Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care-A qualitative focus group study.

AIM: To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care. DESIGN: This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting. METHODS: Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis. RESULTS: Using IPOS for communication with the patient gave an opportunity to understand the patient's care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.

The content and characteristics of face-to-face interventions to encourage patients' enrollment in cardiac rehabilitation; a scoping review.

PURPOSE: To provide an overview of the content and characteristics of face-to-face interventions to encourage enrollment in exercise-based cardiac rehabilitation (CR). METHODS: Following a published protocol describing the methods, six databases were searched. The search was limited to studies published from January 2000 to December 2021. Two reviewers independently performed study selection and data extraction. RESULTS: 5583 studies were identified and 20 studies with a variety of study designs met the inclusion criteria. Eight studies specified important content in face-to-face interventions to be: Education, problem-solving, support of autonomy, exploring reasons for change, emotional and cognitive support while showing understanding. Studies targeting patients' experiences used motivational interviewing and addressed worries and anticipated difficulties. Intention to attend, CR barriers, practical barriers, exercise self-efficacy, and patients asking questions supported enrollment. Reassurance could lead to nonattendance if patients had a high degree of worry and distress. CONCLUSION: Face-to-face interventions are important to support patients' enrollment in CR and should integrate a person-centered dialogue exploring reasons for change and providing support to overcome barriers. Focus on the patients' perspectives, the mechanisms of change, and the evaluation of the intervention to inform implementation should be further explored.Implications for RehabilitationIn-hospital face-to-face interventions support enrollment in cardiac rehabilitation (CR) in patients with ischemic heart disease.This study suggests that individual worries and barriers toward CR should be jointly explored while considering patients' capacity for making choices as well as their vulnerability.Patients should be encouraged to ask questions.A too strong focus on reassurance and problem-solving can impede enrollment.

Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study.

BACKGROUND: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described. OBJECTIVES: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group. METHODS: Geriatric in-patients over 65 years of age were included in the study, those with cognitive impairment were excluded. Data was collected before (baseline) and after the implementation (intervention) of the Swedish Palliative Care Guide. Patient satisfaction was evaluated two weeks after discharge with questions from a national patient survey. Health-related quality of life was measured with EQ-5D-3L and symptom burden with Edmonton Symptom Assessment Scale. RESULTS: In total, 400 patients were included, 200 in the baseline- and intervention group, respectively. Mean age was 83 years in both groups. Patient satisfaction was significantly higher in nine out of ten questions (p = 0.02-<0.001) in the intervention group compared to baseline. No differences between the groups were seen in health-related quality of life or symptom burden. CONCLUSION: A significant effect on patient satisfaction was seen after implementation of the Swedish Palliative Care Guide in geriatric care. Thus, integration of palliative care and geriatrics could be of substantial benefit in the growing population of older adults with multimorbidity and frailty.

Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life.

PURPOSE: Getting an incurable oesophageal or gastric cancer diagnosis is a major stressful life event associated with severe physical, psychosocial and existential challenges. To provide timely and efficient support, based on patients' experiences, the aim of the study was to explore how patients newly diagnosed with incurable oesophageal and gastric cancer manage everyday life. METHOD: Semi-structured interviews were conducted with 12 patients 1-3 months after being diagnosed with incurable oesophageal or gastric cancer. Four participants were interviewed twice, which resulted in 16 interviews. Data were analysed with qualitative content analysis. RESULTS: An overall theme, "Striving towards normality in an unpredictable situation", with three related themes - "Trying to comprehend the disease", "Dealing with the consequences of illness" and "Re-evaluating what is important in everyday life" - and seven sub-themes were identified. The participants described an unexpected and unpredictable situation, in which they strived to maintain their normal life. Amidst struggling to manage problems related to eating, fatigue and an incurable diagnosis the participants talked about the importance of focusing on the positive and normal aspects of life. CONCLUSIONS: The findings in this study point to the importance of supporting patients' confidence and skills, particularly with regard to managing eating, so that they can hold on to their normal life as much as possible. The findings further point to the possible benefit of integrating an early palliative care approach and could provide guidance for nurses and other professionals on how to support patients post diagnosis.

Dying during the COVID-19 Pandemic in Sweden: Relatives' Experiences of End-of-Life Care (the CO-LIVE Study).

Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the "first wave" and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons. Methods: A random sample of addresses for 2400 people who died during March−September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust. Results: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group (p < 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received "enough care from physicians", significantly fewer than the non-COVID group (65%, p < 0.01). Conclusion: Relatives' experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.

Existential aspects documented in older people's patient records in the context of specialized palliative care: a retrospective review.

BACKGROUND: Documentation of older people's end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care. METHODS: Data were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis. RESULTS: The notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients' autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found. CONCLUSIONS: Existential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people's patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients' thoughts and concerns may remain unknown to healthcare professionals.

Symptoms, problems and quality of life in patients newly diagnosed with oesophageal and gastric cancer - a comparative study of treatment strategy.

BACKGROUND: Patients with oesophageal and gastric cancer have a low likelihood of being cured and suffer from a broad spectrum of symptoms and problems that negatively affect their quality-of-life (QOL). Although the majority (67-75%) of patients at the time of diagnosis suffer from an incurable disease, research has primarily focused on the pre- and postoperative phase among patients treated with curative intent, with little attention to symptoms and problems in the diagnostic phase, especially in those who cannot be offered a cure. METHODS: In this cross-sectional study 158 patients newly diagnosed with oesophageal and gastric cancer visiting the surgical outpatient department for a preplanned care visit were included consecutively during 2018-2020. The validated instruments QLQ-C30 and QLQ-OG25, developed by the European Organization for Research and Treatment of Cancer (EORTC), and selected items from the Integrated Patient Outcome Scale (IPOS) were used to assess QOL, symptoms and problems. Differences between patients with a curative and a palliative treatment strategy were analysed using t-test and Mann-Whitney U test. The QLQ-C30 and QLQ-OG25 scores were compared to published reference data on the general Swedish population. RESULTS: Among all, the QOL was markedly lower, compared with general Swedish population (mean ± SD, 55.9 ± 24.7 vs 76.4 ± 22.8, p < 0.001). Compared to general population, the patients had significant impairment in all QOL aspects, particularly for role and emotional functioning and for symptoms such as eating-related problems, fatigue, insomnia and dyspnea. Majority of patients also reported severe anxiety among family and friends. Among patients with oesophageal cancer those with a palliative treatment strategy, compared with curative strategy, reported significantly lower QOL (mean ± SD, 50.8 ± 28.6 vs 62.0 ± 22.9 p = 0.030), physical (65.5 ± 22.6 vs 83.9 ± 16.5, p < 0.001) and role functioning (55.7 ± 36.6 vs 73.9 ± 33.3, p = 0.012), and a higher burden of several symptoms and problems. No significant differences between treatment groups were shown among patients with gastric cancer. CONCLUSIONS: Patients newly diagnosed with oesophageal and gastric cancer, and especially those with incurable oesophageal cancer, have a severely affected QOL and several burdensome symptoms and problems. To better address patients' needs, it seems important to integrate a palliative approach into oesophageal and gastric cancer care.

Similarities and differences between China and Sweden regarding the core features of palliative care for people aged 60 or older: a systematic scoping review.

BACKGROUND: Despite the increasing longevity of the world's population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden. METHODS: The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007-2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains. RESULTS: Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions. CONCLUSIONS: Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons' need for palliative care and should take account of issues concerning research ethics, ethnicity and culture. REGISTERED IN PROSPERO: CRD42020078685 , available from.

A Reduced Deck of Conversation Cards of Wishes and Priorities of Patients in Palliative Care.

The individual wishes and priorities of patients with advanced disease are too often neglected, making a deck of cards with statements reflecting potential wishes and priorities a useful conversation tool. However, in the most ill patients, the card selection and sorting process may be too strenuous. The aims of this study were to explore the wishes and priorities of patients receiving palliative care and to reduce a deck of statement cards to be clinically useable even for the most ill patients. In interviews, participants selected their top 10 from a deck of 46 statement cards. Descriptive and analytical statistics were used. Thirty-nine patients from 5 specialized palliative care units in Sweden participated. Six participants died within 1 month of the interviews. "To be free from pain" was ranked as the highest priority by the majority, and "To have staff I feel comfortable with" was ranked highest by the 6 most ill participants. A deck of cards with the 20 statements most chosen by patients receiving palliative care was created. The cards cover physical, psychological, social, existential, and practical aspects and are helpful for formulating goals of care for patients and informing the development of a core outcome set for palliative care.

The ups and downs of lifestyle modification: An existential journey among persons with severe obesity.

BACKGROUND: Maintaining a healthy living after the end of a lifestyle intervention is a challenge for persons with severe obesity. Measurable outcomes are often emphasised, but there is a need for understanding the process of lifestyle change and the long-term perspectives among persons with severe obesity. AIM AND OBJECTIVE: To describe and deepen the understanding of how persons with severe obesity experience making and maintaining lifestyle changes in everyday life three years after lifestyle intervention. METHODOLOGY AND METHODS: The study used a hermeneutic phenomenological approach. A purposive sample of seven adults with BMI ≥ 40 was recruited from a lifestyle intervention programme. Data were generated through individual follow-up interviews. The analysis was based on theoretical framework on dwelling and mobility. Ethical approvals were received from the Danish Data Protection Agency and the ethical principles of the Declaration of Helsinki were followed. RESULTS: One overarching theme emerged: 'The journey of ups and downs'. Three sub-themes were: 'Living with and tackling the demands of life's hassles', 'Deliberating the fight for weight loss' and 'Needing a trusted person to feel met as a human being'. CONCLUSIONS: Everyday life among persons with severe obesity is experienced as a dynamic process of shifting experiences of dwelling and mobility. Sustained lifestyle changes require ongoing adjustments of action, which healthcare providers can influence in ways that either support or obstruct. Collaboration and a humanised approach across disciplines and sectors are suggested to promote sustained healthy living.

A novel care guide for personalised palliative care - a national initiative for improved quality of care.

BACKGROUND: Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. METHODS: The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. RESULTS: After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients' needs and possibilities for ensuring optimal quality of life, the family included. CONCLUSIONS: Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings - including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Face-to-face interventions to encourage enrolment in cardiac rehabilitation: a scoping review protocol.

INTRODUCTION: Cardiac rehabilitation has become an integral part of secondary treatment of cardiovascular heart disease. Despite evidence demonstrating that cardiac rehabilitation improves prognoses, reduces disease progression and helps patients to find a new foothold in life, many patients do not enrol. Face-to-face interventions can encourage patients to enrol; however, it is unclear which strategies have been developed, how they are structured in a hospital context and whether they target the life-world of the patients. The objective of this scoping review is to map and evaluate the nature and characteristics of studies that have reported on face-to-face interventions to encourage patients to enrol in cardiac rehabilitation. METHODS AND ANALYSIS: This review will be guided by the Joanna Briggs Institute Methodology for Scoping Reviews. A search strategy developed in cooperation with a research secretary will be applied in six databases including studies published from 2000 in English, Danish, Norwegian, Swedish and German with no restriction on publication type or study design. Studies involving adult patients with ischaemic heart disease or heart failure will be included. Studies providing the intervention after enrolment in cardiac rehabilitation will be excluded. Study selection will be performed independently by two reviewers. Data will be extracted by two reviewers using predefined data charting forms. The presentation of data will be a narrative summary of the characteristics and key findings to facilitate the integration of diverse evidence, and as we deem appropriate will be supported by a diagrammatic or tabular presentation. ETHICS AND DISSEMINATION: This scoping review will use data from existing publications and does not require ethical approval. Results will be reported through publication in a scientific journal and presented on relevant conferences and disseminated as part of future workshops with professionals involved in communication with patients about enrolment in cardiac rehabilitation.

Enduring life in between a sense of renewal and loss of courage: lifeworld perspectives one year after hip fracture.

Purpose: To explore everyday life experiences of being active in aged adults´ with walking impairment one year after hip fracture (HF).Methods: A phenomenological-hermeneutic study design is based on Heidegger´s and Gadamer´s thinking focusing on aged adults being-in-the-world one year after HF. Individual semi-structured interviews were conducted from May to July 2017 in the homes of nine participants, who were part of a longitudinal qualitative study with four interview-rounds for a period of 18 months after the HF event. The analysis was interpretative and secured that the authors´ pre-understanding was put at stake through a five-step process of meaning condensation.Results: One theme, "Enduring life in between a sense of renewal and loss of courage", described aged adults´ experiences of being active in three sub-themes: "Facing loss and losing courage", "Taking up the challenge and maintaining courage ", and "Renewing the energy to be active". Living with being under change and increased vulnerability created a challenge in maintaining courage and reaching for possibilities to unfold their own being in life.Conclusion: This study contributes knowledge on how the aged adults´ experiences of the balance between courage and loss in being active one year after HF are profoundly connected with experiences of well-being.

Sensations, symptoms, and then what? Early bodily experiences prior to diagnosis of lung cancer.

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care.

This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

[Redefining palliative care- focusing serious suffering of severe illness]. / Ny definition av palliativ vård med fokus på lidande.

Palliative care was initially developed for patients with a cancer diagnosis and severe symptoms. Despite the ambition to broaden the palliative care approach to include other groups, patients with cancer are still a majority in specialised palliative care. The broader view and development of palliative care has led to an intense debate on existing definitions. Following a request from The Lancet Commission on global palliative care, the International Association of Hospice and Palliative Care (IAHPC) has presented a new definition. The proposal was developed in several stages, in collaboration with specialists in palliative care from a total of 88 countries. The IAHPC's definition differs from the WHO's definition in several aspects. Most importantly, the IAHPC's definition takes a reversed perspective and instead of focusing on life-threatening illness as motivating palliative care, the new proposal focuses on serious suffering of a person with severe illness.

Being active 1½ years after hip fracture: a qualitative interview study of aged adults' experiences of meaningfulness.

BACKGROUND: Being active is vital and a source of well-being. However, 18 months after hip fracture (HF), progress seems to have come to a halt. Aged adults may feel vulnerable, experiencing ongoing dependency and limited possibilities for socializing. How they experience the meaningfulness of being active during these circumstances is unknown. The aim of this study was to explore experiences of the meaningfulness of being active for aged adults 18 months after HF. METHODS: A phenomenological-hermeneutic methodology based on the philosophies of Heidegger and Gadamer was applied. Data were collected using individual interviews conducted in participants' homes. The study was part of a longitudinal study, and three former interviews helped build trusting relationships with participants and focus the semi-structured interview guide. An existential theory of well-being and suffering considering health to be a balancing of mobility and dwelling was applied. Participants were nine aged adults 65 years or older with pre-fracture dependency included in the study 18 months earlier while still in hospital after HF. The interpretation was a process of analyzing data by moving between the parts and the whole as a means of gaining a deeper understanding and continuously testing pre-understandings. The analysis followed five steps: a) getting a sense of the whole b) delineating and condensing meaning units, c) interpreting meaning units, d) relating to study purpose, and e) developing themes and sub-themes. RESULTS: Two main themes emerged. The main-theme "Feeling the continuity of life "had four sub-themes: "Gratitude for present possibilities, ""Connected with earlier life-experience, ""Thoughtfully managing vulnerability, "and "Belonging with other people. "The main-theme "Feeling vulnerable "had two sub-themes: "Thwarted "and "Sad and regretting lost continuity in life.". CONCLUSIONS: Eighteen months after HF, aged adults seem to be struggling on their own to be active in meaningful ways. To maintain hope, relieve the strain in everyday life, and maintain a sense of safety and self-confidence, they may need help. However, to avoid suffering, there is a need to balance additional training and a struggle for progress with well-being experiences in terms of feeling gratitude, restoring a sense of normality, and feeling kinship with other people.

The convivial and the pastoral in patient-doctor relationships: a multi-country study of patient stories of care, choice and medical authority in cancer diagnostic processes.

Experiences of cancer diagnosis are changing in light of both the increasingly technological-clinical diagnostic processes and the socio-political context in which interpersonal relations take place. This has raised questions about how we might understand patient-doctor relationship marked by asymmetries of knowledge and social capital, but that emphasise patients' empowered choices and individualised care. As part of an interview study of 155 participants with bowel or lung cancer across Denmark, England and Sweden, we explored participants' stories of the decisions made during their cancer diagnostic process. By focusing on the intersections of care, choice and medical authority - a convivial pastoral dynamic - we provide a conceptual analysis of the normative ambivalences in people's stories of their cancer diagnosis. We found that participants drew from care, choice and medical authority to emphasise their relationality and interdependence with their doctors in their stories of their diagnosis. Importantly negotiations of an asymmetrical patient-doctor relationship were part of an on-going realisation of the healthcare processes as a human endeavour. We were therefore able to draw attention to the limitations of dichotomising emancipatory-empowerment discourses and argue for a theorisation of the patient-doctor relationship as a contextually bounded and relationally ambivalent humanity.