Enabling the Authentic Voice: Generating Ethnographies of Women with Cerebral Palsy
References
- Agula, Justina, Jennifer Barrett, and Hilde Tobi. 2015. “The other side of rapport: data collection mode and interviewer gender effects on sexual health reporting in Ghana.” African Journal of Reproductive Health 19(3): 111–117.
- Aluwihare-Samaranayake, Dilmi. 2012. “Ethics In Qualitative Research: A View of The Participants’ And Researchers’ World From A Critical Standpoint.” International Journal Of Qualitative Methods 11(2): 64–81. DOI: 10.1177/160940691201100208
- Ashby, Christine. 2011. “Whose ‘Voice’ is it Anyway?: Giving Voice and Qualitative Research Involving Individuals that Type to Communicate.” Disability Studies Quarterly 31(4). DOI: 10.18061/dsq.v31i4.1723
- Cook, Catherine. 2012. “Email interviewing: generating data with a vulnerable population.” Journal of Advanced Nursing 68(6): 1330–1339. DOI: 10.1111/j.1365-2648.2011.05843.x
- Cremer, Nicole, Edward Hurvitz, and Mark Peterson. 2017. “Multimorbidity in middle-aged adults with cerebral palsy.” American Journal of Medicine 130(6): 744–69. DOI: 10.1016/j.amjmed.2016.11.044
- Dobransky, Kerry, and Eszter Hargittai. 2016. “Unrealized potential: Exploring the digital disability divide.” Poetics 58: 18–28. DOI: 10.1016/j.poetic.2016.08.003
- Equality Act 2010 (UK).
https://www.legislation.gov.uk/ukpga/2010/15/contents . - Farmer, Martin, and Fraser Macleod. 2011. “Involving disabled people in social research: Guidance by the Office for Disability Issues.” Office for Disability Issues HM Government.
- Flynn, Nancy. 2004. Instant messaging rules: A business guide to managing policies, security, and legal issues for safe IM communication. New York: Amacom Books.
- Gajjala, Radhika. 2002. “An interrupted postcolonial/feminist cyberethnography: Complicity and resistance in the ‘cyberfield’.” 177–193. DOI: 10.1080/14680770220150854
- Garland-Thomson, Rosemarie. 2002. “Integrating disability, transforming feminist theory.” NWSA Journal 14(3): 1–32. DOI: 10.2979/NWS.2002.14.3.1
- Garland-Thomson, Rosemarie. 2005. “Feminist disability studies.” Signs: Journal of Women in Culture and Society 30(2): 1557–1587. DOI: 10.1086/423352
- Gannotti, Mary, and David Frumberg. 2020. “Clinical Therapy Services for Adults with Cerebral Palsy: Optimizing Health and Well Being Across the Lifespan.” Cerebral Palsy, 2519–2541. DOI: 10.1007/978-3-319-74558-9_158
- Harniss, Mark, Dagmar Amtmann, Debbie Cook, and Kurt Johnson. 2007. “Considerations for developing interfaces for collecting patient-reported outcomes that allow the inclusion of individuals with disabilities.” Medical Care 45(5 suppl 1): S48–S54. DOI: 10.1097/01.mlr.0000250822.41093.ca
- Hinchcliffe, Vanessa, and Helen Gavin. 2008. “Internet mediated research: A critical reflection upon the practice of using instant messenger for higher educational research interviewing.” Psychology and Society 1(1): 91–104.
- Hocaloski, Shea, Stacy Elliott, Lori A. Brotto, Erin Breckon, and Kate McBride. 2016. “A mindfulness psychoeducational group intervention targeting sexual adjustment for women with multiple sclerosis and spinal cord injury: a pilot study.” Sexuality and Disability 34(2): 183–198. DOI: 10.1007/s11195-016-9426-z
- Ison, Nicole. 2009. “Having their say: email interviews for research data collection with people who have verbal communication impairment.” International Journal of Social Research Methodology 12(2): 161–172. DOI: 10.1080/13645570902752365
- James, Nalita. 2016. “Using email interviews in qualitative educational research: Creating space to think and time to talk.” International Journal of Qualitative Studies in Education 29(2): 150–163. DOI: 10.1080/09518398.2015.1017848
- Kerschbaum, Stephanie L., and Margaret Price. 2017. “Centering disability in qualitative interviewing.” Research in the Teaching of English 52(1): 98.
- Law, John, Evelyn Ruppert, and Mike Savage. 2011.
“The double social life of methods.” CRESC. - Linton, Simi. 2007.
“My Body Politic: A Memoir” . Ann Arbor: University of Michigan Press. - Lune, Howard, and Bruce Berg. 2017.
“Qualitative Research Methods for the Social Sciences” . 10th ed. New York: Pearson. - MacKeigan, Tanya. 2020. “Sexual citizenship through resistance: a movement that centers disabled women’s voices.” Disability & Society 36(3): 1–22. DOI: 10.1080/09687599.2020.1751077
- Malacrida, Claudia. 2007. “Reflexive journaling on emotional research topics: Ethical issues for team researchers.” Qualitative Health Research 17(10): 1329–1339. DOI: 10.1177/1049732307308948
- Narayan, Kirin. 1997. “How Native Is a―Native‖ Anthropologist?” In Situated Lives: Gender and Culture in Everyday Life. Louise Lamphere, et al. (eds.).
- Paterson, Kevin. 2012.
“It’s about time!: Understanding the experience of speech impairment.” In Routledge Handbook of Disability Studies, edited by Nick Watson, Alan Roustone and Carol Thomas, 206–218. London: Routledge, 2012. - Pearce, Gemma, Cecilie Thøgersen-Ntoumani, and Joan L. Duda. 2014. “The development of synchronous text-based instant messaging as an online interviewing tool.” International Journal of Social Research Methodology 17(6): 677–692. DOI: 10.1080/13645579.2013.827819
- Plummer, Ken. 2016.
“Critical humanist notes for a narrative wisdom” . In Documents of life revisited: Narrative and biographical methodology for a 21st century critical humanism, edited by Liz Stanley. Farnham: Routledge. - Poulos, Ann, Susan Balandin, Gwynnyth Llewellyn, and Angela Dew. 2006. “Women with cerebral palsy and breast cancer screening by mammography.” Archives of physical medicine and rehabilitation 87(2): 304–307. DOI: 10.1016/j.apmr.2005.09.020
- Råheim, Målfrid, Liv Heide Magnussen, Ragnhild Johanne Tveit Sekse, Åshild Lunde, Torild Jacobsen, and Astrid Blystad. 2016. “Researcher–researched relationship in qualitative research: Shifts in positions and researcher vulnerability.” International Journal of Qualitative Studies on Health and Well-Being 11(1): 30996. DOI: 10.3402/qhw.v11.30996
- Rios, Dianne, Susan Magasi, Catherine Novak, and Mark Harniss. 2016. “Conducting accessible research: including people with disabilities in public health, epidemiological, and outcomes studies.” American Journal of Public Health 106(12): 2137–2144. DOI: 10.2105/AJPH.2016.303448
- Samuels, Ellen. 2002. “Critical divides: Judith Butler’s body theory and the question of disability.” NWSA Journal. 58–76. DOI: 10.2979/NWS.2002.14.3.58
- Shah, Sonali. 2006. “Sharing the world: the researcher and the researched.” Qualitative research 6(2): 207–220. DOI: 10.1177/1468794106062710
- Shah, Sonali, C. Bradbury-Jones, and Julie Taylor. 2020. “Using Facebook to tell stories of premature ageing and sexual and reproductive healthcare across the life course for women with cerebral palsy in the UK and USA.” BMJ open 10(2). DOI: 10.1136/bmjopen-2019-032172
- Shah, Sonali, Julie Taylor, and Caroline Bradbury-Jones. 2021. “Barriers and enablers to participating in regular screening programmes for women with cerebral palsy: A qualitative life course study.” Journal of Advanced Nursing 78(3): 823–833. DOI: 10.1111/jan.15058
- Shaunak, Meera, and Veronica Kelly. 2018. “Cerebral palsy in under 25s: Assessment and management (NICE Guideline NG62).” Archives of Disease in Childhood-Education and Practice 103(4): 189–193. DOI: 10.1136/archdischild-2017-312970
- Shpigelman, Carmit-Noa, and Carol Gill. 2014. “Facebook use by persons with disabilities.” Journal of Computer-Mediated Communication 19(3): 610–624. DOI: 10.1111/jcc4.12059
- Siddiqi, Siraj, Don Van Dyke, Patricia Donohoue, and Dianne McBrien. 1999. “Premature sexual development in individuals with neurodevelopmental disabilities.” Developmental Medicine & Child Neurology 41(6): 392–395. DOI: 10.1017/S0012162299000857
- Stanley, Liz, and Sue Wise. 2002. Breaking out again: Feminist ontology and epistemology. London: Routledge. DOI: 10.4324/9780203201619
- Steel, Jennifer, David Geller, and Brian Carr. 2005. “Proxy ratings of health-related quality of life in patients with hepatocellular carcinoma.” Quality of Life Research 14(4): 1025–1033. DOI: 10.1007/s11136-004-3267-4
- Thomas, Carol. 1999. Female forms: Experiencing and understanding disability. Buckingham: Open University Press.
- Thomas, Carol. 2001. Medicine, gender and disability: Disabled women’s health care encounters. Health Care for Women International 22(3): 245–262. DOI: 10.1080/073993301300357188
- Thomas, Carol. 2006. “Disability and Gender: Reflections on Theory and Research.” Scandinavian Journal of Disability Research 8(2–3): 177–185. DOI: 10.1080/15017410600731368
- Turk, Margaret A., Joanne Scandale, Paula Rosenbaum, and Robert Weber. 2001. “The health of women with cerebral palsy.” Physical Medicine and Rehabilitation Clinics of North America 12(1): 153–168. DOI: 10.1016/S1047-9651(18)30088-3
- Unluer, Sema. 2012. “Being an insider researcher while conducting case study research.” Qualitative Report 17: 58.
- Williams, Ann, and Shirley Moore. 2011. “Universal design of research: Inclusion of persons with disabilities in mainstream biomedical studies.” Science Translational Medicine 3(82): 82–100. DOI: 10.1126/scitranslmed.3002133
- World Health Organization. 2011.
“World Report on Disability.” Geneva: WHO.https://www.who.int/disabilities/world_report/2011/report.pdf . - Worley, Gordon, Christine Houlihan, Marcia Herman-Giddens, Maureen O’Donnell, Mark Conaway, Virginia Stallings, W. Cameron Chumlea, et al. 2002. “Secondary sexual characteristics in children with cerebral palsy and moderate to severe motor impairment: A cross-sectional survey.” Pediatrics 110(5): 897–902. DOI: 10.1542/peds.110.5.897
- Zacharin, Margaret, Ingrid Savasi, and Sonia Grover. 2010. “The impact of menstruation in adolescents with disabilities related to cerebral palsy.” Archives of Disease in Childhood 95(7): 526–530. DOI: 10.1136/adc.2009.174680
DOI: https://doi.org/10.16993/sjdr.833 | Journal eISSN: 1745-3011
Language: English
Page range: 82 - 95
Submitted on: May 4, 2021
Accepted on: Jan 14, 2022
Published on: Mar 11, 2022
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2022 Sonali Shah, Caroline Bradbury-Jones, Julie Taylor, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.