Supporting Patient-led Initiatives to Improve Healthcare

2019 ◽  
Vol 9 (2) ◽  
pp. 44-56
Author(s):  
Miwako Hosoda ◽  
Midori Hosoda
Keyword(s):  
Infectious Disease ◽  
Chronic Disease ◽  
Cancer Patients ◽  
Support Groups ◽  
Social Participation ◽  
Health Professionals ◽  
Social Stigma ◽  
Sick Role ◽  
Health Governance ◽  
Modern Times

In modern times, the main disease structure has changed from infectious disease to chronic disease, and many people are now living with illness. Despite the patients' current situation, society still expects people with disease to behave consistently with the “Sick Role”, which Talcott Parson's previously defined. Once people are diagnosed, for example, as cancer patients, they may lose their jobs and social participation opportunities and their hope to live. To change this situation, people living with disease do a variety of things, for instance, changing their illness image and repelling social stigma, by collaborating with other stakeholders such as medical and health professionals, persons from the workplace, fellow patients, and their community. The actions undertaken by patients in cancer and ME/CFS support groups and prefectural Medical Councils in Japan as well as patients' collaboration with various stakeholders can be seen as a form of health governance. Patient-led initiatives are critical for the overall amelioration of healthcare.

scholarly journals Socio-Economic Inequalities in the Chronic Diseases Management among Chinese Adults Aged 45 years and Above: A Cross Sectional Study

2021 ◽  
Author(s):  
JING GUO ◽  
Jiasen Li ◽  
Kehui Huang ◽  
Xing Lin Feng
Keyword(s):  
Social Capital ◽  
Chronic Disease ◽  
Disease Management ◽  
Social Participation ◽  
Chronic Disease Management ◽  
Social Economic ◽  
Economic Status ◽  
Chinese Adults ◽  
Health Checks ◽  
Diagnosis Of Hypertension

Abstract BackgroundsNon-communicable diseases (NCDs) have become a priority public health issue. The aim of this study was to examine whether social-economic inequalities exist in chronic disease management among Chinese adults, and whether the relationship between SES and chronic disease management mediated by social capital.MethodsWe used combined data from China Health and Retirement Longitudinal Study (CHARLS). A total of 19291 subjects, including 14905 subjects from 2011 survey, 2036 subjects from 2013, and 2350 subjects from 2015 was included in this study.ResultsSubjects living in urban setting, with higher education attainment and economic status were more likely to have annual health checks, and to be diagnosed for those with hypertension, diabetes and dyslipidemia (all P<0.05). Social participation could mediate the association between social economic status (SES) and annual health checks, diagnosis of hypertension and dyslipidemia, and health education of hypertension. Health checks could mediate the association between social participation and the diagnosis of hypertension, diabetes and dyslipidemia. The proportions of mediation were 17.5%, 23.9% and 8.9%, respectively. There were no mediating effects observed from cognitive social capital variable-perceived helpfulness.ConclusionIt is necessary to deeply reform our social security system and enhance the social capital construction to promote those low SES people’s physical health.

scholarly journals DESIGNING CANCER GROUPS FOR MAXIMUM EFFECTIVENESS

Groupwork ◽  
2020 ◽  
Vol 2 (1) ◽  
pp. 58-69
Author(s):  
Barry M Daste
Keyword(s):  
Literature Review ◽  
Cancer Patients ◽  
Support Groups ◽  
Personal Experience ◽  
On Line ◽  
Service Groups ◽  
Shed Light

This article attempts to shed light on some of the problems involved in developing optimum service groups for cancer patients and offers ideas concerning the design, content, leadership and membership of these groups. The article begins with a literature review of current research on issues faced by cancer patients and how these have been handled in support groups and therapy groups across the country. Following this, suggestions are offered to assist those involved in planning for these groups to deal with some of the potential difficulties encountered by many of these groups. Interest in this project grew out of the author’s personal experience with cancer and from the experience of being first a participant, and later a leader, in groups for cancer patients.Publisher’s note: We are now putting all back issues of Groupwork on line. Articles in this issue have been scanned to pdf files as viable original typesetting files no longer exist. Though they may not look it, these files are to some extent searchable. This issue was published nearly 30 years ago. We have stated author professional details as received at time of publication.

scholarly journals Help-seeking Following Termination of Pregnancy after Diagnosis of Fetal Anomaly: Womenʼs Intentions and Experiences 1 to 7 Years after the Event

2018 ◽  
Vol 78 (02) ◽  
pp. 160-166 ◽  
Author(s):  
Franz Hanschmidt ◽  
Rahel Hoffmann ◽  
Johanna Klingner ◽  
Anette Kersting ◽  
Holger Stepan
Keyword(s):  
Psychological Distress ◽  
Support Groups ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Help Seeking ◽  
Emotional Problems ◽  
Self Report ◽  
University Hospital ◽  
Fetal Anomaly ◽  
Current Psychological

Abstract Introduction Diagnosis of fetal anomaly and the difficult circumstances involved in the decision to terminate an affected pregnancy can go along with severe psychological distress. However, little is known about womenʼs help-seeking for emotional problems following an abortion after diagnosis of fetal anomaly. Methods 148 women who had been treated for abortion after diagnosis of fetal anomaly at the University Hospital Leipzig responded to self-report questionnaires 1 to 7 years after the event. Main outcomes were help-seeking intentions and actual help-seeking behavior. Logistic regression was used to explore the associations between participantsʼ sociodemographic characteristics and help-seeking intentions. Results Most women reported that they would seek help from their partner (91.7%), friends/family (82.8%) or the internet (62.2%). With regard to health services, 50.0% of women would seek help from gynecologists and between 43.8 and 47.9% from counseling services and mental health professionals. Intentions to seek help from support groups were lowest (21.7%). Age, income, region, and religion were associated with help-seeking intentions. Among participants with elevated levels of current psychological distress, 23.8% indicated that they had not discussed their emotional problems with a health service ever. Conclusion Gynecologists are among the most preferred health professionals for women to discuss psychological problems in the aftermath of an abortion after diagnosis of fetal anomaly. They should be actively involved in screening, diagnostic assessment, and referral of affected women.

Facebook support groups for pediatric rare diseases: opportunities, limitations and privacy concerns (Preprint)

2021 ◽  
Author(s):  
Sarah Catrin Titgemeyer ◽  
Christian Patrick Schaaf
Keyword(s):  
Rare Disease ◽  
Support Groups ◽  
Support Group ◽  
Rare Diseases ◽  
Health Professionals ◽  
Online Survey ◽  
Privacy Rights ◽  
Cross Sectional ◽  
Privacy Concerns ◽  
Group Members

BACKGROUND Due to the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups. OBJECTIVE We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy and views on using Facebook for communication between health professionals and parents, pharmaceutical companies and for study recruitment. METHODS We contacted twelve Facebook support groups for twelve respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey. RESULTS Of 231 respondents, 87.0% (n=201) respondents were female, 12.6% (n=29) were male and 1 respondent reported another sex (0.4%, n=1). Respondents’ mean age was 41.56 years (SEM=0.621, SD=9.375). 91.3% (n=211) respondents were parents (183 mothers, 27 fathers, 1 other sex). 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week and participated actively (commented/posted) once a month. 79,6% agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and non-group-members. CONCLUSIONS Our study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group’s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children’s privacy rights in this context. CLINICALTRIAL DRKS00016067

Communication about Complementary and Alternative Medicine in Danish Oncological Settings: An Intervention Study

2020 ◽  
Vol 27 (6) ◽  
pp. 392-400
Author(s):  
Nina Nissen ◽  
Sara Seerup Laursen ◽  
Henriette Knold Rossau
Keyword(s):  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Cancer Patients ◽  
Health Professionals ◽  
Intervention Study ◽  
Care Providers ◽  
Sources Of Information ◽  
Before And After ◽  
Cam Use ◽  
Complementary And Alternative

<b><i>Purpose:</i></b> Communication about complementary and alternative medicine (CAM) between cancer patients and health professionals rarely takes place. This article reports on an intervention study that aimed to support communication about the use and effects of CAM between cancer patients and care providers. <b><i>Methods:</i></b> The intervention consisted of the use of evidence-based information material (website; leaflet) about the effects of CAM for cancer. Focus groups with cancer patients, relatives, nurses and doctors (<i>n</i> = 50) determined the preferred content and format of materials and evaluated the intervention. The information material was informed by a related systematic metareview of literature. A survey identified patient participants’ CAM use, information sources, and the extent of communication about CAM before and after the intervention. <b><i>Results:</i></b> No significant impact of the intervention on communication about CAM for cancer patients, patients’ CAM use or sources of information was identified. Health professionals disseminated the leaflet only in response to patients raising the topic; the website was not accessed during consultations. The intervention and information materials were well received. <b><i>Conclusion:</i></b> Cancer patients and care providers wish to improve communication about CAM. Nevertheless, patients and professionals wait for the other to broach the subject of CAM. This reflects a “culture of waiting.”

scholarly journals Infectious disease consultations and newly diagnosed cancer patients

Medicine ◽  
2020 ◽  
Vol 99 (25) ◽  
pp. e20876
Author(s):  
Yoshiro Hadano ◽  
Takashi Watari ◽  
Hiroshi Yasunaga
Keyword(s):  
Infectious Disease ◽  
Cancer Patients ◽  
Newly Diagnosed

scholarly journals Communication Needs of Cancer Patients and/or Caregivers: A Critical Literature Review

2020 ◽  
Vol 2020 ◽  
pp. 1-12
Author(s):  
Jieyu Li ◽  
Xingjuan Luo ◽  
Qian Cao ◽  
Yi Lin ◽  
Yinghua Xu ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Health Professionals ◽  
Information Needs ◽  
Ethnic Origin ◽  
Communication Style ◽  
Physical And Mental Health ◽  
Academic Journal ◽  
Communication Preferences ◽  
Communication Needs ◽  
Communication Interventions

Objective. Effective communication for cancer patients and/or caregivers can meet information needs, reduce caregiver burden, improve physical and mental health, and promote intimacy. The aim of this review was to identify the communication needs of cancer patients and/or caregivers and to explore their specific communication needs to guide the development of future communication interventions. Methods. Chinese and English databases were systematically searched from January 2010 to October 2019, including MEDLINE, CINAHL, PubMed, and the China Academic Journal Full-text Database. The key search terms used were “cancer” or “carcinoma” or “oncology” AND “patient” or “caregiver” or “carer” AND “communication” or “discussion” or “talk” AND “need” or “needs” or “desire.”. Results. A total of 26 articles was identified and included in this review. The findings revealed the needs of cancer patients and/or caregivers in terms of communication target, content, style, timing, and preferences. Communication targets included health professionals, peers, caregivers, and patients. Communication content included illness-related, emotional support, daily life, sexuality, death, and a way to communicate with health professionals. Communication style needed to be expressed through such things as language and communication atmosphere. Communication timing mainly referred to before treatment and approaching death. Communication preferences were related to factors such as demographics and ethnic origin. Conclusions. Cancer patients and/or caregivers have different communication needs in terms of target, content, style, and communication timing. A better understanding of the unique communication needs of patients and/or caregivers will offer health professionals detailed information on designing appropriate interventions to support cancer patients and caregivers.

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