At what point can I lift things? Women’s satisfaction with lymphoedema prevention information after breast cancer surgery
Sara J. Hurren, Karen Yates. Collegian 26 (2019) 335–340
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At what point can I lift things? Women’s satisfaction with lymphoedema prevention information after breast cancer surgery
Sara J. Hurren, Karen Yates. Collegian 26 (2019) 335–340
Background: There is a paucity of evidence regarding satisfaction with lymphoedema prevention information in the literature. This assessment is supported by both anecdotal discussions with health professionals in North Queensland and by searching the literature.
Question: How satisfied are women with breast cancer in North Queensland with the information provided about lymphoedema prevention strategies? This qualitative descriptive study explored the views of regional women to determine aspects of satisfaction with reference to the type of information provided, appropriateness of clinical information and timeliness of information at the specific stage of their illness trajectory.
Methods: Eleven participants were recruited in North Queensland and all consented to an audio-taped, open ended, and semi-structured interview. The recordings were transcribed verbatim and analysed using Braun and Clarke’s six-step approach to inductive thematic analysis.
Findings: This study identified gaps in the information provided regarding lymphoedema prevention and management. The participants in this study were dissatisfied with the information provided and a gap was identified in evidence based information on exercises and lymphoedema prevention strategies.
Discussion: Current provision and content of lymphoedema prevention information warrants further investigation. Further research into the different communication styles for women, brochure formats, timing of information, delivery options, and evidence based lifestyle and behavioural activities and best practice was identified. This study’s findings clearly showed more tailored information would reduce confusion. The teaching strategies used for lymphoedema prevention and post-surgery instructions warrant further evidence based guidelines. Evidence based guidelines would be of tangible value for both affected women and health professionals.
Conclusion: This study identified that some of the lymphoedema literature supplied is dated, and improvements in tailored information would assist women with breast cancer and improve satisfaction.
Main findings
- Small sample size N = 11
- The aim of this study was to gain an understanding of regional north Queensland women’s satisfaction with the lymphoedema.
- Evidence that women with breast cancer are not satisfied with the generic information on lymphoedema prevention strategies. Therefore, further research is needed to address the gap in the evidence regarding the information provided about preventative strategies and self-care activities.
- This paper considers this subject via a number of themes.
- Theme 1: Information gaps – Participants wanted information specifically about high-risk factor categories, predisposing factors and statistical chances of development. For many of the women, the information was overly general. Lymphoedema information needed to be more tailored. Many of the participants were confused about the literature’s lack of instructions beyond the initial treatment postsurgery.
- It was felt that the information was out of date and not tailored to the individual. While written information in paper form was the predominant way in which participants received information, they expressed a desire for information to be presented in a variety of forms. Being able to discuss the information with a health professional was extremely useful; however, after discussions the women would have preferred other media type options to be available on lymphoedema.
- Theme 2: emotional responses- Feeling a sense of information overload at the time of diagnosis when important decisions are to be made was described by participants as contributing to this emotional upheaval. Feelings of being overwhelmed were also described as greatly complicating their decision making.
- Theme 3: physical changes – The exercises and massaging are onerous, with women often in paid employment and managing other duties. The preventative measures may be a burden and impact on the everyday lifestyle of women with breast cancer.
