References
- Aadlandsvik, R. Undated. “Conversations with Ivor Goodson over the Last Two Decades.” Taped and Transcribed. Unpublished.
- Allen, J., J. Oybode, and J. Allen. 2009. “Having a Father with Young Onset Dementia: The Impact on the Well Being of Young People.” Dementia (Basel, Switzerland) 8 (4): 455–480.
- Aslett, H., J. Huws, R. Woods, and J. Kelly-Rhind. 2017. “‘This is Killing Me Inside’: The Impact of Having a Parent with Young-Onset Dementia.” Dementia. Advance online publication. doi:10.1177/1471301217702977.
- Behar, R. 1996. The Vulnerable Observer: Anthropology That Breaks Your Heart. Boston: Beacon Press.
- Blee, K. 2003. “Studying the Enemy.” In Our Studies, Ourselves: Sociologists’ Lives and Work, edited by B. Glassner and R. Hertz, 13–23. New York: Oxford University Press.
- Bloor, M., B. Fincham, and H. Sampson. 2007. Qualiti (NCRM) Commissioned Inquiry into the Risk to Well-Being of Researchers in Qualitative Research. Cardiff, UK: School of Social Sciences. Accessed 15/10/18. http://eprints.ncrm.ac.uk/407/1/CIReport.pdf.
- British Educational Research Association [BERA]. 2018. Ethical Guidelines for Educational Research. 4th ed. London. https://www.bera.ac.uk/researchers-resources/publications/ethical-guidelines-for-educational-research-2018.
- Brooks, R., K. te Riele, and M. Maguire. 2014. Ethics and Education Research. London: Sage.
- Chatham-Carpenter, A. 2018. “‘Do Thyself No Harm’: Protecting Ourselves as Autoethnographers.” Journal of Research Practice 6 (1), Article M1. Accessed 8/10/18. http://jrp.icaap.org/index.php/jrp/article/view/213/183.
- Dickson-Swift, V., E. James, S. Kippen, and P. Liamputtong. 2007. “Doing Sensitive Research: What Challenges do Qualitative Researchers Face?” Qualitative Research 7 (3): 327–353. doi: 10.1177/1468794107078515
- Dickson-Swift, V., E. James, S. Kippen, and P. Liamputtong. 2008. “Risk to Researchers in Qualitative Research on Sensitive Topics: Issues and Strategies.” Qualitative Health Research 18 (1): 133–144. doi: 10.1177/1049732307309007
- Dickson-Swift, V., E. James, S. Kippen, and P. Liamputtong. 2009. “Researching Sensitive Topics: Qualitative Work as Emotion Work.” Qualitative Research 9 (1): 61–79. doi: 10.1177/1468794108098031
- Ellis, C. 2007. “Telling Secrets, Revealing Lives: Relational Ethics in Research with Intimate Others.” Qualitative Inquiry 13 (1): 3–29. doi: 10.1177/1077800406294947
- Ellis, C. 2017. “Compassionate Research: Interviewing and Storytelling from a Relational Ethics of Care.” In The Routledge International Handbook on Narrative and Life History, edited by I. Goodson, et al., 431–445. London: Routledge.
- Ellis, C. 2018. Final Negotiations: A Story of Love, Loss and Chronic Illness. Revised and expanded ed. Philadelphia: Temple University Press.
- Ellis, C., and A. Bochner. 2005. “Autoethnography, Personal Narrative, Reflexivity: Researcher as Subject.” In Handbook of Qualitative Research. 2nd ed., edited by Norman Denzin and Yvonna Lincoln, 733–768. Thousand Oaks: Sage.
- emerald, e., and L. Carpenter. 2015. “Vulnerability and Emotions in Research: Risks, Dilemmas and Doubts.” Qualitative Inquiry 21 (8): 741–750. doi: 10.1177/1077800414566688
- Gelman, C., and K. Rhames. 2016. “In Their Own Words: The Experiences and Needs of Children in Younger-Onset Alzheimer’s Disease and Other Dementias Families.” Dementia. Advance online publication. doi: 1471301216647097.
- Goodson, I., A. Antikainen, P. Sikes, and M. Andrews. 2017. The Routledge International Handbook on Narrative and Life History. London: Routledge.
- Goodson, I., and P. Sikes. 2001. Life History Research in Educational Settings. Maidenhead: Open University.
- Gullion, J. 2018. Diffractive Ethnography: Social Science and the Ontological Turn. New York: Routledge.
- Hall, M., and P. Sikes. 2016a. “How Do Young People ‘Do’ Family When There is a Diagnosis of Dementia?” Families, Relationships and Societies. Advance online publication. doi:10.1332/204674316X14818999694306.
- Hall, M., and P. Sikes. 2016b. “‘I’m not a carer’: the identities of children and young people who have a parent with dementia.” Unpublished paper.
- Hall, M., and P. Sikes. 2016c. “From ‘What the Hell is Going On?’ To the ‘Mushy Middle Ground’ to ‘Getting Used to a New Normal’: Young People’s Narratives Around Navigating Parental Dementia.” Illness, Crisis and Loss. Advance online publication. doi:10.1177/1054137316651384 (gold access). http://icl.sagepub.com/content/early/2016/05/26/1054137316651384.full.pdf+html
- Hall, M., and P. Sikes. 2017. “‘It’d be Easier if She’d Died’: Young People with Parents with Dementia Articulating Inadmissible Stories.” Qualitative Health Research. Advance online publication. doi:10.1177/1049732317697079.
- Harris, M. 2015. “‘Three in the Room’: Embodiment, Disclosure and Vulnerability in Qualitative Research.” Qualitative Health Research 25 (12): 1689–1699. doi: 10.1177/1049732314566324
- Hutchinson, K., C. Roberts, S. Kurrle, and M. Daly. 2014. “The Emotional Well Being of Young People Having a Parent with Younger Onset Dementia.” Dementia (Basel, Switzerland). Advance online publication. doi:10.1177/1471301214532111.
- Iphofen, R., and M. Tolich. 2018. The Sage Handbook of Qualitative Research Ethics. London: Sage.
- Jackson, A., and L. Mazzei. 2009. Voice in Qualitative Inquiry: Challenging Conventional, Interpretative and Critical Conceptions in Qualitative Research. New York: Routledge.
- James, A. 2005. “Life Times: Childreńs Perspectives on Age, Agency and Memory Across the Life Course.” In Studies in Modern Childhood: Society, Agency and Culture, edited by Jens Qvortrup, 248–266. London: Palgrave.
- Kiyimba, N., and M. O’Reilly. 2016. “The Risk of Secondary Traumatic Stress in the Qualitative Transcription Process: A Research Note.” Qualitative Inquiry 16 (4): 468–476.
- Lather, P. 2009. “‘Against Empathy, Voice and Authenticity’.” In Voice in Qualitative Inquiry: Challenging Conventional, Interpretative and Critical Conceptions in Qualitative Research, edited by A. Jackson and L. Mazzei, 17–26. New York: Routledge.
- Lee, R. 1993. Doing Research on Sensitive Topics. London: Sage.
- Liddiard, K. 2013. “Reflections on the Process of Researching Disabled People’s Sexual Lives.” Sociological Research Online 18 (3): 10. Accessed 8/10/18. http://www.socresonline.org.uk/18/3/10html. doi: 10.5153/sro.3116
- Mills, C. W. 1970. The Sociological Imagination. Harmondsworth: Penguin. First published in 1959 by Oxford University Press.
- Nodding, N. 1984. Caring, A Feminine Approach to Ethics and Moral Education. Berkeley: University of California Press.
- Oakley, A. 1981. “Interviewing Women: A Contradiction in Terms.” In Doing Feminist Research, edited by Helen Roberts, 30–61. London: Routledge and Kegan Paul.
- Pennebaker, J. 1990. Opening Up: The Healing Power of Expressing Emotions. New York: Guilford Press.
- Pietikainen, P. 2004. “Truth Hurts: The Sociobiology Debate, Moral Reading and the Idea of ‘Dangerous Knowledge’.” Social Epistemology 18 (2–3): 165–179. doi: 10.1080/0269172042000249273
- Renzetti, C., and R. Lee. 1993. Researching Sensitive Topics. Newbury Park, CA: Sage.
- Sampson, H., M. Bloor, and B. Fincham. 2008. “‘A Price Worth Paying?’: Considering the ‘Cost’ of Reflexive Research Methods and the Influence of Feminist Ways of ‘Doing.’.” Sociology 42 (5): 919–933. doi: 10.1177/0038038508094570
- Sikes, P. 1997. Parents Who Teach: Stories From Home and From School. London: Cassells.
- Sikes, P. 2006. “On Dodgy Ground? Problematics and Ethics in Educational Research?” International Journal of Research and Method in Education 29 (1): 105–117. doi: 10.1080/01406720500537502
- Sikes, P. 2015. “Hijacked by the Project?: Research Which Demands to be Done.” Research in Teacher Education 5 (1): 45–50.
- Sikes, P., and M. Hall. 2016. ““’It was Then That I Thought ‘Whaat? This is not my Dad’: The Implications of the ‘Still the Same Person’ Narrative for Children and Young People who Have a Parent with Dementia.” Dementia (Basel, Switzerland). Advance online publication. doi:10.1177/1471301216637204.
- Sikes, P., and M. Hall. 2017. “‘Every Time I see him He’s the Worst He’s Ever Been and the Best He’ll Ever be’: and Sadness in Children and Young People who Have a Parent with Dementia.” Mortality 22 (4): 324–388. doi: 10.1080/13576275.2016.1274297
- Sikes, P., and M. Hall. 2018. “The Impact of Parental Young Onset Dementia on Children and Young People’s Educational Careers.” British Educational Research Journal 44 (4): 593–607. doi: 10.1002/berj.3448
- Sikes, P., and H. Piper. 2010. Researching Sex and Lies in the Classroom: Allegations of Sexual Misconduct in Schools. London: Routledge/Falmer.
- Sikes, P., and A. Potts. 2008. Researching Education from the Inside: Investigations From Within. London: Routledge.
- Stanley, L. 1993. “The Knowing Because Experiencing Subject: Narratives, Lives, Autobiography.” Women’s Studies International Forum 16 (3): 205–215. doi: 10.1016/0277-5395(93)90051-A
- Tillmann-Healy, L. 2003. “Friendship as Method.” Qualitative Inquiry 9 (5): 729–749. doi: 10.1177/1077800403254894
- Tillmann-Healy, L., and C. Kiesinger. 2001. “Mirrors: Seeing Each Other and Ourselves Through Fieldwork.” In The Emotional Nature of Qualitative Research, edited by K. Gilbert. Boca Raton: CRC Press.
- Turner, D. 2016. “‘Research you Cannot Talk About’: A Personal Account of Researching Sudden, Unexpected Child Death.” Illness, Crisis and Loss 24 (2): 73–87. doi: 10.1177/1054137315587642
- Turner, L., N. Short, A. Grant, and T. Adams. 2018. International Perspectives on Autoethnographic Research and Practice. New York: Routledge.
- Van Maanen, J. 1988. Tales of the Field: On Writing Ethnography. Chicago: University of Chicago Press.
- Young Dementia UK. 2015. Young Onset Dementia: Facts and Figures. Accessed 8/10/18 . http://www.youngdementiauk.org/young-onset-dementia-facts-figures.