Skip to main content
SpringerLink
Log in

Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy

  • Original Article
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

It has been argued that Down syndrome (DS) is as much a cultural creation as a biomedical condition, yet the majority of research in this area has been conducted in ‘Western’ cultures. This study explored parents’ experiences of their child with DS in Pakistan and their views on abortion for the condition. Thirty mothers and fathers of children with DS took part in qualitative interviews. Transcripts were thematically analysed. Parents used Islamic discourse to frame positive personal meanings of their child’s condition. These were contrasted with personal experiences of stigmatisation and rejection by family and community. An ambivalent cultural stereotype was revealed that characterised people with DS as abnormal and objects of pity but also as being closer to God and bringers of good fortune. Views on termination varied, but parents were generally supportive of the availability of abortion for DS due to the social stigmatisation they experienced. The findings reveal how parents negotiated their religious beliefs alongside personal experiences to inform personal views on abortion for DS. Advice to other parents about termination was rooted in Islamic discourse but emphasised pragmatic concerns about the impact of having a family member with intellectual disability in Pakistan.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Ahmed S, Saleem M, Sultana N, Raashid Y, Waqar A, Anwar M, Modell B, Karamat KA, Petrou M (2000) Prenatal diagnosis of beta-thalassaemia in Pakistan: experience in a Muslim country. Prenat Diagn 20:378–383

    Article  PubMed  CAS  Google Scholar 

  • Ahmed S, Atkin K, Hewison J, Green J (2006) The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. Prenat Diagn 26:801–809

    Article  PubMed  Google Scholar 

  • Ahmed S, Ahmed M, Sharif SM, Sherridan E, Taylor GR (2012a) Attitudes towards prenatal testing and termination of pregnancy in British Pakistani parents and relatives of children with recessive conditions in the UK. Prenat Diagn 32(10):954–9

    Article  PubMed  CAS  Google Scholar 

  • Ahmed S, Bryant LD, Tizro Z, Shickle D (2012b) Interpretations of informed choice in antenatal screening: a cross-cultural, Q-methodology study. Soc Sci Med 74:997–1004

    Article  PubMed  Google Scholar 

  • Alsulaiman A, Hewison J (2007) Attitudes to prenatal testing and termination of pregnancy in Saudi Arabia. Community Genet 10(3):169–173

    Article  PubMed  Google Scholar 

  • Arif MO, Fatmi Z, Pardeep B, Ali T, Iqbal H, Bangash HK, Pervaiz R, Altaf H, Baba JA (2008) Attitudes and perceptions about prenatal diagnosis and induced abortion among adults of Pakistani population. Prenat Diagn 28:1149–1155

    Article  PubMed  Google Scholar 

  • Barnes C, Mercer G, Shakespeare T (1999) Exploring disability: A sociological introduction. Polity Press, Cambridge

    Google Scholar 

  • Bazna MS, Hatab TA (2005) Disability in the Qur’an: the Islamic alternative to defining, viewing, and relating to disability. J Relig Disabil Health 9:2–27

    Google Scholar 

  • Bruns D, Foerster K (2011) ‘We’ve been through it all together’: supports for parents with children with rare trisomy conditions. J Intell Disabil Res 55:361–369

    Article  PubMed  CAS  Google Scholar 

  • Bryant LD, Hewison J, Green JM (2005) Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down’s syndrome. J Reprod Infant Psychol 23:179–196

    Article  Google Scholar 

  • Bryant LD, Green JM, Hewison J (2006) Understandings of Down’s syndrome: a Q methodological investigation. Soc Sci Med 63:1188–1200

    Article  PubMed  Google Scholar 

  • Bryant LD, Ahmed S, Ahmed M, Jafri H, Raashid Y (2011) All is done by Allah. Understandings of Down syndrome and prenatal testing in Pakistan. Soc Sci Med 72:1393–1399

    Article  PubMed  Google Scholar 

  • Bywaters P, Ali Z, Fazil Q, Wallace LM, Singh G (2003) Attitudes towards disability amongst Pakistani and Bangladeshi parents of disabled children in the UK: considerations for service providers and the disability movement. Health Soc Care Comm 11:502–509

    Article  Google Scholar 

  • Carr J (2005) Families of 30–35-year olds with Down’s syndrome. J Appl Res Intellect Disabil 18:75–84

    Article  Google Scholar 

  • Coleridge P (1993) Disability, liberation and development. Oxfam, Oxford

    Google Scholar 

  • Croot EJ, Grant G, Cooper CL, Mathers N (2008) Perceptions of the causes of childhood disability among Pakistani families living in the UK. Health Soc Care Comm 16:606–613

    Article  CAS  Google Scholar 

  • Cunningham-Burley S, Kerr A (1999) Defining the ‘social’: towards an understanding of scientific and medical discourses on the social aspect of the new genetics. Soc Health Illness 21:647–668

    Article  Google Scholar 

  • Daudji A, Eby S, Foo T, Ladak F, Sinclair C, Landry MD, Moody K, Gibson BE (2011) Perceptions of disability among south Asian immigrant mothers of children with disabilities in Canada: implications for rehabilitation service delivery. Disabil Rehabil 33:511–521

    Article  PubMed  Google Scholar 

  • Department of Education and Skills (2006) It’s not as simple as you think: cultural viewpoints around disability. Department of Education and Skills, London

    Google Scholar 

  • Diken IH (2006) An overview of parental perceptions in cross-cultural groups on disability. Child Educ 82:236–240

    Article  Google Scholar 

  • Edwardraj S, Mumtaj K, Prasad JH, Kuruvilla A, Jacob KS (2010) Perceptions about intellectual disability: a qualitative study from Vellore, South India. J Intell Disabil Res 54:736–748

    Article  CAS  Google Scholar 

  • Fishman RHB (1994) Changing attitudes to Down’s syndrome. Lancet 344:536

    Google Scholar 

  • Ghai A (2001) Marginalisation and disability: Experiences from the Third World. In: Priestley M (ed) Disability and the life course: A global perspective. Cambridge University Press, Cambridge, pp 16–37

    Google Scholar 

  • Glasson EJ, Sullivan SG, Hussain R, Petterson BA, Montgomery PD, Bittles AH (2002) The changing survival profile of people with Down’s syndrome: implications for genetic counselling. Clin Genet 62:390–393

    Article  PubMed  CAS  Google Scholar 

  • Goddard J, Lehr R, Lapadat J (2000) Parents of children with disabilities: telling a different story. Can J Couns 34:273–289

    Google Scholar 

  • Green SE (2004) The impact of stigma on maternal attitudes toward placement of children with disabilities in residential care facilities. Soc Sci Med 59:799–812

    Article  PubMed  Google Scholar 

  • Groce NE, Zola IK (1993) Multiculturalism, chronic illness, and disability. Pediatrics 91:1048–1055

    PubMed  CAS  Google Scholar 

  • Hsiao CY, Van RM (2011) Individual and family adaptation in Taiwanese families living with down syndrome. J Fam Nurs 17:182–201

    Article  PubMed  Google Scholar 

  • Ingstad B (1995) Mpho ya Modimo—a gift from God: perspective son ‘attitudes’ towards disabled persons. In: Ingstad B, Whyte SR (eds) Disability and culture. University of California Press, Berkeley, pp 246–266

    Google Scholar 

  • Ingstad B (1999) The myth of disability in developing nations. Lancet 354:757–758

    Article  PubMed  CAS  Google Scholar 

  • Ingstad B (2007) Seeing disability and human rights in the local context: Botswana revisited. In: Ingstad B, Whyte SR (eds) Disability in local and global worlds. University of California Press, Berkeley, pp 237–258

    Google Scholar 

  • Katbamna S, Ahmad W, Bhakta P, Baker R, Parker G (2004) Do they look after their own? Informal support for South Asian carers. Health Soc Care Comm 12:398–406

    Article  Google Scholar 

  • Kaye J, Rahgavan SK (2002) Spirituality in disability and illness. J Relig Health 21:231–242

    Article  Google Scholar 

  • Landsman G (1999) Does God give special kids to special parents? Personhood and the child with disabilities as gift and giver. In: Layne L (ed) Transformative motherhood: On giving and getting in a consumer culture. New York University Press, New York

    Google Scholar 

  • Lassetter JH, Mandleco BL, Roper SO (2007) Family photographs: expressions of parents raising children with disabilities. Qual Health Res 17:456–467

    Article  PubMed  Google Scholar 

  • Maloni PK, Despres ER, Habbous J, Primmer AR, Slatten JB, Gibson BE, Landry MD (2010) Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disabil Rehabil 32:845–854

    Article  PubMed  Google Scholar 

  • Michie M, Skinner D (2010) Narrating disability, narrating religious practice: reconciliation and fragile X syndrome. Intellect Dev Disabil 48:99–111

    Article  PubMed  Google Scholar 

  • Rahman S, Obaid-ur-Rahman M (2005) Prevalence rate of Down’s syndrome in Karachi resident women. Pak J Pharm Sci 18:61–63

    PubMed  Google Scholar 

  • Selway D, Ashman AF (1998) Disability, religion and health: a literature review in search of the spiritual dimensions of disability. Disabil Soc 13(3):429–439

    Article  Google Scholar 

  • Shiloh S, Berkenstadt M (1992) Lay conceptions of genetic disorders. Birth Defects: Orig Artic Ser 28:191–200

    CAS  Google Scholar 

  • Silverman D (2001) Interpreting qualitative data: methods for analysing talk, text and interaction. London

  • Skinner DG, Correa V, Skinner M, Bailey DB Jr (2001) Role of religion in the lives of Latino families of young children with developmental delays. Am J Ment Retard 106:297–313

    Article  PubMed  CAS  Google Scholar 

  • Van Riper M (2007) Families of children with Down syndrome: responding to “a change in plans” with resilience. J Pediatr Nurs 22:116–128

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

We would like to thank Professor Allan House, Dr Carol Chu and Dr S Yasmeen Shah for supporting this study.

Conflict of interest

None.

Author information

Authors and Affiliations

  1. Leeds Institute of Health Sciences, School of Medicine, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK

    Shenaz Ahmed & Louise D. Bryant

  2. Department of Clinical Genetics, Leeds NHS Teaching Hospitals Trust, Leeds, UK

    Mushtaq Ahmed

  3. Genetech Laboratory, Lahore, Pakistan

    Hussain Jafri & Yasmin Raashid

Authors
  1. Shenaz Ahmed
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Louise D. Bryant
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Mushtaq Ahmed
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Hussain Jafri
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Yasmin Raashid
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Louise D. Bryant.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Ahmed, S., Bryant, L.D., Ahmed, M. et al. Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy. J Community Genet 4, 107–114 (2013). https://doi.org/10.1007/s12687-012-0124-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-012-0124-y

Keywords

Search

Navigation