Reconfiguring Life: A Grounded Theory Study on Living with Lower Limb Lymphoedema

Abstract

This thesis presents the theory of Reconfiguring Life which explains how adults live with moderate to severe lower limb lymphoedema. Lymphoedema is a long-term, progressively deteriorating condition; with associated symptoms such as limb swelling, heaviness, changes in personal appearance, reduced mobility and complications that are disruptive, debilitating, and, on occasions, life threatening. Lymphoedema may affect one or two limbs and adjacent areas but can occur anywhere in the body. Left untreated the condition leads to significant physical and psychosocial incapacity. Lymphoedema is a health issue in lower- and higher-income countries, through differing causal factors. Lymphoedema is an under researched area.

Most lymphoedema in higher-income countries, such as Aotearoa New Zealand, is acquired through treatment for cancer. As cancer rates increase, so too does the risk of lymphoedema. The literature is dominated by breast cancer related lymphoedema which affects the upper limb (arms). This research set out to give voice to those living with the more burdening lower limb lymphoedema.

The research question was “How do people live with moderate to severe lower limb lymphoedema?” A constructivist grounded theory study informed by Charmaz was undertaken. Twelve participants who lived with primary or secondary lower leg lymphedema were interviewed. Data collection and analysis followed a constructivist approach. The resulting theory provides an in-depth view into how people live following the onset of moderate to severe lower limb lymphoedema.

This thesis proposes that there are three phases in adapting to living with lymphoedema which leads to transformative change. Transformation is initiated in phase one through physical changes termed ‘being led by the body.’ During this time, moderate to severe lower limb lymphoedema often dominates life experience with a loss of previous normality. There is a subsequent fracturing of the previous identity, which precipitates phase two termed ‘being led by feelings.’ A turning point is reached, and transformative change is triggered. Phase three, termed ‘leading with the mind,’ reconfigures the new normal through ‘what I learn,’ ‘what I do’, and through ‘how I come to be.’ Through this process, lymphoedema assumes an appropriate place as a condition to be managed. The main motivator for the process is managing disruption which refers to responding to the demands of an unstable condition which alters and disrupts ordinary life.

My study identified that lymphoedema therapists are critical to the process of supporting transformative change for those adapting to living with lower limb lymphoedema. Those who receive self-care support are positioned to learn how to manage disruptions, mitigate the disruptions of lymphoedema, and place the condition within the context of their lives. Without sufficient support for self-care, achieving self-management is highly problematic.

The implications for clinical practice relate to providing an explanatory framework for lymphoedema therapists to convey the transformative reconfiguring through which people move. The framework may be useful for advocating for policy change and to those working alongside lymphoedema therapists such as oncologists, surgeons, nurses, and general practitioners. The framework may be useful for supporting people living with lymphoedema to understand their own journey; and for friends, family, and support people to gain an insight into this under researched, under recognised, and misunderstood condition.