Building a patient-centered model: Palliative medicine and cancer care.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 75-75
Author(s):  
Kavitha Ramchandran ◽  
Derek Galligan ◽  
Erika L Tribett ◽  
Melissa Valentine ◽  
Meryl Selig ◽  
...  

75 Background: Palliative medicine (PM) improves outcomes for cancer patients. Still, there is limited evidence around components of an efficient, patient-centered model for integrating PM into oncologic care. While PM is committed to aligning with a patient's goals of care, very few programs incorporate their input into design or evaluation. The aim of this project is to combine best practice in PM with perspectives of patients, families and providers to develop an empathic PM service. We hypothesize that collaboration with stakeholders and user experience experts will result in a feasible, impactful and translatable model of care that aligns with patient and family goals. Methods: We are conducting semi-structured interviews with 30 patients, family members and 30 oncologists. Patient interviews assess needs and coping mechanisms. Provider interviews assess perceptions and experiences around PM. We will conduct observations to understand how patients and providers interact and how current protocols are operationalized. Data will be coded and analyzed for major themes. An expert panel of patients, family members, health care providers and design experts will assimilate the data and make recommendations for the prototype care model design. The model will be piloted and evaluated in fall 2014. Outcome metrics include patient satisfaction, symptom management, utilization, mortality, and others identified during development. Data from the pilot will inform intervention improvements in preparation for a large-scale, 12- month pilot in an outpatient PM clinic. Results: Preliminary work includes the development of a novel patient and family interview protocol that integrates cutting-edge research on PM with best practices for conducting empathic interviews. We will present initial results from these interviews at the symposium, as well as our iterative design process. Conclusions: This project integrates data on patient and family experience with known best practices to develop a patient-centered model for palliative cancer care. The development process and potential outcomes hold significant promise for the design of patient and provider-centered care models, especially those related to chronic and serious illnesses.

2018 ◽  
Vol 23 (4) ◽  
pp. 252-261 ◽  
Author(s):  
Josje Kok ◽  
Ian Leistikow ◽  
Roland Bal

Objective There is growing recognition among health care providers and policy makers that when things go wrong, the patient or their families should be heard and participate in the incident investigation process. This paper explores how Dutch hospitals organize patient or family engagement in incident investigations, maps out incident investigators’ experiences of involving patients or their families in incident investigations and identifies the challenges encountered. Methods Semi-structured interviews were conducted with managers and incident investigators in 13 Dutch hospitals. Study participants (n = 18) were asked about the incident investigation routines and their experiences of involving affected patients or family members. Interview transcripts were coded and analysed using thematic content analysis. Results Our findings reveal that patient or family involvement in incident investigations is typically organized as a one-time interview event. Interviews with patients or their families were considered to be valuable and important in their own right and seen as a way to do justice to the individual needs of the patient or their family. Yet, the usefulness and validity of the patient or family perspective for incident investigations was often seen to be limited, with the professional perspective afforded more weight. This was particularly the case when the patient or their family were unable to provide verifiable details of the incident under investigation. Study participants described challenges when involving patients or family members, including in relation to the available timeframe for incident investigations, legal issues, managing trust and working with intense emotions. Conclusions We propose that by placing patient and family criteria of significance at the centre of incident investigations (i.e. an ‘emic’ research approach), hospitals may be able to expand their learning potential and improve patient-centeredness following an incident.


2021 ◽  
pp. 001789692110615
Author(s):  
Nancy Bedingfield ◽  
Bonnie Lashewicz ◽  
Dina Fisher ◽  
Kathryn King-Shier

Objective: In low tuberculosis (TB) incidence countries, linguistic and cultural dissonance between families experiencing infectious TB and TB health care providers is a barrier to effective communication and successful treatment. The purpose of this research was to explore infectious TB education and counselling from the perspective of patients and family members who are foreign-born. Design/Setting: One component of a multiphase, qualitative case study conducted in Calgary, a large city in western Canada. Method: Data were collected through semi-structured interviews, chart review and field notes and analysed thematically. Eight families were represented in the 6 patient and 13 family member participants who had recently experienced infectious TB. Results: Three themes were generated from the data: ‘learning about TB from many sources’, ‘reassurance and connection’ and ‘missing information’. Participants described learning about TB in different ways, feeling reassured once they knew more and sharing information with others. Overall, participants expressed satisfaction with education and counselling received. However, there were indications that communication problems had occurred. Participants asked questions during the interview, described areas of lingering confusion and shared TB-related behaviours incongruent with medical understanding. Knowledge gaps often increased isolation. Conclusion: Gaps in infectious TB education and counselling have negative impacts on patient and family member well-being. Education and counselling can be improved using multiple modes of communication, proactively addressing common misperceptions and reducing barriers to patient participation. Improvements could empower families to better manage their own experience and share accurate TB information with their communities.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18544-e18544
Author(s):  
Nfn Scout ◽  
Michelle ED Veras ◽  
Bethany Andrews Rhoten ◽  
Reece ED Lyerly ◽  
Aurea ED Kasberg ◽  
...  

e18544 Background: Cultural barriers that inhibit LGBTQ cancer care are a public health crisis. Although LGBTQ cultural competency trainings are rapidly becoming the norm, patient-centered information is lacking for healthcare professionals in cancer care. The purpose of OUT: The National Cancer Survey is to understand the experiences of LGBTQ cancer survivors in order to make cancer care a safer and more welcoming place for survivors and their support teams. Methods: Individuals age 18 or older currently living in the United States who have been previously diagnosed with cancer and who identify as LGBTQ+ were recruited via community partnerships and targeted paid social media advertisements with an oversample of media outreach to Black Indigenous and People of Color (BIPOC). Participants completed a cross-sectional web-based survey of their cancer care experiences. This resulted in a final sample of [1,600+] survivors, the largest known sample of LGBTQ+ cancer survivors in the world. The sample was weighted to adjust for U.S. sex assigned at birth and racial/ethnic demographics. Descriptive statistics were used to summarize participant responses, crosstabs were used to compare responses across demographic categories, and excerpted responses are used to highlight qualitative themes. Results: Participants ranged in age from X to X years (median X). X% of the sample identified as either gay or lesbian, X% as bi, and X% as trans or gender nonconforming. X% of the sample identified as White only, followed by X% as Latine, X% as Black and X% as other or mixed race. Most common cancer types included XYZ. When asked about welcoming care, X% of the sample reported they specifically sought an LGBTQ+ welcoming provider after diagnosis. Most common methods for finding such a provider included: X, X, and X. Most common cues that helped patients identify welcoming providers included X, X, and X. Overall X% reported receiving care in an LGBTQ+ welcoming environment but X% did not. Of those who did not receive care in a welcoming environment, they were more likely to be X, X, and X. Overall, X% of patients were out to their providers, but this varied by X, X, and X. The most common ways of coming out included X, X, and X. When asked what they wanted to tell health care providers to ensure better care, participants highlighted several themes, including: X, X, and X. These findings provide patient driven insights into how cancer care varies within the LGBTQ+ population by different demographic factors and specific strategies providers can take to enhance care for LGBTQ+ people.


Author(s):  
Galia BARKAI ◽  
Moran GADOT ◽  
Hadar AMIR ◽  
Michal MENASHE ◽  
Lilach SHVIMER-ROTHSCHILD ◽  
...  

Abstract Background The coronavirus disease 2019 (COVID-19) pandemic has forced health-care providers to find creative ways to allow continuity of care in times of lockdown. Telemedicine enables provision of care when in-person visits are not possible. Sheba Medical Center made a rapid transition of outpatient clinics to video consultations (VC) during the first wave of COVID-19 in Israel. Objective Results of a survey of patient and clinician user experience with VC are reported. Methods Satisfaction surveys were sent by text messages to patients, clinicians who practice VC (users) and clinicians who do not practice VC (non-users). Questions referred to general satisfaction, ease of use, technical issues and medical and communication quality. Questions and scales were based on surveys used regularly in outpatient clinics of Sheba Medical Center. Results More than 1200 clinicians (physicians, psychologists, nurses, social workers, dietitians, speech therapists, genetic consultants and others) provided VC during the study period. Five hundred and forty patients, 162 clinicians who were users and 50 clinicians who were non-users completed the survey. High level of satisfaction was reported by 89.8% of patients and 37.7% of clinician users. Technical problems were experienced by 21% of patients and 80% of clinician users. Almost 70% of patients but only 23.5% of clinicians found the platform very simple to use. Over 90% of patients were very satisfied with clinician’s courtesy, expressed a high sense of trust, thought that clinician’s explanations and recommendations were clear and estimated that the clinician understood their problems and 86.5% of them would recommend VC to family and friends. Eighty-seven percent of clinician users recognize the benefit of VC for patients during the COVID-19 pandemic but only 68% supported continuation of the service after the pandemic. Conclusion Our study reports high levels of patient satisfaction from outpatient clinics VC during the COVID-19 pandemic. Lower levels of clinician satisfaction can mostly be attributed to technical and administrative challenges related to the newly implemented telemedicine platform. Our findings support the continued future use of VC as a means of providing patient-centered care. Future steps need to be taken to continuously improve the clinical and administrative application of telemedicine services.


2016 ◽  
Vol 12 (11) ◽  
pp. 1115-1122 ◽  
Author(s):  
Allison Magnuson ◽  
James Wallace ◽  
Beverly Canin ◽  
Selina Chow ◽  
William Dale ◽  
...  

We present the case of a 92-year-old man, MH, who was given a diagnosis of colorectal cancer. His primary care physician, surgeon, geriatric oncologist, and family members all played important roles in his care. MH’s case is an example of a lack of explicit shared goal setting by the health care providers with the patient and family members and how that impeded care planning and health. This case demonstrates the importance of explicitly discussing and establishing shared goals in team-based cancer care delivery early on and throughout the care process, especially for older adults. Each individual member’s goals should be understood as they fit within the overarching shared team goals. We emphasize that shared goal setting and alignment of individual goals is a dynamic process that must occur several times at critical decision points throughout a patient’s care continuum. Providers and researchers can use this illustrative case to consider their own work and contemplate how shared goal setting can improve patient-centered care and health outcomes in various team-based care settings. Shared goal setting among team members has been demonstrated to improve outcomes in other contexts. However, we stress, that little investigation into the impact of shared goal setting on team-based cancer care delivery has been conducted. We list immediate research goals within team-based cancer care delivery that can provide a foundation for the understanding of the process and outcomes of shared goal setting.


2020 ◽  
Vol 7 (6) ◽  
pp. 1724-1731 ◽  
Author(s):  
Carlos El-Haddad ◽  
Iman Hegazi ◽  
Wendy Hu

Understanding and measuring patient expectations of health care is central to improving patient satisfaction and delivering patient-centered care. However, most empiric research in this field has focused on measuring patient expectations for specific diseases only. Patient expectations common to a variety of settings and clinical contexts need to be better understood to design measures with wider utility. We aimed to understand how patients express and conceptualize their expectations of health care across a range of clinical contexts and conditions. Semi-structured interviews were conducted with patients presenting to a major metropolitan hospital, informed by interpretive phenomenological analysis. Sampling continued until thematic saturation. Interview topics explored the illness experience, interactions with clinicians, how patients communicated and conceptualized their expectations of health care, and the nature of these expectations. The 26 participants conceptualized and described their expectations in 3 distinct domains: (1) health outcomes, (2) individual clinicians, and (3) the health-care system. Importantly, these domains were consistent across a variety of clinical contexts, participant demographics, and medical conditions. Despite variation in expectations due to individual patient circumstances, we identified 3 conceptual domains within which expectations consistently lie. When designing measurement tools for patient expectations, we suggest incorporating questions specifically addressing the 3 domains we have identified. With such measures, clinicians and health-care providers can be empowered to provide and monitor patient-centered care with outcomes tailored to what patients desire.


2017 ◽  
Vol 13 (4) ◽  
pp. e291-e302 ◽  
Author(s):  
Manali I. Patel ◽  
Vyjeyanthi S. Periyakoil ◽  
Douglas W. Blayney ◽  
David Moore ◽  
Andrea Nevedal ◽  
...  

Introduction: Cancer is a leading cause of death in the United States. Although treatments have improved, patients and caregivers continue to report significant gaps in their care. The objective of this study was to examine the views of patients and caregivers on their experiences with current cancer care delivery and identify key strategies to improve the delivery of care. Methods and Materials: Semistructured interviews were conducted with 75 patients and 45 caregivers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Participants reported multiple gaps in care delivery, including barriers in health communication with health care providers, lack of elucidation of care goals, lack of care coordination, and challenges in accessing care. Participants identified that greater use of nonphysician providers and alternative formats, such as telephone-based care and home and community-based care, would narrow these gaps. Conclusion: Understanding patients’ and caregivers’ experiences with gaps in cancer care delivery can inform cancer care delivery redesign efforts and lead to targeted interventions that result in patient-centered and family-oriented care.


2012 ◽  
Vol 17 (1) ◽  
pp. 11-16
Author(s):  
Lynn Chatfield ◽  
Sandra Christos ◽  
Michael McGregor

In a changing economy and a changing industry, health care providers need to complete thorough, comprehensive, and efficient assessments that provide both an accurate depiction of the patient's deficits and a blueprint to the path of treatment for older adults. Through standardized testing and observations as well as the goals and evidenced-based treatment plans we have devised, health care providers can maximize outcomes and the functional levels of patients. In this article, we review an interdisciplinary assessment that involves speech-language pathology, occupational therapy, physical therapy, and respiratory therapy to work with older adults in health care settings. Using the approach, we will examine the benefits of collaboration between disciplines, an interdisciplinary screening process, and the importance of sharing information from comprehensive discipline-specific evaluations. We also will discuss the importance of having an understanding of the varied scopes of practice, the utilization of outcome measurement tools, and a patient-centered assessment approach to care.


2020 ◽  
Author(s):  
Emad Aborajooh ◽  
Mohammed Qussay Al-Sabbagh ◽  
Baraa Mafrachi ◽  
Muhammad Yassin ◽  
Rami Dwairi ◽  
...  

UNSTRUCTURED We aimed to measure levels of knowledge, awareness, and stress about COVID-19 among health care providers (HCP) in Jordan. This was a cross-sectional study on 397 HCPs that utilized an internet-based questionnaire to evaluate knowledge about COVID-19, availability of personal protective equipment (PEE), future perception, and psychological distress. Ordinal logistic regression analysis was used to evaluate factors associated with knowledge and psychological stress. Overall, 24.4% and 21.2% of the participants showed excellent knowledge and poor knowledge, respectively. Social media (61.7%) was the most commonly used source of information. Being female (β= 0.521, 95% CI 0.049 to 0.992), physician (β=1.421, 95% CI 0.849 to 1.992), or using literature to gain knowledge (β= 1.161, 95% CI 0.657 to 1.664) were positive predictors of higher knowledge. While having higher stress (β= -0.854, 95% CI -1.488 to -0.221) and using social media (β= -0.434, 95% CI -0.865 to -0.003) or conventional media (β= -0.884, 95% CI -1.358 to -0.409) for information were negative predictors of knowledge levels. HCPs are advised to use the literature as a source of information about the virus, its transmission, and the best practice. PPEs should be secured for HCPs to the psychological stress associated with treating COVID-19 patients.


2021 ◽  
Vol 31 (3) ◽  
pp. 472-483
Author(s):  
Ana Cristina Lindsay ◽  
Madelyne J. Valdez ◽  
Denisse Delgado ◽  
Emily Restrepo ◽  
Yessica M. Guzmán ◽  
...  

This descriptive qualitative study explored Latinx mothers’ acceptance of the human papillomavirus (HPV) vaccine for their adolescent children. Data were collected through individual, semi-structured interviews and analyzed using a hybrid method of thematic analysis that incorporated deductive and inductive approaches. Twenty-two ( n = 22), mostly foreign-born, Latinx mothers of male and female adolescents participated in the study. Three main themes and nine subthemes emerged from the analyses. Findings identified the need for increased efforts to raise awareness and knowledge among Latinx mothers of the direct benefits of the HPV vaccine for sons, including stressing prevention of HPV-associated cancers in males. Findings also underscore the need for improved health care providers’ communication and recommendation of the HPV vaccine for Latinx adolescent males. Future research should intervene upon the study’s findings to address barriers that remain and affect Latinx mothers’ acceptance and uptake of the HPV vaccine for their children, in particular their sons.


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