Self-care and cystic fibrosis: a review of research with adults

Abstract

The issue of self-care is becoming increasingly central to both policy and practice in health and social care in the community. It is imperative therefore that research in this important area is drawn together and presented coherently so as to ensure that change can be informed by evidence and implemented sensitively. As cystic fibrosis (CF) has until recently been regarded as a paediatric condition, there is relatively little research that focuses on the self-care of adults. Although not entirely uncritical of traditional biomedicine, these studies focus on individual patient deficits and are directed primarily at facilitating their 'compliance'. After discussing some important methodological, evidential and theoretical limitations of this research, other recent CF literature will be considered that suggests the possibility of developing a 'social model' for self-care research. The proposed model is more pluralistic and less prescriptive than its predecessors and the resulting 'types' of self-care indicate that both old and new, mainstream and marginal discourses should co-exist. Indeed, recognising the legitimacy of distinct varieties of self-care not only guards against unwarranted moralising and pathologising but may also enable self-care support to be negotiated and tailored more appropriately.

From Compliance to Concordance and Beyond

“…In practice, this means repeatedly asking 'what can a body can do?' and, at times, may therefore entail abandoning previously preferred medical models to encourage 'normalised' self-care or, alternatively, abandoning activist models to engage with those who care for patients on their behalf (Greenop, 2010). Whatever the desired end-point may be, as Katherine Thomas (This Issue) illustrates, dialogue rather than domination must be the start-point of a truly user-driven healthcare.…”

Living a ‘normal life’? Formal and informal supports in the lives of adults with cystic fibrosis

“…In general, the treatment of CF involves a daily routine of physiotherapy, exercise, a high calorie diet to counteract low absorption of food nutrients, the taking of tablets to aid digestion of food and regular oral and intravenous antibiotics to combat frequent chest infections. The development of new treatments, the improvement of older ones and the setting up of specialist CF centres in the UK has meant that the life expectancy of adults with CF has steadily increased (Greenop et al 2010). As a result, more and more adults with CF are entering higher education, employment, living independently, having long term relationships and becoming parents.…”

“…Without these treatments, the life expectancy of people with CF would be reduced. Because CF is a fluctuating condition, even with daily treatments, people with CF experience times when their symptoms worsen (Greenop et al 2010). Although the experiences of people with CF are rarely included in disability studies discussions, there are parallels between people with CF and other disabled people who have objected to the medicalisation of their lives and experiences on the basis that 'their impairments, even if they were disease-based, were not amenable to being cured by medical advances' (Oliver and Barnes 1998, 7).…”

“…Jenny for instance was struggling financially to meet her dietary requirement for a high calorie diet, often innate to survival for people with CF who need to eat additional quantities of nutritious (frequently expensive) food because their digestive system is unable to absorb nutrients as efficiently as people without CF (Greenop et al 2010). Because Jenny was not 'ill enough' she was unable to obtain benefits to fund the diet she required and without which her health was beginning to suffer as jobseeker's (unemployment) allowance alone was insufficient to cover the food she needed.…”

Working to Have a Normal Life With Cystic Fibrosis in an Adherence-Driven Health Care System

“…[8][9][10][11][12] Recent systematic reviews of theories used to predict medication adherence report modest effectiveness of any single theory. 13,14 In 2010, Greenop et al 15 advanced the notion of understanding behavior rather than focusing on correcting individual behavior. Although the body of work in this area is instructive to help understand predictors of adherence, it lacks the perspectives of those living with CF and their families.…”