RESUMO
BACKGROUND: Individuals in need of medical care turn to crowdfunding websites to engage a "crowd" or group for financial support. In the last decade, access to insulin has decreased considerably for several reasons, including the rising cost of insulin, increasing popularity of high-deductible insurance plans, and increasing insurance premiums. Many people with diabetes are forced to ration or go without insulin, and they turn to crowdfunding websites to seek financial donations to purchase insulin needed to reduce health risks and mortality, and sustain quality of life. OBJECTIVE: This study aimed to explore crowdfunding campaign requests to purchase insulin in the United States. METHODS: In this retrospective, quantitative, and qualitative study, we coded the text of GoFundMe online crowdfunding campaigns and viral measures (shares, hearts, and comments) from February 25 to April 15, 2019. We described campaigns (N=205) and explored the factors associated with campaign success using correlations and qualitative thematic analysis. RESULTS: The majority of campaigns were initiated by middle-aged adults (age 26-64 years; 77/205, 37.6%), those with type 1 diabetes (94/205, 45.9%), and those needing funds owing to insurance coverage issues (125/205, 61.0%). The factors associated with campaign success included requests for ≤US $500 (P=.007) and higher viral measures (shares, P=.007; hearts, P<.001; comments, P=.002). The following 4 themes emerged from the campaign text: (1) desire for self-management and survival, (2) diabetes management untenable given insulin access, (3) aftermath of insulin unaffordability, and (4) privacy issues with crowdfunding. Campaign comments were both supportive (tangible, informational, and emotional) and unsupportive (questioned the need for the campaign and deemed crowdfunding inappropriate). CONCLUSIONS: Despite crowdfunding websites being used to support the purchase of insulin, campaigns raised only a fraction of the money requested. Therefore, GoFundMe campaigns are not a reliable solution to obtain funds for insulin in the United States. Applying quantitative and qualitative methods is adequate to analyze online crowdfunding for costs of medications such as insulin. However, it is critical for people with diabetes to use resources other than online crowdfunding to access and obtain insulin owing to low success rates. Clinicians should routinely assess difficulty accessing or affording insulin, and federal health care policies should support lowering the cost of insulin.
RESUMO
BACKGROUND: More 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. OBJECTIVE: The 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. METHODS: Personal 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. RESULTS: Our 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. CONCLUSIONS: This 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.
