Child welfare work in Colorado; a study of public and private agencies and institutions and conditions of service, in the care of dependent, delinquent and defective children,

Mode of access: Internet.

The influence of spirituality, race/ethnicity and religion on parent grief and mental health at one and three months after their infant's/child's death in the neonatal or pediatric intensive care unit

The death of an infant/child is one of the most devastating experiences for parents and immediately throws them into crisis. Spiritual and religious coping strategies may help parents with their loss. The purposes of this longitudinal study were to: (1) describe differences in bereaved parents' use of spiritual coping strategies across racial/ethnic and religious groups, mother/father dyads, and time—one (T1) and three (T2) months after the infant's/child's death in the neonatal (NICU) or pediatric intensive care unit (PICU), and (2) test the relationship between spiritual coping strategies and grief, mental health, and personal growth for mothers and fathers at T1 and T2. A sample of 126 Hispanic, Black/African American, and White parents of 119 deceased children completed the Spiritual Coping Strategies scale, Beck Depression Inventory-II, Impact of Events-Revised, Hogan Grief Reaction Checklist, and a demographic form at T1 and T2. Controlling for race and religion, spiritual coping was a strong predictor of lower grief, better mental health, and greater personal growth for mothers at T1 and T2 and lower grief for fathers at T1. The findings of this study will guide bereaved parents to effective strategies to help them cope with their early grief.

Children with special health care needs: Comparison of the effects of home care setting, prescribed pediatric extended care setting, and long-term care setting on child and family health outcomes and health care service use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL™ Generic Core Module for child health and functioning, PedsQL™ Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Caring for the autistic child: a resource manual for health care providers

Background: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that affects approximately 1 in 68 children (CDC, 2014). Comorbid medical conditions and psychiatric disorders increase the likelihood that these children will require acute care services more often than their neurotypical peers (McDermott, Zhou, & Mann, 2008; Simonoff et al., 2008). The evidence suggests that most health care providers are unprepared for the complexity of the interactions with these children during an acute care episode (McGongile, Migyanka, et al., 2014; McGongile, Venkat, et al., 2014; Muskat et al., 2015). Currently, there are no formalized training programs for acute health care workers in Regina Qu’Appelle Health Region (RQHR). Purpose: The purpose of this practicum project was to use the best available evidence on the care needs of children with Autism Spectrum Disorder (ASD) and effective interaction strategies to guide development of a resource manual for acute care health workers, especially registered nurses (RNs), working in the RQHR. Methods: Initial steps involved planning for and conducting a needs assessment. The resulting database emerged from a critical review of relevant literature, an environmental scan of resources within RQHR, and informal consultations with parents and caregivers of children with ASD, acute care nurses and nurse managers and experts in the field of ASD. Following analysis and collation of all data into major themes, a draft blueprint guided development of a resource manual for health care providers interacting with and providing care to children with ASD. Results: The needs assessment data informed development of an educational resource manual appropriate for all health care providers who encounter children with ASD and their parents and/or caregivers within acute care environments. The Caring for the Autistic Child: A Guide for Health Care Providers in Acute Care provides insightful information on the disorder and associated comorbid conditions, as well as effective approaches to care delivery with this priority population. Implementation and evaluation plans will guide distribution of the resource manual within the RQHR. Conclusion: The sequential and interdependent steps taken in this practicum project led to the development of a resource manual comprised of simple, easy to implement strategies capable of assisting nurses and all healthcare providers in providing care tailored to the autistic child’s unique needs and challenges.

Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.

Why is it Important to Involve New Fathers in the Care of Their Child

Research into fathers’ unique contributions to the physical, emotional, social and cognitive wellbeing of their offspring has been ongoing for several decades. Health and family care policy has focused increasingly on the imperative to include fathers in services and to see them as a vital resource for mothers and children. The author identified papers from 2000 onwards that illuminate health visitors’ level of engagement with fathers of young families. The review covers policy relating to health and family services for fathers, the nature of fathering in the 21st century, the influence of involved fathers on their partners and babies, what fathers say they want from family services, and future directions for research into fathering.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).