Exploring patient perception of success and benefit in self-management of breast cancer-related arm lymphoedema.
OBJECTIVE
The aim of this study was to identify factors influencing patient perception of success and benefit with self-management of breast cancer-related lymphoedema (BCRL) and explore how patients decide whether their swollen limb has improved or deteriorated.


METHODS
This qualitative study used a Grounded Theory approach. Twenty-one women in the BCRL self-management phase participated in one in-depth interview exploring their experience and perspective on self-managing their BCRL.


RESULTS
Seven enablers and blocks to self-management were identified: routine, recognising benefit of self-management and consequences of non-treatment, owning treatment, knowledge and understanding, problem-solving, time required for treatment and aesthetics of hosiery. Women determined treatment outcome by monitoring size, appearance, texture and internal sensations within the affected arm.


CONCLUSIONS
Women who participated in this study showed varying degrees of acceptance and adjustment to life with lymphoedema. This appears to directly impact their ability to self-manage lymphoedema. Lymphoedema practitioners and oncology nurses have a valuable role providing knowledge and support to patients transitioning to independent self-care. A better understanding of factors facilitating patients to become experts in their condition may improve longer term outcomes and reduce cost pressures on lymphoedema services.
Guy's & St Thomas's NHS Foundation Trust, London, UK; King's College London, UK. Electronic address: eunice.jeffs@kcl.ac.uk.
Eunice
E
Jeffs
University of Surrey, UK.
Emma
E
Ream
Guy's & St Thomas's NHS Foundation Trust, London, UK.
Amanda
A
Shewbridge
University College London Hospital, London, UK.
Siobhan
S
Cowan-Dickie
Patient, London, UK.
Diana
D
Crawshaw
Guy's & St Thomas's NHS Foundation Trust, London, UK.
Martine
M
Huit
Royal Marsden NHS Foundation Trust, UK.
Theresa
T
Wiseman
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001132:Arm / Q000503:physiopathology*; D001943:Breast Neoplasms / Q000150:complications* / Q000628:therapy; D005260:Female; D066296:Grounded Theory; D006801:Humans; D008209:Lymphedema / Q000209:etiology* / Q000523:psychology / Q000628:therapy*; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D010465:Perception; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012648:Self Care / Q000523:psychology*
Breast cancer; Grounded theory; Lymphoedema; Patient compliance; Qualitative research; Self-management; Treatment adherence