Considerations in Designing Digital Peer Support for Mental Health: Interview Study Among Users of a Digital Support System (Buddy Project)

Nazanin Andalibi, Madison K Flood, Nazanin Andalibi, Madison K Flood

Abstract

Background: Peer support is an approach to cope with mental illness, and technology provides a way to facilitate peer support. However, there are barriers to seeking support in offline and technology-mediated contexts.

Objective: This study aims to uncover potential ways to design digital mental health peer support systems and to outline a set of principles for future designers to consider as they embark on designing these systems. By learning how existing systems are used by people in daily life and by centering their experiences, we can better understand how to design mental health peer support technologies that foreground people's needs. One existing digital peer support system is Buddy Project, the case study in this paper.

Methods: This paper reports on an interview study with Buddy Project users (N=13). Data were analyzed using the constant comparative approach.

Results: Individuals matched through Buddy Project developed supportive friendships with one another, leading them to become each other's peer supporters in their respective journeys. It was not only the mental health peer support that was important to participants but also being able to connect over other parts of their lives and identities. The design of Buddy Project provided a sense of anonymity and separation from pre-existing ties, making it easier for participants to disclose struggles; moreover, the pairs appreciated being able to browse each other's social media pages before connecting. Buddy Project has an explicit mission to prevent suicide and demonstrates this mission across its online platforms, which helps reduce the stigma around mental health within the peer support space. Pairs were matched based on shared interests and identities. This choice aided the pairs in developing meaningful, compatible, and supportive relationships with each other, where they felt seen and understood. However, the pairs were concerned that matching based on a shared mental health diagnosis may lead to sharing unhealthy coping mechanisms or comparing themselves and the severity of their experiences with their peers.

Conclusions: The results of this study shed light on desirable features of a digital mental health peer support system: matching peers based on interests and identities that they self-identify with; having an explicit mental health-related mission coupled with social media and other web-based presences to signal that discussing mental health is safe within the peer support ecosystem; and not matching peers based on a broad mental health diagnosis. However, if the diagnosis is important, this matching should account for illness severity and educate peers on how to provide support while avoiding suggesting unhelpful coping mechanisms; allowing for some degree of anonymity and control over how peers present themselves to each other; and providing relevant information and tools to potential peers to help them decide if they would like to embark on a relationship with their matched peer before connecting with them.

Keywords: design; digital health; digital peer support; internet; mHealth; mental health; peer support; technology.

Conflict of interest statement

Conflicts of Interest: None declared.

©Nazanin Andalibi, Madison K Flood. Originally published in JMIR Mental Health (http://mental.jmir.org), 04.01.2021.

Figures

Figure 1
Figure 1
Buddy Project mission statements on Instagram biography.
Figure 2
Figure 2
The sign-up page on the Buddy Project website.

References

    1. Mental Illness. National Institute of Mental Health. [2020-06-24]. .
    1. Suicide Statistics. American Foundation for Suicide Prevention. 2020. [2020-06-24].
    1. Patel V, Flisher Aj, Hetrick S, McGorry P. Mental health of young people: a global public-health challenge. Lancet. 2007 Apr;369(9569):1302–13. doi: 10.1016/S0140-6736(07)60368-7. doi: 10.1016/S0140-6736(07)60368-7.
    1. Zygo M, Pawłowska B, Potembska E, Dreher P, Kapka-Skrzypczak L. Prevalence and selected risk factors of suicidal ideation, suicidal tendencies and suicide attempts in young people aged 13-19 years. Ann Agric Environ Med. 2019 Jun 17;26(2):329–36. doi: 10.26444/aaem/93817. doi: 10.26444/aaem/93817.
    1. Booth ML, Bernard D, Quine S, Kang MS, Usherwood T, Alperstein G, Bennett DL. Access to health care among Australian adolescents young people's perspectives and their sociodemographic distribution. J Adolesc Health. 2004 Jan;34(1):97–103. doi: 10.1016/j.jadohealth.2003.06.011.
    1. Kazdin AE, Blase SL. Rebooting psychotherapy research and practice to reduce the burden of mental illness. Perspect Psychol Sci. 2011 Jan;6(1):21–37. doi: 10.1177/1745691610393527.
    1. Behavioral Health Workforce Projections. Health Resources and Services Administration. 2020. [2020-06-24]. .
    1. Goldsmith DJ. Advances in Personal Relationships. Cambridge, England: Cambridge University Press; 2008. Communicating social support.
    1. Barker G. Adolescents, Social Support and Help-seeking Behaviour : an International Literature Review and Programme Consultation With Recommendations for Action. Geneva, Switzerland: World Health Organization; 2007.
    1. Ali K, Farrer L, Gulliver A, Griffiths KM. Online peer-to-peer support for young people with mental health problems: a systematic review. JMIR Ment Health. 2015;2(2):e19. doi: 10.2196/mental.4418.
    1. Fukkink R. Peer counseling in an online chat service: a content analysis of social support. Cyberpsychol Behav Soc Netw. 2011 Apr;14(4):247–51. doi: 10.1089/cyber.2010.0163.
    1. Fortuna KL, DiMilia PR, Lohman MC, Bruce ML, Zubritsky CD, Halaby MR, Walker RM, Brooks JM, Bartels SJ. Feasibility, acceptability, and preliminary effectiveness of a peer-delivered and technology supported self-management intervention for older adults with serious mental illness. Psychiatr Q. 2018 Jun;89(2):293–305. doi: 10.1007/s11126-017-9534-7.
    1. Alvarez-Jimenez M, Gleeson JF, Rice S, Gonzalez-Blanch C, Bendall S. Online peer-to-peer support in youth mental health: seizing the opportunity. Epidemiol Psychiatr Sci. 2016 Apr;25(2):123–6. doi: 10.1017/S2045796015001092.
    1. Burgess ER. Collaborative Self-management of Depression. Conference Companion Publication of the 2019 on Computer Supported Cooperative Work and Social Computing; CSCW'19; May 16-19, 2019; Austin, TX. 2019.
    1. O'Leary K, Bhattacharya A, Munson SA, Wobbrock JO, Pratt W. Design Opportunities for Mental Health Peer Support Technologies. Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing; CSCW'17; April 22-24, 2017; Portland, OR. 2017.
    1. Schwartz CE, Sendor RM. Helping others helps oneself: response shift effects in peer support. Soc Sci Med. 1999 Jun;48(11):1563–75. doi: 10.1016/S0277-9536(99)00049-0. doi: 10.1016/S0277-9536(99)00049-0.
    1. Ioannou M, Kassianos AP, Symeou M. Coping with depressive symptoms in young adults: perceived social support protects against depressive symptoms only under moderate levels of stress. Front Psychol. 2018;9:2780. doi: 10.3389/fpsyg.2018.02780. doi: 10.3389/fpsyg.2018.02780.
    1. Biggs BK, Vernberg EM, Wu YP. Social anxiety and adolescents’ friendships. J Early Adolesc. 2011 Dec 5;32(6):802–23. doi: 10.1177/0272431611426145. doi: 10.1177/0272431611426145.
    1. Rickwood D, Deane FP, Wilson CJ, Ciarrochi J. Young people’s help-seeking for mental health problems. Aus J Adv Mental Health. 2014 Dec 17;4(3):218–51. doi: 10.5172/jamh.4.3.218. doi: 10.5172/jamh.4.3.218.
    1. Internet/Broadband Fact Sheet. Pew Research Center. [2020-06-24].
    1. Wetterlin FM, Mar MY, Neilson EK, Werker GR, Krausz M. eMental health experiences and expectations: a survey of youths' web-based resource preferences in Canada. J Med Internet Res. 2014 Dec 17;16(12):e293. doi: 10.2196/jmir.3526.
    1. Naslund JA, Aschbrenner KA, Marsch LA, Bartels SJ. The future of mental health care: peer-to-peer support and social media. Epidemiol Psychiatr Sci. 2016 Apr;25(2):113–22. doi: 10.1017/S2045796015001067.
    1. Doherty G, Coyle D, Matthews M. Design and evaluation guidelines for mental health technologies. Interact Comput. 2010 Jul;22(4):243–52. doi: 10.1016/j.intcom.2010.02.006. doi: 10.1016/j.intcom.2010.02.006.
    1. O'Leary K, Schueller SM, Wobbrock JO, Pratt W. 'Suddenly, We Got to Become Therapists for Each Other': Designing Peer Support Chats for Mental Health. Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems; CHI'18; June 1-4, 2018; Montreal, Québec. 2018.
    1. Buddy Project. [2020-12-03].
    1. Albrecht TL, Burleson BR, Goldsmith D. Handbook of Interpersonal Communication. Second Edition. Thousand Oaks, CA: SAGE Publications Inc; 1994. Supportive communication; pp. 419–49.
    1. Burleson BR, Albrecht TL, Sarason IG. Communication of Social Support: Messages, Interactions, Relationships, and Community. Thousand Oaks, CA: Sage Publications, Inc; 1994.
    1. Burleson BR, MacGeorge EL, Knapp ML, Daly JA. Handbook of Interpersonal Communication. Thousand Oaks, CA: SAGE Publications Inc; 2002. Supportive communication; pp. 374–424.
    1. Cutrona CE, Suhr JA. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res. 2016 Jun 30;19(2):154–74. doi: 10.1177/009365092019002002.
    1. Wright KB, Bell SB, Wright KB, Bell SB. Health-related support groups on the internet: linking empirical findings to social support and computer-mediated communication theory. J Health Psychol. 2003 Jan;8(1):39–54. doi: 10.1177/1359105303008001429.
    1. Morris RR, Schueller SM, Picard RW. Efficacy of a web-based, crowdsourced peer-to-peer cognitive reappraisal platform for depression: randomized controlled trial. J Med Internet Res. 2015 Mar 30;17(3):e72. doi: 10.2196/jmir.4167.
    1. Fortuna K, Barr P, Goldstein C, Walker R, Brewer LP, Zagaria A, Bartels S. Application of community-engaged research to inform the development and implementation of a peer-delivered mobile health intervention for adults with serious mental illness. J Particip Med. 2019;11(1):e12380. doi: 10.2196/12380.
    1. Wang PS, Aguilar-Gaxiola S, Alonso J, Angermeyer MC, Borges G, Bromet EJ, Bruffaerts R, de Girolamo G, de Graaf R, Gureje O, Haro JM, Karam EG, Kessler RC, Kovess V, Lane MC, Lee S, Levinson D, Ono Y, Petukhova M, Posada-Villa J, Seedat S, Wells JE. Use of mental health services for anxiety, mood, and substance disorders in 17 countries in the WHO world mental health surveys. Lancet. 2007 Sep;370(9590):841–50. doi: 10.1016/S0140-6736(07)61414-7. doi: 10.1016/s0140-6736(07)61414-7.
    1. Shalaby RA, Agyapong VI. Peer support in mental health: literature review. JMIR Ment Health. 2020 Jun 9;7(6):e15572. doi: 10.2196/15572.
    1. Mead S, Hilton D, Curtis L. Peer support: a theoretical perspective. Psychiatr Rehabil J. 2001;25(2):134–41. doi: 10.1037/h0095032.
    1. Promoting Recovery in Mental Health and Related Services: Handbook for Personal Use and Teaching Who QualityRights Training to Act, Unite and Empower for Mental Health. World Health Organization. 2017. [2020-06-24]. .
    1. Fortuna KL, Aschbrenner KA, Lohman MC, Brooks J, Salzer M, Walker R, St George L, Bartels SJ. Smartphone ownership, use, and willingness to use smartphones to provide peer-delivered services: results from a national online survey. Psychiatr Q. 2018 Dec;89(4):947–56. doi: 10.1007/s11126-018-9592-5.
    1. Fortuna KL, Venegas M, Umucu E, Mois G, Walker R, Brooks JM. The future of peer support in digital psychiatry: promise, progress, and opportunities. Curr Treat Options Psych. 2019 Jun 20;6(3):221–31. doi: 10.1007/s40501-019-00179-7. doi: 10.1007/s40501-019-00179-7.
    1. Repper J, Carter T. A review of the literature on peer support in mental health services. J Ment Health. 2011 Aug;20(4):392–411. doi: 10.3109/09638237.2011.583947.
    1. Hartzler A, Pratt W. Managing the personal side of health: how patient expertise differs from the expertise of clinicians. J Med Internet Res. 2011 Aug 16;13(3):e62. doi: 10.2196/jmir.1728.
    1. Torous JB, Chan SR, Gipson SY, Kim JW, Nguyen TQ, Luo J, Wang P. A hierarchical framework for evaluation and informed decision making regarding smartphone apps for clinical care. Psychiatr Serv. 2018 May 1;69(5):498–500. doi: 10.1176/appi.ps.201700423.
    1. Alvarez-Jimenez M, Alcazar-Corcoles M, González-Blanch C, Bendall S, McGorry P, Gleeson J. Online, social media and mobile technologies for psychosis treatment: a systematic review on novel user-led interventions. Schizophr Res. 2014 Jun;156(1):96–106. doi: 10.1016/j.schres.2014.03.021.
    1. Firth J, Torous J. Smartphone apps for schizophrenia: a systematic review. JMIR Mhealth Uhealth. 2015 Nov 6;3(4):e102. doi: 10.2196/mhealth.4930.
    1. Leitan ND, Michalak EE, Berk L, Berk M, Murray G. Optimizing delivery of recovery-oriented online self-management strategies for bipolar disorder: a review. Bipolar Disord. 2015 Mar;17(2):115–27. doi: 10.1111/bdi.12258.
    1. Nicholas J, Larsen ME, Proudfoot J, Christensen H. Mobile apps for bipolar disorder: a systematic review of features and content quality. J Med Internet Res. 2015 Aug 17;17(8):e198. doi: 10.2196/jmir.4581.
    1. Torous J, Nicholas J, Larsen ME, Firth J, Christensen H. Clinical review of user engagement with mental health smartphone apps: evidence, theory and improvements. Evid Based Ment Health. 2018 Aug;21(3):116–9. doi: 10.1136/eb-2018-102891.
    1. Torous J, Wisniewski H, Liu G, Keshavan M. Mental health mobile phone app usage, concerns, and benefits among psychiatric outpatients: comparative survey study. JMIR Ment Health. 2018 Nov 16;5(4):e11715. doi: 10.2196/11715.
    1. Carter DM. Living in virtual communities: making friends online. J Urban Technol. 2004 Dec;11(3):109–25. doi: 10.1080/10630730500064448. doi: 10.1080/10630730500064448.
    1. Vitak J, Ellison NB. The Cambridge Handbook of Personal Relationships. Cambridge, England: Cambridge University Press; 2018. Personal relationships and technology in the digital age; pp. 481–93.
    1. Andalibi N, Ozturk P, Forte A. Sensitive Self-disclosures, Responses, and Social Support on Instagram: The Case of #Depression. Proceedings of the Conference on Computer Supported Cooperative Work & Social Computing (CSCW ?17); CSCW'17; April 17-20, 2017; Portland, OR. 2017.
    1. Lederman R, Wadley G, Gleeson J, Bendall S, Álvarez-Jiménez M. Moderated online social therapy. ACM Trans Comput-Hum Interact. 2014 Feb;21(1):1–26. doi: 10.1145/2513179.
    1. Fortuna KL, Naslund JA, LaCroix JM, Bianco CL, Brooks JM, Zisman-Ilani Y, Muralidharan A, Deegan P. Digital peer support mental health interventions for people with a lived experience of a serious mental illness: systematic review. JMIR Ment Health. 2020 Apr 3;7(4):e16460. doi: 10.2196/16460.
    1. Mead S. Peer Support as a Socio-Political Response to Trauma and Abuse. Intentional Peer Support. [2020-06-24]. .
    1. Corbin JM. In: Basics of Qualitative Research : Techniques and Procedures for Developing Grounded Theory. Strauss AL, editor. Thousand Oaks, CA: SAGE Publications Inc; 1998.
    1. Webb M, Burns J, Collin P. Providing online support for young people with mental health difficulties: challenges and opportunities explored. Early Interv Psychiatry. 2008 May;2(2):108–13. doi: 10.1111/j.1751-7893.2008.00066.x.
    1. Takahashi Y, Uchida C, Miyaki K, Sakai M, Shimbo T, Nakayama T. Potential benefits and harms of a peer support social network service on the internet for people with depressive tendencies: qualitative content analysis and social network analysis. J Med Internet Res. 2009 Jul 23;11(3):e29. doi: 10.2196/jmir.1142.
    1. Ellison NB, Blackwell L, Lampe C, Trieu P. 'The question exists, but you don’t exist with it': strategic anonymity in the social lives of adolescents. Soc Media Soc. 2016 Oct 5;2(4):205630511667067. doi: 10.1177/2056305116670673. doi: 10.1177/2056305116670673.
    1. Greden JF, Valenstein M, Spinner J, Blow A, Gorman LA, Dalack GW, Marcus S, Kees M. Buddy-to-Buddy, a citizen soldier peer support program to counteract stigma, PTSD, depression, and suicide. Ann N Y Acad Sci. 2010 Oct;1208:90–7. doi: 10.1111/j.1749-6632.2010.05719.x.
    1. Kapp SK, Gillespie-Lynch K, Sherman LE, Hutman T. Deficit, difference, or both? Autism and neurodiversity. Dev Psychol. 2013 Jan;49(1):59–71. doi: 10.1037/a0028353.
    1. Mohr D, Cuijpers P, Lehman K. Supportive accountability: a model for providing human support to enhance adherence to eHealth interventions. J Med Internet Res. 2011 Mar 10;13(1):e30. doi: 10.2196/jmir.1602.
    1. Griffiths KM, Reynolds J, Vassallo S. An online, moderated peer-to-peer support bulletin board for depression: user-perceived advantages and disadvantages. JMIR Ment Health. 2015;2(2):e14. doi: 10.2196/mental.4266.
    1. Borum R. The Science of Interpersonal Trust. Tampa, FL: Mental Health Law & Policy Faculty Publications; 2010.
    1. Civan A, McDonald DW, Unruh KT, Pratt W. Locating Patient Expertise in Everyday Life. Proceedings of the ACM 2009 international conference on Supporting group work; GROUP'09; June 4-6, 2009; Sanibel Island, FL. 2009. pp. 291–300.
    1. Hartzler AL, Taylor MN, Park A, Griffiths T, Backonja U, McDonald DW, Wahbeh S, Brown C, Pratt W. Leveraging cues from person-generated health data for peer matching in online communities. J Am Med Inform Assoc. 2016 May;23(3):496–507. doi: 10.1093/jamia/ocv175.
    1. Tixier M, Lewkowicz M. Counting on the Group: Reconciling Online and Offline Social Support among Older Informal Caregivers. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems; CHI'16; May 2-6, 2016; San Jose, CA. 2016.
    1. Aschbrenner KA, Naslund JA, Shevenell M, Kinney E, Bartels SA. A pilot study of a peer-group lifestyle intervention enhanced with mhealth technology and social media for adults with serious mental illness. J Nervous Mental Dis. 2016;204(6):483–6. doi: 10.1097/NMD.0000000000000530. doi: 10.1097/nmd.0000000000000530.
    1. Rice S, Gleeson J, Davey C, Hetrick S, Parker A, Lederman R, Wadley G, Murray G, Herrman H, Chambers R, Russon P, Miles C, D'Alfonso S, Thurley M, Chinnery G, Gilbertson T, Eleftheriadis D, Barlow E, Cagliarini D, Toh JW, McAlpine S, Koval P, Bendall S, Jansen JE, Hamilton M, McGorry P, Alvarez-Jimenez M. Moderated online social therapy for depression relapse prevention in young people: pilot study of a 'next generation' online intervention. Early Interv Psychiatry. 2018 Aug;12(4):613–25. doi: 10.1111/eip.12354.
    1. Bernecker SL, Banschback K, Santorelli GD, Constantino MJ. A web-disseminated self-help and peer support program could fill gaps in mental health care: lessons from a consumer survey. JMIR Ment Health. 2017 Jan 19;4(1):e5. doi: 10.2196/mental.4751.
    1. Andalibi N. Disclosure, privacy, and stigma on social media. ACM Trans Comput-Hum Interact. 2020 Jun 16;27(3):1–43. doi: 10.1145/3386600. doi: 10.1145/3386600.
    1. Andalibi N, Haimson OL, Choudhury MD, Forte A. Social support, reciprocity, and anonymity in responses to sexual abuse disclosures on social media. ACM Trans Comput-Hum Interact. 2018 Oct 17;25(5):1–35. doi: 10.1145/3234942.
    1. Andalibi N, Haimson OL, De Choudhury M, Forte A. Understanding Social Media Disclosures of Sexual Abuse Through the Lenses of Support Seeking and Anonymity. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems; CHI'16; June 4-6, 2016; San Jose, CA. 2016. May, pp. 3906–18.
    1. Suler J. The online disinhibition effect. Cyberpsychol Behav. 2004 Jun;7(3):321–6. doi: 10.1089/1094931041291295.
    1. Altman I, Taylor DA. Social Penetration: The Development of Interpersonal Relationships. New York, USA: Holt, Rinehart and Winston; 1973.
    1. Crouch M, McKenzie H. The logic of small samples in interview-based qualitative research. Soc Sci Inform. 2016 Jun 29;45(4):483–99. doi: 10.1177/0539018406069584. doi: 10.1177/0539018406069584.

Source: PubMed

3
S'abonner