Seeking healthcare at their ‘right’ time; the iterative decision process for women with breast cancer

We conducted a phenomenological study using a descriptive qualitative design among breast cancer patients accessing care at the breast clinic of the Komfo Anokye Teaching Hospital (KATH), Ghana, from May 2015 to March 2016. Komfo Anokye Teaching Hospital is a 1300-bed capacity tertiary hospital that provides surgical, chemotherapy, and radiotherapy treatment for breast cancer. The Hospital has a dedicated breast care centre where women with breast symptoms are first seen. All decisions on breast cancer treatment are taken by an interdisciplinary tumour board comprising surgeons, oncologists, pathologists, radiologists, nurses, and social workers.

We purposively recruited fifteen (15) women presenting for the first time to the breast clinic of KATH with breast disease clinically suggestive of Stage III or IV breast cancer as defined by the American Joint Committee on Cancer [40]. The clinical stage was determined by the attending physician based on history, physical examination, and prior laboratory or radiological investigations the women may have done. These women would have invariably observed overt changes in their breast during the period before seeking care at KATH breast clinic. Eligibility also included reporting to KATH breast clinic at least 3 months after identifying the symptom. Age was not a limitation to inclusion. Women who were too frail, such as those who were visibly tired out after the routine clinical consultation and examination were not approached for interviews. The clinic nurse approached eligible participants face to face and explained the study and its purpose to them using the participant information leaflet. Women who voluntarily expressed their interest to participate were directed to contact the researcher in person. Two eligible women declined participation, one due to how the interview time will affect her travel schedule and the other because she felt anonymity had been breached by the researcher referring to her by her name during the interview.

Each participant signed a written Informed consent prior to her interview. Each of the in-depth interviews was conducted in a private room in the breast clinic at KATH by AEA, who was a PhD candidate at the time. The interviews were guided by open ended questions to explore how the women noticed their breast symptoms; how the symptom had evolved since; the experiences that influenced their decision to seek medical care and the activities they had undertaken until arriving at the breast care center. In order to promote a dialogue that could explore their responses, the questions were used flexibly and the order adapted and elaborated to suit each interview context [41]. Data saturation was reached by the 14th interview and confirmed with 15th. The interviews, which were audio recorded, were conducted in the local dialect of Twi and translated into English during transcription. Each interview lasted for about 40–45 min. Back-translation was used reiteratively during the transcription and analysis process to ensure the meaning of the original responses was not lost [42].

The data was coded and analysed using a deductive thematic approach with priori themes guided by the Andersen Behavioural Model of Health care utilisation [43]. The Andersen Behavioural Model describes the determinants of health service use to include individual characteristics such as demographic factors, cultural norms, education, occupation, social relationships, health beliefs, personal and family income/wealth, individual-perceived need for health care; and health service factors such as cost and accessibility to care, and patient’s satisfactions and perception of the care provided.

The time from symptom identification to reporting to KATH ranged from 4 to 24 months.

Six (6) women had their first contact with a health facility less than 3 months after identifying their symptom. The initial contact for all the women was with a non-specialist physician. The referral to KATH was not straightforward for all the women. Some of them saw up to 3 other physicians, including travelling to other towns for diagnostic investigation before presenting to the KATH breast clinic.

The time it took to navigate the course from the point of initial healthcare contact to KATH was closely linked to their economic, family and social roles as women. Some economic and sociocultural activities were prioritised ahead of seeking care for the breast. For example, some deferred hospital appointments in order to work for more money; some prioritised treatment for other illnesses perceived to affect their functionality; and others prioritised taking care of an ill child over their own health.

“I had heard about breast disease so even though it was not paining me I had to do something about it…..but it was not worrying me and we had entered the Christmas season too so I wanted to work a little more” [Int. 12]

“It has been swollen for over a year, I did not do anything about it…. I was seeing the doctor monthly for my hypertension medication” [Int. 6]

“The child’s illness was more serious and so I had to take care of him first, I didn’t consider mine as that serious” [Int. 3]

The availability of money to pay for care and diagnostic investigations also significantly influenced the time taken to navigate the referral pathway.

“You see, by the time I was discharged about my leg problem, I had no money on me that is why it took me so long” [Int. 5]

“By the time we got to the regional hospital, all our money was finished so the doctor asked us to go back home and mobilise some money for the tests.” [Int. 14].

“Well I wanted to come but the money issues, the money issues” [Int. 2]

Even when money was available, it was prioritised for other economic, social or family use.

“Recently too I had gone to pay school fees for two of my children so the money I had, if I came, (it) was not enough” [Int. 15]

The women did not seem to have any problems with their health seeking journey. They believed their decisions and the timing of their actions taken was justified; it could not have been any other way. At the time they had decided to seek medical care, the breast symptom was a singular priority, and nothing was considered a hindrance.

“Well the time I felt the pain I did not delay, I went to the hospital. They gave me a referral on Tuesday, only Wednesday passed and I travelled here on Thursday. I am okay with how things have gone” [Int. 15].

“I am pursuing this because of the children, if I die they will become miserable” [Int. 9]

“Well if you want good for yourself you must spend money” [Int. 7]

“I was not bothered about coming here because I want my good health back” [Int. 3]

“The distance is far but if it will help me then there is no problem” [Int. 12]

Essentially, while deferring healthcare was related to ability to perform economic, family and social roles, pursing healthcare was also for the same economic, family and social reasons or goals.

Breast symptoms that interfere with daily activity or function is a significant factor in deciding that breast disease is serious and needs medical attention [18, 39]. As observed in this study, it is not the physical characteristics of a breast symptom, but how it affects a woman’s function that provokes health seeking. This suggests that the breast symptom is not appraised as an isolated entity, but with regard to its effects on different aspects of a woman’s functionality. How the breast symptom interrupts economic, family and social function is an important factor in defining disease severity and the need for urgent medical attention. The mere presence of the breast symptom may not be alarming enough until it is perceived as a threat to, or actually impacts, functionality.

Breast cancer campaign messages in Ghana generally encourage screening, especially self-breast examination for early signs of breast cancer, and where detected, to immediately seek medical care. The general expectation is that appraisal of a breast cancer symptom should culminate in the decision to seek treatment, and this health seeking action is again anticipated to be immediate – without delay. Reasonably, the responsibility to appraise breast symptoms and follow through to seek medical attention cannot be taken away from the individual. This desired health seeking behaviour has been communicated in diverse ways. In spite of this, delayed health seeking persists. However, having knowledge does not necessarily guarantee timely health seeking behaviours. From their exploration of the cultural model of breast cancer among low-income African American women, Barg and Grier [44] attribute this phenomenon to the different cultural beliefs and experiences that exist about breast cancer. Thus, the intended cognitive and affective response expected from general education on breast cancer may be different from the actual meaning generated during a woman’s interpretation of the message [44]. Even where the intended and actual meanings are congruent, Granek and Fergus [45] in their discussion of issues of agency and liminality associated with women’s symptom appraisal and help-seeking behaviour upon discovery of a breast symptom, assert that women who are not ready to present their breast symptoms to a physician remain ‘deliberately ignorant’ of it because they have other areas in their life that needs attention and that are not hindered by the threat of breast cancer, or the early symptoms of breast disease. Whilst this assertion may be true in some cases, the findings from this study suggest that women are not necessarily deliberately ignorant. Rather, they remain aware of their symptoms but make active choices of prioritising other areas in their life needing attention until such time that seeking care for their breast symptoms is the means to achieve those other previously prioritised choices. In other words, when their perceived priorities are latterly threatened by the breast symptom, seeking medical attention to treat the breast symptoms becomes a means to ensure that those previous priorities are maintained or restored. The decision-making process of health seeking is thus part of an ongoing iterative priority setting process, the ultimate goal of which is to maintain important economic, family and or social function.

Breast cancer treatment tends to be offered in specialised centres. Referrals are therefore necessary for many women on the health seeking journey. For the women in this study, referrals were not just for treatment but also for investigations to establish diagnosis. This journey translates into time, money and the use of other resources, competing with daily efforts to maintain their economic, family and social functions. When resources are limited, the decision to commit any of these resources to health seeking is further delayed, especially when the symptom is not perceived a threat to function. Already existing narratives about the cost burden and time consuming nature of breast cancer care further worsen this inertia. Even when the health seeking journey has been initiated, activities such as diagnostic investigations may be deferred as economic, family or social goals come up and compete for resources.

Probably, a clear understanding of the false economy of delaying treatment in competition with the very economic, family and social goals they hold so dear could have led to different health seeking choices and this should feature prominently in breast cancer education.

There was likely some recall bias as the women were recollecting activities that had occurred several weeks to months prior to arriving at the breast clinic.

Interview transcripts could not be returned to participants for feedback because most of them could not be traced. This could potentially affect rigour. However, immediately after each interview, a quick recap of the interview was always fed back to the interviewee before closing off the interview.

The interviewer’s background as a surgeon who had worked in the breast clinic and with breast cancer patients, and as a researcher with academic interests, may have influenced her qualitative analysis. However, the other authors were at liberty to comment on the qualitative findings.