scholarly journals Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System—Results from the SURVSARC Study

Cancers ◽  
2021 ◽  
Vol 13 (4) ◽  
pp. 679
Author(s):  
Cas Drabbe ◽  
Dirk J. Grünhagen ◽  
Winan J. Van Houdt ◽  
Pètra M. Braam ◽  
Vicky L. M. N. Soomers ◽  
...  
Keyword(s):  
Supportive Care ◽  
Healthcare System ◽  
Support Groups ◽  
Information Needs ◽  
Age Groups ◽  
Satisfaction With Care ◽  
Rare Cancer ◽  
Questionnaire Response ◽  
Care Information ◽  
Diagnostic Intervals

The aim of this study was to explore the experience of rare cancer patients with the healthcare system and examine differences between age groups (adolescents and young adults (AYA, 18–39 years), older adults (OA, 40–69 years) and elderly (≥70 years)). Dutch sarcoma patients, 2–10 years after diagnosis, completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals (first symptom to first doctor’s visit and first doctor’s visit to diagnosis, respectively) and received supportive care. In total, 1099 patients completed the questionnaire (response rate 58%): 186 AYAs, 748 OAs and 165 elderly. Many survivors experienced insufficient medical and non-medical guidance (32% and 38%), although satisfaction with care was rated good to excellent by 94%. Both patient and diagnostic intervals were >1 month for over half of the participants and information needs were largely met (97%). AYAs had the longest patient and diagnostic intervals, experienced the greatest lack of (non-)medical guidance, had more desire for patient support groups and used supportive care most often. This nationwide study among sarcoma survivors showed that healthcare experiences differ per age group and identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.

Information Practices of Baby Boomers as Caregivers

2013 ◽  
Author(s):  
Khuan Seow ◽  
Nadia Caidi
Keyword(s):  
Social Policy ◽  
Baby Boomers ◽  
Information Needs ◽  
Family Members ◽  
Age Groups ◽  
Maladie D’Alzheimer ◽  
Policy Makers ◽  
Age Related ◽  
The Family ◽  
Growing Age

Canada has an aging population with the fastest growing age groups (80 and 45-64 years old) vulnerable to age-related diseases such as Alzheimer’s disease. Caregiving responsibilities often fall to the family members of the afflicted without much attention and consideration being placed on the information needs of these caregivers. We call for a better understanding of these caregivers' information needs and uses by social policy makers as well as information providers.La population du Canada a tendance à vieillir considérablement, avec la hausse la plus rapide dans les groupes d’âge (80 et 45 à 64 ans). Les personnes âges sont très vulnérables à toute sorte de maladies, telles que la maladie d’Alzheimer. La responsabilité revient souvent aux membres de la famille qui doivent prendre soin des personnes atteintes de cette maladie. Or, nous ne connaissons que peu de chose sur les besoins en information des personnes qui prennent soin de ces malades de l’Alzheimer : qui sont-ils ? Quelles sont leurs sources... 

Leukemia Support Groups: How Are They Doing?

1997 ◽  
Vol 4 (5) ◽  
pp. 407-412
Author(s):  
Donna Corwin Moss
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Age Groups ◽  
Cancer Treatments ◽  
Future Directions ◽  
Course Of Illness ◽  
New Concepts ◽  
Sources Of Support ◽  
Practical Impact

Background Support groups help their participants to cope with the emotional and practical impact of their illnesses. Methods The effectiveness of the Leukemia Society of America support groups in enhancing the quality of life for their participants is reviewed. The groundwork, purpose, and structure of such groups, as well as alternate sources of support, are presented. Evaluation and future directions for oncology groupwork are discussed. Results Support groups complement the therapies provided by clinical practitioners and scientists by addressing the additional needs of cancer patients over the course of illness and survival. Conclusions New concepts and methods that address the needs of specific age-groups and incorporate the newly generated data on cancer treatments will further enhance the benefits provided by support groups.

Palliative Care Information Needs in Central and Eastern Europe and the Commonwealth of Independent States

2015 ◽  
Vol 31 (2) ◽  
pp. 109-117 ◽  
Author(s):  
Saskia Jünger ◽  
Jasper Klose ◽  
Sarah Brearley ◽  
Katalin Hegedus ◽  
Sheila Payne ◽  
...  
Keyword(s):  
Palliative Care ◽  
Eastern Europe ◽  
Information Needs ◽  
Central And Eastern Europe ◽  
Commonwealth Of Independent States ◽  
Independent States ◽  
Care Information

scholarly journals A qualitative approach in determining the patient-centered information and supportive care needs of cancer patients in Singapore

BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e034178
Author(s):  
Gek Phin Chua ◽  
Hiang Khoon Tan
Keyword(s):  
Supportive Care ◽  
Cancer Patients ◽  
Quantitative Study ◽  
Information Needs ◽  
Supportive Care Needs ◽  
Research Approach ◽  
Detailed Knowledge ◽  
Care Needs ◽  
Treatment Unit ◽  
Ambulatory Treatment

ObjectivesTo qualitatively interpret the information and supportive care needs perceived by cancer patients undergoing treatment in order to get a deeper appreciation of patients’ needs and concerns. The intended outcome is to provide baseline knowledge for improving patient-centred strategies to better meet the information and supportive needs of patients.DesignA qualitative research approach, based on conventional content analysis, was used throughout the research process. The three open-ended questions obtained from a previous quantitative study guided the researchers to explore the information and supportive care needs of patients. Data from patients’ responses were analysed and coded in themes.Participants and settingPatients attending the Ambulatory Treatment Unit of the National Cancer Centre Singapore were invited to participate in the study. We determined from these subjects the type of information that cancer patients need, and to measure the extent to which these information needs are met by measuring patients’ level of satisfaction. Included in the quantitative study were three open-ended questions designed to gain a deeper understanding of their needs and concerns. All subjects were aged 21 years and above and able to understand and communicate in English/Mandarin. They were also aware of their diagnosis, they were not cognitively impaired and were not at the end-of-life situation.ResultsA variety of information and supportive care needs were identified, and three specific areas of concerns were identified: (1) psychosocial and supportive care needs, (2) information needs and (3) information delivery by professionals.ConclusionThe information and supportive care needs expressed were consistent with issues of cancer patients undergoing treatment. The strategies to improve patients’ coping abilities through patient-centred care are discussed. Further studies assessing the barriers of information provision by healthcare professionals should provide more detailed knowledge about unmet information needs.

scholarly journals Information Needs of Patients Undergoing Bariatric Surgery in Germany: A Qualitative Interview Study

2021 ◽  
Author(s):  
Jessica Breuing ◽  
Nadja Könsgen ◽  
Katharina Doni ◽  
Annika Lena Neuhaus ◽  
Dawid Pieper
Keyword(s):  
Bariatric Surgery ◽  
Health Insurance ◽  
Support Groups ◽  
Information Needs ◽  
Information Dissemination ◽  
Information Provision ◽  
Nutritional Counseling ◽  
Qualitative Interview Study ◽  
Insurance Funds ◽  
Health Insurance Funds

Abstract BackgroundObesity is a worldwide problem with different treatment options. Bariatric surgery is an effective treatment for severe obesity; however, it leads to drastic changes (e.g., changes in everyday life and eating behavior) for patients, which may lead to information needs. Our aim was to identify the information needs of patients undergoing bariatric surgery and to explore the information provision within the healthcare process of bariatric surgery in Germany.MethodsWe conducted n=14 semi-structured telephone interviews between April 2018 and April 2019. The interview guide was designed prior to the interviews and consisted of 4 main sections (demographic information, pre- and postoperative healthcare provision, information needs). The audio-recorded interviews were transcribed verbatim and analyzed using qualitative content analysis with MAXQDA software.ResultsThere were unmet information needs with two factors (time: pre/postoperative and categories of information: general/specific) to be considered. Due to the patients’ description of information, we categorized information into general (different surgical procedures, general nutritional information) and specific (occurring simultaneously with a problem) information. Most patients felt well informed concerning general information. However, it was pointed out that it was not possible to provide complete information preoperatively, as the need for information only arises when there are postoperative (specific) problems. In addition, there seems to be a high demand for specific postoperative information regarding nutrition and nutrition-related problems. However, patients stated that postoperative nutritional counseling is not reimbursed by health insurance funds. The information conveyed in support groups and the exchange of experiences are highly valued by patients. However, some patients describe the information provided within the support groups as unfiltered, frightening or exaggerated.ConclusionOverall, there were unmet information needs. Reimbursement by health insurance funds could increase the use of postoperative nutritional counseling and thus serve existing information needs. Support groups enable an exchange of experiences and therefore offer low-barrier access to information. Cooperation between support groups and healthcare professionals in information provision could be an approach to improving existing information needs or to avoiding the development of information gaps. Furthermore, the development and implementation of a digital solution for (postoperative) information dissemination could be helpful.

Information Needs and Seeking Behaviour of Rural Women

2015 ◽  
pp. 133-152
Author(s):  
P. Pandiselvi ◽  
M. Lakshmi
Keyword(s):  
Gender Stereotypes ◽  
Gender Discrimination ◽  
Rural Women ◽  
Information Needs ◽  
Indian Society ◽  
Health Care Information ◽  
The Family ◽  
Care Information ◽  
Ancient Times ◽  
Source Of Information

Indian society has been bound by culture and tradition since ancient times. The patriarchal system and the gender stereotypes in the family and society have always showed a preference for the male child. Sons were regarded as a means of social security and women remained under male domination. Due to her subordinated position, she has suffered years of discrimination, exploitation and subjugation. She became the victim of several evils like child marriage, sati, polygamy, Purdah system, female infanticide, forced pregnancy, rape etc. In such incidents/recorded cases surprisingly mother-in-law are also taking active part. This discrimination and violence against women had an effect on the sex ratio in India. The main causes of violence are unequal power-relations, gender discrimination, patriarchy, and economic dependence of women, dowry, low moral values, negative portrayal of women's image in media, no participation in decision-making, gender stereotypes and a negative mindset. In this study about 69.39% of the respondents were married and 4.91% respondents were widow, it is observed that 3.82% of respondents were divorcee. The rest of them 21.85% were unmarried. In this study 50.27% majority of the women need information on education information, followed by information on others respectively 25.68%, agriculture information 22.95%, employment information 15.30%, health care information 11.48%, loan and politics information 9.29%, food nutrition, entertainment information respectively 6.01%, the lowest 3.28% of the respondents needed information on religion. In this study 88% of respondents responded that they were highly satisfied with the source of information, where as 9% of respondents responded that they were partially satisfied, 2.73% of respondents said that the source of information are moderately satisfied.

The CoreQ: Development and Testing of a Nursing Facility Resident Satisfaction Survey

2020 ◽  
pp. 073346482094087
Author(s):  
Nicholas G. Castle ◽  
David Gifford ◽  
Lindsay B. Schwartz
Keyword(s):  
Report Cards ◽  
Satisfaction Survey ◽  
Satisfaction With Care ◽  
Short Stay ◽  
National Quality Forum ◽  
Resident Satisfaction ◽  
Nursing Facility ◽  
Validity Testing ◽  
National Quality ◽  
Care Information

The development and testing of a nursing facility resident satisfaction survey (i.e., CoreQ) that could be used for public reporting purposes is presented here. This is important as very little satisfaction with care information is publicly available for nursing facility consumers. Validity testing is reported detailing the development of the CoreQ: Short Stay Discharge questionnaire and a measure that was calculated from the items in the questionnaire. This questionnaire resulted in four items whose combined score gives a measure representing participants’ overall satisfaction with the nursing facility. The measure parsimoniously reports this satisfaction as a score (ranging from 0 to 100) and was recently endorsed by the National Quality Forum (NQF). The measure may have significance for report cards and payment metrics, as it incorporates the consumers’ opinion.

Human Centred Design Considerations for Multidisciplinary Chronic Heart Failure Disease Management Technology

2000 ◽  
Vol 44 (12) ◽  
pp. 2-642-2-645
Author(s):  
Gyda Bjornsdottir
Keyword(s):  
Heart Failure ◽  
Chronic Heart Failure ◽  
Disease Management ◽  
Information Management ◽  
Healthcare System ◽  
Information Needs ◽  
Holistic Nursing ◽  
Mortality And Morbidity ◽  
Home Based ◽  
High Degree

Chronic Heart Failure (CHF) is a multi-faceted syndrome associated with high mortality and morbidity, as well as high health care costs from both patient and healthcare system perspectives. Optimal CHF disease management involves a high degree of information management and processing, for patients and providers, as well as timely and appropriate information sharing between them. Nurses have long been important conductors of information between patients and the healthcare system, and can provide a valuable perspective on the design of interactive information technology (IIT) to support multidisciplinary sharing of health information. The complimentary perspectives of holistic nursing and human-centred engineering design are discussed in evaluating multidisciplinary information needs and information management needs regarding CHF disease management of home-based CHF patients in Iceland, the author's home country.

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