‘Distributed health literacy’: longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long‐term health condition

Abstract

Background

The role of one's social network in the process of becoming health literate is not well understood. We aim to explain the ‘distributed’ nature of health literacy and how people living with a long‐term condition draw on their social network for support with health literacy‐related tasks such as managing their condition, interacting with health professionals and making decisions about their health.

Design

This paper reports a longitudinal qualitative interview and observation study of the development and practice of health literacy in people with long‐term health conditions, living in South Wales, UK. Participants were recruited from health education groups (n = 14) and community education venues (n = 4). The 44 interview transcripts were analysed using the ‘Framework’ approach.

Results

Health literacy was distributed through family and social networks, and participants often drew on the health literacy skills of others to seek, understand and use health information. Those who passed on their health literacy skills acted as health literacy mediators and supported participants in becoming more health literate about their condition. The distribution of health literacy supported participants to manage their health, become more active in health‐care decision‐making processes, communicate with health professionals and come to terms with living with a long‐term condition. Participants accessed health literacy mediators through personal and community networks.

Conclusion

Distributed health literacy is a potential resource for managing one's health, communicating with health professionals and making health decisions.

Background

The concept of health literacy has evolved from a basic description of the ability to perform health‐related tasks that require reading and numerical skills,1 to a more complex description covering tasks such as information‐seeking, decision‐making, problem‐solving, critical thinking, and a range of cognitive, personal and social skills that individuals need to function effectively within the health system.2 A range of health literacy frameworks have been developed to explain the meaning of health literacy, its relationship to health outcomes, and the social, environmental and cultural influences on health literacy.3, 4, 5, 6 However, most of these are based on extensive reviews of the literature and are yet to be empirically tested.

Most health literacy research in the context of long‐term health conditions explores the relationship between measures of health literacy and knowledge of long‐term conditions and clinical measures of self‐care.7, 8 Poor health literacy has been associated with lower knowledge and poorer health status and clinical outcomes.9 However, some studies have shown that despite poor scores on health literacy and knowledge, some participants still successfully keep conditions such as diabetes under control.9, 10, 11 Such individuals may be ‘complying’ with recommendations and managing their conditions without genuinely understanding them or it may be that significant others are contributing to the management of the condition.

The health literacy pathway model

We previously explored the development and practice of health literacy in people with a long‐term health condition and introduced the health literacy pathway model (see Fig. 1) to describe how participants develop their health literacy through five stages and identified facilitators and barriers in addition to personal outcomes (e.g. building their knowledge and skills, communicating with health‐care professionals, participating in shared decision making).12

Figure 1.

The health literacy pathway model.

The role of others in the management of long‐term conditions has previously not been well explained within a health literacy context. In our paper, on the health literacy pathway model,12 we highlighted how the support of friends, family, health professionals and health educators acted as facilitators to the development of health literacy. We suggest that these people support health literacy by helping with health literacy‐related tasks and facilitating progress through the stages in the model.

The notion of health literacy as a shared capacity is not well understood. However, academics in medical decision‐making and literacy studies have explained both decision‐making and literacy abilities as beyond an individual capacity and consider the input of others.13

Shared decision making – distributed decision making

Shared decision making in health‐care settings has been mostly considered as a dyadic encounter between a patient and a health professional.14 Rapley introduced a new perspective on shared decision making that considers the role of an individual's social network in the decision‐making process.13 Rapley argued that decision making is not simply a ‘solo cognitive activity’ but an ‘ongoing event’ that develops over a number of encounters with others. Rapley (p.8) suggests that decisions are distributed ‘over’ people and ‘emerge, transform and solidify through multiple interactions with multiple others, significant or otherwise, over a period of time’.13

Literacy studies – distributed literacy

The term ‘distributed literacy’ describes how literacy is dispersed throughout a group.15 According to Wagner et al.,15 several individuals may each possess only some aspects of literacy, and by combining their efforts, they may function as more fully literate individuals. Kouzlin16 suggests a number of individuals may contribute to different aspects of one literacy action.

Baynham17 refers to ‘literacy mediators’ describing them as ‘a person who makes his or her literacy skills available to others, on a formal or informal basis, for them to accomplish specific literacy purposes’. Papen18 (p27) suggests literacy mediators may help extend and enhance an individual's health literacy, concluding that ‘health literacy is not solely an individual skill, but it is a distributed resource available within an individual's social entourage’. Literacy mediators in a health‐care context help others to understand medical information and may read or write information for them to include in interactions with health‐care professionals.18

Social support and health literacy

Social support is one of a number of broader factors that influence health literacy, leading to participation in health‐care processes and subsequently to altered health outcomes.4, 5, 19 Lee et al.20 (p1314) explain the relationship between health literacy and social support, suggesting that ‘the positive resources and support in individuals' social networks can improve their ability to acquire and understand medical information and to negotiate the healthcare system.’

Lee et al.20 refer to two types of social support (structural and functional) that interact with health literacy. Structural social support relates to an individual's location within their social structure, for example their participation in community organizations, maintenance of social contacts and immersion in social networks. Structural support may buffer the impact of low health literacy through the distribution of information within an individual's close social network. Friends and family may assume responsibility for them by acting as a surrogate decision maker or seeking health care on their behalf.20

Functional social support relates to communication and support that serves informational, emotional and tangible needs. It interacts with health literacy in determining an individual's health knowledge, health behaviour, health status and use of health services.20

Social networks, health literacy and long‐term conditions

Rogers et al.21 describe the social networks of people with long‐term health conditions as ‘systems of support’: (i) health professionals, (ii) non‐health professionals (with health relevant functions), (iii) voluntary and community groups (with health relevant functions), and (iv) personal communities (family, friends, neighbours, colleagues, etc.). Rogers et al. suggest that a research focus on social networks helps explore when and where self‐care support may be most appropriately targeted and also identify the hidden roles played by people within the personal networks of others with long‐term conditions.

Research on chronic illness management has shown that social support and social networks influence recovery from, and adaptation to, chronic disease such as coronary artery disease, but that they can also reduce the risk of myocardial infarction itself.22

A recent qualitative study of health literacy amongst people with arthritis explains health literacy as both a personal resource and one which is distributed amongst social networks. Those arthritis patients with poorer health literacy acted as ‘recipients’ of information and knowledge from their social networks, whilst those with better health literacy acted as ‘distributors’ of knowledge and information within their social networks.23

Aims

As we have described the health literacy pathway model elsewhere,12 in this paper we aim to examine the ‘distributed’ nature of health literacy and explore how participants with a range of long‐term conditions draw on people within their social network(s) for support with health literacy‐related tasks. We focus mainly on friends and family members, and there will be some reference to health‐focused community and online groups.

Method

Research design

Our focus was on participants' experiences, and we used a longitudinal qualitative methodology (including serial interviews) to investigate how they practised and developed health literacy in managing their condition. A longitudinal qualitative approach was useful to develop an ongoing relationship with a participant to explore sensitive topics and also to capture a range of experiences over a time period.24

Sample

We recruited a purposive sample of 18 participants (aged 22–76) each with a long‐term health condition. Four participants attended a nurse‐led structured diabetes education programme (X‐PERT Diabetes Programme), five attended a nurse‐led cardiac rehabilitation programme, five attended a generic lay‐led self‐management programme (the Expert Patient Programme). Participants in the Expert Patient Programme comprised two who had a mental illness, one who had a child with multiple chronic conditions, one with a rare condition similar to multiple sclerosis and another with epilepsy. We also included a fourth group (the comparison group) who did not attend any programme. One person in the comparison group had a mental illness, one was recovering from heart surgery, one had asthma and another experienced chronic back pain (see Appendix S1 for participant characteristics). The purpose of using a comparison group was to examine how participants who did not attend education groups developed health literacy over time.

Participants in patient education groups were recruited with the assistance of the programme coordinators. Participants in the comparison group were recruited from a community education centre, one person was a tutor and the remaining three were undertaking evening classes.

The Research Ethics Committee for Wales granted ethical approval for the study (reference 08/MRE09/54).

Data collection

Serial interviews investigated the development of health literacy to identify changes in attitudes, knowledge and experiences over time. Participants in the patient education groups were interviewed at three time points to capture changes in their understanding of their condition, self‐management skills, health‐care utilization and health communication experiences over time (at the start of their programme, 2 weeks after completing the programme and approximately 12 weeks later). Participants in the comparison group were interviewed twice (initial time point and 20 weeks later). The interview questions sought to identify which health literacy skills participants used in managing their condition and communicating with health professionals and in what situations participants were supported by the health literacy, knowledge or skills of others (e.g. in searching for online information, making informed decisions and communicating with health professionals).

Data analysis

We used a framework analysis to allow the exploration of pre‐identified issues and also new themes.25 We analysed data, looking for evidence of health literacy skills used in managing a long‐term condition, including from others, and how health literacy may have developed over time. The following five stages of analysis were used:

Familiarization – gaining an overview of the literature, research objectives and data. Themes were coded using the NVivo8 qualitative software programme. All the coding was completed by ME, and MD and FW double coded 40% of the data for reliability.

Identifying a thematic framework – this was constructed from the codes developed in the familiarization stage. Our thematic framework was influenced by theoretical perspectives of health literacy as a generative concept that can be developed over the life span26, 27 and health literacy as an ‘asset’.6 The construction of the thematic framework was agreed by all authors.

Indexing – systematic coding of all interview transcripts using the thematic framework.

Charting – creating a set of thematic charts for each theme using a matrix format.

Mapping and interpretation – reviewing the charted data and analytical notes, comparing and contrasting participants' accounts, identifying patterns and connections in the data.

Results

Based on familiarization with the data and prior engagement with the literature on health literacy, eight overarching themes were included in our theoretical framework (see Table 1).

Table 1.

Thematic framework

Themes	Subthemes	Categories
1. Health knowledge	Knowledge of health in general and own health concerns	Knowledge of science and health Knowledge of condition Knowledge of health service Knowledge of patients' rights
2. Self‐management skills	Managing medication Self‐monitoring Managing a diet	Organizing medications and managing a medication regime (self‐injecting, taking pills) Self‐monitoring blood sugar/anticoagulation Managing diabetes with diet
3. Active information seeking and use	Engaging with written materials Accessing online information Using social media Engaging with research Critical appraisal of information and considering it within context	Reading medical reference books, dictionaries, leaflets, newspaper reports Health‐related websites, health organizations Posting messages on discussion boards, Web chat with other patients, using video‐sharing websites to view procedures Reading research papers Assessing the reliability and quality of information and the source of information, assessing relevance of the information in context of own concerns
4. Actively communicating with health professionals	Preparation Exchanging information Expressing needs and concerns Conveying information Managing communication	Keeping a record of symptoms, preparing questions to ask in consultations Bringing information to a consultation, discussing results, medications Asking to change a medication, talking about problems, communicating preferences, asking for a referral to another service, asking for monitoring devices, asking to see results Reiterating health information given by one health professional to another Managing communication with multiple health professionals
5. Seeking and negotiating treatment options	Seeking treatment options Negotiating medication or treatment	Seeking alternative treatment options online Asking doctor to try a new medication or alternative treatment method
6. Decision making	Desire for involvement Opportunities for involvement	Making informed decisions about treatment preferences Taking part in shared decision making
7. Influences on health literacy	Negative influences (personal and professional barriers) Positive influences (personal and professional motivators, facilitators)	Patients: poor acceptance, compliance, reliance on health professionals for information, emotional barriers (shock fear, anxiety), avoidance of information Health professionals: poor communication styles, conflicting information Patients: manage emotions (reducing fear), make sense of symptoms Friends and family: distributed health literacy skills Health professionals: support information seeking, pharmacy support with understanding of medications, nurse support with self‐management, access to services and mediate communications with doctors
8. Health literacy outcomes	Develop knowledge, skills, understanding and coping Active involvement in consultations

We drew on these themes to develop the health literacy pathway model and explain how some participants progressed from developing their health knowledge to becoming active communicators and decision makers in their health care. We were also able to draw on the themes to identify the role of others in the development and practice of health literacy.

Distributed health literacy

We found that accessing, understanding, evaluating and using health information was often not an individual task. Health literacy skills were dispersed amongst participants' social networks (including friends, family, colleagues and members of community health groups). We developed the category of ‘distributed health literacy’ from our thematic framework to describe the ways in which participants talked about how they often drew on the health literacy abilities, skills and practices of others as a resource to help them seek, understand and use health information to help manage their own health and make informed choices. Knowledge was shared with friends and family, who used their health literacy skills to help access information for the participant and to interpret and analyse that information. Friends and family communicated with health professionals on behalf of, and in collaboration with participants. Participants also received support in seeking and using information about treatment options or to make behaviour and lifestyle changes. We refer to those who passed on their health literacy skills as health literacy mediators, supporting participants in becoming more health literate. Not all participants received support from their social network or had people in their social network that acted as health literacy mediators. Table 2 identifies individuals or groups who acted as health literacy mediators for some of the participants in this study and briefly outlines their roles in supporting health literacy and self‐management. The table shows that it is mostly close family members who act as health literacy mediators but friends, work colleagues also contribute their knowledge and skills. Members of support groups also mediate health literacy skills but this level of support seems to be mostly about providing information informational.

Table 2.

Identifying social network members as health literacy mediators

Participant	Social network member/health literacy mediator	Health literacy practice	Shared health literacy practice
2XP	Husband	Seeks and evaluates diabetes information online	Discusses and shares online information
	Husband	Develops understanding of diabetes management	Discusses information and supports self‐management decisions
	Husband	Seeks information about medication from internet and friends	Supports decision making about medication
	Friends	Shares knowledge, understanding and experience of medication	Influences discussion and supports decision making about treatment
	Diabetes UK Group Members	Develop knowledge and understanding of diabetes management	Share knowledge and experiences of managing diabetes
3XP	Husband	Seeks and evaluates online information	Discusses information and supports self‐management decisions
5EP	Brother and Mother	Seek online information to develop knowledge of condition and self‐management	Discuss information and support self‐management decisions
	Friend	Attends consultations and communicates with health professionals	Shares knowledge of the health‐care system and supports communication with health professionals
	Partner	Attends consultations	Supports communication with health professionals
	Exwork colleague	Attends consultations	Supports communication with health professionals
1CR	Brother/Partner	Communicate with cardiologist	Support with understanding of surgery
2CR	Daughter	Seeks online information, discusses with consultant	Supports in communication with health professionals
	Wife	Organizes medication regime	Supports in managing medication
3CR	Daughter	Seeks online information about condition and surgical options	Shares and discusses surgery and supports decision making
	Friends	Share knowledge, understanding and experience of surgery	Discuss options and influence decision making
4CR	Parents	Take written notes in consultation	Support in communication with health professionals
	Online Support Group	Discuss condition and share experiences	Construct an understanding of condition
2C	Husband	Understands condition and manages medication	Supports in managing medication
4C	Work Colleague	Provides advice on managing medication	Supports in managing medication and taking it safely

Ways in which health literacy was distributed

A closer analysis of distributed health literacy enabled us to identify four broad areas where health literacy was utilized and a range of health literacy skills and practices that were distributed around an individual by members of their social network.12

Shared knowledge and understanding

Developing health knowledge was the first stage in the health literacy pathway model and provided a foundation on which to develop health literacy. However, we found that participants' knowledge and understanding of their condition and how to manage it were not exclusive to them. Friends, relatives and colleagues supported them in developing their health literacy. Some had access to advice and information from other contacts in health‐focused community groups or online support groups who had lay or expert knowledge of their condition. For example, participant 2XP attended regular Diabetes UK meetings and fundraising events in her community. She had access to information and advice from other Diabetes UK members and expert advice from guest speakers who helped her make decisions about how to manage her diabetes.

It's good to talk to other people and you know see how they treat their diabetes and if they have a problem that you are having maybe they are handling it better and you could learn something from just talking to somebody.

(Participant 2XP, interview 2)

Her husband accompanied her at Diabetes UK meetings and the X‐PERT Diabetes Programme. Thus, they developed a shared knowledge of diabetes.

Participant 4CR used a website (GUCH – Grown Up Congenital Heart Patients' Association) as a resource to communicate with other patients to ask questions and learn from their experiences.

Having the GUCH online and being able to say…honestly being able to just put a question out there and say ‘when I breathe in why does it sound like my chest is popping?’

(Participant 4CR, interview 2)

She also shared pictures of her scars with others on the website and made comparisons between theirs and her own to help her understand her progress.

Family members sometimes sought and shared information to help understand their relative's condition and provide support. For example, participant 5EP lived alone and had particular difficulties that meant she needed support at home. Her family engaged with health information to find ways they could support her. Thus, knowledge of her condition, skills in researching information and care responsibilities were distributed amongst the family.

He (brother) phoned my mum the other day, they said in some cases it can take up to 4 years to recover and in terms of how people have coped with that um and he was trying to explain to my mum it could be a while you know, it's not going to happen overnight. So I know my brother has shared with her from looking at things on the internet.

(Participant 5EP, interview 2)

Sometimes knowledge and self‐management skills were deferred to family members. For example, participant 2CR had a limited understanding of his medication regime and deferred responsibility of this to his wife who managed his medications for him. Thus, he drew on her health literacy skills to manage his medication regime.

Accessing and evaluating information

Accessing and evaluating information is a core health literacy skill and is reflected in stage two of the health literacy pathway model. Health literacy skills associated with seeking and evaluating online information were shared with family members. Some participants were not computer literate or experienced in searching for online health information. Some participants relied on the health literacy skills of friends and family to help them access and evaluate information, try to understand more about their condition, communicate with health professionals and make decisions about self‐management and treatment options. Participant 2XP did not have skills in using the internet; her husband had shared her knowledge of diabetes and searched for relevant information and printed it for her to read. Therefore, they evaluated and assimilated information together to build a shared understanding. Participant 3XP had skills in searching for online information, but she wanted her husband to share her understanding of her condition and encouraged him to seek information for her so that she could benefit from his analytical skills. Thus, both their health literacy skills contributed to their shared knowledge of diabetes.

If I want to know something I will ask him to look it up on the internet for me, simply to get him to be aware you know, and it's not that I'm not capable of finding things for myself but if I ask him to do it he will look into it and he's very analytical.

(Participant 3XP, interview 1)

Support with communication

Communicating with health professionals is another broad health literacy skill and is reflected in stages three, four and five of the health literacy pathway model. We found that participants also drew on the support of friends and family members for this aspect of health literacy. Family members or friends were used in listening to consultations, acting as note‐takers and also providing some input into consultations. In some instances, family members communicated with health professionals on their behalf at a time when they were in hospital, too ill to communicate or in an emotional state that made it difficult for them to assimilate information. Thus, they may have compensated for participants who could temporarily not use their own communicative health literacy skills. For example, during discussions on the decision to have an angiogram, participant 1CR was shocked and found it difficult to process the information. She assimilated the information well after the event, but she relied on the support of her family to communicate with health professionals on her behalf and then relay the information to her.

Participants sometimes sought the support of friends and family in processing, understanding and evaluating the information that was provided in health‐care consultations.

I've got a friend who has an NHS background who sits there with me because there are certain things she's questioning as well, so yeah, and I think also for my own peace of mind just to process everything as well.

(Participant 5EP, interview 2)

I don't do it myself but whoever is with me will write things down. And so we can remember what they've actually said because I never remember and when you are there and they are saying really scary things you don't remember.

(Participant 4CR, interview 1)

Supporting decision making

In our pathway model, the last two stages are focused on producing options or choices (stage 4) and participating in shared and informed decision making (stage 5). Our interview data provided evidence that friends and family members were involved in this aspect of health literacy. For example, participant 3CR was given a choice on whether to have surgery on her damaged carotid artery. Her daughter accessed online information to support her mother in considering her options and making a decision whether to go ahead with the surgery. Hence, her daughter's health literacy skills contributed to the informed decision‐making process.

My daughter actually went on the internet and found out more about it and as well as anybody else she was saying ‘well it says on the internet the benefits outweigh the risks’. Well she had to do it because I wouldn't know how.

(Participant 3CR, interview 3)

The husband of participant 2XP supported her in seeking alternative medications both online and through discussions with friends. They shared their information with their practice nurse and GP before making the decision to try out the medication. Hence, the decision to seek and ask for a change in medication was supported by the health literacy skills of her and her husband. This enabled them to coproduce their own treatment options (stage 4 of the HL pathway model) and achieve a shared decision, influenced by a number of people contributing their information and experience.

He met somebody who tried it (Byetta) and said it was wonderful but I think it affects you know individuals differently. It obviously worked for this woman but I think he was more keen for me to try it than I was. But I thought I would give it a try, he (husband) was keen on it and I almost had to sort of um beg him(GP) to give it to me because he wasn't happy, he didn't particularly like the drug.

(Participant 2XP, interview 2)

To summarize, participants capitalized on the health literacy of members of their social networks (mostly family members: partners, parents, adult children). However, some participants also attended health‐focused community groups (Diabetes UK) or online support groups (GUCH) which acted as health literacy mediators.

The role of social support on the Health Literacy Pathway

We mapped the concept of distributed health literacy on to the health literacy pathway model to identify intervention points at which people in a participant's social network (the mediators) influence that individual's progression through the stages (see Fig. 2). The model now reflects shared and supported knowledge, skills, actions, production of options and decision making. At intervention point one, new knowledge and skills are developed (e.g. knowledge of condition and self‐management strategies [4C, 2XP, 5EP]). At intervention point, two knowledge and skills are put into practice to support and motivate the participant to become more active in consultations (e.g. skills in searching for, appraising information and applying it to oneself; preparing questions for discussion in health‐care consultations [2XP, 3XP]). At intervention point three, participants are supported to aid thinking about different options or new options that may have been presented to them (e.g. researching potential treatment options online [2XP]), and at intervention point four, participants are supported in their decision making (e.g. family and friends have input into decision [3CR,2XP]).

Figure 2.

The supported health literacy pathway.

Some participants had more structural social support than others and thus had greater access to health literacy mediators through their social and professional networks. Some of these were family members who were health professionals but in other cases, non‐health professional family members appeared to be good health literacy mediators. Participants who had access to more varied sources of distributed health literacy (e.g. participants 4CR and 2XP) seemed to have a good understanding of their condition and treatment options. Both were active in seeking treatment options, discussed their options in consultations and were actively involved in decision making with health professionals.

Differences in distributed health literacy in those who attended patient education groups and those who did not

Participants who attended patient education classes also benefited from learning about their health condition, how to access services and communicate with health professionals through engaging in conversations with other group attendees and informal conversations with class tutors. Therefore, there was potential for health literacy to be distributed through peer support within the classes. We observed that in the diabetes education and the cardiac rehabilitation programmes, there was more opportunity for distributed health literacy. Participants in the comparison group developed their knowledge and understanding of how to manage their condition mostly on their own or with the support of health professionals (see Edwards et al.12 date for further findings on group differences).

Discussion

Principal findings

We have shown how health literacy skills can be distributed through one's social network and thus can support individuals in managing their condition, communicating with health professionals and making decisions about their health care. Our findings can be related to the self‐care support opportunities provided by personal communities and voluntary and community groups as described by Rogers et al.21 However, we focus more on health literacy as component of self‐care support. We use the term ‘distributed health literacy’ as an adaptation of Wagner et al.'s term ‘distributed literacy’ to explain the health literacy abilities, skills and practices of others that contribute to an individual's level of health literacy.15 Our findings support Papen's proposition that health literacy is a distributed resource within an individual's social network.18 We suggest that the concept of distributed health literacy may be similar to Rapley's idea of distributed decision making which shifts the focus from an individual cognitive activity to an ongoing event that involves interactions with others.13 We recognize health literacy as a ‘personal asset’ that is found in individuals but can also now be seen throughout groups of people (i.e. in families, patient education groups, community groups and support groups). We describe individuals who share their health literacy skills as ‘health literacy mediators’. This definition extends Papen's18 definition of ‘literacy mediators’ to account for wider explanations of health literacy that extend beyond reading and writing skills.2, 27

This paper extends the existing discussion of the role of social support in developing health literacy in low‐literacy groups,20 exploring these issues in the context of individuals with adequate or high health literacy skills, at least for some participants. We argue that the potential benefits of distributed health literacy may not be restricted to individuals with low health literacy, as even participants with high health literacy (for example, participants 4CR and 5EP) used the support of health literacy mediators within their social network. We suggest that people who have a good level of social support available within their social network may benefit from distributed health literacy. This may be as dependent on the availability of different sources of structural social support (e.g. access to health professionals, knowledgeable and experienced advisors, charity and advocacy services and self‐help groups) as on the specific capacities of the individual, although this requires further study and confirmation.

Strengths

Our study used in‐depth qualitative interviews to explore how participants used the support of their social network. The experiences and information needs of our participants changed over time; the longitudinal design of the study enabled us to explore these experiences alongside the changing contexts. We were able to examine how health literacy was developed over time and with the support of a range of people within their social network. There is a risk with serial interviews that participants may reflect on and change their health behaviours or be keen to offer ‘favourable responses’.28 However, using serial interviews and observing the 6‐week programmes enabled the researcher [ME] to gain good rapport with the participants, seeking to enable them to speak more openly about their experiences and support needs.

We included participants with a range of long‐term health conditions to reflect differences in information needs and the health literacy skills that may be required in different health contexts. Our study differs from other studies of health literacy that have focused on low‐literacy populations. We explored the concept of health literacy as an asset,6 showing how health literacy develops in a sample of people from a range of educational abilities and across different occupations.

Limitations

Our sample may have included participants with a good baseline of literacy skills because they had chosen to take part in patient education programmes. We were unable to report on limitations on distributed health literacy because of restricted social networks. None of our participants appeared to be socially isolated, and most had access to shared information within their patient education groups. Although participants had support in accessing information, expanding their knowledge and skills in managing their condition and communicating with health professionals, we were unable to explore evidence of any improvement in health conditions through the support of others. We did not assess the quality of the information and skills that were shared within social networks and did not identify negative effects on self‐management that might occur where the cumulative health literacy skills of a person's social network may be poor. Our sample size (18) was small and quite heterogeneous in terms of the health conditions. However, our study could be replicated using a larger sample in one particular condition or with larger groups of patients with other health conditions not included in our study (e.g. arthritis). Further research is needed to test both our pathway model and the construct of distributed health literacy.

Implications

Recent policies that promote patient involvement and patient choice require patients to have adequate health literacy.29, 30, 31, 32 In addition, these policies place individual‐level responsibilities on patients to manage their health and health care. Adequate health literacy is essential for patient involvement in their health care and is crucial for patients to make optimal choices.32 Thinking about health literacy and decision making as distributed through an individual's social network helps to understand how individuals are supported in engaging with health information, managing health and making health decisions. Future policy should take into account that the responsibility to become health literate, self‐manage one's health and participate in health‐care decisions over one's lifetime is sometimes shared within an individual's social network. One recommendation for policy development is to consider the role of families in providing information to people with long‐term conditions and to provide strategies for including families and key friends in health‐care discussions and decision‐making opportunities where this is desired by individual patients.

Having access to health literacy mediators in one's social network may improve health literacy skills or compensate for an individual's poor health literacy (as defined by current measurements). Given the relationship of poor health literacy with poorer health knowledge, self‐care and health outcomes,7, 8 health literacy mediators may also have some influence on health status and outcomes, although this requires evaluation.

Individuals who have restricted social networks, poor health literacy or little or no access to people in their social network who could act as health literacy mediators, may be the most disadvantaged in terms of developing the health literacy skills needed to manage their health. Therefore, health literacy measurements and programmes to develop health literacy should not only target individuals but could also be aimed at their family, friends and primary caregivers.

Future research

Future qualitative research would be useful to explore the role of health literacy mediators across different types of social networks. These may be cultural groups (e.g. age, geographical or ethnic minority groups), professional groups (e.g. health or non‐health professional employees), socially disadvantaged groups (e.g. homeless, unemployed, prison inmates) or educational groups (e.g. high school children, university students). We also need to understand the needs of those who have limited support for health literacy from their social network. These may include, for example, those who have weak social ties or are socially excluded (maybe due to family conflict, geographical location or disability or illness) or those who remain in a social structure where health literacy as a whole is poor and there is limited opportunity or motivation for learning about health. Furthermore, future research is needed to explore the negative effects of poor health literacy and poor quality information exchange within a person's social network on that individual's health literacy and what the consequences might be in terms of self‐management and health outcomes.

Our study was a qualitative exploratory study. We did not use indices of social networks or social network analysis in our study. Future quantitative research exploring the influences of social networks on health literacy and long‐term condition management should incorporate quantitative measures of health literacy, social networks and health behaviours and outcomes. Further research is also needed to develop measures of health literacy to assess the level of health literacy within a person's social network.

Conclusion

Becoming health literate in the context of managing a long‐term condition is an ongoing process that may include input from formal health education, communication with health professionals and one's social support network. Individuals benefit from the distribution of health literacy within their social network whatever their level of health literacy. Friends, family, colleagues and even acquaintances mediate the development and practice of health literacy by sharing knowledge, facilitating learning, contributing their own skills and supporting decision making.

Understanding how health literacy is distributed within social networks can help inform the nature and focus of future interventions to enhance health literacy in patients with a long‐term condition, enabling them to draw on the skills of others to help them manage and make decisions about their health. Bringing people together to develop health literacy within a community may be a useful way of distributing the responsibility and expectations that the current health system and policies impose on patients as individuals in managing their health.

Supporting information

Appendix S1. Participant characteristics.