Person-centred conversations in nursing and health: A theoretical analysis based on perspectives on communication

In this paper we use the concept of the person to examine person-centred dialogue and show how person-centred dialogue is different from and significantly more than transfer of information, which is the dominant notion in health care. A further motivation for the study is that although person-centredness as an idea has a strong heritage in nursing and the broader healthcare discourse, person-centred conversation is usually discussed as a distinct and unitary approach to communication, primarily related to the philosophy of dialogue—the philosophy of Martin Buber. In this paper we start with the concept of person to critically reflect on theoretical perspectives on communication to understand person-centred conversations in the context of nursing and health. We position the concept of the person through the use of Paul Ricoeur's philosophy and follow by distinguishing four theoretical perspectives on communication before reflecting on the relevance of each of these for person-centred communication. These perspectives are: a linear view of communication as transfer of information, communication as a relation in the sense of philosophy of dialogue, practice-based communication on constructionist grounds, and communication as a practice to create social community. In relation to the concept of the person, we do not find transfer of information relevant as a theoretical underpinning for person-centred conversations. From the other three perspectives that are relevant we distinguish five types of person-centred conversations pertinent to nursing and health: problem identifying conversations, instructive conversations, guiding and supportive conversations, caring and existential conversations, and therapeutic conversations. Through this analysis it is argued that person-centred communication and conversations are substantially different to transfer of information. We also discuss the significance of communication adjusted to specific situations, including emphasis on how we speak in relation to the aim or topic of a conversation.publishedVersio

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation

Visibility of nursing in policy documents related to health care priorities

Aim To explore the visibility of nursing in policy documents concerning health care priorities in the Nordic countries.Background Nurses at all levels in health care organisations set priorities on a daily basis. Such prioritization entails allocation of scarce public resources with implications for patients, nurses and society. Although prioritization in health care has been on the political agenda for many years, prioritization in nursing seems to be obscure in policy documents.Methodology Each author searched for relevant documents from their own country. Text analyses were conducted of the included documents concerning nursing visibility.Results All the Nordic countries have published documents articulating values and criteria relating to health care priorities. Nursing is seldom explicitly mentioned but rather is included and implicit in discussions of health care prioritization in general.Conclusion There is a need to make priorities in nursing visible to prevent missed nursing care and ensure fair allocation of limited resources.Implications for nursing management To highlight nursing priorities, we suggest that the fundamental need for nursing care and what this implies for patient care in different organisational settings be clarified and that policymakers explicitly include this information in national policy documents

Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care.

Funder: Linnaeus UniversityBACKGROUND: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care. METHODS: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. RESULTS: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health. CONCLUSION: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed

Illness narratives of people who are homeless

Multiple illnesses are common in all homeless populations. While most previous studies have focused on experiences of mental illness, there is a scarcity of studies about experiences of bodily illness among people who are homeless. This study aimed to explore illness narratives of people who are homeless, and how homelessness as a social context shapes the experience of multiple and/or advancing somatic conditions. The design was a qualitative single-case study, using interpretive description. Data were generated through interviews, with nine participants who were homeless rough sleepers in Stockholm, Sweden, recruited while receiving care in a support home for homeless people with complex care needs. The findings revealed experiences of illness embedded in narratives about falling ill, being ill, and the future. The particularity of these illness narratives and the way that they are shaped by homelessness give rise to several observations: the necessity of a capable body for survival; chaos and profound solitude in illness and self-care management; ambiguous feelings about receiving care, transitioning from independence, and “freedom” in the streets to dependency and being institutionalized; and finally, the absence of hope and desire for recovery or a better future. The narratives are discussed from the perspective of Frank's four types of illness stories (restitution, chaos, quest, and testimony). The findings stress that to provide appropriate care and support to people who are homeless and have multiple and/or advancing somatic conditions, health care professionals need to be informed both about the individual's biography and about the circumstances under which illness and self-care takes place in the streets

Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: A life-world phenomenological study.

Background: Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. Methods: This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. Results: This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves – a new experience that lays the foundation for development of knowledge, personal learning and growth. Conclusions: People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty

Empirical Phenomenological Inquiry: Guidance in Choosing Between Different Methodologies

Empirical phenomenological inquiry and analyses are of high relevance and applicability for nursing and health care. Phenomenology has clear roots in philosophy, which needs to be brought into an empirical phenomenological inquiry. However, all study of phenomena and experience does not qualify as phenomenological inquiry. The aim of this article is to provide guidance for how to relate different empirical phenomenological methodologies that are in play in the broader field of healthcare research, and thus support healthcare researchers in navigating between these methodologies. For pedagogical purposes, we present commonalities and differences as related to descriptive and interpretive phenomenological inquiries throughout the research process. The merits and criticisms of empirical phenomenological inquiry are commented on

Jag har också ett liv - anhörigas upplevelse och behov av stöd vid vård av en närstående med demenssjukdom

Syftet är att beskriva betydelsen av stöd till anhöriga för att de ska kunna hantera det dagliga livet när de lever med en partner som har demenssjukdom. Tio kvinnor och män intervjuades. Analysen utfördes med hjälp av konstant komparativ metod. Resultatet visar att anhöriga som vårdar en partner med demenssjukdom i hemmet, rör sig mellan en känsla av att livet är begränsat och att få möjlighet till eget liv. Dessa känslor är inte konstanta utan är en rörelse som kan gå fram och tillbaka och påverkas av olikartade[MOU1]  faktorer. Om anhöriga ska ha möjlighet till ett eget liv så bör stödet från samhället vara flexibelt och anpassat till den anhörige och hens situation. Ett proaktivt förhållningssätt och tidiga insatser tidigt i sjukdomsförloppet är viktigt för att anhöriga ska kunna uppleva att de har ett eget liv. [MOU1]flera  ?Syftet är att beskriva betydelsen av stöd till anhöriga för att de ska kunna hantera det dagliga livet när de lever med en partner som har demenssjukdom. Tio kvinnor och män intervjuades. Analysen utfördes med hjälp av konstant komparativ metod. Resultatet visar att anhöriga som vårdar en partner med demenssjukdom i hemmet, rör sig mellan en känsla av att livet är begränsat och att få möjlighet till eget liv. Dessa känslor är inte konstanta utan är en rörelse som kan gå fram och tillbaka och påverkas av flera  faktorer. Om anhöriga ska ha möjlighet till ett eget liv så bör stödet från samhället vara flexibelt och anpassat till den anhörige och hens situation. Ett proaktivt förhållningssätt och tidiga insatser tidigt i sjukdomsförloppet är viktigt för att anhöriga ska kunna uppleva att de har ett eget liv.