2019 Invitational Conference Summary
Self-care research: Where are we now? Where are we going?
Report from the Inaugural conference of the International Center for Self-Care Research
Held at the Rome campus of the Australian Catholic University, Italy in June 2019
- Riegel B, Dunbar SB, Fitzsimons D, Freedland K, Lee CS, Middleton S, Stromberg A, Webber D, Vellone E, Jaarsma T. Self-care research: Where are we now? Where are we going? International Journal of Nursing Studies, in press.
At this inaugural conference we discussed the current state of self-care research and proposed an agenda for future research. A full report of that discussion will be published, but this brief summary provides a focused overview of those discussions. We identified seven major reasons why self-care is challenging, which can be grouped into the general categories of behavior change (e.g. habits) and illness-related factors that make self-care exceedingly difficult – multimorbidity, symptoms, and stressful life events. We identified six specific knowledge gaps that, if addressed, may help to address these challenges. These knowledge gaps are briefly described below.
Influence of Habit Formation on Self-Care Behavior Change
Different factors influence lifestyle behaviors differ across the lifespan. Many unhealthy behaviors, such as food choices, are learned early in life and these habits are hard to change. Lack of motivation to change is powerful, but only one of many factors influencing behavior change. Further, even after a healthy behavior is adopted, it is challenging to maintain the behavior over time.
Implications for self-care research. Some promising interventions to promote behavioral change include education, persuasion, incentivizing through behavioral economics, training, enablement, modelling, restrictions and environmental restructuring. Opportunities for health education and implementation of proven self-care interventions are often missed by busy clinicians. One important line of research is the development and testing of intervention approaches that address habits with stable, cue-based routines with potential for lasting behavior change. Information and Communication Technology may support and empower behavior change.
Resilience in the Face of Stressful Life Events and Social Contexts that Interfere with Self-Care
Resilience is the ability to adapt, to recover, to “bounce back” from difficult experiences. Resilience helps people adapt well when life events such as trauma, tragedy, and adverse situations interfere with self-care.
Implications for self-care research. We know little about how resilience influences self-care in ill populations. More research is needed to identify ways to develop and nurture resilience in future self-care interventions.
Culture and Self-Care
Every country has its own cultural characteristics, ideas, customs, and social behaviors. This applies as much to self-care beliefs and practices as to other aspect of life. Although the broad elements of self-care (e.g., physical activity, good hygiene) are universal, the particularities differ.
Implications for self-care research. The deep cultural differences between countries illustrate the need for research examining the influences of culture on self-care.
Difficulty Performing Self-Care with Multiple Chronic Conditions
For those who have developed a chronic condition, additional conditions add challenges and persons with multimorbidity are particularly burdened in terms of self-care. Specific challenges for those with multimorbidity include poor access to healthcare, care fragmentation, polypharmacy, functional and psychological limitations, diet complexity, lack of confidence in the ability to integrate conflicting self-care recommendations, and an inability to cope with the burden of multimorbidity. Multiple symptoms may occur simultaneously and are frequently multiplicative or acceleratory in effect. Symptom monitoring, interpretation and management can be confusing when symptoms of different conditions overlap.
Implications for self-care research. The study of self-care in persons with multimorbidity needs to be patient-centered rather than disease focused. That is, presumably someone with three different illnesses experiences issues with self-care, regardless of what those conditions are. Further, a consistent approach to categorizing multimorbidity is needed to allow eventual comparisons of research.
Self-Care in Persons with Severe Mental Illness
Self-care is important in persons with mental Illness and conversely there is good reason to expect that psychiatric illness may have a profound effect on self-care. There has been limited research on self-care of persons with severe mental illness. Most studies are limited to a small number of mental-physical disease comorbidities such as the effects of major depression and anxiety disorders on physical illness and treatment adherence.
Implications for self-care research. Interventions designed to promote self-care in this population are greatly needed as are studies exploring the effects of severe mental illness on symptom awareness and insight. Technology could support self-care by fostering engagement with the healthcare team, helping patients to monitor and interpret symptoms, guiding treatment choices, reinforcing treatment adherence, and motivating lifestyle changes. This topic should be considered a high priority for self-care research.
The Influence of Others on Self-Care
Although our efforts address self-care, we acknowledge that a variety of persons contribute to self-care – care partners, family, peers, healthcare professionals, home care workers, etc. Clearly, these partners participate in important ways to self-care efforts, although the way they participate varies widely. There is increasing scientific interest in studying care partners. Studies currently in process include those designed to explore and better understand the “caregiver world” and variables associated with caregiving; studies focused on training care partners to manage the condition; studies designed to improve caregiver contributions to patient self-care; and studies designed to improve the self-care of care partners.
Implications for self-care research. Effort is needed to standardize the terminology used for lay carers. The term “caregiver” suggests a linear relationship from carer to patient, but in many dyads, illness management is performed as an interdependent team. We suggest “care partners” to reflect the fact that dyads appraise illness as a unit and this appraisal influences how they engage in illness management behaviors.
To achieve the vision and mission of the Center, we have three specific goals. First, we will lead a collaborative program of research that addresses self-care knowledge gaps and improves outcomes. Second, we will create a supportive international network for knowledge transfer and support of innovations in self-care research. Third, we will train others in self-care research that promotes primordial prevention, health maintenance in individuals at risk for chronic illness, and improves clinical outcomes in those who have a chronic condition.
Beyond these specific short-term goals, there are important policy implications of this work. Drivers of policy development and change include: 1) evidence for successful policies and programs from other countries or different jurisdictional levels, 2) public opinion and media interest, and 3) enthusiastic politicians, senior health officials and policy advisers who are champions for self-care. To engage them, it is essential to articulate the case for self-care as vital in health and healthcare.
Many countries have incorporated aspects of self-care into policies and promoted some innovative and notable practices. However, all countries are a long way from implementing robust and holistic policy prescriptions designed to promote individual and population self-care capabilities, shift professional practices, or reorient healthcare systems towards a prevention, self-care ethos. A definitive statement of the benefits and reasons for encouraging self-care and making it part of official government policies remains to be made.
We gratefully acknowledge the support of Australian Catholic University in supporting and hosting this conference.