The role of physical activity in the lives of people with lymphoedema following cancer treatment : a social constructionist study

Lymphoedema is a chronic condition predominantly affecting the limbs, although it can involve the trunk and other areas of the body. It is characterised by swelling due to excess accumulation of fluid in body tissues. Secondary lymphoedema, which arises following cancer treatment, is the more common form of lymphoedema in developed countries. At least 20% of those diagnosed with the most common cancers will develop lymphoedema. This is a concern in Australia as incidence of these cancers is increasing. Cancer survival rates are also increasing. Currently, this equates to 9 300 new cases of secondary lymphoedema diagnosed each year. Considerable physical and psychosocial impacts of lymphoedema have been reported and its subsequent impact on health-related quality of life can exacerbate other side effects of cancer treatment. Exercise following cancer treatment has been shown to significantly reduce the impact of treatment side effects, improve quality of life and physical status. While participating in exercise does not increase risk nor exacerbate existing lymphoedema, reductions in incidence of lymphoedema exacerbations and associated symptoms have been observed in women participating in regular weight lifting following breast cancer treatment. Despite these benefits, lymphoedema prevention and management advice cautions people with lymphoedema against „repetitive use. or „overuse. of their affected arm. It is possible that this advice creates a barrier to participation in physical activity; however, little is known about the relationship between physical activity and lymphoedema. In addition, the majority of studies examining the experiences of people living with lymphoedema and the impact of the condition have been predominantly conducted internationally and have focused on women following breast cancer. This study sought to explore firstly, how men and women construct their experience of living with lymphoedema following treatment for a range of cancers in the context of everyday life in Australia; and secondly, to analyse the role of physical activity in the lives of those living with lymphoedema following cancer treatment. A social constructivist grounded theory approach was taken to explore these objectives as it is acknowledged that human actions and the meanings associated with these actions are influenced by the interaction between the self and the social world. It is also acknowledged that the research process itself is a social construction between the researcher and participant. Purposive sampling techniques were used to recruit a total of 29 participants from a variety of sources. Telephone interviews and focus groups were conducted to collect data. Data were concurrently collected and analysed and analysis was conducted using the constant comparative method. The core category that developed in objective one was „sense of self‟. The self was defined by perceptions participants held of themselves and their identity prior to a lymphoedema diagnosis and changes to their perceptions and identity since diagnosis. Three conceptual categories which related to each other and to „sense of self‟ were developed through the process of coding that represented the process of how participants constructed their experiences living with secondary lymphoedema in the context of everyday life. Firstly, altered normalcy reflected the physical and psychosocial changes experienced and the effect it had on their lives. Secondly, „accidental journey‟ reflected participants‟ journey with the heath care system prior to diagnosis through to longer term management. Thirdly, renegotiating control revealed participants perceived control over lymphoedema and their ability to participate in daily activities previously enjoyed. These findings revealed the failure of the broader health system to recognise the significant and chronic nature of a lymphoedema diagnosis following cancer treatment with greater understanding, knowledge and support from health professionals being needed. The findings also reveal access to health professionals trained in lymphoedema management, a comprehensive approach encompassing both physical and psychosocial needs and provision of practical and meaningful guidelines supported by scientific evidence would contribute to improved treatment and management of the condition. The key findings for objective two were that people with lymphoedema define physical activity in different ways. Physical activity post-diagnosis was perceived as important by most for a variety of reasons ranging from everyday functioning, to physical and psychosocial health benefits. Issues relating to the impact of lymphoedema on physical activity related to the impact on peoples‟ ability to be physically active, confusion about acceptable forms of physical activity and barriers that lymphoedema presented to being physically active. A relationship between how people construct their experiences with lymphoedema and the role of physical activity was also established. The contribution of physical activity to the lives of people living with lymphoedema following cancer treatment appeared to be influenced by their sense of self as socially constructed through their experiences prior to diagnosis and following diagnosis with lymphoedema. The influence of pre-lymphoedema habits, norms and beliefs suggests the importance of effective health promotion messages to encourage physical activity among the general population and specific messages and guidelines particular to the needs of those diagnosed with lymphoedema following cancer treatment. The influence of participant.s social constructions on the lymphoedema experience highlights the importance of improving interactions between the overall health care system and patients, providing a clear treatment plan, providing evidence-based and clear advice about participation in appropriate physical activity, which in doing so will limit the physical and psychosocial effect of lymphoedema and providing comprehensive physical and psychosocial support to those living with the condition and their families. This study has contributed to a deep understanding of people.s experiences with lymphoedema following cancer treatment and the role of physical activity in the context of daily life in Australia. Findings from this study lead to recommendations for advocacy, a comprehensive approach to diagnosis, treatment and management, and specific areas for future research.