A qualitative phenomenological study was conducted.15,16 In qualitative studies, phenomenology attempts to understand the essence of a phenomenon,9,17 and how individuals interpret their experiences. This experience always has a meaning for the person who has suffered it, and thus, phenomenological research uses first-person narratives from the participants themselves as a data source.9,17 In the present study, the phenomenon studied was “living with lymphoedema”. This experience could have different meanings for people who had cancer-related lymphoedema compared to people who had non-cancer-related lymphoedema.

Four researchers participated in this study, including two physical therapists (ARG, FMR), one medical doctor (IMAD), and one research nurse (DPC). All researchers had experience in qualitative studies, and none had prior interaction with the study participants. Only one researcher (ARG) had prior clinical and research experience with people with lymphoedema. Prior to the study, the researchers established their beliefs and their experience for the research,9,15,16 and considered that lymphoedema produces multiple challenges for everyday life of individuals, and it can influence their social relationships and other aspects of daily life (eg, economic situation).

In Spain, the public health-system generally provides patients with lymphoedema 15–20 sessions of complete decongestive therapy (CDT)18 per year and provides compression garment; for an annual cost of 2500 euros.19 In comparison, in private practice, the same 15–20 sessions of CDT are provided but patients are also followed weekly, monthly, and/or quarterly for maintenance treatment. This study was conducted at two physical therapy clinics with specialised lymphoedema units and patients were also recruited from the Lymphoedema Patient Association. Key clinical management aspects of lymphoedema include: evaluating clinical signs, classifying the stage of lymphoedema, controlling volume, understanding the pathology, learning how to handle the condition, and preventing risk factors.20–22 Lymphoedema daily care routine consists of myolymphokinetic exercises, skincare (hygiene and hydration), compression garment during the day, bandage or special night garment, and manual lymphatic drainage with physical therapists or self-drainage. Aerobic and strength exercise23 and dietary guidelines apply mainly for patients with cancer.7,18

Nineteen patients participated in the study. All patients were recruited at their first visit to the unit, and an interview was scheduled in the subsequent two weeks. Purposeful sampling was based on the relevance to the research question rather than clinical representation, and sampling continued until the data analysis produced redundant information.9,15,24

Inclusion criteria for all participants were: a) 18–80 years old, b) a diagnosis of lymphoedema according to the volumetric difference with the contralateral limb classified as mild (less than 20% volume or 2–3 cm circumference difference measured with a flexible nonstretch tape),18 moderate (between 20 and 40% volume or 4–6 cm difference), or severe (more than 40% volume or more than 6 cm difference), c) at least stage 1 lymphedema, d) bilateral or unilateral, e) affecting upper or lower limbs. Additionally, for the PLE group, lymphoedema may have appeared at any time during their life and should not be related to cancer. While, for the SLE group, patients with gynaecological or urological cancer-related lymphoedema were included. The exclusion criteria consisted of: (1) the presence of lipoedema, venous oedema, or dynamic oedema; (2) serious systemic and/or psychiatric disorders; and (3) inability to communicate in Spanish or sign the informed written consent.

Data were collected between September 2015 and April 2016. Based on the phenomenological design, in-depth interviews (unstructured and semi-structured) were used. With the first 12 participants, an unstructured interview started with an open question: ‘What is your experience with lymphoedema?’. Then, the researchers listened carefully, noted the keywords and topics identified in the patients’ responses, and then used the participants’ answers to ask additional questions and clarify the content of the answers.9 In this manner, relevant information was collected from the patients’ perspective. An initial analysis of information was performed on the information gathered from the unstructured interviews of the first 12 participants. This analysis revealed relevant topics that required further study, thus requiring a second stage of data collection. This second stage, done with 7 participants, used semi-structured interviews based on a question guide (Table 1) that aimed to elicit further information regarding specific themes and topics of interest.9,15,24 In total, 19 in-depth interviews were conducted by AGR and FMR. Participant recruitment finished when there was repetition in the information obtained from the interviews.15,24 All interviews were tape-recorded.

First, a complete and literal transcription of each interview and the researchers’ field notes was drafted. Subsequently, an inductive thematic analysis of the data was conducted by three researchers (ARG, FMR, DPC).24–26 Findings from qualitative data may be derived inductively—that is, obtained gradually from the data. This process began by pinpointing the most descriptive content to obtain meaningful units.24–26 Then, groups of meaningful units were created based on similar points or contents, allowing the emergence of topics (themes) describing the patients’ experience. To identify the relevant content, researchers read the data twice.9,25 In this manner, an increasing level of abstraction and complexity was established for the analysis from meaningful units to themes.9,25 This process of inductive analysis was conducted separately for each interview. Also, this process of analysis was conducted separately in interviews of the participants affected by PLE and SLE. In the end, a matrix was constructed with the integrated results from participants with both types of lymphoedema.25 The results of the analysis were then combined during team meetings, in which the researchers met to discuss the data collection and analysis procedures.24–26 No qualitative data analysis software was used. Microsoft Excel (v. 2013) was used for descriptive statistics.

We used the criteria of Lincoln and Guba28 (Table 2) to establish the trustworthiness of the data.9,27 The study was approved by the Rey Juan Carlos University Clinical Research Ethics Committee (protocol number: 180120160116) and performed following the Code of Ethics of the World Medical Association (Declaration of Helsinki) for experiments with humans.29 Data were treated anonymously and confidentially. All the participants provided written informed consent.

The first theme is related to the psychological aspects of living with lymphoedema; patients deal with a constant psychological challenge. This theme contains two subthemes: bad feelings and facilitator elements.

Bad feelings are explained because life with lymphoedema is difficult, which leads patients to feel frustration, physical and psychological suffering, lack of understanding, and problems related to self-image or compression garments. A lack of understanding and empathy is the main characteristic described by the participants. Also, individuals with SLE have often undergone breast surgery, meaning that the scar is a constant reminder of their cancer. They may have not initially considered this issue important, being unaware that it has significance.

In contrast, patients with PLE feel that they are inequalities in the received treatment. They perceive that they have fewer rights and a lack of clinical care compared to those with SLE.

The participants narrate the following as facilitator elements: exercising in water, promoting an adequate healthy diet, performing physical therapy or rehabilitation treatments, and meeting someone who also has lymphoedema. The use of the internet as a consulting tool and new technologies sometimes help some patients, while for others, the lymphoedema images may be too shocking. Patients with PLE and SLE both commented that not overthinking lymphoedema helps them not to obsess and enables them to coexist with the condition.

Patients with SLE place a higher value on life after overcoming cancer for a long time. They tend to downplay this, but value the little things more intensely (eg, daily pleasures that may normally go unnoticed). Being a survivor and being able to talk about it years later, as well as being healthy, generates a positive attitude in the present.

The second theme identified contains the following subthemes: uncertainty, acceptance, involvement, and responsibility. All interviewed patients understand the need to adapt and share the responsibility of improving their QoL, but all speak of difficulties with this task.

Uncertainty was cited because living with lymphoedema is similar to being on a roller coaster. Fear and doubts are related to volume increases, infections, and images on the internet. Almost all patients are afraid of the unknown related to this condition. Patients make mistakes due to lack of information about the problem at the onset of this disorder. Patients with PLE are afraid of worsening, mostly due to a volume increase and infections. Women fear pregnancy because of the lack of information about how it may impact their lymphoedema. In contrast, patients with SLE also have a fear of cancer recurrence and reconstructive surgery.

Lymphoedema is a chronic condition that usually requires lifelong management, and it is necessary to accept changes and acknowledge the new condition as soon as possible. The longer the patients accept their lymphoedema, the more normalised is the situation. Patients pursue changes because of the diminished QoL. There are no differences described between patients with PLE and SLE; however, based on our data, patients with PLLL and SLLL have the worst QoL (compared to those with PULL and SULL) and typically have greater adherence to treatment.

Participants’ narrations show how each person generates their maintenance strategies according to the knowledge of oneself and their own lymphoedema. Thus, participants with PLE narrate having more involvement than those with SLE. However, the real differences are between lymphoedema of the upper versus the lower limb because they are held more accountable and report more difficulties with compression garments; they cannot afford temporary lack of use of these garments.

This theme has three subthemes: diagnosis, prevention, and treatment. Our participants explain that it is difficult to get a definitive diagnosis and that it is often necessary to visit many different specialists. Diagnostic results are delayed and not always conclusive. Also, for prevention, there are errors and previous information sometimes is inaccurate. All participants mentioned that there is generally poor information about the disease and consequently about an accurate diagnosis and early preventative care. Accurate information and additional specialists are needed. Basic information such as the influence of heat on lymphoedema is also often not provided to patients.

Patients with SLE do not understand why they had not been advised lymphoedema and its importance. They did not receive any early information about prevention or at least not at the right time. However, it is not clear when this information should be provided. Most patients agree that if they had been informed, they would have acted differently, and believe that it would have prevented many complications.

Both PLE and SLE groups consider it important to receive early treatment by rehabilitative doctors and specialised physical therapists, but this treatment is usually expensive. They recognise CDT as a practical approach to lessen the manifestations of lymphoedema and to reduce the recurrence of infections. Compression garments are an essential part of treatment (more important for lower limb lymphoedema). Physical activity and exercise is safe and recommended, and nutrition is important, but not all patients control their diet. Some patients with SLE may have dietary restrictions due to cancer.

First, the qualitative nature of this study meant that the focus was on describing the experiences of the participants and, therefore, these findings cannot be generalised. Second, the experience reported here may also be related to the participant's age. For example, young people with PLE struggle with their self-esteem and lifestyle restrictions,14 and these aspects did not emerge in our results. Similarly, the themes that emerged from our sample, composed of both males and females, may differ from those studies that consider just one gender in their sample. Gender-related differences have already been reported to impact the personal experience related to several pathological conditions.59,60 Greenslade and House interviewed only women with lymphoedema and reported aspects that did not emerge in the current results; loneliness and huge sense of isolation.47