Effectiveness of integrated person-centered interventions for older people's care: Review of Swedish experiences and experts' perspective.

Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.

Trends in the place of death in Sweden from 2013 to 2019 - disclosing prerequisites for palliative care.

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system. Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization. Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses. Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97-0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region. Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested.

Deconstructing spiritual care: Discursive underpinnings within palliative care research.

Religion and spirituality are integral to the philosophy of palliative care, shaping its approach to spiritual care. This article aims to examine the discourses within palliative care research to illuminate prevailing assumptions regarding spiritual care. Eighteen original articles were analyzed to examine how spiritual care is understood within palliative care. The analysis, informed by Foucault, aimed to identify recurring discourses. The finding reveals that, in palliative care research, spirituality is viewed as enigmatic yet inherently human and natural, assuming that every individual has a spiritual dimension. The analysis points to healthcare professionals being expected to hold certain qualities to put spiritual care into practice. The analysis also reveals that in the analyzed articles, the concept of spiritual care is rooted in a Christian context, with the belief that all individuals possess inherent spirituality or religiosity, a concept often associated with Christian theology. The included articles often utilize theological terms and emphasize a monotheistic viewpoint. Spirituality is articulated as a complex, distinct concept, challenging clear definitions and professional responsibilities. Further, a moral formation of healthcare professionals is described, interpelling and ascribing qualities that healthcare professionals need to provide spiritual care.

Predictors of preparedness for recovery following colorectal cancer surgery: a latent class trajectory analysis.

AIM: With an interest in providing knowledge for person-centred care, our overall goal is to contribute a greater understanding of diversity among patients in terms of their preparedness before and up to six months after colorectal cancer surgery. Our aim was to describe and provide a tentative explanation for differences in preparedness trajectory profiles. MATERIAL AND METHODS: The study was explorative and used prospective longitudinal data from a previously published intervention study evaluating person-centred information and communication. The project was conducted at three hospitals in Sweden. Patient-reported outcomes measures, including the Longitudinal Preparedness for Colorectal Cancer Surgery Questionnaire, were collected before surgery, at discharge, and four to six weeks, three months, and six months after surgery. Clinical data were retrospectively obtained from patients' medical records. We used latent class growth models (LCGMs) to identify latent classes that distinguish subgroups of patients who represent different preparedness trajectory profiles. To determine the most plausible number of latent classes, we considered statistical information about model fit and clinical practice relevance. We used multivariable regression models to identify variables that explain the latent classes. RESULTS: The sample (N = 488) comprised people with a mean age of 68 years (SD = 11) of which 44% were women. Regarding diagnoses, 60% had colon cancer and 40% rectal cancer. The LCGMs identified six latent classes with different preparedness for surgery and recovery trajectories. The latent classes were predominantly explained by differences in age, sex, physical classification based on comorbidities, treatment hospital, global health status, distress, and sense of coherence (comprehensibility and meaningfulness). CONCLUSION: Contrary to the received view that emphasizes standardized care practices, our results point to the need for adding person-centred and tailored approaches that consider individual differences in how patients are prepared before and during the recovery period related to colorectal cancer surgery.

Attitudes towards death and dying among intensive care professionals: A cross-sectional design evaluating culture-related differential item functioning of the frommelt attitudes toward care of the dying instrument.

Objective: The objective is to examine whether one of the most used instruments for measuring attitudes towards caring for dying patients, the Frommelt Attitude Toward Care of the Dying (FATCOD-B) instrument, has the same meaning across different societal contexts, as exemplified by Swedish and Saudi Arabian intensive care professionals. Methods: A cross-sectional design used the 30-item FATCOD-B questionnaire. It was distributed to intensive care professionals from Sweden and Saudi Arabia, generating a total sample of 227 participants. Ordinal logistic regression models were used to examine the differential item functioning (DIF) for each item. Results: Up to 12 of the 30 items were found to have significant DIF values related to: (a) Swedish and Saudi Arabian intensive care professionals, (b) Swedish and Saudi Arabian registered nurses (RNs), (c) RNs' levels of experience and (d) RNs and other intensive care professionals in Saudi Arabia. Conclusions: The results indicate that FATCOD should be used cautiously when comparing attitudes towards death and dying across different societal and healthcare contexts.

Living with a parent with ALS - adolescents' need for professional support from the adolescents' and the parents' perspectives.

AIM: The aim of the study was to qualitatively investigate the adolescents' need for professional support when a parent has amyotrophic lateral sclerosis (ALS) - from the adolescents' and the parents' perspectives. METHODS: A total of 37 individual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26 parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. RESULTS: Both adolescents and parents described the adolescents as needing professional support but found it difficult to articulate this need. However, the results indicate that the adolescents needed help in bringing manageability into their lives due to the uncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not forgotten in the disease context and that their needs for being involved as well as for obtaining information and understanding, was addressed. The importance of offering the adolescents support early was emphasized, but also of actively helping the families to master challenges in their everyday life. Support adapted to each family's unique situation and preferences was desired, as the adolescents' need for support seemed to be individual, disease-dependent and varied during different phases. CONCLUSION: Given the adolescents' need for information and understanding, healthcare professionals must actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given the opportunity to be involved based on their own conditions, as well as to support the families to strengthen their communication.

Place of death among foreign-born individuals: a national population-based register study.

Background: Relatively little is known about where foreign-born individuals die in Sweden and how birth region might influence place of death. Thus, there is a need for population-based studies investigating place of death and associated factors among foreign-born individuals. Objectives: The aim of this study was to identify variations in place of death among foreign-born individuals residing in Sweden and to compare place of death between the foreign- and domestic-born population. We also examine the association between place of death, underlying cause of death and sociodemographic characteristics among the foreign-born population. Design: A population-based register study. Methods: All deceased individuals ⩾18 years of age in Sweden with a registered place of death between 2012 and 2019 (n = 682,697). Among these, 78,466 individuals were foreign-born. Univariable multinomial logistic regression modelling and multivariable multinomial logistic regression analyses were performed. Results: Overall, hospital was the most common place of death among the foreign-born population. However, there were variations in place of death related to region of birth. Compared to domestic-born, a higher proportion of foreign-born individuals dies at home, the majority of whom were born on the African continent. Conclusion: Region of birth is one of the several factors associated with place of death among foreign-born individuals. Further research is needed to explore both preferences and barriers to place of death among foreign-born individuals.

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.

The use of text-mining software to facilitate screening of literature on centredness in health care.

Research evidence supporting the implementation of centredness in health care is not easily accessible due to the sheer amount of literature available and the diversity in terminology and conceptualisations used. The use of text-mining functions to semi-automate the process of screening and collating citations for a review is a way of tackling the vast amount of research citations available today. There are several programmes that use text-mining functions to facilitate screening and data extraction for systematic reviews. However, the suitability of these programmes for reviews on broad topics of research, as well as the general uptake by researchers, is unclear. This commentary has a dual aim, which consists in outlining the challenges of screening literature in fields characterised by vague and overlapping conceptualisations, and to exemplify this by exploratory use of text-mining in the context of a scoping review on centredness in health care.

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.

Healthcare Professionals' Perspective on Palliative Care in Intensive Care Settings: An Interpretive Descriptive Study.

There is a growing need to integrate palliative care into intensive care units and to develop appropriate knowledge translation strategies. However, multiple challenges persist in attempts to achieve this objective. In this study, we aimed to explore intensive care professionals' perspectives on providing palliative and end-of-life care within an intensive care context. We used an interpretive description approach and interviewed 36 intensive care professionals at four hospitals in Saudi Arabia. Our findings reflect a discourse about end-of-life care driven by a do-not-resuscitate classification and challenges associated with family involvement in care goals. We provide key insights of importance for the development of strategies for the integration and knowledge translation of palliative care into intensive care contexts.

Using Ricoeur's notions on narrative interpretation as a resource in supporting person-centredness in health and social care.

This article suggests a shift in focus from stories as verbal accounts to narrative interpretation of the every day as a resource for achieving person-centred health and social care. The aim is to explore Ricoeur's notion of narrative and action, as expressed in his arguments on a threefold mimesis process, using this as a grounding for the use of narration to achieve person-centredness in health and social care practice. This focus emerged from discussions on this matter at the IPONS conference in Gothenburg, 2021. Based on philosophical resources from Ricoeur's notions of narrative and action developed in his arguments on a threefold mimesis process, we propose a wider use of stories in health and social care practices. We suggest expanding from only focusing on verbal accounts to focusing on narrative as a human way to interpret and make sense of everyday life and circumstances and to communicate possible meanings. We discuss how such complementary focus can be a resource in getting patients involved and collaborating in their health and social care and thereby help develop person-centred practices.

Relating person-centredness to quality-of-life assessments and patient-reported outcomes in healthcare: A critical theoretical discussion.

Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient-reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices-and in the endgame, people's lives-might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person-centredness. First, we engage with the late-modern history of the concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person-centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for.

Pandemic impact on patients with advanced non-COVID-19 illness and their family carers receiving specialised palliative home care: a qualitative study.

OBJECTIVES: To investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers. DESIGN: An interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020. SETTING: Patients receiving specialised palliative home care and their family carers living in Sweden. PARTICIPANTS: 22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer. INCLUSION CRITERIA: aged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling. RESULTS: The significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact. CONCLUSIONS: In the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.

Strategies for knowledge translation of a palliative approach outside specialized palliative care services: a scoping review.

OBJECTIVES: Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area. METHODS: A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles). RESULTS: Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs. CONCLUSION: Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited.

Centredness in health care: A systematic overview of reviews.

INTRODUCTION: The introduction of effective, evidence-based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews. METHODS: Searches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017-December 2018, were applied. RESULTS: The search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews. CONCLUSIONS: Our synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation. PATIENT OR PUBLIC CONTRIBUTION: Patient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach.

BACKGROUND: Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. OBJECTIVE: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents' views and health care professionals' expectations and requirements for an mHealth tool. METHODS: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. RESULTS: A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non-clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child's voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. CONCLUSIONS: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

Being heard - Supporting person-centred communication in paediatric care using augmentative and alternative communication as universal design: A position paper.

Person-centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal design put forth in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person-centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person-centred communication is supported in paediatric care.