The relevance of context in understanding health literacy skills: Findings from a qualitative study

Abstract Background Conceptualizing health literacy as a relational concept, which involves how individuals interact with complex health and social systems, requires a greater understanding of the context of people's health experiences. Objectives To describe individuals’ experiences of accessing, understanding, appraising and applying health information; explore the barriers and facilitators to using these skills; and to describe the experience of information exchange in health consultations. Design A longitudinal qualitative methodology with thematic analysis of interviews was used. Health literacy levels were assessed using the HLS‐EU‐47–Item Questionnaire. Findings are presented from the first round of data collection. Setting and participants Twenty‐six participants purposefully selected from a CVD risk reduction programme at three separate time points. Results Four key themes identified: using health literacy capacities for managing health; psychological and structural factors that impact on these capacities; and the relationship quality with the health‐care provider (HCP). Although limited health literacy was prevalent across the sample (65%), all individuals were very proactive in attempting to utilize health literacy skills. Findings emphasize the importance of contextual factors such as the quality of communication with the health‐care provider, perceptions of control, attitudes to family medical history, navigating structural barriers and being supported in managing treatment and medication side‐effects. Discussion and Conclusion Findings are relevant for health‐care providers in order to enhance the patient‐provider relationship and to ensure optimum health outcomes for all individuals regardless of health literacy levels.

is known about how people develop their health literacy skills in the context of managing their health and illness, how this changes over time and the barriers and facilitators that may be experienced in this process. [1][2][3][4][5][6][7] Although the importance of the social context of health decision making has been previously highlighted, [8][9][10][11][12] conceptualizations of health literacy have been slow to move away from framing health literacy primarily as a capacity of the individual. The main emphasis of health literacy studies to date has been on measurement development and this has occurred with little associated research into health professionals' communication skills. [13][14][15] The majority of studies have focussed on the functional level of health literacy as outlined by Nutbeam 16,17 with far less work exploring the communicative and critical levels of health literacy. 9 Chinn (2011) advocates the use of qualitative methodologies to explore "how people actually interact critically with health information in real-life situations". 18(p64) Lai et al. (2015) also argue that health literacy studies need to shift from a predominantly patient focus to one that encompasses health interactions and health contexts. 19 The current study sets out to do this and employs a qualitative methodology, incorporating the HLS-EU conceptual model, 15 to explore individuals' experiences. This is a recently developed comprehensive model of health literacy that emphasizes the capacities necessary to be considered health literate and to make decisions about health: access, understanding, appraisal and application, which can be linked to functional, interactive and critical levels of health literacy. 20 The HLS-EU model proposes that individuals who possess all four capacities are more likely to be able to successfully navigate three key dimensions of the health continuum: the health-care setting, the disease prevention system and communitybased health promotion. 15 This paper presents findings from the first phase of a larger longitudinal qualitative study, consisting of three phases, which aims to examine developments in the health literacy of individuals over time.
The objectives of phase one were to: describe individuals' experiences of accessing, understanding, appraising and applying health information; explore the context (ie the barriers and facilitators) to using these skills, and to describe the experience of information exchange in health consultations. The overall aim of this study was to explore the use of health literacy skills in the context of individuals managing risk factors for CVD.

| Study design
This study describes phase one of a longitudinal qualitative study design, which employs repeat interview methodology at three separate time points (see Table 1) to examine developments in health literacy of individuals over time. Data on health literacy levels were collected at time points one and three, and this contributed to a layered approach as advocated by Saldaña. 21

| Participants
The concept of purposeful sampling is used in qualitative research to select individuals/sites for study because they can purposefully inform an understanding of the research problem and central phenomenon in the study. 22 In this study, purposeful sampling was employed to select individuals attending a community-based structured cardiovascular risk reduction programme and so obtain the views and experiences of people with a range of risk factors for cardiovascular disease, as well as those with established disease (see Table 2).
The twelve-week programme integrates the care of individuals with established heart disease and those at high multifactorial risk of developing the disease, into a local community-based programme 20 that was originally developed at Imperial College London following the EUROACTION trial. 19 The programme in this study is provided in a community setting. Initial recruitment took place in conjunction with the programme nurse who identified individuals who were cognitively able to participate and had an understanding of the English language. A unique feature of the programme is that partners of referred patients are also invited to complete the programme, and in this study, five partners were included. Recruitment took place between February and December 2014.

| Profile of study participants
All of the participants were commencing a twelve-week CVD risk reduction programme and were referred through various pathways including general practice and hospital departments such as cardiology, stroke and endocrinology. Participant characteristics are summarized in Table 2. Interview and survey administration was piloted prior to commencement of data collection with a small number of individuals attending the structured programme.

| Ethical considerations
The study was independently reviewed and approved by the Research

| RESULTS
General health literacy scores were calculated for all participants and indicated a high level of limited health literacy across the sample at 65% (n=17) with a lesser proportion having an adequate level of health literacy (35%, n=9). The limited level of health literacy reported here is significantly higher than levels reported in the overall European Health Literacy survey 1 (47%) and in the Irish sample of the European survey (40%). 20 These findings correspond with those for population subgroups with lower education and social class levels, and higher rates of disease and health service use. 1 In this study, the sample was mixed across demographics as depicted in Table 3 below.
Statistical tests for differences in general health literacy scores for education and social class 25 were not significant (P=.265 and .389, respectively).

| Interview data
The interviews yielded rich data relating to participants' experiences and strategies for accessing, understanding, appraising and applying health information across various health contexts. The data also identified barriers and facilitators which can impact on health literacy practices for the individuals, and these are depicted in the four interlinked themes set out in Table 4 below. The findings are presented in terms of these four themes as well as relevant subthemes and categories.

| Health information seeking
Participants in this study were managing a wide range of CVD risk factors as well as managing chronic illness, and they varied in the detail of information they wished to know about their conditions. Some were very proactive in seeking out detailed information from different sources while others preferred to view their doctor as the sole point of access to health information: information with an appraisal process using multiple sites, making comparisons and bringing information back to the GP for further clarification. However, it was also viewed as a useful way to supplement understanding of information received from the doctor: You can go to a doctor… but to be able to go home then, Google it up, print it off, read it and study it, and then go back with some of the formative questions, is good.
In terms of appraising health information, participants who regularly used the Internet to access health information were able to differentiate between sites which are generally deemed to be trustworthy (medical sites) and other sites. Participants also stated that they preferred using medical sites over those which are predominantly based on patient experiences (such as patient forums).

| Perceptions of control
Participants described feelings of control and confidence in relation to managing their health, which could impact on how proactive or passive they were in activities related to using health literacy capacities.
Perceptions of control were linked to how individuals engaged with health information/health services. For some, being in control was important and is related to personal responsibility for health: Find out more about diabetes really and heart disease because it's something that's big in our family…so that I'll know to take care of myself and my family.

(P1FL)
A number of participants described situations where they experienced long delays in getting a diagnosis despite their on-going health concerns and continued interactions with their doctor. These experiences were linked to feeling quite powerless in relation to trying to manage health concerns when there was no clear diagnosis:

I kind of blame myself because for ten years I thought I was complaining of a kidney infection and when it turned out
to be ovarian problems, that was a bit of a concern that it hadn't been picked up. (P8FL)

| Structural factors that impact use of health literacy capacities
In discussing their health management experiences, participants identified a number of factors at the health-care system and broader community and environmental levels that influenced their capacities to access, understand, appraise and effectively utilize health information.

| Affordability
Financial considerations were perceived as barriers or facilitators to being able to engage with health activities. Some participants (all with higher levels of health literacy) described themselves as "fortunate enough" and "privileged" to be able to afford All the things that promote wellbeing…they all cost money…you have to be able to afford to do it, you know. (P19FA)

| Qualities of the HCP
The relationship with the HCP (mainly GP) and the quality of that relationship emerged as central in using health literacy skills.
Characteristics of the HCP relationship could act as a barrier or facilitator to information seeking and appraisal as well as to the overall interaction and communication experiences of participants. Trust, being listened to, having a good rapport and feeling comfortable and cared for were all important factors identified:

It's so important for somebody to listen to you and for
them to understand what the problem is and how the patient is coping.
The perception of caring is clearly important, and this is particularly relevant for those who are managing serious illness: When I was told that my heart function was so low I got so scared and Dr X phoned me several times…to see how I was, I'd never had calls from a cardiologist to know how I was, which was lovely. (PR21FL)

| Accessing and appraising information with the HCP
Many participants were involved in seeking and obtaining health information such as looking up specific information, asking questions of the doctor, having a strategy to keep information and putting the information to use. Many of these activities are also an important component of the appraisal process whereby the HCP is directly involved.
Participants varied in their level of engagement with active information seeking. For some, information was obtained by attending talks (for example, through the diabetes clinic) and noting relevant information as it came up. Others were much more proactive in seeking out different sources of information, engaging and using the information in consultation with the GP. A common part of the appraisal process was bringing information found elsewhere into the consultation, and some participants had experienced negative reactions to this:

| DISCUSSION
The overall aim of this study was to explore the use of health literacy in creating positive patient-provider relationships. 28  The issue of empowerment is important to consider and is understood here to refer to psychological empowerment that includes the constructs of personal control, a proactive approach to life and a critical understanding of the socio-political environment. 31 It entails being able and motivated to bring about changes not only in personal behaviour but also in the social situations and the organisations that influence one's lives. 32 The exact nature of the relationship between health literacy and empowerment continues to be contested in the literature. However, there is a growing consensus that while health literacy does not automatically lead to empowerment, it may well be understood as an instrument in the process. 33 Both concepts are regarded as distinct but closely connected through knowledge, skills and power dimensions. 33 can affect key decision-making outcomes, 38 and the use of formal decision aids may be useful. 39,40 Without adequate support in this process, some individuals may have adverse health outcomes, for example, if they cease taking medications associated with particular side-effects.

| Strengths and limitations of the study:
One strength of this study is that it combines data on health literacy levels with the qualitative experiences of individuals. Individuals with limited health literacy are well represented in the study. The participants in the study were sampled from those at the beginning stages of a community-based CVD risk reduction programme and so differs from the health-care-based patient samples used in other studies.
The study design could have been strengthened using a stratified purposeful sample which would allow for a clear differentiation between groups with high/low health literacy. However, this was not possible due to the nature of recruitment (rolling intake) into the community-based programme. Ultimately, study participation relied on the voluntary participation of individuals and so it is possible that those individuals who were most engaged with health issues were more likely to take part.

| CONCLUSION
Participants in this study, with varied levels of health literacy, are striving "to make informed choices, reduce health risks and improve quality of life". 41 Individuals interacting with HCPs all have different levels of health literacy which in turn can impact on how health information is accessed, understood, appraised and applied. HCPs need to have an increased awareness and understanding of these contexts. There were no clear patterns regarding health literacy levels and experiences discerned in this study in relation to either education or social class levels. However, what does seem to be most important are contextual factors such as the quality of communication with the health-care provider, perceptions of control, attitudes to family medical history, navigating structural barriers and being supported in managing treatment and medication side-effects.
Capacity at the critical level of health literacy entails moving from an understanding of basic health information to being able to contextualize it and to use this to gain control and/or change the determinants of a particular outcome. Further research involving follow-up with participants as part of the larger on-going longitudinal study will offer increased insights into barriers and facilitators to developments in health literacy over time.