Consumers and the social world of health care: outsiders in the expert's world: a grounded theory study

Background Until the 1970s, the biomedical model was the predominant model of care used in Western health care system. Under this model, the human body and how it is affected by illness are central to treating patients, to the exclusion of peoples' experience of illness (Engel, 1977; Henderson & Henderson, 2010). Within this model, doctors dominate and patients are passive, obedient and admiring (Digby, 1997). The introduction of the biopsychosocial model of health care in the 1970s shifted focus from the human body and illness to consumers' psychological and social contexts being viewed in conjunction with their illness. Although the concept of patient-centred care was introduced in the mid 1950s (Balint, 1969; de Haes, 2006) it was not until the 1990s that it became prominent in Western health care policy and practice. The concept of patient-centred care emphasises care that is "respectful of and responsive to individual patient preferences, needs and values and ensur[es] that patient values guide all clinical decisions" (Committee on Quality of Health Care in America, 2001, p. 6). Under this model, there is an assumption that consumers share power and responsibility for their health and health care with health experts (Mead & Bower, 2000). The interactional relationship between consumers and health experts is central to the delivery of health care. While 'doctor-patient' relationships still play a key role in health care, these relationships are not as haloed as they once were (Bury, 2004). The "golden age of doctoring" is over (McKinlay & Marceau, 2002, p. 379). Consumers' central health professional may now be a nurse practitioner or a complementary practitioner (McKinlay & Marceau, 2002). Gaining insight into processes of interaction between consumers and health experts across health settings and health conditions enables improvements in both efficiencies and quality of health care, and has the potential to improve consumer health outcomes. Aim The aim of this study is to construct a grounded theory that explains the processes of interaction between health consumers and health experts. Justification There is a gap in the literature that presents processes of interaction between consumers and health experts across a variety of health settings and health conditions. Ethics Ethical considerations were followed in accordance with the National Statement on Ethical Conduct in Human Research 2007 (The National Health and Medical Research Council, the Australian Research Council, & and the Australian Vice-Chancellors' Committee, 2014). The Far North Queensland Human Research Ethics Committee (FNQ HREC) approved the study (HREC/13/QCH/28–830) and James Cook University Human Ethics Research Committee endorsed the approval (H5173). Further to ethics approval, Site Specific Assessment (SSA) was required to conduct non-participant observation and to recruit study participants at the Cairns Hospital. Approval was granted (SSA/14/QCH/8 - #830). Methodology The researcher used Strauss and Corbin (Strauss & Corbin, 1990, 1998) and Corbin and Strauss' (Corbin & Strauss, 2008) evolved version of grounded theory to examine the process of interactions between consumers and experts. This version of grounded theory is explicitly underpinned by symbolic interactionism. Grounded theory provides a systematic approach to conducting research, which aims to generate theory grounded in data. It is also an appropriate way to examine an area of study in which there is little prior knowledge. Symbolic interactionism provides a perspective through which to explore processes of action and interaction. Methods Essential grounded theory methods (Birks & Mills, 2011) used in this study include: concurrent data collection/generation and analysis, theoretical sampling, initial and intermediate coding of data, constant comparative analysis of data, theoretical integration of data, selecting a core category and memo writing. Data were collected and generated using the following techniques: demographic information questionnaires, semi-structured interviews, participants' diary entries, fieldnotes, non-participant observation and digital storytelling. Sampling The study was conducted in the Australian regional city of Cairns in Far North Queensland. The researcher used purposive and theoretical sampling techniques, which resulted in a total of 32 study participants, comprising 23 health consumers and 9 health experts. Findings The resultant product of this study is the grounded theory titled: Outsiders in the experts' world. The theory consists of five categories and their sub-categories, which explain the process experienced by people who unexpectedly enter the social world of health care and become health consumers. Consumers generally move sequentially through the stages of the process, although the stages may overlap or be revisited. The categories and sub-categories of the grounded theory are: 1) Unexpected entrance (Emotional fluctuations; Changing perceptions of self); 2) Learning a new role (Acquiring knowledge; Learning the language of health care; Confronting mortality; and Cultivating support); 3) Establishing a presence (Gaining confidence; Choosing a voice; and Establishing relationships; 4) Confronting the dichotomy of 'us and them'; 5) Tailored care (Listening and acting; and Accessing experts). Discussion Findings from this grounded theory study present the processes of what happens when a person enters the social world of health care and how processes of interaction between them and health experts play out. The contingent relationship between what and how provides the basis for the discussion chapter, which addresses questions of why consumers are outsiders in the experts' world. The discussion chapter introduces extant theories to provide explanatory power to the grounded theory and to contextualise it within the broader literature. Conclusion Interactions between consumers and health experts are central to the delivery of health care. Findings from this study indicate that regardless of consumers' experience in their role, they remain outsiders in the social world of health care. The findings are significant in the current health care climate, which promotes consumer centred health care. A shared understanding between all stakeholders around the role of consumers will support the development of strategies to continually improve processes of interaction between consumers and health experts and to strengthen the consumer role