Health literacy in cancer caregivers: a systematic review

Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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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Fig. 1

Data availability

Data sharing is not applicable to this article as no new data were created or analysed in this study.

Notes

  1. 1.

    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

  2. 2.

    Lone caregivers are characterized by their discomfort with professional recommendations and for focusing on the quality of biomedical care of the cancer survivor

  3. 3.

    Carrier caregivers are characterized by their emphasis of the survivor’s need for empathy and understanding

  4. 4.

    Partner caregivers are characterized by their openness to discuss difficult topics and their use of family support

  5. 5.

    Manager caregivers are characterized by their use of medical terminology, speaking for the cancer survivor and for their emphasis of medical information seeking

References

  1. 1.

    Zarcadoolas C, Pleasant A, Greer DS. Elaborating a definition of health literacy: a commentary. J Health Commun. 2003;8(Suppl 1):119–20.

    PubMed  Article  Google Scholar 

  2. 2.

    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.

    Article  Google Scholar 

  3. 3.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  4. 4.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  5. 5.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  6. 6.

    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.

    Article  Google Scholar 

  7. 7.

    Bevan JL, Pecchioni LL. Understanding the impact of family caregiver cancer literacy on patient health outcomes. Patient Educ Couns. 2008;71(3):356–64.

    PubMed  Article  Google Scholar 

  8. 8.

    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.

    PubMed  Article  Google Scholar 

  9. 9.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  10. 10.

    Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  11. 11.

    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.

    PubMed  Article  Google Scholar 

  12. 12.

    Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2(2):145–55.

    PubMed  PubMed Central  Google Scholar 

  13. 13.

    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.

    Article  Google Scholar 

  14. 14.

    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.

    CAS  Article  Google Scholar 

  15. 15.

    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.

    PubMed  Article  PubMed Central  Google Scholar 

  16. 16.

    Williams A, Bakitas M. Cancer family caregivers: a new direction for interventions. J Palliat Med. 2012;15(7):775–83.

    PubMed  PubMed Central  Article  Google Scholar 

  17. 17.

    Longacre ML, Ross EA, Fang CY. Caregiving choice and emotional stress among cancer caregivers. West J Nurs Res. 2014;36(6):806–24.

    PubMed  Article  PubMed Central  Google Scholar 

  18. 18.

    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.

    PubMed  Article  PubMed Central  Google Scholar 

  19. 19.

    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.

    PubMed  Article  PubMed Central  Google Scholar 

  20. 20.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  21. 21.

    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.

    PubMed  Article  Google Scholar 

  22. 22.

    Jefferies P, Gallagher P, Dunne S. The Paralympic athlete: a systematic review of the psychosocial literature. Prosthetics Orthot Int. 2012;36(3):278–89.

    Article  Google Scholar 

  23. 23.

    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.

    PubMed  Google Scholar 

  24. 24.

    Wittenberg E, Goldsmith JV, Kerr AM. Variation in health literacy among family caregiver communication types. Psychooncology. 2019;28(11):2181–7.

    PubMed  Article  Google Scholar 

  25. 25.

    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.

    PubMed  Article  Google Scholar 

  26. 26.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  27. 27.

    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.

    PubMed  PubMed Central  Google Scholar 

  28. 28.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  29. 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(1):658.

    PubMed  PubMed Central  Article  Google Scholar 

  30. 30.

    Norman CD, Skinner HA. eHEALS: the eHealth literacy scale. J Med Internet Res. 2006;8(4):e27.

    PubMed  PubMed Central  Article  Google Scholar 

  31. 31.

    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.

    PubMed  Article  Google Scholar 

  32. 32.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  33. 33.

    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.

    PubMed  Article  PubMed Central  Google Scholar 

  34. 34.

    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.

    PubMed  Article  PubMed Central  Google Scholar 

  35. 35.

    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.

    PubMed  PubMed Central  Article  Google Scholar 

  36. 36.

    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.

    PubMed  Article  PubMed Central  Google Scholar 

  37. 37.

    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.

    PubMed  PubMed Central  Google Scholar 

  38. 38.

    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.

    Article  Google Scholar 

  39. 39.

    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.

    Article  Google Scholar 

  40. 40.

    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/

  41. 41.

    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.

    PubMed  Article  Google Scholar 

  42. 42.

    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.

    Article  Google Scholar 

  43. 43.

    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.

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  44. 44.

    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

  45. 45.

    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

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Acknowledgements

The authors would like to thank Dr. Catherine Fassbender for her guidance and assistance, without which this research would not have been possible.

Funding

This study was self-funded.

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Correspondence to Simon Dunne.

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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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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

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Keywords

  • Health literacy
  • Cancer caregiver
  • Systematic review
  • Cancer
  • Oncology