Between 'desperation' and disability rights: A narrative analysis of complementary/alternative medicine use by parents for children with Down syndrome

Social Science and Medicine

Volumn 60, Issue 3, 2005, Pages 587-598

  Prussing, Erica ^a   Sobo, Elisa J ^b   Walker, Elizabeth ^c   Kurtin, Paul S ^c  

^a UNIVERSITY OF IOWA   (United States)

^b Children's Hospital and Health Centers   (United States)

^c RADY CHILDREN'S HOSPITAL   (United States)

Author keywords

Complementary alternative medicine; Consumerism; Disability studies; Down syndrome; Narrative analysis; USA

Indexed keywords

CHILD HEALTH;

ALTERNATIVE MEDICINE; ARTICLE; DISABILITY; DOWN SYNDROME; HUMAN; HUMAN RIGHTS; PARENT; VERBAL COMMUNICATION;

ANXIETY; CHILD; COMPLEMENTARY THERAPIES; DISABLED CHILDREN; DOWN SYNDROME; HUMANS; NARRATION; PARENTS; PATIENT RIGHTS;

EID: 8644259053     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2004.05.020     Document Type: Article

References (66)

1. Adler S.R. Complementary and alternative medicine use among women with breast cancer. Medical Anthropology Quarterly. 13:1999;214-222
2. Alderson P. Down's syndrome. Cost, quality and value of life Social Science and Medicine. 53:2001;627-638
3. American Academy of Pediatrics, Committee on Genetics (2001). Health Supervision for Children With Down Syndrome. Pediatrics, 107, 442-449.
4. Ani C., Grantham-McGregor S., Muller D. Nutritional supplementation in Down syndrome. Theoretical considerations and current status Developmental Medicine and Child Neurology. 42:2000;207-213
5. Astin J.A. Why patients use alternative medicine. Results of a national study Journal of the American Medical Association. 279:1998;1548-1553
6. Baer H.A. Biomedicine and alternative healing systems in America. Issues of class, race, ethnicity, and gender:2001;University of Wisconsin Press, Madison
7. Becker G. Disrupted lives. How people create meaning in a chaotic world:1997;University of California Press, Berkeley
8. Beyerstein B.L. Alternative medicine and common errors of reasoning. Academic Medicine. 76:2001;230-237
9. Bishop J., Huether C.A., Torfs C., Lorey F., Deddens J. Epidemiologic study of Down syndrome in a racially diverse California population, 1989-1991. American Journal of Epidemiology. 145:1997;134-147
10. Bryant L.D., Murray J., Green J.M., Hewison J., Sehmi I., Ellis A. Descriptive information about Down syndrome. A content analysis of serum screening leaflets Prenatal Diagnosis. 21:2001;1057-1063
11. Chan E., Rappaport L.A., Kemper K.J. Complementary and alternative therapies in childhood attention and hyperactivity problems. Journal of Developmental and Behavioral Pediatrics. 24:2003;4-8
12. Chesler M.A. Mobilizing consumer activism in health care. The role of self-help groups Research in Social Movements. Conflicts and Change. 13:1991;275-305
13. Coleman M. Vitamins and Down syndrome. Down Syndrome Quarterly. 2:1997;11-13
14. Crane D. The sanctity of social life. physicians' treatment of critically ill patients:1975;Russell Sage, New York
15. Ernst E. Science friction. Complementary/alternative medicine on the stony road from opinion to evidence International Journal of Epidemiology. 30:2001;526-531
16. Frank A. The wounded storyteller. Body, illness, and ethics: 1995;University of Chicago Press, Chicago
17. Furnham A., Vincent C. Reasons for using CAM. Kelner M., Wellman B., Pescosolido B., Saks M. Complementary and alternative medicine: Challenge and change. 2000;61-78 Harwood Academic Publishers, Amsterdam
18. Good B.J., Del Vecchio Good M.J. In the subjunctive mode. Epilepsy narratives in Turkey Social Science and Medicine. 38:1994;835-842
19. Gray D.E. Accommodation, resistance and transcendence. Three narratives of autism Social Science and Medicine. 53:2001;1247-1257
20. Green G., Sobo E.J. The endangered self. Managing the social risks of HIV:2000;Routledge, London
21. Grove, K.A., Fisher, D. (1999). Entrepreneurs of Meaning: Parents and the process of inclusive education. Remedial and Special Education, 20, 208-215, 256.
22. Heuschkel R., Afzal N., Wuerth A., Zurakowski D., Leichtner A., Kemper K., Tolia V., Bousvaros A. Complementary medicine use in children and young adults with inflammatory bowel disease. American Journal of Gastroenterology. 97:2002;382-388
23. Hyman S.L., Levy S.E. Autistic spectrum disorders. When traditional medicine is not enough Contemporary Pediatrics. 17:2000;101-116
24. Kaptchuk T.J., Eisenberg D.M. The persuasive appeal of alternative medicine. Annals of Internal Medicine. 129:1998;1061-1065
25. Kasnitz D., Shuttleworth R.P. Anthropology and disability studies. Rogers L.J., Swadener B.B. Semiotics and dis/ability: Interrogating categories of difference. 2001;19-41 State University of New York Press, Albany
26. Kelner, M., Wellman, B, Pescoscolido, B., & Saks, M. (Eds.) (2000). Complementary and alternative medicine: Challenge and change. Amsterdam: Harwood Academic Publishers.
27. Kemper K.J. Separation or synthesis. A holistic approach to therapeutics Pediatric Review. 17:1996;279-283
28. Kemper K.J. Complementary and alternative medicine for children. Does it work? Archives of Disease in Childhood. 84:2001;6-9
29. Kleinman A. The illness narratives. suffering, healing and the human condition:1988;Basic Books, New York
30. Kramer L.S. Uncommon voyage. Parenting a special needs child in the world of alternative medicine:1996;Faber & Faber, Boston
31. Krauss H.H., Godfrey C., Kirk J., Eisenberg D.M. Alternative health care. Its use by individuals with physical disabilities Archives of Physical Medicine and Rehabilitation. 79:1998;1440-1447
32. Kupperman M., Nease R.F., Lee A., Learman E.G., Blumberg B., Washington A.E. Procedure-related miscarriages and Down syndrome-affected births. Implications for prenatal testing based on women's preferences Obstetrics and Gynecology. 96:2000;511-516
33. Landsman G.H. Reconstructing motherhood in the age of "perfect" babies. Mothers of infants and toddlers with disabilities Signs. 24:1998;69-99
34. Landsman G.H. Does God give special kids to special parents? Personhood and the child with disabilities as gift and gift giver. Layne L.L. Transformative motherhood: On giving and getting in a consumer culture. 1999;133-165 New York University Press, New York
35. Landsman G.H. Real motherhood, class, and children with disabilities. Ragoné H., Twine F.W. Ideologies and technologies of motherhood. Race, class, sexuality, nationalism:2000;169-187 Routledge, New York
36. Landsman G.H. Emplotting children's lives. Developmental delay vs. disability Social Science and Medicine. 56:2003;1947-1960
37. Larson E. Reframing the meaning of disability to families. The embrace of paradox Social Science and Medicine. 47:1998;865-875
38. Leiter V. Dilemmas in sharing care. Maternal provision of professionally driven therapy for children with disabilities Social Science and Medicine. 58:2003;837-849
39. Lobaugh N., Karaskov V., Rombough V., Rovet J., Bryson S., Greenbaum R., Haslam R.H., Koren G. Piracetam therapy does not enhance cognitive functioning in children with Down syndrome. Archives of Pediatrics and Adolescent Medicine. 155:2001;442-448
40. Lupton D. Consumerism, reflexivity and the medical encounter. Social Science and Medicine. 45:1997;373-381
41. Mattingly, C., & Garro, L.C. (Eds.) (2000). Narrative and the cultural construction of illness and healing. Berkeley: University of California Press.
42. Mattheis P. Alternative therapies. From a parent's perspective Hassold T., Patterson D. Down syndrome. A promising future, together:1999;93-100 Wiley-Liss, New York
43. Neuhouser M.L., Patterson R.E., Schwartz S.M., Hedderson M.M., Bowen D.J., Standish L.J. Use of alternative medicine by children with cancer in Washington state. Preventive Medicine. 33:2001;347-354
44. Nickel R.E. Controversial therapies for young children with developmental disabilities. Infants and Young Children. 8:1996;29-40
45. O'Connor B.B. Healing traditions. Alternative medicine and the health professions:1995;University of Pennsylvania Press, Philadelphia
46. O'Connor B.B. Personal experience, popular epistemology, and complementary and alternative medicine research. Callahan D. The role of complementary and alternative medicine: Accommodating pluralism. 2002;54-73 Georgetown University Press, Washington, DC
47. Petchey R., Farnsworth B., Williams J. The last resort would be to go to the GP. Understanding the perceptions and use of general practitioner services among people with HIV/AIDS. Social Science and Medicine. 50:2000;233-245
48. Press N., Browner C.H., Tran D., Morton C., LeMaster B. Provisional normalcy and "perfect babies" Pregnant women's attitudes towards disability in the context of prenatal testing Franklin S., Ragoné H. Reproducing reproduction: Kinship, power and technological innovation. 1998;46-65 University of Pennsylvania Press, Philadelphia
49. Quine L., Rutter D.R. First diagnosis of severe mental and physical disability. A study of doctor-parent communication Journal of Child Psychology and Psychiatry. 35:1994;1273-1287
50. Rapp R. Testing women, testing the fetus. The social impact of amniocentesis in America:1999;Routledge, New York
51. Rapp R., Ginsburg F. Enabling disability. Rewriting kinship, reimagining citizenship Public Culture. 13:2001;533-556
52. Silverman D. Communication and medical practice. Social relations in the clinic:1987;SAGE Publications, London
53. Skinner D., Bailey D.B., Correa V., Rodriguez P. Narrating self and disability. Latino mothers' constructions of identities vis-á-vis their child with special needs Exceptional Children. 65:1999;481-495
54. Sobo E.J. Rationalization of medical risk through talk of trust. An exploration of elective eye surgery narratives Anthropology and Medicine. 8:2001;265-278
55. Spigelblatt L. Alternative medicine. Should it be used by children? Current Problems in Pediatrics. 25:1995;180-188
56. Spigelblatt L., Laine-Ammara G., Pless I.B., Guyver A. The use of alternative medicine by children. Pediatrics. 94:1994;811-814
57. Stockall N. A mother's reconstruction of the semiotic self. In Semiotics and dis/ability. Interrogating categories of difference Rogers L.J., Swadener B.B. Semiotics and dis/ability: Interrogating categories of difference. 2001;117-134 State University of New York Press, Albany
58. Strauss A., Corbin J. Basics of qualitative resarch. techniques and procedures for developing grounded theory 2nd ed.:1998;Sage Publications, Thousand Oaks, CA
59. Takashima S. Down syndrome. Current Opinion in Neurology. 10:1997;148-152
60. Thomas-MacLean R. Understanding breast cancer stories via Frank's narrative types. Social Science and Medicine. 58:2004;1647-1657
61. Van Dyke D.C., Lang D., Van Duyne S., Heide F., Chang H. Cell therapy in children with Down syndrome. A retrospective study Pediatrics. 85:1990;79-84
62. Van Dyke D.C., Mattheis P. Alternative and unconventional therapies in Down syndrome. Hassold T., Patterson D. Down syndrome: A promising future, together. 1999;101-112 Wiley-Liss, New York
63. Van Riper M. Maternal perceptions of family provider relationships and well-being in families of children with Down syndrome. Research in Nursing and Health. 22:1999;357-368
64. Williams B. Patient satisfaction. A valid concept? Social Science and Medicine. 38:1994;509-516
65. Wilson K.M., Klein J.D. Adolescents' use of complementary and alternative medicine. Ambulatory Pediatrics. 22:2002;104-110
66. winMAX software for qualitative data analysis (1997). Berlin: Scolari/Sage Publications, Inc.