This qualitative study engaged with breast cancer patients to create a standardised cancer education booklet. This paper identifies lessons from that engagement process, showing how patients experienced their cancer education and how they were able to ensure their concerns and priorities were included in the standardised patient education booklet.
Method:
In semi-structured focus groups and interviews, patients reviewed the print materials they had received and a draft standardised booklet. Discussions were then analysed thematically through comparison and interpretive coding.
Results:
Patient education needs to provide key information on breast cancer and its treatment while also providing the kind of educational support that can strengthen patient capacity to take decisions, feel a sense of control, and move through the journey with optimism and courage.
Conclusion:
Patient education, including standardised materials, can reflect patient autonomy and empowerment if patients are engaged in developing educational materials in a broad, inclusive and sustained way.
AttaiDJCowherMSAl-HamadaniM, et al. (2015) Twitter social media is an effective tool for breast cancer patient education and support: Patient-reported outcomes by survey. Journal of Medical Internet Research17(7): 1–8.
2.
BarberTSharifBTeareS, et al. (2019) Qualitative study to elicit patients’ and primary care physicians’ perspectives on the use of a self-management mobile health application for knee osteoarthritis. BMJ Open9: e024016.
3.
ButowPBrindleEMcConnellD, et al. (1998) Information booklets about cancer: Factors influencing patient satisfaction and utilisation. Patient Education and Counseling33: 129–141.
4.
ChelfJHAgrePACheneyL, et al. (2001) Cancer-related patient education: An overview of the last decade of evaluation and research. Oncology Nursing Forum28(7): 1137–1149.
5.
CoulterAParsonsSAskhanJ (2008) Policy Brief: Where are the Patients in Decision-Making about Their Own Care?Copenhagen: World Health Organization.
6.
CoxAJenkinsVCattS, et al. (2006) Information needs and experiences: An audit of UK cancer patients. European Journal of Oncology Nursing10(4): 263–272.
7.
DegnerLFKrustjansonLJBowmanD, et al. (1997) Informational needs and decisional preferences in women with breast cancer. JAMA277(18): 1485–1492.
8.
DunnJStegingaSKRoseP, et al. (2004) Evaluating patient education materials about radiation therapy. Patient Education and Counseling52: 325–332.
9.
EganJP (2012) Advocacy, care, promotion and research: Adult educators working with the community for health. In: EnglishLM (ed.) Adult Education and Health. London: University of Toronto, pp. 64–75.
10.
Farrell-MillerPGentryP (1989) How effective are your patient education materials? Guidelines for developing and evaluating written educational materials. The Diabetes Educator15(5): 418–422.
11.
Feldman-StewartDBrennenstuhlBSMichaelD (2007) A purpose-based evaluation of information for patients: An approach to measuring effectiveness. Patient Education and Counseling65: 311–319.
12.
Gauthier-FrohlickDBoykoSConlonM, et al. (2010) Evaluation of cancer patient education and services. Journal of Cancer Education25: 43–48.
13.
GrumanJRHolmesMRFrenchME, et al. (2010) From patient education to patient engagement: Implications for the field of patient education. Patient Education and Counseling78: 350–356.
14.
HuberJTShapiroRMGillaspyML (2012) Top down versus bottom up: The social construction of the health literacy movement. The Library Quarterly: Information, Community, Policy82(4): 429–451.
15.
LacailleDWhiteMABackmanCL, et al. (2007) Problems faced at work due to inflammatory arthritis: New insights gained from understanding patient perspectives. Arthritis and Rheumatism57(7): 1269–1279.
16.
LavalleeJFGroganSAustinCA (2019) Cancer patients’ family members’ experiences of the information and support provided by healthcare professionals. Health Education Journal78(4): 416–427.
17.
MarlettNJShklarovSMarshallD, et al. (2015) Building new roles and relationships in research: A model of patient engagement research. Quality of Life Research24(5): 1057–1067.
18.
MatthewsC (2014) Critical pedagogy in health education. Health Education Journal73(5): 600–609.
19.
MerriamS (1977) Philosophical perspectives on adult education: A critical review of the literature. Adult Education27(4): 195–208.
20.
MezirowJ (1991) Transformative Dimensions of Adult Learning. San Francisco, CA: Jossey-Bass.
21.
RootmanIRonsonB (2004) Literacy and health research in Canada: Where have we been and where should we go?Canadian Journal of Public Health96(2): 62–77.
22.
RuttenLJFAroraNKBakosAD, et al. (2005) Information needs and sources of information among cancer patients: A systematic review of research (1980-2003). Patient Education and Counseling57: 250–261.
23.
SchopfACUllrichANaglM, et al. (2016) Group health education in inpatient rehabilitation: Patients’ role perceptions. Health Education Journal75(3): 289–305.
24.
SmithSKDixonATrevenaL, et al. (2009) Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Social Science and Medicine69: 1805–1812.
25.
UhmSLiaboKStewartR, et al. (2012) Patient and public perspectives shaping scientific and medical research: Panels for data, discussions, and decisions. Patient Intelligence4: 1–10.
