People with illness are involved in their own care on a daily basis, constantly varying care according to the peaks and troughs of their illness experience. Despite people’s important role in self-care, their work remains obscure and under-researched, hence a clearer picture is required of what work patients undertake. This presentation aims to typify the work of people with illness requiring self-care in community settings. Extending this line of thinking, our research indicates how managing illness at home requires an accomplished level of expressed self-care.
The invisible nature of self-care and the signs and symptoms of long term illness have been made more perceptible, for example fatigue as an invisible symptom often managed by the person themselves. Identifying invisible aspects of illness as a disease, may not always identify the needs of people striving for independence and consequently instigating self-care. Our research provides insight into how people with illness trivialise their role as the principal provider of their own care.
To clarify, self-management is that care that is directed by a health professional, while self-care is controlled by personal choices and accommodations made when living with illness. To attain levels of well-being through efforts that are largely imperceptible, people with illness make compromises. Unless health professionals examine people’s input into their health status closely, important cues are missed in terms of the extent of how self-care has become entrenched in a person’s life living with illness.
Methods:
Interpretive description was instrumental to ensure our research remained orientated to the person-with-illness. Twenty nine participants were individually interviewed nine months after they had been discharged home from hospital, following an acute coronary syndrome event. All participants had sustained high blood glucose at the time of admission to hospital, indicating prediabetes, in addition to their cardiovascular disease (CVD). This combination of conditions is now clearly identified to have a shared pathogenesis and subsequent illness sequelae, which is why this group of people was specifically targeted.
Results:
Findings highlight that invisible self-care persists as absent in patient assessments and conversations. Participants in our research described in their interviews how prediabetes frequently remained in the background, concealed by ongoing manifestations or treatments of CVD. In addition, participants had visible and less visible conditions that required ongoing monitoring and management, such as arthritis and hypertension. Consequently there was a notable indifference to the invisible work undertaken by participants to self-care for ongoing health issues arising from multiple long term conditions.
Conclusion:
Nurses in any clinical setting are working with people with multiple long term conditions such as CVD and diabetes. To reduce the burden of evolving disease and subsequent illness, nurses are in an ideal position to provide support and partnership for those undertaking self-care. Professional nursing practice should elucidate self-care with people at every turn, to make the invisible work of caring for one-self with illness an important feature of nursing assessment and clinical judgement.