Design and sample

A qualitative design was chosen, since the purpose of the study was to explore the women’s perceptions and experiences of treatment for mastitis^15,16.

We recruited a convenience sample¹⁷ using a social networking site. ‘Ammehjelpen’ (a breastfeeding assistance service) shared the post, and 33 women contacted the first author via email. Three primiparous women and eight multiparous mothers who received inpatient or outpatient treatment for mastitis within the first year of childbirth were included. All the women breastfed their infant during the period of illness. We focused on women’s experiences with non-medication and pain-relieving interventions for treating mastitis, but also included women who had received antibiotics without focusing on the effect of this. Twenty women were treated solely by a general practitioner and did not therefore meet the inclusion criteria. Two women were excluded because they were selected for surgery at the first consultation. This resulted in a sample consisting of 11 women aged 26–43 years who had received treatment for mastitis in the period December 2016 to December 2017.

Semi-structured individual interviews were used to obtain data. Three of the authors (IKT, SLK, LL) conducted interviews individually in the period February to May 2018. Nine participants were interviewed by telephone and two were interviewed in-person in a meeting room at a public library. The interviews lasted between 11 and 45 minutes (average 35 min), and audio recordings were made, which were transcribed after each interview. The interviews produced rich data that could shed light on the subject of the study, and we chose to stop recruiting participants after we identified a pattern of repetition in the themes that the women described.

An experiential interview guide was used, consisting of four open-ended questions relating to the purpose of the study¹⁵. The questions concerned the women’s experiences of having suffered from mastitis, the help they received when they were diagnosed with mastitis and their reflections related to the help they received. The participants spoke freely about the main issues but were asked questions if there was a need for clarification or elaboration.

Data analysis

Data were analyzed collectively using systematic text condensation (STC), a four-step method for thematic crosscase analysis¹⁷. In the first step (from raw data to themes), the interview transcripts were read by all the authors in order to form an overall perspective. They were then reviewed by two authors jointly to identify preliminary themes. These were discussed by all authors as a group, and agreement was reached. In the next step (from themes to code groups), the interviews were read again and units of meaning, i.e. fragments of text containing information about the research question, were identified in the text and sorted into code groups. According to Malterud¹⁷, the coding process implies marking the meaning units with a code or label, noting their commonalities and differences and sorting them into groups with related meaning. In the third step (from code to meaning), we considered one code group at a time and organized the content into different subgroups describing different aspects of the phenomenon. In this step of the analysis process, the subgroups became the focus of our attention. We reduced the content in each subgroup into a condensate: ‘an artificial quotation maintaining, as far as possible, the original terminology applied by the participants’¹⁷. Finally, in step four (from condensation to descriptions and concepts), we synthesized the condensates into an analytical text. Quotes illustrating the text were included. An example from the analysis process is given in Table 1 and an overview of code groups and subgroups is presented in Table 2.

Ethical considerations

The study was conducted in accordance with the Declaration of Helsinki¹⁸ and considered by the Regional Committees for Medical and Health Research Ethics (REC) to fall outside the scope of the Health Research Act (REK: 2017/2519 A). The study was approved by the Norwegian Centre for Research Data (NSD: 57945).

Prior to the interviews, the participants were sent information letters and consent forms. They were informed that they could withdraw from the study without any consequences for them before completion of the data processing. Participants agreed orally by telephone or in writing by email.

Interaction with healthcare personnel: being treated in a caring manner

Many women felt they were not believed or taken seriously when they contacted a general practitioner, the out-of-hours medical service or outpatient clinic for symptoms of mastitis; and some found that they had to convince healthcare personnel of their condition:

‘I felt that the people I spoke to on the phone the first time belittled me. They didn't think it was mastitis, but I was sure, because I had had it before! They decided to believe me in the end, and then they gave me the information I needed. And it was a bit like, yeah, that's what I said.’ (Participant 3)

In contrast, women who were referred to hospital for further assessment found that they were well taken care of and taken seriously. Several emphasized that personal follow-up helped make the hospital stay a positive experience. One woman described how the interaction with an empathetic doctor and a midwife who cared for her continuously throughout her hospital stay saved her from feeling like a parcel being passed around in the system. However, it was not important who carried out the treatment:

‘There was a wonderful male nurse whose wife had had mastitis. He had helped her to express her milk by hand, so he knew how to do that. He came and helped me, and then he taught the others at work how to do it.’ (Participant 6)

However, several participants found that healthcare personnel were busy and did not understand the condition. Some did not dare to ask for help for fear of being a burden, while others felt they were brushed off when they asked for help, and wondered if they could take more responsibility themselves.

‘But then I also think that I could've been better at asking for help, but it's not always easy to ask for help when you need it.’ ( Participant 10)

Experience of illness: feeling overwhelmed by pain and depending on help

The women said that having mastitis was a terrible experience. The physical pain was not localized only to the breasts, it ran through the entire body. They described how a high temperature and lack of energy led to a general feeling of being unwell, and how they were unprepared for the pain. They wondered why no one had told them that mastitis was so painful and thought there was something wrong with their own pain threshold. The pain also led to tenderness when touched and made breastfeeding difficult:

‘It was much worse than giving birth. It was painful, uncomfortable, it was my whole body … it was like my whole body was… I was dizzy. I had no strength. I had a high temperature, it was terribly, terribly painful.’ (Participant 5)

The women said that pain relief was important, especially heat treatment, which reduced pain when touching and draining the breasts. One of the women said that she felt in her whole body how important it was to express the milk by hand and drain her breasts. Some said it helped to sit in the shower and warm up their breasts before a massage, while others found that warm wraps in the form of rice bags or cotton wadding were effective. They found that heat treatment given in combination with analgesics made it easier to breastfeed their infant and reduced fever and general malaise. Help in correcting the latch or trying out different breastfeeding positions in tandem with the use of analgesics also reduced the pain considerably. However, all interventions required proper guidance and practical help, which could be time consuming:

‘The fact that the midwives sat down and helped me express the milk by hand and that I wasn't left there on my own. But personal follow-up, someone sitting down with me and showing me how to squeeze out the milk by hand, that was the best thing really.’ (Participant 7)

Several participants experienced a mental strain when breast pain made it difficult to hold their infant close to them. They felt guilt about their attachment to the child, especially in cases where it was not long after they had given birth. Being locked in ‘pain hell’ was detrimental to their attachment to the infant, but the women were nevertheless grateful to have their child with them. One woman said it hurt just to move her arms because of the size of her breasts. Taking care of the child was unthinkable:

‘Your head felt completely frazzled, new baby, new life situation and a baby to take care of. Then I couldn't take care of him and it was just sad; a sad feeling where you felt that you couldn't take care of your own baby because you couldn't even take care of yourself.’ ( Participant 8)

The women found that healthcare personnel lacked knowledge about the use of medications. Some had searched the internet on the topic and found information about which medications were compatible with breastfeeding. However, the healthcare personnel had a restrictive approach to the use of medication due to the risk of it transferring to the breast milk, and some were unsure which medications were compatible with breastfeeding:

‘She said that it would be okay for me to take some paracetamol and see if it took away the fever and some of the pain. But warm wraps and a hot shower were sometimes the best relief for pain.’ (Participant 9)

The hospital stay: random factors govern the treatment

At smaller hospitals, the women often experienced being admitted to wards with expertise in women’s health, and felt they received support and guidance from qualified personnel with expertise in the treatment of mastitis. Women who received treatment in maternity wards at larger hospitals described similar experiences, while women who were admitted to infection control wards or wards with spare capacity at these hospitals said that they encountered healthcare personnel with no knowledge, experience or skills in the treatment of mastitis. One woman describes the information she received about the hand expression of milk:

‘How often should I express by hand? They all told me something different. Some thought I should do it every two hours and others thought every three hours, and some thought every four hours. My head was swimming from all the conflicting information.’ ( Participant 4)

Wards also lacked the necessary equipment. A woman was wheeled into an infection control ward in a wheelchair and left to fend for herself despite barely being able to hold her head up. She said her husband had to ask staff to find a bed and a pump. Another woman described how she was left in bed with overly full breasts because it took so long to borrow equipment from other wards:

‘One time it took eight hours from the time my breasts were emptied to the next time they were emptied because they didn't have a pump available. They had to go looking for a pump in another department. It took forever. I lay there and just got worse and worse, and I cried and cried and was in so much pain. Eight hours ….’ (Participant 1)

The women expressed frustration at being moved between different wards, and that the staff they met had neither expertise in the treatment of mastitis nor breastfeeding. Many found that healthcare personnel followed the ward’s treatment procedures without their needs being taken into account, while one woman experienced the opposite:

‘The midwife saw the problem and she acted immediately. She gave me so much advice, so much guidance. She came in her spare time and helped me. She saw how much pain I was in, she saw that I was not being treated as I should have been. She came to see me when she finished her shift. She sat next to me and emptied my breasts. It took a long time but she managed it. The only one who managed it.’ ( Participant 6)

Strengths and limitations

The choice of qualitative design with individual interviews and thematic analysis was appropriate, as a literature search did not uncover previous studies that shed light on women’s experiences with the topic. Nine of the eleven interviews were conducted by telephone at the request of the participants. Although this affected our ability to observe non-verbal communication in the interview situation, the interviews produced rich data that helped to elucidate the subject of the study. One of the interviews lasted only 11 minutes, but nevertheless provided relevant information and was therefore included in the study. Three of the authors conducted the interviews, but used an interview guide to ensure that all women were asked the same questions.

The women lived in different parts of Norway and had received different treatment for mastitis. Eight of the women were multiparous mothers with previous breastfeeding experience, and some also had previous experience with mastitis. Although this strengthens the study, we are aware that experience is a subjective phenomenon and that some of the experiences described happened a year before the interview. The use of social media has probably also led to a somewhat uniform sample, in that only women who were interested in sharing their experiences were included. This may affect the validity of the study¹⁷.

The authors of the article are or have been employed in the specialist health service and have experience in treating this patient group, including pain relief, non-medication treatment and help to ensure satisfactory nutrition to the child. When we decided to explore the topic, we discussed the challenges that our own knowledge of and experiences with mastitis treatment could entail in the design of the interview guide and in the interview situation. We also discussed whether we could risk including participants that we had treated ourselves, and agreed not to interview these ourselves. However, this issue proved to be irrelevant, as participants volunteered from all over Norway.