Online social support among caregivers of children and youth: networked integrative literature review
DOI:
https://doi.org/10.22235/cp.v14i1.2160Keywords:
caregivers, network analysis, integrative review, online social support, self-help groupsAbstract
The Internet may be a source of social support that promotes the improvement of parental competency. The objective of this study was to analyze the international panorama regarding research on online social support among caregivers of children and youth. This study comprises a Networked Integrative Review of Literature (NIRL) that approaches the literature as an associative network of variables and analyzes it based on the Theory of Graphs. Data search was conducted in two databases and the studies were filtered based on two relevance tests. This NIRL comprises 36 articles, whose results were converted into 53 variables that were categorized according to their relationship. Considering the recurrence of relationships among the variables, it is concluded that “Participation in online groups” promotes “Social support”, “Connection to other people in the same situation” and the emergence of a “Sense of Community”. Other findings are discussed based on the network measures.
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References
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Cacioppo, C.N., Conway, L.J., Mehta, D., Krantz, I.D., & Noon, S.E. (2016). Attitudes about the use of internet support groups and the impact among parents of children with Cornelia de Lange Syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 172(2), 229-236. doi: 10.1002/ajmg.c.31504.
Cantwell, J., Muldoon, O.T., & Gallagher, S. (2014). Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 35(9), 2215-2223. doi: 10.1016/j.ridd.2014.05.012.
Clarke, J.N., & Van Ameron, G. (2015). Parents Whose Children have Oppositional Defiant Disorder Talk to One Another on the Internet. Child and Adolescent Social Work Journal, 32(4), 341-350. doi: 10.1007/s10560-015-0377-5.
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Eriksson, H., & Salzmann‐Erikson, M. (2013). Supporting a caring fatherhood in cyberspace–an analysis of communication about caring within an online forum for fathers. Scandinavian Journal of Caring Sciences, 27(1), 63-69. doi: 10.1111/j.1471-6712.2012.01001.x.
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Gabbert, T.I., Metze, B., Bührer, C., & Garten, L. (2013). Use of social networking sites by parents of very low birth weight infants: experiences and the potential of a dedicated site. European Journal of Pediatrics, 172(12), 1671-1677. doi: 10.1007/s00431-013-2067-7.
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Glenn, A.D. (2015). Using online health communication to manage chronic sorrow: Mothers of children with rare diseases speak. Journal of Pediatric Nursing, 30(1), 17-24. doi: 10.1016/j.pedn.2014.09.013.
Hall, W., & Irvine, V. (2009). E‐communication among mothers of infants and toddlers in a community‐based cohort: A content analysis. Journal of Advanced Nursing, 65(1), 175-183. doi: 10.1111/j.1365-2648.2008.04856.x.
Hanneman, R., & Riddle, M. (2005). Introduction to social network methods. Riverside, CA, EUA: University of California.
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Jacobs, R., Boyd, L., Brennan, K., Sinha, C.K., & Giuliani, S. (2016). The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey. Journal of Pediatric Surgery, 51(11), 1766-1771. doi: 10.1016/j.jpedsurg.2016.07.008.
Johnson, S.A. (2015). ‘Intimate mothering publics’: comparing face-to-face support groups and Internet use for women seeking information and advice in the transition to first-time motherhood. Culture, Health & Sexuality, 17(2), 237-251. doi: 10.1080/13691058.2014.968807.
Kirk, S., & Milnes, L. (2016). An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expectations, 19(2), 309-321. doi: 10.1111/hex.12352.
Laniado, D., Volkovich, Y., Kappler, K., & Kaltenbrunner, A. (2016). Gender homophily in online dyadic and triadic relationships. EPJ Data Science, 5(19), 1-23. doi: 10.1140/epjds/s13688-016-0080-6.
Lee, R.L., & Kvasny, L. (2014). Understanding the role of social media in online health: A global perspective on online social support. First Monday, 19(1). doi: 10.5210/fm.v19i1.4048.
Lewis, T.G. (2009). Network science: Theory and practice. Hoboken, NJ, EUA: John Wiley & Sons, Inc.
Lin, T.C., Hsu, J.S.C., Cheng, H.L., & Chiu, C.M. (2015). Exploring the relationships between receiving and offering online social support: A dual social support model. Information & Management, 52(3), 371-383. doi: 10.1016/j.im.2015.01.003.
Lovell, B., Moss, M., & Wetherell, M.A. (2012). With a little help from my friends: Psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Research in Developmental Disabilities, 33(2), 682-687. doi: 10.1016/j.ridd.2011.11.014.
Martin, S., Roderick, M.C., Lockridge, R., Toledo-Tamula, M.A., Baldwin, A., Knight, P., & Wolters, P. (2016). Feasibility and preliminary efficacy of an internet support group for parents of a child with neurofibromatosis type 1: a pilot study. Journal of genetic counseling, 26(3), 576-585. doi: 10.1007/s10897-016-0031-1.
Martin, S., Wolters, P.L., Baldwin, A., Roderick, M.C., Toledo-Tamula, M.A., Gillespie, A., & Widemann, B. (2014). Attitudes about internet support groups among adolescents and young adults with neurofibromatosis type 1 and their parents. Journal of Genetic Counseling, 3(26), 576-585. doi: 10.1007/s10897-016-0031-1.
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Morris, H., & Bertram, D. (2013). Therapist utilization of online social support for parents of premature infants. Contemporary Family Therapy, 35(3), 583-598. doi: 10.1007/s10591-013-9239-5.
Mustafa, H.R., Short, M., & Fan, S. (2015). Social support exchanges in Facebook social support group. Procedia-Social and Behavioral Sciences, 185, 346-351. doi: 10.1016/j.sbspro.2015.03.449.
Niela-Vilén, H., Axelin, A., Salanterä, S., & Melender, H. L. (2014). Internet-based peer support for parents: A systematic integrative review. International Journal of Nursing Studies, 51(11), 1524-1537. doi: 10.1016/j.ijnurstu.2014.06.009.
Nolan, S., Hendricks, J., & Towell, A. (2015). Social networking sites (SNS): exploring their uses and associated value for adolescent mothers in Western Australia in terms of social support provision and building social capital. Midwifery, 31(9), 912-919. doi: 10.1016/j.midw.2015.05.002.
Oprescu, F., Campo, S., Lowe, J., Andsager, J., & Morcuende, J. (2015). Online information exchanges for parents of children with a rare health condition: Key findings from an online support community. Journal of Medical Internet Research, 15(1), e16. doi:10.2196/jmir.2423.
Park, E., Kim, H., & Steinhoff, A. (2016). Health-related internet use by informal caregivers of children and adolescents: an integrative literature review. Journal of Medical Internet Research, 18(3), e57. doi: 10.2196/jmir.4124.
Parry, D.C., Glover, T.D., & Mulcahy, C.M. (2013). From" stroller-stalker" to" momancer" courting friends through a social networking site for mothers. Journal of Leisure Research, 45(1), 23-46. doi: 10.18666/jlr-2013-v45-i1-2941.
Pedersen, S., & Lupton, D. (in press). ‘What are you feeling right now? ’communities of maternal feeling on Mumsnet. Emotion, Space and Society. doi: 10.1016/j.emospa.2016.05.001.
Perrone, M.E., Carmody, D., Philipson, L.H., & Greeley, S.A.W. (2015). An online monogenic diabetes discussion group: supporting families and fueling new research. Translational Research, 166(5), 425-431. doi: 10.1016/j.trsl.2015.06.013.
Porter, N., & Ispa, J.M. (2013). Mothers’ online message board questions about parenting infants and toddlers. Journal of Advanced Nursing, 69(3), 559-568. doi: 10.1111/j.1365-2648.2012.06030.x.
Ramos, M.F.H., Fernandez, A.P.O., Pontes, F.A.R., & Silva, S.S.C. (2016). Caracterização das pesquisas sobre eficácia coletiva docente na perspectiva da teoria social cognitiva. Psicologia: Teoria e Pesquisa, 32(1), 91-99. doi: 10.1590/0102-37722016012227091099.
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Roffeei, S.H.M., Abdullah, N., & Basar, S.K.R. (2015). Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). International Journal of Medical Informatics, 84(5), 375-385. doi: 10.1016/j.ijmedinf.2015.01.015.
Salzmann‐Erikson, M., & Eriksson, H. (2013). Fathers sharing about early parental support in health‐care‐online discussions on an Internet forum. Health & Social Care in the Community, 21(4), 381-390. doi: 10.1111/hsc.12028.
Stewart, M., Letourneau, N., Masuda, N.R., Anderson, S., & McGhan, S. (2011). Online solutions to support needs and preferences of parents of children with asthma and allergies. Journal of Family Nursing, 17(3), 357-379. doi: 10.1177/1074840711415416.
Sullivan, C.F. (2008). Cybersupport: Empowering asthma caregivers. Pediatric Nursing, 34(3), 217-224. Recuperado de https://www.ncbi.nlm.nih.gov/pubmed/18649811.
Thuy, N.T.M., & Berry, H.L. (2013). Social capital and mental health among mothers in Vietnam who have children with disabilities. Global Health Action, 6, 254-260. doi: 10.3402/gha.v6i0.18886.
Valtchanov, B.L., Parry, D.C., Glover, T.D., & Mulcahy, C.M. (2014). Neighborhood at your fingertips: Transforming community online through a Canadian social networking site for mothers. Gender, Technology and Development, 18(2), 187-217. doi: 10.1177/0971852414529481.
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Binford Hopf, R.B., Grange, D.L., Moessner, M., & Bauer, S. (2013). Internet‐based chat support groups for parents in family‐based treatment for adolescent eating disorders: A pilot study. European Eating Disorders Review, 21(3), 215-223. doi: 10.1002/erv.2196.
Brady, E., & Guerin, S. (2010). “Not the romantic, all happy, coochy coo experience”: A qualitative analysis of interactions on an Irish parenting web site. Family Relations, 59(1), 14-27. doi: 10.1111/j.1741-3729.2009.00582.x.
Bragadóttir, H. (2008). Computer‐mediated support group intervention for parents. Journal of Nursing Scholarship, 40(1), 32-38. doi: 10.1111/j.1547-5069.2007.00203.x.
Cacioppo, C.N., Conway, L.J., Mehta, D., Krantz, I.D., & Noon, S.E. (2016). Attitudes about the use of internet support groups and the impact among parents of children with Cornelia de Lange Syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 172(2), 229-236. doi: 10.1002/ajmg.c.31504.
Cantwell, J., Muldoon, O.T., & Gallagher, S. (2014). Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 35(9), 2215-2223. doi: 10.1016/j.ridd.2014.05.012.
Clarke, J.N., & Van Ameron, G. (2015). Parents Whose Children have Oppositional Defiant Disorder Talk to One Another on the Internet. Child and Adolescent Social Work Journal, 32(4), 341-350. doi: 10.1007/s10560-015-0377-5.
Clauset, A., Newman, M.E.J., & Moore, C. (2004). Finding community structure in very large networks. Physical Review, 70(6), 1-6. doi: 10.1103/PhysRevE.70.066111.
Clifford, T., & Minnes, P. (2013). Logging on: Evaluating an online support group for parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(7), 1662-1675. doi: 10.1007/s10803-012-1714-6.
Coulson, N.S., & Greenwood, N. (2012). Families affected by childhood cancer: An analysis of the provision of social support within online support groups. Child: Care, Health and Development, 38(6), 870-877. doi:10.1111/j.1365-2214.2011.01316.x.
Craig, E.A., & Johnson, A.J. (2011). Role strain and online social support for childless stepmothers. Journal of Social and Personal Relationships, 28(6), 868-887. doi: 10.1177/0265407510393055.
Diallo, S.Y., Lynch, C.J., Gore, R., & Padilla, J.J. (2016). Identifying key papers within a journal via network centrality measures. Scientometrics, 107(3),1005–1020. doi: 10.1007/s11192-016-1891-8.
Epifanio, M. S., Genna, V., De Luca, C., Roccella, M., & La Grutta, S. (2015). Paternal and maternal transition to parenthood: the risk of postpartum depression and parenting stress. Pediatric reports, 7(2), 38-44. doi: 10.4081/pr.2015.5872.
Eriksson, H., & Salzmann‐Erikson, M. (2013). Supporting a caring fatherhood in cyberspace–an analysis of communication about caring within an online forum for fathers. Scandinavian Journal of Caring Sciences, 27(1), 63-69. doi: 10.1111/j.1471-6712.2012.01001.x.
Evans, M., Donelle, L., & Hume-Loveland, L. (2012). Social support and online postpartum depression discussion groups: A content analysis. Patient Education and Counseling, 87(3), 405-410. doi: 10.1016/j.pec.2011.09.011.
Fletcher, R., & StGeorge, J. (2011). Heading into fatherhood—nervously: Support for fathering from online dads. Qualitative Health Research, 21(8), 1101-1114. doi: 10.1177/1049732311404903.
Gabbert, T.I., Metze, B., Bührer, C., & Garten, L. (2013). Use of social networking sites by parents of very low birth weight infants: experiences and the potential of a dedicated site. European Journal of Pediatrics, 172(12), 1671-1677. doi: 10.1007/s00431-013-2067-7.
Gallagher, S., & Whiteley, J. (2012). Social support is associated with blood pressure responses in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 33(6), 2099-2105. doi: 10.1016/j.ridd.2012.06.007.
Glenn, A.D. (2015). Using online health communication to manage chronic sorrow: Mothers of children with rare diseases speak. Journal of Pediatric Nursing, 30(1), 17-24. doi: 10.1016/j.pedn.2014.09.013.
Hall, W., & Irvine, V. (2009). E‐communication among mothers of infants and toddlers in a community‐based cohort: A content analysis. Journal of Advanced Nursing, 65(1), 175-183. doi: 10.1111/j.1365-2648.2008.04856.x.
Hanneman, R., & Riddle, M. (2005). Introduction to social network methods. Riverside, CA, EUA: University of California.
Hudson, D.B., Campbell-Grossman, C., & Hertzog, M. (2012). Effects of an internet intervention on mothers’ psychological, parenting, and health care utilization outcomes. Issues in Comprehensive Pediatric Nursing, 35(3-4), 176-193. doi: 10.3109/01460862.2012.734211.
Jacobs, R., Boyd, L., Brennan, K., Sinha, C.K., & Giuliani, S. (2016). The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey. Journal of Pediatric Surgery, 51(11), 1766-1771. doi: 10.1016/j.jpedsurg.2016.07.008.
Johnson, S.A. (2015). ‘Intimate mothering publics’: comparing face-to-face support groups and Internet use for women seeking information and advice in the transition to first-time motherhood. Culture, Health & Sexuality, 17(2), 237-251. doi: 10.1080/13691058.2014.968807.
Kirk, S., & Milnes, L. (2016). An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expectations, 19(2), 309-321. doi: 10.1111/hex.12352.
Laniado, D., Volkovich, Y., Kappler, K., & Kaltenbrunner, A. (2016). Gender homophily in online dyadic and triadic relationships. EPJ Data Science, 5(19), 1-23. doi: 10.1140/epjds/s13688-016-0080-6.
Lee, R.L., & Kvasny, L. (2014). Understanding the role of social media in online health: A global perspective on online social support. First Monday, 19(1). doi: 10.5210/fm.v19i1.4048.
Lewis, T.G. (2009). Network science: Theory and practice. Hoboken, NJ, EUA: John Wiley & Sons, Inc.
Lin, T.C., Hsu, J.S.C., Cheng, H.L., & Chiu, C.M. (2015). Exploring the relationships between receiving and offering online social support: A dual social support model. Information & Management, 52(3), 371-383. doi: 10.1016/j.im.2015.01.003.
Lovell, B., Moss, M., & Wetherell, M.A. (2012). With a little help from my friends: Psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Research in Developmental Disabilities, 33(2), 682-687. doi: 10.1016/j.ridd.2011.11.014.
Martin, S., Roderick, M.C., Lockridge, R., Toledo-Tamula, M.A., Baldwin, A., Knight, P., & Wolters, P. (2016). Feasibility and preliminary efficacy of an internet support group for parents of a child with neurofibromatosis type 1: a pilot study. Journal of genetic counseling, 26(3), 576-585. doi: 10.1007/s10897-016-0031-1.
Martin, S., Wolters, P.L., Baldwin, A., Roderick, M.C., Toledo-Tamula, M.A., Gillespie, A., & Widemann, B. (2014). Attitudes about internet support groups among adolescents and young adults with neurofibromatosis type 1 and their parents. Journal of Genetic Counseling, 3(26), 576-585. doi: 10.1007/s10897-016-0031-1.
Mendes, K.D.S., Silveira R.C.C.P., & Galvão, C.M. (2008). Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto Enfermagem, 17(4), 758-64. Recuperado de http://www.redalyc.org/html/714/71411240017/.
Morris, H., & Bertram, D. (2013). Therapist utilization of online social support for parents of premature infants. Contemporary Family Therapy, 35(3), 583-598. doi: 10.1007/s10591-013-9239-5.
Mustafa, H.R., Short, M., & Fan, S. (2015). Social support exchanges in Facebook social support group. Procedia-Social and Behavioral Sciences, 185, 346-351. doi: 10.1016/j.sbspro.2015.03.449.
Niela-Vilén, H., Axelin, A., Salanterä, S., & Melender, H. L. (2014). Internet-based peer support for parents: A systematic integrative review. International Journal of Nursing Studies, 51(11), 1524-1537. doi: 10.1016/j.ijnurstu.2014.06.009.
Nolan, S., Hendricks, J., & Towell, A. (2015). Social networking sites (SNS): exploring their uses and associated value for adolescent mothers in Western Australia in terms of social support provision and building social capital. Midwifery, 31(9), 912-919. doi: 10.1016/j.midw.2015.05.002.
Oprescu, F., Campo, S., Lowe, J., Andsager, J., & Morcuende, J. (2015). Online information exchanges for parents of children with a rare health condition: Key findings from an online support community. Journal of Medical Internet Research, 15(1), e16. doi:10.2196/jmir.2423.
Park, E., Kim, H., & Steinhoff, A. (2016). Health-related internet use by informal caregivers of children and adolescents: an integrative literature review. Journal of Medical Internet Research, 18(3), e57. doi: 10.2196/jmir.4124.
Parry, D.C., Glover, T.D., & Mulcahy, C.M. (2013). From" stroller-stalker" to" momancer" courting friends through a social networking site for mothers. Journal of Leisure Research, 45(1), 23-46. doi: 10.18666/jlr-2013-v45-i1-2941.
Pedersen, S., & Lupton, D. (in press). ‘What are you feeling right now? ’communities of maternal feeling on Mumsnet. Emotion, Space and Society. doi: 10.1016/j.emospa.2016.05.001.
Perrone, M.E., Carmody, D., Philipson, L.H., & Greeley, S.A.W. (2015). An online monogenic diabetes discussion group: supporting families and fueling new research. Translational Research, 166(5), 425-431. doi: 10.1016/j.trsl.2015.06.013.
Porter, N., & Ispa, J.M. (2013). Mothers’ online message board questions about parenting infants and toddlers. Journal of Advanced Nursing, 69(3), 559-568. doi: 10.1111/j.1365-2648.2012.06030.x.
Ramos, M.F.H., Fernandez, A.P.O., Pontes, F.A.R., & Silva, S.S.C. (2016). Caracterização das pesquisas sobre eficácia coletiva docente na perspectiva da teoria social cognitiva. Psicologia: Teoria e Pesquisa, 32(1), 91-99. doi: 10.1590/0102-37722016012227091099.
Reinke, J.S., & Solheim, C.A. (2015). Online social support experiences of mothers of children with autism spectrum disorder. Journal of Child and Family Studies, 24, 2364-2373. doi: 10.1007/s10826-014-0039-9.
Roffeei, S.H.M., Abdullah, N., & Basar, S.K.R. (2015). Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). International Journal of Medical Informatics, 84(5), 375-385. doi: 10.1016/j.ijmedinf.2015.01.015.
Salzmann‐Erikson, M., & Eriksson, H. (2013). Fathers sharing about early parental support in health‐care‐online discussions on an Internet forum. Health & Social Care in the Community, 21(4), 381-390. doi: 10.1111/hsc.12028.
Stewart, M., Letourneau, N., Masuda, N.R., Anderson, S., & McGhan, S. (2011). Online solutions to support needs and preferences of parents of children with asthma and allergies. Journal of Family Nursing, 17(3), 357-379. doi: 10.1177/1074840711415416.
Sullivan, C.F. (2008). Cybersupport: Empowering asthma caregivers. Pediatric Nursing, 34(3), 217-224. Recuperado de https://www.ncbi.nlm.nih.gov/pubmed/18649811.
Thuy, N.T.M., & Berry, H.L. (2013). Social capital and mental health among mothers in Vietnam who have children with disabilities. Global Health Action, 6, 254-260. doi: 10.3402/gha.v6i0.18886.
Valtchanov, B.L., Parry, D.C., Glover, T.D., & Mulcahy, C.M. (2014). Neighborhood at your fingertips: Transforming community online through a Canadian social networking site for mothers. Gender, Technology and Development, 18(2), 187-217. doi: 10.1177/0971852414529481.
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Published
2020-05-12
How to Cite
Dias, T. da S. ., Pontes, F. A. R. ., de Almeida, H. C. ., Rosa, T. dos S. ., Ramos, M. F. H. ., & Silva, S. S. da C. . (2020). Online social support among caregivers of children and youth: networked integrative literature review. Ciencias Psicológicas, 14(1), e-2160. https://doi.org/10.22235/cp.v14i1.2160
Issue
Section
ORIGINAL ARTICLES
