Provision of cancer information as a “support for navigating the knowledge landscape”: Findings from a critical interpretive literature synthesis

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Abstract

Purpose of the research

Information is often seen as a crucial tool for the support of cancer patients, facilitating their involvement in care management and in decision-making. The importance of theory in guiding provision of cancer information has been widely accepted, but there is a growing need for critical reflection on the concepts underlying approaches to information provision. This paper presents findings from a critical review of literature related to information in cancer care.

Methods

Critical interpretive synthesis (CIS) was employed to review and synthesise published literature. 57 publications were selected in a multi-step systematic process. Their content was analysed and synthesised using established methodology consistent with primary qualitative research.

Key results

The synthesis identified and characterised a concept of cancer information provision as a “support for navigating the knowledge landscape”. This concept recognises the diverse, changing and relational nature of patients’ values, needs and preferences. It promotes a view of information provision as an ongoing and flexible process of navigating different resources, which in turn support the navigation of patients’ broader experiences of their health and care. This process recognises various levels of patient involvement with healthcare services, and ensures timely provision of selected and personally relevant information.

Conclusion

The concept of “support for navigating the knowledge landscape” offers a useful way of envisaging information services for people with cancer (and possibly also with other chronic illnesses), which would be responsive to patients’ needs and preferences.

Introduction

Information is often seen as a crucial tool for the support of cancer patients. Its roles are thought to include facilitating patients' involvement in care management and decision-making (Department of Health, 2000, Department of Health, 2004a, Department of Health, 2004b, Department of Health, 2004c; European Commission, 2007), as well as providing reassurance and enabling autonomy (Åsbring and Närvänen, 2004; Browall et al., 2004; Maliski et al., 2006). It is now clear, however, that patients' preferences and needs for information related to their illness and care are highly varied, changing and context-dependent (Kennedy and Lloyd-Williams, 2009; McCaughan and McKenna, 2007; Ormandy, 2011; Pollock et al., 2008). These needs and preferences for information may differ between groups of patients, between individuals within a group, and within individuals over time. Patients demonstrate considerable diversity in the amount, details, and content of information they desire (Booth et al., 2005; Browall et al., 2004; Feldman-Stewart et al., 2001; Feldman-Stewart et al., 2000), in their preferred patterns of information seeking and sources of information (Booth et al., 2005), perceived relevance of information (Maliski et al., 2006), general attitudes to and satisfaction with information (Pollock et al., 2008; Street, 2003), and broader orientations to communication (Street, 2003).

The role of healthcare professionals, and particularly nurses, in assessing and responding to patients' individual needs and preferences is now widely recognised (Booth et al., 2005; Browall et al., 2004; Fredette, 1990; Hardwick and Lawson, 1995; Harris, 1998). Many authors draw attention to a professional input in helping patients to articulate and refine their information needs and preferences, or supporting patients' interpretation of information in the context of their individual circumstances (Forrest et al., 2006; Katz et al., 2004; Nanton et al., 2009; Ormandy, 2011). While the importance of theory in guiding such supportive activities has been widely accepted (Padilla and Bulcavage, 1991; Rutten et al., 2005; Street, 2003), the assumptions behind particular models of information provision often remain unexplained. We suggest that critical reflection on the concepts and principles underlying approaches to information provision is therefore needed.

In this paper we draw on findings from a critical review of published literature related to information in cancer care, and conceptualise patient information as a “support for navigating the knowledge landscape” of illness and care. We argue that this conceptualisation offers a useful way of envisaging responsive approaches to provision of information to people with cancer.

Section snippets

Methods

We undertook a critical interpretive synthesis (CIS) (Dixon-Woods et al., 2006) of literature related to patient information for people with cancer. This methodology links elements of conventional systematic reviews with interpretive approaches to analysis and synthesis of data typical for primary qualitative research. Both systematic and iterative in its approach, CIS is particularly useful for critical scrutiny of complex bodies of literature with the aim of generating new concepts, as well

Results

In this paper we report on the key themes emerging from the literature synthesis which relate to the conceptualisation of provision of cancer information as a “support for navigating the knowledge landscape”. This concept has been used in the work of Daniels et al. (2007) which explored the use of the internet by cancer patients drawing directly on learning theory.

‘We feel that it is helpful here to invoke the notion of navigation of knowledge landscape. By this we mean that doctors [and other

Discussion and conclusions

In this paper, we have presented and discussed a concept of information provision which synthesises various themes emerging from the published literature related to patient information for people with cancer. Picturing provision of cancer information as a “support for navigating the knowledge landscape”, this concept draws attention to the close links between patient information and the crucial elements of patients' experiences of healthcare: their relationship with healthcare professionals,

Funding

This research was supported by a grant from the Big Lottery Fund. The views expressed here are the authors' and do not necessarily reflect those of the funding bodies or any other organisation.

Conflict of interest

None declared.

Acknowledgements

We would like to thank Pamela Royle for her help in developing bibliographic search strategies for this review, and to Sue Ziebland for her helpful comments to earlier drafts of this paper.

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