in their communication strategies; applying metaphors and other rhetorical devices to explain complex ideas; creating clinical prototypes as a way to explain symptoms and guide them in clinical action; relying on principles from patient-centered care involving empathy; and trying to balance expertise and humility. CONCLUSION: The challenges in communication arise as a result of opposing discourses on biomedicine, family, health and adolescence that create dilemmas in everyday clinical work. By moving away from a positivist and biomedical framework towards an interpretive paradigm, where culturally derived and historically situated interpretations are used to understand the social life-world of the patient, one can create a more humane health service in accordance with ideals of patient-centered care.

Self-treatment of acute exacerbations of chronic obstructive pulmonary disease requires more than symptom recognition - a qualitative study of COPD patients' perspectives on self-treatment.

BACKGROUND: Self-treatment of acute exacerbations of COPD with antibiotics and/or oral corticosteroids has emerged as a promising strategy to reduce hospitalization rates, mortality and health costs. However, for reasons little understood, the effect of self-treatment, particularly when not part of comprehensive self-management programs, remains unclear. Therefore, this study aims to get insight into the patients' perspective on self-treatment of acute exacerbations of COPD, focusing specifically on how patients decide for the right moment to start treatment with antibiotics and/or oral corticosteroids, what they consider important when making this decision and aspects which might interfere with successful implementation. METHODS: We interviewed 19 patients with chronic obstructive pulmonary disease using qualitative semi-structured interviews, and applied thematic analysis for data analysis. RESULTS: Patients were well equipped with experiential knowledge to recognize and promptly respond to worsening COPD symptoms. Worries regarding potential adverse effects of antibiotics and oral corticosteroids played an important role in the decision to start treatment and could result in hesitation to start treatment. Although self-treatment represented a practical and appreciated option for some patients with predictable symptom patterns and treatment effect, all patients favoured assistance from a medical professional when their perceived competence reached its limits. However, a feeling of obligation to succeed with self-treatment or distrust in their doctors or the health care system could keep patients from timely help seeking. CONCLUSION: COPD patients regard self-treatment of exacerbations with antibiotics and/or oral corticosteroids as a valuable alternative. How they engage in self-treatment depends on their concerns regarding the medications' adverse effects as well as on their understanding of and preferences for self-treatment as a means of health care. Caregivers should address these perspectives in a collaborative approach when offering COPD patients the opportunity for self-treatment of exacerbations.

Resisting "Reason": A Comparative Anthropological Study of Social Differences and Resistance toward Health Promotion and Illness Prevention in Denmark.

Social differences in health and illness are well documented in Denmark. However, little is known about how health practices are manifested in the everyday lives of different social classes. We propose acts of resistance and formation of health subjectivities as helpful concepts to develop our understanding of how dominant health discourses are appropriated by different social classes and transformed into different practices promoting health and preventing illness. Based on fieldwork in two different social classes, we discuss how these practices both overtly and subtly challenge the normative power of the health promotion discourse. These diverse and ambiguous forms of everyday resistance illustrate how and when situated concerns move social actors to subjectively appropriate health promotion messages. Overall, the different forms of resistance elucidate how the standardized awareness and education campaigns may perpetuate the very inequalities they try to diminish.

What is the problem with medically unexplained symptoms for GPs? A meta-synthesis of qualitative studies.

OBJECTIVE: To gain a deeper understanding of challenges faced by GPs when managing patients with MUS. METHODS: We used meta-ethnography to synthesize qualitative studies on GPs' perception and management of MUS. RESULTS: The problem with MUS for GPs is the epistemological incongruence between dominant disease models and the reality of meeting patients suffering from persistent illness. GPs have used flexible approaches to manage the situation, yet patients and doctors have had parallel negative experiences of being stuck, untrustworthy and helpless. In the face of cognitive incongruence, GPs have strived to achieve relational congruence with their patients. This has led to parallel positive experiences of mutual trust and validation. With more experience, some GPs seem to overcome the incongruences, and later studies point towards a reframing of the MUS problem. CONCLUSION: For GPs, the challenge with MUS is most importantly at an epistemological level. Hence, a full reframing of the problem of MUS for GPs (and for patients) implies broad changes in basic medical knowledge and education. PRACTICE IMPLICATIONS: Short-term: Improve management of patients with MUS by transferring experience-based, reality-adjusted knowledge from senior GPs to juniors. Long-term: Work towards new models of disease that integrate knowledge from all relevant disciplines.