Integrative model for self-perception of well-being in cancer

Depósito de investigación de la Universidad de Sevilla https://idus.us.es/ Esta es la versión aceptada del artículo publicado en: This is a accepted manuscript of a paper published in: Disability and rehabilitation (2023): 11 Junio 2023 DOI: https://doi.org/10.1080/09638288.2023.2222645 Copyright: El acceso a la versión publicada del artículo puede requerir la suscripción de la revista. Access to the published version may require subscription. “This is an Accepted Manuscript of an article published by Taylor & Francis in [ Disability and rehabilitation] on [11 junio 2023], available at: [ https://doi.org/10.1080/09638288.2023.2222645].” 1 INTEGRATIVE MODEL FOR SELF-PERCEPTION OF WELL-BEING IN CANCER Javier Martinez-Calderon a,b , María Jesús Casuso-Holgado a,b , Francisco Javier Cano- Garcí ac and Alberto Marcos Heredia-Rizo a,b a Departamento de Fisioterapia, Facultad de Enfermería, Fisioterapia y Podología, Universidad de Sevilla, Sevilla, Spain; b Uncertainty, Mindfulness, Self, Spirituality (UMSS) Research Group, Sevilla, Spain; c Departamento de Personalidad, Evaluación y Tratamiento Psicológicos, Universidad de Sevilla, Sevilla, Spain 2 Abstract Background: Living with cancer can lead to experience continual illness uncertainty that can affect how people perceive and interpret their well-being. Mindfulness, acceptance, self-efficacy perceptions, meaning and purpose in life may be positively involved in the management of disruptive thoughts and emotions that can emerge during the experience of cancer. Aim: A narrative review was developed to evaluate the role that mindfulness, acceptance, self-efficacy perceptions, uncertainty, meaning and purpose in life play in the self-perception of well-being in individuals with cancer. The second objective was to posit a conceptual model integrating all these factors with clinical applications for oncology care. Methods: An unsystematic search was conducted in PubMed explore cancer research that justifies the study aims. Results: An integrative model for selfperception of well-being has been proposed. This model integrates current evidencebased findings and provides clear principles for clinicians and researchers. This integrative model proposes that mindfulness, acceptance, self-efficacy perception, and uncertainty can predict how people with cancer self-perceive their well-being. The model also posits that meaning and purpose in life can act as mediators or moderators of this prediction. Conclusions: This integrative model involves the multidimensionality of human beings and facilitates the understanding of some key factors for the design of therapeutic approaches such as Acceptance & Commitment Therapy or Meaning- Centered Psychotherapy. Keywords: affect; cancer; cognition; mindfulness; self-concept; spirituality; uncertainty; well-being. 3 Introduction Illness uncertainty affects how patients with cancer and their caregivers face the course of the disease [1]. The evaluation of the experience of cancer can be associated with the way in which uncertainty is assessed and interpreted. Some individuals see their illness as an opportunity to start from scratch, whereas for others cancer is a source of psychosocial distress that lead to demoralization and procrastination. Unfortunately, the progression and the prognosis of cancer is often unknown. This favors uncertainty is evaluated as unpleasant and intolerable. In this context, it is understandable why some individuals succumb to fear of cancer recurrence, stigma, loneliness, and demoralization. All these factors may harm how patients self-perceive their well-being. Some cognitive and spiritual factors are known to help people to stay focused on the bright side of their lives despite illness. These factors can increase resilience and facilitate the development of proactive behaviors. For example, mindfulness practice helps individuals to observe and detach from their thoughts and emotions, allowing them to embrace the present moment [2]. The acceptance of the illness can facilitate a higher psychological flexibility to unwanted experiences [3]. Self-efficacy perceptions can increase the perseverance to achieve meaningful life goals despite the illness [4]. Living a spiritual life provides individuals a framework for searching and finding their meaning and purpose in life [5]. All these factors may guide patients with cancer to see their illness with a higher openness, which may be beneficial to have a better self-perception of their well-being. To our knowledge, there is no synthesis of evidence that reviews the combined role that mindfulness, acceptance, self-efficacy perceptions, uncertainty, meaning and purpose in life play in the experience of cancer. Therefore, the aim of this work was to develop a narrative review to evaluate the impact of t these factors in the self-perception of wellbeing in individuals with cancer. The second objective was to posit a conceptual model integrating all these factors with applications for clinical oncology. Definition of subjective well-being 4 Comfort, quality of life, and well-being are terms often interchanged in health research, without a clear justification. This could have negative repercussions on the clinical setting [6]. Some concept analyses have proposed that comfort and well-being could be synonyms [6]. Similarly, quality of life and well-being have been considered the same construct [7]. However, all these factors show different attributes despite being interrelated [6]. Comfort is particularly used in nursing practice. It is characterized by a feeling of care, safety, strength, and support. Quality of life refers to how people interpret the way in which their current health status affects their daily tasks. This cognitive appraisal is based on attributes such as self-perceived autonomy. Well-being is mainly associated with cognitive, emotional, and spiritual aspects. It includes attributes such as self-perceived happiness or sadness [8]. Well-being can be classified as evaluative, hedonic, or eudaimonic [8]. In essence, these categories show how people label their lives (satisfactory vs. unsatisfactory), the emotions they experience, and the meaning, purpose, and value of their lives [8]. However, the concept life satisfaction can imply an objective and/or subjective appraisal. Therefore, this term should be cautiously considered as part of well-being or quality of life. Additionally, meaning and purpose in life could be used as the spiritual dimension of well-being. However, both constructs may have sufficient weight to be chosen as unique constructs, to not include them as part of eudaimonic well-being. In the meantime, clinical oncologists and cancer researchers can use self-reported questionnaires to assess subjective well-being in overall terms. For example, the subscales from the Functional Assessment of Cancer Therapy (FACT), the Positive and Negative Affective Schedule (PANAS); the Subjective Happiness Scale (SHS); and the Satisfaction with Life Scale (SWLS). Is it needed an integrative model for self-perception of well-being in cancer? The number of conceptual models covering the role of cognitive and spiritual factors in chronic diseases is scarce. Some frameworks have included mindfulness, acceptance, 5 self-efficacy perceptions, or uncertainty as relevant factors (see Table 1). However, none of them have posited whether these factors should be integrated in a unique conceptual model to improve the self-perception of well-being. The Extended Mindfulness-to- Meaning Theory addressed mindfulness as a potential factor to foster health, resilience, and self-transcendence to better face chronic pain with or without the presence of addictive behaviors [9]. Mindfulness was also proposed as a potential mechanism to alter chronic pain-related outcomes by the Theoretical Model for Mindfulness-Based Pain- Management [10]. The Individual and Family Self-Management Theory [11] and the Motivational Model of Pain Self-Management [12] stressed the importance of selfefficacy perceptions to develop proactive self-management behaviors in chronic diseases [11], or particularly, in chronic pain [12]. The Psychological Flexibility Model for Chronic Pain [3], and the Uncertainty in Illness Theory [13] included acceptance of pain and uncertainty, respectively, as factors that affect the way in which individuals manage their chronic symptoms. The Logical Meaning-Centered Model of Cardiovascular Diseases posited that meaning-centered coping skills are needed to improve outcomes associated with a possible reduction of the risk of cardiovascular events [14]. Unfortunately, no integrative models have been developed postulating the role of all these factors for self-perception of well-being in cancer. Cancer research on mindfulness, acceptance, self-efficacy perceptions, meaning and purpose in life, and uncertainty has exponentially grown in the last two decades. Therefore, a conceptual evidence-based model that integrates the possible relationship among these cognitive and spiritual factors seems plausible. This model can help to show whether cancer research on this topic is following a coherent framework and to foster effective guidance for clinical oncology. An integrative model for self-perception of well-being This integrative model aims to offer an easy and effective framework for cancer research and clinical oncology [3]. Our intention was to build an evidence-based model that is 6 simple to follow for those clinicians who daily work with patients with cancer. The model proposes that cognitive and spiritual factors can be essential for self-perception of wellbeing in people living with cancer. Specifically, the model posits mindfulness, acceptance of the illness, self-efficacy perceptions, and tolerance of uncertainty as protective factors that are associated with or predict better self-perception of well-being. On the other hand, the model also hypothesizes that the lack of these factors can favor that patients with cancer have a worse self-perception of their well-being. Meaning and purpose in life are proposed as potential mediators or moderators of the relationship between these cognitive and spiritual factors and how well-being is self-perceived (Figure 1). Figure 2 graphically represents the possible role of these factors in a patient with cancer. Why should these cognitive and spiritual factors be incorporated in the model? Mindfulness Mindfulness is a process of meta-awareness that has been mainly explored as a state, e.g., a temporary condition, or as a dispositional/trait, e.g., a stable feature. This factor is often characterized by describing with words our inner states, observing our internal and external experiences, acting with awareness, and avoiding the reaction and judgment to our thoughts and emotions [15]. Mindfulness allows us a better understanding when our psychosocial patterns are disruptive, helping us to stay in the present moment [2]. Mindfulness may modulate brain regions that seems to be involved in how individuals self-perceive their well-being [16]. Specifically in cancer research, mindfulness has been cross-sectionally associated with better emotional well-being in specific [17] or heterogeneous [18] types of cancer. Furthermore, preliminary evidence has found that mindfulness may be a predictor of better well-being after applying a yogabased intervention [19]. Mindfulness has been also associated with other factors of the model. For example, mindfulness and acceptance of breast cancer have been positively associated [20]. Mindfulness and self-efficacy perceptions were related in patients with breast cancer [21]. Finally, the relationship between mindfulness and meaning in life has 7 been observed in individuals with different types of cancer [22]. Clinicians can assess this factor using self-reported questionnaires such as the Five Facet Mindfulness Questionnaire (FFMQ) [23,24] or the Mindful Attention Awareness Scale (MAAS) [25,26]. Acceptance Acceptance is a cognitive factor that helps us to develop a higher state of awareness and adaptability [27]. Although acceptance and resignation are different constructs, they are interchangeably used, even combined. Acceptance is closely linked to psychological flexibility [3] and can be composed of different facets [28]. For example, acceptance of the reality refers to acknowledge current situation, e.g., cancer, without idealizing or denying it. The capacity to adapt and learn from the present is known as valuing change. When aversive thoughts and emotions appear during cancer, letting go of control can allow us to detach from them. Despite the course of cancer, behavioral engagement fosters the perseverance needed to participate in meaningful life goals. Acceptance of cancer seems to be important to improve emotional and spiritual well-being in people with advanced cancer, even when they are aware of their prognosis [29]. In breast cancer, higher acceptance of the illness was associated with higher levels of mindfulness [20]. A higher acceptance of pelvic cancer was related to greater self-efficacy perceptions [30]. Additionally, a recent systematic review has found that the acceptance of cancer is positively associated with meaning in life [31]. Clinicians can assess the level of cancer acceptance using self-reported questionnaires such as the Chronic Pain Acceptance Questionnaire (CPAQ) [32] or the Acceptance of Illness Scale (AIS) [33]. Self-efficacy perceptions Self-identity is composed of self-concept, self-esteem, self-image, self-determination, or self-sufficiency, among others. This large list of self-states is dynamic and can change during the progression of cancer [34]. Self-efficacy perceptions are commonly assessed in cancer research. Self-efficacy perceptions refer to the belief that one can execute a 8 specific activity and achieve the desired outcome despite hindrances [4]. This factor mainly flourishes through four sources of information, namely mastery experience; emotional and physiological responses; verbal or social persuasion; and vicarious experience [4]. Mastery experience increases or reduces how individuals perceive their efficacy through the lessons provided by their behaviors i.e., performance exposure. The ability to feel certain emotional and physiological states can help to better know and alter those emotional and bodily responses that can be disrupted. TContinual proactive verbal or social feedback can lead people to believe that they can persevere and succeed in specific activities. Finally, people can learn and value their abilities to execute an action through the observation of others. An integrative review has concluded that higher self-efficacy perceptions are related to better physical and emotional well-being in different types of cancer [35]. As previously stated, greater self-efficacy perceptions have been associated with high levels of mindfulness in breast cancer [21] and more acceptance of the illness in pelvic cancer [30]. On the other hand, self-efficacy perceptions and illness uncertainty seems to be unrelated in breast cancer [36]. Clinicians can assess self-efficacy perceptions using self-reported questionnaires such as the Symptom-Management Self-Efficacy Scale-Breast Cancer (SMSES-BC) [37] or the Cancer Survivors' Self-Efficacy Scale (CSSES-K) [38]. Uncertainty Uncertainty is part of human existence. However, some individuals may have difficulties handling the fear of the unknown, perceiving uncertain situations as unbearable [39]. The presumable attributes of uncertainty are the probability, the temporality, and the perception of a specific stimulus. Uncertainty can be nurtured by previous experiences, the way in which uncertainty is evaluated and managed, and the available resources to adapt ourselves to uncertain situations [13]. Within the concept of uncertainty, intolerance of uncertainty refers to dispositional incapacity to endure the aversive 15 References 1. Guan T, Qan’ir Y, Song L. 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