While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
American Academy of Pediatrics, Committee on Hospital Care, Institute for Family-Centered Care. (2003). Family-centered care and the pediatrician's role. Pediatrics , 112(3), 691-696.
2.
Barnes, D.M. (1996). An analysis of the grounded theory method and the concept of culture. Qualitative Health Research, 6, 429-441.
3.
Benoit, C., Jansson, M., Millar, A., & Phillips, R. (2005). Community-academic research on hard-to-reach populations: Benefits and challenges. Qualitative Health Research, 15, 263-282.
4.
Bhopal, K. (2001). Researching South Asian women: Issues of sameness and difference in the research process. Journal of Gender Studies, 10(3), 279-286.
5.
Candilis, P.J., Lidz, C.W., & Arnold, R.M. (2006). The need to understand IRB deliberations. Ethics and Human Research, 28(1), 1-5.
6.
Chan, C., & Chow, A. (2006). Our memorial quilt: Recollections of observations from clinical practice on death, dying and bereavement. In C. Chan & A. Chow (Eds.), Death, dying and bereavement: A Hong Kong Chinese experience (pp. 15-30). Hong Kong: Hong Kong University Press.
7.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks, CA: Sage.
8.
Contro, N., Larson, J., Scofield, S., Sourkes, B., & Cohen, H. (2002). Family perspectives on the quality of pediatric palliative care. Archives of Pediatric and Adolescent Medicine , 156(1), 14-19.
9.
Davies, B., & Steele, R. (1996). Challenges of identifying children for palliative care. Journal of Palliative Care, 12(3), 5-8.
10.
Davies, D., & Dodd, J. (2002). Qualitative research and the question of rigor . Qualitative Health Research, 12, 279-298.
11.
Denzin, N.K., & Lincoln, Y.S. (2000). The discipline and practice of qualitative research . In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 1-28). Thousand Oaks, CA: Sage.
12.
Die Trill, M., & Kovalcik, R. (1997). The child with cancer: Influence of culture on truth-telling and patient care. Annals of the New York Academy of Sciences, 809, 197-210.
13.
Eide, P., & Allen, C.B. (2005). Recruiting transcultural qualitative research participants: A conceptual model. International Journal of Qualitative Methods, 4(2), 1-10.
14.
Freire, P. (2004). Pedagogy of indignation. Boulder, CO: Paradigm Publishers.
15.
Gil, E.F., & Bob, S. (1999). Culturally competent research: An ethical perspective . Clinical Psychology Review, 19(1), 45-55.
16.
Graham, R., Dussel, V., & Wolfe, J. (2006). Research. In A. Goldman, R. Hain, & S. Liben (Eds.), Oxford textbook of palliative care for children (pp. 615-647). New York: Oxford University Press.
17.
Hahn, E.A., & Cella, D. (2003). Health outcomes assessment in vulnerable populations: Measurement challenges and recommendations. Archives of Physical Medical Rehabilitation, 84(2), 35-42.
18.
Jones, P.S., Lee, J.W., Phillips, L.R., Zhang, X.E., & Jaceldo, K.B. (2001). An adaptation of Brislin's translation model for cross-cultural research. Nursing Research, 50(5), 300-304.
19.
Kagawa-Singer, M., & Blackhall, L.J. (2001). Negotiating cross-cultural issues at the end of life: "You got to go where he lives." Journal of the American Medical Association, 286, 2993-3002.
20.
Killien, M., Bigby, J.A., Champion, V., Fernandez-Repollet, E., Jackson, R.D., Kagawa-Singer, M., et al. (2000). Involving minority and underrepresented women in clinical trials: The National Centers of Excellence in women's health . Journal of Women's Health Gender Based Medicine, 9, 1061-1070.
Larson, E., Bratts, T., Zwanziger, J., & Stone, P. (2004). A survey of IRB process in 68 hospitals. Journal of Nursing Scholarship, 36(3), 260-264.
23.
Levkoff, S., & Sanchez, H. (2003). Lessons learned about minority recruitment and retention from the Centers on Minority Aging and Health Promotion. Gerontologist, 43(1), 18-26.
24.
Lincoln, Y.S., & Guba, N.K. (2000). Part III: Strategies of inquiry. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 366-378). Thousand Oaks, CA: Sage.
25.
Lincoln, Y.S., & Tierney, W.G. (2004). Qualitative research and institutional review boards. Qualitative Inquiry, 10(2), 219-234.
26.
Macedo, D., Dendrinos, B., & Gounari, P. (2003). The hegemony of English. Boulder, CO: Paradigm Publishers.
27.
Marin, G., Sabogal, F., Marin, B.V., Otero-Sabogal, R., & Perez-Stable, E.J. (1987). Development of a short acculturation scale for Hispanics. Hispanic Journal of Behavioral Science, 9(2), 183-205.
28.
McGoldrick, M., Giordano, J. & Pearce, J. (Eds.). (1996). Ethnicity and family therapy. New York: Guildford Press.
29.
National Institutes of Health. (1993). National Institutes of Health Revitalization Act of 1993. Retrieved February 21, 2008, from http://orwh.od.nih.gov/inclusion/exclusion/revitalization.pdf
30.
National Institutes of Health. (2002). Outreach notebook for the inclusion, recruitment and retention of women and minority subjects in clinical research. Retrieved October 30, 2006, from http://orwh.od.nih.gov/pubs/outreach.pdf
31.
Neufeld, A., Harrison, M.J., Hughes, K.D., Spitzer, D., & Stewart, M.J. (2001). Participation of immigrant women family caregivers in qualitative research. Western Journal of Nursing Research , 23, 575-591.
32.
Papadopoulos, I., & Lees, S. (2002). Developing culturally competent researchers. Journal of Advanced Nursing, 37(3), 258-264.
33.
Patsdaughter, C.A., Christensen, M.H., Kelly, B.R., Masters, J.A., & Ndiwane, A.N. (2001). Meeting folks where they are: Collecting data from ethnic groups in the community. Journal of Cultural Diversity , 8(4), 122-127.
34.
Rodriguez, M.D., Rodriguez, J., & Davis, M. (2006). Recruitment of first-generation Latinos in a rural community: The essential nature of personal contact. Family Process, 45(1), 87-100.
35.
Sandelowski, M. (2004). Using qualitative research. Qualitative Health Research, 14, 1366-1386.
36.
Simon, C.M., & Kodish, E.D. (2005). Step into my zapatos, Doc: Understanding and reducing communication disparities in the multicultural informed consent setting. Perspectives in Biology and Medicine, 48(1), S123-S137.
37.
Skaff, M.M., Chesla, C.A., Mycue, V., & Fisher, L. (2002). Lessons in cultural competence: Adapting research methodology for Latino participants. Journal of Community Psychology, 30(3), 305-323.
38.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. New York: Sage.
39.
Tierney, W.G., & Corwin, Z.B. (2007). The tensions between academic freedom and institutional review boards. Qualitative Inquiry, 13(3), 388-398.
40.
Tong, E., McGraw, S.A., Dobihal, E., Baggish, R., Cherlin, E., & Bradley, E.H. (2003). What is a good death? Minority and non-minority perspectives. Journal of Palliative Care, 19(3), 168-175.
41.
Tsai, J.H.C., Choe, J.H., Lim, J.M.C., Acorda, E., Chan, N.L., Taylor, V.M., et al. (2004). Developing culturally competent health knowledge: Issues of data analysis of cross-cultural, cross-language qualitative research. International Journal of Qualitative Methods, 3(4), 1-14.
42.
U.S. Census Bureau. (2000). Index of population projections. Retrieved January 16, 2008, from http://www.census.gov/population/projections
43.
Willgerodt, M.A. (2003). Using focus groups to develop culturally relevant instruments. Western Journal of Nursing Research, 25(7), 798-814.