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What Women With Disabilities Write in Personal Blogs About Pregnancy and Early Motherhood: Qualitative Analysis of Blogs.
BackgroundMore than 1 in 10 women of reproductive age identify as having some type of disability. Most of these women are able to become pregnant and have similar desires for motherhood as women without disability. Women with disability, however, face greater stigma and stereotyping, additional risk factors, and may be less likely to receive adequate reproductive health care compared with their peers without disability. More and more individuals, including those with disability, are utilizing the internet to seek information and peer support. Blogs are one source of peer-to-peer social media engagement that may provide a forum for women with disability to both share and obtain peer-to-peer information and support. Nevertheless, it is not clear what content about reproductive health and pregnancy and/or motherhood is featured in personal blogs authored by women with spinal cord injury (SCI), traumatic brain injury (TBI), spina bifida, and autism.ObjectiveThe objective of this study was twofold: (1) to examine the information being shared in blogs by women with 4 types of disabilities, namely, SCI, TBI, spina bifida, and autism, about reproductive health, disability, health care, pregnancy, and motherhood; and (2) to classify the content of reproductive health experiences addressed by bloggers to better understand what they viewed as important.MethodsPersonal blogs were identified by searching Google with keywords related to disabilities, SCI, TBI, spina bifida, and autism, and a variety of keywords related to reproductive health. The first 10 pages of each database search in Google, based on the relevance of the search terms, were reviewed and all blogs in these pages were included. Blog inclusion criteria were as follows: (1) written by a woman or care partner (ie, parent or spouse) of a woman with a self-identified diagnosis of SCI, TBI, spina bifida, or autism; (2) focused on the personal experience of health and health care during the prepregnancy, prenatal, antepartum, intrapartum, and/or postpartum periods; (3) written in English; and (4) published between 2013 and 2017. A descriptive and thematic qualitative analysis of blogs and corresponding comments was facilitated with NVivo software and matrix analysis.ResultsOur search strategy identified 125 blogs that met all the inclusion criteria; no blogs written by women with spina bifida were identified. We identified 4 reproductive health themes featured in the blog of women with disabilities: (1) (in)accessible motherhood, (2) (un)supportive others, (3) different, but not different, and (4) society questioning motherhood.ConclusionsThis analysis of personal blogs about pregnancy and health care written by women with SCI, TBI, and autism provides a glimpse into their experiences. The challenges faced by these women and the adaptations they made to successfully navigate pregnancy and early motherhood provide insights that can be used to shape future research
Are HIV smartphone apps and online interventions fit for purpose?
Sexual health is an under-explored area of Human-Computer Interaction (HCI), particularly sexually transmitted infections such as HIV. Due to the stigma associated with these infections, people are often motivated to seek information online. With the rise of smartphone and web apps, there is enormous potential for technology to provide easily accessible information and resources. However, using online information raises important concerns about the trustworthiness of these resources and whether they are fit for purpose. We conducted a review of smartphone and web apps to investigate the landscape of currently available online apps and whether they meet the diverse needs of people seeking information on HIV online. Our functionality review revealed that existing technology interventions have a one-size-fits-all approach and do not support the breadth and complexity of HIV-related support needs. We argue that technology-based interventions need to signpost their offering and provide tailored support for different stages of HIV, including prevention, testing, diagnosis and management
Supporting people with active and advanced disease: a rapid review of the evidence
1.1 Background: the NCSI AAD group
The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people.
1.2 Aims of this review
This project set out to meet the following aim:
To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease
Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations
Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease—the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here
Blogging as a viable research methodology for young people with arthritis: a qualitative study.
The development of services that are responsive to the needs of users is a health policy priority. Finding ways of engaging young people in research to gain insights into their particular experiences, perspectives, and needs is vital but challenging. These data are critical to improving services in ways that meet the needs of young people
Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth
Part of the Volume on Digital Media, Youth, and Credibility. This chapter considers the role of Web technologies on the availability and consumption of health information. It argues that young people are largely unfamiliar with trusted health sources online, making credibility particularly germane when considering this type of information. The author suggests that networked digital media allow for humans and technologies act as "apomediaries" that can be used to steer consumers to high quality health information, thereby empowering health information seekers of all ages
Vocalizing the Vindications of Our Veterans: Evaluating the Needs of Our Returning Soldiers
The soldiers of the United States devote their lives, families, and careers in order to ensure our limitless opportunities of liberty and justice. It is therefore our duty, as grateful citizens of America to meet their needs upon return from war. This research evaluates the effects that Post-Traumatic Stress Disorder places on the returning soldiers. This study proposes that in order to support our veterans, there must be established policies that will accommodate for their mental health conditions as well as the required treatments that pertain to such diagnosis. In an effort to evaluate the necessary treatments and conditions needed to properly support our veterans a U.S. veteran was interviewed to discuss his opinion and expedience with PTSD. In addition to this, numerous articles and manuals were referenced. Using this information, a formal definition of PTSD was formulated according to its conditions and criteria. The current methods of treatment and evaluation for PTSD were also evaluated to gain a strong understanding of this disorder. This study also provides evidence as to why PTSD treatments need to be mandated out of concern for both the soldiers as well as the public. With this information the study presents a suggested method of treatment, recommending that the Pentagon should increase “dwell time” and mandate group treatment in between deployments as a part of a comprehensive strategy to reduce the incidence of Post-Traumatic Stress Disorder among returning veterans. It is intended for this work to contribute to future support and aid for our veterans
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