Main findings
For our study participants, general information about COVID-19 and governmental measures was often too difficult. The information was considered abundant, complicated, and sometimes contradictory. Participants valued personalized information from their own health care professionals, especially in the context of chronic illnesses. However, only a few had received such information. Trust in information providers was crucial for understanding information and complying with measures. Whereas some participants had little trust in the government, a large majority trusted their health care professionals. General health care problems resulting from COVID-19 measures were postponement of regular care and difficulty with digital contacts.
Role of primary care
Based on our interview results, we have identified three themes where primary care professionals could be of importance to their patients with limited HL: (1) as a proactive source of personalized information about COVID-19; (2) to answer individual questions about COVID-19, the governmental measures against it and the considerations behind these measures; and (3) to offer advice and support in case of deterioration of other health issues due to COVID-19 measures. For all three themes, two crucial conditions came forward: accessibility and trust. With respect to accessibility, having difficulty with digital consultations was specifically mentioned. With respect to trust, a lack of faith in health care professionals was a barrier to accepting information and support from them.
Providing information about COVID-19
Several participants lacked basic knowledge about the virus, the background of governmental measures, and the use of testing and vaccinating, which revealed a need for tailored information provision. Personal, proactive information provision by a health care professional was highly appreciated, especially in the context of a chronic illness. Knowing the context of their patients, primary care professionals are in the ideal position to take this role.
Answering individual questions about COVID-19
Many participants had questions about COVID-19 that were not satisfactorily answered through general information, about both general and personal issues (e.g., policy choices and own health). Lacking other personal information channels tailored to individuals with limited HL, they may highly benefit from discussing these questions with their own primary care professionals.
Offering support for other health issues
Deterioration of other health issues and mental symptoms due to postponement of specialized care (especially hospital care, physiotherapy and mental care) was frequently mentioned as a consequence of COVID-19, implying a need for support. Primary care professionals would be the most suitable providers of this support.
Our findings are supported by several other studies. The need to tailor COVID-19-related information to specific groups and the possible role for primary care in that were emphasized before [21, 22]. For individuals with limited HL specifically, being approached by a health care professional was mentioned as an effective way to be informed about COVID-19 [23]. This has been considered even more important when trust in the government is lacking [10]. Primary care professionals can take this role, provided that they visibly demonstrate the trust needed [24]. Also, with respect to general health issues, primary care has been reported to be an important information provider for individuals with limited HL, especially among the elderly and chronically ill [25]. However, as was reported by an interview study among primary care professionals in the USA [26], these individuals are the most difficult to reach and manage during a pandemic (e.g., due to difficulty with digital consultations), which stresses the needed attention for accessibility we described. In line with our findings, it has been recommended to prioritize and proactively contact vulnerable patients in primary care during a pandemic [27].
Strengths and limitations
To our knowledge, this is the first study that reports qualitative, in-depth results on the ways in which individuals with limited HL cope with information about COVID-19 and the governmental measures against it.
To select people with limited HL, we used a valid and reliable self-report questionnaire that addresses difficulties with accessing, understanding, appraising and applying information, the HLS-EU-Q16 [18, 19]. A self-report questionnaire implies that a certain level of literacy is needed, thereby excluding individuals who have severe difficulties with reading and writing. However, the HLS-EU has been shown suitable to be used for people with limited literacy [28]. To include people with reading and writing difficulties, we purposively sampled this group through the Reading and Writing Foundation; although HL was not formally assessed in these individuals, their difficulties in reading and writing implied that at least their functional HL was limited [20].
It might be argued whether our findings are specific for people with limited HL, as they may apply to a larger part of the general population. However, difficulty with understanding and applying information is more common among people with limited HL, and so is a lack of trust in the government [10]. Also, in practice, primary care professionals do not need to only approach patients with limited HL when informing about COVID-19, since other patients value clear information as well.
All our participants had at least one health problem, which makes our results in particular applicable to individuals with chronic illnesses or other health-related issues. However, these are exactly the individuals who benefit most from information provision by primary care professionals [25].