Chronic illness self-care and symptom recognition patterns in patient–caregiver dyads

This invited commentary refers to ‘Dyadic symptom recognition in heart failure’ by G. Locatelli et al., https://doi.org/10.1093/eurjcn/zvaf051 Managing chronic illnesses is a global challenge that brings heavy burden for patients and families within our societies. Heart failure (HF) is one of the most impactful chronical illnesses, where patients face daily challenges with their self-care, in part due to their inability to be aware of changes in their underlying condition.1 The recognition and behaviours in response to symptoms are critical for effective HF self-care. The processes of detecting and responding to bodily changes as symptoms and the many challenges patients and their families face in these aspects of self- and family-care can be analysed from two different yet complementary theoretical backgrounds. In the Theory of Self-Care of Chronic Illness, symptoms have been integrated as key in the processes of self-care, and have been described as both antecedents and outcomes of self-care, making the awareness of the symptoms central to the process of self-care.2 The Theory of Dyadic Illness Management describes patient and care partner responses to illness that go beyond individual actions and focuses on the dyad as the unit of focus and analysis. That is, both members of the dyad are involved directly with appraisal of illness by assessing and interpreting the patient’s symptoms (i.e. dyadic appraisal) and in the management of HF (i.e. dyadic management).3 Importantly, dyadic appraisal and dyadic management are viewed as reciprocal in nature as each influences the other meaning that dyads who are on the same page in terms of appraisal of the patient’s symptoms are more likely to be collaborative in their dyadic management of HF. Locatelli et al.4 conducted a recent secondary analysis of data from a trial assessing symptoms and dyadic appraisal, adding to established literature that the appraisal of symptoms is frequently a shared task in HF and influenced by the interaction between the patient and caregiver. The study of HF symptoms in a dyadic context needs additional clarification. First, symptoms by definition are subjective and therefore, if they are not perceived or recognized, they are not symptoms. As such, although terms like ‘symptom perception’ or ‘symptom recognition’ are getting at something very important—patients’ ability to detect underlying changes in their pathophysiology as symptoms—they are inaccurate terms. We have to be much more careful about terminology used in our theories and research in this area. Second, because symptoms by definition are subjective, the perspective of care partners is complicated. Indeed, there are symptoms that may be more visible to care partners like dyspnoea that may have outwardly observable signs like increased labour or rate of breathing or inability to speak. In contrast, there are symptoms that may be less visible to care partners such as pain intensity or depressive symptoms. Moreover, much of a care partners ability to appraise a patient’s symptoms accurately comes down to how they are communicating with one another and there are well established barriers to communication in HF dyads including poor relationship quality5 and concealment.6 In the Theory of Dyadic Illness Management, the term ‘dyadic appraisal’7 was used to describe the process in which patients and their care partners assess the patients’ symptoms, and that term was used to get our science beyond the older convention of accuracy in assessment and proxy evaluation of symptoms.8 One frontier mechanism that may be at play in the finding of Locatelli and colleagues is interoception. We typically think of interoception as two-way mind-body mechanism that is critical for body regulation and chronic illness management at the level of the individual.9 In chronic conditions like HF, where symptoms may be ambiguous or progress gradually, the ability to listen to bodily signals is a critical link between symptoms and individual self-care behaviours in chronic cardiovascular disease.10 But, interoception may be influenced by external factors, such as social connectedness.11 This brings us to the level of dyadic involvement and interaction as they may impact interoception of both members of the dyad in their ability to appraise the patient’s symptoms. Further research should include studies on the understanding of how interoception could be viewed as a dyadic phenomenon, and how interoception influences dyadic appraisal. Locatelli et al.4 found that cognitive impairment and high symptom burden predicted membership in concordant dyads. Whilst this might seem counterintuitive, it can be reflecting patients reliability and confidence on care partners, who have had to become more attuned to the patient’s condition.12 In contrast, subtle or early symptoms may be more easily misinterpreted or overlooked. This will be particularly relevant if one of the dyad persons has reduced interoceptive sensitivity, which may contribute to failure to recognize even major changes in underlying pathogenesis, and is quite common within persons with chronical illness as per the patients in the sample.13 This finding also aligns with the demographic characteristics of the caregivers from the study, as they were mostly female, younger, still working, and either spouses or adult children. As level of concordance was linked with non-spousal caregiver and with higher caregiver preparedness, this may suggest that emotional proximity may not always link with better symptom recognition. Although the concordant dyads were predominant, what can reflect and effective communication and a shared appraisal of illness, it is relevant to consider the discordant dyads and their possible associations with caregiver associated factors, cognitive impairments, caregiver burden, and other factors. Although relatively small, the growing body of knowledge on dyadic HF evidences the need for novel approaches, as dyadic research warrants methods that are equally as complex as research questions related to the dyad as the unit of analysis.14 Similarly, the implications of the Locatelli et al.4 study reflect the need for a better understanding of dyadic interactions and how they influence self-care and illness management. Moreover, this study creates awareness on the need for tailored care with a dyad-centred care approach without forgetting the need to address how symptom recognition mechanisms are triggered and how they work and how they can be improved,4 with focus on the dyad as the unit of concern and analysis. Ana Filipa Gomes (Conceptualization [lead], Writing—original draft [lead], Writing—review & editing [equal]), Margarida Vieira (Writing—review & editing [equal]), and Christopher Sean Lee (Writing—review & editing [equal]) No funding.