Mothering at a distance and disclosure of maternal HIV to children in Kingston, Jamaica

Open access

Abstract

Existing guidelines (WHO, 2011) advise caretakers and professionals to disclose children’s and their caretakers’ HIV status to children, despite a lack of evidence concerning the potential implications in resource-constrained settings. Our research uses feminist Interpretative Phenomenological Analysis (IPA) to explore the experiences of HIV positive mothers in Kingston, Jamaica, focusing on their lived experiences of talking to their children about maternal HIV. This paper will focus on the concept of mothering at a distance and how this presents additional challenges for HIV positive mothers who are trying to establish emotional closeness in relation to talking to their children about their HIV. Using Hochschild’s concept of emotion work and examples from the interviews, we highlight the difficult contexts informing women’s decisions when negotiating discussions about their HIV. Women may choose full, partial or differential disclosure or children may be told their mother’s HIV status by others. Disclosure policy, we argue, reflects Anglo-Northern constructions of the family and parenting which may not adequately reflect the experiences of poor urban mothers in low and middle income countries. We argue that policy needs to recognise culturally-specific family formations, which, in Jamaica includes absent fathers, mothering at a distance and mothering non-biological children. This article reflects on the experiences of an under-researched group, poor urban Jamaican women practising mothering at a distance, using a novel methodological approach (IPA) to bring into relief unique insights into their lived experiences and will contribute to the global policy and research literature on HIV disclosure.

Allison, S. and Siberry, G. (2015) ‘National Institutes of Health investment in studies of HIV disclosure to children.’, AIDS, 29(March), pp. S109–S118.

Armistead, L., Tannenbaum, L., Forehand, R., Morse, E. and Morse, P. (2001) ‘Disclosing HIV status: Are mothers telling their children?’, Journal of Pediatric Psychology, 26(1), pp. 11–20. doi: 10.1093/jpepsy/26.1.11.

Barrow, C. (1996) Family in the Caribbean: themes and perspectives. Kingston, Jamaica: Ian Randle Publishers.

Bordo, S. (1997) ‘Material girl: The effacements of postmodern culture’, in Lancaster, R. and di Leonardo, M. (eds) The Gender/Sexuality Reader: Culture, History, Political Economy. London: Routledge, pp. 335–358.

Bowlby, J. (1969) Attachment and loss, Vol. 1: Attachment. New York: Basic Books.

Brodsky, A. E. and Faryal, T. (2006) ‘No matter how hard you try, your feet still get wet: Insider and outsider perspectives on bridging diversity’, American Journal of Community Psychology. doi: 10.1007/s10464-006-9015-x.

Burman, E. (2006) ‘Emotions and reflexivity in feminised education action research’, Educational Action Research, 14(3), pp. 315–332. doi: 10.1080/09650790600847636.

Cassidy, F. and Le Page, R. B. (1980) Dictionary of Jamaican English. Cambridge: Cambridge University Press.

Chaudoir, S. R. and Quinn, D. M. (2010) ‘Revealing concealable stigmatized identities: The impact of disclosure motivations and positive first-disclosure experiences on fear of disclosure and well-being.’, Journal of Social Issues, 66, pp. 570–584. doi: doi:10.1111/j.1540-4560.2010.01663.x.

Conserve, D. F., Eustache, E., Oswald, C. M., Louis, E., King, G., Scanlan, F., Mukherjee, J. S. and Surkan, P. J. (2014) ‘Disclosure and Impact of Maternal HIV+ Serostatus on Mothers and Children in Rural Haiti’, Maternal and Child Health Journal, 18(10), pp. 2309–2315. doi: 10.1007/s10995-013-1375-x.

Dwyer, S. C. and Buckle, J. L. (2009) ‘The Space Between: On Being an Insider-Outsider in Qualitative Research’, International Journal of Qualitative Methods, 8(1), pp. 54–63. doi: 10.1177/160940690900800105.

Ellis, P. (1986) Women of the Caribbean. London: Zed Books Ltd.

Evans, H. and Davies, R. (1997) ‘Overview of issues in Childhood Socialisation in the Caribbean’, in Roopnarine, J., L., and Brown, J. (ed.) Caribbean Families: Diversity among Ethnic Groups. Greenwich, CT: Ablex., pp. 1–24.

Gachanja, G. (2014) ‘A couple’s marital disharmony and its psychological effects on their children during the HIV disclosure process in Kenya’, PeerJ. doi: 10.7287/peerj.preprints.419v1.

Gachanja, G. and Burkholder, G. J. (2014) ‘HIV-Positive Parents’ Accounts on Disclosure Preparation Activities in Kenya’, Journal of social,Behaviour and Health Science, 8(1), pp. 18–37. doi: 10.5590/JSBHS.2014.08.1.02.

Gachanja, G. and Burkholder, G. J. (2016) ‘A model for HIV disclosure of a parent’s and/or a child’s illness’, PeerJ, 4, pp. 1–24. doi: 10.7717/peerj.1662.

Gachanja, G., Burkholder, G. J. and Ferraro, A. (2014) ‘HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya’, PeerJ, pp. 1–22. doi: 10.7717/peerj.486.

Geiselhart, K., Gwebu, T. D. and Krüger, F. (2008) ‘Children, Adolescents and the HIV and AIDS Pandemic: Changing Inter-Generational Relationships and Intra-Family Communication Patterns in Botswana Introduction: The Social Impact of HIV and AIDS on Families and Children’, Children, Youth and Environments, 18(1), pp. 99–125.

Hays, S. (1996) The Cultural Contradictions of Motherhood. New Haven: Yale University Press.

Hochschild, A. R. (1979) ‘Emotion Work, Feeling Rules, and Social Structure’, American Journal of Sociology, 85(3), pp. 551–575. doi: 10.1086/227049.

Hochschild, A. R. (1983) The Managed Heart: Commercialization of Human Feeling. Berkeley, CA: University of California Press.

Hondagneu-Sotelo, P. and Avila, E. (1997) ‘I’m here but I’m there:The meaning of Latina transnational motherhood’, Gender and Society, 11(5), pp. 548–571.

Jamaican Ministry of Health (2014) Jamaica: Country Progress Report (Global AIDS Response Progress Report). Kingston.

Krauss, B. J., Letteney, S., De Baets, A. J., Baggaley, R.and Okero, F. A. (2012) ‘Caregiver’s HIV disclosure to children 12 years and under: A review and analysis of the evidence’, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, iFirst, pp. 1–15. doi: 10.1080/09540121.2012.712664.

Kyaddondo, D., Wanyenze, R. K., Kinsman, J. and Hardon, A. (2013) ‘Disclosure of HIV status between parents and children in Uganda in the context of greater access to treatment’, Sahara J, 10(SUPPL.1). doi: 10.1080/02664763.2012.755323.

Leo-Rhynie, E. A. (1996) ‘Class, Race, and Gender Issues in Child Rearing in the Caribbean’, in Roopnarine, J., L., and Brown, J. (ed.) Caribbean Families: Diversity among Ethnic Groups,. Greenwich, CT: Ablex.

Letteney, S. (2006) ‘Mothers’ disclosure of maternal HIV status to children: key psychosocial correlates.’, Journal of HIV/ AIDS & Social Services. Taylor & Francis Ltd, 5(1), pp. 67–84.

Leve, M., Rubin, L. and Pusic, A. (2011) ‘Cosmetic surgery and neoliberalisms: Managing risk and responsibility’, Feminism & Psychology, 22(1), pp. 122–141. doi: 10.1177/0959353511424361.

Lupton, D. (2011) ‘“The best thing for the baby”: Mothers’ concepts and experiences related to promoting their infant’s health and development.’, Health Risk Soc., 13, pp. 637–651.

Madiba, S. and Matlala, C. (2012) ‘Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the Era of HAART in South Africa’, World Journal of AIDS, 2, pp. 194–202. doi: 10.4236/wja.2012.23025.

Moore, A., Kalanzi, D. N. and Amey, F. K. (2008) ‘To disclose or not to disclose? Lower class parents living with HIV/AIDS in Lome, Togo’, International Journal of Sociology and Social Policy, 28(9/10), pp. 351–364. doi: 10.1108/01443330810900194.

Mullings, B. (1999) ‘Insider or outsider, both or neither: some dilemmas of interviewing in a cross-cultural setting.’, Geoforum, 30(4), pp. 337–350.

Muparamoto, N. and Chiweshe, M. K. (2015) ‘“Managing identities” and parental disclosure of HIV sero-status in Zimbabwe’, African Journal of AIDS Research, 14(2), p. 145–152,.

Obermeyer, C. M., Baijal, P. and Pegurri, E. (2011) ‘Facilitating HIV disclosure across diverse settings: A review.’, American Journal of Public Health, 101(6), pp. 1011–1023. doi: 10.2105/AJPH.2010.300102.

PAHO/WHO (2010) Jamaica Country Cooperation Strategy 2010 – 2015.

Palin, F. L., Armistead, L., Clayton, A., Ketchen, B., Lindner, G., Kokot-Louw, P. and Pauw, A. (2009) ‘Disclosure of maternal HIV-infection in South Africa: Description and relationship to child functioning’, AIDS and Behavior, 13(6), pp. 1241–1252. doi: 10.1007/s10461-008-9447-4.

Parrenas, R. (2001) Servants of Globilization. Stanford: Stanford University Press.

Phoenix, A. (2010) ‘Transforming “non-normative” motherhood: Retrospective accounts of transnational motherhood in serial migration’, Radical Psychology, 9(2).

Pollard, V. (2013) ‘Mothering and Migration:The Ones They Left Behind’, in Silva, D. S. and A. S. A. J. (ed.) Feminist and Critical Perspectives on Caribbean Mothering. New Jersey: Africa World Press.

Qiao, S., Li, X. and Stanton, B. (2011) ‘Disclosure of parental HIV infection to children: A systematic review of global literature’, AIDS and Behavior, pp. 369–389. doi: 10.1007/s10461-011-0069-x.

Rochat, T. J., Arteche, A. X., Stein, A., Mitchell, J. and Bland, R. M. (2015) ‘Maternal and child psychological outcomes of HIV disclosure to young children in rural South Africa: the Amagugu intervention.’, AIDS, 29 Suppl 1(March), pp. S67-79. doi: 10.1097/QAD.0000000000000668.

Rochat, T. J., Arteche, A. X., Stein, A., Mkwanazi, N. and Bland, R. M. (2014) ‘Maternal HIV disclosure to young HIV-uninfected children’, AIDS. Lippincott Williams & Wilkins, 28(3), pp. S331–S341. doi: 10.1097/QAD.0000000000000333.

Rochat, T. J., Bland, R., Coovadia, H., Stein, A. and Newell, M.-L. (2011) ‘Towards a family-centered approach to HIV treatment and care for HIV-exposed children, their mothers and their families in poorly resourced settings’, Future Virology, 6(6), pp. 687–696. doi: 10.2217/fvl.11.45.

Rochat, T. J., Mitchell, J., Lubbe, A. M., Stein, A., Tomlinson, M. and Bland, R. M. (2017) ‘Communication about HIV and death: Maternal reports of primary school-aged children’s questions after maternal HIV disclosure in rural South Africa’, Social Science and Medicine, 172, pp. 124–134.

Rochat, T. J., Mitchell, J., Stein, A., Mkwanazi, N. B. and Bland, R. M. (2016) ‘The Amagugu intervention: a conceptual framework for increasing HIV disclosure and parent-led communication about health among HIV-infected parents with HIV-uninfected primary school-aged children’, Front. Public Health 4:183., 4, p. 183. doi: doi: 10.3389/fpubh.2016.00183.

Rochat, T. J., Mkwanazi, N. and Bland, R. (2013) ‘Maternal HIV disclosure to HIV-uninfected children in rural South Africa: A pilot study of a family-based intervention’, BMC Public Health, 13(1), p. 147. doi: 10.1186/1471-2458-13-147.

Russell-Brown, P. A., Norville, B. and Griffith, C. (1997) ‘Child shifting: a survival strategy for teenage mothers’, in Roopnarine, J. L. and Brown, J. (eds) Caribbean families: diversity among ethnic groups. Greenwich, Conn: Ablex Publishing Corporation, pp. 223–242.

Shenton, A. K. and Hayter, S. (2004) ‘Strategies for gaining access to organisations and informants in qualitative studies’, Education for Information. IOS Press, 22, pp. 223–231.

Silva, D. S. and Alexander, S. A. J. (2013) Feminist and Critical Perspectives on Caribbean Mothering. Trenton, New Jersey: Africa World Press.

Sin, S. (2010) ‘Considerations of Quality in Phenomenographic Research’, International Journal of Qualitative Methods, 9(4).

Smith, J. A. (1996) ‘Beyond the divide between cognition and discourse: using Interpretative Phenomenological Analysis in health psychology’, Psychology and Health, 11, pp. 261–271.

Smith, J. A., Flower, P. and Larkin, M. (2009) Interpretative Phenomenological Analysis: Theory, Method and Research. London: Sage. doi: 10.1080/14780880903340091.

Smith, J. and Osborn, M. (2003) ‘Interpretive phenomenological analysis’, in Smith, J. A. (ed.) Qualitative psychology: A practical guide to research methods. London: Sage, pp. 51–80.

Tarule, M. J. (1996) ‘Voices in dialogue: Collaborative ways of knowing’, in Goldberger, N. R., Tarule, J. M., Clinchy, B. M., and Belenky, M. F. (eds) Knowledge, Difference, and Power: Essays Inspired by Women’s Ways of Knowing. New York: Basic Books, pp. 274–304.

Tenzek, K. E., Herrman, A. R., May, A. R., Feiner, B. and Allen, M. (2013) ‘Examining the Impact of Parental Disclosure of HIV on Children: A Meta-Analysis’, Western Journal of Communication, 77(3), pp. 323–339.

Tiendrebeogo, G., Hejoaka, F., Belem, E. M., Compaoré, P. L. G., Wolmarans, L., Soubeiga, A. and Ouangraoua, N. (2013) ‘Parental HIV disclosure in Burkina Faso: Experiences and challenges in the era of HAART’, SAHARA-J: Journal of Social Aspects of HIV/AIDS, 10(sup1), pp. S46–S59. doi: 10.1080/02664763.2012.755334.

Tompkins, T. L. (2007) ‘Disclosure of maternal HIV status to children: To tell or not to tell ... That is the question’, Journal of Child and Family Studies, 16(6), pp. 773–788. doi: 10.1007/s10826-006-9124-z.

WHO (2011) Guideline on HIV Disclosure counselling for children up to 12 years of age. Geneva.

Wiener, L., Mellins, C. A., Marhefka, S. and Battles, H. B. (2007) ‘Disclosure of an HIV diagnosis to children: history, current research, and future directions.’, Journal of developmental and behavioral pediatrics : JDBP, 28(2), pp. 155–66. doi: 10.1097/01.DBP.0000267570.87564.cd.

Wiener, L. S., Battles, H. B. and Heilman, N. E. (1998) ‘Factors associated with parents’ decision to disclose their HIV diagnosis to their children.’, Child Welfare, 77(2), pp. 115–135.

Population Horizons

Analysis and debate on policy questions raised by population change

Journal Information

Metrics

All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 200 200 8
PDF Downloads 113 113 6