Riding the wave: pandemic social work in hospitals.

The COVID-19 pandemic significantly impacted social work practice globally. Using a cross-sectional survey, we examined the experiences of hospital social workers (N = 230) in Ontario, Canada during the second wave of the pandemic. Nearly three quarters (73%) of respondents reported workload changes, and 82% had increased responsibilities due to patient care demands. Hospital social workers adapted and made an important contribution to health care during the pandemic by employing virtual resources, supporting interprofessional colleagues, focusing on advocacy, and providing mental health and trauma-focused care. They sought educational opportunities and contributed to the development of procedures. Recommendations to strengthen hospital pandemic social work practice are provided.

The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital.

This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.

The emergence of personal growth amongst healthcare professionals who care for dying children.

ABSTRACTObjective:Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness. METHOD: This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison. RESULTS: Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence. SIGNIFICANCE OF RESULTS: A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

Working with children with autism and their families: pediatric hospital social worker perceptions of family needs and the role of social work.

Social workers with knowledge of autism can be valuable contributors to client- and family-centered healthcare services. This study utilized a qualitative design to explore pediatric hospital social workers' experiences and perceptions when working with children and youth with autism and their families. Interviews with 14 social workers in a Canadian urban pediatric hospital highlighted perceptions of the needs of families of children with autism in the hospital and challenges and benefits related to the role of social work with these families. Results suggest that pediatric social workers may benefit from opportunities to develop autism-relevant knowledge and skills.

Complex families, the social determinants of health and psychosocial interventions: Deconstruction of a day in the life of hospital social workers.

The roles of hospital social workers are delineated in the literature; however, their daily interventions have only been described anecdotally. This study analyzes the daily work of social workers in a pediatric hospital through a survey completed which examined factors related to interventions utilized and time spent per case over a 1-day period. Length and types of interventions were associated with the social determinants of health, time since diagnosis, biopsychosocial issues, and perception of complexity. The study offers a snapshot of the personalized expertise, provided by social workers that addresses complex contextual and biopsychosocial concerns of patient and families.

The experiences of pediatric social workers providing end-of-life care.

Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with dying children. This study consisted of 9 semi-structured interviews of acute care pediatric social workers who work with dying children and their families. Themes included the role of social work with dying children, the impact of their work and coping strategies. Authors suggest a hospital-worker partnership in supporting staff and promotion of supportive resources.

Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder.

Care for children with autism spectrum disorder (ASD) in the emergency department (ED) is increasingly recognized as difficult. Communication, sensory and behavioral challenges in a high intensity environment pose risks for negative experiences and outcomes. Through semi-structured interviews, parents (n = 31) and their children (n = 4) with ASD shared their perspectives on ED care. Participants identified issues that negatively affected care experiences, including care processes, communication issues, insufficient staff knowledge about ASD, and inadequate partnership with parents. Elements contributing to an improved ED experience were also cited, including staff knowledge about ASD, child- and family-centered care, and clarity of communication. Findings inform an emerging model of ED care. Recommendations for capacity building and practice development are offered.

Thinking big, supporting families and enabling coping: the value of social work in patient and family centered health care.

Patient and family-centered care has become a focus in health services. Social work has a rich history of providing responsive patient care. This study identified the contribution and value of social work to PFCC from the key stakeholder perspectives of health social workers (n = 65). Utilizing interpretive description, four themes emerged: (1) Thinking big and holistically, (2) Intervening with families, (3) Enabling patient and family coping, and (4) Maximizing hospital and community resources. Barriers included a lack of power, professional isolation and role creep. Implications for research and practice are provided.

Poverty and pediatric palliative care: what can we do?

It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work.

From office tools to community supports: The need for infrastructure to address the social determinants of health in paediatric practice.

Previous research has highlighted the importance of addressing the social determinants of health to improve child health outcomes. However, significant barriers exist that limit the paediatrician's ability to properly address these issues. Barriers include a lack of clinical time, resources, training and education with regard to the social determinants of health; awareness of community resources; and case-management capacity. General practice recommendations to help the health care provider link patients to the community are insufficient. The objective of the current article was to present options for improving the link between the office and the community, using screening questions incorporating physician-based tools that link community resources. Simple interventions, such as routine referral to early-year centres and selected referral to public health home-visiting programs, may help to address populations with the greatest needs.

Des recherches antérieures ont fait ressortir l'importance de tenir compte des déterminants sociaux de la santé pour améliorer la santé des enfants. Cependant, des obstacles importants empêchent les pédiatres de bien se pencher sur la question, incluant le manque de temps clinique, de ressources, de formation et d'enseignement sur les déterminants de la santé, la connaissance des ressources communautaires et la capacité de gestion des cas. Les recommandations faites en pratique générale pour aider le dispensateur de soins à orienter les patients vers des ressources communautaires ne suffisent pas. Le présent article vise à présenter des moyens de faire de meilleurs liens entre le cabinet et la communauté, à l'aide de questions de dépistage intégrant des outils médicaux qui dirigent les patients vers des ressources communautaires. Des interventions simples, telles que l'orientation systématique vers des centres de la petite enfance et l'orientation sélective vers des programmes de visite à domicile par la santé publique, peuvent contribuer à servir les populations qui ont les besoins les plus criants.

Making the invisible visible: are health social workers addressing the social determinants of health?

This study explored the ways in which health social workers (HSW) address the social determinants of health (SDH) within their social work practice. Social workers (n = 54) employed at major hospitals across Toronto had many years of practice in health care (M = 11 years; SD = 10.32) and indicated that SDH were a top priority in their daily work; with 98% intentionally intervening with at least one and 91% attending to three or more. Health care services were most often addressed (92%), followed by housing (72%), disability (79%), income (72%), and employment security (70%). Few HSW were tackling racism, Aboriginal status, gender, or social exclusion in their daily practice.

Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists.

The hospital setting may be especially difficult for pediatric patients on the autism spectrum and their families compared to those not on the spectrum. Child life specialists are healthcare professionals specifically trained to support parents and their children and help prepare them for hospital procedures. Because of this specialized skill set, these professionals likely have a wealth of expertise to share relevant to caring for autistic patients. This study aimed to understand 21 child life specialists' experiences working with patients on the spectrum. Our findings highlighted the following themes: Parents are the Experts, Proactive and Individualized Care, Disclosure, and Hospital-Wide Suggestions to Improve Patient Care. We discuss the practice implications of these findings on the healthcare experiences of pediatric patients on the spectrum.

Patient- and Family-Centered Care in the Emergency Department for Children With Autism.

BACKGROUND: Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD. METHODS: Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components. RESULTS: Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care. CONCLUSIONS: Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.

Development of the Pediatric Social Risk Instrument Using a Structured Panel Approach.

BACKGROUND: Social determinants of health impact child illness. Currently, no instrument exists to identify social need during hospital admission. METHODS: Using the UCLA (University of California Los Angeles)-RAND appropriateness method, consensus was reached for an instrument to identify social need in hospitalized children. A panel of 11 experts reviewed candidate indicators through 3 rounds to reach consensus. The instrument then underwent usability testing. RESULTS: Three hundred and forty-seven indicators from the literature were sorted into 18 social risk themes. After 3 rounds, consensus was reached on 82 indicators. Six additional social risk themes were recommended by the panel, resulting in consensus for 18 additional indicators. Final refinement resulted in an instrument containing 86 indicators representing 11 social risk themes. Usability testing identified that the tool was well received by families. Final feedback was incorporated into a post-usability instrument. CONCLUSIONS: Using the UCLA-RAND appropriateness method, a new pediatric social risk instrument was created to identify social need for hospitalized children.

Evaluation of employment-support services for adults with autism spectrum disorder.

The employment rate among persons with autism spectrum disorder has been noted as unacceptably low. Employment-support services are increasingly linked to the potential for favorable job outcomes, yet little is known about employment-support practices and the outcome of these interventions. This mixed-methods study examined employment-support resources for persons with autism spectrum disorder. An online survey was completed by 137 senior clinicians or administrators in employment-support programs in Canada. Additionally, 122 follow-up interviews were conducted with individuals with autism spectrum disorder (n = 71) and their parents/caregivers (n = 51). Findings indicate that the quality and beneficial impact of employment-support services for adults with autism spectrum disorder may be more favorably perceived by employment-support personnel than by individuals with autism spectrum disorder and their families. Furthermore, employment-support personnel were more disparaging about autism spectrum disorder vocational support capacity within their community, compared to their own programs. Individuals with autism spectrum disorder and their families seek services that support both accessing and retaining employment. Capacity-building in employment support for youth and adults with autism spectrum disorder is recommended, based on a reported insufficiency of, and a lack of evidence guiding, existing services. Program recommendations and an emerging model for integrated vocational support in autism spectrum disorder are offered.

The Experiences of Parents of Pediatric Patients With Acute Lymphoblastic Leukemia, 2 Months After Completion of Treatment.

Diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) can be a highly stressful time for the entire family. While completion of treatment may bring relief to some families, it may also bring about additional anxieties and fear. The primary objective of this article is to present an analysis of the experiences, emotional states, and support needs of parents of pediatric cancer patients 2 months after treatment completion for ALL. Using a qualitative interpretive description approach, transcripts from interviews with 17 parents from the leukemia/lymphoma program of a large urban pediatric cancer center were analyzed using N-Vivo 10 data analysis software. Parents reported simultaneous feelings of relief and apprehension, changing relationships with their health care team and the experience of returning to a life following treatment. Results highlight the need for support for parents on completion of treatment.

Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments.

Children and youth with autism spectrum disorder presenting in emergency departments face potential cognitive, sensory, and behavioral challenges, and it is crucial for providers to be aware of their unique needs. However, disclosure of a child's autism spectrum disorder can be complex for parental caregivers and is not well understood. This qualitative study utilized a grounded theory approach and analyzed data from 28 parents and 16 health care providers related to autism spectrum disorder disclosure within two Canadian pediatric emergency departments. Study results indicated that participants identified benefits and risks of disclosure. Encouraging understanding, expediting service, and preparing health care providers for working with children with autism spectrum disorder were identified as benefits of disclosure. Risks related to disclosure included potential negative attributions toward the children and parental discomfort in disclosing a diagnosis in front of the children. Parents discussed the health care encounters they experienced following disclosure and provided recommendations for improving the disclosure process in the emergency department. It is recommended that future research explore the experiences of parents who choose not to disclose their child's autism spectrum disorder. Greater awareness of the disclosure experience and the development of resources and tools to support communication between parents and health care providers are also recommended.

Toward Practice Advancement in Emergency Care for Children With Autism Spectrum Disorder.

BACKGROUND AND OBJECTIVE: There is increasing recognition that children with autism spectrum disorder (ASD) experience challenges in busy clinical environments such as the emergency department (ED). ASD may heighten adverse responses to sensory input or transitions, which can impose greater difficulty for a child to cope with situational demands. These problems can be amplified in the ED because of its busy and unpredictable nature, wait times, and bodily care. There is little literature documenting ED-based needs of children with ASD to inform clinical guidelines. The objective was to identify stakeholder perspectives in determining clinical priorities and recommendations to guide ED service delivery for children with ASD. METHODS: After qualitative interviews with children, parents, and health care providers conducted in a previous phase of this study, focus groups were convened with parents of children with ASD, ED clinicians, and ED administrators (total n = 60). Qualitative data were analyzed based on an interpretive description approach. RESULTS: Participants identified the ED and its delivery of care as insufficient to meet the unique needs of children with ASD. The following clinical priorities were identified: ASD-focused preparedness for ED procedures and processes, wait time management, proactive strategies for sedation and restraint, child-focused support, health care provider capacity building, post-ED follow-up resources, and transition planning to adult care. Heightened child- and family-centered care were strongly recommended.

Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder.

This study aimed to characterize the perspectives of health professionals who care for children with autism spectrum disorder (ASD) in the emergency department (ED) and to determine what strategies could optimize care. Ten physicians and twelve nurses were interviewed individually. Questions related to experiences, processes, clinical decision-making and outcomes of children with ASD recently seen in the ED. Interviews were audio recorded, transcribed, and analyzed using a qualitative framework. Participants identified factors that facilitated effective care, including communication strategies, parental involvement and teamwork. Barriers identified included child characteristics, the ED environment, and competing demands. Recommendations included additional staff training and stakeholder engagement. However, making accommodations was often described as being at odds with how the ED functioned, with implications for future service planning.

Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals.

Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.