Editor's view

In the article, the author discusses the challenges in the decision making and advance care planning on critical care admission of patients living with dementia. Also cited are the poor understanding of the public of critical care, the effectiveness of using natural language processing of unstructured records and machine learning to identify those at risk of subsequent falls, and the recommended fall prevention strategies like Tai Chi.

Frontline Workers in the Backrooms of COVID-19.

OBJECTIVES: To review the response to the coronavirus disease 2019 (COVID-19) pandemic in a forensics center that integrates an academic department of pathology with multiple regional county medical examiners' offices. METHODS: Faculty and staff were asked to volunteer stories, data, and photographs describing their activities from March through May 2020. The information was assembled into a narrative summary. RESULTS: Increased deaths challenged capacity limits in a hospital morgue and a large urban medical examiner's office (MEO) successfully managed by forensic teams and monitored by an institutional command center. Autopsies of suspected and proven cases of COVID-19 were performed in both facilities. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) testing of decedents was performed in a MEO serving a large urban area. Scene investigators worked directly with families to meet needs unique to a pandemic. Artful photographs of decedent's hands and/or tattoos were offered to those unable to have in-person viewings. Pathologists and social workers were available to families of the deceased and created novel solutions to facilitate the grieving process. CONCLUSIONS: Forensic pathology is important to successfully navigating emerging diseases like the COVID-19 pandemic. Direct conversations with families are common in forensic pathology and serve as a model for patient- and family-centered care.

Benefits and Challenges of a Telehealth Eating and Mealtime Intervention for Autistic Children: Occupational Therapy Practitioners' Perspectives.

Eating and mealtime challenges are common in autistic children, yet intervention access is limited. Telehealth may provide opportunities to address this gap and increase access for underserved families. This study examined the occupational therapy practitioner's perceptions of transitioning from a caregiver-mediated, in-home eating, and mealtime intervention for autistic children to telehealth owing to COVID-19 while considering the impact on accessibility, challenges, and benefits. Family characteristics were compared between groups. Thematic analysis of semi-structured interviews explored practitioners' experiences of telehealth. Statistical findings and themes were directly compared and contrasted. The following three themes emerged: Intervention Adaptations, Challenges for Interventionists, and Benefits of Telehealth. The differences in the families' geographic location were identified. Themes and family characteristic differences supported increased intervention accessibility for the telehealth group. This study provides preliminary evidence that telehealth can increase access to specialized services. There are benefits and challenges to implementing telehealth with families and autistic children.

Virtual family-centered rounds: a quality improvement initiative to adapt inpatient care during COVID-19 using a human-centred participatory design approach.

BACKGROUND: Family-centered rounds (FCR) are fundamental to pediatric inpatient care. During the COVID-19 pandemic, we aimed to design and implement a virtual family-centered rounds (vFCR) process that allowed continuation of inpatient rounds while following physical distancing guidelines and preserving personal protective equipment (PPE). METHODS: A multidisciplinary team developed the vFCR process using a participatory design approach. From April through July 2020, quality improvement methods were used to iteratively evaluate and improve the process. Outcome measures included satisfaction, perceived effectiveness, and perceived usefulness of vFCR. Data were collected via questionnaire distributed to patients, families, staff and medical staff, and analyzed using descriptive statistics and content analysis. Virtual auditors monitored time per patient round and transition time between patients as balancing measures. RESULTS: Seventy-four percent (51/69) of health care providers surveyed and 79% (26/33) of patients and families were satisfied or very satisfied with vFCR. Eighty eight percent (61/69) of health care providers and 88% (29/33) of patients and families felt vFCR were useful. Audits revealed an average vFCR duration of 8.4 min (SD = 3.9) for a single patient round and transition time between patients averaged 2.9 min (SD = 2.6). CONCLUSION: Virtual family-centered rounds are an acceptable alternative to in-person FCR in a pandemic scenario, yielding high levels of stakeholder satisfaction and support. We believe vFCR are a useful method to support inpatient rounds, physical distancing, and preservation of PPE that may also be valuable beyond the pandemic. A rigorous process evaluation of vFCR is underway.

Parent Satisfaction With a Telehealth Parent Coaching Intervention to Support Family Participation.

COVID-19 catalyzed telehealth practice creating opportunities for clients and providers to discern best applications. Parent satisfaction with services supports partnership within therapy processes, potentially augmenting outcomes. We examined parent satisfaction levels and experiences with the telehealth approach of a parent coaching intervention for families of children with special health care needs (CSHCNs). We used a mixed-methods descriptive design. Fifteen parents completed the Telehealth Usability Questionnaire (TUQ) and a semistructured interview. We analyzed TUQ ratings using descriptive statistics, and we thematically analyzed participants' telehealth experiences. Parents found telehealth useful, easy to use, effective, reliable, and satisfactory. Parents described that telehealth addressed needs conveniently, enhanced parent-provider communication, and fostered shared parent involvement. Telehealth appears to be a satisfactory occupational therapy service delivery approach for parents of CSHCN. Findings build preliminary evidence for understanding for whom telehealth is well suited, supporting determination of relevant, fundable telehealth services.

Development of Discharge Planning Instruments Based on Patient Family-Centered Care in the COVID-19 Inpatient Room, Universitas Airlangga Hospital, Surabaya

Introduction: The current era of the COVID-19 pandemic requires innovation in the provision of discharge planning by involving family members through the media safely and effectively. This study aimed to develop a discharge planning instrument based on patient family-centered care. Method: Research design Research and Development. The sampling technique used purposive sampling with a total sample of 110 medical record documents, 23 focus group discussion participants, and 2 experts (expert consultation). Data were collected through observation sheets, focus group discussions, and expert consultations. Data analysis using descriptive analysis, and validity test using I-CVI. Results: Development of a patient family centered care-based discharge planning instrument at the beginning of the patient's admission (admission), namely sorting and adding assessment items to the level of knowledge of the disease, information and education needs, values, and beliefs, cultural background as well as physical and psychological. During treatment, namely arranging and sorting discharge planning items, providing information and education according to the assessment results using a media approach and the method according to the COVID-19 pandemic protocol. Towards home that is adding items;readiness or environmental conditions (environment), referral plans (Outpatient referral), and continued treatment while at home (Medication). Conclusion: The developed instrument tested is valid. As a result of this development, the new instrument can be tested and applied, and researched in the next stage on the outcomes of patient family-centered care. © 2023 Authors. All rights reserved.

Assessment Fidelity of Parents Implementing a Standardized Telehealth Infant Autism Screener.

Telehealth is effective for service delivery in pediatric occupational therapy across ages and diagnoses. Remote parent coaching provides unique benefits for both parents and infants. As a result of COVID-19, practitioners and researchers pivoted to remote assessment and intervention without much preparation or training. It is critical that we evaluate the quality of these telehealth services. One important component of remote evaluations is assessment fidelity. To examine assessment fidelity of a telehealth-delivered observational autism screening tool for infants. An assessment fidelity checklist was applied as the primary outcome measure. Parents conducted assessments with 82% adherence to the fidelity checklist. Implications: A parent coaching telehealth approach may be valid for assessment in pediatric telehealth. Continually monitoring the assessment fidelity of a tool is critical for the valid administration of remote services.

The effect of an ICU liaison nurse-led family-centred transition intervention program in an adult ICU.

BACKGROUND: ICUs follow a restrictive companionship policy, especially after the COVID-19 outbreak. This strategy often limits the time families spend with patients, hinders their knowledge and skills in caregiving, and the sudden transfer of ICU patients to assist with disease monitoring and daily care can be very stressful for families. It is beneficial to use the transition period of transferring ICU patients to help families adjust to the role of caregiver. AIMS AND OBJECTIVES: To develop and implement a patient- and family-centered transitional care intervention plan for patients transferred to the ICU. DESIGN: Prospective, pretest and posttest design. METHODS: The experimental group received an individualized family-centered transition plan led by the ICU liaison nurse that included 1) communication with health care professionals; distribution of a transfer booklet; 2) identification of nursing issues and communication with the ward nurse; invitation of family members to participate in the patient's rehabilitation; 3) follow-up instruction on bedside range of motion exercises; and provision of a patient rehabilitation diary. Patients in the control group received only routine care. Data were collected using the General Information Questionnaire, Family Satisfaction with ICU Patients (FS-ICU), the Family Relocation Stress Scale (FRSS), and the Stanford Acute Stress Response Questionnaire (SASRQR). RESULTS: After the intervention, the total family satisfaction score of ICU patients in the experimental group was significantly higher than that of the control group (87.18 ± 8.38 vs 78.74 ± 10.63, p<0.001), and the satisfaction with the care and information provided was significantly higher in the experimental group compared to the control group (p < 0.001), with no significant difference between the two groups in terms of satisfaction with decision making (p>0.001). The level of relocation stress of patients' families was significantly lower in the experimental group compared to the control group after the intervention (p < 0.001). And there was no statistically significant difference between the two groups in terms of patients' acute stress disorder scores (p>0.001). CONCLUSION: The implementation of a family-involved transition care programme significantly improved the satisfaction of ICU patients' families and reduced the stress of relocation for patients' families. RELEVANCE TO CLINICAL PRACTICE: Focusing on the transition of ICU patients to ensure continuity of critical care and improve the quality of care for ICU patient transfers can be accomplished through a family-centered transition care plan led by the ICU liaison nurse.

Virtual Care Across the Neonatal Intensive Care Continuum.

The ongoing coronavirus disease 2019 (COVID-19) pandemic has highlighted the need for establishing effective parent and family engagement throughout all aspects of medicine. Though there has been some discussion in the literature regarding the transition from typical outpatient visits to telehealth visits, there has been less written about the inpatient approach to family inclusion. Here, we seek to describe our institution's experience with implementing virtual medicine across the full continuum of the neonatal intensive care unit (NICU) experience, including inpatient rounding, child life family visits, and outpatient high-risk developmental follow-up after discharge.

"I don't know how we would have coped without it." Understanding the Importance of a Virtual Hospital Visiting Program During the COVID-19 Pandemic.

As the COVID-19 pandemic reached Canada in full strength, the concept of allowing visiting to patients became an impossibility in most healthcare organizations. In March 2020, hospitals across Canada made the decision to close to visitors. This was a complicated decision which left admitted patients with very little option for connecting with family and friends other than through the telephone. In response, North York General Hospital launched a virtual family visiting (VFV) program across all inpatient units. Here we report the findings of a qualitative study of the program informed by an interpretive descriptive approach. Interviews were conducted with families who participated in the VFV program at North York General Hospital in Toronto, Canada during the first wave of the COVID pandemic. A total of 24 family members were interviewed. As anticipated, the family members were all extremely pleased with the opportunity to connect virtually and very satisfied with the VFV program. What was less anticipated was the anxiety and distress that families experienced in being separated from their loved ones. Our data analysis revealed 4 key themes which we have labeled (a) the unforeseen consequences of separation trauma, (b) increased vulnerability of patients and family, (c) a lifeline of human connection, and (d) the role of the facilitator as a connector. This work contributes significantly to a system-level understanding of the impact of imposed separation, increased vulnerability, and the importance of providing an alternative way for families to be present with their loved ones in these unprecedented times.

Evolution of Visiting the Intensive Care Unit.

This article gives a historical perspective of visitation in the intensive care unit (ICU) since the establishment of critical care units. Initially, visitors were not allowed because it was thought to be harmful to the patient. Despite the evidence, ICUs with open visitation have consistently been in the minority and the COVID-19 pandemic halted progress in this area. Virtual visitation was introduced during the pandemic to maintain family presence, but limited evidence suggests that this is not equivalent to in-person visitation. Going forward ICUs and health systems must consider family presence policies that allow for visitation under any circumstance.

Evolution of a System to Monitor Infant Neuromotor Development in the Home: Lessons from COVID-19.

In the nine months leading up to COVID-19, our biomedical engineering research group was in the very early stages of development and in-home testing of HUGS, the Hand Use and Grasp Sensor (HUGS) system. HUGS was conceived as a tool to allay parents' anxiety by empowering them to monitor their infants' neuromotor development at home. System focus was on the evolving patterns of hand grasp and general upper extremity movement, over time, in the naturalistic environment of the home, through analysis of data captured from force-sensor-embedded toys and 3D video as the baby played. By the end of March, 2020, as the COVID-19 pandemic accelerated and global lockdown ensued, home visits were no longer possible and HUGS system testing ground to an abrupt halt. In the spring of 2021, still under lockdown, we were able to resume recruitment and in-home testing with HUGS-2, a system whose key requirement was that it be contactless. Participating families managed the set up and use of HUGS-2, supported by a detailed library of video materials and virtual interaction with the HUGS team for training and troubleshooting over Zoom. Like the positive/negative poles of experience reported by new parents under the isolation mandated to combat the pandemic, HUGS research was both impeded and accelerated by having to rely solely on distance interactions to support parents, troubleshoot equipment, and securely transmit data. The objective of this current report is to chronicle the evolution of HUGS. We describe a system whose design and development straddle the pre- and post-pandemic worlds of family-centered health technology design. We identify and classify the clinical approaches to infant screening that predominated in the pre-COVID-19 milieu and describe how these procedural frameworks relate to the family-centered conceptualization of HUGS. We describe how working exclusively through the proxy of parents revealed the family's priorities and goals for child interaction and surfaced HUGS design shortcomings that were not evident in researcher-managed, in-home testing prior to the pandemic.

Family member perspectives on intensive care unit in-person visiting restrictions during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Family member presence in the intensive care unit is important for patient well-being and recovery. Limitations to visits increase the risk of psychological distress in family members. During the COVID-19 pandemic, in-person visiting restrictions were introduced to prevent the spread of infection. PURPOSE: To explore the experience of in-person visiting restrictions imposed during the pandemic on family members of patients with COVID-19 admitted to an intensive care unit. METHOD: Qualitative method with thematic analysis. Individual semi-structured telephone interviews were conducted. FINDINGS: We interviewed 21 family members. The results are presented in one overall theme with two main themes and five sub-themes. The theme 'Striving for closeness even at a distance describes the experience of being kept at a physical distance when participants needed closeness the most. Even participants who were allowed in-person visits perceived a 'distance' due to personal protective equipment or because they could only view the patient from a window. Participants reported that contact with and information about the patient was of utmost importance. Visits were viewed as essential in providing for the patient's wellbeing. Meaningful contact with the ICU team was vital for getting useful information. Phone calls became a lifeline, with digital aids such as video calls used occasionally to overcome the feeling of distance. CONCLUSION: Visiting restrictions imposed during the COVID-19 pandemic made straightforward and comprehensible communication of information from the ICU team more essential to reduce family members' perceptions of distance and exclusion from the intensive care unit.

Establishing a Breastfeeding Consortium for Clinicians in Pediatric Outpatient Care

Creating a supportive environment for breastfeeding mothers in the primary care setting has been shown to improve breastfeeding rates and duration. An important aspect of establishing a breastfeeding-friendly practice is to engage and educate health care providers. To increase consistency of breastfeeding care and interventions across a large primary care network, we established an Ambulatory Breastfeeding Consortium (ABC) focused on information sharing and discussion centered on care of breastfeeding and lactating families. The COVID-19 pandemic further highlighted the need to share up-to-date education and guidance, and the importance of the role of primary care providers in breastfeeding support. The ABC has been effective in engaging primary care nurses and other clinicians and disseminating information while encouraging discussion on the importance of providing informed care to breastfeeding families. Although more breastfeeding-specific education is recommended for clinicians, the ABC serves as a model for primary care clinicians to improve their knowledge and provide support for families through education, shared experience, and awareness across many pediatric primary care network sites. Development of a breastfeeding consortium for ambulatory care clinics in the Children's Hospital of Philadephia primary care network including 31 sites across Pennsylvania and New Jersey is presented. Virtual monthly meetings and education facililtated clinicians knowledge on various breastfeeding topics. The consortium has been especially helpful during the COVID-19 pandemic as birthing hospitals discharge new mothers ealier than usual and often without full assessment of the breastfeeding couplet. Ongoing updates of information from the government and professional organizations were able to be shared with members of the interdisciplinary team.

Out of sight, but not out of mind: Keeping connections alive during COVID-19

The Veteran Affairs Pittsburgh Healthcare System (VAPHS) completed over 750,000 outpatient appointments during fiscal year 2019. With changes occurring around COVID-19, VAPHS saw a significant decline in veterans on campus. VAPHS employees are strongly connected to the mission of serving our nation's hero's, while veterans find trust, support and comradery at the VA. The VAPHS Office of Veterans Experience (OVE) realized the impact that COVID-19 isolation may have on veterans quarantined at home and seized the opportunity to continue to build relationships, develop trust and keep connected through the VAPHS Birthday Club. Over 1,300 calls have been placed to provide a non-clinical wellness check-in and provide a warm birthday wish. The gesture of 'calling because we care and we're thinking of you' has provided employees and veterans a way to connect on a human level during a scary and unpredictable time. Hearing the stories of the men and women who borne the battle for our freedoms only reinvigorates our commitment to serving. While some calls last only a few minutes, there are veterans who have requested a follow-up call and now have a standing weekly conversation with a team member. These check-in calls have provided proactive assistance to our veterans by initiating communication between the veteran and healthcare provider, assisting with medication refills or updating demographic information in the chart. While these are all positive outcomes of the program, the most rewarding are the personalized relationships being built with veterans and the happiness and engagement of our employees. © The Author(s), 2020.

Parent and interdisciplinary professional perceptions of family-centered care in Thai NICU: A qualitative study.

BACKGROUND: Family-centered care (FCC) has been successfully incorporated into daily practice in many neonatal intensive care units (NICUs) worldwide. However, the implementation of FCC in lower-resourced settings, such as Thailand, can be challenging and needs to be further explored. AIMS AND OBJECTIVES: To identify parents' and interdisciplinary professionals' perceptions of FCC and to describe the opportunities to improve FCC in a Thai NICU. DESIGN: An exploratory qualitative approach was used. METHODS: The data were collected through face-to-face, semi-structured, individual interviews based on an interview guide. This study was conducted before the outbreak of coronavirus disease 2019 (February 2020) in a hospital in southern Thailand. Inductive thematic analysis was used to analyse interview data. RESULTS: Participants were parents (n = 9) and interdisciplinary professionals (n = 8). The results revealed four key themes: (a) Recognizing and responding to individual families' different readiness and their rights and values, (b) working in a parent-interdisciplinary partnership to provide care, (c) lacking resources and motivation and (d) understanding of care requirements and providing help/sympathy. CONCLUSIONS: The interdisciplinary professionals accepted that FCC is necessary for clinical practice, but there are some challenges in the Thai NICUs context because of the system of health care delivery. The findings highlighted that interdisciplinary professionals often viewed parents' involvement as an obstacle to providing neonatal care. RELEVANCE TO CLINICAL PRACTICE: Further research is recommended to investigate how FCC is operationalized by interdisciplinary professionals and how hospital administrators can be supported to implement the FCC approach into clinical practice in Thai NICUs.

Transitioning to telehealth during the coronavirus disease 2019 pandemic: Perspectives from partners of women with cystic fibrosis and healthcare providers.

OBJECTIVES: Cystic fibrosis is a chronic, genetic disease that primarily affects the respiratory system. The coronavirus disease 2019 pandemic has altered how people with cystic fibrosis receive healthcare. This paper explores the perceptions of cystic fibrosis healthcare providers and partners of women with cystic fibrosis regarding the use of telehealth in routine cystic fibrosis healthcare in the US. METHODS: As part of a larger study examining fertility counseling for women with cystic fibrosis, we conducted qualitative, semi-structured interviews. Participants included partners of women with cystic fibrosis (n = 20) and cystic fibrosis healthcare providers (n = 20). We completed the interviews before and during the global coronavirus disease 2019 pandemic. We analyzed the data using thematic analysis. RESULTS: When in-person healthcare could not be achieved safely, partners and healthcare providers found new value in telehealth. Three themes emerged: (1) increased connection between healthcare team and family, (2) increased efficiency of healthcare appointments, and (3) improved interdisciplinary collaboration. Partners found that telehealth allowed for more engagement in their significant others' healthcare. Providers reported enhanced efficiency and opportunities for collaboration across specialties that improved healthcare delivery and care coordination. DISCUSSION: Results from this study highlighted the positive value of telehealth. Telehealth presents as a potential alternative to delivering outpatient care for people with chronic illnesses beyond the pandemic.

Supporting Children and Families in Medical Settings: Insights from Child Life Specialists During the COVID-19 Pandemic.

Medical settings can be frightening and stressful places for pediatric patients and their families. During the COVID-19 pandemic fear and anxiety associated with receiving medical care increased as medical facilities dramatically altered the way they functioned in attempts to stop the spread of the virus. Certified Child Life Specialists (CCLSs) are medical professionals who provide psychosocial support for pediatric patients and their families by helping them understand and cope with medical procedures and the medical environment. In this role, CCLSs are likely to have important insights into the experiences and needs of pediatric patients and their families during COVID-19. Using a mixed-methods design, 101 CCLSs completed an online survey and 15 participated in follow-up interviews examining their experiences with and observations of children and families in medical environments during the pandemic. Participants emphasized a need to maintain a focus on child- and family-centered care for the well-being of patients and their families. While recognizing the need to socially distance to limit the spread of COVID, participants expressed concern about restrictive policies that did not balance the physical and mental health needs of patients and families. Participants also discussed the important role of child life services during the pandemic and the unique and multifaceted contributions CCLSs made to support patients, families, other medical professionals, and communities. Recommendations for supporting children and families in medical environments moving forward are discussed in light of lessons learned during the pandemic.

"Loved ones are not 'visitors' in a patient's life"-The importance of including loved ones in the patient's hospital stay: An international Twitter study of #HospitalsTalkToLovedOnes in times of COVID-19.

Background: Hospitals are institutions whose primary task is to treat patients. Family-centered care, which considers loved ones as equal partners in patient care, has been gaining recognition in the adult care setting. Our aim was to record experiences of and opinions on communication between hospital-based healthcare providers and patients' loved ones, related but not limited to the rigorous mitigation measures implemented during the COVID-19 pandemic. Methods: The Twitter profile @HospitalsTalkTo and hashtag #HospitalsTalkToLovedOnes were created to interact with the Twitter public between 7 June 2021 and 7 February 2022. Conversations surrounding #HospitalsTalkToLovedOnes were extracted and subjected to natural language processing analysis using term frequency and Markov chain analysis. Qualitative thematic analysis was performed on the 10% most interacted tweets and of tweets mentioning "COVID" from a personal experience-based subset. Results: We collected 4412 unique tweets made or interacted by 7040 Twitter users from 142 different countries. The most frequent words were patient, hospital, care, family, loved and communication. Thematic analysis revealed the importance of communication between patients, patients' loved ones and hospitals; showed that patients and their loved ones need support during a patient's hospital journey; and that pediatric care should be the gold standard for adult care. Visitation restrictions due to COVID-19 are just one barrier to communication, others are a lack of phone signal, no space or time for asking questions, and a complex medical system. We formulate 3 recommendations to improve the inclusion of loved ones into the patient's hospital stay. Conclusions: "Loved ones are not 'visitors' in a patient's life". Irrespective of COVID-19, patient's loved ones need to be included during the patient's hospital journey. Transparent communication and patient empowerment increase patient safety and improve the hospital experience for both the patients and their loved ones. Our findings underline the need for the concept of family-centered care to finally be implemented in adult nursing clinical practice.