A qualitative synthesis of adolescents' experiences of living with spina bifida

Qualitative Health Research

Volumn 24, Issue 9, 2014, Pages 1298-1309

  Lindsay, Sally ^a  

^a University of Toronto   (Canada)

Author keywords

adolescents youth; biographical analysis; disability disabled persons; metasynthesis; self care

Indexed keywords

ADOLESCENT; FAMILY RELATION; HUMAN; PEER GROUP; PSYCHOLOGY; QUALITATIVE RESEARCH; SELF CONCEPT; SOCIAL SUPPORT; SPINAL DYSRAPHISM;

ADOLESCENT; FAMILY RELATIONS; HUMANS; PEER GROUP; QUALITATIVE RESEARCH; SELF CONCEPT; SOCIAL SUPPORT; SPINAL DYSRAPHISM;

EID: 84907194851     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732314546558     Document Type: Article

References (59)

1. Antle, B., Montgomery, G., & Stapleford, C. (2009). The many layers of social support: Capturing the voices of young people with spina bifida and their parents. Health and Social Work, 34, 97-106. doi:10.1093/hsw/34.2.97
2. Atkin, K., & Ahmad, W. (2001). Living a 'normal' life: Young people coping with thalassaemia major or sickle cell disorder. Social Science and Medicine, 53, 615-626. doi:10.1016/S0277-9536(00)00364-6
3. Barnes, C., & Mercer, G. (2008). Disability. Cambridge, United Kingdom: Polity Press.
4. Barrera, M. (1986). Distinctions between social support concepts, measures and models. American Journal of Community Psychology, 14, 413-445. doi:10.1007/BF00922627
5. Bellin, M., Sawin, K., Roux, G., Buran, C., & Brei, T. (2007). The experience of adolescent women living with spina bifida part I: Self-concept and family relationships. Rehabilitation Nursing, 32, 57-67. doi:10.1002/j.2048-7940.2007.tb00153.x
6. Blum, R., Resnick, R., Nelson, R., & Germaine, A. (1991). Family and peer issues among adolescents with spina bifida and cerebral palsy. American Academy of Pediatrics, 88, 280-285. Retrieved from http://pedia-trics.aappublications.org/content/88/2/280
7. Bowman, R., McLone, D., Grant, J., Tomita, T., & Ito, J. (2001). Spina bifida outcome: A 25-year prospective. Pediatric Neurosurgery, 34, 114-120. doi:10.1159/000056005
8. Britten, N., Campbell, R., Pope, C., Donovan, J., Morgan, M., & Pill, R. (2002). Using meta ethnography to synthesise qualitative research: A worked example. Journal of Health Services Research & Policy, 7, 209-215. doi:10.1258/135581902320432732
9. Buran, C., Sawin, K., Brei, T., & Fastenau, P. (2004). Adolescents with myelomeningocele: Their activities, beliefs, expectations and perceptions. Developmental Medicine & Child Neurology, 46, 244-252. doi:10.1111/j.1469-8749.2004.tb00479.x
10. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 167-182. doi:10.1111/1467-9566.ep11339939
11. Centers for Disease Control and Prevention. (2009). US children and adolescents with spina bifida. Retrieved from www.cdc.gov/features/dsspinabifidaestimates/index.html
12. Davis, B., Daley, C., Shurtleff, D., Duguay, S., Seidel, K., Loseser, J., & Ellenbogan, R. (2005). Long-term survival of individuals with myelomeningocele. Pediatric Neurosurgery, 41, 186-191. doi:10.1159/000086559
13. Erwin, E., Brotherson, M., & Summers, J. (2011). Understanding qualitative metasynthesis. Journal of Early Intervention, 33, 186-200. doi:10.1177/1053815111425493
14. Fägerskíöld, A., & Mattsson, G. (2010). Disabled children and adolescents may be outsiders in the community. International Nursing Review, 54, 470-477. doi:10.1111/j.1466-7657.2010.00810.x
15. Garibaldi, K., Gibson, R., Reiss, J., Villarreal, G., & Haidet, P. (2004). Transition from pediatric to adult healthcare: The experiences of young adults with spina bifida. Journal of General Internal Medicine, 19, 229. doi:10.1177/1049732308314853
16. Gewurtz, R., Stergiou-Kita, M., Shaw, L., Kirsh, B., & Rappolt, S. (2008). Qualitative meta-synthesis: Reflections on the utility and challenges in occupational therapy. Canadian Journal of Occupational Therapy, 75, 301-308. doi:10.1177/1049732306294089
17. Giarelli, E., Bernhardt, B., Mack, R., & Pyeritz, R. (2008). Adolescents' transition to self-management of a chronic genetic disorder. Qualitative Health Research, 18, 441-457. doi:10.1177/1049732308314853
18. Gibson, B., Mistry, B., Smith, B., Yoshida, K., Abbott, D., Lindsay, S., & Hamdani, Y. (2014). Becoming men: Gender, disability and transitioning to adulthood. Health, 18, 93-112. doi:10.1177/1363459313476967
19. Goffman, E. (1963). Stigma: Notes on management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall.
20. Greenley, R., Coakley, R., Holmbeck, G., Jandasek, B., & Wills, K. (2006). Condition-related knowledge among children with spina bifida: Longitudinal changes and predictors. Journal of Pediatric Psychology, 31, 828-839. doi:10.1093/jpepsy/jsj097
21. Grypdonck, M. (2006). Qualitative health research in the era of evidence-based practice. Qualitative Health Research, 16, 1371-1385. doi:10.1177/1049732306294089
22. Helgeson, V., & Novak, S. (2007). Illness centrality and well-being among male and female adolescents with diabetes. Journal of Pediatric Psychology, 32, 260-272. doi:10.1093/jpepsy/jsl018
23. Ho, J., Stevenson, E., Nehring, W., Alpeter, A., & Grant, J. (1997). A qualitative examination of adolescents and adults with myelomeningocele their perspective. European Journal of Pediatric Surgery, 7, 53-54.
24. Johnson, S. (1988). Psychological aspects of childhood diabetes. Journal of Child Psychology 29, 729-738. doi:10.1111/j.1469-7610.1988.tb00749.x
25. Karlsson, A. (2008). In teenagers with diabetes, transition toward autonomy in self-management involved in growth in self-reliance and support from others. Evidence Based Nursing, 11, 125. doi:10.1136/ebn.11.4.125
26. Kelly, L., Zebracki, K., Holmbeck, G., & Gershenson, L. (2008). Adolescent development and family functioning in youth with spina bifida. Journal of Pediatric Rehabilitative Medicine, 1, 291-302. Retrieved from http://iospress.meta-press.com/content/1523m6xh616h1083
27. Kinavey, C. (2006). Explanatory models of self-understanding in adolescents born with spina bifida. Qualitative Health Research, 16, 1091-1107. doi:10.1177/1049732306292092
28. Kinavey, C. (2007). Adolescents born with spina bifida: Experiential worlds and biopsychosocial developmental challenges. Issues in Comprehensive Pediatric Nursing, 30, 147-164. doi:10.1080/01460860701728352
29. Knafl, K., & Deatrick, J. (1986). How families manage chronic conditions: An analysis of the concept of normalization. Research in Nursing and Health, 9, 215-222. doi:10.1002/nur.4770090306
30. Kramer, J., Olsen, S., Mermelstein, M., Balcells, A., & Liljenquist, K. (2012). Youth with disabilities' perspectives of the environment and participation: A qualitative meta-synthesis. Child, Care, Health & Development, 38(6), 763-777. doi:10.1111/j.1365-2214.2012.01365.x
31. Lemanek, K. (1990). Adherence issues in the medical management of asthma. Journal of Pediatric Psychology, 15, 437-458. doi:10.1093/jpepsy/15.4.437
32. Lindsay, S. (2009). Prioritizing illness: Self-managing multiple chronic diseases. Canadian Journal of Sociology, 34, 983-1002.
33. Lindsay, S., & Edwards, A. (2013). A systematic review of disability awareness interventions for school-aged children. Disability and Rehabilitation, 35, 623-646. doi:10.3109/09638288.2012.702850.
34. Lindsay, S., Kingsnorth, S., & Hamdani, Y. (2011). Barriers and facilitators of chronic illness self-management among adolescents: A review and future directions. Journal of Nursing and Healthcare of Chronic Illness, 3, 186-208. doi:10.1111/j.1752-9824.2011.01090.x
35. Lindsay, S., Kingsnorth, S., Mcdougall, C., & Keating, H. (2014). A systematic review of self-management interventions for children and youth with physical disabilities. Disability & Rehabilitation, 36(4), 276-288. doi:10.3109/09638288.2013.785605
36. Major, C., & Savin-Baden, M. (2010). An introduction to qualitative research synthesis: Managing the information explosion in social science research. New York: Routledge.
37. Mayall, B. (2004). Sociologies of childhood. In M. Holborn (Ed.), Developments in sociology: An annual review (vol. 20, pp. 37-57). Lancashire, United Kingdom: Causeway Press.
38. Noblit, G., & Hare, R. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury Park, CA: Sage.
39. Nyman, S., Dibb, B., Victor, C., & Gosney, M. (2012). Emotional well-being and adjustment to vision loss in later life: A meta-synthesis of qualitative studies. Disability & Rehabilitation, 34(12), 971-981. doi:10.3109/09638288.2011.626487
40. Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., & Campbell, R. (2005). Resisting medicines: A synthesis of qualitative studies of medicine taking. Social Science & Medicine, 61, 133-155. doi:10.1016/j.socscimed.2004.11.063
41. QSR International. (2013). NVivo (Version 10) [Computer software]. Retrieved from www.qsrinternational.com/products-nvivo.aspx
42. Quinn, K., Murray, C., & Malone, C. (2014). Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: A meta-synthesis of qualitative research. Disability & Rehabilitation, 36(3), 185-198., doi:10.3109/09638288.2013.783630
43. Ridosh, M., Braun, P., Bellin, M., & Sawin, K. (2011). Transition in young adults with spina bifida: A qualitative study. Child: Care, Health, and Development, 37, 866-874. doi:10.1111/j.1365-2214.2011.01329.x
44. Roux, G., Dinley, C., & Bush, H. (2002) Inner strength in women: Metasynthesis of qualitative findings in theory development. Journal of Theory Construction & Testing, 6(1), 4-15.
45. Roux, G., Sawin, K., Bellin, M., Buran, C., & Brei, T. (2007). The experience of adolescent women living with spina bifida part II: Peer relationships. Rehabilitation Nursing, 32, 112-119. doi:10.1002/j.2048-7940.2007.tb00162.x
46. Saini, M., & Shlonsky, A. (2012). Systematic synthesis of qualitative research. Oxford, United Kingdom: University of Oxford Press.
47. Sandelowski, M., & Barroso, J. (2007). Handbook for synthesizing qualitative research. New York: Springer. doi:10.1177/1053815111425493
48. Sandelowski, M., Docherty, S., & Emden, C. (1997). Qualitative metasynthesis: Issues and techniques. Research in Nursing and Health, 20, 365-371. doi:10.1002/(SI-CI)1098-240X(199708)20:4〈365::AID-UR9〉3.0.CO;2-E
49. Sandler, A. (2004). Living with spina bifida. Chapel Hill, NC: North Carolina Press.
50. Sawin, K., Bellin, M., & Roux, G. (2009). The experience of self-management in adolescent women with spina bifida. Rehabilitation Nursing, 34, 26-38. doi:10.1002/j.2048-7940.2009.tb00245.x
51. Simeonsson, R., Huntington, G., McMillen, J., Halperin, D., & Swann, D. (1997). Developmental factors, health and psychosocial adjustment of children and youths with spina bifida. In Proceedings from International Symposium on Spina Bifida II (pp. 544-541). Kobe, Japan.
52. Skar, L. (2003). Peer and adult relationships with adolescents with disabilities. Journal of Adolescence, 26, 635-649.
53. Soares, A., Moreira, M., & Monteiro, L. (2008). The quality of life of Brazilian and North-American adolescents with spina bifida. Cincia & Saude Coletiva, 13(S2), 2215-2223.
54. Storch, E., Heidgerken, A., Geffken, G., Lewin, A., Ohleyer, V., Freddo, M., & Silverstein, J. (2006). Bullying, regimen self-management, and metabolic control in youth with type I diabetes. Journal of Pediatrics, 148, 784-787. doi:10.1016/j.jpeds.2006.01.007
55. Tong, A., Jones, C., & Singh-Grewal, D. (2012). Children's experiences of living with juvenile idiopathic arthritis: Thematic synthesis of qualitative studies. Arthritis Care and Research, 64(9), 1392-1404. doi:10.1002/acr.21695
56. Tong, A., Morton, R., Howard, K., & Craig, J. (2009). Adolescent experiences following organ transplantation: A systematic review of qualitative studies. Journal of Pediatrics, 155, 542-549. doi:10.1016/j.jpeds.2009.04.009
57. Wiener, C., & Kayser-Jones, T. (1990). The uneasy fate of nursing home residents: An organizational interaction perspective. Sociology of Health and Illness, 12, 84-104. doi:10.1111/1467-9566.ep10844893
58. Williams, B., Corlett, J., Dowell, J., Coyle, J., & Mukhopadhyay. (2009). I've never not had it so I don't really know what it's like not to: Nondifference and biographical disruption among children and young people with cystic fibrosis. Qualitative Health Research, 19, 1443-1455. doi:10.1177/1049732309348363
59. Wollenhaupt, J., Rodgers, B., & Sawin, K. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18, 65-90. doi:10.1177/1074840711427545