The meaning of acceptance and body awareness for individuals living with long-term pain : implications for rehabilitation

Background: Chronic or long-term pain, usually defined as pain lasting at least three to six months, is generally understood as a multidimensional phenomenon, often requiring a multidisciplinary rehabilitation approach. The aetiology of longterm musculoskeletal pain is considered to be multi-factorial. Although body awareness treatment approaches and acceptance-based methods are incorporated in pain rehabilitation, there is still a need for knowledge as to how they contribute to the process of change in rehabilitation. Both body awareness and acceptance are multi-dimensional concept. Aims: The aims of the thesis were to describe how individuals with long-term musculoskeletal pain experience and relate to (a) their aching body (Study I), (b) body awareness as a resource in rehabilitation (Study II). A further aim was to investigate how individuals participating in a multi-professional rehabilitation programme experience and understand (c) the meaning of acceptance when entering the rehabilitation programme (Study III) and (d) how this meaning change during the rehabilitation programme (Study IV). Methods and results: Three different samples were included, in total 27 women and 12 men between the ages of 24–72 years with pain duration between 2.5–35 years. In-depth interviews and a phenomenological research approach were chosen as well as a qualitative longitudinal research design. In study I, the results indicate that patients with long-term pain can be found along a spectrum from accepting to rejecting the aching body. Body awareness and a trust in ones’ body seem to be important on the path towards acceptance of the body as well as one’s life situation as whole. In study II, three constituents were identified as a gradual ‘moving forward’ process, which was characterized by a shift in attentional focus that concerns the lived body, the embodied self and the life-world beyond the experience of pain. In study III, the findings were that patients can hold different understandings of acceptance when entering a rehabilitation program expressed as; the only way forward, a possible but challenging way forward and no way forward. In study IV, four meaning structures that deepened the understanding of acceptance as well as illustrating key aspects of an embodied learning process during rehabilitation could be described; acceptance as liberation, acceptance as acknowledging the need for change, acceptance as tolerating ambivalence and acceptance as failure. Bodily-existential challenges were highlighted as well as the importance of social support. Conclusions: This thesis has shown both the importance of acceptance for rehabilitation as well as the role of embodied transformative learning. Acceptance was found to be a multifaceted phenomenon varying from person to person and over time. Although body awareness approaches are prevalent in some clinical settings, these studies show from an experiential perspective that body awareness has an important role to play in the successful rehabilitation of long-term pain. The findings in this thesis support the person-centred approach in rehabilitation, weather in group or individual treatment

Perceptions of lymphoedema treatment in patients with breast cancer - a patient perspective

Lymphoedema after breast cancer surgery is a chronic condition. Lymphoedema treatment consists of information/advice, compression, physical exercise, skin care, and manual lymph drainage. Little is known about how patients experience, adapt, and respond to lymphoedema treatment. Thus, the purpose of the study was to investigate and describe women's perceptions of lymphoedema treatment after breast cancer surgery. Sixteen women with breast-cancer-related lymphoedema, recruited from four hospitals and two rehabilitation clinics, participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. Five qualitatively different categories of description could be identified: uncertainty, disappointment, guilt and shame, safety, and autonomy. The categories could be described based on a two-dimensional structure: the patients role (internal vs. external locus of control) and an understanding of lymphoedema as a chronic disease or a burden. The study has provided a deeper understanding of different ways in which patients perceive and respond to lymphoedema treatment. The present findings enable the lymphoedema therapist to individualise treatment and counselling based on each patient's approach to the patient role, ability to take responsibility for treatment, and acceptance of lymphoedema as a chronic disease