Authors

  1. Buck, Harleah G. PhD, RN, FPCN, FAHA, FAAN

Article Content

In this second special issue on the important topic of "Caregiving in Cardiovascular Disease," we continue to examine ways in which informal caregivers (family or friends) impact and are impacted by their caregiving experience. First, a few observations related to the salience of the topic of caregiving in healthcare today will be made, followed by brief introductions of the 7 articles in the issue, and then these articles will be discussed in the light of today's healthcare environment.

 

Caregiving, at its core, is a basic human response of one human being to another, strengthening bonds between individuals and within communities.1,2 However, what has changed in the current healthcare environment is the amount and complexity of care that is expected from nonprofessionals (ie, informal caregivers).3 In addition, the length of time of caregiving has expanded from days or weeks to years or decades with the rise in survivable, serious chronic illnesses.4 Finally, these caregiving expectations are not going to decrease but rather increase exponentially for demographic and economic reasons. The convergence of an increasingly aging population with social movements toward aging in place5 and increases in hospital-at-home programs6 will result in more informal caregiving expectations and responsibilities rather than less.

 

The articles in the issue primarily look at informal caregiving through a dyadic (patient/informal caregiver) behavioral lens. Lewin's seminal behavioral equation posits that behavior is a function of the person given the environment or B = f(P, E).7 Although the simplicity and elegance of this conceptualization is compelling, it begs the question as to whether a second intimate individual, such as an informal caregiver, can be considered merely "environment" or something more is at work. Subsequent social psychologists conceptualized this interdependence as the interaction between the needs, thoughts, and motives of 2 people in the context of their social situation.8 Simply put, one could state that dyadic relationships, like all relationships, are complex.

 

This complexity is visible in the articles in this issue. Several articles seek to understand the complexity by examining relational processes; several, individual processes; one genetics; and one theory. Pucciarelli and colleagues examined the moderating effects of dyadic mutuality between depressive symptoms and quality of life in stroke survivors and caregivers. From the same data set, Bolgeo and colleagues explored actor and partner effects in the interaction between spirituality and mood states (anxiety, depression). Cooney and colleagues also tested the moderating role of mutuality and social support on the association between the patient functioning and symptoms and caregiver burden in heart failure (HF) dyads. Chung and colleagues using caregiver data from an HF dyadic study examined whether perceived control predicted caregivers' perceptions of positive or negative changes in life independently of their emotional distress or burden. Similarly, Stromberg and colleagues examined actor and partner effects of perceived control and depressive symptoms on well-being in spousal HF dyads. Smith and colleagues take a completely different tack in understanding the complexity of dyads when they examined whether taste-related genotypes predicted salt taste sensitivity and dietary sodium intake in both members of HF dyads. Finally, Fleury and colleagues present a theoretically driven intervention, nostalgic remembering, developed to strengthen the relationships of dyads receiving palliative care for advanced HF.

 

Looking across studies, we see that the databased studies (all studies except that of Fleury et al) are secondary analyses and, as such, experience the limitations inherent in that method. Similarly, 4 of the 6 databased studies used cross-sectional data and therefore cannot make any causal inferences. In keeping with other caregiver studies, there is a greater focus on negative aspects of caregiving such as depression, anxiety, distress, and burden (measured in multiple studies) and less on positive aspects such as mutuality and spirituality. Taken together, what are these studies telling us? First, mutuality is a double-edged sword for caregivers-it moderates the relationship between their own internal weather (eg, mood states and well-being) and their perceptions of the patients' condition and how burdensome they find the care. Second, although recommendations to intervene to increase perceived control in dyads are thoughtful and heartfelt, are we also working to design care systems that do not result in a loss of control? Is nonadherence perhaps a dyadic indicator of those who refuse to cede control to systems that do not consider their values and wishes? A final thought from these interesting articles is: have we considered that the caregiver is more than likely the largest epigenetic factor at work in any chronic illness management?

 

So, given the current healthcare environment; what do these articles add to nursing practice? They highlight that we cannot expect already overextended families to take on more responsibilities without equally valuing and instrumentally supporting their work. Regulations and funded support systems are needed, which provide training in complex medical management such as symptom management and heavy physical care such as care of debilitated patients. Families and friends want to care for each other, but they need resources and support that they currently may not receive.

 

REFERENCES

 

1. Schulz R, Beach SR, Czaja SJ, Martire LM, Monin JK. Family caregiving for older adults. Annu Rev Psychol. 2020;71:635-659. [Context Link]

 

2. Kitko L, McIlvennan CK, Bidwell JT, et alAmerican Heart Association Council on Cardiovascular and Stroke Nursing; Council on Quality of Care and Outcomes Research; Council on Clinical Cardiology; and Council on Lifestyle and Cardiometabolic Health. Family caregiving for individuals with heart failure: a scientific statement from the American Heart Association. Circulation. 2020;141(22):e864-e878. [Context Link]

 

3. Buck HG, Harkness K, Wion R, et al. Caregivers' contributions to heart failure self-care: a systematic review. Eur J Cardiovasc Nurs. 2015;14(1):79-89. [Context Link]

 

4. Wolff JL, Mulcahy J, Huang J, Roth DL, Covinsky K, Kasper JD. Family caregivers of older adults, 1999-2015: trends in characteristics, circumstances, and role-related appraisal. Gerontologist. 2018;58(6):1021-1032. [Context Link]

 

5. Song P, Chen Y. Public policy response, aging in place, and big data platforms: creating an effective collaborative system to cope with aging of the population. Biosci Trends. 2015;9(1):1-6. [Context Link]

 

6. Brody AA, Arbaje AI, DeCherrie LV, Federman AD, Leff B, Siu AL. Starting up a hospital at home program: facilitators and barriers to implementation. J Am Geriatr Soc. 2019;67(3):588-595. [Context Link]

 

7. Kelley HH. Lewin, situations, and interdependence. J Soc Issues. 1991;47(2):211-233. [Context Link]

 

8. Rusbult CE, Van Lange PA. Interdependence, interaction, and relationships. Annu Rev Psychol. 2003;54:351-375. [Context Link]