Cancer caregivers play a vital role in the care and health decision-making of cancer survivors. Consequently, their health literacy levels may be particularly important, as low levels may impede adequate care provision. As such, the current review aimed to systematically examine the literature on health literacy amongst cancer caregivers.
We systematically searched the following databases using controlled vocabulary and free-text terms: PsychINFO, MEDLINE, EMBASE, CINAHL and Web of Science. Peer-reviewed empirical studies that explicitly measured and reported cancer caregiver health literacy levels were included.
The search yielded six articles consisting of 593 cancer caregivers exploring health literacy and eHealth literacy. There was substantial variation in health literacy measurement tools used across included studies, precluding the possibility of conducting a meta-analysis. The included articles reported significant associations (limited to single studies) between caregiver health/eHealth literacy and (i) cancer survivor demographics, (ii) caregivers’ communication style, (iii) caregiver Internet access and (iv) caregiver coping strategies.
Findings highlight a need for future longitudinal research regarding cancer caregiver health literacy incorporating more standardized and population-specific measurement approaches. In particular, there is a pressing need to investigate factors associated with cancer caregiver health literacy to inform the development/delivery of future interventions.
Implications for Cancer Survivors
Future high-quality research which investigates the factors which contribute towards sub-optimal health literacy amongst cancer caregivers would aid in the development of appropriate and effective health literacy interventions in these groups. Such interventions would allow this important group to provide appropriate support to cancer survivors and enhance survivors’ engagement in their health and wellbeing.
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Data sharing is not applicable to this article as no new data were created or analysed in this study.
Caregiver types are based upon previous communication research amongst cancer caregivers based on interaction patterns for family communication and are dependent on the relationship between the carer and the cancer survivor
Lone caregivers are characterized by their discomfort with professional recommendations and for focusing on the quality of biomedical care of the cancer survivor
Carrier caregivers are characterized by their emphasis of the survivor’s need for empathy and understanding
Partner caregivers are characterized by their openness to discuss difficult topics and their use of family support
Manager caregivers are characterized by their use of medical terminology, speaking for the cancer survivor and for their emphasis of medical information seeking
Zarcadoolas C, Pleasant A, Greer DS. Elaborating a definition of health literacy: a commentary. J Health Commun. 2003;8(Suppl 1):119–20.
Yuen EYN, Knight T, Dodson S, Ricciardelli L, Burney S, Livingston PM. Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing. BMC Fam Pract. 2014;15(1):210–34.
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.
Mead EL, Doorenbos AZ, Javid SH, Haozous EA, Alvord LA, Flum DR, et al. Shared decision-making for cancer care among racial and ethnic minorities: a systematic review. Am J Public Health. 2013;103(12):e15–29.
Campesino M, Saenz DS, Choi M, Krouse RS. Perceived discrimination and ethnic identity among breast cancer survivors. Oncol Nurs Forum. 2012;39(2):E91–100.
Costas-Muniz R, Sen R, Leng J, Aragones A, Ramirez J, Gany F. Cancer stage knowledge and desire for information: mismatch in Latino cancer patients? J Cancer Educ Off J Am Assoc Cancer Educ. 2013;28(3):458–65.
Bevan JL, Pecchioni LL. Understanding the impact of family caregiver cancer literacy on patient health outcomes. Patient Educ Couns. 2008;71(3):356–64.
Northouse LL, Katapodi MC, Schafenacker AM, Weiss D. The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Oncol Nurs. 2012;28(4):236–45.
van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, et al. Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psychooncology. 2011;20(1):44–52.
Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.
Yuen EYN, Knight T, Ricciardelli LA, Burney S. Health literacy of caregivers of adult care recipients: a systematic scoping review. Health Soc Care Community. 2018;26(2):e191–206.
Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2(2):145–55.
DuBenske LL, Gustafson DH, Shaw BR, Cleary JF. Web-based cancer communication and decision making systems: connecting patients, caregivers, and clinicians for improved health outcomes. Med Decis Mak. 2010;30(6):732–44.
Yuen EYN, 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(2):294–306.
Dolce MC. The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers. Oncol Nurs Forum. 2011;38(3):353–9.
Williams A, Bakitas M. Cancer family caregivers: a new direction for interventions. J Palliat Med. 2012;15(7):775–83.
Longacre ML, Ross EA, Fang CY. Caregiving choice and emotional stress among cancer caregivers. West J Nurs Res. 2014;36(6):806–24.
Robinson J, Gott M, Ingleton C. Patient and family experiences of palliative care in hospital: what do we know? An integrative review. Palliat Med. 2014;28(1):18–33.
Hubbard G, Cunningham N, Rowa-Dewar N, Forbat L, Kearney N. Treatment decision-making in cancer care: the role of the carer. J Clin Nurs. 2010;19:2023–31.
Lund L, Ross L, Petersen MA, Groenvold M. Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey. BMC Cancer. 2014;14:541.
Dunne S, Mooney O, Coffey L, Sharp L, Desmond D, Timon C, et al. Psychological variables associated with quality of life following primary treatment for head and neck cancer: a systematic review of the literature from 2004 to 2015. Psychooncology. 2017;26(2):149–60.
Jefferies P, Gallagher P, Dunne S. The Paralympic athlete: a systematic review of the psychosocial literature. Prosthetics Orthot Int. 2012;36(3):278–89.
Lim BT, Huang Y, Shepherd HL, Shaw J, Costa D, Durcinoska I, et al. Health literacy and cancer care coordination in Chinese migrant patients and their carers: a cross-sectional survey. Psychooncology. 2019;28(5):1048–55.
Wittenberg E, Goldsmith JV, Kerr AM. Variation in health literacy among family caregiver communication types. Psychooncology. 2019;28(11):2181–7.
Gelkopf MJ, Chang TE, Zhang Y, Zhang C, Yi K, Fang V, et al. Parental coping with retinoblastoma diagnosis. J Psychosoc Oncol. 2019;37(3):319–34.
Heckel L, Fennell KM, Reynolds J, Boltong A, Botti M, Osborne RH, et al. Efficacy of a telephone outcall program to reduce caregiver burden among caregivers of cancer patients [PROTECT]: a randomised controlled trial. BMC Cancer. 2018;18(1):59.
Song L, Tatum K, Greene G, Chen RC. eHealth literacy and partner involvement in treatment decision making for men with newly diagnosed localized prostate cancer. Oncol Nurs Forum. 2017 Mar 1;44(2):225–33.
Kayser L, Hansen-Nord NS, Osborne RH, Tjønneland A, Hansen RD. Responses and relationship dynamics of men and their spouses during active surveillance for prostate cancer: health literacy as an inquiry framework. BMC Public Health. 2015;15:741.
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(1):658.
Norman CD, Skinner HA. eHEALS: the eHealth literacy scale. J Med Internet Res. 2006;8(4):e27.
Kolarcik P, Cepova E, Madarasova Geckova A, Elsworth GR, Batterham RW, Osborne RH. Structural properties and psychometric improvements of the Health Literacy Questionnaire in a Slovak population. Int J Public Health. 2017;62(5):591–604.
Jessup RL, Osborne RH, Beauchamp A, Bourne A, Buchbinder R. Health literacy of recently hospitalised patients: a cross-sectional survey using the Health Literacy Questionnaire (HLQ). BMC Health Serv Res. 2017;17(1):52.
Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97–107.
Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol. 2011;64(4):366–79.
Efthymiou A, Middleton N, Charalambous A, Papastavrou E. Adapting the eHealth literacy scale for carers of people with chronic diseases (eHeals-Carer) in a sample of Greek and Cypriot carers of people with dementia: reliability and validation study. J Med Internet Res. 2019;21(11):e12504.
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 Feb;34(1):3–8.
Ghazisaeedi M, Safari A, Sheikhtaheri A, Dalvand H. The effect of an android-based application on the knowledge of the caregivers of children with cerebral palsy. Med J Islam Repub Iran. 2016;30:456.
Rathnayake S, Moyle W, Jones CJ, Calleja P. Development of an mHealth application for family carers of people with dementia: a study protocol. Collegian. 2019 Apr 1;26(2):295–301.
de Frutos ML, Casellas-Grau A, Sumalla EC, de Gracia M, Borràs JM, Arnedo CO. A systematic and comprehensive review of internet use in cancer patients: psychological factors. Psychooncology. 2020;29(1):6–16.
Kim H. Understanding Internet use among dementia caregivers: results of secondary data analysis using the US caregiver survey data. Interact J Med Res [Internet]. 2015 Feb 23 [cited 2020 May 8];4(1). Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4376175/
Levin JB, Peterson PN, Dolansky MA, Boxer RS. Health literacy and heart failure management in patient-caregiver dyads. J Card Fail. 2014 Oct;20(10):755–61.
Abdel Rahman TT. Health literacy: prevalence among elderly care givers and its impact on the frequency of elderly hospitalization and elderly health related quality of life. Adv Aging Res. 2014;03(05):380–7.
Richtering SS, Morris R, Soh S-E, Barker A, Bampi F, Neubeck L, et al. Examination of an eHealth literacy scale and a health literacy scale in a population with moderate to high cardiovascular risk: Rasch analyses. Brucki S, editor. PLoS One. 2017;12(4):e0175372.
Wittenberg E, Goldsmith J, Parnell TA. Development of a communication and health literacy curriculum: optimizing the informal cancer caregiver role. Psychooncology [Internet]. 2020 Feb 13; Available from: http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2020-11615-001&site=ehost-live
National Cancer Registry Ireland. CancerIncidenceProjections_NCRI_fullreport_09042019_final.pdf [Internet]. https://www.ncri.ie/sites/ncri/files/pubs/CancerIncidenceProjections_NCRI_fullreport_09042019_final.pdf. [cited 2020 May 13]. Available from: https://www.ncri.ie/sites/ncri/files/pubs/CancerIncidenceProjections_NCRI_fullreport_09042019_final.pdf
The authors would like to thank Dr. Catherine Fassbender for her guidance and assistance, without which this research would not have been possible.
This study was self-funded.
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The authors declare that they have no conflict of interest.
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Appendix 1 Search strategy by database
Appendix 1 Search strategy by database
PsychINFO Search terms [(DE ‘Health Literacy’ explode) OR (free-text terms (‘Health Literacy’) OR (‘Literacy’) OR (‘Health and Literacy’) OR (‘Assessment of Health Literacy’)] AND [DE (‘Neoplasm’ explode) OR (free-text terms (‘Cancer’) OR (‘Oncology’) OR (‘Neoplasms’) OR (‘Tumour’) OR (Tumour’)] AND [(‘DE Caregivers’ explode) OR (free-text terms (‘Caregivers’) OR (‘Caregiver’) OR (‘Family’) OR (‘Family members’) OR (‘Relatives’) OR (‘Spouse’) OR (‘Spouses’) OR (‘Support Person’) OR (‘Partner’) OR (‘Carers’) OR (‘Significant Others’) OR (‘Informal Caregiver’) OR (‘Carer’) OR (‘Husband’) OR (‘Wife’) OR (‘Support People’) OR (‘Significant Other’) OR (‘Informal Caregivers’) OR (‘Informal Caregiver’)].
MEDLINE Search terms [(MH ‘Health Literacy’ explode) OR (free-text terms (‘Health Literacy’) OR (‘Literacy’) OR (‘Health and Literacy’) OR (‘Assessment of Health Literacy’)] AND [(MH ‘Neoplasms’ explode) OR (free-text terms (‘Cancer’) OR (‘Oncology’) OR (‘Neoplasms’) OR (‘Tumour’) OR (Tumour’)] AND [(‘MH Caregivers’ explode) OR (free-text terms (‘Caregivers’) OR (‘Caregiver’) OR (‘Family’) OR (‘Family members’) OR (‘Relatives’) OR (‘Spouse’) OR (‘Spouses’) OR (‘Support Person’) OR (‘Partner’) OR (‘Carers’) OR (‘Significant Others’) OR (‘Informal Caregiver’) OR (‘Carer’) OR (‘Husband’) OR (‘Wife’) OR (‘Support People’) OR (‘Significant Other’) OR (‘Informal Caregivers’) OR (‘Informal Caregiver’)].
CINAHL Search terms [(MH ‘Health Literacy’ explode) OR (free-text terms (‘Health Literacy’) OR (‘Literacy’) OR (‘Health and Literacy’) OR (‘Assessment of Health Literacy’)] AND [(MH ‘Neoplasms’ explode) OR (free-text terms (‘Cancer’) OR (‘Oncology’) OR (‘Neoplasms’) OR (‘Tumour’) OR (Tumour’)] AND [(‘MH Caregivers’ explode) OR (free-text terms (‘Caregivers’) OR (‘Caregiver’) OR (‘Family’) OR (‘Family members’) OR (‘Relatives’) OR (‘Spouse’) OR (‘Spouses’) OR (‘Support Person’) OR (‘Partner’) OR (‘Carers’) OR (‘Significant Others’) OR (‘Informal Caregiver’) OR (‘Carer’) OR (‘Husband’) OR (‘Wife’) OR (‘Support People’) OR (‘Significant Other’) OR (‘Informal Caregivers’) OR (‘Informal Caregiver’)].
EMBASE Search terms [(‘health literacy’/exp. OR ‘health) OR (‘literacy’/exp. OR literacy’) OR (‘health and literacy’) OR (‘assessment of health literacy’) OR (‘health literacy’/exp’)] AND [(‘ neoplasms’/exp OR neoplasms’) OR (‘cancer’/exp OR cancer’) OR (‘oncology’/exp OR oncology’) OR (‘tumour’/exp OR tumour’) OR (neoplasm’/exp’)] AND [(‘caregiver’/exp’) OR (‘caregivers’/exp OR caregivers’) OR (‘caregiver’/exp OR caregiver’) OR (‘family member’/exp OR ‘family member’ OR ((‘family’/exp OR family) AND member)’) OR (‘family members’ OR ((‘family’/exp. OR family) AND members) OR (‘relatives’) OR (‘spouse’/exp. OR spouse’) OR (‘spouses’/exp. OR spouses’) OR (‘support person’ OR ((‘support’/exp OR support) AND person) OR (‘support people’ OR ((‘support’/exp OR support) AND people’) OR (‘partner’/exp OR partner’) OR (‘husband’/exp. OR husband’) OR (‘wife’/exp OR wife’) OR (‘carers’/exp OR carers’) OR (‘carer’/exp OR carer’) OR (‘significant other’ OR (significant AND other)’ OR (‘significant others’ OR (significant AND others)’) OR (‘informal caregivers’ OR (informal AND (‘caregivers’/exp OR caregivers))’) OR (‘informal caregiver’/exp OR ‘informal caregiver’ OR (informal AND (‘caregiver’/exp OR caregiver))’)].
WEB OF SCIENCE Search terms [(‘Health Literacy’) OR (‘Literacy’) OR (‘Health and Literacy’) OR (‘Assessment of Health Literacy’)] AND [(‘Cancer’) OR (‘Oncology’) OR (‘Neoplasms’) OR (‘Tumour’) OR (Tumour’)] AND [(‘Caregiver’) OR (‘Family’) OR (‘Family members’) OR (‘Relatives’) OR (‘Spouse’) OR (‘Spouses’) OR (‘Support Person’) OR (‘Partner’) OR (‘Carers’) OR (‘Significant Others’) OR (‘Informal Caregiver’) OR (‘Carer’) OR (‘Husband’) OR (‘Wife’) OR (‘Support People’) OR (‘Significant Other’) OR (‘Informal Caregivers’) OR (‘Informal Caregiver’)].
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Cite this article
Moore, C., Hassett, D. & Dunne, S. Health literacy in cancer caregivers: a systematic review. J Cancer Surviv (2021). https://doi.org/10.1007/s11764-020-00975-8
- Health literacy
- Cancer caregiver
- Systematic review