How do adults with cystic fibrosis cope following a diagnosis of diabetes?

The official published version of the article can be obtained from the link below.Aim. This paper is a report of a study examining the experience of adults with cystic fibrosis in adapting to the diagnosis of diabetes, a second chronic illness. Background. Diabetes is a common complication of cystic fibrosis; the onset signifies the development of a second chronic illness. Both cystic fibrosis and diabetes are complex conditions, which require daily treatment schedules as part of their management. However, it is unclear how people already living with cystic fibrosis respond to the diagnosis of diabetes. Method. A qualitative method was chosen to obtain an ‘insider’ experience of adjusting to a second chronic illness. Semi-structured interviews were conducted in 2004 with 22 adults with cystic fibrosis-related diabetes. The data were analysed using interpretative phenomenological analysis. Findings. Four recurring themes were identified: emotional response to diagnosis of diabetes, looking for an understanding, learning to live with diabetes, and limiting the impact of diagnosis. Having cystic fibrosis appeared helpful in limiting the impact of the diagnosis of diabetes. Juggling conflicting dietary demands of cystic fibrosis and diabetes coupled with the lack of practical professional advice available was seen as one of the biggest challenges in adapting to diabetes. Conclusion. Healthcare professionals need increased awareness of diabetes amongst adults with cystic fibrosis and provide adequate support and structured evidence-based education throughout the course of the illness, particularly in relation to diet. Nevertheless, patients’ familiarity with regular daily routines and problem-solving attitudes, already developed in the context of cystic fibrosis, may be drawn on to limit the impact of diabetes

The role of art-making in identity maintenance: Case studies of people living with cancer

The aim of this qualitative research was to understand why some people with cancer take up art as a leisure activity, and how visual art-making in daily life might support identity maintenance/ reconstruction. The study forms part of a larger project with people who view art-making as a resource for living with chronic illness. In order to provide a detailed, holistic analysis, the paper focuses on the accounts and artwork of three participants, two women (aged 47 and 59) each with breast cancer, and a man (aged 51) with stomach and lung cancer. The participants turned to art after a process of reflection but did not necessarily reject their pre-illness lifestyles or selves. Rather, art-making afforded many opportunities to retain familiar personal and social identities, and to resist being dominated by labels related to their illness. A practical implication is that people coping with cancer may need not only cognitive and emotional support, but opportunities to find meaningful activities. Such activities can be understood to have a powerful role in maintaining a familiar, positive identity in cancer, and providing a resource for coping

“Sticking jewels in your life”: Exploring women’s strategies for negotiating an acceptable quality of life with multiple sclerosis

This study explored women’s strategies for living with multiple sclerosis (MS). Twenty-seven women were interviewed, most of whom had lived with MS for more than five years. Analysis of the semi-structured interviews followed the interpretative phenomenological approach. The women portrayed living with MS as an ongoing process of negotiation, and described gaining quality of life through looking after their health; maintaining a familiar self-image, particularly through meaningful occupations, and adapting pre-illness skills and interests to their changing levels of physical functioning; actively valuing positive life experiences, including finding benefits in adversity; clarifying values, priorities and philosophy of life; and maintaining mutual, caring relationships. Some regarded MS as presenting opportunities for personal growth. Without minimizing the very substantial difficulties that MS presents, the findings suggest that well-being derives from both managing the illness and also embracing life’s wider experiences, including change and growth. Implications for rehabilitation and counseling professionals are considered

Creative adventures and flow in art-making: A qualitative study of women living with cancer

(Introduction) A diagnosis of cancer is recognised as highly fear-arousing. People not only face the discomforts of potentially disfiguring medical treatment but also confront issues of mortality. Even those who have completed treatment tend to ‘live with’ cancer for many years, because they remain subject to intrusive thoughts about cancer and concerned about possible recurrence and metastasis (Saegrov and Halding 2003, Laubmeier and Zakowski 2004). As well as creating worry and vigilance, cancer imposes what has been described as a biographical disruption (Bury 1982). After such a diagnosis, the person may feel that valued life goals are unattainable. The assumptions that guided life before cancer may be shattered and the person may feel disconnected from the familiar self, observing – from the avoidance or the pity of others – that only a stigmatised cancer identity remains (Frank 1991, Mathieson and Stam 1995). Facing such a combination of physical, emotional, cognitive and social stressors, it would seem difficult for people with cancer to construct a life of positive quality. Yet research studies suggest that many people devise resourceful coping strategies. Some people cope by reprioritising their goals to enjoy more authentic relationships and activities. Some even come to re-evaluate their illness as having catalysed certain positive changes (for example, Mathieson and Stam 1995, Carpenter et al 1999, Urcuyo et al 2005). However, previous research has tended to neglect the potential contribution of meaningful occupations to maintaining or regaining subjective wellbeing in cancer. Flow has been conceptualised as a particular type of optimal experience associated with ‘vital engagement’, a deep involvement in activities that are significant to the self and that promote feelings of aliveness or vitality (Nakamura and Csikszentmihalyi 2002, p83). To what extent vital engagement offers people living with cancer a source of subjective wellbeing has received little previous examination in the occupational therapy literature. This issue is addressed here

'A lifestyle coat-hanger': A phenomenological study of the meanings of artwork for women coping with chronic illness and disability

Purpose: The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being. Method: Thirty women were interviewed, and five submitted written narratives. Interpretative phenomenological analysis was carried out. Results: About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a ‘lifestyle coat-hanger’ organising numerous further roles and activities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before. Conclusion: The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury