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.

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’)].