Informal caregiving is increasingly considered a health care delivery-resource within the North European welfare states. While ‘informal’ often refers to non-professional, ‘caregiving’ connotes both affective concern (caring about) and practical action (caring for). This duality of meanings, however, often refers to the one direction in which care is given. Care, we suggest, is relational and also requires that people receiving care are able to or wanting to share their needs. Informal caregiving thus requires sharing. Based on 155 semi-structured, narrative interviews with people with lung or bowel cancer, living in Denmark, Sweden or England, this paper explores how and with whom people ‘share’ when they fall ill. We approach sharing as a heuristic for reflecting on informal-caregiving, and illustrate how being cared for or asking for care are entangled with the management of social risks and notions of selfhood. We conclude that informal caregiving should explicitly be recognised as morally and sympathetically committed practices, which attend to the diversity of local moral worlds of patients, their needs and experiences.

In astrophysics, the 'Goldilocks Zone' describes the circumstellar habitable zone, in which planets, sufficiently similar to Earth, could support human life. The children's story of Goldilocks and the Three Bears, one of the most popular fairy tales in the English language, uses this metaphor to describe conditions for life that are neither too hot nor too cold and neither too close to the sun nor too far from its warmth. We propose that the 'Goldilocks Zone' also offers an apt metaphor for the struggle that people face when deciding if and when to consult a health care provider with a possible health problem. Drawing on decades of research in Denmark, England and Sweden on people's accounts of their experiences of accessing health care, this essay considers the ambivalence of health care seeking that individuals face in identifying when it is 'just right' to consult a general practitioner and the steps that health systems and individual clinicians might take to widen the zone.

Background: Most people in modern societies now use the Internet to obtain health-related information. By giving patients knowledge, digital health information is considered to increase patient involvement and patient-centered interactions in health care. However, concerns are raised about the varying quality of health-related websites and low health literacy in the population. There is a gap in the current knowledge of nurses’ experiences with Internet-informed patients.

Objective: The objective of this study was to explore primary health care nurses’ experiences of consultations with patients who present health-related information from the Internet.

Methods: This is a qualitative study based on interviews with 9 primary health care nurses. Data were analyzed using qualitative content analysis. Results are reported according to the consolidated criteria for reporting qualitative research guidelines.

Results: The phenomenon of Internet-informed patients was considered to change the usual rules in health care, affecting attributes and actions of patients, patterns of interactions in consultations, and roles of nurses and patients. Three categories were identified: (1) Facing the downsides of Googling, (2) Patients as main actors, and (3) Nurse role challenged. Although the benefits of health-related Internet information were described, its negative consequences were emphasized overall. The problems were mainly ascribed to inaccurate Internet information and patients’ inability to effectively manage the information.

Conclusions: Our study suggests ambivalent attitudes among nurses toward health-related Internet information. In order to promote equitable care in the digital era, increased awareness in health care about useful strategies for overcoming the difficulties and embracing the benefits of conferring with Internet-informed patients seems to be a legitimate goal.

AIMS AND OBJECTIVES: To explore patients' experiences of contact and interaction with healthcare professionals (HCPs) during the diagnostic process of melanoma.

BACKGROUND: In Sweden, most patients with suspected skin lesions seek care at the primary level of services in the first instance. Previous research describes the diagnostic process as a complex journey with uncertainty. Nonetheless, the importance of contact and interaction between patient and HCPs during the diagnostic process is rarely explored.

DESIGN: This study adopted a qualitative design in which semi-structured interviews were conducted and the COREQ-checklist for qualitative studies employed (EQUATOR guidelines).

METHODS: A sample of 30 patients (15 women, 15 men) diagnosed with melanoma was included. Secondary analysis of interviews was carried out using qualitative content analysis.

RESULTS: One theme emerged: Wishing to be perceived as a capable and resourceful person that consisted of three categories: (a) The need of being valued, (b) The need of being informed and (c) The need of taking actions.

CONCLUSIONS: Our results suggest that patients wish to be valued as capable and resourceful persons as well as to be provided with honest and sufficient information about the diagnosis and subsequent procedures. By fulfilling these wishes, HCPs can involve patients in the diagnostic process and reduce patients' uncertainty. A need of supportive and accessible health care to manage the diagnostic process and to reduce patients' struggle for care was also identified.

RELEVANCE TO THE CLINICAL PRACTICE: Patients are satisfied when health care is organised in a patient-/person-centred manner, that is, in accordance with patients' needs, avoiding gatekeeping, and when HCPs interact respectfully in encounters. Accessible HCPs during the diagnostic process of melanoma are required to inform, support and navigate patients within the healthcare system and through their diagnostic journey.

Purpose: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden.

Method: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach.

Results: Participants’ accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow.

Conclusions: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.

BACKGROUND: Understanding what influences people to seek help can inform interventions to promote earlier diagnosis of cancer, and ultimately better cancer survival. We aimed to examine relationships between negative cancer beliefs, recognition of cancer symptoms and how long people think they would take to go to the doctor with possible cancer symptoms (anticipated patient intervals).

METHODS: Telephone interviews of 20,814 individuals (50+) in the United Kingdom, Australia, Canada, Denmark, Norway and Sweden were carried out using the Awareness and Beliefs about Cancer Measure (ABC). ABC included items on cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking for cough and rectal bleeding. The anticipated time to help-seeking was dichotomised as over one month for persistent cough and over one week for rectal bleeding.

RESULTS: Not recognising persistent cough/hoarseness and unexplained bleeding as cancer symptoms increased the likelihood of a longer anticipated patient interval for persistent cough (OR = 1.66; 95%CI = 1.47-1.87) and rectal bleeding (OR = 1.90; 95%CI = 1.58-2.30), respectively. Endorsing four or more out of six negative beliefs about cancer increased the likelihood of longer anticipated patient intervals for persistent cough and rectal bleeding (OR = 2.18; 95%CI = 1.71-2.78 and OR = 1.97; 95%CI = 1.51-2.57). Many negative beliefs about cancer moderated the relationship between not recognising unexplained bleeding as a cancer symptom and longer anticipated patient interval for rectal bleeding (p = 0.005).

CONCLUSIONS: Intervention studies should address both negative beliefs about cancer and knowledge of symptoms to optimise the effect.

OBJECTIVES: To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help-seeking.

DESIGN: A qualitative cross-country comparison with analysis of narrative interviews.

SETTING: Participants in Sweden, Denmark and England were interviewed during 2015-2016. Interviews, using a narrative approach, were conducted in participants' home by trained and experienced qualitative researchers.

PARTICIPANTS: Seventy-two men and women diagnosed with lung cancer were interviewed within 6 months of their diagnosis.

RESULTS: The English participants, regardless of their own smoking status, typically raised the topic of smoking early in their interviews. Smoking was mentioned in relation to symptom appraisal and interactions with others, including health professionals. Participants in all three countries interpreted their symptoms in relation to their smoking status, but in Sweden (unlike England) there was no suggestion that this deterred them from seeking care. English participants, but not Swedish or Danish, recounted reluctance to consult healthcare professionals with their symptoms while they were still smoking, some gave up shortly before consulting. Some English patients described defensive strategies to challenge stigma or pre-empt other people's assumptions about their culpability for the disease. A quarter of the Danish and 40% of the Swedish participants did not raise the topic of smoking at any point in their interview.

CONCLUSION: The causal relationship between smoking and lung cancer is well known in all three countries, yet this comparative analysis suggests that the links between a sense of responsibility, stigma and reluctance to consult are not inevitable. These findings help illuminate why English patients with lung cancer tend to be diagnosed at a later stage than their Swedish counterparts.

AIM: The aim of this study was to describe Norwegian healthcare staffs' experiences of participating in care of patients with Ebola virus disease in Sierra Leone.

BACKGROUND: Ebola is one of the most feared viruses known. Ebola virus disease is highly contagious with high mortality. The few qualitative studies made on experiences among healthcare professionals have highlighted problems as lack of protective resources, insufficient personnel and risk of societal stigmatization.

DESIGN: Descriptive study with qualitative approach.

METHOD: Individual narrative and focus group interviews were obtained during 2015 with eight nurses and one physician who had worked in Ebola care in Sierra Leone. The interviews were analysed using qualitative content analysis.

RESULT: The analysis resulted in the two themes: 'Experiencing security by learning to manage risks'; and 'Developing courage and growth by facing personal fears'. Subthemes were: 'Relying on safeguard actions', 'Managing risk of contagion', 'Developing strategies for care despite risks', 'Constantly reminded of death', 'Successively defeating fears' and last, 'Increasing motivation through meaningfulness'. The participants described the reliance on training, organized effort, strict guidelines and equipment. They were respectful of the risk of transmission, made risk assessments, took responsibility, handled risky situations and were reminded of suffering and death.

CONCLUSION: Despite challenges, the hazardous work with Ebola virus disease patients was experienced as meaningful which was an important motivator. Safe care was central in working with Ebola patients, but the care relation was challenged.

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms.

Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer.

Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview.

Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes.

Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden.

Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Background Recent epidemiologic data show that Denmark has considerably poorer survival from common cancers than Sweden. This may be related to a lower awareness of cancer symptoms and longer patient intervals in Denmark than in Sweden. The aims of this study were to: 1) compare population awareness of three possible symptoms of cancer (unexplained lump or swelling, unexplained bleeding and persistent cough or hoarseness); 2) compare anticipated patient interval when noticing any breast changes, rectal bleeding and persistent cough; and 3) examine whether potential differences were noticeable in particular age groups or at particular levels of education in a Danish and Swedish population sample.

Method Data were derived from Module 2 of the International Cancer Benchmarking Partnership. Telephone interviews using the Awareness and Beliefs about Cancer measure were conducted in 2011 among 3000 adults in Denmark and 3070 adults in Sweden.

Results Danish respondents reported a higher awareness of two of three symptoms (i.e. unexplained lump or swelling and persistent cough or hoarseness) and a shorter anticipated patient interval for two of three symptoms studied (i.e. any breast changes and rectal bleeding) than Swedish respondents. Differences in symptom awareness and anticipated patient interval between these countries were most pronounced in highly educated respondents.

Conclusion Somewhat paradoxically, the highest awareness of symptoms of cancer and the shortest anticipated patient intervals were found in Denmark, where cancer survival is lower than in Sweden. Thus, it appears that these differences in symptom awareness and anticipated patient interval do not help explain the cancer survival disparity between Denmark and Sweden.