Background: Adults with congenital heart defects (ACHD) face long-term complications related to prior surgery, abnormal anatomy, and acquired cardiovascular conditions. Although self-care is an important part of chronic illness management, few studies have explored self-care in the ACHD population. The purpose of this study is to describe self-care and its antecedents in the ACHD population.
Methods: Persons with moderate or severe ACHD (N=132) were recruited from a single ACHD center. Self-care (health maintenance behaviors, monitoring and management of symptoms), and potential antecedents including sociodemographic and clinical characteristics, ACHD knowledge, behavioral characteristics (depressive symptoms and self-efficacy), and family-related factors (parental overprotection and perceived family support) were collected via self-report and chart review. Multiple regression was used to identify antecedents of self-care maintenance, monitoring, and management.
Results: Only 44.7%, 27.3%, and 23.3% of participants performed adequate levels of self-care maintenance, monitoring and management, respectively. In multiple regression analysis, self-efficacy, education, gender, perceived family support, and comorbidities explained 25% of the variance in self-care maintenance (R2=.248, F(5, 123)=9.44, p<.001). Age, depressive symptoms, self-efficacy, and NYHA Class explained 23% of the variance in self-care monitoring (R2=.232, F(2, 124)=10.66, p<.001). Self-efficacy and NYHA Class explained 9% of the variance in self-care management (R2=.094, F(2, 80)=5.27, p=.007).
Conclusions: Low levels of self-care are common among persons with ACHD. Multiple factors, including modifiable factors of self-efficacy, depressive symptoms, and perceived family support, are associated with self-care and should be considered in designing future interventions to improve outcomes in the ACHD population.
by
Julie A. Womack;
Terrence E. Murphy;
Harini Bathulapalli;
Kathleen M. Akgun;
Cynthia Gibert;
Ken M. Kunisaki;
David Rimland;
Maria Rodriguez-Barradas;
H. Klar Yaggi;
Amy C. Justice;
Nancy S. Redeker
by
Dio Kavalieratos;
Jane Lowers;
Elisabeth P Dellon;
Anne Stephenson;
Robert Arnold;
Andrew Althouse;
Kwonho Jeong;
Ethan Dubin;
Jesse Soodalter;
Cade Hovater;
Marie Bakitas;
Jessica Goggin;
William Hunt;
Sigrid Ladores;
Kimberly Curseen;
Gretchen Winter;
George Solomon;
Jonathan Ailon;
Douglas Conrad
Introduction Cystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF. Thus, this study aims to compare the effect of specialist palliative care plus usual CF care vs usual CF care alone on patient quality of life. Methods and analysis This is a five-site, two-arm, partially masked, randomised superiority clinical trial. 264 adults with CF will be randomly assigned to usual CF care or usual CF care plus a longitudinal palliative care intervention delivered by a palliative care specialist. The trial's primary outcome is patient quality of life (measured with the Functional Assessment of Chronic Illness Therapy-Palliative care instrument). Secondary outcomes include symptom burden, satisfaction with care and healthcare utilisation. Outcomes will be measured at 12 months (primary endpoint) and 15 months (secondary endpoint). In addition, we will conduct qualitative interviews with patient participants, caregivers, and palliative care and CF care team members to explore perceptions of the intervention's impact and barriers and facilitators to dissemination. Ethics and dissemination Human subjects research ethics approval was obtained from all participating sites, and all study participants gave informed consent. We will publish the results of this trial in a peer-reviewed journal. Trial registration number ISRCTN53323164.
Background Patient's knowledge about heart failure (HF) contributes to successful HF self-care, but less is known about shared patient-caregiver knowledge. Objectives The purpose of this analysis was to: 1) identify configurations of shared HF knowledge in patient-caregiver dyads; 2) characterize dyads within each configuration by comparing sociodemographic factors, HF characteristics, and psychosocial factors; and 3) quantify the relationship between configurations and patient self-care adherence to managing dietary sodium and HF medications. Methods This was a secondary analysis of cross-sectional data (N = 114 dyads, 53% spousal). Patient and caregiver HF knowledge was measured with the Atlanta Heart Failure Knowledge Test. Patient dietary sodium intake was measured by 3-day food record and 24 h urine sodium. Medication adherence was measured by Medication Events Monitoring System caps. Patient HF-related quality of life was measured by the Minnesota Heart Failure Questionnaire; caregiver health-related quality of life was measured by the Short Form-12 Physical Component Summary. Patient and caregiver depression were measured with the Beck Depression Inventory-II. Patient and caregiver perceptions of caregiver-provided autonomy support to succeed in heart failure self-care were measured by the Family Care Climate Questionnaire. Multilevel and latent class modeling were used to identify dyadic knowledge configurations. T-tests and chi-square tests were used to characterize differences in sociodemographic, clinical, and psychosocial characteristics by configuration. Logistic/linear regression were used to quantify relationships between configurations and patient dietary sodium and medication adherence. Results Two dyadic knowledge configurations were identified: “Knowledgeable Together” (higher dyad knowledge, less incongruence; N = 85, 75%) and “Knowledge Gap” (lower dyad knowledge, greater incongruence; N = 29, 25%). Dyads were more likely to be in the “Knowledgeable Together” group if they were White and more highly educated, if the patient had a higher ejection fraction, fewer depressive symptoms, and better autonomy support, and if the caregiver had better quality of life. In unadjusted comparisons, patients in the “Knowledge Gap” group were less likely to adhere to HF medication and diet. In adjusted models, significance was retained for dietary sodium only. Conclusions Dyads with higher shared HF knowledge are likely more successful with select self-care adherence behaviors.