Development of a conceptual model of cancer caregiver health literacy.

Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers' capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy. Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model. Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems. The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy.

Health literacy: applying current concepts to improve health services and reduce health inequalities.

The concept of 'health literacy' refers to the personal and relational factors that affect a person's ability to acquire, understand and use information about health and health services. For many years, efforts in the development of the concept of health literacy exceeded the development of measurement tools and interventions. Furthermore, the discourse about and development of health literacy in public health and in clinical settings were often substantially different. This paper provides an update about recently developed approaches to measurement that assess health literacy strengths and limitations of individuals and of groups across multiple aspects of health literacy. This advancement in measurement now allows diagnostic and problem-solving approaches to developing responses to identified strengths and limitations. In this paper, we consider how such an approach can be applied across the diverse range of settings in which health literacy has been applied. In particular, we consider some approaches to applying health literacy in the daily practice of health-service providers in many settings, and how new insights and tools--including approaches based on an understanding of diversity of health literacy needs in a target community--can contribute to improvements in practice. Finally, we present a model that attempts to integrate the concept of health literacy with concepts that are often considered to overlap with it. With careful consideration of the distinctions between prevailing concepts, health literacy can be used to complement many fields from individual patient care to community-level development, and from improving compliance to empowering individuals and communities.

The concept mapping method. An alternative to focus group inquiry in general practice.

BACKGROUND: The concept mapping rationale and process are explained step by step. The concept mapping method produces a two dimensional conceptual map of ideas produced by the group which can be analysed at the level of individual statements, clusters of statements, and groups of similar clusters. An example of concept mapping conducted with four general practitioner (GP) groups from different practice types and demographic locations is provided. A total of 51 participating GPs were asked to complete an 'evaluation questionnaire' at the end of each group session. The majority of GP participants (68%) rated the method as highly useful. OBJECTIVE: To describe the concept mapping method and its interpretation for use in general practice research. To report on its perceived usefulness and acceptability by general practitioners. DISCUSSION: Concept mapping is a very useful method combining benefits from qualitative and quantitative approaches for exploring the breadth of a topic in its entirety, especially for abstract concepts. GPs found the concept mapping method to be efficient for group inquiry, rating it high on utility. There is scope to refine the method, reducing time spent in some stages of the session, and substituting more time on final analysis.

Can we achieve accountability for long-term outcomes?

OBJECTIVE: To explore options for the development of a set of indicators to assess the long-term outcomes achieved by all people with a given disabling condition in a given population. DATA SOURCES: The review draws on empirical studies of predictive indicators, theoretical literature on long-term recovery processes, and literature from administrative science on the use of indicators in accountability systems. STUDY SELECTION: Studies were selected that explicitly sought to relate short-term and long-term outcomes or that explored the mediating factors in the relationship between impairment, disability, and handicap. DATA EXTRACTION: The focus of the review is on (1) empirical evidence of the relationship between short- and long-term outcomes, particularly in causal claims, and (2) theoretical analyses of the factors that mediate this relationship. DATA SYNTHESIS: Evidence is presented that certain outcome states can be considered thresholds that make the outcome usable and, hence, sustainable or that create the opportunity for further improvement. Such thresholds could meet the construct validity criteria necessary for measures that are to be used as indicators in an accountability system. The interaction between psychological and physical factors in setting thresholds means that both objective and subjective indicators are required in an indicator system. CONCLUSIONS: It may well be possible to develop a parsimonious set of population-based outcome indicators for people with disabilities. The key safeguards required are construct validity and the involvement of people with disabilities in both the development and use of the indicators.