key: cord-0793805-7t4n0q4o authors: Brauchle, Maria; Nydahl, Peter; Pregartner, Gudrun; Hoffmann, Magdalena; Jeitziner, Marie-Madlen title: Practice of Family-centred Care in Intensive Care Units before the COVID-19-Pandemic: a cross-sectional analysis in German-speaking countries date: 2021-09-07 journal: Intensive Crit Care Nurs DOI: 10.1016/j.iccn.2021.103139 sha: dfb8c50dfe4db1820b76ca4be542b0f7a48098e5 doc_id: 793805 cord_uid: 7t4n0q4o OBJECTIVES: To provide insights into visiting policies and family-centred care practices with a focus on children as visitors in Intensive Care Units (ICUs) in German-speaking countries. METHODS/ DESIGN: Online-survey with a mixed approach were used. Leading clinicians (n=1,943) from German-speaking countries were invited to participate. Outcomes included the percentage of ICUs with open visiting policies, age restrictions, family-centred care activities and barriers. SETTING: Paediatric, mixed and adult ICUs. RESULTS: In total, 19.8% (n=385) of the clinicians responded. Open visiting times were reported by 36.3% (n=117), with significant differences between paediatric (79.2%), adult (21.3%) and mixed-age (41.2%) ICUs (p<001). Two-thirds of clinicians stated that their ICUs had no age restrictions for visiting children as visitors (n=221, 68.4%). The family-centred care activities most frequently implemented were open visiting times and dissemination of information. Significantly more German ICUs have open visiting policies and more Swiss ICUs allow children as visitors, compared to the other countries (both p<0.001). Barriers to family-centred care were concerns about children being traumatized, infection and workload. CONCLUSION: The majority reported that family-centred care policies had been implemented in their ICUs, including open visiting policies, allowing children as visitors without age restriction and other family-centred care activities. The role of the families of patients in Intensive Care Units (ICUs) has changed in recent decades. Since 1970 there has been a shift from disease-centred care, including the passive roles of patients and families, towards involvement in treatment and decision-making (Olding et al., 2016) . In 2007, a guideline for patient-centred care was published by the American College of Critical Care Medicine Task Force, focusing on the active participation of patients in their care (Davidson et al., 2007) . This approach was extended to families in subsequent years family-centred care as an approach "that is respectful of and responsive to individual families' needs and values", and the term family as "individuals who provide support and with whom the patient has a significant relationship" (Davidson et al., 2017) . Additionally, in the paediatric setting, family-centred care contributes to "mutually beneficial partnership among patients, families, and providers", which recognizes the importance of families for the children (Abela et al., 2020; Meert et al., 2013) . In general, a patient's family can consist of genetically related persons, close friends and others (Gibson et al., 2012) . Societies such as the British Association of Critical Care Nurses (BACCN) and others support family-centred care and encourage implementation (Davidson et al., 2017; Gibson et al., 2012) . The approach to family members in ICUs can be complex, including aspects of co-suffering, potential roles or burden. As immediate social contacts of the patients, family members often suffer from critical illness too, and are at high risk for anxiety, depression, post-traumatic stress disorder (PTSD) or complicated grief, known as post-intensive care syndrome-family (PICS-F) ( Yuan et al., 2020) . The prevalence of long-term sequelae in family caregivers ranges from 4% to 94% for depression, 2% to 80% for anxiety, and 3% to 62% for PTSD. Family members can be seen as part of the team, can offer support to patients and staff and play an important part in the decision-making process (Donovan et al., 2018; Luce, 2010; Pingatiello et al., 2018; White et al., 2007) . Family members may be perceived as a burden for patients and staff, as a source of avoidable microbiological contamination, or as initiators of violence or legal complaints against healthcare providers and the team (Athanasiou et ICUs. Data about practical aspects of family-centred care and related visiting policies in adult and paediatric ICUs are limited. Therefore, the aim of the present study is to gain insights into visiting policies and familycentred care practices with a focus on children as visitors in paediatric, mixed and adult ICUs, in Germanspeaking countries in Europe (Austria, Germany, Luxembourg and the German-speaking part of Switzerland) prior to the Covid-19 pandemic. A mixed approach using quantitative and qualitative methods was used. The report on this survey complied with the guidelines for conducting online surveys (Eysenbach, 2004) (supplementary table E3 The questionnaire comprised different categories. Sociodemographic data included country, profession, age (in categories), place of work, management responsibility, years of experience, and whether the respondents have children of their own. ICU data included type of hospital, discipline, age of patients, and number of beds in the hospital and ICU(s), mean admissions per year, mortality, length of ICU stay, and presence of an intensive-care specialist. We asked about several aspects of the implementation of family-centred care practices, using a 3point Likert-type scale ("fully", "partly" or "not at all implemented"), and about visiting hours per day. In addition, local policies regarding children as visitors were recorded, including age limits, hygiene and other requirements, specific structures and processes. The adapted questionnaire was pretested as a pilot survey online by 33 international clinicians with different levels of experience. The result was a refinement of the wording in a structured process. The order of items in the online questionnaire differed from the order of presentation in this publication, and the questions were not adaptive or randomised. Here, they are listed by the hierarchical number of answers. The closed invitation to participate in the questionnaire was sent to 1,943 leading clinicians (senior physician, 6 Categorical data are reported as absolute and relative frequencies, whereas metric parameters are summarized using medians and first and third quartiles (interquartile range, IQR). Reported percentages always pertain to the number of non-missing answers. Attitude towards children as visitors consisted of eight items, each answered with "no", "rather no", "rather yes", or "yes", coded from 1 to 4. We calculated a sum score from these eight items, inverting the coding for several items such that higher values indicate a more positive attitude towards children as visitors (32 points = maximum positive attitude). Differences between groups were assessed using Fisher's exact test for categorical data or the Mann-Whitney U-test or Kruskal-Wallis test for metric data, respectively. The overall significance level was 5%. The statistical analyses were performed with R version 3.6.1. In total, 385 (at most 19.8%) clinicians answered the questionnaire with a completion rate of 89.3% (n=344). Most respondents (n=193, 50.3%) worked in university and academic hospitals. The country with the most responses was Germany (n=151, 39.2%). The median (IQR) reported hospital bed capacity was 380 (205-783) beds. Respondents were mainly from ICUs specialized for adults (n=280, 72.7%), but also from mixed-age (n=21, 5.5%) and paediatric (ages 0-17 years, n=79, 20.5%) ICUs; five respondents (1.3%) did not disclose this information. The participants' ICUs were most often of mixed disciplines (n=263, 69.0%), had a median (IQR) of 10 (8-16) ICU beds, 800 (500-1368) ICU admissions per year, a 4-day (3-6.4) length of stay in the ICU, and 5 (2.5-10) per cent mortality. An intensive-care specialist was reported to be present during the whole day by 328 (85.9%) participants ( The median visiting hours of visitor-restricting ICUs were 6 (4-8) hours, with significantly more visiting hours in paediatric ICUs (adult ICUs 5 (4-8) hours, mixed-age ICUs 5 (3.3-9.5) hours and paediatric ICUs 21.5 (14.5-22) hours, p<0.001). Significantly fewer clinicians reported that visiting children have to provide evidence of being free of transmissible illnesses in adult ICUs (2.4%) compared to mixed-age ICUs (31.6%) or paediatric ICUs (29.2%) (p<0.001). Most respondents who provided this information reported that their ICUs had no age restrictions for visitors (n=221, 68.4%). There were significant differences regarding ICU specialization (adult ICUs 62.0%, mixed-age ICUs 68.8% and paediatric ICUs 90.0% unrestricted, p<0.001). In ICUs with age restrictions (n=102, 31.6% of 323 answers provided) the median (IQR) minimum age for visiting was 12 (7.2-14) years, with no significant differences between the different specializations (adult ICUs 12 (7) (8) (9) (10) (11) (12) (13) (14) years, mixed ICUs 8 (7-12) years and paediatric ICUs 12 (7) (8) (9) (10) (11) (12) (13) (14) years, p=0.423). Children were accepted as visitors without age restrictions in more ICUs in Switzerland (80.9%, n=89) than in Germany (56%, n=70) (p<0.001). Clinicians reported having adopted a family-centred care approach by fully implementing the following (top three responses that were not "other"): disseminating information and providing support to families regarding ways to assist with the care of their loved ones (n=166, 46.5%), open visiting (n=161, 45.0%), and patient and/or family ICU diaries (n=100, 27.8%) ( Table 2 : Family-centred care practices). INSERT TABLE 2 "Extent to which family-centred care practices have been adopted in the ICU" HERE Regarding the implemented structures and processes, some ICUs provide toys for visiting children (n=94, 24.4%), or have adults in attendance during the visit (n=246, 63.9%) ( Table 3 In the open questions, respondents reported the following major barriers: concerns about the possible traumatization of the children when they see the patient, concerns about the mutual risk of infection, and increased workload of ICU staff when a child comes to visit the patient. The main facilitators to improving familycentred care practices reported by the respondents were convincing evidence, education and communication. In this survey about the practice of family-centred care involving nearly 400 critical care clinicians, carried out in autumn 2019 and before the Covid crisis, we found that there are differences in visiting policies between adult 8 and paediatric ICUs. Over one third of respondents stated that their ICUs were open 24/7, with significantly more open ICUs in the paediatric setting. More than half of respondents' ICUs had no age restrictions for visiting children. The most widely implemented practical aspects of family-centred care were open visiting models, the provision of information, dissemination, and other tools. Most respondents had a positive attitude towards children as visitors and mentioned specific processes and structures for enabling visits. Country-specific aspects may have an effect on the attitude of clinicians. The low response rate of 20% raises some questions. In general, survey response rates above 60% are considered to be reliable in enabling valuable insights (Eysenbach, 2004) . The response rate in the present survey is much lower. We calculated the minimum number of ICUs that would be representative of all ICUs with a 95% confidence interval and found a minimum of 321 ICUs; the number in our survey is much higher. On the other hand, the ICUs were not selected on a randomized basis, leading to a likely recruitment bias and overestimation of the implementation rate. The WFSICCM's survey was conducted using a snowball system and included 345 ICUs from 40 countries; it was not able to calculate a response rate but was published in a high-ranking journal. Our survey had fewer countries and even more ICUs, used a more stringent method, but had a low response rate (Kleinpell et al., 2018) . A recruitment bias seems to be likely and should be considered when interpretating the results. Many ICUs switched to video telephony. Most ICUs have moved to an active family phone call led by the physician or the nurses at least once a day (Hwang et al., 2021) . However, this crisis shows how important and essential the integration of families in the ICU is. Unfortunately, it also shows how great human suffering is when nobody from the family can be there for the patients (Kentish- Barnes, 2021) . Distributing information about ICUs on the internet for relatives (Hoffmann et al, 2019) and offering a reliable flow of information via (video) telephony may be a lifeline for relatives in these times of crisis. Hopefully, the Covid-19 crisis represents a chance to begin new and intensive discussions about visiting times and caring for families, and not the opposite (Azoulay et al., 2021) . The study has the strength of providing an extensive overview because it was addressed to all existing ICUs in German-speaking countries. As far as the authors know, this is the only study that analysed visiting policies and family-centred care in German-speaking countries prior to the Covid-19 pandemic. Therefore, these data can be used in post-pandemic comparative data. The main limitations, however, are the low response rate and a possible recruitment bias of visitor-positive clinicians. Therefore, we cannot make statements about the distribution of the ICUs but rather of the respondents themselves. The total number of 385 respondents provides valuable insights, but it is questionable whether the results can be generalized to all ICUs. The questionnaire has not been tested for reliability, and a repeated These policies are adapted to multiple factors, especially national structures, processes and culture, leading to heterogeneous implementation and making comparison challenging. In adult ICUs, most participating clinicians allowed children to visit without any age restrictions. In adult ICUs with age restrictions, teenagers but not younger children were allowed as visitors. The majority reported some degree of family-centred care activities. Clinicians in all settings expressed the ambiguity of the possible harm to and benefits for children as visitors, with nurses having a more positive attitude. The heterogeneous results between countries and settings stimulate 11 reflection on our own practices and policies. The different implementation of family-centred care practices can be explained by different healthcare systems, cultures and, to some extent, structures and processes. To provide insights into visiting policies and family-centred care practices with a focus on children as visitors in Intensive Care Units (ICUs) in German-speaking countries. Online-survey with a mixed approach were used. Leading clinicians (n=1,943) from German-speaking countries were invited to participate. Outcomes included the percentage of ICUs with open visiting policies, age restrictions, family-centred care activities and barriers. Paediatric, mixed and adult ICUs. 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