Risks to Privacy With Use of Social Media: Understanding the Views of Social Media Users With Serious Mental Illness
Abstract
Objective:
Methods:
Results:
Conclusions:
Methods
Study Design
Data Collection
Data Analysis
Results
Study Sample
All respondents (N=90)a | Privacy concerns | ||||||
---|---|---|---|---|---|---|---|
Yes (N=32) | No (N=58) | ||||||
Characteristic | N | % | N | % | N | % | pb |
Demographic | |||||||
Gendera | .080 | ||||||
Male | 27 | 31 | 6 | 19 | 21 | 38 | |
Female | 60 | 69 | 25 | 81 | 35 | 63 | |
Lesbian, gay, bisexual, transgender, queer, or questioning | 5 | 6 | 0 | — | 5 | 9 | .156 |
Age group (years) | .270 | ||||||
30 or younger | 26 | 29 | 7 | 22 | 19 | 33 | |
31–40 | 26 | 29 | 9 | 28 | 17 | 29 | |
41–50 | 21 | 23 | 12 | 38 | 9 | 16 | |
51 or older | 17 | 19 | 4 | 13 | 13 | 22 | |
Race-ethnicitya | .708 | ||||||
Asian | 4 | 5 | 1 | 3 | 2 | 4 | |
Black/African American | 6 | 7 | 3 | 9 | 3 | 5 | |
Caucasian or non-Hispanic white | 74 | 84 | 26 | 81 | 48 | 87 | |
Hispanic or Latino | 3 | 3 | 1 | 3 | 2 | 4 | |
Native | 1 | 1 | 1 | 3 | 0 | — | |
Education | .010* | ||||||
Less than college degree | 41 | 46 | 9 | 28 | 32 | 55 | |
College degree | 47 | 52 | 21 | 66 | 26 | 45 | |
Currently in school | 2 | 2 | 2 | 6 | 0 | — | |
Employment | .038* | ||||||
Currently workingc | 43 | 48 | 20 | 63 | 23 | 40 | |
Not currently workingd | 47 | 52 | 12 | 38 | 35 | 60 | |
Living situationa | .733 | ||||||
Alone | 25 | 28 | 7 | 23 | 18 | 32 | |
With family | 34 | 39 | 12 | 39 | 22 | 39 | |
With partner (such as spouse or significant other) | 24 | 27 | 11 | 35 | 13 | 23 | |
With roommates | 3 | 3 | 1 | 3 | 2 | 4 | |
Supported housing | 2 | 2 | 0 | — | 2 | 4 | |
Clinical | |||||||
Primary mental illness diagnosis | .727 | ||||||
Schizophrenia spectrum disorder | 36 | 40 | 12 | 38 | 24 | 41 | |
Bipolar disorder | 33 | 37 | 11 | 34 | 22 | 38 | |
Major depressive disorder | 21 | 23 | 9 | 28 | 12 | 21 | |
Hospitalized for mental illnessa | .280 | ||||||
Several times | 54 | 61 | 17 | 55 | 37 | 64 | |
Once | 14 | 16 | 4 | 13 | 10 | 17 | |
Never | 21 | 24 | 10 | 32 | 11 | 19 | |
How often mental health symptoms interfere with daily activities (such as work, school, and recreation)a | .360 | ||||||
Not at all | 2 | 2 | 0 | — | 2 | 3 | |
Minimal (can be easily ignored without effort) | 3 | 3 | 0 | — | 3 | 5 | |
Mild (can be ignored, does not affect daily activities that much) | 11 | 12 | 5 | 16 | 6 | 10 | |
Moderate (cannot be ignored and occasionally affects daily activities) | 42 | 47 | 18 | 58 | 24 | 41 | |
Severe (cannot be ignored and frequently limits daily activities) | 20 | 22 | 5 | 16 | 15 | 26 | |
Very severe (cannot be ignored and always affects daily activities) | 11 | 12 | 3 | 10 | 8 | 14 |
All respondents (N=90)a | Privacy concerns | ||||||
---|---|---|---|---|---|---|---|
Yes (N=32) | No (N=58) | ||||||
Characteristic | N | % | N | % | N | % | pb |
Frequency of social media use | .052 | ||||||
Daily | 84 | 93 | 28 | 88 | 56 | 97 | |
At least once each week | 5 | 6 | 4 | 13 | 1 | 2 | |
Less than once each week | 1 | 1 | 0 | — | 1 | 2 | |
Type of social mediac | |||||||
90 | 100 | 28 | 88 | 51 | 88 | .952 | |
82 | 91 | 28 | 88 | 54 | 93 | .371 | |
42 | 47 | 15 | 47 | 27 | 47 | .977 | |
YouTube | 61 | 68 | 21 | 66 | 40 | 69 | .745 |
Snapchat | 20 | 22 | 10 | 31 | 10 | 17 | .126 |
24 | 27 | 14 | 44 | 10 | 17 | .006* | |
29 | 32 | 11 | 34 | 18 | 31 | .745 | |
How social media is usually accessed | |||||||
Own phone | 76 | 84 | 27 | 84 | 49 | 85 | .989 |
Own computer | 58 | 64 | 18 | 56 | 40 | 69 | .228 |
Own tablet | 35 | 39 | 13 | 41 | 22 | 38 | .802 |
Someone else’s device | 5 | 6 | 1 | 3 | 4 | 7 | .652 |
What are the main reasons you use social media? | |||||||
Connect with others who also have mental illness | 65 | 72 | 24 | 75 | 41 | 71 | .662 |
Learn about mental illness from others | 38 | 42 | 13 | 41 | 25 | 43 | .820 |
Share personal experiences about living with mental illness | 60 | 67 | 22 | 69 | 38 | 66 | .755 |
Learn about strategies for coping with mental illness | 45 | 50 | 17 | 53 | 28 | 48 | .660 |
How often do you use social media to search for information about your mental illness? | .474 | ||||||
Daily | 24 | 27 | 7 | 22 | 17 | 29 | |
At least once each week | 32 | 36 | 10 | 31 | 22 | 38 | |
At least once each month | 14 | 16 | 5 | 16 | 9 | 16 | |
Less than once each month | 20 | 22 | 10 | 31 | 10 | 17 | |
How often do you use social media to connect with other people who also have a mental illness?a | .765 | ||||||
Daily | 44 | 50 | 14 | 45 | 30 | 53 | |
At least once each week | 25 | 28 | 9 | 29 | 16 | 28 | |
At least once each month | 7 | 8 | 2 | 6 | 5 | 9 | |
Less than once each month | 12 | 14 | 6 | 19 | 6 | 11 |
Privacy Risks
Qualitative Findings
Major category and code | Sample responses |
---|---|
Threats to employment | |
Employer finds out | “In case my employer found out.” [Female participant, age 41–50 years, with schizophrenia spectrum disorder] |
Not being hired | “I’m afraid if I ever apply for a job, they'll look at my posts (some I’m not proud of, because of my mental illness), and not hire me/fire me.” [Male participant, age ≤30 years, with schizophrenia spectrum disorder]; “I sometimes worry about it—what I post could prevent me from getting a job in the future.” [Female participant, age 31–40 years, with major depressive disorder] |
Affect career and promotion | “When I was employed (disabled now) I would NEVER post about my mental illness for fear that my (or any potential) employer would find out and use it as a base for discriminating against me in hiring, eval[uations], and promotions.” [Female participant, age 41–50 years, with major depressive disorder]; “That is why I tweet anonymously; otherwise diagnosis could affect my career standing and promotion.” [Female participate, age 41–50 years, with bipolar disorder]; “I hate feeling like future prospective employers might find something about my illness on social media and decide against giving me an interview or hiring me.” [Female participant, age 41–50 years, with bipolar disorder] |
Fear of stigma and being judged | |
Stigma | “Yes, sometimes I have been concerned about sharing online and writing a memoir because the stigma, discrimination and lack of compassion is still very much pervasive in society, in schools and in workplaces…. Stigma is a massive problem.” [Female participant, age 41–50, with major depressive disorder] |
Fear of being judged | “I am careful I don’t give too much detail. I’ll share diagnosis and some about symptoms, but I don't get too negative or into some details in my life I feel are private.”[Male participant, age 31–40 years, with bipolar disorder]; “Many people are not understanding or tolerant of mental illness….” [Female participant, age 41–50 years, with schizophrenia spectrum disorder] |
Others finding out | “I worry people will find out some things about me and judge or get upset.” [Female participant, age >50 years, with schizophrenia spectrum disorder]; “There’s always risk involved when posting personal info on social media. You open yourself up to the opinions of others.” [Female participant, age ≤30 years, with major depressive disorder] |
Impact on personal relationships | |
Spouse could find out | “I’m concerned that people I know will find my account.” [Female participant, age 30 years or younger, with major depressive disorder] |
Personal relationships | “I worry that my work and spouse will find personal/anonymous things that I write.” [Male participant, age 41–50 years, with bipolar disorder] |
Impact on dating | “So when it comes to dating and work I am often terrified of the possible outcome.” [Female participant, age 31–40 years, with bipolar disorder]; “Despite the very real reality that my openness will cause some men not to want to date a “crazy girl” or an employer to question my capabilities, I continue to publicly share more and more over time.” [Female participant, age 41–50 years, with major depressive disorder] |
Facing hostility or being hurt | |
Haters and hackers | “Hackers and haters.” [Female participant, age 31–40 years, with schizophrenia spectrum disorder]; “I worry that my info will be hacked and released to the public.” [Male participant, age 41–50 years, with schizophrenia spectrum disorder] |
Being hurt | “Get information about me and find me and hurt me.” [Female participant, age 51 years or older, with major depressive disorder]; “I know it could be used against me one day. That’s cause for reservation occasionally.” [Male participant, age 31–40 years, with bipolar disorder] |
Threats to employment.
Fear of stigma and being judged.
Impact on personal relationships.
Facing hostility or being hurt.
Discussion
Conclusions
Footnote
References
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