Evaluations of a Low-Intensity, Symptom-Guided Pilot Intervention for Spousal Caregivers of Patients With HF
What are patient and caregiver responses to a low-intensity intervention designed to engage caregivers in management of commonly experienced symptoms in heart failure (HF), including depressive symptoms, pain, breathlessness, and fatigue?
A qualitative design was employed to assess patient symptoms using a modular approach by which patients and caregivers were given one of the four symptom (depressive symptoms, pain, breathlessness, or fatigue) modules of their choice to use and evaluate relative to their personal needs. Interviews were conducted to evaluate the usability and acceptability of the symptom-management modules as well as caregiver engagement in symptom management. Patient and caregiver interview narratives were content analyzed, categorized, and themed.
The sample consisted of 22 participants (15 patients and 7 caregivers). Most patients were white men, aged 65-80 years, who were veterans and had a high school education. All caregivers were patients’ wives. Patients and caregivers were highly interested in the intervention; however, many had difficulty implementing the low-intensity symptom management modules, especially those who were enrolled during hospitalization. Within this context, three very interesting findings emerged. First, patient-caregiver relationship characteristics affected perceived value of the intervention, including enhancing needed communication about HF. Second, timing and structural factors were crucial for successful implementation of the intervention. Although interest was high among patients approached by investigators, those who were enrolled while hospitalized delayed implementing the intervention and reviewing and using the module and, as such, were unprepared for initial investigator interviews. Third, patients who were confident in their ability to control their health and believed their symptoms were modifiable valued the intervention.
Like a three-legged stool, all three aspects needed to be equally present for intervention success. The lack of follow-through by both patients and caregivers despite their high degree of interest in the intervention might be related to patients’ severity of illness, especially soon after hospital discharge. Further study on patients’ perceived control over their illness is needed to determine the value of symptom-management interventions and caregiver engagement.
In this study, the length of time patients had lived with a HF diagnosis ranged widely (i.e., 2 months to 40 years). This range might, in part, account for the variability in interview responses among patients and caregivers. In addition, most patients who were enrolled during a HF hospitalization delayed implementing the intervention, possibly because they were too sick and tired to do so during the post-discharge period. Further testing of the three main findings of this study with a larger and more heterogeneous sample is needed; however, this study is an important step in identifying home-based strategies that patients and caregivers can use to alleviate symptoms and avoid deteriorating health and hospitalization.
Keywords: Caregivers, Depression, Dyspnea, Fatigue, Heart Failure, Hospitalization, Pain, Palliative Care, Patient Discharge
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