Study protocol for two stepped-wedge interventional trials evaluating the effects of holistic information technology-based patient-oriented management in older multimorbid patients with cancer: The GERONTE trials.

INTRODUCTION: Current hospital-based care pathways are generally single-disease centred. As a result, coexisting morbidities are often suboptimally evaluated and managed, a deficiency becoming increasingly apparent among older patients who exhibit heterogeneity in health status, functional abilities, frailty, and other geriatric impairments. To address this issue, our study aims to assess a newly developed patient-centred care pathway for older patients with multimorbidity and cancer. The new care pathway was based on currently available evidence and co-designed by end-users including health care professionals, patients, and informal caregivers. Within this care pathway, all healthcare professionals involved in the care of older patients with multimorbidity and cancer will form a Health Professional Consortium (HPC). The role of the HPC will be to centralise oncologic and non-oncologic treatment recommendations in accordance with the patient's priorities. Moreover, an Advanced Practice Nurse will act as case-manager by being the primary point of contact for the patient, thus improving coordination between specialists, and by organising and leading the consortium. Patient monitoring and the HPC collaboration will be facilitated by digital communication tools designed specifically for this purpose, with the added benefit of being customisable for each patient. MATERIALS AND METHODS: The GERONTE study is a prospective international, multicentric study consisting of two stepped-wedge trials performed at 16 clinical sites across three European countries. Each trial will include 720 patients aged 70 years and over with a new or progressive cancer (breast, lung, colorectal, prostate) and at least one moderate or severe multimorbidity. The patients in the intervention group will receive the new care pathway whereas patients in the control group will receive usual oncologic care. DISCUSSION: GERONTE will evaluate whether this kind of holistic, patient-oriented healthcare management can improve quality of life (primary outcome) and other valuable endpoints in older patients with multimorbidity and cancer. An ancillary study will assess in depth the socio-economic impact of the intervention and deliver concrete implementation guidelines for the GERONTE intervention care pathway. TRIAL REGISTRATION: FRONE: NCT05720910 TWOBE: NCT05423808.

Dimensions of patient-centred care from the perspective of patients and healthcare workers in hospital settings in sub-Saharan Africa: A qualitative evidence synthesis.

INTRODUCTION: The United States Institute of Medicine defines patient centred care (PCC), a core element of healthcare quality, as care that is holistic and responsive to individual needs. PCC is associated with better patient satisfaction and improved clinical outcomes. Current conceptualizations of PCC are mainly from Europe and North America. This systematic review summarises the perceived dimensions of PCC among patients and healthcare workers within hospitals in sub-Saharan Africa (SSA). METHODS: Without date restrictions, searches were done on databases of the Web of Science, Cochrane Library, PubMed, Embase, Global Health, and grey literature, from their inception up to 11th August 2022. Only qualitative studies exploring dimensions or perceptions of PCC among patients, doctors and/or nurses in hospitals in (SSA) were included. Review articles and editorials were excluded. Two independent reviewers screened titles and abstracts, and conducted full-text reviews with conflicts resolved by a third reviewer. The CASP (critical appraisal skills program) checklist was utilised to assess the quality of included studies. The framework synthesis method was employed for data synthesis. RESULTS: 5507 articles were retrieved. Thirty-eight studies met the inclusion criteria, of which 17 were in the specialty of obstetrics, while the rest were spread across different fields. The perceived dimensions reported in the studies included privacy and confidentiality, communication, shared decision making, dignity and respect, continuity of care, access to care, adequate infrastructure and empowerment. Separate analysis of patients' and providers' perspective revealed a difference in the practical understanding of shared-decision making. These dimensions were summarised into a framework consisting of patient-as-person, access to care, and integrated care. CONCLUSION: The conceptualization of PCC within SSA was largely similar to findings from other parts of the world, although with a stronger emphasis on access to care. In SSA, both relational and structural aspects of care were significant elements of PCC. Healthcare providers mostly perceived structural aspects such as infrastructure as key dimensions of PCC. TRIAL REGISTRATION: PROSPERO Registration number CRD42021238411.

Thinking and Enacting the Patient Medical Home Under Pandemic Conditions: A Qualitative Study From Primary Care in Alberta, Canada.

BACKGROUND: The COVID-19 (C19) pandemic shocked primary care systems around the world. Those systems responded by supporting patients in the community, and acute care facilities in crisis. In Canada, the Patient Medical Home (PMH) is a widely adopted care model that aims to operationalize the tenets and principles of Primary Health Care (PHC) as developed since the Alma-Ata Declaration. This paper describes how personnel working in and with Primary Care Networks (PCNs) in Alberta, Canada deployed the PMH model and its underlying PHC principles to frame and respond to the C19 shock. METHODS: Using purposive and snowball sampling techniques, we interviewed 57 participants who worked in public health and primary care, including community-based family physicians. We used interpretive description to analyze the interviews. RESULTS: PCN staff and physicians described how the PMH model was foundational to normal operations, and how C19 responses were framed by the patient-centric, team-delivered, and continuous care principles the model shares with PHC. Specifically, participants described ensuring access to care, addressing the social determinants of health, being patient centered, and redeploying and expanding PHC teams to accomplish these goals. DISCUSSION: Delivering PHC through the PMH allowed physicians and allied health staff to deliver patient-centered, team-based, holistic bio-medical services to Albertans. In tailoring services to meet the specific social and health needs of the populations served by each PCN, healthcare providers were able to ensure relevant support remained available and accessible.

Refugee women's and providers' perceptions of person-centered maternity care: a qualitative study in two refugee camps in Chad.

BACKGROUND: Globally, mistreatment of women during labor and delivery is a common human rights violation. Person-centered maternity care (PCMC), a critical component of quality of care, is respectful and responsive to an individual's needs and preferences. Factors related to poor PCMC are often exacerbated in humanitarian settings. METHODS: We conducted a qualitative study to understand Sudanese refugee women's experiences, including their perceptions of quality of care, during labor and delivery at the maternities in two refugee camps in eastern Chad, as well as maternity health workers' perceptions of PCMC and how they could be better supported to provide this. In-depth interviews were conducted individually with 22 women who delivered in the camp maternities and five trained midwives working in the two maternities; and in six dyads with a total of 11 Sudanese refugee traditional birth attendants and one assistant midwife. In addition, facility assessments were conducted at each maternity to determine their capacity to provide PCMC. RESULTS: Overall, women reported positive experiences in the camp maternities during labor and delivery. Providers overwhelmingly defined respectful care as patient-centered and respect as being something fundamental to their role as health workers. While very few reported incidents of disrespect between providers and patients in the maternity, resource constraints, including overwork of the providers and overcrowding, resulted in some women feeling neglected. CONCLUSIONS: Despite providers' commitment to offering person-centered care and women's generally positive experiences in this study, one of few that explored PCMC in a refugee camp, conflict and displacement exacerbates the conditions that contribute to mistreatment during labor and delivery. Good PCMC requires organizational emphasis and support, including adequate working conditions and ensuring suitable resources so health workers can effectively perform.

Nurses' experiences of integrating the salutogenic perspective with person-centered care for older people in Swedish nursing home care: an interview-based qualitative study.

BACKGROUND: Even though there has been a cultural change within residential aged care to a more person-centered care, there remain improvements to be made for a more consistent way of working. Using a salutogenic approach along with person-centered care is a potential way to promote it. This study aimed to describe nurses' experiences of combining person-centered care with a salutogenic approach at a nursing home for older people. METHODS: Nine nurses, specially trained in salutogenesis and Sense of coherence, were individually interviewed using a semi-structured interview approach. Data was analysed through qualitative content analysis. RESULTS: The nurses experienced that the residential aged care was improved by using salutogenesis and Sense of coherence as a complement to person-centered care. Core aspects of person-centered care were thereby promoted, as the resources of the older persons were emphasized, and aged care became more holistic. In addition to improved residential aged care, the results indicate that this manner of working also contributed to enhanced work satisfaction of the care personnel themselves. CONCLUSIONS: The results suggest that a salutogenic approach facilitates the implementation of person-centered care by focusing on the older persons' resources and maintaining health. The organization needs to prioritize training staff in salutogenesis and person-centered care, as it supports working toward a common goal and benefits both the older persons and the staff.

Physicians, know thy patient.

Person-centered care is presently the standard healthcare model, which emphases shared clinical decision-making, patient autonomy and empowerment. However, many aspects of the modern-day clinical practice such as the increased reliance on medical technologies, artificial intelligence, and teleconsultation have significantly altered the quality of patient-physician communications. Moreover, many countries are facing an aging population with longer life expectancies but increasingly complex medical comorbidities, which, coupled with medical subspecialization and competing health systems, often lead to fragmentation of clinical care. In this article, I discuss what it truly means for a clinician to know a patient, which is, in fact, a highly intricate skill that is necessary to meet the high bar of person-centered care. I suggest that this can be achieved through the implementation of a holistic biopsychosocial model of clinical consultation at the physician level and fostering coordinated and continuity of care at the health systems level.

Oncology Nurses' Experiences of Using Health Information Systems in the Delivery of Cancer Care in a Range of Care Settings: A Systematic Integrative Review.

OBJECTIVES: This systematic review aimed to identify oncology nurses' experiences of using health information systems (HIS) in the delivery of cancer care. DATA SOURCES: The electronic databases searched included CINAHL, MEDLINE (EBSCO host), SCOPUS, Web of Science Core Collection, Google Scholar, OVID, and ProQuest Central (using advanced search strategy) and hand searching of reference lists of the included articles and relevant systematic reviews. Studies published in English language were examined. CONCLUSION: Twenty-six studies were included. Three themes emerged: (1) the transparency and application of the nursing process within HIS, (2) HIS enhancing and facilitating communication between nurses and patients, and (3) the impact of HIS on the elements of person-centered care. Nurses' experiences with HIS were overall positive. However, digital systems do not fully capture all elements of the nursing processes; this was confirmed in this review, through the nurses' lens. Most studies used HIS for symptom reporting and monitoring within non-inpatient settings and largely biomedical and lack insight into the person-centeredness and overall holistic care. IMPLICATIONS FOR NURSING PRACTICE: There are evidently varied views of HIS adoption across the globe. HIS can improve health-related quality of life and symptom burden, including self-reporting of symptoms among patients. However, there is a need for ongoing high-quality research, and clearer reporting than is evident in the current 26 studies, to fully understand the impact of HIS within the nursing processes and patient outcomes across all specialty cancer fields.

Level of Family centered care and associated factors among parents of children with cancer at tertiary level hospital, Ethiopia.

OBJECTIVE: To determining level and factors affecting Family Centered Care (FCC) in pediatric oncology unit of Tikur Anbessa Specialized hospital (TASH), Ethiopia. METHOD: A cross sectional study was conducted from June to December 2022. Three hundred ninety-three parents of children with cancer were consecutively interviewed using Measure of Processes of Care (MPOC-20). Multivariable linear regression was used to identify independent predictors of FCC. RESULT: The total MPOC 20 means was 3.71(SD = 1.04). The mean score for respectful and supportive care, coordinated and comprehensive care, enabling and partnership, providing specific information and providing general information were found to be 4.8, 4.6, 3.7, 2.3 and 2.6, respectively. Family employment (-0.33(95% CI = -0.63, -0.03; P = .029)), low family education (-0.40 (95% CI = -0.70, -0.11; P = .008)), referral cases (-0.37(95% CI = -0.59, -0.14; P = .001)), shorter time spent in hospital (-0.49(95% CI = -0.85, -0.12; P = .010)) and psychological distress (-0.01(95% CI = -0.026, -0.001; P = .028)) were associated with lower mean score of FCC. CONCLUSION: The total FCC mean score was found to be low. From the five FCC components providing general and specific information scored the lowest mean level. PRACTICE IMPLICATIONS: Mechanism to improve information delivery that address parents from different background and referred from other health facility should be in place in order to improve FCC level. In addition, the FCC should be designed to address parents of children with different lengths of stay.

A holistic approach to fragile X syndrome integrated guidance for person-centred care.

BACKGROUND: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). METHODS: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first-hand experience of clinicians who have worked with those living with FXS over many years. RESULTS: The article scopes proposed integrated guidance over the life course, including appendices of symptoms, comorbidities and referral options for FXS and Fragile X Premutation Associated Conditions. CONCLUSION: Integrated guidance would provide an authoritative source for doctors, health professionals, therapists, care workers, social workers, educators, employers, families and those living with FXS, so that a holistic, person-centred approach can be taken across the United Kingdom to garner the best outcomes for those with FXS.

Staff perspectives on the feasibility of the person-centered care assessment tool (PCC-at) in HIV treatment settings in Ghana: a mixed-methods study.

Person-centered care (PCC) aims to improve client's experiences in HIV care while advancing outcomes. This study team developed the PCC assessment tool (PCC-AT) to assess PCC service performance in HIV treatment settings in Ghana. Study objectives aimed to describe the range of PCC-AT scores within and across study facilities and examine the feasibility of PCC-AT implementation in diverse HIV treatment settings. The PCC-AT was piloted at five health facilities providing HIV services among 37 staff. Immediately following each pilot, focus group discussions (FGDs) were conducted to gather feasibility data. Thematic qualitative analysis was conducted on translated FGD transcripts. Across facilities, providers scored highest in the staffing domain, followed by service provision, and direct client support. Time required to implement the PCC-AT averaged 62 minutes. Providers described the tool as well-structured, user-friendly, relevant, reflective of the core PCC delivery elements, and useful in elucidating actions to improve PCC service delivery across domains. The PCC-AT holds potential to strengthen activities that support clients' broader clinical, mental and psychosocial wellbeing by offering friendly services that attend to each client's holistic needs while contributing progress towards epidemic control.

Management of Anemia in Renal Palliative Care Clinic: A Patient-Centered Approach.

BACKGROUND: Despite the growing needs in nondialytic alternatives for conservative kidney management, few studies have examined the management of anemia in palliative care (PC) outpatient clinics, which represent the key point of entry for timely access to PC. OBJECTIVE: A retrospective study to review for a patient-centered approach in anemia management and symptom control. RESULTS: Over the study period from July 2020 to March 2023, a total of 158 patients were seen at our renal PC clinic, 47 were included in data analysis. Patients had a mean age and glomerular filtration rate of 81.3 (9.5) years and 8.6 (5.3) mL/min/1.73 m2, and 68.1% and 44.7% were receiving erythropoiesis-stimulating agents (ESAs) and iron supplements respectively, with only 4.3% of patients required transfusion over past six months. Mean hemoglobin was maintained at 9.8 (1.4) g/dL, with a mean POS-S renal score of 4.7 (3.2). Majority of patients (93.6%) had satisfactory rating on "weakness and lack of energy" item. CONCLUSION: A patient-centered approach in anemia management at renal PC outpatient clinics may alleviate symptom burden and minimize transfusion requirement.

Nurse managers' perceptions of patient-centred care and its influence on quality nursing care and nurse job satisfaction: Empirical research qualitative.

AIM: To explore nurse managers' perceptions of patient-centered care (PCC), its influence on quality nursing care, nurse job satisfaction, and to provide baseline data for a context-driven PCC model. DESIGN: The study utilized a qualitative, phenomenological design, employing individual in-depth interviews to collect data on nurse managers' PCC perceptions until data saturation. METHODS: Sampling involved purposive selection of Northern Ghana, random selection of the tertiary hospital cluster with the three participating hospitals, and purposive sampling of the nine nurse managers. Data analysis employed thematic analysis based on a six-phase framework. Methodological trustworthiness was ensured through various strategies including prolonged engagement, supervisor discussions and crosschecking with interviewees. RESULTS: Three main themes emerged from the study including nurse managers' conceptualization of PCC, perceived patient-centred practices and its influence on nursing quality and job satisfaction. The findings emphasized the patient's individuality, cultural values, holistic care, the importance of strong nurse-patient relationships and a patient-centric environment. The nurse managers perceived PCC as positively influencing quality nursing care and nurse job satisfaction. The findings offer nuanced insights into nurse managers' perspectives on patient-centeredness and highlight areas for improvement.

Exploring the implementation of person-centred care in nursing practice.

Person-centred care involves nurses working in partnership with patients to ensure their needs and preferences are at the centre of their healthcare, as well as considering the biographical and social factors that are relevant to the person's health. This aims to support patients in developing the knowledge, confidence and skills to make informed decisions about treatment and to manage their own care where possible. This article discusses the concept of person-centred care and considers some of the facilitators and barriers that may affect its implementation in healthcare practice. It also explores some of the approaches that nurses can use to support person-centred care, such as cultural humility and role modelling.

Improving patient-centered care for HIV and mental illness: exploring hospital and community integration through education.

Current models of care delivery are failing patients with complexity, like those living with HIV, mental illness and other psychosocial challenges. These patients often require resource-intensive personalized care across hospital and community settings, but available supports can be fragmented and challenging to access and navigate. To improve this, the authors created a program to enhance integrated, trauma-informed care through an innovative educational role for a HIV community caseworker embedded in an academic HIV Psychiatry clinic, called the Mental Health Clinical Fellowship. Through qualitative interviews with 21 participants (patients, physicians, clinicians and Mental Health Clinical Fellows) from October 2020-March 2023, the authors explore how implementation of this program affects patient experiences and satisfaction with care. Patients described their care experiences as less stigmatizing, more accessible, holistic and coordinated. They often attributed this to the integration between fellow and psychiatrist, and specifically the accessible stance of community organizations embedded within a hospital, which helped build trust. Interchangeable and integrated support by caseworker and psychiatrist improved patient engagement in psychiatric management and patient satisfaction with their care. Cross-context and cross-disciplinary care provision that includes providers from community and hospital working directly together to deliver care can improve care for patients with significant complexity.

Receiving person-centred care in a hospital-A qualitative study of socially marginalised patients' experiences of social nursing.

BACKGROUND: Socially marginalised people are at a substantially increased risk of diseases and typically have several contacts with the healthcare system. Health professionals at hospitals often lack the knowledge, skills, confidence, and time to provide relevant care for socially marginalised patients. Danish hospitals have implemented a social nursing initiative consisting of social nurses with specialised knowledge about marginalisation to support socially marginalised patients. Limited research into patients' perceptions of social nursing has been undertaken. OBJECTIVE: To explore patients' experiences with the in-hospital social nursing initiative. DESIGN: A qualitative study was conducted using a phenomenological hermeneutical approach. SETTING: Odense University Hospital, Denmark. PARTICIPANTS: Patients aged 18 years and older who had been in contact with a social nurse during hospital admission were purposely sampled. Data saturation was reached when 15 participants were recruited. METHODS: In-depth patient interviews were conducted from November 2021 to April 2022 using a semi-structured interview guide. The interviews were transcribed verbatim and analysed using systematic text condensation. NVivo 12 software was employed for the analysis. Patient representatives were involved to validate the analysis and interpretations. RESULTS: Three themes were identified: (1) an equal and trusting relationship, (2) receiving person-centred care, and (3) coherence in the patient trajectory. The results show that when patients have established a relationship with a social nurse, they are willing to let her into their lives and share personal information. Patients also experience person-centred care and coherence in their trajectory when a social nurse participated in their treatment and care. CONCLUSION: The findings indicate that the social nursing initiative bridges the gap between socially marginalised patients and healthcare services.

Accountability in healthcare in the Netherlands: A scoping review.

For better serving people's complex needs the subsequent movement to person-centred integrated care, requires inter-organisational cooperation and service provision by domain-overarching networks and alliances. In the development to these networks, it is relevant to explore which accountability approaches are appropriate for local inter-organisational healthcare governance. Therefore, in a scoping review we studied the current state of knowledge and practice of accountability in healthcare in the Netherlands. We found that two of the included 41 studies show characteristics of accountability towards healthcare with characteristics of integration care components, such as integration of services with accompanying accountability arrangements and development of networked accountability. The first studies are found in the literature which report on accountability in integrated care. With this we add to the international discussion about accountability as an aspect of integrated care governance, by providing insight into the current state of art of accountability in Dutch healthcare.

Understanding the needs and preferences for cancer care among First Nations people: An integrative review.

AIM: This systematic review aimed to identify the needs and preferences for cancer care services among Australian First Nations people. DESIGN: Integrative review. DATA SOURCES: An integrative review was conducted. A wide range of search terms were used to increase the sensitivity and specificity of the searches in electronic databases. Methodological quality assessment, data extraction, was conducted independently by two reviewers, and a narrative synthesis was conducted. RESULTS: Forty-two studies were included. A total of 2965 Australian First Nations adults, both men and women of various ages across the lifespan, were represented; no First Nations children affected by cancer were represented in the studies. Three themes emerged which included: (1) discrimination, racism and trauma, resulting from colonization, directly impacted First National people's cancer care experience; (2) cultural ways of knowing, being and doing are fundamental to how First Nations people engage with cancer care services; and (3) First Nations people need culturally safe person-centred cancer care services that address practical needs. CONCLUSION: Most participants represented in this review experienced discrimination, racism and trauma, resulting from colonization, which directly negatively impacted Aboriginal peoples' cancer care experience. While the Optimal Cancer Pathway (OCP) was launched in Australia several years ago, people with cancer may continue to experience distressing unmet care needs. PATIENT OR PUBLIC CONTRIBUTION: Our team includes both First Nations people, non-First Nations researchers and healthcare professionals with expertise in cancer care. The researchers employed decolonizing restorative approaches to ensure voice, respect, accountability and reciprocity in this review work. IMPLICATIONS FOR NURSING PRACTICE: Members of the multidisciplinary team including nurses and policymakers should reflect on these findings, ensure that they have up-to-date cultural safety training and stand together with Indigenous and non-Indigenous cancer leaders to take proactive steps to stamp out and dismantle oppression in health, and safely implement the OCP.