Parents’ perspectives on care of children with autistic spectrum disorder in South Asia – Views from Pakistan and India

References

• Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP). Lancet, 368(9531), 210–215.
   PubMed Web of Science ®Google Scholar
• CIA. (2013). The World Factbook 2013–14. Washington, DC: Central Intelligence Agency. https://www.cia.gov/library/publications/the-world-factbook/index.html
   Google Scholar
• Collins, P.Y., Patel, V., Joestl, S.S., March, D., Insel, T.R., & Daar, A.S. (2011). Grand challenges in global mental health. Nature, 475(7354), 27–30.
   PubMed Web of Science ®Google Scholar
• Daley, T. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science and Medicine, 58, 1323–1335.
   PubMed Web of Science ®Google Scholar
• Desai, M.U., Divan, G., Wertz, F.J, & Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49, 613–637.
   PubMedGoogle Scholar
• Divan, G., Vajaratkar, V., Desai, M.U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5, 190–200.
   PubMed Web of Science ®Google Scholar
• Dua, T., Barbui, C., Clark, N., Fleischmann, A., Poznyak, V., van Ommeren, M., ... Saxena, S. (2011). Evidence-based guidelines for mental, neurological, and substance use disorders in low- and middle-income countries: Summary of WHO recommendations. PLoS Medicine, 8, e1001122.
   PubMed Web of Science ®Google Scholar
• Elsabbagh, M., Divan, G., Koh, Y., Kim, Y.S., Kauchali, A., Marcin, C., … Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5, 160–179.
   PubMed Web of Science ®Google Scholar
• Gomes, P.T., Lima, L.H., Bueno, M.K., Arau jo, L.A., & Souza, N.M. (2015). Autism in Brazil: A systematic review of family challenges and coping strategies. Jornal de Pediatria (Rio J), 91(2), 111–121.
   PubMedGoogle Scholar
• Hamdani, S.U., Atif, N., Tariq, M., Minhas, F.A., Iqbal, Z., & Rahman, A. (2014). Family networks to improve outcomes in children with intellectual and developmental disorders: a qualitative study. International Journal of Mental Health Systems, 8, 7.
   PubMedGoogle Scholar
• Howlin, P. (2013). Social disadvantage and exclusion: adults with autism lag far behind in employment prospects. Journal of American Academy of Child and Adolescent Psychiatry, 52, 897–899.
   PubMed Web of Science ®Google Scholar
• Karim, S., Saeed, K., Rana, M.H., Mubbashar, M.H., & Jenkins, R. (2004). Pakistan mental health country profile. International Review of Psychiatry, 16, 83–92.
   PubMed Web of Science ®Google Scholar
• Karst, J.S., & Hecke, A.V.V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15, 247–277.
   PubMed Web of Science ®Google Scholar
• Kendall, T., Megnin-Viggars, O., Nick Gould, N., Burt, L.B., & Baird, G. (2013). Management of autism in children and young people: Summary of NICE and SCIE guidance. British Medical Journal, 347, f4865.
   PubMedGoogle Scholar
• Kieling, C., Baker-Henningham, H., Belfer, M., Conti, G., Ertem, I., Omigbodun, O., … Rahman, A. (2011). Child and adolescent mental health worldwide: Evidence for action. Lancet, 378, 1515–1525.
   PubMed Web of Science ®Google Scholar
• Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13, 317–336.
   PubMed Web of Science ®Google Scholar
• Krishnamurthy, V.A. (2008). Clinical experience of autism in India. Journal of Developmental and Behavioural Pediatrics, 29, 331–333.
   PubMed Web of Science ®Google Scholar
• Lingam, R., Gupta, P., Zafar, S., Hill, Z., Yousafzai, A., Iyengar, S., … Kirkwood, B. (2014). Understanding care and feeding practices: Building blocks for a sustainable intervention in India and Pakistan. Annals of the New York Academy of Sciences, 1308, 204–217.
   PubMed Web of Science ®Google Scholar
• Mirza, I., Tareen, A., Davidson, L.L., & Rahman, A. (2009). Community management of intellectual disabilities in Pakistan: A mixed methods study. Journal of Intellectual Disability Research, 53, 559–570.
   PubMed Web of Science ®Google Scholar
• Neonatal Mortality Formative Research Working Group. (2008). Developing community-based intervention strategies to save newborn lives: Lessons learned from formative research in five countries. Journal of Perinatology, 28(Suppl.2), S2–8.
   PubMedGoogle Scholar
• Patel, V., & Thornicroft, G. (2009). Packages of care for mental, neurological, and substance use disorders in low- and middle-income countries:PLoS Medicine, 6, e1000160.
   PubMed Web of Science ®Google Scholar
• Rahman, A., Patel, V., Maselko, J., & Kirkwood, B. (2008). The neglected ‘m’ in MCH programmes – Why mental health of mothers is important for child nutrition. Tropical Medicine and International Health, 13, 579–583.
   PubMed Web of Science ®Google Scholar
• Rahman, A., Mubbashar, M., Harrington, R., & Gater, R. (2000). Developing child mental health services in developing countries. Journal of Child Psychology and Psychiatry, 4, 539–546.
   Google Scholar
• Rahman, A., Mubbashar, M.H., Gater, R., & Goldberg, D. (1998). Randomised trial of impact of school mental-health programme in rural Rawalpindi, Pakistan. Lancet, 352(9133), 1022–1025.
   PubMedGoogle Scholar
• Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman & R. Burgess (Eds), Analyzing Qualitative Data (pp. 173–194). London: Routledge.
   Google Scholar
• Saeed, K., Gater, R., Hussain, A., & Mubbashar, M. (2000). The prevalence, classification and treatment of mental disorders among attenders of native faith healers in rural Pakistan. Social Psychiatry and Psychiatric Epidemiology, 35, 480–485.
   PubMed Web of Science ®Google Scholar
• Sarkadi, A., & Bremberg, S. (2005). Socially unbiased parenting support on the Internet: A cross-sectional study of users of a large Swedish parent website. Child: Care, Health and Development, 31, 43–52.
   PubMed Web of Science ®Google Scholar
• Sarkar, S. (2014). Ethical issues relating to faith healing practices in South Asia: A medical perspective. Journal of Clinical Research and Bioethics, 5, 4.
   Google Scholar
• Tomlinson, M., Rahman, A., Sanders, D., Maselko, J., & Rotheram-Borus, M.J. (2014). Leveraging paraprofessionals and family strengths to improve coverage and penetration of nutrition and early child development services. Annals of the New York Academy of Sciences, 1308, 162–171.
   PubMedGoogle Scholar
• Tripathy, P., Nair, N., Barnett, S., Mahapatra, R., Borghi, J., Rath, S., … Costello, A. (2010). Effect of a participatory intervention with women's groups on birth outcomes and maternal depression in Jharkhand and Orissa, India: A cluster-randomised controlled trial. Lancet, 375(9721), 1182–1192.
   PubMedGoogle Scholar
• Twoy, R., Connolly, P.M., & Novak, J.M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19, 251–260.
   PubMed Web of Science ®Google Scholar
• UNICEF (United Nations Children's Fund). (2014). The State of the World's Children 2014: In numbers. New York: United Nations Children's Fund.
   Google Scholar
• Vaidya, S. (2009). A sociological study of families with autism in Delhi: Issues and challenges. Paper presented at the Asian Pacific Autism Conference, Sydney, Australia.
   Google Scholar
• Wachs, T.D., Black, M.M., & Engle, P.L. (2009). Maternal depression: A global threat to children's health, development, and behavior and to human rights. Child Development Perspectives, 3, 51–59.
   Web of Science ®Google Scholar
• World Bank. (2014). Washington: The World Bank. Retrieved 8 October 2014 from http://data.worldbank.org/
   Google Scholar
• World Health Organization. (2010). mhGAP Intervention Guide for Mental, Neurological and Substance Use Disorders in Non-Specialized Health Settings. Geneva: World Health Organization.
   Google Scholar
• Zafar, S., Sikander, S., Haq, Z., Hill, Z., Lingam, R., Skordis-Worrall, J., … Rahman, A.(2014). Integrating maternal psychosocial well-being into a child-development intervention: The five-pillars approach. Annals of the New York Academy of Sciences, 1308, 107–117.
   PubMed Web of Science ®Google Scholar