The science of heart failure (HF) dyadic self-care is advancing rapidly, as evidenced by recent theoretical work,1 literature reviews,2,3 and multiple empiric studies.4–7 In HF self-care, a dyad refers to a person diagnosed with HF and his/her informal caregiver. This informal caregiver may or may not be a family member but must contribute to self-care without financial compensation. With this increased focus on dyads comes a commensurate need for clinically relevant advancements in dyadic care and development of a deeper understanding of the impact of dyads on HF self-care.
One such scientific advancement is Lyons and Lee's1 new dyadic illness management theoretical model, which proposes that the dyad itself, rather than either individual patients or caregivers should be the unit of analysis. As such, examination of the appraisal of the illness, management behaviors, and physical and mental health occurs at the dyadic rather than individual level. In a dyadic analysis, risk or protective factors are now conceptualized as risk (or protection) to the dyad's ability to collaborate successfully in managing the illness. This theory creates a new framework that allows examination of, for example, the impact of incongruent appraisal, poor collaboration, and unhealthy dyadic behaviors, with the potential to move science beyond the atheoretical barriers noted by dyadic researchers.2,3
Although the Theory of Dyadic Illness Management is an important advancement, it has not yet been operationalized in clinical practice. The central elements of the Theory of Dyadic Illness Management, particularly dyadic appraisal and management behaviors, are supported by data generated from the development and testing of a dyadic HF care typology developed by our group and first introduced in 2013.8 This suggests that our dyadic HF care typology may be useful in implementing the Theory of Dyadic Illness Management in clinical practice.
Typologies, once considered archaic, are now viewed as person-oriented classification systems that allow a whole-system view of information patterns.9,10 The purposes of this article are to describe the initial conceptualization of the HF care dyadic typology, present advances in our thinking, and suggest future directions for this clinically relevant classification system.
Initial Conceptualization of the Heart failure Care Dyadic Typology
The initial conceptualization of the HF care dyadic typology was derived from the Interdependence Theory, which states that human interaction is a function of the needs, thoughts, and motives of 2 people in a particular situation.11 This theoretical conceptualization is mathematically and empirically testable with the Actor-Partner Interdependence Model (APIM),12 an analytic strategy frequently used in dyadic studies.7,13,14 Actor effects occur when the individual's independent variable impacts his/her own dependent variable. For example, when a person's anxiety level makes it difficult for that person to listen to another person, that is an actor effect. Partner effects occur when the individual's independent variable impacts his/her partner's dependent variable. For example, when an individual's anxiety level makes it hard for another person to concentrate, that is a partner effect. The APIM posits that Actors (patients in this case) and Partners (caregivers) can interact with (1) primarily actor (A > P) or (2) partner effects (A < P), (3) equal actor and partner effects (A = P), or (4) unequal actor and partner effects (A ≠ P).15
The HF care dyadic typology integrates Interdependence Theory and the APIM by operationalizing human interaction in self-care as 2 individuals who work on HF self-care can do so in 1 of 4 potential ways—the patient or caregiver can take sole responsibility for the patient's HF self-care (A > P; A < P). Alternately, they may work together in collaborative (they work together on the same self-care task; [A = P]) or complementary (they work together but on different self-care tasks; [A ≠ P]) ways (Figure 1). For example, in collaborative and complementary dyads, the dyad may monitor the patient's weight together with the patient stepping on the scale and caregiver writing the weight down (collaborative) or the patient may weigh himself/herself while the caregiver is preparing a low-sodium breakfast for the patient (complementary).
As part of this first conceptualization, defining features, subtypes, characteristics, contexts within which the particular type is prevalent were developed for each of the 4 types (Table 1).8 For example, in the patient-oriented type, the defining feature is that the patient takes care of most of his/her self-care without input from the caregiver. This behavior may occur because the patient refuses the caregiver's help or the caregiver may refuse to help (subtypes). The patient-oriented type is considered an individually oriented type (characteristic) and expected to occur most commonly early in the HF trajectory (context).8 Once the types were proposed, the next steps were to empirically characterize, attempt to measure, and then begin examining them in a series of developmental studies. The first 3 studies involved subanalyses from a larger, parent study (Hupcey, principal investigator [PI]) examining the palliative care needs of patients with HF and caregivers in the last 2 years of life.
Study 1: Qualitative Characterization of the Theoretically Derived Types
In the first study,8 Stake's instrumental case study methodology was used to describe the 4 types by their characteristics (ie, individually or relationally oriented): 2 individually oriented types—type I, patient oriented; type II, caregiver oriented; and 2 relationally oriented types—type III, collaboratively oriented; and type IV, complementary oriented HF care (Table 2). Nineteen spousal dyads (patient mean age, 72 years; caregiver mean age, 69 years; mean time married, 45 years) with moderate to severe HF (New York Heart Association class IIIB–IV) were qualitatively interviewed on how they managed the patient's HF self-care at home. Evidence of the credibility of the 4 types was supported by presenting 4 cases, but a fifth case for the incongruent dyad arose during this examination. The incongruent dyad type was characterized by a disagreement between the patient and caregiver on who conducts the patient's self-care. A content analysis across dyads resulted in identifying an overarching theme of “Sharing Life,” which included subthemes: connected by each other, by other people, or by intangibles (ie, faith, loss, identity).8 “Sharing Life” illustrated how dyads use already established behavioral patterns developed across the life course (eg, a sequence of roles and events enacted over time)16 of the relationship. This first study extended the work of other investigators17,18 who were just beginning to examine dyadic incongruence, while identifying the role of the life course dimensions of dyadic interaction in HF self-care.
Study 2: Typology Instrument Development and Preliminary Testing
A 1-item question was developed concurrently with the typology to assess the proposed HF self-care dyadic types.19 This question was designed to quickly evaluate in the clinical setting who takes primary responsibility for the patient's HF self-care. The questionnaire first defines self-care for the respondent and then gives them 4 mutually exclusive options (patient, caregiver, collaborative, and complementary) to indicate who provides daily HF self-care. Each member of the dyad (patient and caregiver) answers the question individually, and their answers are then compared. Preliminary testing in the same sample as the first study8 resulted in evidence for clarity and acceptability by patients and caregivers. Patients were most likely to indicate that they collaborated. Caregivers were most likely to indicate that the patient did all the self-care. When their responses were compared, only 9 of 19 dyads agreed on their type (κ = .28; P = .025), suggesting greater occurrence of dyadic incongruence (disagreement on who is responsible for the HF self-care) than previously found when qualitatively examined by other investigators.17,18 Dyads were most likely to agree if they were in collaborative dyads (n = 4/9). However, research assistants reported that the dyads found the 2 relationally oriented dyadic types—collaborative (they work together on the same self-care tasks) and complementary (they work together but on different self-care tasks)—a distinction without real difference. Dyads reported that context often determined when and how they worked together on the same task or not, but they viewed both types as collaborative. With this introduction of context determining degree or kind of collaboration, we began to wonder how stable the dyadic types were.
Study 3: Preliminary Assessment of Stability of the HF Care Dyadic Typology Across Time
In the next step, we explored how stable or dynamic these dyadic types were.20 To do that, we used the data from studies 18 and 219 as baseline data and then collected the same data (qualitative interviews and 1-item question) a second time between 4 and 12 months later. A content analysis of concurrent qualitative interviews was conducted. Ten generally New York Heart Association class III HF (n = 6) patients (mean age, 64.8 years) with spousal caregivers (mean age, 64.4 years) were examined. Seven dyads (characterized as relational; ie, collaborative or complementary oriented) selected the same type at T1 and T2. The 3 dyads that changed type were characterized as individual, patient or caregiver oriented, suggesting that the relationally oriented types may be more stable. In addition, 2 of those 3 individually oriented dyads became incongruent at T2, with each member selecting a different type from each other and from their selection at T1. The narratives supported this apparent instability, with 100% concordance between the quantitative/qualitative data (using the 1-item questionnaire and an “I vs we” analysis of the qualitative data) for the stable dyads and only 50% concordance in the dyads that changed. Examination of the narratives suggested that internal factors, such as one partner perceiving things changing while the other does not, and external factors, such as individual health status of either partner contributed to this instability in dyadic type.
Advances in Thinking
Concurrent with our examination, other scientists were examining the role of dyads in HF.21–24 All of these studies (ours and others) led to advances in our thinking on the initial conceptualization of the HF care dyadic types. Where we proposed 4 types, the case study suggested that there was a fifth type—the incongruent type. Where we proposed 2 distinct, relationally oriented types (collaborative and complementary), the qualitative interviews and subsequent feedback from participants suggested that both types were considered “collaborative” by the dyads—they did not consider these as 2 different types but rather 1 type. In response, we collapsed the collaborative and complementary type into “collaborative” and designated the new fourth type as “incongruent,” characterized as a patient and caregiver who disagree on who does self-care (Figure 2, type IV). This reconceptualization is supported by the APIM, which posits unequal actor and partner effects for this fourth type.12 The questionnaire did not change; we made the adjustment during analysis. After this reconceptualization, we were ready to examine dyadic types further in new studies.
Study 4: Dyadic Mutual Engagement and Hypothesis Testing
The next mixed-method study5,25,26 was prospectively designed to describe dyadic engagement in HF self-care. We enrolled 78 mixed (spousal, adult child, other) dyads. Patients were primarily male (67%) and mean age was 75 years. Caregivers were primarily female (78%) and mean age was 63 years. Most (96%) were white. The qualitative data supported our earlier findings (study 1) that mutual engagement involved maintaining established life course patterns. Dyads create interpersonal efficiencies or patterns across the life course that involve matching current situations to previous similar situations and then responding according to these patterns.11 The discovery (study 1) and confirmation (study 4) of these life course patterns also support the use of typologies that allow a whole-system view of information patterns. However, the data also added to our understanding that dyad's patterns for self-care maintenance (day-to-day care) and self-care management (symptom response)27 may differ in some dyads but not others when escalating symptoms challenge the life course pattern. Dyads that scored higher in self-care self-efficacy and self-care management were more likely to continue using their usual life course pattern, whereas those who scored lower were more likely to access outside support.5 One main finding from this study was that caregivers scored lower on self-care maintenance (day-to-day care)27 in dyads who also disagreed on type. This suggests to us that we need to examine the role of dyadic congruence or agreement on type more closely if we expect caregivers to engage in daily self-care behaviors.25
Study 5: Cultural Variations in the Heart Failure Care Dyadic Typology
In the final study, data from 3 unique datasets (2 US and 1 Spanish) were examined for frequency and distribution of dyadic types to assess if the number and kind of dyadic types are similar outside of their original context in the United States. Established clinical guidelines28–30 and multinational examinations of both patient31 and caregiver self-care activities32 suggest that although there may be geographical variations in self-care maintenance or adherence,31 the activities themselves and who is responsible for them are fairly similar across cultures. Data from 2 different northeastern US studies (Hupcey, PI; Buck, PI) were compared with data from an ongoing Spanish study (Juárez-Vela, PI) to examine this question of similarity. Cultural similarities and differences were compared side by side (Table 3). The Spanish sample shared a similar percentage of patient-oriented types with the first but not the second US sample. The largest difference was found in the percentage of caregiver-oriented types (US, 0.02% and 0.04% vs Spanish, 47%). Further differences were found in the percentage of dyads that collaborate (US, 37% and 39% vs Spanish, 12%) and incongruent dyads (US, 49% and 51% vs Spanish, 27%). These findings suggest cultural variations in caregiver engagement in self-care that have not previously been captured.
In summary, development and testing of the HF care dyadic typology across studies have resulted in a well-characterized, pragmatic and parsimonious, person-oriented classification system that can facilitate our understanding of how patients and informal caregivers perform the patient's HF self-care at home. It has also resulted in a practical way to measure the types directly. The outcomes of the studies described in this article suggest that further testing is needed on whether the particular dyadic type or if the dyad agrees on their type is more predictive of adequate self-care. Why is this important? If dyads disagree on who is responsible for the self-care, neither partner may take responsibility, or the dyad may waste valuable time and resources in interpersonal conflict. Either outcome may result in self-care failures with subsequent HF advancement, hospitalization, and mortality.
The next logical step is to conduct further study using a larger, more heterogeneous sample in a longitudinal trial. If these earlier findings are supported, then we will move forward with intervention studies. For example, it is currently unknown whether incongruent types result in poorer patient outcomes such HF advancement or mortality. Linking the types to patient outcomes is needed before we can recommend testing implementation strategies such as imbedding the 1-item question in electronic health records. It is also recommended that future studies in other countries examine the relationships between dyadic types and patient outcomes as has been done in the United States to determine if any of the differences noted in the study 5 sample are clinically meaningful. Additional next steps include developing further testable hypotheses from these data, such as the role of dyadic congruence. Although individual33 and dyadic34 self-care typologies have been examined previously, these typologies were data driven, derived either from qualitative data or comparisons of dyadic data from self-care instruments rather than directly measuring the typology with a specific, theoretically derived instrument as in our studies. Therefore, our data may allow for the generation of hypotheses that are more generalizable to other chronic illness populations with similar self-care requirements. Finally, intervention studies should examine whether adapting self-care instruction to dyadic type results in better patient outcomes.
This typology and the instrument that measures it were initially developed for clinical use. The research to date was conducted to provide preliminary evidence for its validity as a clinical instrument. How is the instrument administered? Both patient and caregiver respond to the 1-item question. The clinician then reviews the responses of both parties (checking if they agree or not) and personalizes the plan of care to the realities of the dyad. This may involve identifying who takes primary responsibility for the self-care and directing any education to them; it may involve referring the couple to supportive care if the dyad disagrees on type or even couples' therapy if dyadic incongruence signifies an inability to care for the patient's HF because of relational issues.
In this article, we have described the initial conceptualization of a clinically meaningful HF care dyadic typology, presented advances in our thinking related to the typology, and suggested future directions for research and clinical practice. As the HF dyadic self-care science has advanced, so has our understanding of the effect of dyadic interaction on HF self-care. But with this increased understanding has come an appreciation of the complexity that ensues when 2 individuals work together on 1 complex task—HF self-care.
What's New and Important
- Patients with HF are clinically complex and hard to manage at home. Informal caregivers may or may not provide a significant amount of support or direct care to the patient.
- Patient and informal caregiver disagreement on who is responsible for the patient's HF self-care may be a key factor in self-care failures in the community; being able to assess for and intervene quickly is necessary.
- This HF care dyadic typology and instrument is pragmatic, parsimonious, and person oriented. Regular use may improve the busy clinician's understanding of how patients and informal caregivers perform the patient's HF self-care at home.
- Once the dyad's type is ascertained, a clinician can then personalize his/her plan of care to the realities of the dyad.
The authors acknowledge the Aragon Institute for Health Research (IIS Aragon), where Dr Juárez-Vela is a researcher.
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