key: cord-0694244-e3up8w7p authors: Maaskant, J.M.; Jongerden, I.P.; Bik, J.; Joosten, M.; Musters, S.; Storm-Versloot, M.N.; Wielenga, J.; Eskes, A.M. title: Strict isolation requires a different approach to the family of hospitalised patients with COVID-19: A rapid qualitative study date: 2020-12-24 journal: Int J Nurs Stud DOI: 10.1016/j.ijnurstu.2020.103858 sha: fa1760337d89f3bb5513b0353b35abd39af4fb8d doc_id: 694244 cord_uid: e3up8w7p BACKGROUND: The outbreak of the COVID-19 pandemic influenced family-centred care dramatically due to restricting visiting policies. In this new situation, nurses were challenged to develop new approaches to involve family members in patient care. A better understanding of these changes and the experiences of nurses is essential to make an adaptation of procedures, and to secure a family-centred approach in care as much as possible. OBJECTIVES: The aim of this study was to investigate how family involvement had taken place, and to explore the experiences of nurses with family involvement during the COVID-19 outbreak. In addition, we aimed to formulate recommendations for the involvement of family. METHODS: We conducted a qualitative study using patient record review and focus-group interviews between April and July 2020. We reviewed records of patients with confirmed COVID-19, who were admitted to the COVID-19 wards at two affiliated university hospitals in the Netherlands. All records were searched for notations referring to family involvement. In two focus-groups, nurses who worked at the COVID-19 wards were invited to share their experiences. The Rigorous and Accelerated Data Reduction (RADaR) method was used to collect, reduce and analyse the data. RESULTS: In total, 189 patient records were reviewed and nine nurses participated in the focus-group meetings. Patient records revealed infrequent and often unstructured communication with focus on physical condition. Nurses confirmed that communication with family was far less than before and that the physical condition of the patient was predominant. The involvement of family in care was limited to practicalities, although more involvement was described in end-of-life situations. Nurses experienced moral distress due to the visiting restrictions, though some acknowledged that they had experienced the direct patient care so intense and burdensome, that family contact simply felt too much. CONCLUSION: The communication with and involvement of family in hospital care changed enormously during the COVID-19 outbreak. Based on the identified themes, we formulated recommendations that may be helpful for family-centered care in hospitals during periods of restricted visiting policy. In the Netherlands, the first COVID-19 case was confirmed on 72 27 February 2020. The rapid spread of the disease resulted in 73 a so-called "intelligent lock down". Social distancing rules were 74 strongly advised. All citizens were requested to stay at home as 75 much as possible, not to shake hands, and to keep at least 1.5 m 76 distance from other people. Restaurants, schools, gyms and contact 77 professions such as hairdressers were closed for approximately 78 three months ( De Haas et al., 2020 The permanent nursing staff was temporarily complemented with 100 nurses from other wards to fulfil the increased patient-nurse ratio. 101 Adult patients ( ≥18 years) with a confirmed COVID-19 infection, 102 who were admitted to one of the COVID-19 wards, were eligible 103 to be included in our study. For the focus-groups, we invited 104 purposively nurses who had worked for at least four days on one 105 of the COVID-19 wards during the study period. The nurses were 106 approached by email, explaining the aim and practical details of 107 the focus-group interviews. 108 109 We used the Rigorous and Accelerated Data Reduction (RADaR) 110 technique to collect, reduce and analyse the qualitative data 111 ( Watkins, 2017 ) . The RADaR technique consists of the following 112 consecutive steps: (1) data collection, (2) coding the information, 113 (3) reduction, and (4) 118 We used two sources of data; first, we reviewed patient 119 records, followed by focus-group interviews with nurses. We made 120 a random selection of 200 patients admitted to one the COVID-19 121 wards between 23 March and 26 April 2020. These patient records 122 were searched for notations referring to family involvement. Only 123 the COVID-19 admission period was reviewed; when a patient was 124 admitted to the ICU, this period was excluded. To support data 125 collection, we constructed easy-to-use tables that structured the 126 data per patient per day. The data collection tables were pilot-127 tested by two researchers (JM, AE) through collecting data from 128 five patient records independently. Discrepancies in interpretation 129 were resolved through discussion. 130 A team of 11 senior and junior researchers collected the data. 131 All researchers were nurses familiar with the electronic patient 132 records. Each researcher received a short manual. During an online 133 meeting, additional instruction was given to familiarize the team 134 with the research question, methods and data collection forms. 135 A second meeting was organized after one week to discuss un-136 certainties and to establish consistency in reviewing the patient 137 For the coding of the extracted patient records data, the 160 original data collection forms were adapted by adding a column. 161 To facilitate the coding, a preliminary list of codes was con- an iterative way, keeping the research question in mind. Trends 201 in the data and striking issues were discussed and summarized 202 in categories. In consensus meetings, the identified categories 203 of information were critically examined and overlapping issues 204 were further refined and reduced into main themes. Quotes from 205 the patient records and focus-groups that illustrated the themes 206 were earmarked. In addition, preliminary recommendations were 207 formulated. 208 2.5. Validation 209 We documented all stages of the study and its procedures 210 to achieve transparency and coherence regarding the study data 211 and the interpretations. The researchers crosschecked the data as 212 described above. The preliminary results of the patient records 213 analyses were checked in the focus-group interviews to increase 214 validity. The researchers gathered and processed feedback and 215 additional information from the research group during every stage 216 of the study. We included 189 patients who were admitted to one of the 220 COVID-19 wards during the study period ( Table 1 ) . Eleven patients 221 were excluded, as COVID-19 was not confirmed. In total, 120 of 222 the patients (64%) were male and the mean age was 63 years (SD 223 13). The median duration of the primary admission on a COVID-19 224 ward was five days (IQR 3.0-11.8). In total 49 patients (26%) were 225 transferred to the ICU, which extended the hospital length of stay 226 to nine days (median, IQR 5-14). Sixteen patients (8%) died on a 227 COVID-19 ward and 13 patients (7%) were readmitted after initial 228 hospital discharge. Subsequently, nine nurses participated in the 229 online focus-group interviews, representing all COVID-19 wards in 230 the two affiliated hospitals. Most nurses were female (89%), with 231 a median age of 32 (range 23-56) and median work experience of 232 nine years (range 2-22). Six nurses worked permanently on one 233 of the four COVID-19 wards, two nurses occasionally when there 234 were nurse shortages. One nurse was not directly involved in 235 patient care, but pro-actively contacted families to give an update 236 about the patient's condition. 237 Analysis of the qualitative data from both the patient record 238 review and the focus-group interviews identified several themes 239 concerning family involvement in the care. Data from the focus-240 groups revealed an additional theme: nurses' emotions and 241 dilemmas. We present a narrative description of the themes, 242 along with supporting quotes. Both the patient records and the 243 focus-groups revealed barriers for family-centred care. These were 244 used to formulate recommendations, which we present in Table 2 . 245 246 Contact between family and healthcare professionals was 247 mainly made through video or telephone calls. The person who 248 made contact and the frequency were organized differently per 249 ward, and changed over time. Most units had unstructured com-250 munication with family, often depending on individual actions of 251 the family or the bedside nurse. Additional contact was provided 252 by dedicated nurses or support teams. These teams consisted of 253 nurses and physicians not involved in direct care, who had access 254 to patient records and handovers. The support teams pro-actively 255 contacted the family at least once a day to provide an update 256 on the patients status. In the focus-groups the nurses told us 257 that they had no involvement or input with the information 258 conveyed when other others took over the contact with the 259 family. They knew of these contact moments, but were unaware 260 283 In patients with language barriers, either family members were 284 asked to translate, or colleagues who mastered the language. The 285 usage of professional translation facilities was rarely mentioned. 286 "Communication with Mrs. is difficult. Her daughter acted as 287 interpreter this morning, which gave more clarity about how 288 Mrs. felt." (Patient ID 084) 289 We noticed an increase in notes about the communication 290 with the family when the care became more complex. This was 291 especially prevalent when the patient deteriorated and was moved 292 toward palliative care; documentation of the conversation with 293 patient and family was given more attention, such as options 294 for palliative care and preferences of patient and family towards 295 end-of-life care. 296 An important precondition for contact between patients, their 297 families and/or healthcare professionals was the availability of 298 (working) telephones and tablets and skills to use them. On all 299 wards, these devices were distributed; however, nurses were not 300 always aware of the availability. In addition, lack of skills to make 301 video calls was hampering the communication. If the bedside healthcare professional cannot guarantee the communication with the family, give this task to dedicated healthcare workers (support teams). Try to organize scheduled time to contact the family by nurses who care for the patient. Focus on physical condition. Do not limit the conservation to physical condition of the patients, but also talk about the psychological, social and spiritual aspects. Provide instruction on how video calling best can be performed, e.g. make an agenda, limit the conversation to the main topics, encourage story telling. Consider to use a communication framework, e.g. CALMER (Check in, Ask, Lay out issues, Motivate, Emotions, Record). Use the Teach Back method. Mask hiding the face of the healthcare professional. If possible make the video call from a place, where wearing a mask is not necessary. If protection materials are required, use pictures and nameplates, so the family gets an idea whom they are talking to. Family and/or patient have a different primary language as the healthcare professionals. Make use of translation services. Be reluctant to use family members as official translators. Videocalling considered too confrontational. Start the video call outside the patient's vision and prepare the family on the patient's situation. Check the emotional condition of the family during the conversation. Family involvement in care Patients all look the same. Use the possibility of proxy-anamneses at admission. Ask family members to describe the patient's life, life events, and important people. Also, learn about the patient's favorite food, music, television preferences. Use video calling or pictures to show the patient's environment to the family. This information facilitates conversation between healthcare professionals and patient. Family involvement limited to practicalities. Explore the wishes the involvement of the family in the care, and try to facilitate this as much as possible. No role of the family in situation of delirium and anxiety. Encourage family to bring personal belongings of the patient to the hospital: children's drawings, religious items, pictures. Help the patient and encourage the family to send audio, video or written messages to each other. Consider the use of a diary. Limited attention for religious and cultural aspects. Family experiences feeling of stress and anxiety. Assess the psychological situation of the family. Include discussion relating to stress and anxiety as part of the communication, and organize support if needed, e.g. by a family support team. Nurses' personal experiences and dilemmas Nurses experience conflicts and dilemmas, and feel dissatisfied with their profession Organize daily moments of reflection, intervision or supervision. Stimulate nurses to discuss their experiences of the day. Ensure nurses feel supported, organize professional help or peer support if needed. Nurses expressed ambiguous feelings about the possibility 374 of family being present on the ward. Although they realized 375 this was very important for patients and their families, they 376 were also aware of the risks. They expressed concerns about the 377 health of the family, especially when they noticed the visiting 378 family did not act strictly according to the infection control 379 policy. Beside the heavy workload demands of caring for a 380 COVID-19 patient, nurses expressed having family present felt too 381 much. "The disease was unknown to us, there was so much uncertain. 383 Most of the time you needed to focus really well. You did not 384 have time for family to be around." (Nurse, focus-group 2) 385 On the other hand, nurses felt it as unacceptable to refuse a 386 family to the ward when the patient had become terminally ill. 387 "It is against your feelings. Someone in the last phase of his 388 life, and we had to tell that only one or 2 family members 389 were allowed to come. We made exceptions though, yes, we 390 did, maybe too often." (Nurse, Focus-group 1) 391 Nurses were aware of the seriousness of the patients' situations 392 and were therefore sometimes reluctant to organize video calls be-393 tween patients and family. They expected seeing the patient in this 394 situation would be frightening and worrying for the family. Others 395 still organized video calls, and noticed that patients and families 396 were grateful and happy, even if the patient looked exhausted. 397 "At first I thought it would be very confronting and worrisome 398 to see him on screen with an oxygen mask. However, when I 399 saw how family and patient reacted; I felt that they were not 400 more concerned, but more reassured. ……. They enjoyed seeing 401 each other." (Nurse focus-group 2) 402 Nurses expressed feelings of depersonalization. With the focus 403 on the physical condition of the patients COVID-19 symptoms, 404 all patients looked more or less the same to the nursing staff. In 405 addition, nurses themselves found it difficult to recognize each 406 other due to the protective clothing. 407 "What I noticed was that we all started to see the patients as 408 the same kind of persons, and that the attention was mainly 409 paid to things like oxygen, saturation, and breathing. Everything 410 else, which is also part of the patient, like pressure sores or the 411 social situation or other underlying problems, had disappeared 412 to the background." (Nurse, focus-group 1) 413 4. Discussion 414 We aimed to investigate how family involvement had taken 415 place, and to explore the experiences of nurses with family in-416 volvement during the COVID-19 outbreak. Our findings show that 417 the COVID-19 pandemic had a major impact on family-centred 418 inpatient care. The communication with family seemed less than 419 before and the physical condition of the patient was the focus 420 Family support may become even more important when the 508 patient is discharged home where the family often have an 509 important role in the recovery and rehabilitation ( Desai et al., 510 2015 ) . As most patients with COVID-19 need care after discharge, 511 the engagement and support of the family during transitions is 512 crucial. Although strong evidence is lacking due to the novelty of 513 illness, this may be done by earlier described interventions such 514 as individualized discharge plans, transitional needs assessments 515 and family tailored discharge education ( Desai et al., 2015 , Mallory 516 et al., 2017 ). As bedside teaching is impossible, new education 517 materials such as instruction videos and e-Learnings must be 518 developed ( Frentsos, 2015 ) . 519 In addition to these results, we also found that the visiting 520 restrictions caused moral distress and ethical dilemmas to some 521 nurses. Moral distress can be described as the negative experience 522 of psychological imbalance related to a moral dilemma ( Morley 523 et al., 2019 ). This may occur when nurses cannot fulfil their moral 524 obligation to a patient, such as delivering the best care possible, 525 or fail to pursue what they believe to be the correct course of 526 action caused by forces that are out of their control ( Mehlis et al., 527 2018 ) . In this study, nurses often felt that the absence of families 528 on the ward resulted in reduced quality of delivered care (e.g. in 529 situations of delirium and anxiety) and found it hard to cope with 530 (e.g. in end-of-life situations). A systematic review about nurses' 531 experiences during pandemics shows that the rapid changes of 532 policies and guidelines, increases the stress levels among nurses, 533 who are already very busy ( Ferandez et al., 2020 ). In addition, 534 the lack of preparedness of the organization in terms of staffing, 535 protocols and personal protection equipment is seen as burden-536 some for bedside nurses ( Ferandez et al., 2020 ) . The nurses in our 537 research also described quickly changing protocols and working 538 with very strict personal protection rules were burdensome. 539 Communication with and involvement of the family during so-540 cial distancing rely on the availability of computers, smartphones 541 or tablets, stable internet access and technological literacy. One 542 should be aware of differences between families, e.g. age and 543 socioeconomic status, access and skills to electronic devices and 544 internet ( Smith and Magnani, 2019 ). In order to avoid health dis-545 parities, it is essential to find solutions when barriers exist. Privacy 546 considerations must also be taken into account. The security of 547 technology and technology platforms, compliant with the privacy 548 legislation must be prioritized when video calls become part of 549 our care ( Wierda et al., 2020 ) . NS [mNS Information on the physical condition of the family members. 665 15. 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Furthermore, we want to thank Elizabeth Elder, 600 School of Nursing and Midwifery Griffith University Australia, for 601 checking the English language.