Dying at "home" - a qualitative study of end-of-life care in rural Northern Norway from the perspective of health care professionals.

BACKGROUND: 'Most patients want to die at home' is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals' experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway. METHODS: This is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically. RESULTS: Health care professionals did their utmost to fulfil patients' wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers' important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include 'home place' in the form of local health care facilities. CONCLUSIONS: Providing palliative care in patients' homes is professionally and ethically challenging, and health care professionals' dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses' pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.

"I base my life on sadness": Apparently paradoxical sources of resilience among young Haitians.

Haitian expressions of resilience also hold deep knowledge of human vulnerability. This longitudinal, qualitative study with young Haitians from urban shantytowns combines ethnographic and participatory methods to explore the complexities behind such idioms. Artistic and creative products made by or with the youth facilitated interviews, focus group discussions, and workshops. Through the life stories of participants and rich ethnographic material, this study presents locally situated idioms of resilience (and distress). By including local social ecology, the idioms were framed as historically and culturally rooted, thus shaping contextual, pragmatic, and gendered coping strategies grounded in embodied experiences of vulnerability and resistance. The study adds essential insights into Haitian resilience, revealing the local logics behind seemingly paradoxical statements. By drafting a conceptual framework for further studies on idioms of resilience, the study also makes a theoretical contribution to international resilience research.

Variation in suspected cancer referral pathways in primary care: comparative analysis across the International Benchmarking Cancer Partnership.

BACKGROUND: International variations in cancer outcomes persist and may be influenced by differences in the accessibility and organisation of cancer patient pathways. More evidence is needed to understand to what extent variations in the structure of primary care referral pathways for cancer investigation contribute to differences in the timeliness of diagnoses and cancer outcomes in different countries. AIM: To explore the variation in primary care referral pathways for the management of suspected cancer across different countries. DESIGN AND SETTING: Descriptive comparative analysis using mixed methods across the International Cancer Benchmarking Partnership (ICBP) countries. METHOD: Schematics of primary care referral pathways were developed across 10 ICBP jurisdictions. The schematics were initially developed using the Aarhus statement (a resource providing greater insight and precision into early cancer diagnosis research) and were further supplemented with expert insights through consulting leading experts in primary care and cancer, existing ICBP data, a focused review of existing evidence on the management of suspected cancer, published primary care cancer guidelines, and evaluations of referral tools and initiatives in primary care. RESULTS: Referral pathway schematics for 10 ICBP jurisdictions were presented alongside a descriptive comparison of the organisation of primary care management of suspected cancer. Several key areas of variation across countries were identified: inflexibility of referral pathways, lack of a managed route for non-specific symptoms, primary care practitioner decision-making autonomy, direct access to investigations, and use of emergency routes. CONCLUSION: Analysing the differences in referral processes can prompt further research to better understand the impact of variation on the timeliness of diagnoses and cancer outcomes. Studying these schematics in local contexts may help to identify opportunities to improve care and facilitate discussions on what may constitute best referral practice.

Personal continuity of GP care and outpatient specialist visits in people with type 2 diabetes: A cross-sectional survey.

BACKGROUND: Continuity of care is particularly important for patients with chronic conditions, such as type 2 diabetes (T2D). Continuity is shown to reduce overall health service utilization among people with diabetes, however, evidence about how it relates to the utilization of outpatient specialist services in Norway is lacking. The aim of this study was to investigate continuity of GP care for people with T2D, and its association with the use of outpatient specialist health care services. METHODS: We used e-mail questionnaire data obtained from members of The Norwegian Diabetes Association in 2018. Eligible for analyses were 494 respondents with T2D and at least one GP visit during the previous year. By descriptive statistics and logistic regressions, we studied usual provider continuity (UPC) and duration of the patient-GP relationship and associations of these measures with somatic outpatient specialist visits. Analyses were adjusted for gender, age, education, self-rated health, and diabetes duration. RESULTS: Mean age was 62.6 years and mean UPC was 0.85 (CI 0.83-0.87). Two thirds of the sample (66.0%) had made all visits to the regular GP during the previous year (full continuity). Among these, 48.1% had made one or more specialist visits during the previous year, compared to 65.2% among those without full continuity. The probability of outpatient specialist visits was significantly lower among participants with full continuity, compared to those without full continuity (Odds Ratio 0.53, Confidence Interval 0.35-0.80). The probability of visiting outpatient specialist services was not associated with duration of the patient-GP relationship. CONCLUSIONS: We conclude that continuity of care, as measured by Usual Provider Continuity, is high and associated with reduced use of somatic outpatient specialist services in people with T2D in Norway. Continuity and its benefits will become increasingly important as the number of older people with diabetes and other chronic diseases increases.

Talking together in rural palliative care: a qualitative study of interprofessional collaboration in Norway.

BACKGROUND: Caring for people with palliative care needs in their homes requires close collaboration within and between primary and hospital care. However, such close collaboration is often lacking. Transitions of care are potentially unsafe and distressing points in a patient trajectory. Few studies have explored the experiences of healthcare professionals in the community who receive patients from hospital care and provide them with palliative care at home. OBJECTIVE: To explore how rural health professionals experience local and regional collaboration on patients in need of palliative care. METHODS: This was a qualitative focus group and interview study in rural Northern Norway involving 52 primary care health professionals including district nurses, general practitioners, oncology nurses, physiotherapists, and occupational therapists. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically. RESULTS: "Talking together" was perceived as the optimal form of collaboration, both within primary care and with specialists. Nurses and GPs had similar perceptions of their worst-case scenario in primary palliative care: the sudden arrival after working hours of a sick patient about whom they lacked information. These situations could be the result of a short notice transfer from secondary care or an emergency presentation after a crisis in patient management locally, the latter often resulting in a hospital admission. Participants missed timely and detailed discharge letters and in complex cases a telephone call or conference. Locally, co-location was perceived as advantageous for crucial communication, mutual support, and knowledge about each other's competencies and work schedule. Because local health professionals belonged to different units within the primary health care organisation, in some places they had limited knowledge about each other's roles and skill sets. CONCLUSIONS: Lack of communication, both locally and between specialist and primary care, was a key factor in the worst-case patient scenarios for GPs and nurses working in primary palliative care in rural Northern Norway. Co-location of primary care professionals promoted local collaboration and should be encouraged. Hospital discharge planning should involve the receiving primary care professionals.

Identity construction in medical student stories about experiences of disgust in early nursing home placements: a dialogical narrative analysis.

OBJECTIVES: To explore medical students' reflective essays about encounters with residents during preclinical nursing home placements. DESIGN: Dialogical narrative analysis aiming at how students characterise residents and construct identities in relation to them. SETTING: Medical students' professional identity construction through storytelling has been demonstrated in contexts including hospitals and nursing homes. Some preclinical students participate in nursing home placements, caring for residents, many living with dementia. Students' interactions with these residents can expose them to uncontained body fluids or disturbing behaviour, evoking feelings of disgust or fear. PARTICIPANTS: Reflective essays about experiences as caregivers in nursing homes submitted to a writing competition by preclinical medical students in New Zealand. RESULTS: Describing early encounters, students characterised residents as passive or alien, and themselves as vulnerable and dependent. After providing care for residents, they identified them as individuals and themselves as responsible caregivers. However, in stories of later encounters that evoked disgust, some students again identified themselves as overwhelmed and vulnerable, and residents as problems or passive objects. We used Kristeva's concept of abjection to explore this phenomenon and its relationship with identity construction. CONCLUSIONS: Providing personal care can help students identify residents as individuals and themselves as responsible caregivers. Experiencing disgust in response to corporeal or psychic boundary violations can lead to abjection and loss of empathy. Awareness of this possibility may increase students' capacity to treat people with dignity and compassion, even when they evoke fear or disgust. Medical education theory and practice should acknowledge and address the potential impact of strong negative emotions experienced by medical students during clinical encounters.

Agenda navigation in consultations covering multiple topics. A qualitative case study from general practice.

OBJECTIVE: To explore how agenda navigation may be accomplished underway in consultations covering multiple topics, we identified and analyzed one GP's communicative strategies. DESIGN, SETTING, AND SUBJECTS: A qualitative observational case study with linguistic microanalysis of an exemplary consultation between a female patient with diabetes and her male GP. We used speech act theory to identify communicative actions that indicated agenda navigation by the GP in transitions between episodes concerning ten topics. RESULTS: Microanalysis revealed different aspects of agenda navigation by the GP using speech acts, especially ways of opening or closing an episode. The opening of episodes was characterized by speech acts accepting the patient's request to discuss a topic, mostly at the beginning of the consultation. Speech acts to inform or to request information from the patient dominated later in the consultation. The GP closed all episodes using speech acts to instruct or appraise the patient, or to make agreements and plans. CONCLUSION AND PRACTICE IMPLICATIONS: Skilful agenda navigation is an important tool for consultations covering multiple issues and could be further developed for medical education. The opening and closing of episodes were vital communicative strategies supporting patient-centered communication in a complex consultation while maintaining the focus of the consultation agenda.KEY POINTSWhile traditional consultation models cover one health problem, GP consultations often include many patient issues in each session.Linguistic microanalysis of speech acts helped to identify communication strategies in a GP consultation with multiple topics.The GP conducted agenda navigation by distinctly opening and closing episodes concerning specific topics.Episodes were opened by accepting, informing, and requesting and closed by instruction, appraisal, making agreements, or plans.

Adapting and Going the Extra Mile: A Qualitative Study of Palliative Care in Rural Northern Norway From the Perspective of Healthcare Providers.

BACKGROUND: Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway. OBJECTIVE: The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas. METHODS: A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically. RESULTS: We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations. CONCLUSIONS: Palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential. IMPLICATIONS FOR PRACTICE: Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.

Experience-based learning: junior medical students' reflections on end-of-life care.

CONTEXT: Experience-based learning may contribute to confidence, competence and professional identity; early experiences may be particularly formative. This study explored how pre-clinical students make sense of their participation in the provision of end-of-life care within community settings. METHODS: We performed dialogic narrative analysis on essays written by junior medical students in New Zealand. Students had reflected on their participation as assistant caregivers in nursing homes, contributing to the personal care of the elderly residents who lived there. Essays had been submitted to a reflective writing competition that was run separately from the students' medical studies. We analysed five essays about nursing placements, focusing on students' stories about their engagement with residents who were suffering or were receiving end-of-life care. RESULTS: In their essays, students wrote about powerful and at times intense learning experiences during these early clinical attachments; their attitudes to death and dying were both highlighted and changed. Allied health professionals (e.g. caregivers) provided important support for student learning, especially in relation to seminal encounters such as those occurring in the course of providing end-of-life care. Support increased students' participation and confidence. Reflective writing helped students make sense of their learning and led them to think about their own professional identities, even in the absence of observing or working with doctors in those settings. CONCLUSIONS: Students' reflections revealed that they tend to filter their learning experiences through the lens of future doctoring, especially when involved in challenging clinical situations. Although medical schools have limited influence on interprofessional relationships or mentoring within the environment of community hospitals, support from other staff can help junior students make the most of their engagement in end-of-life care. In-depth reflection may facilitate the links between experience-based learning and students' emerging ideas about their own professional identities, but the underlying mechanisms need further exploration.

General practitioners' participation in cancer treatment in Norway.

INTRODUCTION: General practitioners (GPs) participate in a patient's cancer care to different extents at different times, from prevention and diagnosis to treatment and end-of-life care. Traditionally, the GP has had a minor role in cancer treatment. However, oncological and surgical services frequently delegate limited cancer treatment tasks to GPs, especially in rural areas far from hospitals. The aim of this study was to explore the extent of GPs' participation in cancer treatment in Norway. METHODS: This study was an observational questionnaire study. In 2007, the chief municipal medical officer in all 93 municipalities in North Norway and a 25% random sample (85 municipalities) in South Norway was asked to identify up to five GPs who had recently participated in local treatment of cancer patients, and to forward a patient questionnaire to them. RESULTS: Seventy-eight GPs in 49 municipalities returned completed questionnaires for 118 patients, most of them with progressive disease and living in rural areas. All the GPs reported substantial participation in therapeutic tasks for this select group of patients. Not counting palliative treatment, 64% of the GPs participated in cancer treatment either directly, or indirectly through referrals. Twenty patients received chemotherapy; they belonged to no particular diagnostic category. Eighty-eight percent of the GPs prescribed some kind of palliative medicine, such as analgesic, antiemetic, anxiolytic or antidepressant. Morphine was prescribed equally often by GPs and hospitals. Eighty-one percent of GPs reported having had a thorough conversation with the patient about the patient's condition and circumstances. CONCLUSION: In this group of GPs, participation rates were high for most of the therapeutic and communicative tasks suggested in the questionnaire. GP participation is feasible not only in palliative care, but also in some aspects of oncological treatment and in clinical follow-up. Communication with both patient and hospital seemed good in this local setting. GPs are important helpers for some cancer patients.

Teamwork in primary palliative care: general practitioners' and specialised oncology nurses' complementary competencies.

BACKGROUND: Generalists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care. METHODS: A qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically. RESULTS: The ideal cooperation between GPs and ONs was as a "meeting of experts" with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs' competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly. While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients. CONCLUSIONS: The complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative care. When planning high-quality teamwork in primary care, organizational barriers to cooperation and different cultures for learning need consideration.

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.

Motivation to persist with internet-based cognitive behavioural treatment using blended care: a qualitative study.

BACKGROUND: The prevalence of depression is high and results in huge costs for society. Internet-based cognitive behavioural treatment (ICBT) has been suggested for use in primary care and has been shown to be more effective when combined with human support. However, non-completion rates remain a challenge. Current recommendations state that steps to improve persistence with ICBT should be determined and the impact of therapist support on persistence explored. A few earlier studies have explored motivations to persist with ICBT without face-to-face therapist support. The present study explored the motivation to persist as experienced by a group of patients who sought help in primary care and used "blended care", i.e. ICBT supported by short face-to-face consultations. METHODS: To elucidate motivation in an everyday context and the meaning of patients' experiences we chose a phenomenological hermeneutical approach. We interviewed participants in the intervention group of a randomized controlled trial that evaluated the efficacy of an ICBT programme called MoodGYM, an eHealth intervention used to treat depression. Fourteen participants, both completers and non-completers, went through individual, semi-structured interviews after they ended their treatment. RESULTS: Hope of recovery and a desire to gain control of one's life were identified as intrinsic motivators. The feeling of being able to freely choose how, when and where to complete the ICBT modules was identified as an important supporting condition and satisfied the participants' need for autonomy. Furthermore, the importance of a sense of belonging towards partners, friends or family was essential for motivation as was the ability to identify with ICBT content. Another supporting condition was the experience of connectedness when met with acknowledgement, flexibility and feedback from a qualified therapist in the face-to-face consultations. CONCLUSIONS: A key finding was that participants were motivated to persist with ICBT when their overall need for relatedness was satisfied. This was achieved through a sense of belonging towards partners, friends and family. Connectedness with the therapist and the participant's ability to identify with the ICBT modules also gave a sense of relatedness. Improving these motivational aspects may increase patients' persistence with ICBT.

How does the thought of cancer arise in a general practice consultation? Interviews with GPs.

BACKGROUND: Only a few patients on a GP's list develop cancer each year. To find these cases in the jumble of presented problems is a challenge. OBJECTIVE: To explore how general practitioners (GPs) come to think of cancer in a clinical encounter. DESIGN: Qualitative interviews with Norwegian GPs, who were invited to think back on consultations during which the thought of cancer arose. The 11 GPs recounted and reflected on 70 such stories from their practices. A phenomenographic approach enabled the study of variation in GPs' ways of experiencing. RESULTS: Awareness of cancer could arise in several contexts of attention: (1) Practising basic knowledge: explicit rules and skills, such as alarm symptoms, epidemiology and clinical know-how; (2) Interpersonal awareness: being alert to changes in patients' appearance or behaviour and to cues in their choice of words, on a background of basic knowledge and experience; (3) Intuitive knowing: a tacit feeling of alarm which could be difficult to verbalize, but nevertheless was helpful. Intuition built on the earlier mentioned contexts: basic knowledge, experience, and interpersonal awareness; (4) Fear of cancer: the existential context of awareness could affect the thoughts of both doctor and patient. The challenge could be how not to think about cancer all the time and to find ways to live with insecurity without becoming over-precautious. CONCLUSION: The thought of cancer arose in the relationship between doctor and patient. The quality of their interaction and the doctor's accuracy in perceiving and interpreting cues were decisive.

'I deal with the small things': the doctor-patient relationship and professional identity in GPs' stories of cancer care.

An important part of GPs' work consists of attending to the everyday and existential conditions of human being. In these life world aspects, biomedicine is often not the relevant theory to guide the GP; nevertheless they are a part of GPs' professional domain. In cancer care, previous studies have shown that GPs with a biomedical perspective on medicine could feel subordinate to specialists, and that doctors with a curative focus could see disease progression as a personal failure. The aim of this study was to explore in depth the experiences of being a GP for people with advanced cancer. Fourteen Norwegian GPs were interviewed about accompanying patients through a cancer illness. Their stories were analysed using a narrative approach. The GPs expressed a strong commitment to these patients, a loyalty which in some cases could be weakened due to judgements of distant specialists. In view of the GPs' close knowledge of their patients' background and history this subordination was a paradox, mirroring a hierarchy of medical knowledge. The GPs had an ideal of honesty and openness about death, which they sometimes failed. To reach the ideal of honesty, clinicians would have to abandon the biomedical ideal of mastering human nature through interventions and acknowledge the fundamental uncertainty and finiteness of human life. GPs may learn from being with their patients that bodily and existential suffering are connected, and thus learn implicitly to overlook the body-mind dualism. This practical wisdom lacks a theoretical anchoring, which is a problem not only for general practice.

A doctor close at hand: How GPs view their role in cancer care.

OBJECTIVE: To explore GPs' own views on their role in cancer care. DESIGN: Qualitative study based on semi-structured interviews. SETTING: Norwegian primary care. METHODS: The stories of 14 GPs concerning 18 patients were analyzed for core content and abstracted into general ideas, to create a broader sense of the experienced professional role. RESULTS: The GPs claimed to have an important role in cancer care. In our analysis, three main aspects of GPs' work emerged: first, as a flexible mediator, e.g. between the patient and the clinic, interpreting and translating; second, as an efficient "handyman", solving practical problems locally; and third, as a personal companion for the patient throughout the illness. CONCLUSION: The interviewed GPs see their place in cancer care as being close to their patients. In their many tasks we found three main aspects: the mediating, the practical, and the personal.