Do Interventions Meet the Needs of Caregivers of Cardiac Patients?: A Scoping Review.

BACKGROUND: Interventions targeting the needs of caregivers of cardiac patients are few, and in most cases, no effect is found on caregivers' well-being. A closer look at the existing interventions will provide a solid foundation for future efforts to develop effective interventions targeted at caregivers of cardiac patients. OBJECTIVE: The study's objective was to scrutinize and discuss interventions targeting caregivers of cardiac patients and contribute to reflections that will improve future interventions. METHODS: Systematic scoping of the literature within the field was conducted through a literature search in PubMed, EMBASE, CINAHL, PsycINFO, and Cochrane Library from January 2011 to May 2022. The development of search terms and inclusion criteria was inspired by the Patient problem/population, Intervention, Comparison/Control, and Outcome approach, and the Medical Research Council framework for developing and evaluating complex interventions served as the underlying basis for the analysis. RESULTS: Eleven articles were included. The interventions reported in the articles were generally not systematically developed and did not include field-specific, methodological, and theoretical reflections. Furthermore, the development process behind the studies seemed not to be transparent. CONCLUSIONS: Lack of systematic methodology and methodological transparency in the reviewed studies hinders further testing of interventions and might explain lack of evidence for effective interventions within the field. More systematic, needs-based, and well-documented interventions targeting caregivers of various kinds of cardiac patients are needed to develop the field to the benefit of caregivers, patients, and society.

Searching for a brighter future-Lived experiences of ongoing recovery processes following COVID-19 infection.

BACKGROUND: Research in Denmark indicates that approximately 30% of people with confirmed COVID-19 infection experience at least one physical symptom 6-12 months after the acute infection. The lived experiences of undergoing prolonged recovery processes and how these processes unfold need further attention. AIM: To contribute in-depth knowledge about recovery, as experienced over time by people living with the post COVID-19 condition. METHODS: Within a qualitative research design, nine women and six men were interviewed. Ten of them gave a follow-up interview. Prompt cards and participant-generated photographs were included. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis. FINDINGS: Living with long-term health problems associated with the post COVID-19 condition involved recovery processes where participants struggled with reduced capacity, new unpredictability and uncertainty in everyday life. Participants continuously searched for improvement and aimed for regaining former health and well-being. Lack of knowledge, acknowledgement and support made it difficult to find clear directions for improvement. Participants created a protective shield and struggled, often jointly with family and friends, to cope with bodily, cognitive, emotional, existential and social challenges. Over time, some participants realised that they might not be able to fully return to their earlier habitus. However, some of them gained a new foothold and sense of hope for the future. CONCLUSION: This study provides in-depth insight into the experience of changing and open-ended recovery processes while living with the post COVID-19 condition. Over time, some participants learned to rebuild their lives, adapting to their reduced capacities. Future care and rehabilitation models for these patients must address the complex and challenging nature of recovery processes associated with living with post-COVID-19 condition.

Nurses' perspectives on challenges and facilitators when implementing a self-management support intervention as an everyday healthcare practice: A qualitative study.

AIM: To explore registered nurses' perspectives on challenges and facilitators to implementing a telephone-based self-management support (SMS) intervention (Proactive Health Support) as an everyday healthcare practice, during the early stages of implementation. DESIGN: Data were collected using a qualitative research design involving focus-group interviews and participant observations. METHODS: We conducted participant observation following nine nurses and four focus group interviews with 14 nurses. Data were analysed using thematic analyses. RESULTS: Proactive Health Support was implemented in units organized independently of the existing organizational units within healthcare services. This independent organization, along with the intervention's generic (non-disease specific) design, empowered nurses to become autonomous practitioners capable of prioritizing the operationalization of SMS as an everyday healthcare practice. However, unlearning already embedded medical practices and establishing new nursing roles necessary to accommodate the intervention in practice was experienced a challenge. Education and supervision were identified as valuable tools for successful implementation. CONCLUSION: Our study highlights the significance of organizational context and autonomy in successful SMS implementation. Balancing external factors like organizational context, priority and time is vital, but navigating the internal shift in professional practice is equally crucial. Role transition processes can constitute challenges demanding accommodation. IMPLICATIONS FOR THE PROFESSION: From a nursing perspective, this study highlights that practising SMS requires substantial training and education. Generic SMS interventions can introduce higher levels of contingency due to their versatile nature. Thus, equipping nurses with competencies that enable them to navigate this unpredictability flexibly is crucial. IMPACT: Policymakers and administrators should allocate resources and support implementation processes in ways that accommodate both internal and external conditions to facilitate nurses in delivering effective SMS. REPORTING METHOD: This study adheres to the SRQR guideline. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

The Danish landscape of providing support for caregivers of people with potentially life-threatening disease: A cross-sectional study among representatives of health services in Danish municipalities and hospitals.

AIMS: (a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings. METHODS: A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives. RESULTS: The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation. CONCLUSIONS: Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers.

Symptoms of total pain experienced by older people with advanced gastrointestinal cancer receiving palliative chemotherapy.

OBJECTIVE: Little is known about concurrent physical, psychological, social and spiritual distress experienced by older patients during early stages of advanced cancer while receiving life-prolonging treatment. Drawing on the concept of total pain, this study explored the multi-faceted symptoms of pain in older patients with advanced gastrointestinal cancer while receiving palliative chemotherapy. METHODS: A total of 14 in-depth interviews with seven participants were conducted, one interview at the beginning and one after completion of chemotherapy. Participants were ≥70 years, diagnosed with advanced gastrointestinal cancer and receiving palliative chemotherapy. RESULTS: Thematic analysis revealed four themes: variability and inevitability of physical pain, ways of coping with psychological pain, mitigating social pain through contributions to social life and the anticipation of existential pain in old age. Conducting two interviews with each participant foregrounded the changing nature of the participants' experienced symptoms and life perspectives while receiving palliative chemotherapy. Further, old age was experienced as integral to how participants described their situation and indicated an acceptance of old age. CONCLUSION: Older adults with advanced cancer are affected by multiple-faceted symptoms resulting from cancer and its treatment. The concept of total pain is suggested to guide interdisciplinary palliative care in earlier stages of advanced cancer.

Cancer rehabilitation and palliative care for socially vulnerable patients in Denmark: an exploration of practices and conceptualisations.

Background: Despite a tax-funded, needs-based organisation of the Danish health system, social inequality in cancer rehabilitation and palliative care (PC) has been noted repeatedly. Little is known about how best to improve access and participation in cancer rehabilitation and PC for socio-economically disadvantaged and socially vulnerable patients. Aim: To gather, synthesise and describe practice-orientated development studies presented in Danish-language publications and examine the underpinning conceptualisations of social inequality and vulnerability; explore related views of stakeholders working in the field. Methods: The study comprised a narrative review of Danish-language literature on practice-orientated development studies which address social inequality and vulnerability in cancer rehabilitation and PC and an online stakeholder consultation workshop with Danish professionals and academics working in the field. Results: Two themes characterise the included publications (n = 8): types of interventions; conceptualisations of social inequality and vulnerability; three themes were identified in the workshop data: focus and type of interventions; organisation of cancer care; and vulnerability of the healthcare system. The publications and the workshop participants (n = 12) favoured approaches which provide additional individualised resources throughout the cancer trajectory for this patient group. The terms social inequality and social vulnerability are largely used interchangeably, and associated with low income and no or little education yet qualified with multiple descriptors, which reflect the diverse socio-economic situations professionals encounter in cancer patients and their psychosocial needs. Conclusion: Addressing social inequality and vulnerability in cancer rehabilitation and PC in Denmark entails practical and conceptual challenges. Of importance is individualised support and the integration of rehabilitation and PC into standardised care pathways. To conceive of social vulnerability as a layered, dynamic, relational and contextual concept reflects current practice in identifying the diversity of cancer patients who may benefit from additional support in accessing and participating in rehabilitation and PC.

Dynamics of a specialized and complex health care system: Exploring general practitioners' management of multimorbidity.

OBJECTIVE: To explore general practitioners' (GPs') experiences of cooperation with hospital-based physicians regarding multimorbid patients and to identify challenges as well as strategies in managing such challenges.Study setting: Three medical practices in a provincial town in Denmark. STUDY DESIGN: A qualitative methodological design was used with explorative data collection among GPs.Data collection/Extraction methods: Participant observation, qualitative interviews and a focus group interview were conducted. Interpretive description was used as the analytical framework.Principal findings: The GPs appreciated cooperating with physicians in optimizing treatment of multimorbid patients. However, three main challenges were experienced: insufficient communication and coordination; unclear divisions of roles and responsibilities; and differences in the way of approaching patients. The GPs navigated these challenges and complexities by taking advantage of their personal relationships and by developing creative and patient-centred ad hoc solutions to difficulties in cross-sectorial cooperation. A hospital initiative to support care for multimorbid patients has not been adopted by the GPs as a preferred strategy. CONCLUSIONS: The structures of the health care system severely challenged cooperation regarding multimorbid patients; nevertheless, these GPs were aware of the advantages of cooperation, and their mainstay strategy in this involved personalized solutions and flexibility.

The lived experience of uncertainty in everyday life with MS.

PURPOSE: This article examines how issues of control, certainty, and uncertainty are experienced and managed in everyday life with multiple sclerosis (MS) and explores the ways in which people living with MS make sense of these experiences. MATERIALS AND METHODS: Qualitative interviews with 23 women and men diagnosed with MS and four relatives were carried out in Denmark. Drawing on the notion of "phenomenological uncertainty," a thematic approach was used to analyse the interview data. RESULTS: Three themes characterise participants' experience of uncertainty: the body and issues of control; symptom fluctuations and disease progression; understanding and interpreting embodied MS experiences. Shared, between the themes, is a focus on the body and multi-faceted bodily aspects of uncertainty across diverse temporalities. CONCLUSION: Phenomenological uncertainty shapes and pervades the everyday lived experience of MS in the present and future. Gaining a sense of control and certainty in the face of daily uncertainty demands ongoing self-surveillance, and the evaluation and reconciliation of fluctuating MS symptom expressions and disease progression with personal needs, abilities, and management strategies.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals and physicians should consider the lived experience of uncertainty in everyday life with MS in all their contacts with people living with MS.The multi-faceted uncertainties experienced by people living with MS should be actively acknowledged and incorporated in discussions of MS rehabilitation options and when integrating MS guideline content into activities-of-daily-living advice.Discussions of MS medical treatment options should actively consider and integrate the multi-faceted uncertainties experienced by people living with MS.

Personalised medicine and the state: A political discourse analysis.

The last decade has seen a range of health policy initiatives relating to personalised medicine. There is an emerging body of studies that demonstrates the continued importance of states in the development of personalised medicine. This paper contributes to this literature by focusing on how political discourses construct the role of states in personalised medicine. Based on a case study of the introduction of a national programme in Denmark, the analysis identifies specific discursive mechanisms in this construction. The material consists of documents from key national stakeholders, media coverage and interviews with experts at the national level. The analysis found three types of discursive mechanisms. Firstly, mechanisms can relate to problem definitions, and these were concerned with a number of salient problems of health services. Secondly, mechanisms can relate to underlying assumptions, and these were about the possibility of engineering healthcare improvement through data and by extension personalised medicine. Thirdly, mechanisms can relate to discursive effects, and here the state emerged as a highly influential governor. These mechanisms are likely to be highly relevant for other countries, but future research needs to test this. Health policy practitioners and health administrators thus need to invest effort into influencing political discourses around personalised medicines, in addition to the formulation of policies itself.

Exploring patient experiences of participating in a telephone-based self-management support intervention: Proactive Health Support (PaHS).

AIM: Proactive Health Support is a telephone-based self-management intervention that is carried out in Denmark by Registered Nurses who provide self-management support to people at risk of hospital admission. We aimed to explore participants' experiences of Proactive Health Support and to identify what the participants find important and meaningful during the intervention process. DESIGN: Qualitative design involving semi-structured interview. METHODS: Using a phenomenological-hermeneutical framework, we conducted semi-structured interviews with 62 participants in their own homes (32 women, 30 men; aged 20-81 years) in spring and fall 2018. RESULTS: The participants felt confident that they could discuss every matter with the nurses. Participants benefitted from accessibility to the nurses' professional and medical competences and they felt relief that the nurses contacted them via the telephone due to their multiple health conditions. The participants felt that the nurses were available and helped them to navigate the healthcare system. CONCLUSION: The participants valued the intervention because they benefitted from the nurses' holistic approach. They described the nurses' knowledge and professionalism in relation to their symptoms, treatments, and medicine as important and meaningful. Accordingly, the intervention seemed to promote feelings of independence and self-management among the participants. IMPACT: From a nursing perspective, the study highlights that it is possible to establish a close relationship and behavioural change among participants through regular telephone contact.