“I can control what I do with my daily life”: Occupational experiences of adolescents and young adults with Li-Fraumeni Syndrome

References

• Barlott, T., & Turpin, M. (2021). Desiring occupation: Theorising the passion, creativity, and social production of everyday life. Journal of Occupational Science. Advance online publication. https://doi.org/10.1080/14427591.2020.1867226
   Web of Science ®Google Scholar
• Baxter, M., Newman, R., Longpré, S., & Polo, K. (2017). Occupational therapy’s role in cancer survivorship as a chronic condition. American Journal of Occupational Therapy, 71(3), 7103090010P1–7103090010P7. https://doi.org/10.5014/ajot.2017.713001
   PubMed Web of Science ®Google Scholar
• Bowden, L., Reed, K., & Nicholson, E. (2018). The contribution of occupation to children’s experience of resilience: A qualitative descriptive study. Australian Occupational Therapy Journal, 65(4), 268–275. https://doi.org/10.1111/1440-1630.12462
   PubMed Web of Science ®Google Scholar
• Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Sage.
   Google Scholar
• Clark, F. A., Parham, D., Carlson, M. E., Frank, G., Jackson, J., Pierce, D., Wolfe, R. J., & Zemke, R. (1991). Occupational science: Academic innovation in the service of occupational therapy’s future. American Journal of Occupational Therapy, 45(4), 300–310. https://doi.org/10.5014/ajot.45.4.300
   PubMed Web of Science ®Google Scholar
• Cohn, E. (2019). Asserting our competence and affirming the value of occupation with confidence. American Journal of Occupational Therapy, 73(6), 7306150010p1–7306150010p10. https://doi.org/10.5014/ajot.2019.736002
   PubMed Web of Science ®Google Scholar
• Coccia, P. F. (2019). Overview of adolescent and young adult oncology. Journal of Oncology Practice, 15(5), 235–237. https://doi.org/10.1200/JOP.19.00075
   PubMed Web of Science ®Google Scholar
• Colaianni, D., & Provident, I. (2010). The benefits of and challenges to the use of occupation in hand therapy. Occupational Therapy in Health Care, 24(2), 130–146. https://doi.org/10.3109/07380570903349378
   PubMedGoogle Scholar
• Denzin, N. K., & Lincoln, Y. S. (2008). Collecting and interpreting qualitative materials. Sage.
   Google Scholar
• Dongbo, F., Ding, Y., McGowan, P., & Fu, H. (2006). Qualitative evaluation of chronic disease self management program (CDSMP) in Shanghai. Patient Education and Counseling, 61(3), 389–396. https://doi.org/10.1016/j.pec.2005.05.002
   PubMed Web of Science ®Google Scholar
• Forbes Shepherd, R., Werner-Lin, A., Keogh, L. A., Delatycki, M. B., & Forrest, L. E. (2021). “I need to know if I’m going to die young”: Adolescent and young adult experiences of genetic testing for Li–Fraumeni syndrome. Journal of Psychosocial Oncology, 39(1), 54–73. https://doi.org/10.1080/07347332.2020.1768199
   PubMed Web of Science ®Google Scholar
• Helgeson, V. S., & Zajdel, M. (2017). Adjusting to chronic health conditions. Annual Review of Psychology, 68, 545–571. https://doi.org/10.1146/annurev-psych-010416-044014
   PubMed Web of Science ®Google Scholar
• Hunt, E., & Papathomas, A. (2020). Being physically active through chronic illness: Life experiences of people with arthritis. Qualitative Research in Sport, Exercise and Health, 12(2), 242–255. https://doi.org/10.1080/2159676X.2019.1601637
   Web of Science ®Google Scholar
• Jiang, S. (2020). Positive distractions and play in the public spaces of pediatric healthcare environments: A literature review. HERD: Health Environments Research & Design Journal, 13(3), 171–197. https://doi.org/10.1177/1937586720901707
   Web of Science ®Google Scholar
• Kristjansdottir, O. B., Stenberg, U., Mirkovic, J., Krogseth, T., Ljoså, T. M., Stange, K. C., & Ruland, C. M. (2018). Personal strengths reported by people with chronic illness: A qualitative study. Health Expectations, 21(4), 787–795. https://doi.org/10.1111/hex.12674
   PubMed Web of Science ®Google Scholar
• Kristofferzon, M. L., Engström, M., & Nilsson, A. (2018). Coping mediates the relationship between sense of coherence and mental quality of life in patients with chronic illness: A cross-sectional study. Quality of Life Research, 27(7), 1855–1863. https://doi.org/10.1007/s11136-018-1845-0
   PubMed Web of Science ®Google Scholar
• LaRossa, R. (2005). Grounded theory methods and qualitative family research. Journal of Marriage and Family Therapy, 67(4), 837–857. https://doi.org/10.1111/j.1741-3737.2005.00179.x
   Web of Science ®Google Scholar
• Lindahl-Jacobsen, L., Hansen, D. G., Wæhrens, E. E., La Cour, K., & Søndergaard, J. (2015). Performance of activities of daily living among hospitalized cancer patients. Scandinavian Journal of Occupational Therapy, 22(2), 137–146. https://doi.org/10.3109/11038128.2014.985253
   PubMed Web of Science ®Google Scholar
• McLaughlin Gray, J. (1998). Putting occupation into practice: Occupation as ends, occupation as means. American Journal of Occupational Therapy, 52(5), 354–364. https://doi.org/10.5014/ajot.52.5.354
   PubMed Web of Science ®Google Scholar
• Mai, P. L., Best, A. F., Peters, J. A., DeCastro, R. M., Khincha, P. P., Loud, J. T., & Savage, S. A. (2016). Risks of first and subsequent cancers among TP53 mutation carriers in the National Cancer Institute Li-Fraumeni syndrome cohort. Cancer, 122(23), 3673–3681. https://doi.org/10.1002/cncr.30248
   PubMed Web of Science ®Google Scholar
• Marziliano, A., Tuman, M., & Moyer, A. (2020). The relationship between post-traumatic stress and post-traumatic growth in cancer patients and survivors: A systematic review and meta-analysis. PsychoOncology, 29(4), 604–616. https://doi.org/10.1002/pon.5314
   PubMed Web of Science ®Google Scholar
• McQuoid, J. (2017). Finding joy in poor health: The leisure-scapes of chronic illness. Social Science & Medicine, 183, 88–96. https://doi.org/10.1016/j.socscimed.2017.04.044
   PubMed Web of Science ®Google Scholar
• Parsonage, J., Naylor Lund, K., Dawes, H., Almoajil, H., & Eklund, M. (2020). An exploration of occupational choices in adolescence: A constructivist grounded theory study. Scandinavian Journal of Occupational Therapy. Advance online publication. https://doi.org/10.1080/11038128.2020.1839965
   PubMed Web of Science ®Google Scholar
• Patton, M. Q. (2005). Qualitative research: Encyclopedia of statistics in behavioral science. Wiley.
   Google Scholar
• Portela, D., Almada, M., Midão, L., & Costa, E. (2020). Instrumental activities of daily living (iADL) limitations in Europe: An assessment of SHARE data. International Journal of Environmental Research and Public Health, 17(20), Article 7387. https://doi.org/10.3390/ijerph17207387
   Web of Science ®Google Scholar
• Sleight, A. G. (2017). Occupational engagement in low-income Latina breast cancer survivors. American Journal of Occupational Therapy, 71(2), 7102100020p1–7102100020p8. https://doi.org/10.5014/ajot.2017.023739
   PubMed Web of Science ®Google Scholar
• Shaker, N. Z., & Taha, A. A. (2018). Effectiveness of distraction therapy on children’s pain perceptions during peripheral venous cannulation at pediatric teaching hospital in Erbil city. Erbil Journal of Nursing and Midwifery, 1(2), 75–84. https://doi.org/10.15218/ejnm.2018.10
   Google Scholar
• Sim, B. Y., Lee, Y. W., Kim, H., & Kim, S. H. (2015). Post-traumatic growth in stomach cancer survivors: Prevalence, correlates and relationship with health-related quality of life. European Journal of Oncology Nursing, 19(3), 230–236. https://doi.org/10.1016/j.ejon.2014.10.017
   PubMed Web of Science ®Google Scholar
• Thorne, S. (2016). Interpretive description: Qualitative research for applied practice. Routledge.
   Google Scholar
• Valdez, J. M., Nichols, K. E., & Kesserwan, C. (2017). Li-Fraumeni syndrome: A paradigm for the understanding of hereditary cancer predisposition. British Journal of Haematology, 176(4), 539–552. https://doi.org/10.1111/bjh.14461
   PubMed Web of Science ®Google Scholar
• Wæhrens, E. E., Bliddal, H., Danneskiold-Samsøe, B., Lund, H., & Fisher, A. G. (2012). Differences between questionnaire-and interview-based measures of activities of daily living (ADL) ability and their association with observed ADL ability in women with rheumatoid arthritis, knee osteoarthritis, and fibromyalgia. Scandinavian Journal of Rheumatology, 41(2), 95–102. https://doi.org/10.3109/03009742.2011.632380
   PubMed Web of Science ®Google Scholar
• Werner-Lin, A., Young, J. L., Wilsnack, C., Merrill, S. L., Groner, V., Greene, M. H., & Khincha, P. P. (2020). Waiting and “weighted down”: The challenge of anticipatory loss for individuals and families with Li-Fraumeni Syndrome. Familial Cancer, 19(3), 259–268. https://doi.org/10.1007/s10689-020-00173-6
   PubMed Web of Science ®Google Scholar
• Wensley, R., & Slade, A. (2012). Walking as a meaningful leisure occupation: The implications for occupational therapy. British Journal of Occupational Therapy, 75(2), 85–92. https://doi.org/10.4276/030802212X13286281651117
   Web of Science ®Google Scholar