ABSTRACT
BACKGROUND AND OBJECTIVES: Adolescents with cardiac disease are at risk for life-changing complications and premature death. The importance of advance care planning (ACP) in adults with congenital heart disease and in pediatric patients with HIV and cancer has been demonstrated. ACP preferences of adolescents with heart disease have not been evaluated. We describe ACP preferences of adolescents with heart disease and compare with those of their caregivers. METHODS: Outpatient adolescents aged 12 to 18 years with heart failure, cardiomyopathy, heart transplantation, or who were at risk for cardiomyopathy, as well as their caregivers, completed self-administered questionnaires which evaluated participants' opinions regarding content and timing of ACP discussions, preferences for end-of-life communication, and emotional responses to ACP. RESULTS: Seventy-eight adolescents and 69 caregivers participated, forming 62 adolescent-caregiver dyads. Adolescents and caregivers reported that adolescent ACP discussions should occur early in the disease course (75% and 61%, respectively). Adolescents (92%) wanted to be told about terminal prognosis, whereas only 43% of caregivers wanted the doctor to tell their child this information. Most adolescents (72%) and caregivers (67%) anticipated that discussing ACP would make the adolescent feel relieved the medical team knew their wishes. Most caregivers (61%) believed that adolescents would feel stress associated with ACP discussions, whereas only 31% of adolescents anticipated this. CONCLUSIONS: Adolescents and their caregivers agree that ACP should occur early in disease course. There are discrepancies regarding communication of prognosis and perceived adolescent stress related to ACP discussions. Facilitated conversations between patient, caregiver, and providers may align goals of care and communication preferences.
Subject(s)
Advance Care Planning/trends , Caregivers/psychology , Caregivers/trends , Heart Diseases/psychology , Patient Preference/psychology , Surveys and Questionnaires , Adolescent , Adult , Advance Care Planning/standards , Child , Cross-Sectional Studies , Female , Heart Diseases/therapy , Humans , Male , Middle Aged , Patient Transfer/standards , Patient Transfer/trends , Surveys and Questionnaires/standardsABSTRACT
BACKGROUND: Job loss in patient with chronic illness like schizophrenia is the most serious public concern in the clinical and socio-economic terms worldwide. Patients with schizophrenia usually have unsatisfactory job termination like quitting or getting fired which results well-established negative outcomes. The complex interplay between one another has made job and mental illness the focus areas. In the developing nations, there is limited study on these areas in spite of higher rates of job loss. OBJECTIVES: This study aimed to assess the prevalence and correlates of job loss among schizophrenia outpatient units in Addis Ababa, Ethiopia. METHODS: Institutional based cross-sectional study was conducted at Saint Amanuel Mental Specialized Hospital among schizophrenia outpatient units in Addis Ababa from May to June 2018. A total of 421 study subjects were interviewed using Positive and Negative Syndrome Scale and Perceived devaluation and discrimination scale. Out of the total study participants, female populations were slightly higher (50.4%) and the majorities (38.6%) were orthodox religion followers. Study characteristics was summarized using descriptive statistics and bi-variable and multivariable analysis was performed using Statistical Package for Social Science version 24. Furthermore, those factors at p value ≤ 0.05 were considered as statistically significant. RESULTS: The prevalence of job loss among patients with schizophrenia was 37.3%. Factors including unmarried [AOR = 2.42:95% CI (1.28, 4.54)], divorced [AOR = 2.34: 95% CI (1.16, 4.71)], severe positive symptoms [AOR = 2.03: 95% CI (1.15, 3.60)], severe general psychopathology [AOR = 1.76: 95% CI (1.01, 3.08)], and poor level of social and occupational functioning [AOR = 5.05: 95% CI (2.81, 9.09)] were significantly associated with job loss among schizophrenia people. CONCLUSION: This study suggested that job loss among schizophrenia outpatients was high. There was significant association among people with unmarried, divorced, severe positive symptoms, poor functionality and higher general psychopathology. Therefore, clinical and psychosocial factors were responsible for job loss which warrant further attention and investigation.
