Table 3.
Themes and contents provided by family caregivers (FG1).
| Information |
| Before patient admission in hospital |
| • Need for accurate non-contradictory information on hygiene and safety (e.g., how to use the oximeter, take body temperature, adopt kitchenware) |
| During hospitalization |
| • Need for information on the most suitable ways of obtaining news about the patient (e.g., telephone, smartphone, email) |
| • Opportunity to receive a summary sheet for contacts (e.g., telephone numbers, e-mails, web sites, names of personnel for reference) |
| • Need for frequent scheduled news about the patient (e.g., once a day, including doctor’s overall impression on patient’s general condition, physical status, mood and psychological response) |
| After discharge |
| • Need for information about where to find and how to use the oxygen cylinder, about oxygen dosages (if needed) |
| • Opportunity to receive a complete treatment plan taking into account comorbidities and previous therapies (e.g., ‘My mother was told not to take the drugs she usually took. When she returned home she did not know if she should resume her therapies immediately or whether they could interfere with the drugs she had taken during hospitalization..’ |
| After death (where relevant) |
| • Need for reassurances that everything possible had been done for the patient and that he/she was not left alone at the time of death |
| Communication |
| Between patient and family caregivers |
| • Difficulty in communicating at a distance only, especially when the hospitalization is prolonged |
| • Difficulty or inability to use the telephone by elderly patients |
| • Inability to see the patient on video-call when he/she is no longer able to collaborate |
| Between family caregivers and healthcare personnel |
| • Need for a proactive, regular communication characterized by sensitivity and humanity |
| • Need for a phone number to find the referring doctor and receive a daily report about the patient, ask questions and obtain explanations |
| Proposal to facilitate communication |
| • Equip the COVID-19 wards with a wi-fi network accessible to patients |
| • Equip the COVID-19 wards with cables for charging cell phone batteries |
| • Equip the COVID-19 wards with a person that will help the elderly, especially those suffering from dementia, use devices they cannot use on their own so they can communicate with family members |
| • Provide the patient with familiar objects to give comfort and maintain intimate bonds with the family |
| Practical Burden |
| Assistance during hospitalization |
| • Difficult simultaneous remote management of the hospitalized patient and his/her cohabiting family members that remain at home |
| • Difficulty in getting the things to the patient (e.g., having information on hygiene and safety rules for the clean linen to be delivered to the patient) |
| Assistance before and after hospitalization |
| • Difficulty in obtaining COVID-19 tests for asymptomatic family members living with the patient |
| • Difficulty in getting COVID-19 elderly patients living alone to properly adhere to treatments |
| • Poor interaction between patient/ family members and the general practitioner (not in all cases) |
| • Poor integration between emergency personnel and the general practitioners |
| • Difficulty in organizing home assistance after discharge (e.g., ‘The interaction with the health care system was difficult regarding the planning of the treatment plan.. It was not clear who I should talk to.. And furthermore having to do everything by phone..’) |
| Financial issues |
| • Extraordinary expenses for specialist visits, home assistance and paid ambulance transport |
| • Lost or reduced earnings due to time off work |
| Daily living |
| • Difficulty in shopping and finding medicines (especially if family members are quarantined) |
| • Difficulty in reorganizing coexistence within the family (e.g., do not leave the discharged patient or the deceased patient’s spouse alone) |
| • Take over the patient’s workload |
| • Increased domestic activities when family members are quarantined |
| Psychological burden |
| Distress and symptoms |
| • Sleep disorders |
| • Fear of having difficulty in concentrating |
| • Anxiety, worry, crying fits |
| • Despondency toward caring for the patient at home |
| • Feelings of guilt for neglecting family members other than the patient |
| Emotional difficulty in relating with the patient |
| • Not being able to reassure the patient about the final outcome |
| • Not being able to manage the patient’s fears, crying fits, feelings of hopelessness and death anxiety |
| Needs for supportive care |
| • Need for psychological support by phone |
| • Need for counselling about relaxation techniques (e.g., autogenic training, yoga exercises) |
| • Need for spiritual accompaniment |