The development of a patient and caregiver narrative archive to support patient-centered research

Background: Engaging patients and other stakeholders is a key tenet of patient-centered research, but can be challenging to implement. Objectives: To determine the feasibility of using patient narratives for informing comparative effectiveness research and engaging patients in the research process.Research Design: Cross-sectional study.Participants: The first 153 participants to share a story using the MyPaTH Story Booth protocol were, on average, aged 51 (18.8). Most were white (79%) or African American (13%) and well-educated.Measures: Participants self-categorized their narratives according to the sort of health experience(s) described (e.g., diagnosis, doctor/patient communication), the anatomic locations of health problems discussed and the type of disorder or condition addressed. They also reported on whether they were interested in engaging in clinical research as a participant or stakeholder and their satisfaction with the study processes.Results: The archived narratives addressed a wide range of health experiences of relevance to clinical researchers, most often medical treatment (82%), communication with healthcare team members (81%), diagnosis (64%), symptoms (61%), healthcare access (60%) and health decision-making (60%). Health problems related to diverse anatomic locations were addressed. Health conditions such as mental health concerns (35%), infections (23%) and cancers (20%) were often discussed. Among participants, 63% expressed interest in learning of opportunities for stakeholder engagement in research related to their stories. Ninety seven percent were very satisfied or satisfied with the MyPaTH Story Booth process. Conclusions: The narrative archive represents a unique resource for researchers interested in developing and carrying out patient-centered research projects to improve health or healthcare.

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The Role and Activities of Board-Certified Chaplains in Advance Care Planning

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909121989996 ◽

2021 ◽

pp. 104990912198999

Author(s):

Jung Kwak ◽

Soyeon Cho ◽

George Handzo ◽

Brian P. Hughes ◽

Sami S. Hasan ◽

...

Keyword(s):

Advance Care Planning ◽

Self Report ◽

Healthcare Team ◽

Care Planning ◽

Cross Sectional ◽

Team Members ◽

Roles And Responsibilities ◽

Healthcare Settings ◽

Academic Medical ◽

Advance Care

Background: Healthcare chaplains have key roles in providing palliative support to patients and families, and they are well-suited to facilitate advance care planning (ACP). However, empirical data on the roles and responsibilities of chaplains in facilitating ACP are limited. Objectives: To examine the roles of board-certified healthcare chaplains in ACP in various healthcare settings. Methods: A cross-sectional, web-based self-report survey was conducted with 585 board-certified chaplains recruited from 3 major professional chaplains’ organizations in the U.S. The survey data included chaplains’ demographic and professional characteristics, their roles and responsibilities, and responses regarding communication and participation with other healthcare team members in facilitating ACP, including experienced barriers. Results: More participants worked in community hospital settings (42%) and academic medical centers (19.6%) than in any other setting. Over 90% viewed ACP as an important part of their work, 70% helped patients complete advance directives, and 90% helped patients discuss their preferences about end-of-life treatments. Many chaplains were not consistently included in team discussions regarding decision-making, although most chaplains reported that they could always find ways to communicate with their teams. Conclusion: Professional board-certified chaplains regularly engage in facilitating ACP discussions with patients and families in various healthcare settings. There is a need to recognize and provide systematic support for the role of chaplains in facilitating ACP conversations and to integrate chaplains into routine interdisciplinary team and family meetings.

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A cross-sectional study on morbidity status among school going adolescents in Thiruvallur district, Tamil Nadu

International Journal of Community Medicine and Public Health ◽

10.18203/2394-6040.ijcmph20195470 ◽

2019 ◽

Vol 6 (12) ◽

pp. 5201

Author(s):

Sathish Dev D. ◽

Sugantha Valli M. ◽

Gnana Sezhian M. ◽

Suganya E.

Keyword(s):

Tamil Nadu ◽

Gastrointestinal Disease ◽

Age Groups ◽

Cross Sectional Study ◽

Health Problems ◽

Age Group ◽

Sectional Study ◽

Cross Sectional ◽

Wide Range ◽

Tract Infections

Background: Adolescents represent about 21.8 percent of India’s population. Various health risks with potentially life-threatening consequences become prominent in this age group. This study was undertaken with the objective to determine the morbidity profile of school going adolescents in Tamil Nadu.Methods: This descriptive, cross sectional study was planned and conducted from January 2016 to August 2017. The study population included 987 adolescent boys and girls aged between 10 to 19 years studying in high and higher secondary Government schools of Thiruvallur district of Tamil Nadu. Semi-structured questionnaire was used as data collection tool.Results: The mean age groups of this school going adolescent are 14.2 yrs. In the present study 583 (59%) of the study participants were affected by one or more morbidity condition. Among them, 395 (67.7%) were in the age group 10-14 years and 188 (32.2%) in the age group 15-19 years. 122 (21%) and 461 (79.1%) of male and female were affected respectively. In the present study, fever (21%) was the commonest reported morbidity followed by acute respiratory infection (15.7%) and acute gastrointestinal disease (13. 4%).Conclusions: This study shows that adolescents are prone to a wide range of morbidity conditions. Apart from respiratory and gastro intestinal diseases, reproductive tract infections and sexual health problems are important morbidities affecting this age group. There is strong need to sensitize health care practitioners at all levels, in both government and private sectors towards health problems in adolescent age groups.

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INTERPROFESSIONAL SOCIALIZATION AND VALUING SCALE FOR HEALTH PROFESSIONAL STUDENTS WORKING WITH OLDER ADULTS

Innovation in Aging ◽

10.1093/geroni/igz038.1081 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S294-S294

Author(s):

David Cicala ◽

Nicholas Ang ◽

Jennifer Mendez ◽

Shanique Brown ◽

Martha Schiller

Keyword(s):

Medical Students ◽

Older Adult ◽

Interprofessional Education ◽

Healthcare Team ◽

Patient Centered ◽

Team Members ◽

Professional Students ◽

Wayne State University ◽

Need To Evaluate ◽

Perceived Experiences

Abstract Interprofessional education allows students from two or more professions the opportunity to collaboratively practice patient centered care. Given the importance of interprofessional education in helping individuals become effective team members and understanding their value to a healthcare team, there is a need to evaluate the experiences. The Interprofessional Socialization and Valuing Scale (ISVS), aims to measure self-perceived experiences with interprofessional collaborative teamwork, including the ability, value, and comfort in working with others. The Wayne State University Interprofessional Team Visit (IPTV) program is an older adult home visit program that places pharmacy, social work, occupational therapy, nursing, and medical students in teams. Students form teams of 3 different disciplines and interview the older adult to assess various aspects of health and wellbeing. In order to evaluate the interprofessional educational experiences of the students, they are given a pre- and post- survey utilizing the ISVS tool. 18 questions pertaining to perceptions of what students have learned about working with professionals from other disciplines. Students respond to each statement using a 7-point scale with 1 = “Not at All” and 7 = “To a Very Great Extent.” Statistical analysis is conducted in order to compare pre- to post-surveys and also assess differences between groups. It is found that ISVS scores increase from pre- to post-survey, second year medical students and third year pharmacy students feel more comfortable working in teams, and teams consisting of these two have higher average scores.

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Activities of the healthcare team for women who smoke during pregnancy and the puerperium

Revista Latino-Americana de Enfermagem ◽

10.1590/0104-1169.3361.2460 ◽

2014 ◽

Vol 22 (4) ◽

pp. 621-628

Author(s):

Carolina de Castilhos Teixeira ◽

Amália de Fátima Lucena ◽

Isabel Cristina Echer

Keyword(s):

Social Sciences ◽

Cross Sectional Study ◽

University Hospital ◽

Postpartum Women ◽

Healthcare Team ◽

Sectional Study ◽

Cross Sectional ◽

Team Members ◽

Health Team ◽

Staff Members

OBJECTIVE: to identify activities developed by the healthcare team for pregnant and postpartum women who smoke.METHOD: cross-sectional study with a sample of 135 healthcare team members who assist pregnant and postpartum women in a university hospital located in southern Brazil. The data was collected using questionnaires and analyzed using the Statistical Package for Social Sciences software.RESULTS: 76 (56.3%) staff members reported that they always addressed smoking cessation; however, the approach occurred in only two periods of the hospitalization and/or prenatal consultations, not including family members. In regard to the effectiveness of their actions, the health team assessed it as fair or poor, and mentioned the need for updating knowledge regarding this issue.CONCLUSIONS: the health team did not perform the approach as recommended by the tobacco control guidelines, requiring training to offer a qualified and efficient intervention.

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Evaluation of Evidence-Based Phytotherapy Applications

Journal of Academic Research in Nursing ◽

10.5222/jaren.2020.20591 ◽

2020 ◽

Author(s):

Dilek Yıldırım ◽

Dilek Baykal ◽

Gülbeyaz Can

Keyword(s):

Experimental Studies ◽

Small Sample ◽

Healthcare Team ◽

Team Members ◽

Specific Protocol ◽

Wide Range ◽

Gynecology Oncology ◽

Evaluation Of Evidence ◽

National Databases ◽

Lesion Treatment

Many patients refer to complementary methods as well as pharmacological treatments. Phytotherapy is the most used among these methods. For this reason, it is important that the members of the healthcare team and especially the nurses who spend a much longer time with the patient are knowledgeable about phytotherapy. The aim of this review is to enable healthcare team members to have knowledge about phytotherapy and to provide a basis for experimental studies. In this study, CINAHL, EBSCOHost MEDLINE, Ovid, Pubmed, Web of Science The studies which were published in the national databases of ULAKBIM between January 2010 and March 2018 were examined in Turkish or in English. In this database, "Phytotherapy", "Phytotherapy Applications", "Disease Management", "Treatment with Plants" has been reached to work using keywords in Turkish and English words. Studies have shown that phytotherapy is used in a wide range of gynecology, oncology, neuropsychiatry and cardiovascular diseases, orthopedics, lesion treatment. Although it is widely used, it is noteworthy that there is still no specific protocol in many phytotherapy applications, the studies are conducted with small sample groups, and there are uncertainties about how and how to use it in the patient group. In this respect, health personnels should have knowledge about the effects and possible side effects of phytotherapy and should take the lead in the formation of phytotherapy-related care protocols.

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Experiences of households using municipal ward-based primary health care outreach teams in Kwa-Zulu Natal, South Africa: a cross-sectional survey

10.21203/rs.2.19217/v1 ◽

2019 ◽

Author(s):

Landiwe Khuzwayo ◽

Mosa Moshabela

Keyword(s):

Health Care ◽

Sub Saharan Africa ◽

Service Improvement ◽

Health Care Teams ◽

Community Based ◽

Cross Sectional ◽

Skill Sets ◽

Team Members ◽

Outreach Team ◽

Wide Range

Abstract BACKGROUND: Globally, the success of community-based health care teams varies between programmes, and their designs tend to be unique based on local needs and context. Whilst the body of knowledge on community-based health care teams is growing in sub-Saharan Africa, there is still a lack of evaluation studies designed from the perspective of service users. OBJECTIVE: To assess household experiences of health care services delivered by outreach teams, and identify potential areas for service improvement by further examining sub-optimal household experiences.METHODS: We used a cross-sectional household survey in three municipality wards with functional ward-based outreach teams in the iLembe District, out of 74 wards, carried out from October to December 2016. Systematic random sampling was used, and 383 households were surveyed. The mean point of 70% in the strongly agreed category was used to classify household experiences as either optimal (70% and above) or sub-optimal (below 70%). Further univariate and multivariate analyses were conducted for sub-optimal experiences. RESULTS: Nearly all households (99.2%) reported being visited most frequently by community health workers, relative to other outreach team members. Optimal experiences reported by households included services being free-of-charge (91.3%), convenient operating hours (77.9%), and outreach team members treating people with respect and courtesy (72.4 %). Sub-optimal experiences were identified as; outreach teams bringing with them sufficient equipment and medication (46.5%), associated with perceived skill level of team member (aOR 0.28, p: 0.001); teams perceived as being professional in carrying out their duties (56.3%), associated with age (aOR 3.22, p: 0.022) and marital status (aOR 1.80, p: 0.027); and teams providing a satisfactory service to respondents (61.8%), associated with quality of information provided (aOR 0.10, p: 0.002). CONCLUSION: Household experiences are influenced by team composition, and limited to skill sets of CHWs frequently visiting households. Whilst policy-related aspects of the outreach team programme were considered optimal, there was a gap in the service-related experience, which should not only be improved by upskilling CHWs, but also ensuring the full implementation of the heterogenous outreach team to enable different household members to come into contact with a wide range of skill sets and broader service package.

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The transition from pediatric to adult rheumatology care through creating positive and productive patient-provider relationships: an opportunity often forgotten

Journal of Transition Medicine ◽

10.1515/jtm-2021-0001 ◽

2021 ◽

Vol 0 (0) ◽

Author(s):

Teresa Semalulu ◽

Jeanine McColl ◽

Arzoo Alam ◽

Steffy Thomas ◽

Julie Herrington ◽

...

Keyword(s):

Lupus Erythematosus ◽

Positive Interactions ◽

Healthcare Team ◽

Care Providers ◽

Management Skills ◽

Adult Care ◽

Patient Centered ◽

Team Members ◽

Empathy Scale ◽

Perception Of Care

Abstract Background The transition of patients with a chronic rheumatic disease from pediatric to adult care has been characterized by poor medical and patient-centered outcomes due to the lack of comprehensive transition programs and the paucity of evidence to guide practitioners. We describe a multidisciplinary transition program, data assessing patients’ preparedness for transition and perception of care providers, and the association between these outcomes. Content Patients aged 14–19 with childhood-onset systemic lupus erythematosus (cSLE) or juvenile idiopathic arthritis (JIA) were recruited from Rheumatology Transition Clinics and Young Adult Clinics at a single institution. Participants completed the TRANSITION-Q, which assesses healthcare self-management skills as a proxy for transition readiness, and the Consultation and Relational Empathy Scale (CARE) questionnaire, which measures patients’ perception of their providers’ care and empathy. Summary Among 63 participants, 87% had JIA (mean age 16.5 years). Age was the only patient characteristic positively associated with TRANSITION-Q scores. CARE scores revealed overwhelmingly positive interactions between patients and healthcare team members. TRANSITION-Q and CARE scores were positively correlated. Outlook The transition from pediatric to adult rheumatology care should be recognized as an opportunity to impact the trajectories of patients entering adult care where the patient-provider relationship may play an important role.

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Standardized Patients: Potential to Improve Student Training in Aural Rehabilitation

Perspectives on Public Health Issues Related to Hearing and Balance ◽

10.1044/phi16.1.4 ◽

2015 ◽

Vol 16 (1) ◽

pp. 4-14 ◽

Cited By ~ 1

Author(s):

Erin Picou ◽

Anne Marie Tharpe

Keyword(s):

Hearing Loss ◽

Standardized Patients ◽

Well Being ◽

Health Concern ◽

Healthcare Team ◽

Psychosocial Needs ◽

Team Members ◽

Aural Rehabilitation ◽

Wide Range ◽

Instructional Technique

Hearing loss is a growing public health concern. The multifaceted consequences of hearing loss are far reaching and include reduced audibility, well-being, and quality-of-life. Audiologists require specific training to address the wide range of hearing loss (re)habilitation needs, including some of the psychosocial needs of patients. One instructional method that might provide valuable training for the next generation of clinicians is the use of simulated or standardized patients (SPs). Standardized patients (SPs) are actors who are recruited, trained, and typically paid to portray patients, family members, or healthcare team members in a standardized manner for purposes of training healthcare professionals. Advantages to using SPs as an instructional technique were identified through a review of the literature and through discussion with two focus groups of experienced educators in the field of audiology. Advantages included those inherent to SP scenarios (e.g., standardization, authenticity, and safety), as well as those inherent to the experience (e.g., student reflection, comprehensive feedback, etc.). Benefits to students can include increased student confidence and improved interpersonal skills. Although time and resource investments necessary for SP case implementation can be prohibitive for some programs, creative instructors can harness many of the benefits using alternative implementations of SP cases.

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Effects of spousal migration on access to healthcare for women left behind: A cross-sectional follow-up study

PLoS ONE ◽

10.1371/journal.pone.0260219 ◽

2021 ◽

Vol 16 (12) ◽

pp. e0260219

Author(s):

Heidi S. West ◽

Mary E. Robbins ◽

Corrina Moucheraud ◽

Abdur Razzaque ◽

Randall Kuhn

Keyword(s):

Healthcare Utilization ◽

Barriers To Care ◽

Healthcare Access ◽

Sociodemographic Factors ◽

Access To Healthcare ◽

Multinomial Regression ◽

Cross Sectional ◽

Financial Barriers ◽

Left Behind ◽

Wide Range

Background Women left behind by migration represent a unique and growing population yet remain understudied as key players in the context of migration and development. Using a unique longitudinal survey of life in Bangladesh, the Matlab Health and Socioeconomic Surveys, we examined the role of spousal migration in healthcare utilization for women. The objective of this study was to assess realized access to care (do women actually get healthcare when it is needed) and consider specific macrostructural, predisposing, and resource barriers to care that are related to migration. Methods and findings In a sample of 3,187 currently married women, we estimated multivariate logistic and multinomial regression models controlling for a wide range of baseline sociodemographic factors measured as far back as 1982. Our analyses also controlled for selection effects and explored two mechanisms through which spousal migration can affect healthcare utilization for women, remittances and frequent contact with spouses. We found that women with migrant spouses were approximately half as likely to lack needed healthcare compared to women whose spouses remained in Bangladesh (predicted probability of not getting needed healthcare 11.7% vs. 21.8%, p<0.001). The improvements in access (logistic regression coefficient for lacking care for left-behind women -0.761 p<0.01) primarily occurred through a reduction in financial barriers to care for women whose spouses were abroad. Conclusions Wives of international migrants showed significantly better access to healthcare even when accounting for selection into a migrant family. While the overall story is one of positive migration effects on healthcare access due to reductions in financial barriers to care, results also showed an increase in family-related barriers such as not being permitted to get care by a family member or travel alone to a facility, indicating that some of the benefits of migration for women left behind may be diluted by gendered family structures.

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eHealth literacy and preferences for eHealth resources in parents of children with complex CHD

Cardiology in the Young ◽

10.1017/s1047951116001177 ◽

2016 ◽

Vol 27 (4) ◽

pp. 722-730 ◽

Cited By ~ 12

Author(s):

Nadine A. Kasparian ◽

Nathan Lieu ◽

David S. Winlaw ◽

Andrew Cole ◽

Edwin Kirk ◽

...

Keyword(s):

Resource Use ◽

Response Rate ◽

Healthcare Team ◽

Web Based ◽

Literacy Beliefs ◽

Ehealth Literacy ◽

Doctor Patient Communication ◽

Survey Response Rate ◽

Wide Range ◽

Consultation Time

AbstractIntroductionThis study aimed to (a) examine eHealth literacy, beliefs, and behaviours in parents of children with complex CHD, and (b) identify parents’ preferences for the content, format, features, and functions of eHealth resources for CHD.Materials and methodsFamilies (n=198) of children born between 2008 and 2011 and diagnosed with CHD requiring surgery were mailed a survey assessing a range of variables including eHealth literacy, beliefs, and behaviours as well as preferences for the format, functions, features, and content of eHealth resources for CHD.ResultsA total of 132 parents (83 mothers, 49 fathers) completed the survey (response rate: 50%). Mothers (96%) were more likely to access eHealth resources than fathers (83%, χ2=6.74, p=0.009). Despite high eHealth resource use, eHealth literacy was relatively low, with results demonstrating considerable and widespread gaps in awareness of, access to, and communication about eHealth resources. Over 50% of parents reported that decisions regarding their child’s healthcare were influenced, to some extent, by web-based resources. Barriers to doctor–patient communication about eHealth included limited consultation time and concern about doctors’ disapproval. Participants demonstrated a strong desire for “eHealth prescriptions” from their child’s healthcare team, and perceived a wide range of eHealth topics as highly important, including treatment-related complications as well as physical, cognitive, and emotional development in children with CHD.DiscussionResults suggest a need for stronger, more proactive partnerships between clinicians, researchers, educators, technologists, and patients and families to bring about meaningful innovations in the development and implementation of eHealth interventions in paediatric cardiology.

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