Person-centered Healthcare Research Articles

Integrated care in the Baltic states over a 5-year period: progress, challenges and future directions

Abstract Person-centered, multidisciplinary care is key to addressing evolving complex health needs. In Estonia, Latvia, and Lithuania, this pursuit of integrated care has gained momentum as an innovative approach to allocate resources more efficiently and improve patient outcomes. This study investigates the progress of integrating care in the Baltic countries from 2019 to 2024. It details key learnings, particularly for small European countries with limited resources. The Health Systems and Policy Monitor Network of the European Observatory on Health Systems and Policies undertook a cross-country study to better understand the progress in care integration in the Baltics. The Network’s Baltic country experts completed a 21-item questionnaire on the adoption of integrated care reforms. Responses were analyzed to capture reform characteristics and commonalities, countries’ political environments and their conduciveness to the uptake of integrated care. Country-specific experiences with the implementation of integrated care were further explored via case studies of pilot programs over the five years. The pace of implementing integrating care reforms varied in each country. Existing regulatory barriers, workforce challenges and payment schemes have impeded integration efforts across health and social care. Despite these obstacles, the political commitment to new and innovative service delivery and collaboration for chronic care management underscores an important prerequisite toward achieving more integrated and person-centered healthcare. The three case studies illustrate the hurdles that come with shifting care settings and expanding roles for some workers. Findings stress the role for integrated care to address organisational challenges in the Baltics. This study highlights innovative approaches and long-running efforts to provide multidisciplinary care for complex-needs patients and the implications of their results for broader health system adoption. Key messages • Small countries like the Baltics face structural challenges in integrating care to improve outcomes and efficiency. • Investment and innovative care approaches are key to further advancements.

Healthcare leadership practice and associated factors among primary healthcare managers in East Gojam Zone, Northwest Ethiopia: a mixed method study

BackgroundLeadership plays a critical role in the delivery of person centered, safe, efficient, and effective healthcare services globally. Poor healthcare leadership contributes to low staff motivation, patient dissatisfaction, and reduced healthcare-seeking behavior. However, there is limited evidence on healthcare leadership practice and associated factors among primary healthcare managers in the study area and at large in Ethiopia. Therefore, the findings of this study will contribute to improved healthcare leadership practices among primary healthcare managers.MethodFacility-based cross-sectional study supplemented with qualitative inquiry was conducted in the East Gojam zone among 532 primary healthcare managers selected by a two-stage stratified random sampling technique. A pre-tested and structured self-administered questionnaire was used to collect the quantitative data. Data were entered into Epi-Data version 4.6 and exported into Stata version 14.0 for analysis. Multiple linear regression analysis was used to identify factors associated with healthcare leadership practice, and statistical significance was declared at a p-value < 0.05 with a 95% CI. Six key informant interviews were conducted, and thematic analysis was used for the qualitative study.ResultThe magnitude of healthcare leadership practice among primary healthcare managers in the East Gojam zone was 45.7% (95% CI: (41.4, 50.0)). Factors associated with healthcare leadership practice were age [β = 0.44, 95% CI: (0.16, 0.71)], training in healthcare leadership practice [β = 1.19, 95% CI: (0.19, 2.20)], experience sharing [β = 1.68, 95% CI: (0.59, 2.76)], organizational communication [β = 0.19, 95% CI: (0.05, 0.33)], managerial working experience [β = 0.94, 95% CI: (0.18, 1.69)] and emotional intelligence [β = 0.35, 95% CI: (0.31, 0.38)].Conclusion and recommendationThe magnitude of healthcare leadership practice among primary healthcare managers in the East Gojam zone was low as compared with a previous study in Ethiopia. It was significantly associated with age, training in leadership, experience sharing, organizational communication, managerial working experience, and emotional intelligence. Thus, human resource managers at primary healthcare level should consider older and more experienced candidates during assigning managers, organize training on healthcare leadership and experience sharing with model managers to improve the leadership practice of primary healthcare managers in the East Gojam zone.

Enactivism: a contemporary perspective of a reconceptualization of Osteopathy

Enactivism is a philosophical and scientific approach that emphasizes the role of the body and its interactions with the environment in shaping cognitive processes and subjective experiences. Meanwhile, osteopathy is a person-centered health care discipline, highlighting the structure-function interrelationship of the body and its selfregulation mechanisms. Both approaches value the body and the environment in health. Several authors have been discussing the urgent need for a reconceptualization of osteopathy and also suggesting integrate biological, psychological and social aspects. Thinking osteopathy as a Therapeutic Rationality, implies recognize its fundamental dimensions: Human Morphology, Vital Dynamics, Medical Doctrine, Diagnostic System and Therapeutic System, all integrated by a philosophical Cosmology, as the original term Medical rationality states, but also embrace a broader perspective allowing an individual and unique process of each person, reflecting the transformation of contemporary medicine to a person approach. Enactivism principles can serve as a basis for a reconceptualization of osteopathy, integrating environmental, psychological, social, and spiritual factors. Osteopathic concepts can probably be updated through the convergence between enactivism and osteopathy, promoting more meaningful and evidence-based clinical practice. Advancing in this direction requires a collaborative dialogue between researchers, health professionals and interested people, seeking an integrated understanding of the relationship between body, mind, environment and health.

Centring children's lived experiences in understanding the importance of play in hospitals.

Children have a right to participate in matters affecting their lives. With increasing regularity, children's perspectives are being sought regarding their health and health care experiences. Though there is evidence that children find play to be one of the 'best' aspects of hospitalisation, studies rarely focus on children's perspectives on play in hospital. This qualitative study explored children's lived experiences of play during hospitalisation. Over five months, ethnographic observations were conducted on a paediatric oncology ward as well as interviews with 16 children ages 3-13 years. Using interpretative phenomenological analysis, children's expressions and experiences illuminated three key points: safety and comfort are integral to children feeling able to play in hospital; the value and efficacy of play is decided by children; and that play is a way for patients to be (and be treated as) children first. Hospitals can only be child-friendly if children find them friendly. Listening to and integrating children's perspectives in the discourse around the importance of play in hospital is essential for respecting children's rights and delivering person-centred paediatric healthcare.

Operationalizing and digitizing person-centered daily functioning: a case for functionomics

An ever-increasing amount of data on a person’s daily functioning is being collected, which holds information to revolutionize person-centered healthcare. However, the full potential of data on daily functioning cannot yet be exploited as it is mostly stored in an unstructured and inaccessible manner. The integration of these data, and thereby expedited knowledge discovery, is possible by the introduction of functionomics as a complementary ‘omics’ initiative, embracing the advances in data science. Functionomics is the study of high-throughput data on a person’s daily functioning, that can be operationalized with the International Classification of Functioning, Disability and Health (ICF).A prerequisite for making functionomics operational are the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. This paper illustrates a step by step application of the FAIR principles for making functionomics data machine readable and accessible, under strictly certified conditions, in a practical example. Establishing more FAIR functionomics data repositories, analyzed using a federated data infrastructure, enables new knowledge generation to improve health and person-centered healthcare. Together, as one allied health and healthcare research community, we need to consider to take up the here proposed methods.

Repurposing Sewage and Toilet Systems: Environmental, Public Health, and Person-Centered Healthcare Applications.

Global terrestrial water supplies are rapidly depleting due to the consequences of climate change. Water scarcity results in an inevitable compromise of safe hygiene and sanitation practices, leading to the transmission of water-borne infectious diseases, and the preventable deaths of over 800.000 people each year. Moreover, almost 500 million people lack access to toilets and sanitation systems. Ecosystems are estimated to be contaminated by 6.2 million tons of nitrogenous products from human wastewater management practices. It is therefore imperative to transform toilet and sewage systems to promote equitable access to water and sanitation, improve public health, conserve water, and protect ecosystems. Here, the integration of emerging technologies in toilet and sewage networks to repurpose toilet and wastewater systems is reviewed. Potential applications of these systems to develop sustainable solutions to environmental challenges, promote public health, and advance person-centered healthcare are discussed.

The development and structural validity testing of the Person-centred Practice Inventory-Care (PCPI-C).

Person-centred healthcare focuses on placing the beliefs and values of service users at the centre of decision-making and creating the context for practitioners to do this effectively. Measuring the outcomes arising from person-centred practices is complex and challenging and often adopts multiple perspectives and approaches. Few measurement frameworks are grounded in an explicit person-centred theoretical framework. In the study reported in this paper, the aim was to develop a valid and reliable instrument to measure the experience of person-centred care by service users (patients)-The Person-centred Practice Inventory-Care (PCPI-C). Based on the 'person-centred processes' construct of an established Person-centred Practice Framework (PCPF), a service user instrument was developed to complement existing instruments informed by the same theoretical framework-the PCPF. An exploratory sequential mixed methods design was used to construct and test the instrument, working with international partners and service users in Scotland, Northern Ireland, Australia and Austria. A three-phase approach was adopted to the development and testing of the PCPI-C: Phase 1 -Item Selection: following an iterative process a list of 20 items were agreed upon by the research team for use in phase 2 of the project; Phase 2 -Instrument Development and Refinement: Development of the PCPI-C was undertaken through two stages. Stage 1 involved three sequential rounds of data collection using focus groups in Scotland, Australia and Northern Ireland; Stage 2 involved distributing the instrument to members of a global community of practice for person-centred practice for review and feedback, as well as refinement and translation through one: one interviews in Austria. Phase 3: Testing Structural Validity of the PCPI-C: A sample of 452 participants participated in this phase of the study. Service users participating in existing cancer research in the UK, Malta, Poland and Portugal, as well as care homes research in Austria completed the draft PCPI-C. Data were collected over a 14month period (January 2021-March 2022). Descriptive and measures of dispersion statistics were generated for all items to help inform subsequent analysis. Confirmatory factor analysis was conducted using maximum likelihood robust extraction testing of the 5-factor model of the PCPI-C. The testing of the PCPI-C resulted in a final 18 item instrument. The results demonstrate that the PCPI-C is a psychometrically sound instrument, supporting a five-factor model that examines the service user's perspective of what constitutes person-centred care. This new instrument is generic in nature and so can be used to evaluate how person-centredness is perceived by service users in different healthcare contexts and at different levels of an organisation. Thus, it brings a service user perspective to an organisation-wide evaluation framework.

The Quality in Quality of Life in Parkinson's Disease: A Qualitative Meta-Synthesis.

Quality of life (QoL) is known to be impaired in people with Parkinson's disease (PwPD). Not surprisingly, a considerable effort of health interventions is aimed at maintaining or improving QoL. Yet, little is known about its determinants from a PwPD perspective to inform person-centered health care interventions. This systematic review aims to overcome this information gap by synthesizing existing evidence on factors associated with PwPD' self-perceived QoL. We searched six electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Web of Science, Cochrane Library) from inception to January 2022 for eligible qualitative studies of QoL in PwPD, supplemented by citation tracking and hand searching. Study quality was assessed using the QualSyst tool. In order to characterize the determinants of QoL in PwPD, we conducted a qualitative meta-synthesis. Our analysis revealed a wide range of facilitators and barriers to QoL relating to seven overarching themes: Illness experience, health care, everyday life, social life, identity, spirituality/religion, and environment. Our systematic review reinforces the impact of symptom experience on PwPD's QoL. However, it also highlights the need to consider the non-physical dimensions of PD when assessing patients' QoL. It is therefore essential that health care professionals acknowledge the psychological, social and spiritual repercussions of PD and endeavor to respond to these concerns through a comprehensive and patient-centered strategy. Further research is needed to gain a deeper understanding of these facets of PD and to formulate successful interventions aimed at improving the QoL of PwPD.

Home Care Workers Providing Person-Centered Care to People With Dementia.

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative's person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client's personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home.

Older adults preferences for long-term caregivers in China: a discrete choice experiment

ObjectiveUnderstanding the preferences of old-age adults for their long-term caregivers can improve person-centred health care and the quality of long-term care (LTC). This study examines Chinese older adults’ preferences for long-term caregivers. Study designThis is a cross-sectional study. MethodsA national representative discrete choice experiment (DCE) surveyed 2031 adults aged 50–70 across 12 provinces in China. Each DCE scenario described five attributes: type of caregivers, place of LTC, contents of LTC, out-of-pocket payments, and quality of life (QoL). Preferences and the marginal willingness to pay (WTP) were derived using mixed-logit and latent class models. ResultsOlder adults displayed higher preferences for long-term caregivers who improve their QoL, incur lower out-of-pocket payments, and provide medical LTC services at home, with the maximum WTP of $22.832 per month. QoL was rated as the most important LTC factor, followed by the place of LTC and the type of caregivers. When the level of QoL improved from poor to good, respondents would be willing to pay $18.375 per month more (95% confidence interval: 16.858 to 20.137), and the uptake rate increased by 76.47%. There was preference heterogeneity among older people with different sex, education, family size, and knowledge of LTC insurance. ConclusionQoL was the most important factor in older Chinese adults' preference for caregivers. Home care and medical care from formal caregivers was preferred by older adults. We recommend training family caregivers, raising older people's awareness of LTC insurance, and guiding policymakers in developing people-oriented LTC and a multi-level LTC system.

Towards person-centred work-focused healthcare for people with cardiovascular disease: a qualitative exploration of patients’ experiences and needs

Purpose To explore the experiences and needs concerning work-focused healthcare of patients experiencing problems with work participation due to cardiovascular disease based on all facets of person-centred care. Methods Nineteen patients who experienced or continue to experience problems with work participation due to cardiovascular disease participated in semi-structured interviews preceded by preparatory written assignments. The transcripts were analysed by means of directed qualitative content analysis. Adapted principles of the Picker Institute for Person-Centred Care provided a template for the analysis. Results 28 experiences and needs emerged and were grouped into the eight principles for person-centred work-focused healthcare. Randomly presenting one theme for each of the eight principles, the themes included: (1) frequent encounters with occupational healthcare professionals; (2) substantive work-related advice; (3) transparency in communication; (4) support for family; (5) information provision on the work-focused healthcare process; (6) personal control during the process; (7) empathy for the personal situation; and (8) tailored work-focused support. Conclusions The identified experiences and needs for work-focused healthcare of patients experiencing problems with work participation due to cardiovascular disease clearly indicate the need to improve the delivery of person-centred work-focused healthcare to better meet the individual needs of patients.

A Structured Template for Social Work Psychosocial Assessments and Formulations in Healthcare

ABSTRACT Previously, substantial inconsistencies existed in relation to social work documentation in medical records across Queensland Health. A structured, adaptable social work psychosocial assessment template, developed for use across Queensland Health, is introduced in this article. This template comprises six title headings and encompasses nine psychosocial domains. Importantly, a “Care Needs and Choice” domain encouraged promotion of the “patient voice”, while a Clinical Formulation section and matrix encouraged analysis and assessment of the presenting situation as conceptualised through the social work lens. We propose that, together with AASW guidelines and resources (e.g., AASW Practice Standards, 2023), utilisation of this template can help social workers articulate their professional identity and demonstrate their unique contributions to holistic, person-centred psychosocial healthcare. IMPLICATIONS A structured adaptable template can assist social workers to document psychosocial assessments in the medical record. Use of this template can help demonstrate the professional scope of social work practice and social workers’ unique contributions to person-centred care. The template promotes consideration and documentation of the “patient voice”, and the Formulation matrix encourages critical thinking and analysis to inform social work interventions.

Aging in Place and ‘The Little Things’: Prioritizing Mobile Health and Social Care in Rural Communities

ABSTRACT Older adults are more frequently wanting to age in place. Governments are seeking cost-effective and efficient methods of supporting aging populations. Older adults who want to stay in their homes for as long as possible encounter multiple barriers, including struggling to maintain their homes, inadequate levels of social and healthcare support, and the lack of financial capacity to pay for home support services. The Mobile Seniors’ Wellness Network (MSWN), a multi-disciplinary and person-centered mobile health and social support intervention study was designed to investigate and support aging in place for older adults living in rural New Brunswick, Canada. Secondary analysis of case notes and exit interviews using content analysis revealed concerns with the lack of affordable and mobile care services for vulnerable rural older adults. Older adults revealed that their needs include “the little things” rather than grand gestures or sweeping policies to age in place such as assistance with grounds and home maintenance, in addition to relational and person-centered health and social care in the home. Reliance on private service delivery and volunteer organizations can increase the likelihood that older adults will experience a breakdown of social support networks tied together loosely by friends, family, and their communities. When services are unattainable aging in place becomes an unreachable goal.

Factors influencing interprofessional collaboration in long-term care from a multidisciplinary perspective: a case study approach

ABSTRACT Systematic assessments of interprofessional collaboration barriers and enablers in long-term care settings are critical for delivering person-centered healthcare. However, research on factors influencing interprofessional collaboration in long-term care settings is limited. For this study, 65 healthcare professionals across multiple facilities experienced in long-term care in Japan participated in online focus group discussions and individual interviews to discuss cases. The qualitative data were analyzed using qualitative content analysis. Seven themes emerged: coordination, the need for care manager training, hierarchy among healthcare professionals, specialization but not the mind-set of overspecialization, casual conversations, electronic group communication tools, and excessive fear of personal information protection. These findings highlight the need to develop coordinator roles and for interprofessional education on the proper approach to personal information protection laws. Furthermore, daily casual conversations, the use of online platforms, and the prevention of patients being left behind due to overspecialization are required.

Improving Healthcare Quality and Clinical Outcomes for Persons with Dementia in the Sub-Acute Hospital Through Person-Centered Care Practice.

Person-centered care is considered beneficial for persons with dementia. To evaluate the impact of a person-centered knowledge translation intervention on the quality of healthcare and outcomes for persons with dementia. Over nine months, sub-acute hospital nursing, allied health, and medical staff (n = 90) participated in online and/or face-to-face person-centered education and were supported by senior nursing, allied health, and medical staff champions (n = 8) to implement person-centered healthcare. The quality of healthcare service, ward climate and care delivery were evaluated pre/post study intervention. In the week following hospital admission (Time 1) and week of discharge (Time 3), agitation incidence (co-primary outcome) was assessed in participants with dementia (n = 80). Participant delirium (co-primary outcome), accidents/injuries, psychotropic medicines, length of stay, readmission and discharge destination (secondary outcomes) were compared with a retrospective group (n = 77) matched on demographics, cognition and function in activities of daily living. Improvements occurred post-intervention in service quality by 17.5% (p = 0.369, phi = 0.08), ward climate by 18.1% (p = 0.291, phi = 0.08), and care quality by 50% (p = 0.000, phi = 0.37). Participant agitation did not change from Time 1 to Time 3 (p = 0.223). Relative to the retrospective group, significant reductions occurred in participant delirium (p = 0.000, phi = 0.73), incidents/injuries (p = 0.000, phi = 0.99), psychotropic medicine use (p = 0.030, phi = 0.09), and hospital readmissions within 30 days (p = 0.002, phi = 0.25), but not in discharge to home (p = 0.171). When person-centered healthcare knowledge is translated through staff education and practice support, persons with dementia can experience improved healthcare services and clinical outcomes, while healthcare services can benefit through reductions in unplanned service use.

British Models of Person Centered Medicine

Background: The National Health Service (NHS) was established in 1948 as a publicly funded healthcare system in the UK providing universal health coverage that is comprehensive, equitable and free at the point of delivery. The British experience of person centered medicine (PCM) is enshrined in the NHS constitution. Objectives: The objective of this study was to highlight important developments in and evolution of PCM within the NHS in person-centered care (PCC), research and innovations in undergraduate and graduate health education. Methods: This is a narrative overview of the British experience of PCM. Results: It is evident that the British experience and practice of PCM have evolved naturistically over seven decades since the establishment of the NHS. Academic research groups in collaboration with the NHS have introduced person-centered models of care supported by pivotal research in practice. Importantly, person-centered nursing has been widely adopted following the early development of a framework for person-centered nursing and its extensive evaluation. There emerged many initiatives on PCM by National Voices, the Health Foundation, British medical schools and the Royal Medical Colleges. The landmark development was the production by the Royal College of Psychiatrists in the UK of the first blueprint for a postgraduate psychiatric curriculum that is in tune with person-centered psychiatry. Conclusions: It is envisaged that the NHS will evolve and increasingly promote, adopt, codesign and implement PCC approaches adapted to the local, regional and national contexts including services redesign, health education and applied health research. These innovations contribute to the universal development of person-centered healthcare and health education.

#NavigatingHealth - Building a Global Movement Empowering Patients to Navigate Health Systems

Background: Whilst health reports talk about health systems shifts from reactive “one size fits all” to proactive personalised health care, the current reality is that health systems are challenging for patients and carers to navigate. Patients frequently experience gaps and barriers in healthcare. We talk about patient-centred care, but we do not have patient centred systems. The challenges are not new and patient navigation was extensively research by Professor Harold Freeman in the US over 30 years ago. &#x0D; Audience: This presentation is for a multidisciplinary audience of patients, health professionals, policy managers and politicians focused on enabling patient-centred at a systems level. &#x0D; Who did you involve and engage with? What was the approach and process undertaken? &#x0D; Patients, professionals and policy makers in Australia and globally have been involved in what started as a national Community of Practice in Australia “Mind the Gap: #NavigatingHealth”. &#x0D; The approach was tested for audience interest with a series of two webinars in September 2021 to set the scene of navigating health across a life journey of patient and provider experiences with a solutions focused approach on how to tackle the many challenges.&#x0D; Following the success and interest of the webinars and as part of a focused advocacy and change management approach we developed a bimonthly Community of Practice. This is open to all those in Australia. Our focus in the first year was to make visible the many solutions being developed to support patients and to develop an engaged participatory community and build connection. &#x0D; Further to the success in the first year, we have now expanded the approach at a global level running our first global webinar in November 2022 with speakers from Australia, the United States of America, Canada and the United Kingdom providing a connected approach across a life journey. This included lived experience of patients as well as presentations from non-governmental, medical and government organisations interweaving micro, meso and macro approaches (for example included American Cancer Society, NHS England). &#x0D; What is the learning for the international audience? Problems that patients face navigating health systems in countries are common and consistent. Collaborating across disease and functional areas both within and across countries allows the opportunity to take a “big-picture” view to take a systems focused approach. This allows the solutions being developed to be coalesced at a systems level, remove duplication and leverage resources to benefit both patients, providers and policy makers to focus on a person-centred value-based healthcare approach across a life journey. &#x0D; What are the next steps? Our next steps are to consolidate the learnings and scale. Whilst our initial focus has been high income countries we will be expanding the approach in 2023 to low and middle income countries using the same methodology.

The effect of hospital volunteering on empathy in nursing and medical students

BackgroundEmpathic care benefits patients and healthcare providers. There is evidence of self-reported empathy decline among students in healthcare education. Hospital volunteering could assist undergraduate healthcare students to develop empathetic relationships with patients. AimThe study aimed to investigate the feasibility and effect of a hospital volunteering intervention on the empathy levels of undergraduate nursing and medical students. It further aimed to explore their experience of the intervention and determine student-identified areas for patient safety improvements. DesignPre–post-intervention study SettingA large outer metropolitan hospital in New South Wales, Australia. ParticipantsTwenty-nine (n = 29) undergraduate nursing and medical students from an Australian university. MethodsStudents had an introductory experience of volunteering at their local district hospital through participation in the ‘Volunteer Taster Program’. The Jefferson Scale of Empathy-Health Professions Student questionnaire was used to measure student empathy scores pre and post program. Responses to open-ended questions were thematically analysed to evaluate student experiences and identify student-reported areas for patient safety improvements. ResultsTwenty-nine students (18 nursing, 11 medical) completed the program. Students had statistically significant improvements in post-intervention mean empathy scores 112.03 (95% CI 107.56, 116.5) to 117.38 (95% CI 113.76, 121.00) p < 0.001. Subgroup analysis identified a larger increase in empathy scores among medical students than nursing students. The thematic analysis revealed potential program benefits, including new perspectives of the patient experience, improved confidence in patient communication, a stronger professional identity, and a rewarding experience. Identified patient safety issues included concerns for patients’ emotional and physical well-being, and patient communication. ConclusionsThe Volunteer Taster Program is feasible and enabled nursing and medical students to connect with patients outside the sphere of clinical education. It appears to increase empathy levels in undergraduate students and could assist them to deliver empathetic, person-centred healthcare.

Community perceptions of a biopsychosocial model of integrated care in the health center: the case of 4 health districts in South Kivu, Democratic Republic of Congo

SummaryBackgroundBiopsychosocial care is one of the approaches recommended in the health system by the WHO. Although efforts are being made on the provider side to implement it and integrate it into the health system, the community dynamic also remains to be taken into account for its support. The objective of this study is to understand the community's perceptions of the concept of integrated health care management according to the biopsychosocial approach (BPS) at the Health Center of a Health District and its evaluation in its implementation.MethodsThis cross-sectional study was done in six Health Areas belonging to four Health Districts in South Kivu, DRC. We conducted 15 semi-directive individual interviews with 9 respondents selected by convenience, including 6 members of the Development Committees of the Health Areas, with whom we conducted 12 interviews and 3 patients met in the health centers. The adapted Normalization MeAsure Development (NoMAD) tool, derived from the Theory of the Normalization Process of Complex Interventions, allowed us to collect data from November 2017 to February 2018, and then from November 2018 to February 2019. After data extraction and synthesis, we conducted a thematic analysis using the NoMAD tool to build a thematic framework. Six themes were grouped into three categories.ResultsInitially, community reports that the BPS approach of integrated care in the Health Centre is understood differently by providers; but then, through collective coordination and integrated leadership within the health care team, the approach becomes clearer. The community encouraged some practices identified as catalysts to help the approach, notably the development of financial autonomy and mutual support, to the detriment of those identified as barriers. According to the community, the BPS model has further strengthened the performance of health workers and should be expanded and sustained. ConclusionsThe results of our study show the importance of community dynamics in the care of biopsychosocial situations by providers. The barriers and catalysts to the mechanism, both community-based and professional, identified in our study should be considered in the process of integrating the biopsychosocial model of person-centered health care.

Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes

BackgroundDuring transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples’ needs, few validated instruments exist pinpointing adolescents’ and emerging adults’ experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes.MethodsInitial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n = 163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness.ResultsCombining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach’s alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach’s alpha approximated to 0.8 for all factors respectively.ConclusionTEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults’ experiences of preparation for transition and transfer.