What type of information is needed by AYA cancer survivors in Japan?

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23165-e23165
Author(s):  
Chikako Yamaki ◽  
Yuki Nakatani ◽  
Toshiko Sato ◽  
Hikaru Taniguchi ◽  
Tomoko Takayama
Keyword(s):  
Cancer Survivors ◽  
Role Models ◽  
Information Needs ◽  
Unmet Needs ◽  
Social Issues ◽  
Cancer Control ◽  
Cancer Center ◽  
Support Needs ◽  
Psychological Pain ◽  
Wide Range

e23165 Background: Cancer patients and survivors in the adolescents and young adults (AYA) generation often have a wide range of unmet needs, which include health related matters, communication problems, relationship difficulties, and life roles. Japanese AYA cancer survivors supposedly have these same unmet needs, but it is not clear which specific types of needs should be provided. The purpose of this study was to explore the support needs of Japanese AYA cancer survivors and to propose what type of information they should be provided. Methods: Eleven AYA cancer survivors and their families participated in group interviews. All participants were recruited from the Cancer-Civil Panel of Center for Cancer Control and Information Services, National Cancer Center Japan (NCC-CIS), which is commissioned by the NCC president to support NCC-CIS activities. Participants were asked about their 1) difficulties and painful issues during their cancer history, 2) information needs to handle those difficulties, and 3) willingness to support AYA patients suffering from cancer. Interviews were audio recorded and transcribed verbatim. Three researchers coded the transcripts and constructed the categories to be assessed. Results: Difficulties and painful issues were compiled into four categories: (1) physical and psychological pain that come directly from cancer, (2) uncertainty of the situation and the future, (3) isolation and alienation that come from his/her unique experiences, and (4) distress of facing painful families. Information and support needs included three categories: (1) detailed experiences from the patient’s view, (2) ways to face his/her cancer and life role as a survivor, and (3) role models or companies for sharing the same experiences. All participants expressed the willingness to support someone by the disclosure of their own experiences. Conclusions: Japanese AYA survivors had unmet information needs for both medical and lifelong psycho-social issues. They would like to have information about a variety of personal and subjective experiences in order to recommend possible future solutions. These findings suggest that personal and narrative experiences would support AYA survivors in their efforts to confront their uncertain future with cancer.

scholarly journals Information Needs and Experiences of Scholars in Women’s Studies: Problems and Solutions

2003 ◽  
Vol 64 (3) ◽  
pp. 192-209 ◽  
Author(s):  
Lynn Westbrook
Keyword(s):  
Women's Studies ◽  
Information Seeking ◽  
Information Needs ◽  
Social Issues ◽  
Women’S Studies ◽  
Theoretical Perspectives ◽  
Wide Range ◽  
Problems And Solutions ◽  
Academic Settings ◽  
Complex Population

Women’s studies faculty often engage in complex information-seeking patterns as they examine social issues from a variety of disciplinary and theoretical perspectives. Academic librarians constructing an understanding of those patterns in order to provide effective reference service can incorporate the results of this national, qualitative study on the information needs, information uses, successful strategies, productive tactics, and problem issues reported by a wide range of these interdisciplinary scholars. Finally, advice and guidance from forty-two women’s studies librarians in a wide variety of academic settings provide an array of practical tools for serving this complex population.

scholarly journals Reaching Out to Public Libraries to Help Reduce Cancer Information Disparity

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 172s-172s
Author(s):  
C. Yamaki ◽  
T. Takayama ◽  
Y. Itoh ◽  
Y. Nakatani ◽  
F. Wakao
Keyword(s):  
Public Libraries ◽  
Information Service ◽  
Cancer Control ◽  
Information Services ◽  
Cancer Center ◽  
Cancer Information ◽  
Control Programs ◽  
Reference Information ◽  
Wide Range ◽  
Book Talk

In light of growing interest in people taking more proactive roles in managing the course of long term illnesses, ensuring ready access to cancer information supporting programs has become one of the paramount mandates, for many national cancer control programs. In Japan, the Center for Cancer Control and Information Services, a division of the National Cancer Center Japan (NCC-CIS), is tasked with dissemination of reliable and comprehensive cancer information for all citizens including patients and their families. NCC-CIS compiled cancer information has long been delivered via both dedicated portal “Ganjoho (Cancer Information) Service” ( https://ganjoho.jp ) as well as brochures. As majority of cancer patients and their carers tend to be seniors who are not net-savvy, the portal has its limitations as dissemination channel. A more personalized support is provided by a nationwide network of Cancer Information and Support Centers (CISCs), collocated within 434 state-designated cancer hospitals. CISCs offer both information and counseling support to anyone who has cancer related issues, even if they have never been treated at the given facility. While CISC is a public service, subsidized with national and prefectural funding, many of those in need, remain unaware of the CISCs - at least in part, due to its very location, within a hectic acute care settings. To reach a wider audience, NCC-CIS and CISCs have started to collaborate with public libraries which have traditionally been a neighborhood source of reference information for both the young and old, and clearly more approachable than medical professionals in large hospitals. We have begun by disseminating a “starter-kit” of NCC-CIS publications to public libraries that have signed up with “Cancer Information Gift” project, a donor funded effort launched last summer. To date, almost 60 libraries have taken up this opportunity to either launch a new “Cancer Information Corner”. We have also brought the participating libraries and local CISCs together in regional workshops settings, to explore ways to mutually complement the information services offered by both parties. Collaborative initiatives that have come out of such explorations include “Book Talk on Disease in Library”, an interactive session in relaxed settings, where participants can feel more at ease, raising a wide range of personal concerns, around an issue highlighted in a given book, with both librarians and cancer counselors mediating the discussion. Referrals to CISCs from libraries are also beginning though in low volumes. While the “Cancer Information Gift” project, and its related initiatives are still very much at a nascent stage, we believe this collaboration could potentially go a lot further, to make reliable cancer information (and CISCs) more accessible to a wider segment of those in need, and in the process, help reduce the cancer disparity across the nation.

scholarly journals 4183 Micro-consults: An effective tool for meeting statistical support needs in an academic medical research center

2020 ◽  
Vol 4 (s1) ◽  
pp. 50-50
Author(s):  
Sandra Taylor ◽  
Susan L. Stewart
Keyword(s):  
Medical Center ◽  
Academic Research ◽  
Population Level ◽  
Cancer Center ◽  
Support Needs ◽  
Wide Range ◽  
Statistical Support ◽  
On Line ◽  
General Statistical ◽  
Translational Research Program

OBJECTIVES/GOALS: Access to biostatistics expertise is essential for a successful clinical and translational research program. However, demand for statistical support at academic research centers can strain the capacity of biostatistics units. Our objective was to efficiently increase access to statistical expertise. METHODS/STUDY POPULATION: In cooperation with the Cancer Center Biostatistics Shared Resource, we replaced an informal 1-hour drop-in consultation program with structured office hours to provide statistical support to clinical and translational researchers at the University of California, Davis Medical Center. We doubled office hours to 2 hours per week and established six 20-minute appointments. Two Ph.D. level statisticians staff office hours. Researchers schedule appointments through Acuity Scheduling, a free on-line resource. Availability of the service is advertised monthly by sending an informational flyer to various university listservs. RESULTS/ANTICIPATED RESULTS: Prior to implementing the program in 2014, we averaged 91 office hour consults per year. Subsequently, consultations jumped to 171 in 2014 and have averaged 150 per year since then. Office hours attract students, residents, staff and faculty from a wide range of disciplines including the Schools of Medicine, Nursing, Veterinary Medicine and basic science departments. Project types span the clinical and translational spectrum covering lab, animal, clinical and population-level studies. Most consults related to data analysis and interpretation (57%) followed by sample size calculations/study design (29%) and response to reviewers (4%), with general statistical advice as the remainder. DISCUSSION/SIGNIFICANCE OF IMPACT: With 6 micro-consults per week, we can meet with many investigators and triage their statistical support needs. This program has proved very popular and was highly rated in a recent user survey, with several investigators noting that the consults facilitated successful publications and proposals.

Met and unmet needs among adults with mild to moderate intellectual disability with and without mental health problems

2020 ◽  
Author(s):  
Matthias Schützwohl
Keyword(s):  
Mental Health ◽  
Intellectual Disability ◽  
Unmet Needs ◽  
Mental Health Problems ◽  
Psychiatric Symptoms ◽  
Health Problems ◽  
Service Planning ◽  
Support Needs ◽  
Behaviour Problem ◽  
Prevalence Rates

Background: People with an intellectual disability (ID) show a great number and complex constellation of support needs. With respect to the planning of services, it is important to assess needs at the population level. ID services need to know to what extent support needs of clients with mental health problems differ from support needs of clients without any mental health problem.Aims: The aim of this study was to compare the prevalence rates of needs in relevant study groups. Methods: Data was generated from the MEMENTA-Study (“Mental health care for adults with intellectual disability and a mental disorder”). The Camberwell Assessment of Need for Adults with Intellectual Disabilities (CANDID) was used to assess met und unmet support needs. Data was available for n=248 adults with mild to moderate ID.Results: Mean total number of needs and unmet needs was associated with mental health status. However, in most particular areas under study, individuals without significant psychiatric symptoms or any behaviour problem needed as much as often help as individuals with such mental health problems. A higher rate of need for care among study participants with significant psychiatric symptoms or any behaviour problem was mainly found with regard to these specific areas (“minor mental health problems”, “major mental health problems”, “inappropriate behaviour”) or with regard to closely related areas (“safety of others”).Conclusions: Differences in prevalence rates mainly occurred in such areas of need that rather fall under the responsibility of mental health services than under the responsibility of ID services. This has implications for service planning.

What do patients want? A qualitative exploration of patients’ needs and expectations regarding online access to their primary care record

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711245
Author(s):  
Gail Davidge ◽  
Caroline Sanders ◽  
Rebecca Hays ◽  
Rebecca Morris ◽  
Helen Atherton ◽  
...  
Keyword(s):  
Primary Care ◽  
Thematic Analysis ◽  
Support Needs ◽  
Future Design ◽  
Wide Range ◽  
Primary Care Record ◽  
Online Access ◽  
Qualitative Exploration ◽  
Nhs Health Check ◽  
Patients Wishes

BackgroundPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. GP contracts in England state practices must promote and offer registered patients online access to their primary care record and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access.AimTo explore patients’ views about accessing online primary care records and to find out how patients would like to interact with their records and what support they may need.MethodInterviews and focus groups with a sample of 50 patients from a variety of socio-demographic backgrounds who were either; eligible for the NHS Health Check; had multimorbidities or were carers. Thematic analysis of data identified major themes impacting upon patients’ wishes and needs as well as highlighting population-specific issues.ResultsParticipants highlighted a wide range of views about the benefits and drawbacks of accessing their records online. The majority of participants indicated that they would be more likely to access their online primary care record if improvements were made to the design, reliability and functionality of existing online record services. Carers found accessing online records particularly useful.ConclusionConsultation with patients and carers about their experiences of accessing online records; support needs and preferred functions can provide useful insights to inform the future design of online record services.

(Preprint)

2018 ◽  
Author(s):  
Ram Dixit ◽  
Sahiti Myneni
Keyword(s):  
Cancer Survivors ◽  
Mental Models ◽  
Health Systems ◽  
Information Needs ◽  
Health Data ◽  
Information Architecture ◽  
Personal Health ◽  
User Centered Design ◽  
Card Sort ◽  
Connected Health

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.

scholarly journals Sustainable Sources from Aquatic Organisms for Cosmeceuticals Ingredients

Cosmetics ◽  
2021 ◽  
Vol 8 (2) ◽  
pp. 48
Author(s):  
Carmen G. Sotelo ◽  
María Blanco ◽  
Patricia Ramos ◽  
José A. Vázquez ◽  
Ricardo I. Perez-Martin
Keyword(s):  
Social Issues ◽  
Good Condition ◽  
Aquatic Organisms ◽  
The Body ◽  
Fishing Activity ◽  
Marine Biomass ◽  
Cosmetic Industry ◽  
Wide Range ◽  
Long Life ◽  
By Products

Long life expectancy of populations in the developing world together with some cultural and social issues has driven the need to pay special attention to health and physical appearance. Cosmeceuticals are gaining interest in the cosmetic industry as their uses fulfills a double purpose: the requirements of a cosmetic (clean, perfume, protect, change the appearance of the external parts of the body or keeping them in good condition) with a particular bioactivity function. The cosmetics industry, producing both cosmetics and cosmeceuticals, is currently facing numerous challenges to satisfy different attitudes of consumers (vegetarianism, veganism, cultural or religious concerns, health or safety reasons, eco-friendly process, etc.). A currently growing trend in the market is the interest in products of low environmental impact. Marine origin ingredients are increasingly being incorporated into cosmeceutical preparations because they are able to address several consumer requirements and also due to the wide range of bioactivities they present (antioxidant, whitening, anti-aging, etc.). Many companies claim “Marine” as a distinctive marketing signal; however, only a few indicate whether they use sustainable ingredient sources. Sustainable marine ingredients might be obtained using wild marine biomass through a sustainable extractive fishing activity; by adopting valorization strategies including the use of fish discards and fish by-products; and by sustainably farming and culturing marine organisms.

scholarly journals Teaching Critical Vocabulary to Filipino Heritage Language Learners

2021 ◽  
Vol 11 (6) ◽  
pp. 260
Author(s):  
Jayson Parba
Keyword(s):  
Language Development ◽  
Social Issues ◽  
Language Teaching ◽  
Language Teachers ◽  
World Language ◽  
Wide Range ◽  
Teachers And Students ◽  
The Status ◽  
Language Classrooms ◽  
L1 And L2

Engaging in critical dialogues in language classrooms that draw on critical pedagogical perspectives can be challenging for learners because of gaps in communicative resources in their L1 and L2. Since critically oriented classrooms involve discussing social issues, students are expected to deploy “literate talk” to engage in critiquing society and a wide range of texts. Although recent studies have explored teachers’ and students’ engagement with critical materials and critical dialogues, research that explores language development in critical language teaching remains a concern for language teachers. In this paper, I share my experience of fostering language development, specifically the overt teaching of critical vocabulary to students of (Tagalog-based) Filipino language at a university in Hawai’i. Through a discussion of racist stereotypes targeting Filipinos and the impacts of these discourses on students’ lived experiences, the notion of “critical vocabulary” emerges as an important tool for students to articulate the presence of and to dismantle oppressive structures of power, including everyday discourses supporting the status quo. This paper defines critical vocabulary and advances its theoretical and practical contribution to critical language teaching. It also includes students’ perspectives of their language development and ends with pedagogical implications for heritage/world language teachers around the world.

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