Barriers and enablers to people-centred viral hepatitis care in Vietnam and the Philippines: Results of a patient journey mapping study.

In Vietnam and the Philippines, viral hepatitis is the leading cause of cirrhosis and liver cancer. This study aims to understand the barriers and enablers of people receiving care for hepatitis B and C to support both countries' efforts to eliminate viral hepatitis as a public health threat by 2030. Retrospective, semi-structured interviews were conducted with a purposive, quota-based sample of 63 people living with hepatitis B or C in one province of Vietnam and one region of the Philippines. A rapid deductive approach to thematic analysis produced key findings among the three phases of care: (1) pre-awareness and testing, (2) linkage and treatment initiation and (3) ongoing treatment and recovery. The research found that participants followed five typical journeys, from a variety of entry points. Barriers during the pre-awareness and testing phase included limited awareness about hepatitis and its management, stigma and psychological impacts. Enablers included being familiar with the health system and/or patients benefiting from social connections within the health systems. During the linkage and treatment initiation phase, barriers included difficult physical access, complex navigation and inadequate counselling. In this phase, family support emerged as a critical enabler. During the ongoing treatment and recovery phase, the cost of care and socially and culturally informed perceptions of the disease and medication use were both barriers and enablers. Exploring peoples' journeys with hepatitis B and C in Vietnam and the Philippines revealed many similarities despite the different cultural and health system contexts. Insights from this study may help generate a contextualized, people-centred evidence base to inform the design and improvement of primary care services for hepatitis in both research sites.

Whakawhanaungatanga-Building trust and connections: A qualitative study indigenous Maori patients and whanau (extended family network) hospital experiences.

AIMS: Investigated the experiences of Maori (the Indigenous peoples of Aotearoa, New Zealand) patients and whanau (extended family network) engaging with acute hospital inpatient services and their priorities for a Maori-centred model of relational care. DESIGN: A qualitative Maori-centred research design using a Thought Space Wananga (learning through in-depth group discussion, deliberation and consideration) approach. METHODS: Two wananga were conducted between May 2022 and June 2022, with 13 Maori patients who had been acutely hospitalized within the past 12 months and their whanau members. The first wananga utilized storytelling and journey mapping to collect data. The second wananga refined the initial themes. Wananga were audio-recorded and then inductively coded and developed into themes. RESULTS: Thirteen patients and whanau attended the first wananga, while 10 patients and whanau participated in the second wananga). Four themes were developed: (1) Whakawhanaungatanga (establishing connections and relationships), (2) Whakamana (uplifting the status and esteem of Maori), (3) Whakawhitiwhiti korero (the importance of communicating, discussing and deliberating) and (4) Kotahitanga (working together with purpose) all provide insights into the importance of effectively engaging and connecting with Maori patients and whanau when acutely hospitalized. CONCLUSIONS: The experiences and priorities of Maori patients and whanau affirm the international literature, suggesting that Indigenous relational concepts are critical to building relationships, connections and trust. Despite existing healthcare models for working with Indigenous peoples, their poor application contributes to sub-optimal healthcare experiences at all points of their healthcare journey. A relational mode of practice focused on engagement and forming connections better meets the needs of Indigenous peoples engaging with inpatient health services. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Despite the existence of Indigenous models of care, Indigenous peoples consistently report a lack of engagement and connection when accessing inpatient health services. Without establishing relationships, applying models of care is challenging. IMPACT (ADDRESSING): What problem did the study address? Internationally, healthcare systems are consistently ill-equipped to deliver culturally safe care for Indigenous and marginalized peoples, evident in ongoing health inequities. Like other reports of Indigenous experiences of health services, Maori express dissatisfaction with care delivery in an acute inpatient setting. This study investigated Maori patients and whanau experiences engaging with acute hospital inpatient services and their priorities for a Maori-centred model of relational care. What were the main findings? Maori patients and whanau recounted negative experiences with healthcare professionals lacking effective relationships and trust. Satisfaction occurred when engagement with health care professionals resembled Indigenous cultural rituals of encounter that considered their holistic, collective and dynamic worldviews. Previous models of relational care, while helpful, are not Indigenous and so do not address their needs, such as engagement as a mode of practice (how) to achieve this. Where and on whom will the research have an impact? This research impacts Indigenous peoples' health outcomes, particularly Maori, and nurses and clinicians working and interacting within acute inpatient and other hospital settings. Indigenous research methods support co-constructing knowledge for translation into practical outcomes through transformational practices, policies and theory development. REPORTING METHOD: We used the Consolidated Criteria for Strengthening the Reporting of Health Research Involving Indigenous Peoples (CONSIDER) statement (see File S2-CONSIDER Checklist) and the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (see File S3-COREQ Checklist). PATIENT OR PUBLIC CONTRIBUTION: Maori patients and their whanau interviewed about their experiences were involved in data interpretation.

Understanding equitable and affirming communication moments and relationship milestones during the intensive care unit journey: findings from stage 1 of a design thinking project.

PURPOSE: Communication is vital to facilitate patient and family-centred care (PFCC) and to build trusting relationships between intensive care unit (ICU) health care providers, the patient, and their loved ones in the ICU. The focus of this investigation was to identify, define, and refine key moments of communication, connection, and relationship building in the ICU through a lens of Equity, Diversity, Decolonization, and Inclusion (EDDI) to encourage meaningful communication and development of trusting relationships. METHODS: We conducted 13 journey mapping interviews with ICU health care providers, patients, and their loved ones as the first stage in a design thinking project. We used directed content analysis to identify intersections where principles of EDDI directly or indirectly impacted communication, relationships, and trust throughout the ICU journey. To serve diverse patients and their loved ones, accessibility, inclusivity, and cultural safety were foundational pillars of the design thinking project. RESULTS: Thirteen ICU health care providers, patients, and their loved ones participated in journey mapping interviews. We defined and refined 16 communication moments and relationship milestones in the journey of a patient through the ICU (e.g., admission, crises, stabilization, discharge), and intersections where EDDI directly or indirectly impacted communication and connection during the ICU journey. CONCLUSION: Our findings highlight that diverse intersectional identities impact communication moments and relationship milestones during an ICU journey. To fully embrace a paradigm of PFCC, consideration should be given to creating an affirming and safe space for patients and their loved ones in the ICU.

RéSUMé: OBJECTIF : La communication est essentielle pour faciliter les soins axés sur la patientèle et la famille et pour établir des relations de confiance entre les prestataires de soins de santé de l'unité de soins intensifs (USI), la patientèle, et ses proches à l'USI. L'objectif de cette enquête était d'identifier, de définir et de peaufiner les moments clés de communication, de connexion et de création de relation aux soins intensifs sous l'angle de l'équité, de la diversité, de l'inclusion et de la décolonisation (EDID) afin d'encourager une communication profonde et la création de relations de confiance. MéTHODE: Nous avons mené 13 entretiens de cartographie du parcours avec des prestataires de soins et des patient·es de l'USI ainsi qu'avec leurs proches dans le cadre de la première étape d'un projet de réflexion conceptuelle. Nous avons utilisé l'analyse de contenu dirigée pour identifier les intersections où les principes de l'EDID ont eu un impact direct ou indirect sur la communication, les relations et la confiance tout au long du parcours aux soins intensifs. L'accessibilité, l'inclusivité et la sécurité culturelle ont constitué des piliers fondamentaux du projet de réflexion conceptuelle pour desservir une patientèle diverse et ses proches. RéSULTATS: Treize prestataires de soins et patient·es de l'USI et leurs proches ont participé à des entrevues de cartographie du parcours. Nous avons défini et affiné 16 moments de communication et jalons de la relation dans le parcours d'un·e patient·e à l'USI (p. ex. admission, crises, stabilisation, congé) et les intersections où l'EDID a eu une incidence directe ou indirecte sur la communication et la connexion pendant le parcours aux soins intensifs. CONCLUSION: Nos résultats soulignent que les diverses identités intersectionnelles ont un impact sur les moments de communication et les jalons de la relation lors d'une trajectoire aux soins intensifs. Pour adopter pleinement un paradigme de soins axés sur la patientèle et sa famille, il faudrait envisager de créer un espace d'affirmation et de sécurité pour les patient·es et leurs proches à l'unité de soins intensifs.

The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping.

BACKGROUND: Care transitions have a significant impact on patient health outcomes and care experience. However, there is limited research on how clients receiving care in the home care sector experience the hospital-to-home transition. An essential strategy for improving client care and experience is through client engagement efforts. The study's aim was to provide insight into the care transition experiences and perspectives of home care clients and caregivers of those receiving home care who experienced a hospital admission and returned to home care services by thematically and illustratively mapping their collective journey. METHODS: This study applied a qualitative descriptive exploratory design using a patient journey mapping approach. Home care clients and their caregivers with a recent experience of a hospital discharge back to the community were recruited. A conventional inductive approach to analysis enabled the identification of categories and a collective patient journey map. Follow-up interviews supported the validation of the map. RESULTS: Seven participants (five clients and two caregivers) participated in 11 interviews. Participants contributed to the production of a collective journey map and the following four categories and themes: (1) Touchpoints as interactions with the health system; Life is changing; (2) Pain points as barriers in the health system: Sensing nobody is listening and Trying to find a good fit; (3) Facilitators to positive care transitions: Developing relationships and gaining some continuity and Trying to advocate, and (4) Emotional impact: Having only so much emotional capacity. CONCLUSIONS: The patient journey map enabled a collective illustration of the care transition depicted in touchpoints, pain points, enablers, and feelings experienced by home care recipients and their caregivers. Patient journey mapping offers an opportunity to acknowledge home care clients and their caregivers as critical to quality care delivery across the continuum.

Reporting and conducting patient journey mapping research in healthcare: A scoping review.

AIM: To identify how patient journey mapping is being undertaken and reported. DESIGN: A scoping review of the literature was undertaken using JBI guidance. DATA SOURCES: Databases were searched in July 2021 (16th-21st), including Ovid's Medline, Embase, Emcare and PsycINFO; Scopus; Web of Science Core Collection, the Directory of Open Access Journals; Informit and; ProQuest Dissertations and Theses Global. REVIEW METHODS: Eligible articles included peer-reviewed literature documenting journey mapping methodologies and studies conducted in healthcare services. Reviewers used Covidence to screen titles and abstracts of located sources, and to screen full-text articles. A table was used to extract data and synthesize results. RESULTS: Eighty-one articles were included. An acceleration of patient journey mapping research was observed, with 76.5% (n = 62) of articles published since 2015. Diverse mapping approaches were identified. Reporting of studies was inconsistent and largely non-adherent with relevant, established reporting guidelines. CONCLUSION: Patient journey mapping is a relatively novel approach for understanding patient experiences and is increasingly being adopted. There is variation in process details reported. Considerations for improving reporting standards are provided. IMPACT: Patient journey mapping is a rapidly growing approach for better understanding how people enter, experience and exit health services. This type of methodology has significant potential to inform new, patient centred models of care and facilitate clinicians, patients and health professionals to better understand gaps and strategies in health services. The synthesised results of this review alert researchers to options available for journey mapping research and provide preliminary guidance for elevating reporting quality.

Patient journey mapping to investigate quality and cultural safety in burn care for Aboriginal and Torres Strait Islander children and families - development, application and implications.

BACKGROUND: Quality and safety in Australian healthcare is inequitably distributed, highlighted by gaps in the provision of quality care for Aboriginal and Torres Strait Islander children. Burns have potential for long-term adverse outcomes, and quality care, including culturally safe care, is critical to recovery. This study aimed to develop and apply an Aboriginal Patient Journey Mapping (APJM) tool to investigate the quality of healthcare systems for burn care with Aboriginal and Torres Strait Islander children. STUDY DESIGN: Interface research methodology, using biomedical and cultural evidence, informed the modification of an existing APJM tool. The tool was then applied to the journey of one family accessing a paediatric tertiary burn care site. Data were collected through yarning with the family, case note review and clinician interviews. Data were analysed using Emden's core story and thematic analysis methods. Reflexivity informed consideration of the implications of the APJM tool, including its effectiveness and efficiency in eliciting information about quality and cultural safety. RESULTS: Through application of a modified APJM tool, gaps in quality care for Aboriginal and Torres Strait Islander children and families were identified at the individual, service and system levels. Engagement in innovative methodology incorporating more than biomedical standards of care, uncovered critical information about the experiences of culturally safe care in complex patient journeys. CONCLUSION: Based on our application of the tool, APJM can identify and evaluate specific aspects of culturally safe care as experienced by Aboriginal and Torres Strait Islander peoples and be used for quality improvement.

Journey mapping as a novel approach to healthcare: a qualitative mixed methods study in palliative care.

BACKGROUND: Journey mapping involves the creation of visual narrative timelines depicting the multidimensional relationship between a consumer and a service. The use of journey maps in medical research is a novel and innovative approach to understanding patient healthcare encounters. OBJECTIVES: To determine possible applications of journey mapping in medical research and the clinical setting. Specialist palliative care services were selected as the model to evaluate this paradigm, as there are numerous evidence gaps and inconsistencies in the delivery of care that may be addressed using this tool. METHODS: A purposive convenience sample of specialist palliative care providers from the Supportive and Palliative Care unit of a major Australian tertiary health service were invited to evaluate journey maps illustrating the final year of life of inpatient palliative care patients. Sixteen maps were purposively selected from a sample of 104 consecutive patients. This study utilised a qualitative mixed-methods approach, incorporating a modified Delphi technique and thematic analysis in an online questionnaire. RESULTS: Our thematic and Delphi analyses were congruent, with consensus findings consistent with emerging themes. Journey maps provided a holistic patient-centred perspective of care that characterised healthcare interactions within a longitudinal trajectory. Through these journey maps, participants were able to identify barriers to effective palliative care and opportunities to improve care delivery by observing patterns of patient function and healthcare encounters over multiple settings. CONCLUSIONS: This unique qualitative study noted many promising applications of the journey mapping suitable for extrapolation outside of the palliative care setting as a review and audit tool, or a mechanism for providing proactive patient-centred care. This is particularly significant as machine learning and big data is increasingly applied to healthcare.

A Mixed-Methods Study of Users' Journey Mapping Experience and Acceptance of Telehealthcare Technology in Taiwan.

Background: The integration of telehealthcare technologies into geriatric care has clear advantages, but poses challenges for key stakeholders, including the telehealthcare service industry, smart device developers, marketers and, of course, users. The purpose of this study was to gain insight into user experience and acceptance of telehealthcare technology in Taiwan. Materials and Methods: Taking an integrated mixed-methods approach, 51 participants-33 women (64.71%) and 18 men (35.29%) (mean age: 52.1 years)-were examined before, during, and after using a telehealthcare device. A questionnaire was used to assess users' acceptance of the technology. Interviews were conducted to gather feedback. Results: The quantitative analysis revealed that (1) effort expectancy and relatives significantly influenced users' behavior intentions, (2) error and memorability significantly affected users' satisfaction, and (3) intention and satisfaction significantly affected users' behavior. The qualitative analysis revealed two key implications. First, participants generally were not satisfied with the telehealthcare device. Second, participants suggested the redesign of the telehealthcare device to reduce operating errors and time consumption to meet users' needs. Conclusions: Contemporary telehealthcare devices do not meet users' needs. Participants were made to adapt to the equipment rather than the equipment tailored to meet their needs. Although there were key benefits from home telehealthcare, the systems require enhanced technology, improved usability, and an expanded scale of services backed by government before widespread implementation can successfully proceed.

Understanding Experiences of Caregivers of Spouses With Dementia During Caregiver Health Care Emergencies.

BACKGROUND AND OBJECTIVES: Caregivers of persons with dementia are frequently spouses. Caregiver hospitalization causes disruption to caregiving. The goal of this research was to understand the preparedness and stress trajectory of peri-caregiver hospitalization. RESEARCH DESIGN AND METHODS: Mixed methods were used. Caregivers of spouses with dementia (n = 1,000) were surveyed to determine their perceived preparedness for their own hospitalization. Journey mapping interviews (n = 18) were used to map caregivers' experiences during 5 phases: (a) their spouse with dementia (SWD)'s dementia diagnosis; (b) their SWD's dementia progression; (c) their own health event; (d) their own hospitalization; and (e) their own return home from the hospital. RESULTS: Among the 452 (45%) eligible caregiver survey respondents, 75 (17%) had experienced hospitalization in the previous 12 months and 51 (68%) hospitalizations were unexpected. Twenty-three (31%) of hospitalized caregivers indicated they did not have prior plans in place for the care of the SWD. When asked about an unexpected hospitalization in the future, 233 (52%) felt somewhat prepared and 133 (29%) felt not at all prepared. Journey mapping revealed 3 groups of caregivers: Group 1 (n = 7) rated their stress lower during their hospitalization, Group 2 (n = 7) rated their stress highest during their hospitalization, and Group 3 (n = 4) were at a sustained high-stress level. DISCUSSION AND IMPLICATIONS: Many caregivers are not prepared for their own hospitalization. The stress trajectory through important phases of dementia caregiving and a caregiver's own hospitalization is not universal. Meeting the needs of caregivers' peri-hospitalization should be tailored to the individual caregiver.

Patient journey mapping: emerging methods for understanding and improving patient experiences of health systems and services.

Patient journey mapping is an emerging field of research that uses various methods to map and report evidence relating to patient experiences and interactions with healthcare providers, services, and systems. This research often involves the development of visual, narrative, and descriptive maps or tables, which describe patient journeys and transitions into, through, and out of health services. This methods corner paper presents an overview of how patient journey mapping has been conducted within the health sector, providing cardiovascular examples. It introduces six key steps for conducting patient journey mapping and describes the opportunities and benefits of using patient journey mapping and future implications of using this approach.