“Better everyone should know our business than we lose our house”: Costs and benefits of medical crowdfunding for support, privacy, and identity

In the United States, medical crowdfunding is an increasingly common response to overwhelming healthcare costs. Semi-structured interviews were conducted with 30 individuals crowdfunding for health (e.g. cancer, paralysis, brain injury) on behalf of themselves or others, to better understand this new phenomenon as it informs theory on social support, identity, and privacy. First, findings suggest that crowdfunding is often a resource for both instrumental and emotional social support. Second, many crowdfunders weighed the need for support against perceived privacy risks, which is consistent with and extends privacy calculus theory. Finally, highly vulnerable self-disclosures were often reinterpreted to be empowering, which also supports and extends work on identity shift. Using crowdfunding as a context for inquiry, findings point to new theoretical frameworks to describe how users navigate needs for both privacy and support online and the often positive consequences of that negotiation for identity.

[1]  Aaron Ben-Ze'ev,et al.  Privacy, emotional closeness, and openness in cyberspace , 2003, Comput. Hum. Behav..

[2]  Brandon Van Der Heide,et al.  Can sharing affect liking? Online taste performances, feedback, and subsequent media preferences , 2015, Comput. Hum. Behav..

[3]  Jinyoung Min,et al.  How are people enticed to disclose personal information despite privacy concerns in social network sites? The calculus between benefit and cost , 2015, J. Assoc. Inf. Sci. Technol..

[4]  Megan Farnel,et al.  Kickstarting trans*: The crowdfunding of gender/sexual reassignment surgeries , 2015, New Media Soc..

[5]  J. Walther Computer-Mediated Communication , 1996 .

[6]  Vincent R. Waldron,et al.  Communication of social support in computer-mediated groups for people with disabilities. , 1999, Health communication.

[7]  A. Frank The Rhetoric of Self-Change: Illness Experience as Narrative , 1993 .

[8]  Julia Sisler,et al.  Crowdfunding for medical expenses , 2012, Canadian Medical Association Journal.

[9]  Michael Stefanone,et al.  Exploring the relationship between perceptions of social capital and enacted support online , 2012, J. Comput. Mediat. Commun..

[10]  Jeffrey T. Hancock,et al.  Mirror, Mirror on my Facebook Wall: Effects of Exposure to Facebook on Self-Esteem , 2011, Cyberpsychology Behav. Soc. Netw..

[11]  Susan B. Barnes,et al.  A privacy paradox: Social networking in the United States , 2006, First Monday.

[12]  Crowdfunding the Future , 2015 .

[13]  Jessica Einspänner Privacy online: Perspectives on privacy and self-disclosure in the social web , 2013, New Media Soc..

[14]  Stephen A. Rains,et al.  Human Communication Research Issn 0360-3989 a Meta-analysis of Research on Formal Computer-mediated Support Groups: Examining Group Characteristics and Health Outcomes , 2022 .

[15]  Bethan Jones,et al.  Crowdfunding the future: media industries, ethics, and digital society , 2015 .

[16]  Jeremy N. Bailenson,et al.  The embodiment of sexualized virtual selves: The Proteus effect and experiences of self-objectification via avatars , 2013, Comput. Hum. Behav..

[17]  Jeffrey T. Hancock,et al.  Separating Fact From Fiction: An Examination of Deceptive Self-Presentation in Online Dating Profiles , 2008, Personality & social psychology bulletin.

[18]  K. Doherty,et al.  The Impact of Self-Presentations on Self-Appraisals and Behavior: The Power of Public Commitment , 1994 .

[19]  Sarah Spiekermann,et al.  Online social networks: why we disclose , 2010, J. Inf. Technol..

[20]  D. Boyd Why Youth (Heart) Social Network Sites: The Role of Networked Publics in Teenage Social Life , 2007 .

[21]  Rathindra Sarathy,et al.  Understanding Situational Online Information Disclosure as a Privacy Calculus , 2010, J. Comput. Inf. Syst..

[22]  Stephen A. Rains,et al.  Weak-Tie Support Network Preference and Perceived Life Stress Among Participants in Health-Related, Computer-Mediated Support Groups , 2010, J. Comput. Mediat. Commun..

[23]  Cliff Lampe,et al.  Negotiating Privacy Concerns and Social Capital Needs in a Social Media Environment , 2011, Privacy Online.

[24]  Lindsay H. Shaw,et al.  In Defense of the Internet: The Relationship between Internet Communication and Depression, Loneliness, Self-Esteem, and Perceived Social Support , 2002, Cyberpsychology Behav. Soc. Netw..

[25]  M. Culnan,et al.  Information Privacy Concerns, Procedural Fairness, and Impersonal Trust: An Empirical Investigation , 1999 .

[26]  N. Baym Connect With Your Audience! The Relational Labor of Connection , 2015 .

[27]  Cliff Lampe,et al.  The Benefits of Facebook "Friends: " Social Capital and College Students' Use of Online Social Network Sites , 2007, J. Comput. Mediat. Commun..

[28]  David J. Atkin,et al.  Communication Technology and Society: Audience Adoption and Uses , 2002 .

[29]  Elizabeth Warren,et al.  Medical bankruptcy in the United States, 2007: results of a national study. , 2009, The American journal of medicine.

[30]  Russell H. Fazio,et al.  Self-perceptions following social interaction. , 1981 .

[31]  S. Ziebland,et al.  Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health? , 2012, The Milbank quarterly.

[32]  Bethan Jones,et al.  Crowdfunding: A New Media & Society special issue , 2015, New Media Soc..

[33]  Nicole B. Ellison,et al.  ‘There’s a network out there you might as well tap’: Exploring the benefits of and barriers to exchanging informational and support-based resources on Facebook , 2013, New Media Soc..

[34]  Kathy Charmaz,et al.  Identity Dilemmas of Chronically Ill Men , 1994 .

[35]  Yair Amichai-Hamburger,et al.  The Effect of Feedback on Identity Shift in Computer-Mediated Communication , 2011 .

[36]  L. Reinecke,et al.  Influence of Social Support Received in Online and Offline Contexts on Satisfaction With Social Support and Satisfaction With Life: A Longitudinal Study , 2015 .

[37]  Neil S. Coulson,et al.  Receiving Social Support Online: An Analysis of a Computer-Mediated Support Group for Individuals Living with Irritable Bowel Syndrome , 2005, Cyberpsychology Behav. Soc. Netw..

[38]  Jeffrey T. Hancock,et al.  Identity Shift in Computer-Mediated Environments , 2008 .

[39]  J. House Work stress and social support , 1981 .

[40]  Kevin B. Wright,et al.  Health-related Support Groups on the Internet: Linking Empirical Findings to Social Support and Computer-mediated Communication Theory , 2003, Journal of health psychology.

[41]  P. Valkenburg,et al.  Social Consequences of the Internet for Adolescents , 2009 .

[42]  Judith Donath,et al.  Public Displays of Connection , 2004 .

[43]  Matthew B. Miles,et al.  Qualitative Data Analysis: An Expanded Sourcebook , 1994 .

[44]  D. Bem Self-Perception Theory , 1972 .

[45]  Nicole Martins,et al.  Communicating Stigma: The Pro-Ana Paradox , 2013, Health communication.