Health literacy, social support, and health: a research agenda

Amid increased concerns about the adverse consequences of low health literacy, it remains unclear how health literacy affects health status and health service utilization. Moreover, studies have shown significant variation in individual adaptation to health literacy problems. This article proposes research hypotheses to address two questions: (1) What are the causal pathways or intermediate steps that link low health literacy to poor health status and high utilization of expensive services such as hospitalization and emergency care? (2) What impact does social support have on the relationships between health literacy and health service utilization? Empirical studies of health literacy are reviewed to indicate the limitations of current literature and to highlight the importance of the proposed research agenda. In particular, we note the individualistic premise of current literature in which individuals are treated as isolated and passive actors. Thus, low health literacy is considered simply as an individual trait independent of support and resources in an individual's social environment. To remedy this, research needs to take into account social support that people can draw on when problems arise due to their health literacy limitations. Examination of the proposed agenda will make two main contributions. First, we will gain a better understanding of the causal effects of health literacy and identify missing links in the delivery of care for patients with low health literacy. Second, if social support buffers the adverse effects of low health literacy, more effective interventions can be designed to address differences in individuals' social support system in addition to individual differences in reading and comprehension. More targeted and more cost-efficient efforts could also be taken to identify and reach those who not only have low health literacy but also lack the resources and support to bridge the unmet literacy demands of their health conditions.     

Social support and families of children with cancer: an integrative review

This study aimed to search available evidences in literature about social support to families of children with cancer. An integrative review was elaborated and the articles were searched in PUBMED, WEB of SCIENCE, CINAHL, PsycINFO and LILACS, using the key words: social support, cancer, child and family, between 1996 and 2006. Fifteen articles were selected and the analysis of these publications allowed for the identification of three themes: social support and the trajectory of cancer, social support to healthy siblings and social support to fathers and mothers of children with cancer. Data indicated a lack of consensus among researchers about the use of the term social support and that there is a need for greater methodological rigor in the conduction of these studies. Acknowledging the clients' support needs is important to plan nursing care and guide research development, whose results can be used in practice.     

Defining social support in context: a necessary step in improving research, intervention, and practice

A substantial body of work on the concept of social support has resulted in many definitions, but none have been accepted as definitive. The lack of consensus about the definition of social support has resulted in a lack of consistency and comparability among studies. More important, the validity of any study attempting to measure or influence social support is undermined by the use of generic definitions, which lack contextual sensitivity. In this article concept analysis is used to evaluate definitions of social support to ascertain their utility for research. The authors argue that a contextualized approach to the definition of social support is necessary to improve clarity in research, and results in interventions or practices that are useful. They also assert that the development of a contextualized definition of social support requires qualitative methods to explore the meaning of social support with groups of people for whom intervention research is ultimately intended.     

Social capital: a strategy for enhancing health?

The idea of social capital is currently being discussed as a source of support for health, though it is often argued that the concept should not be used in an attempt to evolve neutral policy strategies but underlines the need for moral and political debate in health policy. This article, first, supports this argument by indicating the complex and culturally diverse nature of social capital. Its components react with their social contexts to produce a range of variants which differ from each other along several dimensions. Social solidarity and support involve different conventions in different places, with results which need appraisal before they can be supported. The article explores these issues by drawing on ethnographic material illustrating aspects of social relatedness in a variety of settings. Secondly, writers who treat social capital as invariably positive tend to associate it with conditions in the neo-liberal societies of late capitalism, even though they also see it as threatened there. Again examining social contexts, the article locates the reasons for this paradox in the cultures and structures of the societies concerned. Large-scale institutions in the West-including both those required to implement public health measures and those in which the majority of people work-are organised via neo-liberal processes which are not all conducive to the types of social relatedness which the social capital debate seeks to explore. In particular, significant aspects of social trust are difficult to support in neo-liberal organisations. The assumption that social capital can be promoted via social engineering which relies upon these very institutions is thus questionable. This, together with more positive aspects of the debate, draws attention to the need for further research on social relatedness if it is to be supported by public policy.     

A scoping review of personalisation in the UK: approaches to social work and people with learning disabilities

There have been rapid developments in personalisation of health and social care in the UK over the past 5 years to develop a more flexible model of provision based upon greater choice and control for service users. This has been important for people with learning disabilities who are often dependent on others such as social workers to support their autonomy and independence. This article discusses a study carried out to explore the impact of personalisation on people with learning disabilities and the role of social workers to support this. A scoping review of the UK literature from 1996 to 2011 was conducted. It was found that there has not been a significant amount of empirical research in this area. Some studies, such as reports by InControl, have suggested that when implemented well, personalisation can have a positive impact on the lives of people with learning disabilities. Other literature highlighted the limitations and critiques of personalisation. Without the right support to manage budgets and autonomy, people with learning disabilities could be left vulnerable. In respect of the social workers, the finding of the review was that there was a lack of guidance on how to implement personalisation and a perceived threat to their traditional practice role, resulting in barriers to implementation. Although the literature emphasises the need for choice, control and autonomy in personalisation, the conclusion of this study is that more research needs to be carried out into how professional roles fit into and can support this process.     

Reconsidering the Effects of Poverty and Social Support on Health: A 5-Year Longitudinal Test of the Stress-Buffering Hypothesis

Prior research in the general population has found that social support can buffer the adverse effects of stressors on health. However, both stressors and social support may be qualitatively different for those living in urban poverty. We examined the effects of social support and poverty-specific stressors on self-rated health. We used data from the Welfare Client Longitudinal Survey (WCLS), a 5-year longitudinal study of 718 public aid recipients. We measured received social support and “net social support,” defined as the difference between support received and that given to others. We used restricted cubic splines to model the stress-buffering effects of social support on self-rated health as a function of stressful life events and neighborhood disorder. Increased exposure to stressors was associated with poorer self-rated health. Evidence of stress buffering was confined to those with the heaviest exposure to stressors, and its effects decreased across increasing levels of social support. Analyses using net social support had generally more modest effects than those using received social support. Social support does not buffer the effects of stressors on health uniformly for individuals living in conditions of urban poverty. Researchers and policymakers should be cautious in overestimating the beneficial effects that social support may have on health for marginalized populations.     

Social support and compliance: a selective review and critique of treatment integrity and outcome measurement

The paper presents a selective review and critique of the literature on social support as a factor in the enhancement of patient compliance with medical regimens. The review highlights several studies that measure the correlation between social support and compliance. The manner in which studies operationalize social support is discussed. Several research recommendations suggest ways social support could be studied as a clear and strong independent variable, such as utilizing measures of compliance with the social support manipulation and considering several different variates of social support. Greater attention to methods for measuring compliance is also suggested.     

Experiences of women with breast cancer: exchanging social support over the CHESS computer network

Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.     

Understanding Social Support Burden Among Family Caregivers

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered.     

Proposing modesty for informed consent

The extension of informed consent into social science research has met with considerable opposition. The history and concept of informed consent, however, is based on a substantive ethical notion of the research relationship as informed and voluntary that is appropriate for social science research relationships. Yet social science research might sometimes be different from health research in ways that justify a different approach to informed consent and research relationships. Social science research tends to have a lower magnitude of risk, usually does not need to disrupt the therapeutic assumption common in health research contexts or when researchers are health professionals, and recruitment is sometimes incremental and reflects a building of trust and development of the research participant's role. These differences may sometimes justify novel approaches to the research relationship and require case-by-case evaluation to determine their relevance to establishing the informed and voluntary nature of the relationship through the use of informed consent procedures. Ultimately, respect for research participants requires social research into practices that can support or replace informed consent. The institutional role of informed consent and the goal of informed and voluntary research participation serve modest but important roles in health and social research. Their proper role in health and social research requires flexibility and experimentation, but does not justify abdication of informed consent or the notion of informed and voluntary participation.