Document Type : Original Article
Authors
1 Cancer Prevention Research Center, Isfahan University of Medical Sciences, Isfahan, Iran
2 Department of Health Education and Promotion, Isfahan University of Medical Sciences, Isfahan, Iran
3 Department of Pediatric Hematology and Oncology, Isfahan University of Medical Sciences, Isfahan, Iran
Abstract
BACKGROUND: Parents play a key role in the care, monitoring, management of symptoms
experienced in children with cancer, the support, and follow‑up of treatment. However, there is a
paucity of research as how to improve the health literacy of parents with cancer. The aim of this
study was to identify the best and most important strategies to promote health literacy in parents of
children with cancer.
MATERIALS AND METHODS: A two‑step modified Delphi method was used to establish consensus
in Iran in 2021. Fourteen experts representing oncology, clinical nursing, and faculty members of
nursing were selected by purposive sampling. In round one, 90 strategies to promote health literacy
obtained in the qualitative study were distributed to the experts, which were scored from 1 to 5. In
order to discuss statements without consensus in the first round, round two was held in a face‑to‑face
meeting. Descriptive statistics such as mean, standard deviation, and percentage of response
frequency were used to calculate agreement levels between experts.
RESULTS: In round one, 57 statements reached a consensus. In round two, 21 statements reached a
consensus. Finally, 78 statements reached consensus representing four domains including functional
health literacy, interactive health literacy, critical health literacy, and care health literacy.
CONCLUSION: Delphi method helps to identify the best and most important strategies to use in
health literacy promotion programs for parents of children with cancer. Identifying these strategies
will help health officials, planners, and policymakers.
Keywords
who.int/cancer/country‑profiles/IRN_2020.pdf?ua=1. [Last
accessed on 2021 Sep 20].
2. Hassanipour S, Fathipour M, Delam H, Ghorbani M, Abdzadeh E,
Arab‑Zozani M, et al. The Incidence of Childhood Cancer in Iran:
A systematic review and meta‑analysis. Iran J Ped Hematol Oncol
2019;9:193‑206.
3. Bastani F, Sayahi S. Assessment of spiritual health and hope
among mothers of children with leukaemia. EJC 2014;50:16.
4. Gholamian A, Bahrami M, Sherbafchi MR, Namnabati M. Effect
of a self‑help educational program with peer group on anxiety
of mothers of children with cancer: A clinical trial study. J Educ
Health Promot 2021;10:295.
5. Keim‑Malpass J, Letzkus LC, Kennedy C. Parent/caregiver
health literacy among children with special health care needs:
A systematic review of the literature. BMC Pediatr 2015;15:92.
6. Valizadeh L, Joonbakhsh F, Pashaee S. Determinants of care giving
burden in parents of child with cancer at Tabriz children medical
and training center. JCNM 2014;3:13‑20.
7. Kim H, Goldsmith JV, Sengupta S, Mahmood A, Powell MP,
Bhatt J, et al. Mobile health application and e‑health literacy:
Opportunities and concerns for cancer patients and caregivers.
J Cancer Educ 2019;34:3‑8.
8. Lynn C, Quast L, Rogers H, Effinger K, Gilleland‑Marchak J.
Systematic review of health literacy in childhood cancer patients,
survivors, and their caregivers. J Pediatr Psychol 2020;45:373‑85.
9. Wittenberg E, Goldsmith J, Ferrell B, Ragan SL. Promoting
improved family caregiver health literacy: Evaluation of caregiver
communication resources. Psychooncology 2017;26:935‑42.
10. Hosseini A, Rezaei M, Bahrami M, Abbasi M, Hariri H. The
relationship between dignity status and quality of life in Iranian
terminally ill patients with cancer. Iran J Nurs Midwifery Res
2017;22:178‑83.
11. Foster C, Myall M, Scott I, Sayers M, Brindle L, Cotterell P, et al.
‘You can’t say, “what about me?” I’m not the one with cancer’:
Information and support needs of relatives. Psychooncology 2014;24:705‑11.
12. Leonidou C, Giannousi Z. Experiences of caregivers of patients
with metastatic cancer: What can we learn from them to better
support them? Eur J Oncol Nurs 2018;32:25‑32.
13. Reisi M, Javadzade SH, Heydarabadi AB, Mostafavi F, Tavassoli E,
Sharifirad G. The relationship between functional health literacy
and health promoting behaviors among older adults. J Educ
Health Promot 2014;3:119.
14. JafariY, Tehrani H, Esmaily H, ShariatiM, Vahedian‑ShahroodiM.
Family‑centred empowerment program for health literacy
and self‑efficacy in family caregivers of patients with multiple
sclerosis. Scand J Caring Sci 2020;34:956‑63.
15. Morrison AK, Schapira MM, Gorelick MH, Hoffmann RG,
Brousseau DC. Low caregiver health literacy is associated with
higher pediatric emergency department use and nonurgent visits.
Acad Pediatr 2014;14:309‑14.
16. Yuen EY, Dodson S, Batterham RW, Knight T, Chirgwin J,
Livingston PM. Development of a conceptual model of
cancer caregiver health literacy. Eur J Cancer Care (Engl)
2016;25:294‑306.
17. Bahrami M, Eslami AA, Moafi A, Sayahi S. Development
of a health literacy program for parents of children with
cancer: A mixed‑methods study protocol. Int J Cancer Manag
2020;13:e108332.
18. Fitch K, Bernstein SJ, Aguilar MD, Burnand B, LaCalle JR,
Lázaro P, et al. The RAND/UCLA Appropriateness Method User’s
Manual. 1st ed. Santa Monica: RAND Corporation; 2001.
19. Junger S, Brearley S, Payne S, Mantel‑Teeuwisse AK, Lynch T,
Scholten W, et al. Consensus building on access to controlled
medicines: A four‑stage Delphi consensus procedure. J Pain
Symptom Manage 2013;46:897‑910.
20. Meshkat B, Cowman S, Gethin G, Ryan K, Wiley M, Brick A,
et al. Using an e‑Delphi technique in achieving consensus across
disciplines for developing best practice in day surgery in Ireland.
J Hosp Adm 2014;3:1‑8.
21. Wood L, Black P, Heng D, Kollmannsberger C, Moore R,
Soulieres D, et al. Using the Dephi technique to improve clinical
outcomes through the development of quality indicators in renal
cell carcinoma. J Oncol Pract 2013;9:262‑7.
22. Eubank BH, Mohtadi NG, Lafave MR, Wiley JP, Bois AJ,
Boorman RS, et al. Using the modified Delphi method to establish
clinical consensus for the diagnosis and treatment of patients with
rotator cuff pathology. BMC Med Res Methodol 2016;16:56.
23. Ridgely MS, Ahluwalia SC, Tom A, Vaiana ME, Motala A,
Silverman M, et al. What are the determinants of health system
performance? Findings from the literature and a technical expert
panel. Jt Comm J Qual Patient Saf 2020;46:87‑98.
24. Trevelyan EG, Robinson P. Delphi methodology in health
research: How to do it? Eur J Integr Med 2015;7:423‑28.
25. Cristiano E, Rojas J, Alonso R, Pinheiro AA, Bacile EA,
Balbuena ME, et al. Consensus recommendations on the
management of multiple sclerosis patients in Argentina. J Neurol
Sci 2020;409:116609.
26. McCarthy B. Family members of patients with cancer: What they
know, how they know and what they want to know. Eur J Oncol
Nurs 2011;15:428‑41.
27. Nutbeam D. Health literacy as a public goal: A challenge for
contemporary health education and communication strategies
into the 21st century. Health Promot Int 2000;15:259‑67.
28. Sorensen K, Broucke SV, Fullam J, Doyle G, Pelikan J, Slonska Z,
et al. Health literacy and public health: A systematic review
and integration of definitions and models. BMC Public Health
2012;25:80.
29. Osborne RH, Batterham RW Elsworth GR, Hawkins M,
Buchbinder R. The grounded psychometric development and
initial validation of the Health Literacy Questionnaire (HLQ).
BMC Public Health 2013;13:658.
30. Macabasco‑O’Connell A, Fry‑Bowers EK. Knowledge and
perceptions of health literacy among nursing professionals.
J Health Commun 2011;16 Suppl 3:295‑307.
31. Goldsmith JV, Terui S. Family oncology caregivers and relational
health literacy. Challenges 2018;9:35‑45.
32. Lambert V, Keogh D. Health literacy and its importance for
effective communication. Part 1. Nurs Child Young People
2014;26:31‑7.
33. Harrop E, Byrne A, Nelson A. “It’s alright to ask for help”:
Findings from a qualitative study exploring the information and
support needs of family carers at the end of life. BMC Palliat Care
2014;13:22.
34. Slater PJ, Fielden PE, Bradford NK. The oncology family app:
providing information and support for families caring for their
child with cancer. J Pediatr Oncol Nurs 2018;35:94‑102.
)