Breast cancer patient experiences through a journey map: A qualitative study

Abstract

Background Breast cancer is one of the most prevalent diseases in women. Prevention and treatments have lowered mortality; nevertheless, the impact of the diagnosis and treatment continue to impact all aspects of patients’ lives (physical, emotional, cognitive, social, and spiritual). Objective This study seeks to explore the experiences of the different stages women with breast cancer go through by means of a patient journey. Methods This is a qualitative study in which 21 women with breast cancer or survivors were interviewed. Participants were recruited at 9 large hospitals in Spain and intentional sampling methods were applied. Data were collected using a semi-structured interview that was elaborated with the help of medical oncologists, nurses, and psycho-oncologists. Data were processed by adopting a thematic analysis approach. Results The diagnosis and treatment of breast cancer entails a radical change in patients’ day-to-day that linger in the mid-term. Seven stages have been defined that correspond to the different medical processes: diagnosis/unmasking stage, surgery/cleaning out, chemotherapy/loss of identity, radiotherapy/transition to normality, follow-up care/the “new” day-to-day, relapse/starting over, and metastatic/time-limited chronic breast cancer. The most relevant aspects of each are highlighted, as are the various cross-sectional aspects that manifest throughout the entire patient journey. Conclusions Comprehending patients’ experiences in depth facilitates the detection of situations of risk and helps to identify key moments when more precise information should be offered. Similarly, preparing the women for the process they must confront and for the sequelae of medical treatments would contribute to decreasing their uncertainty and concern, and to improving their quality-of-life.

A Digital Cancer Ecosystem to Deliver Health and Psychosocial Education as Preventive Intervention

“…Hongru Lu et al [ 38 ] also pointed out that doctors do not pay enough attention to the emotional pressure that patients feel during the diagnosis and treatment, remarking the need to address this kind of information. This finding agrees with the literature regarding the high rates (30–60%) of cancer-related distress after a BC diagnosis [ 7 , 41 ], and the few of them (fewer than 30%) receiving psychosocial care [ 41 ].…”

“…After cancer diagnosis, patients’ information needs are broad; there is a significant level of adjustment [ 45 ] and they are interested in the diagnosis, treatments, side effects, finances, and strategies for coping with social and emotional aspects [ 46 ]. Furthermore, the moment of diagnosis is surrounded by a high emotional impact that entails an emotional whirlwind, which must be managed gradually [ 7 ]. This situation could explain the high number of emotional resource views, especially as a major need from the beginning.…”

“…First of all, in many situations this timing coincides with breast reconstruction. Secondly, it is also the time when patients must prepare to return to “normality” [ 7 ]. Finally, physical concerns may appear once the most threating aspects of the illness are diminishing.…”

“…In effect, a diagnosis triggers a complex set of implications, such as coping with the new situation, managing physical symptoms, re-adjusting the relationship with the family, and dealing with the existential dimension of the illness. Moreover, such impacts can be observed both in the short and medium term after diagnosis [ 7 ]. The management of the illness and treatment side effects increases stress and uncertainty; anxiety, pessimism, and depression; physical pain, discomfort, and social isolation; which overall diminish the quality of life of BC patients [ 8 , 9 , 10 ].…”

Stoic attitude in patients with cancer from the NEOcoping study: Cross-sectional study

“…Stoicism and emotional distress (anxiety, depression, and somatization) may interfere with coping by increasing anxious preoccupation [ 10 ]. Dispositional optimism may act as a resource that maintains a positive mood, provides a more flexible coping style to face with the inability to control stressful stimuli, and protects patients from the possible negative effects of cancer treatment and cancer itself in case of recurrence [ 11 , 12 ]. Likewise, social support, defined as the perception that others are willing to help, appears to operate similarly to optimism and is a critical factor in decreasing negative psychological affect in individuals with cancer, which can contribute to better adjustment to the disease [ 13 ].…”