Edinburgh Napier University

  Aim: This study explored the nature of supported self-care for women who had lymphoedema associated with breast cancer treatment, and the work of lymphoedema practitioners.
Background: Health policy indicated a need to examine the potentially evolving roles of individuals with long term conditions who undertake self-care, and health professionals who provide support. Lymphoedema affects around one in five women who undergo treatment for breast cancer. A woman with lymphoedema can experience long term swelling, most commonly of her arm, affecting her life in various ways.
Methods: Three small group discussions were undertaken with women who had lived with lymphoedema for more than two years (n=7). Field observation (n=16) of clinic appointments with women who had lymphoedema, were undertaken alongside interviews (n=15) with eight lymphoedema practitioners. Women who had newly developed lymphoedema (n=10) were interviewed three times over a period of six months. The study was underpinned by social constructionist perspectives, and informed by feminism and relational autonomy theory.
Findings: Various structures of power influenced the capacity for supported self-care in women and practitioners. Lymphoedema influenced women’s self-identity, and women experienced substantial distress and frustration relating to the initial development of lymphoedema, the chronic nature of the condition, and in adapting to self-care. Lymphoedema practitioners provided support for women from within a mainly bio-medical framework of care, often based within acute clinical settings. Accessing local, trusted information and advice relating to lymphoedema self-care was challenging for some women.
Conclusion: An anticipatory approach to supported self-care was identified. The development of reflexivity and self-discovery was considered equally relevant to women with lymphoedema and lymphoedema practitioners. Professional approaches to support should recognise this anticipatory perspective and enable timely access for women to individualised and appropriate support at key points in their lymphoedema trajectory.