“…Novels and autopathographies contain valuable information about the ways people with cancer make sense of their illness and treatments. 19 Nevertheless, writing or talking about illness is not viewed favourably within Spanish society, and here lies the difficulty in finding illness narratives of breast cancer; this was seen by us as an opportunity to use our findings to make illness experiences more visible, within the cultural and lifestyle context of Spain.…”
ObjectiveTo explore the lived experience of women diagnosed with breast cancer through the analysis of illness narratives, as an example of a narrative-based medicine approach.SettingSpain.ParticipantsNine narratives stemming from non-fiction books, and six from interviews through online platforms. All participants were cis women and their ages ranged between 34 and 60 years. The inclusion criteria were being a woman and having been diagnosed with and treated for breast cancer in Spain.ResultsThe main topics that appeared on the analysis were: secondary effects of treatment, breast loss and scars, breast reconstruction, long-term effect of treatment, positive attitude, illness as learning and use of language. Although the results of this research are preliminary, it can be said that societal expectations quickly became a burden for the patients. Moreover, there was no common behavioural pattern among the participants and how they chose to manage their cancer journey. Choosing whether or not to hide their baldness, go through reconstructive surgery or fulfil the ‘patient role’ were options they wanted to review based on their own priorities, and not because of external impositions. Even though the women agreed with the benefits of having a positive attitude, they also asked for space to feel rage and sadness, not to be compared with others and to be heard with no haste, as well as to be accompanied beyond the treatment, and for their long-term effects of medications to be validated. The importance of the type of comments and language used is emphasised.ConclusionA narrative-based medicine approach enables us to incorporate the patient experience into the understanding of breast cancer. We encourage clinicians to be aware of the concepts of normality held by women, and to welcome different choices and different ways to experience illness.
“…Novels and autopathographies contain valuable information about the ways people with cancer make sense of their illness and treatments. 19 Nevertheless, writing or talking about illness is not viewed favourably within Spanish society, and here lies the difficulty in finding illness narratives of breast cancer; this was seen by us as an opportunity to use our findings to make illness experiences more visible, within the cultural and lifestyle context of Spain.…”
ObjectiveTo explore the lived experience of women diagnosed with breast cancer through the analysis of illness narratives, as an example of a narrative-based medicine approach.SettingSpain.ParticipantsNine narratives stemming from non-fiction books, and six from interviews through online platforms. All participants were cis women and their ages ranged between 34 and 60 years. The inclusion criteria were being a woman and having been diagnosed with and treated for breast cancer in Spain.ResultsThe main topics that appeared on the analysis were: secondary effects of treatment, breast loss and scars, breast reconstruction, long-term effect of treatment, positive attitude, illness as learning and use of language. Although the results of this research are preliminary, it can be said that societal expectations quickly became a burden for the patients. Moreover, there was no common behavioural pattern among the participants and how they chose to manage their cancer journey. Choosing whether or not to hide their baldness, go through reconstructive surgery or fulfil the ‘patient role’ were options they wanted to review based on their own priorities, and not because of external impositions. Even though the women agreed with the benefits of having a positive attitude, they also asked for space to feel rage and sadness, not to be compared with others and to be heard with no haste, as well as to be accompanied beyond the treatment, and for their long-term effects of medications to be validated. The importance of the type of comments and language used is emphasised.ConclusionA narrative-based medicine approach enables us to incorporate the patient experience into the understanding of breast cancer. We encourage clinicians to be aware of the concepts of normality held by women, and to welcome different choices and different ways to experience illness.
“…In a paper that aims at putting health humanities into a health psychology perspective, I outlined four art forms and their application to healthcare, distinguishing between an active and passive position of the patient, where passive does not necessarily mean that the patient is merely receiving an intervention ( Figure 4 ; Kaptein, 2021 , 2022 ; Kaptein, Hughes, Murray, & Smyth, 2018 ). Figure 4.…”
Section: Behaviour As the Central Outcome In Health Care (Kaplan
...mentioning
Background:
Psychology as applied to health and illness has a relatively short history. Nevertheless, that history shows a rapid development of the theoretical models that guide the field over the past 60 years. Core theoretical approaches are concisely reviewed, in the context of Kaplan’s paper ‘Behavior as the central outcome in health care’ (1990), which is used as a model to examine the extent to which these approaches embrace Kaplan’s notions.
Advances:
Empirical studies from the health psychology domain are used, which demonstrate the gains in terms of quality of life and behavioural outcomes in patients with (chronic) somatic diseases. Over a period of some 60 years, theoretical models and core concepts in psychology as applied to health and illness have evolved from psychosomatic views to neuropsychology, quality of life, patient education, self-management, illness perceptions, patient-reported outcome measures (PROMs), shared decision-making (SDM) and health humanities (HH). The more recent models (SDM, HH) appear to align to a considerable degree with adopting ‘behavior as the central outcome an outcome in health care’; shared decision-making and health humanities focus on encouraging patients to make sense of and give meaning to their illness in order to attain optimal psychosocial adjustment.
Conclusions:
In addition to ‘behavior as the central outcome in health care’, a new definition of the concept of health (i.e. ‘the ability to adapt and to self-manage’ – Huber et al., 2011) seems to favour patients, healthcare providers, society, and health psychology. Incorporating this concept into medical care may be viewed as a challenge for health psychologists – and as a source of continual struggle with strong biomedical forces.
“… Zayas et al, 2006 ), on migraine in Bulgakov’s The master and Margarita) is quite popular in medical journals. Attempts to review how a particular illness is represented in (high) literature, for example, epilepsy ( Wolf, 1999 ) or cancer ( Kaptein, 2021 ) are more ambitious. Finally, comparing the representations of illness in novels with empirical work on patients’ representations of the particular illness combines the literary representation with the empirical image of an illness (e.g.…”
Novels represent a corpus of data that offers innovative opportunities for research and theory in health psychology. This article discusses how adding ‘health humanities’ to health psychology opens up a potentially rich domain for research and clinical application. The concept of ‘health humanities’ is discussed and put into a context of related fields. The concepts of ‘illness perceptions’ and ‘models of patient–health care provider interaction’ are used as illustrations. Applications are given, focusing on patients and their caregivers, health care providers and society at large (bibliotherapy and expressive writing). Suggestions for further development of the area are included.
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