"Health, Risk & Society"

Clarke, Charlotte L.

doi: 10.1080/13698570903045427pmid: N/A

This editorial draws together the key issues arising from five papers which form a special edition focusing on risk in long-term conditions. The papers address research on falls in older people (Fortinsky et al. 2009), alcohol-related brain damage (Keady et al. 2009), children with a disability (Oulton and Heyman 2009), women with endometriosis (Seear 2009) and survivorship in cancer (Roberts and Clarke 2009). These papers allow us an insight into the interplay between the individual's experiences, the services with which they interact, and the society they live in which shapes these experiences. Firstly, events which can be assumed to be catastrophic may be experienced as indeed threatening to the individual's biography but through processes such as searching for meaning there is the opportunity for reconciliation. These concepts of biography and reconciliation thread into the second issue in which risk has a dual positive and negative nature (as enhancing quality of life and as threatening safety). However, the dual nature of risk is in itself an inadequate understanding of an individual's experiences when living with the disabling effect of societies themselves, which can restrict choice and decision-making. As a result, the third issue concerns the contradictory way in which risk is used to promote safety but to also promote autonomy. This perpetual tension in the deployment of ‘risk’ fuels, and is reflexively fuelled by the fourth concern of this editorial; the contested and ever-changing location of responsibility and risk expertise. These dynamics of theory, policy and practice have a profound influence on the experiences of people, and demand further analysis if we are to better enable people to live positively with a long-term condition.

Oulton, Kate; Heyman, Bob

doi: 10.1080/13698570903013631pmid: N/A

This paper aims to explore the risk perceptions of parents caring for children who have severe learning disabilities and complex medical needs. The paper draws upon a qualitative study involving 20 parents, mostly mothers. The findings document the demanding care requirements which these parents had to meet. Parents viewed their role in terms of devoted vocation rather than meeting a burdensome obligation. This dedication interacted with heightened risk consciousness to fuel a sense of undelimited responsibility. Parents tended not to place sectoral or temporal boundaries around their responsibility for the care of their child. Their approach was mediated by a prevailing but not universal mistrust of the caring capabilities of others. Although parents sometimes temporarily transferred caring duties to others, they usually retained a sense of anxious responsibility for such care, supervising or auditing the activities of other carers rather than delegating risk ownership. Trust was conferred on others only when they had demonstrated a good record of accomplishment of care for the child, and were seen to have acquired detailed idiographic understanding of their individual complex needs. The findings can be understood in relation to a broader societal context of individualisation of responsibility.

Keady, John; Clarke, Charlotte L.; Wilkinson, Heather; Gibb, Catherine E.; Williams, Linda; Luce, Anna; Cook, Ailsa

doi: 10.1080/13698570903015743pmid: N/A

To date, the voice and experience of people with alcohol-related brain damage has been silent in the literature. Using narrative research methodology and a focus on risk and quality of life, this paper outlines the analysis of interviews with six people with alcohol-related brain damage who were resident on a specialist care unit for the condition. Of the six participants, four were interviewed twice in line with the study protocol and separate interviews were conducted with a key worker on the unit, a social worker and a relative of one of the female participants. Analysis of the interviews revealed three dominant, narrative storylines: Five Minute Memory; Fractured Lives; and Believing in Recovery. Risk was constructed and experienced in a variety of ways under each of these narrative storylines, but each participant was particularly vulnerable to the assimilation of alcohol-related brain damage as a component and projection of self and identity. In addition, the process of ‘prompting’ emerged as a way that care staff constructed and discharged their rehabilitative function on the care unit and worked to minimise risk factors. A more co-ordinated, robust and transparent funding, policy, education and service structure for people with alcohol-related brain damage is called for.

Fortinsky, Richard H.; Panzer, Victoria; Wakefield, Dorothy; Into, Frances

doi: 10.1080/13698570903015735pmid: N/A

Falls in later life have long been identified as an important public health problem worthy of investigation and intervention because they are preventable and are associated with excess disability and mortality. Interventions to prevent falls in older people have focused on physiological risk factors and psychological risk factors. Fear of falling is the most extensively studied and targeted psychological risk factor for falls. Less is known about the extent to which older adults might express higher balance confidence despite being at known high fall risk based on fall history. The present study examined older adults' self-reported balance confidence in the context of known fall risk, and determined the degree of alignment between their balance confidence and known fall risk. Based on this alignment, older adults were classified as timid (lower balance confidence and lower fall risk), congruent (lower confidence and higher risk, or higher confidence and lower risk), or over-confident (higher confidence and higher risk). In a sample of community dwelling adults aged 62 or older with a history of fall-related incidents (n = 329), between 26% and 42% of sample members were found to be over-confident, while less than 10% were classified as timid. Subjects aged less than 75 years old were more likely than their older counterparts to be categorised as over-confident, while the likelihood of over-confidence was not associated with gender or depressive symptom severity. Research, practice, and policy implications of the phenomena of alignment between balance confidence and known fall risk, and over-confidence, are discussed.

Roberts, Karen; Clarke, Charlotte

doi: 10.1080/13698570903013623pmid: N/A

The purpose of this study was to develop an understanding of the experience of a gynaecological cancer diagnosis on women and their family in the year following treatment. The psychological and social consequences of gynaecological cancer and treatment have received little attention in research or practice until recently. Cancer service developments, however, are increasingly looking towards nurses to address the psychosocial needs of patients and families without necessarily having sufficient knowledge of what those needs are. This Grounded Theory study used symbolic interactionism as an interpretive framework. Twenty women were interviewed who were at least 12 months post-surgical treatment for gynaecological cancer. The analysis highlighted the degree of biographical disruption that occurs following illness that can affect both women and partners and a theory of future disorientation was developed. This study advances a conceptualisation of the chronicity of gynaecological cancer survivorship in relation to the challenge of living with the risk of the cancer returning, and how women's approaches to managing that risk affect their perception of the future. Cancer services within primary care must develop skilled professionals and interventions to provide appropriate and timely support for patients following cancer treatment, so that the successful outcome of a cure is not clouded by women having to live for many years with the fear of cancer recurrence.

Seear, Kate

doi: 10.1080/13698570903013649pmid: N/A

This paper examines the phenomenon of non-compliance with health advice among 20 women who have been diagnosed with a chronic and incurable gynaecological condition called endometriosis. Non-compliance with health advice has been identified as a major problem in health education and behavioural literature. Constructed as a problem largely of individual patients, much research focuses upon the traits that predispose individuals to non-compliance and communication barriers to compliance. The promotion of encouragement is assumed to be an appropriate health care goal. In this paper I explore non-compliance from the perspective of the women, arguing that women's non-compliance is a form of rational expertise equivalent to scientific and medical expertise. Women's non-compliance emerges out of their subjective experiences of self-care and risk-avoidance injunctions as burdensome and excessive, as well as practically impossible, time-consuming and too expensive. Non-compliance is also motivated by a desire to avoid exposure to potential risks that can arise from compliance itself. Women also resist risk-avoidance advice on the basis of their scepticism and mistrust of doctors, whose expertise about endometriosis they doubt. This analysis contributes to our understanding of patient non-compliance and has ramifications for how health promotion and risk-avoidance campaigns are constructed and implemented, especially where chronic illnesses are concerned.

McCormack, Brendan

doi: 10.1080/13698570903202218pmid: N/A

Mitchell, Wendy

doi: 10.1080/13698570903202226pmid: N/A