Caregivers' contribution to self-care for patients treated with oral anticancer agents: A qualitative descriptive study.

PURPOSE: To adequately manage oral anticancer agents (OAAs) therapy, appropriate self-care behaviours must be implemented. Informal caregivers could support and contribute to patient self-care. This study aimed to explore and describe the caregiver contribution to self-care and their related experience of caring among informal caregivers of patients on OAAs. METHODS: Qualitative descriptive design. We conducted semi-structured interviews, which were transcribed, read in depth, and analysed with deductive and inductive content analysis, according to Mayring. Adult informal caregivers (>18 years) of elderly patients (>65 years) with solid malignancies undergoing OAAs therapy for at least 3 months were included. FINDINGS: Twenty-three caregivers were interviewed with mean age of 57,2 (SD ± 15,8). A total of 18 codes from the qualitative content analysis were found, of which ten were referred to caregiver contribution and classified into the three dimensions of self-care maintenance (i.e. behaviours to maintain illness stable), self-care monitoring (i.e., tracking symptoms and side effects), and self-care management (i.e., management of worsening symptoms), according to the Middle Range Theory of Self-Care of Chronic Illnesses. The eight codes on caregiver experience were aggregated into two main themes: negative aspects (i.e., burden, emotional state, self-denial, social isolation) and positive aspects of caregiving. CONCLUSION: Healthcare professionals should consider the importance of caregiver role in supporting their loved one treated with OAAs, also taking into account their needs to prevent burdensome situations. A holistic view in which a patient-centred approach is established should be encouraged through the communication and education of the dyad.

Comparison of mental health in individuals with primary ciliary dyskinesia, cystic fibrosis, and parent caregivers.

INTRODUCTION: Individuals with chronic respiratory diseases and caregivers are at higher risk for depression and anxiety. Primary ciliary dyskinesia (PCD) and cystic fibrosis (CF) are both rare genetic diseases, characterized by recurrent respiratory infections. This study compared depression and anxiety in people with PCD (pwPCD) and CF (pwCF), and caregivers, using the screening tools recommended in the CF guidelines. METHODS: Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder (GAD-7) were administered to a PCD and CF sample. Given that PCD is extremely rare, they were matched on age and sex to pwCF at a 1:2 ratio. Similar procedures were performed with parents. RESULTS: A total of 63 patients and 129 caregivers participated: 21 pwPCD and 42 pwCF (ages 12-34 years) plus 43 caregivers of pwPCD and 86 caregivers of pwCF. A high percentage of patients scored above the cut-off for depression (PCD: 33%; CF: 43%) and anxiety (PCD and CF both: 43%), mostly mild. Similarly, a high percentage of caregivers scored above the cut-off for depression (PCD: 42-54%; CF: 45-46%) and anxiety (PCD: 47-54%; CF: 39-56%). Suicidal ideation was endorsed by 9.5% of pwPCD, 20% of mothers and 10% of fathers and 5% of pwCF, 3% of mothers, but no fathers. CONCLUSION: A large percentage of patients and caregivers reported elevated psychological distress and suicidal ideation. Addressing psychological symptoms is critical given they are associated with poor adherence, missed clinic visits, increased inflammation and worse quality of life. Mental health screening and treatment should be integrated into PCD care.

Effects of the COVID-19 pandemic and lockdown on symptom control in preschool children with recurrent wheezing.

INTRODUCTION: Preschool wheezers are at high risk of recurrent attacks triggered by respiratory viruses, sometimes exacerbated by exposure to allergens and pollution. Because of the COVID-19 infection, the lockdown was introduced, but the effects on preschool wheezers are unknown. We hypothesized that there would be an improvement in outcomes during the lockdown, and these would be lost when the lockdown was eased. MATERIALS AND METHODS: Patients underwent medical visits before and after the COVID-19 lockdown. We recorded the childhood Asthma Control Test (cACT) and a clinical questionnaire. Data on symptoms, the need for medications and the use of healthcare resources were recorded. We compared these data with retrospective reports from the preceding year and prospectively acquired questionnaires after lockdown. RESULTS: We studied 85 preschool wheezers, mean age 4.9 years. During the lockdown, cACT score was significantly higher (median 25 vs. 23); families reported a dramatic drop in wheezing episodes (51 vs. none), significant reductions in the day and nighttime symptoms, including episodes of shortness of breath (p < .0001); the use of salbutamol and oral corticosteroids (OCS) dropped significantly (p < .0001) and 79 (95%) patients needed no OCS bursts during the lockdown. Finally, patients had significantly fewer extra medical examinations, as well as fewer Emergency Room visits (p < .0001). All were improved compared with the same time period from the previous year, but outcomes worsened significantly again after lockdown (cACT median: 22). CONCLUSIONS: During the national lockdown, children with persistent preschool wheeze showed a significant clinical improvement with reduction of respiratory symptoms, medication use for exacerbations, and use of healthcare resources. This trend reversed when lockdown restrictions were eased.