Tailored Psychoeducational Home Interventions for Children with a Chronic Illness: Families' Experiences.

The quality of life for a child with a chronic illness depends on various factors, including the illness's severity, medical treatments, psychosocial and educational support, resource availability, and community involvement. These biopsychosocial factors become significant when the child receives care at home. This article presents and evaluates a highly personalized support project offered to 40 Sicilian families, consisting of educational, social, and psychological services delivered at the families homes and in their communities. Guided by the Psychosocial Assessment Tool (PAT) and the Functional Psychology framework, the project employed a family-focused approach to healthcare and was based on a continuous dialogue between all stakeholders. The project was evaluated through a qualitative interview with eight families in the Palermo area, which was analyzed using consensual qualitative research. Results revealed families' appreciation of the project and the importance of a professional who listened to their needs, provided a connection with the medical team, and tailored activities inside and outside the home. The ability of professionals to listen and adapt activities to different contexts and needs was crucial for the project's success. We conclude that creating tailored family-level interventions with an educator acting as a liaison with the medical team is a widely acceptable strategy that should be further developed and investigated.

The impact of COVID-19 on palliative care social work: An online survey by a European Association of Palliative Care Task Force.

BACKGROUND: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. AIM: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic. DESIGN: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses. SETTING/PARTICIPANTS: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network. RESULTS: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries. The full range of social work services could no longer be delivered, existing services changed and 65.3% of participants reported higher levels of pressure during the pandemic, which was linked to higher levels of staff absence and additional duties. For many respondents (40.8%), this included facilitating online communication between patients and their families. CONCLUSIONS: Our findings indicate that restrictions to limit the spread of COVID-19 resulted in adaptations to service delivery, increased pressure on staff and moral distress, like other health and social care professions. All members of the palliative team need support and supervision to ensure effective interdisciplinary working and team cohesion.

Caregiver Distress in Home Palliative Care.

Aim: This study aims to determine the symptom burden of caregivers who were following their loved ones at home and factors associated with this burden. Methods: From a consecutive number of patients followed at home by a specialistic palliative care team, a sample of 46 couples of patients-caregivers was screened. Epidemiological data of both patients and caregivers were collected, also including some variables, such as the level of religiousness, education, economic conditions, and financial distress. The Edmonton Symptom Assessment System (ESAS) was measured in both patients and caregivers. Caregivers were asked to provide a comment in a semi-structured interview, about "what do you think of your loved one's suffering?" They were also invited to release any further comment. Results: Caregivers' symptom burden was relevant. Sleep disturbances were even more relevant in caregivers. Caregivers with a lower level of education and financial distress experienced more global symptom burden. Caregivers manifested a deep sense of injustice and gripes regarding previous hospitalizations. Conclusion: There is an association between patient-reported severity of symptoms and caregiver symptoms. These data suggest delivering support to those caregivers who express higher levels of symptoms. There is a need for further research to explore the possible interventions to mitigate caregivers' symptom burden.

Palliative Care in the Time of COVID-19.

After COVID-19 crisis in Italy, serious restrictions have been introduced for relatives, with limitations or prohibitions on hospital visits. To partially overcome these issues "WhatsApp" has been adopted to get family members to participate in clinical rounds. Family members of patients admitted to the acute palliative care unit and hospice were screened for a period of two weeks. Four formal questions were posed: 1) Are you happy to virtually attend the clinical round? 2) Are you happy with the information gained in this occasion? 3) Do you think that your loved one was happy to see you during the clinical rounds? 4) This technology may substitute your presence during the clinical rounds? The scores were 0 = no, 1 = a little bit, 2 = much, 3 = very much. Relatives were free to comment about these points. Sixteen of 25 screened family members were interviewed. Most family members had a good impression, providing scores of 2 or 3 for the first three items. However, the real presence bedside (forth question) was considered irreplaceable. They perceived that their loved one, when admitted to hospice, had to say good-bye before dying.