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Introduction: In dementia care, the integration of innovative interventions is essential to enhancing the wellbeing and quality of life of people with dementia. Among these interventions, the Music Mirror intervention has emerged as a promising tool to provide personalized audio-biographical cues aimed at soothing, motivating, and engaging people with dementia. This study examined the effects of a Music Mirror intervention on the (a) wellbeing, emotions, and behavioral and psychological symptoms of 155 individuals with dementia, (b) perceived burden, relationship quality, and gains of their informal/formal caregivers, and (c) momentary closeness, wellbeing and stress of caregivers. Methods: This four-year study employed a quasi-experimental waiting-control group design, utilizing before-after measurements in Swiss hospitals, care homes, and domestic homes. For four 6-week intervention phases, Music Mirrors, i.e., brief written resources of acoustic material, associated with practical activities of daily life, were applied at least twice a week by the caregivers during critical moments such as staff handover. Repeated measures' analysis of variance and other tests were used to analyze the data. Results: Individuals with dementia had a higher wellbeing after the Music Mirror use across different care situations. While the Music Mirrors were played, individuals with dementia showed more positive than negative emotions at each measurement occasion, but emotion scores did not significantly change over time. After the MM use, caregivers felt better, closer to the person with dementia, and less stressed. Caregivers also reported significant gains at the end of the intervention. However, there were no significant changes in the frequency of the behavioral and psychological symptoms of dementia, care-related burden and relationship quality over time, regardless of the treatment condition. Discussion: By incorporating personalized audio-biographical cues into their care routines, the wellbeing of people with dementia was improved as well as it had positive momentary effects on their caregivers. The Music Mirror intervention addresses the preferences and needs of people with dementia and helps build bonds between care-recipients and caregivers. Therefore, Music Mirrors can be seen as a highly adaptive and individualized instrument to improve momentary wellbeing of people with dementia in various care situations during daily life.

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Mental health disorders affect a substantial portion of the global population. Despite preferences for psychotherapy, access remains limited due to various barriers. Digital mental health interventions (DMHIs) have emerged to increase accessibility, yet engagement and treatment completion rates are concerning. Evidence across healthcare where some degree of self-management is required show that treatment engagement is negatively influenced by contextual complexity. This article examines the non-random factors influencing patient engagement in digital and face-to-face psychological therapies. It reviews established models and introduces an adapted version of the Cumulative Complexity Model (CuCoM) as a framework for understanding engagement in the context of digital mental health. Theoretical models like the Fogg Behavior Model, Persuasive System Design, Self-Determination Theory, and Supportive Accountability aim to explain disengagement. However, none adequately consider these broader contextual factors and their complex interactions with personal characteristics, intervention requirements and technology features. We expand on these models by proposing an application of CuCoM's application in mental health and digital contexts (known as DiCuCoM), focusing on the interplay between patient burden, personal capacity, and treatment demands. Standardized DMHIs often fail to consider individual variations in burden and capacity, leading to engagement variation. DiCuCoM highlights the need for balancing patient workload with capacity to improve engagement. Factors such as life demands, burden of treatment, and personal capacity are examined for their influence on treatment adherence. The article proposes a person-centered approach to treatment, informed by models like CuCoM and Minimally Disruptive Medicine, emphasizing the need for mental healthcare systems to acknowledge and address the unique burdens and capacities of individuals. Strategies for enhancing engagement include assessing personal capacity, reducing treatment burden, and utilizing technology to predict and respond to disengagement. New interventions informed by such models could lead to better engagement and ultimately better outcomes.

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Chemotherapy poses both physical and psychological challenges for patients, prompting many to seek answers independently through online resources. This study investigates German Google search behavior regarding chemotherapy-related terms using Google AdWords data from September 2018 to September 2022 to gain insights into patient concerns and needs. A total of 1461 search terms associated with "chemotherapy" were identified, representing 1,749,312 to 28,958,400 search queries. These terms were categorized into four groups based on frequency and analyzed. Queries related to "adjuvant" and "neoadjuvant" chemotherapy, as well as "immunotherapy", suggest potential confusion among patients. Breast cancer emerged as the most searched tumor type, with hair loss, its management, and dermatological issues being the most searched side effects. These findings underscore the role of search engines such as Google in facilitating access to healthcare information and provide valuable insights into patient thoughts and needs. Healthcare providers can leverage this information to deliver patient-centric care and optimize treatment outcomes.

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OBJECTIVE: To understand in-facility follow-up care-seeking behavior among both people who self-managed medication abortions and those who obtained facility-managed care in low-and-middle-income countries. We explore factors that contribute to meeting individual self-reported follow-up care needs, core to person-centered care. STUDY DESIGN: We conducted a qualitative, codebook thematic analysis of 67 in-depth interviews conducted with people who self-managed medication abortions or obtained facility-managed medication abortion care. We first classified individuals as having their follow-up care needs met (not seeking care when the participant felt confident that additional care was not warranted or desired or receiving care if it was desired) or not. Our a priori analytic domains came from the Anderson model of health services utilization - predisposing, enabling, or need factors (perceived and evaluated need for health services) that contributed to having follow-up care needs met or not. We also describe emergent themes within each domain. RESULTS: Most participants (n=59, 88%) had their follow-up care needs met; half (n=33, 49%) sought follow-up care in a facility. Prior birth or abortion experiences emerged as predisposing factors for having follow-up care needs met. Having accompaniment support (from activists or hotlines who provide abortion guidance outside of clinical settings), knowing what to expect, and information sources were key enabling factors for having follow-up care needs met. Need factors included flexible follow-up care guidelines. Those who did not have their follow-up care needs met described predisposing negative health system experiences; enabling factors including health system challenges, stigma from providers, and legal risk; and need factors of required follow-up care guidelines. CONCLUSION: Medication abortion follow-up care experiences are diverse, and individual needs can be met both in and outside of health facilities. Understanding prior experiences, enabling accompaniment support, and considering flexible follow-up care guidelines can support meeting individual follow-up care needs, which is essential to person-centered abortion care.

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This position paper by the international IMMERSE consortium reviews the evidence of a digital mental health solution based on Experience Sampling Methodology (ESM) for advancing person-centered mental health care and outlines a research agenda for implementing innovative digital mental health tools into routine clinical practice. ESM is a structured diary technique recording real-time self-report data about the current mental state using a mobile application. We will review how ESM may contribute to (1) service user engagement and empowerment, (2) self-management and recovery, (3) goal direction in clinical assessment and management of care, and (4) shared decision-making. However, despite the evidence demonstrating the value of ESM-based approaches in enhancing person-centered mental health care, it is hardly integrated into clinical practice. Therefore, we propose a global research agenda for implementing ESM in routine mental health care addressing six key challenges: (1) the motivation and ability of service users to adhere to the ESM monitoring, reporting and feedback, (2) the motivation and competence of clinicians in routine healthcare delivery settings to integrate ESM in the workflow, (3) the technical requirements and (4) governance requirements for integrating these data in the clinical workflow, (5) the financial and competence related resources related to IT-infrastructure and clinician time, and (6) implementation studies that build the evidence-base. While focused on ESM, the research agenda holds broader implications for implementing digital innovations in mental health. This paper calls for a shift in focus from developing new digital interventions to overcoming implementation barriers, essential for achieving a true transformation toward person-centered care in mental health.

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BACKGROUND: Since legalization of Medical Assistance in Dying in Canada in 2016, nurses are increasingly faced with new and evolving communication challenges as patients in a diversity of settings and contexts contemplate their end-of-life options. PURPOSE: The purposes of this study were: 1) to develop an understanding of the nuances and challenges associated with MAID-related communication from the perspective of registered nurses, and 2) to draw on the insights arising from this analysis to reflect on the evolution of MAID communication for nurses over time. METHODS: This study represented a secondary analysis of two primary qualitative data sets, including: 74 interviews of Canadian registered nurses self-identifying as having some exposure to MAID in their clinical practice; and 47 narrative reflections volunteered by respondents to questions posed in an online MAID reflective guide for nurses. RESULTS: Nurses described evolving complexities associated with introducing and engaging with the topic of MAID with their patients, helping patients navigate access to MAID assessment, managing family and community dynamics associated with opinions and beliefs surrounding MAID, supporting patients in their planning toward a MAID death, and being there for patients and their families in the moment of MAID. CONCLUSIONS: MAID communication is highly complex, individualized, and context-specific. It is apparent that many nurses have developed an impressive degree of comfort and skill around navigating its nuances within a rapidly evolving legislative context. It is also apparent that dedicated basic and continuing MAID communication education will warranted for registered nurses in all health care settings.

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BACKGROUND: Person-centered care emphasizes the importance of valuing and supporting the humanness of a person living with dementia as compared to focusing heavily on disease symptom management and treatment. The state of the evidence and outcomes from person-centered care is unclear and is an important knowledge gap to address informed evidence-based care for persons living with dementia. AIMS: To synthesize the evidence on the efficacy of person-centered care in improving health outcomes in people living with dementia. METHODS: Our search using the following databases: Academic Search Complete, CINAHL, COCHRANE library, EMBASE, MEDLINE, PubMed, and Google Scholar. The methodology quality of the included studies was assessed using a revised Cochrane risk-of-bias tool for randomized trials. Meta-analyses were performed using the DerSimonian and Laird random effects model to investigate the effectiveness of person-centered care on improving health outcomes in persons living with dementia. RESULTS: Seventeen trials were included in this systematic review and meta-analysis. Person-centered care implementation was found to improve cognitive function (pooled SMD: 0.22; 9CRD420223808975% CI [0.04, 0.41], p = .02) in persons living with dementia, although outcomes including the impact of the care model on activities of daily living, agitation, depression, and quality of life remain inconclusive. LINKING EVIDENCE TO ACTION: Person-centered care improves the cognitive function of persons living with dementia, which is clinically meaningful and should not be ignored or overlooked in delivering evidence-based care to this population. The findings of this study emphasize the importance of person-centered care implementation among people living with dementia as an approach in improving health outcomes particularly on cognitive function improvement. Person-centered care emphasizes the personhood of individuals living with dementia while respecting their needs, values, and beliefs and is identified as a preferred model of delivering dementia care in all settings as a non-pharmacological approach.

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OBJECTIVES: This study assessed the readiness of The Individualized Positive Psychosocial Interaction (IPPI) program in the nursing home (NH) setting from the perspective of NH providers implementing the IPPI. The evidence-based IPPI program is designed to help remediate distress and improve mood for residents living with dementia. NH staff are trained to engage residents in brief (i.e. 10-min) one-to-one, preference-based activities to alleviate emotional distress and enhance quality of life. METHOD: NH providers (n = 15) who championed the IPPI implementation completed an exit interview based on the nine domains of the Readiness Assessment for Pragmatic Trials (RAPT). Interviews were audio-recorded, transcribed, and coded by RAPT domains, then scored by the research team to reflect an average for each domain. RESULTS: Providers rated the IPPI program's readiness high on the domains of alignment, impact, risk, implementation protocol, evidence, cost, and acceptability. The domains of measurement and feasibility scored lower, likely due to broader contextual issues and require particular attention. CONCLUSION: Results illustrate that the IPPI program successfully aligns with stakeholder priorities, is a safe intervention with minimal risk, and has beneficial outcomes. The IPPI's low cost, design, and alignment with organizational goals also facilitated implementation while measuring outcomes and staffing considerations impacted organizational capacity for implementation.

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BACKGROUND: The global population of older aged 65 and over is increasing, which means an increase in people living with long-term health conditions and multimorbidity. Implementing new digital health technologies enables increased patient empowerment and responsibility, and the ability to respond to changes in their condition themselves, with less involvement of healthcare professionals. Important parameters need to be addressed for this digitally enabled empowerment to be successful, these include increased individual and organizational health literacy, the establishment of joint decision-making activities among patients and healthcare professionals, and efforts that target the individual's ability to manage their condition, which include education to increase skills and providing technology for self-monitoring. OBJECTIVE: To identify needed competencies of digital healthcare professionals to be able to provide the needed services to service users with chronic obstructive pulmonary disease in a 24/7 digital healthcare service. METHOD: Five registered nurses' work was observed weekly for five months. In total 13 participatory observations were conducted. Data from the observations was transcribed and analysed through inductive content analysis. RESULTS: Five main categories were identified in the analysis; 1) tasks, 2) communication, 3) the relationships between the registered nurses, 4) service users, and 5) technology. These categories contain different competencies needed for registered nurses working in a digitalized healthcare system. CONCLUSIONS: Future digital healthcare professionals will require several competencies, to be able to deliver proper care in a digital health community that goes beyond traditional healthcare competencies, including social, technological, and communication skills.

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Understanding the housing needs of older adults is crucial for policy makers, service providers, and professional carers. Evidence about the factors that contribute to older adults' "sense of home" and their practical and policies implications are lacking. Semi-structured interviews were conducted with 78 community-dwelling older adults to investigate which structural and organizational requirements and relational-affective environments could contribute to their experiencing a sense of home. Through inductive content analysis 119 subcategories were derived and grouped into eight main categories: being considered as a person; a safe, quiet, welcoming, and personalizable environment; meaningful relationships; optional and stimulating activities; active involvement in the organization within the facility; competent care personnel; preserving life memories; facility open and integrated with the community. Findings suggest that multiple factors might influence "feeling at home," and many strategies can be adopted to facilitate older adults' successful adaptation. It is important that healthcare organizations consider these factors from a person-centered care perspective, and that care staff are trained in this type of care to enhance staff decision-making and older adults' wellbeing.

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The spread of antimicrobial resistance is a global health concern, and resistance mediated by Extended-Spectrum Beta-Lactamases (ESBLs) can cause major consequences. The aim of this study was to explore individuals' perceptions of their daily life and how they cope after being diagnosed with carriage of ESBL-producing bacteria. A qualitative study was conducted with a descriptive design. Data were collected through individual interviews with 24 persons having ESBL carriership, via a semi-structured interview guide. The data were analyzed using qualitative content analysis. The informants' perceptions on "Living with uncertainty about carriership that impacts oneself and others" were interpreted. Experiences of altered behaviors and sentiments due to ESBL carriership were described, as ESBL carriership was perceived to have a psychosocial impact on many informants. Ambiguous and inconsistent information tended to exacerbate these perceptions. The results of this study emphasize the importance of conveying individualized information, both at the time of diagnosis of ESBL carriage and thereafter. This study was not registered.

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This study explores nursing students' perceptions of institutionalized elderly care, aiming to identify attitudes and biases that influence their academic and professional development in gerontological nursing. Conducted with 128 students across two campuses, this qualitative study utilized 15 focus groups for data collection. Five primary themes emerged through thematic and inductive analysis: Institutionalized Living, Stereotypes, Improvement Proposals, Exemplary Practices and Positive Observations and Educational Strategies and Person-centered Care Integration. Findings underscore the multifaceted nature of elderly long-term care settings, highlighting the prevalence of loneliness. Despite institutionalization's intent to mitigate loneliness, results suggest its effectiveness is variable, with a deficiency in social interaction opportunities. This underscores the imperative for comprehensive socialization programs. Additionally, integrating students into professional teams has been shown to foster positive interpersonal relationships significantly. Recommendations for enhancing care quality include personalizing living spaces, strengthening bonds between staff and residents, and enriching the nursing curriculum with advanced professional training.

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PURPOSE: To understand multidisciplinary healthcare clinicians' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners. METHODS: Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care. CONCLUSION: Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.

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BACKGROUND: Non-pharmacological interventions are considered the first-line treatment for managing the behavioral and psychological symptoms of dementia. Given the heterogeneous characteristics of these symptoms, which vary for each individual and tend to fluctuate, a symptom-specific approach is necessary for providing individualized non-pharmacological interventions for people with dementia. However, clear guidelines regarding the appropriate types of interventions for individual symptoms or clusters of behavioral and psychological symptoms of dementia are lacking. OBJECTIVES: The aim of this umbrella review was to summarize the current evidence on non-pharmacological interventions for behavioral and psychological symptoms of dementia and provide guidance for determining the appropriate types of interventions for each behavioral and psychological symptom of dementia. DESIGN: An umbrella review of systematic reviews and/or meta-analyses. METHODS: The Cochrane methodology for umbrella reviews was employed for this review, and the review protocol was registered. PubMed, CINAHL, Embase, PsycINFO, and Cochrane databases were searched for relevant reviews using the 'population, intervention, control, and outcomes' formulation. Two reviewers independently screened the extracted articles for eligibility. The quality of each selected review was independently assessed by the two reviewers using A Measurement Tool to Assess Systematic Reviews 2. The results were narratively synthesized and categorized according to each symptom. RESULTS: Thirty-five systematic reviews, 71 % of which were also meta-analyses, were included in this review. The methodologies employed in the included reviews were significantly heterogeneous. The qualities of the reviews ranged from low to moderate. Diverse types of non-pharmacological interventions were identified in the reviews, with music therapy being the most frequently discussed. Among the various symptoms, depression was most frequently addressed, followed by overall symptoms, agitation, anxiety, sleep problems, and apathy. Music therapy was found to be effective for improving both overall and specific symptoms, including depression and anxiety. Notably, relatively weak evidence supports the effectiveness of exercise in addressing each symptom. Aromatherapy could be considered for agitation, whereas reminiscence may be effective in managing overall and specific symptoms, such as depression. CONCLUSIONS: The results showed that the evidence of symptom-specific effectiveness of non-pharmacological interventions varied across the different behavioral and psychological symptoms of dementia, highlighting the need for a symptom-specific approach in future research. Furthermore, future research is needed to facilitate the development of symptom-specific guidelines that can enhance the quality of individualized dementia care. REGISTRATION: Registered with PROSPERO (number: CRD42022340930) on November 9, 2022.

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OBJECTIVES: To codesign safety-netting strategies for primary and emergency care settings by integrating the experiences and ideas of patients, carers and clinicians. DESIGN: A codesign process involving two focus group discussions, eight individual interviews and five workshops. All sessions were audio recorded and transcribed verbatim. Data were analysed using qualitative content analysis and reported using the Consolidated criteria for Reporting Qualitative research guidelines. SETTING: Primary and emergency care in Sweden, focusing on the Stockholm region. PARTICIPANTS: 7 (5 women) individuals with patient expertise, 1 (man) individual with carer expertise, 18 (12 women) individuals with clinical expertise. RESULTS: Three main categories reflecting strategies for applying safety-netting were developed: first, conveying safety-netting advice, which involves understanding patient concerns, tailoring communication and using appropriate modalities for communicating; second, ensuring common understanding, which involves summarising information, asking a teach-back question and anticipating questions post consultation; and third, supporting safety-netting behaviour, which involves facilitating reconsultation, helping patients and carers to navigate the health system and explaining the care context and its purpose. CONCLUSIONS: Our study highlights the collaborative nature of safety-netting, engaging both the clinician and patient, sometimes supported by carers, in an iterative process. Adding to previous research, our study also emphasises the importance of anticipating postconsultation inquiries and facilitating reconsultation.

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BACKGROUND: For more than a decade, the Patient-Centered Medical Home model has been a guiding vision for the modernization of primary care systems. In Canada, Ontario's Family Health Teams (FHTs) were designed in the mid-2000s with the medical home model in mind. These primary care clinics aim to provide accessible, comprehensive, and person-centered primary care services to communities across Ontario. Their services typically include mental health care for people experiencing common mental disorders, such as depression and anxiety disorders. It remains unclear, however, whether the mental health care delivered within FHTs is consistent with person-centered care approaches. In the current study, we aimed to explore the perspectives of FHT providers on the care delivered to people with common mental disorders to determine whether, and to what extent, they believed this care was person-centered. METHODS: We conducted a qualitative grounded theory study involving interviews with 65 health professionals and administrators from 18 FHTs across Ontario. Transcripts were coded using a three-step process of initial, focused, and axial coding that mixed inductive and deductive approaches informed by sensitizing concepts on person-centeredness. RESULTS: Practices and challenges associated with the delivery of mental health care in a person-centered way were captured by several themes regrouped into five domains: (1) patient as unique person, (2) patient-provider relationship, (3) sharing power and responsibility, (4) connecting to family and community, and (5) creating person-centered care environments. FHT providers perceived that they delivered person-centered care by delivering mental health care that was responsive, flexible, and consistent with biopsychosocial approaches. They emphasized the importance of creating long-lasting relationships with patients grounded in empathy and trust. Their challenges included being able to ensure continuity of care, adequately prioritizing patients' mental health issues, and meaningfully engaging patients and families as partners in care. CONCLUSIONS: Our findings suggest that FHT providers have adopted a range of person-centered practices for people with common mental disorders. However, greater attention to practices such as shared decision making, supporting self-management, and involving families in care would strengthen person-centeredness and bring teams closer to the Patient-Centered Medical Home vision.

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INTRODUCTION: This study examines the impact of COVID-19 on older adults in traditional nursing homes, Green Houses (GHs), and Continuing Care Retirement Communities-Nursing Homes (CCRCNHs). METHODS: COVID-19 cases and deaths from CMS and LTCFocus data across 11 states from 6/2020 to 9/2022 were used, and Poisson regressions to compare care settings while adjusting for covariates. RESULTS: CCRCNH and GH residents were older (84.4 and 83.1 years) than those in traditional NHs (77.5 and 77.6 years, p < 0.0001), with more female and White individuals. COVID-19 risk was higher in CCRCNHs (RR 1.51, 95 % CI 1.10-2.07), large NHs (RR 1.57, 95 % CI 1.14-2.15), and highest in small NHs (RR 1.80, 95 % CI 1.32-2.47). Mortality rates across NH types showed no significant difference. CONCLUSION: The study shows that smaller, person-centered GHs are more effective in controlling COVID-19 infection, suggesting a need to rethink care models to incorporating GH features for better outcomes. GEORGE2 07-AUG-2024 11:31.

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OBJECTIVES: In 2015, the Ohio Department of Medicaid incentivized use of the Preferences for Everyday Living Inventory (PELI) as a quality initiative. The pay-for-performance (P4P) program, however, was then deimplemented in 2019. This study investigated the sustainability of use of the PELI in Ohio nursing homes (NHs) from 2017 to 2021 and examined barriers to PELI implementation. DESIGN: This study analyzed 2 waves of Ohio Biennial Survey of Long-Term Care Facilities data. SETTING AND PARTICIPANTS: Data were drawn from 433 NHs in Ohio that reported on PELI implementation efforts between 2017 and 2021. METHODS: This study examined the change in proportion of NHs implementing the PELI (ie, conducted for all residents, used in care planning) and change in proportion of NHs using different PELI assessment formats (ie, the full 72-item PELI, MDS 3.0 Section F items only). Frequencies of reported barriers to PELI implementation by NH administrators were tabulated. RESULTS: Results indicate that although use of the full 72-item PELI decreased over time, only a small percentage discontinued its use despite possible impacts of P4P changes in 2019 and challenges posed by the COVID-19 pandemic. NHs adapted their PELI assessment formats likely in response to perceived barriers of PELI use (ie, length of the full PELI, time constraints, and residents' level of cognitive impairment). CONCLUSIONS AND IMPLICATIONS: Findings suggest that Ohio NHs sustained PELI implementation over time in the context of large systemic changes in P4P financial incentives and COVID-19 safeguards. Barriers were reported at the organizational level, yet NHs continued to prioritize PCC with the PELI. Policy/P4P mandates may serve as effective implementation incentives that encourage sustainability of quality care practices. Future research should explore long-term sustainability and stakeholder perspectives on PELI utilization.

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BACKGROUND: The concept of quality in health care has evolved, placing greater importance on the patient's needs, culture, and social context, as well as their participation in clinical decision-making, as highlighted by Mead and Bower's Person-Centered Care Model. The aim of the present study was to design and validate an instrument to assess the extent to which healthcare services provided by PEMEX (Petróleos Mexicanos) offer person-centered care according to user perceptions. METHODS: The first phase comprised the development of 57 items based on the analysis of responses from an open-ended questionnaire administered to 30 users of Pemex healthcare services. This questionnaire was designed considering the four factors of the person-centered care model, however, the high correlation between the 4 factors (i.e., r ≥ .80) indicated an overfactoring effect and consequently an increase in the risk of overfitting. Therefore, an exhaustive analysis of the instrument was performed, starting with the review of the individual behavior of each item, and carrying out exploratory and confirmatory factor analysis. Using a sample of 330 individuals, an exploratory factor analysis was perfomed. Afterward, a confirmatory factorial analysis was carried out with 335 participants. Finally, a new confirmatory factorial analysis included 130 participants due to the refinements made in the previous phase. Internal consistency was assessed using Cronbach's α and McDonald's ω at every phase. RESULTS: The exploratory factor analysis retained 35 items in a single factor that accounted for 49% of the variance with an internal consistency of Cronbach's α and McDonald's ω = 0.97. Because the factorial structure by confirmatory factorial analysis was unsatisfactory, the initial model was refined, leading to the retention of 11 items and a final model with adjustment index of χ2 = 127.53, χ2/gl = 2.89, RMSEA = 0.07, IC RMSEA 0.06 to 0.09, TLI = 0.95 and CFI = 0.96, with an internal consistency of Cronbach's α and McDonald's ω = 0.93. Due to the refinements, a new confirmatory factorial analysis was conducted with suitable goodness-of-fit criteria in most items (χ2 = 151.44, χ2/gl = 3.43, RMSEA = 0.13, IC RMSEA 0.11 to 0.16, TLI = 0.93 and CFI = 0.94), resulting in a Cronbach's α and McDonald's ω = 0.98. CONCLUSIONS: The instrument exhibits suitable psychometric properties to be employed to measure the degree to which medical care is patient centered. This instrument represents a strategy for promoting an innovative healthcare model.

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Primary progressive aphasia (PPA) is a neurodegenerative brain disorder characterized by declining language ability. It is a rare, often young-onset dementia with a devastating impact on the work and personal activities of those affected. At present there is no cure or disease-modifying therapy for PPA nor any way to arrest or slow the underlying progressive brain degeneration. Throughout the course of the condition any treatment must therefore be palliative-designed to manage symptoms and improve the quality of life of the affected person. The majority of those affected receive little or no follow-up care after diagnosis, particularly in the early stage of the disease. There is very little information in the medical literature about person-centered care designed to improve the quality of life of people with PPA written from the perspective of those living with this condition. I received an early and accurate clinical diagnosis of the nonfluent/agrammatic variant of PPA, supported by imaging. I am fortunate to have benefited from exemplary individualized care from a multidisciplinary medical team from the onset of my difficulties with language. In this paper, I discuss my lived experience of all aspects of this personalized and person-centered care, describing how it was founded on shared decision-making and a holistic, dementia-inclusive approach encompassing the physical, mental, emotional, psychosocial and spiritual dimensions of living with an incurable neurodegenerative disease.