Living with lymphoedema—the perspective of cancer patients: a qualitative study
Ángela Río-González, Francisco Molina-Rueda, Domingo Palacios-Ceña & Isabel M. Alguacil-Diego. Supportive Care in Cancer, 2018
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Living with lymphoedema—the perspective of cancer patients: a qualitative study
Ángela Río-González, Francisco Molina-Rueda, Domingo Palacios-Ceña & Isabel M. Alguacil-Diego. Supportive Care in Cancer, 2018
Purpose The aim of this study was to describe the lived experience of lymphoedema and the barriers faced by cancer sufferers receiving physiotherapy outpatient treatment.
Methods A qualitative, phenomenological study was performed. Purposeful sampling method was used. Data collection methods included unstructured and semi-structured interviews and researcher field notes. A thematic analysis was used. The study was conducted following the Consolidated Criteria for Reporting Qualitative Research guidelines.
Results Eleven patients (62.18±10.14years) (90.91%women) participated. One theme was identified with different subgroups. The main theme ‘Living a life with multiple barriers’—formed by the subthemes ‘Discovering physical and psychological barriers’, ‘Searching information’, ‘Building relationships’ and ‘Controlling expenses’—displays the daily difficulties they must face in areas such as work. The patients reported that lymphoedema is a constant emotional and physical challenge. They need to adapt their lives to their new situation, learning how to manage the lymphoedema.
Conclusions Patients considered lymphoedema as a clinical situation with multiple barriers and they found that it does alter their quality of life. These results can be applied in onco-haematology units to develop specific protocols for customers.
Main findings
There are few qualitative studies that have explored how people live with lymphoedema following treatment in the everyday life context.
Data collection was firstly by unstructured interviews this then informed the second stage of semi-structured interview by a question guide.
One main theme was identified based on the findings regarding the experiences of patients dealing with lymphoedema which was, ‘Living a life with multiple barriers’. There were then subthemes:
- Discovering physical and psychological barriers The participants describe different problems depending on the type of occupation. All participants describe how their leisure and sports activities are limited, with lower limb lymphoedema patients being the most affected. Psychological barriers are mainly related to the chronicity and self-image. It can generate stress, anxiety, confusion and misunderstanding. Patients affirm that it is a traumatic event, and even say that lymphoedema is many times harder to deal with than cancer.
- Searching information Participants are faced with a significant lack of information, even among health professionals. They report that they are usually informed through the Internet or by their physiotherapist, despite the latter being the last health professionals to deal with them.
- Building relationships The social barriers faced by participants are related to personal relationships and to social pressure. Participants feel frustrated at not being able to do everything they would like to do. Younger participants need support and understanding from their environment, and they are interested in sharing experiences with other similar patients. Participants confirm that relationships with those people in their inner circle are not affected. However, with the people around them, they do not feel comfortable at all.
- Controlling expenses Expenses related to lymphoedema treatment and management are high.
