Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic.

BACKGROUND: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. METHODS: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. RESULTS: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. CONCLUSION: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.

Examining the Impacts of the COVID-19 Pandemic on Service Providers Working with Children and Youth with Neuro-developmental Disabilities and their Families: Results of a Focus Group Study.

The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service providers offering support to children/youth with NDD and their families. Results highlight substantial service changes and challenges, as observed by service providers. Service closures and program delivery modification resulted in the rapid adoption of virtual services and reduced program delivery. Service providers have faced heightened workloads, personal weariness and 'burn out', and new levels of conflict at work, yet with little opportunity and support for self-care. Beyond challenges, new learning and growth have emerged, with heightened collaboration amongst organizations. Strains in service delivery during the pandemic have exposed programming and systems gaps, for which proactive capacity building is warranted and recommended.

The experiences of children with a cardiac transplant, their families and health care providers in the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has had deleterious impacts on pediatric patients and families, as well as the healthcare providers who have attended to their care needs. METHODS: In this qualitative study, children with a cardiac transplant, as well as their families and healthcare providers were interviewed to explore the impact of the COVID-19 pandemic on pediatric care, as well as on patients' and their families' daily lives. Participants were recruited from a children's hospital in western Canada. Fifteen caregiving parents of transplanted children, 2 young patients, and 8 healthcare providers participated in interviews. RESULTS: Findings highlighted how families and their healthcare providers experienced pandemic-related shifts. Themes highlighted experiences, which entailed (1) initially hearing about the COVID-19 pandemic; (2) learning about their new reality; (3) adjusting to the pandemic; (4) adjusting to shifts in pediatric services; (5) evolving a view on the future, and (6) offering recommendations for cardiac care in a pandemic. CONCLUSIONS: Study implications emphasize the need to critically reflect on, and advance, methods of helping young patients and their families in pandemic circumstances, and supporting healthcare providers.

Mental health impacts of the COVID-19 pandemic on children with underlying health and disability issues, and their families and health care providers.

Objectives: The COVID-19 pandemic has impacted mental health at a population level. Families of children with health vulnerabilities have been disproportionately affected by pandemic-related policies and service disruptions as they substantially rely on the health and social care system. We elicited the impact of the COVID-19 pandemic on children with health and disability-related vulnerabilities, their families, and their health care providers (HCPs). Methods: Children with diverse health vulnerabilities (cardiac transplantation, respiratory conditions, sickle cell disease, autism spectrum disorder, mental health issues, and nearing the end of life due to a range of underlying causes), as well as their parents and HCPs, participated in semi-structured interviews. Data were analyzed using qualitative content analysis in determining themes related to impact and recommendations for practice improvement. Results: A total of 262 participants (30 children, 76 parents, 156 HCPs) were interviewed. Children described loneliness and isolation; parents described feeling burnt out; and HCPs described strain and a sense of moral distress. Themes reflected mental health impacts on children, families, and HCPs, with insufficient resources to support mental health; organizational and policy influences that shaped service delivery; and recommendations to enhance service delivery. Conclusion: Children with health vulnerabilities, their families and HCPs incurred profound mental health impacts due to pandemic-imposed public health restrictions and care shifts. Recommendations include the development and application of targeted pandemic information and mental health supports. These findings amplify the need for capacity building, including proactive strategies and mitigative planning in the event of a future pandemic.

Examining professional competencies for emerging and novice social workers in health care.

This participatory project identified competencies of social workers in health care, with a focus on entry to the field. Findings reflected discussion groups with n = 24 social workers in health care settings. Identified core competencies were: (a) a core base of knowledge specific to social work in health care, (b) understanding of the health care system and implications for practice, (c) a strong work ethic and confidence working with limited supervision, (d) interpersonal skills for multi-disciplinary teamwork, (e) understanding about complex role and power dynamics, (f) accountability for one's own work/practice and commitment to professional development, (g) reflectiveness on practice, and (h) an organizational commitment to capacity building.

Examining the Transition from Child to Adult Care in Chronic Kidney Disease: An Open Exploratory Approach.

For youth with chronic kidney disease (CKD) and their families, shifting from pediatric to adult systems of renal care can be challenging. This study explored the transitional process experienced by youth with CKD and their families, including perceived facilitators and barriers to effective transition. Qualitative interviews were conducted with youth with CKD (n=28) and their parents (n=28). Ambiguity regarding healthcare provider roles within the adult system was frequently reported. Themes reflected parental challenge relinquishing care responsibility, synergistic and divergent expectations between youth and parents, tensions in youth self-care readiness, desired healthcare provider roles in transition preparedness, and system considerations in transition. A "learning stage" was recommended in which youth experienced the adult system while supported by known pediatric team members.

Parental spirituality in life-threatening pediatric cancer.

This study addressed parental spirituality in the context of pediatric cancer with a poor prognosis. Drawing upon previous research implementing a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents' daily lives. Spirituality included religious beliefs and practices, notions of a higher force or cosmos, relationship with a divine being, as well as elements emerging from meaning-making and relationships. Parental expectations of spirituality remained relatively constant across data collection time points (3-9 months postdiagnosis), although limited variation occurred relative to shifting circumstance (e.g., deterioration of the child's condition). Spirituality appeared to offer: greater acceptance of parents' inability to protect their child from harm related to her/his life-threatening illness, guidance and emotion decompression, and support from one's faith community. Recommendations for integrating spiritual assessment in clinical care practice are offered.

Examining transitions from youth to adult services for young persons with autism.

Autism Spectrum Disorder (ASD) presents pervasive challenges for individuals throughout their lifetime. Although some financial, community, and individual supports are available for children, there are fewer resources available for adults with ASD, their families, and/or caregivers. It is important to understand the multidimensional shifts associated with the transition from adolescence to adulthood for individuals with ASD. To better understand the transitional process, a qualitative study comprised 11 semi-structured interviews with individuals with ASD and their families. Interviews elicited the experiences of individuals and families impacted by ASD as they transition to adulthood and adult systems of care. This study found that individuals with ASD and their family are exposed to a "lifetime of difficult transitions" due to a limited number of service providers and resources including stringent and restrictive program and funding criteria. As a result, individuals with ASD and their families were concerned about the ability of some individuals with ASD to establish meaningful lives in adulthood. These findings challenge existing barriers and broader societal values and stigma that impede emerging adults with developmental disabilities.

Examining the Experiences of Fathers of Children with a Life-Limiting Illness.

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.

"Live It to Understand It": The Experiences of Mothers of Children With Autism Spectrum Disorder.

Mothers of children with an autism spectrum disorder (ASD) variably experience challenges in their caregiving role. This ethnographic study examined the caregiving experiences of mothers of a young person with ASD (aged ≤25 years). Semistructured interviews were conducted with 85 mothers across three Canadian regions. A follow-up subsample of 10 mothers took part in participant observation sessions in the home and/or other environments within the community. Analysis yielded themes that depicted the following: redefining child and family aspirations, forging a shifted identity, and the need to "live it" to understand mothering a young person with ASD. Supports and services were perceived to be required but often insufficient to meet the needs. Findings identify a range of challenges, lessons learned, and a reconfigured sense of mothering. An emerging model of mothering a child with ASD is presented. Implications for practice, policy, and research are offered.

The Experiences and Perceptions of Street-Involved Youth Regarding Emergency Department Services.

Street-involved (SI) youth comprise a substantial component of the urban homeless population. Despite being significant users of hospital emergency department (ED) services for acute and ongoing health needs, little is known about their experiences of ED care and the factors affecting their ED use. This study used a grounded theory and community-based approach to examine these issues. Focus groups and individual interviews were facilitated with 48 SI youth between ages 15 and 26 years, recruited in hospital or through community agencies serving SI youth in a major Western Canadian city. Results demonstrate that SI youth often perceived suboptimal care and experienced long waiting periods that led to many avoiding or prematurely exiting the ED. Service gaps appeared to have a negative bearing on their care and health outcomes. Findings invite a critical review of ED care processes, structures, and staff interactions in the aim of enhancing ED services to SI youth.

"We're not going to say it's suffering; we're going to say it's an experience": The lived experience of maternal caregivers in pediatric kidney transplantation.

Advances in the surgical and immunological aspects of pediatric kidney transplantation have resulted in significant improvements in long-term outcome and survival rates. However, there continues to be a negative impact reported on overall family functioning despite the reported good health and quality of life for the transplanted child. This research utilizes a phenomenological approach to examine the lived experiences of seven mothers of children who had undergone kidney transplantation. Findings of the study illuminate that the experience of mothering in the context of pediatric kidney transplantation is reflected in (1) the significance of relationships to the experience of self; (2) the lived experience of time; and (3) opportunities for growth and personal development. This research identifies that, while maternal caregiving in this context is fraught with challenges, there are opportunities for the development of skills and personal growth within the experience. By embracing a strength-based perspective, social work is well positioned to offer support for maternal meaning-making and adjustment during times of stress and uncertainty.

Evaluation of a family camp intervention for children with a heart transplant and their families.

Given the arduous course of heart transplantation and follow-up care, recipients and their families face complex challenges and stressors warranting supportive interventions. This study explored the impact of a family camp as an intervention of education and social support for pediatric transplant recipients and their families. A total of 49 individuals participated in this evaluation, including eight children and nine youth with heart transplants, five siblings, 19 parents, and 13 health care providers. Participants ranked and described the 3-day family camp experience. Analysis of pre/post intervention measures on knowledge, social support, and coping revealed statistically significant improvements in knowledge, social support, self-esteem, and psychological stability. Satisfaction surveys revealed the camp to be an important resource for education, family fun, and peer support among transplant recipients, their families, and the health care team. Implications and recommendations are offered for clinical and community practice.

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.

The experiences of emergency department use by street-involved youth: Perspectives of health care and community service providers.

Street-involved (SI) youth represent a significant proportion of urban homeless populations. While previous research has identified SI youth as substantial users of emergency department (ED) services and has examined their experiences of ED care, little is known about the experiences and perceptions of the service providers who assist these youth with health care related issues. Using grounded theory, individual interviews and focus groups were conducted with 20 community agency staff serving SI youth, 17 health service providers, two hospital administrators, and two hospital security personnel regarding their experiences in providing or facilitating ED care for SI youth. Results identify differences in expectations between SI youth and hospital staff, along with service issues and gaps, including relational barriers and resource constraints. Implications for practice and policy development are offered.

A struggle to survive: the experience of awaiting pediatric heart transplantation.

Despite the establishment of heart transplantation as a life-saving therapy for children and adolescents, little research has focused on the biopsychosocial impact of the transplant process. Few studies have captured the subjective experiences of young heart transplant recipients. This study examined the experiences and perspectives of children and adolescents during the pretransplant phase of waiting for a donor organ. Grounded theory methods guided data collection and analysis. A total of 27 adolescents participated in semistructured qualitative interviews. Findings illuminate the waiting period for pediatric heart transplantation to be a pervasive experience, with consequent impact on physical, psychological, and social well-being. Participants described various biopsychosocial processes and experiences that occurred during this time, with data analysis yielding themes reflecting notions of "struggling to survive," including physical limitations, lethargy, social isolation, discomfort with physical appearance, and academic issues. This research identifies the pretransplant experience as a period framed within a text of debilitation and negative self-perceptions related to health and well-being. Supporting children and their families as they navigate this complex and uncertain journey is merited, and results invite further interventional development and research.

Connection versus disconnection: examining culturally competent care in the neonatal intensive care unit.

Culturally competent health care is of critical importance; however, it is presented as a frequent challenge in health care settings. This study explored cross-cultural care from the health care provider perspective within two tertiary level Neonatal Intensive Care Units (NICUs). Fifty eight inter-professional health care providers (HCP) participated in focus groups. Participants identified perceived care-related experiences of newly immigrated parents whose infant received care in the NICU as well as health care provider perspectives on delivering that care. Results identified core processes of "connection" and "disconnection," which appeared to have a substantial bearing on NICU experience and interaction. Connection comprised congruity, synergy, and "fit," and resulted in an enhanced relationship between the family and HCP. Disconnection, in contrast, entailed a lack of "fit" and in some cases, misunderstanding and/or conflict between the family and a member or members of the health care team. Connection and disconnection occurred at various junctures of NICU care. These junctures reflected interaction between the family and HCP at the bedside and/or at the level of the unit, hospital, or community at large. Implications for practice, policy, and research are discussed.

Psychosocial and Service Delivery Impacts of the COVID-19 Pandemic on Children With Respiratory Conditions, Their Parents and Their Health Care Providers.

The COVID-19 pandemic imposed widespread impacts on the health and well-being of children with respiratory challenges and their families, as well as on the health care system that supports them. An exploratory qualitative study was undertaken to examine how the pandemic impacted families' and health care providers' daily lives and experiences of care. Four youth, 12 parents and 7 health care providers participated in interviews via telephone or online technology. Content analysis of transcribed interviews revealed participant experiences, including initial responses to the pandemic, adjustment to pandemic shifts, and anticipation of the future. While deleterious physical health impacts were minimal for children with pre-existing respiratory conditions, their mental health was negatively impacted by the pandemic and related health protocols. Families and health care providers experienced strain, yet demonstrated resilience. Pandemic-related shifts profoundly impacted daily life at home, school, and work. Pediatric pandemic planning in clinical care is recommended to better address the needs of children with respiratory conditions and their families as well as pediatric health care providers.

COVID-19 Pandemic Experiences of Families in Which a Child/Youth Has Autism and Their Service Providers: Perspectives and Lessons Learned.

PURPOSE: The impacts of the COVID-19 pandemic on autistic children/youth and their families and on service providers are not yet well-understood. This study explored the lived experiences of families with an autistic child and service providers who support them regarding the impacts of the pandemic on service delivery and well-being. METHODS: In this qualitative study, families and service providers (e.g., early intervention staff, service providers, school personnel) supporting autistic children/youth were interviewed. Participants were recruited from a diagnostic site and two service organizations that support autistic children/youth. RESULTS: Thirteen parents and 18 service providers participated in either an individual or group interview. Findings indicate challenges associated with pandemic restrictions and resulting service shifts. These challenges generally imposed negative experiences on the daily lives of autistic children/youth and their families, as well as on service providers. While many were adversely affected by service delivery changes, families and service agencies/providers pivoted and managed challenges. Shifts have had varied impacts, with implications to consider in pandemic planning and post-pandemic recovery. CONCLUSION: Results highlight the need for autism-focused supports, as well as technology and pandemic preparedness capacity building within health, therapeutic and educational sectors in order to better manage shifts in daily routines during emergencies such as a pandemic. Findings also offer instructive consideration in service delivery post-pandemic.