Care For Families Of Children Research Articles

Assessing the need for home-based end-of-life palliative care in pediatric cancer care

Background: Palliative care is underrepresented in our community at large. End-of-life care is offered mainly in palliative care hospices or hospitals worldwide. As access to such a facility is often sparse, and since many of them are located far away from home, most families wish to go home if a curative treatment option does not exist. Aims and Objectives: The study was done to analyze the preferences for the location of end-of-life care for families of children with cancer. We analyze the reasons for the same and offer suggestions for improving this situation. Materials and Methods: Parents of 77 children who died following a diagnosis of childhood cancer between 2019 and 2023, either due to progressive or refractory disease or due to toxic death, were interviewed to understand their choice of location for end-of-life care. The interview was done telephonically or face to face. Results: 41 out of 77 deaths were anticipated, and out of these, we observed that only 3 (7.3%) opted for a formal palliative care center. Fifteen families (36%) opted for end-of-life treatment in the hospital, and 23 families (56%) went home despite having no support at home for palliation. The decision is taken considering the practical needs of the rest of the family, although it is more difficult to implement. The reasons behind the decision are analyzed here. Conclusion: We recommend that integrated home-based palliation for end-of-life care in children be developed instead of hospice support. Hospices that take care of adults may be used with children where required. A multidisciplinary team that can support the needs of families and can visit them at home needs to be developed around centers managing children with cancer.

99 Feasibility of a Co-designed Community Intervention for Families of Children with Developmental Diagnoses

Abstract Background The COVID-19 pandemic has created considerable difficulties and barriers to accessing care for families of children with developmental disability (FCDD), particularly for families who are socially or economically marginalized. We have previously found that families have reported increased caregiver stress, difficulty navigating services and worsened social isolation. Building on these findings, a community-based intervention was co-created with community partners and families to improve social support, caregiver empowerment and access to services (see Figure 1, below), consisting of a ‘toolkit’ of resources with an accompanying workshop for caregivers and community service providers (CSPs), and a chat group community of support for caregivers. Objectives This study explored the feasibility of the co-designed intervention, examining the acceptability, implementation, and demand. Design/Methods This was a mixed-methods feasibility study, which incorporated quantitative and qualitative evaluation components, and received Research Ethics Board approval (SMH 20-127). Demand and implementation were assessed by measuring participant attendance in the workshops. Acceptability was assessed using post-workshop questionnaires to measure satisfaction and knowledge uptake, and further explored in semi-structured interviews, which were recorded, transcribed and analyzed using thematic analysis. Any caregiver, and CSPs who participated in any arm of the intervention, were invited to participate. Results Workshops were held 6 times (4 caregiver workshops, 2 staff workshops) in two community partner sites. A total of 55 participants (32 caregivers, 23 staff) participated. After receiving the toolkit and attending the workshop, both caregivers and CSPs reported that they felt more comfortable with navigating services, which was higher in CSPs (4.58/5, p<0.005). 100% of participants wanted additional iterations of the workshops with the toolkit. In the IDIs, both CSPs and caregivers reported that the toolkit was comprehensive and easy-to-use. Many caregivers reported using the toolkit immediately after the workshops to connect to new services. Among both CSPs and caregivers, it was found that the group chat was not commonly used but had the potential to be a helpful tool to share additional resources and discuss specific topics. Conclusion This community-based, co-created intervention was implemented successfully, with high acceptability and demand. Both CSPs and caregivers found the toolkit to be useful and have used it to successfully access services, while the group chat was less used. Our study demonstrates the critical importance of working alongside community to co-create interventions to best serve specific community needs.

"A very different place from when the pandemic started": Lessons learned for improving systems of care for families of children with medical complexity.

Coronavirus disease 2019 (COVID-19) created unprecedented challenges for everyone, but especially families of children with medical complexity (MC) who rely on a comprehensive range of health and social services in their daily lives. Yet despite this, there are limited studies exploring caregiver perspectives regarding access to health and social services during the pandemic. To address this gap, we aimed to explore how health and social services can better meet the needs of children with MC and their families. Sixteen parents residing with their children with MC (from birth to 18years) in British Columbia, Canada participated in semi-structured interviews between July 2021 and April 2022. Findings revealed two different areas to improve services for families of children with MC, those relating to technology and family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with other families and their community. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family. Findings have important implications for improving services to enhance the well-being and quality of life of children with MC and their families.

Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration.

Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps. Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.

Family care of children with chronic conditions in the context of the pandemic by COVID-19

Objective: to describe how families experienced the care of children in chronic condition during the pandemic by COVID-19. Methods: qualitative study, guided by the Family Management Style Model, conducted with 24 families of children in chronic condition. The data, collected by telephone contact through semi-structured interviews, were submitted to thematic analysis. Results: data analysis resulted in three thematic categories: Changes in the routine of family members; Emotions triggered in family members and children due to the pandemic; and Implications of the pandemic by COVID-19 for the continuity of care. They highlighted: incorporation of hygiene care, social distancing concomitant to domestic and professional activities at home; and feelings of fear and concern about the children's health and development and the need for caregivers to provide rehabilitation and support for school activities. Conclusion: it was observed that the pandemic changed the family routine, produced negative feelings in families, modified care demands and compromised access to services. Contributions to practice: these results contribute to the identification of the repercussions of COVID-19 on families and children with chronic conditions and can help establish strategies to reduce the consequences of this pandemic and other future health emergencies.

Family carer and professional perceptions of the potential use of telehealth for behavioural support.

Telehealth (i.e. the use of technology across distance) is widespread in many fields. Although its use for behavioural support for people with intellectual or developmental disabilities (IDD) is emerging, there are no known studies examining stakeholder perceptions of this. A four-round Delphi consultation was conducted with 11 professionals and six family carers of children with IDD to generate consensus on what would influence participants' use of telehealth for behavioural support. Data were collected prior to the coronavirus pandemic. Thirty-six items reached consensus for professionals (26 advantages and 10 disadvantages/barriers) and 22 for family carers (8 advantages and 14 disadvantages/barriers). A range of solutions were also identified for the disadvantages/barriers. Participants were willing to use telehealth for behavioural support. However, disadvantages/barriers need to be addressed, and guidelines relating to the use of telehealth in this field are needed. We report a number of practice recommendations including combining telehealth with in-person supports where possible, incorporating video technologies, and considering client perspectives and confidence with telehealth methodologies.

Direct and indirect costs for families of children with autism spectrum disorder in China.

This is the first comprehensive national study to explore the direct and indirect costs for families of children with autism spectrum disorder in China. The increasing prevalence of autism spectrum disorder highlights a growing need for resources to provide care for families of children with autism spectrum disorder. The medical and nonmedical costs and parents' productivity loss have caused a serious burden on their families. Our objective is to estimate the direct and indirect costs for the families of children with autism spectrum disorder in China. The target population was parents of children with autism spectrum disorder. We analyzed the costs using cross-sectional data from a Chinese national family survey with children aged 2-6 years (N = 3236) who were clinically diagnosed with autism spectrum disorder. Family data from 30 provinces in China were obtained. Cost items included direct medical costs, direct nonmedical costs, and indirect costs. In this study, we found that the largest part of family costs for autism spectrum disorder are nonmedical costs and productivity loss. Autism spectrum disorder has imposed a huge economic burden on parents having children with autism spectrum disorder in China, who need more support than the current health care system provides.

Peer support interventions for parents and carers of children with complex needs.

Peer support interventions for parents and carers of children with complex needs.

Author Correction: Known by the Children’s Condition: Associative Stigma Among Family Carers of Children with Cerebral Palsy

Author Correction: Known by the Children’s Condition: Associative Stigma Among Family Carers of Children with Cerebral Palsy

Known by the Children’s Condition: Associative Stigma Among Family Carers of Children with Cerebral Palsy

The experience of associative stigma (stigma that persons experience because they are associated with persons who belong to a stigmatized category in society) could have negative impacts on carers’ and children’s health and well-being. This descriptive qualitative study therefore focused on associative stigma among family carers of children with cerebral palsy (CP) in the Greater Accra Region of Ghana. Using the convenience sampling technique, sixty-one family carers were purposively recruited to participate in the study. Focus group discussions (FGDs) and in-depth interviews (IDIs) were conducted to collect data. With the permission of participants, the FGDs and IDIs were audio-recorded and transcribed. Braun and Clarke’s (2006) thematic analysis was employed to analyze the data. The findings indicated that the carers of children with CP were stigmatized and discriminated against by family and non-family members. Evidence showed that myths and beliefs underpinned people’s negative attitudes toward carers included in the study. Moreover, the family carers utilized different strategies, such as avoidance, discounting, reacting, and accepting, to address associative stigma. Given that carers’ experiences of stigma and discrimination are often overlooked, family counseling and education could be provided to help challenge the negative perceptions and beliefs people have about the condition. This would help improve the well-being of carers, particularly mothers of children with cerebral palsy.

Online Mindfulness Stress Intervention for Family Carers of Children and Adults with Intellectual Disabilities: Feasibility Randomized Controlled Trial

ObjectivesFamily carers of people with intellectual disabilities (ID) are twice as likely as other carers to experience stress and mental ill-health, but research exploring interventions is sparse. Online mindfulness may provide an accessible, cost-effective resource. The addition of guided telephone support could help to tailor an existing intervention for this population. A feasibility randomized controlled trial (RCT) was conducted to inform the development of a definitive RCT.MethodsSixty participants were randomized to complete Be Mindful (a brief online mindfulness intervention) either with or without additional Peer Mentor support. Feasibility of recruitment, retention, intervention adherence, and acceptability of study design was examined. Preliminary analyses were undertaken on participant-reported outcomes pre- and post-intervention. Eighteen semi-structured interviews were conducted as a process evaluation.ResultsFeasibility outcomes indicate that it would be possible to recruit and retain (88%) participants to a definitive RCT, and that the study design and intervention are acceptable. The addition of guided telephone support was not burdensome; indeed, it was additionally motivating. Telephone support can be delivered with high fidelity, but this is inconsistent and requires further piloting. Preliminary comparison data indicate small, but non-significant, improvements for participants receiving guided telephone support relative to those who did not over time.ConclusionsIt is feasible to deliver online mindfulness with additional telephone-guided support to family carers of people with ID, and this may lead to small benefits over receiving online mindfulness alone. A definitive RCT can be planned to examine the effectiveness and cost-effectiveness of this intervention.

Family Care For Children With Hearing Impairment:, Reality And Challenges

Family Care For Children With Hearing Impairment:, Reality And Challenges

Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support.

Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3days into the patient's hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.

Supporting family carers of children and adults with intellectual disability

Summary The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services. Moreover, changes in provision over a 10-year period were monitored and variations in provision across the country were ascertained. Findings Overnight breaks were the dominant form of family support in Ireland. However, they were available to fewer persons in 2017 compared to 2007, whereas the provision of home supports remained constant. Persons with severe and profound disabilities were those most likely to receive home supports or overnight breaks as were persons aged 30 years and over. There were persistent marked differences across the country in the provision of home supports, although the variation in the usage of overnight breaks had contracted somewhat in 2017. Applications Additional investment is needed to provide supports for families, given the increasing numbers of persons with intellectual disabilities living at home. A wider range of support options would provide greater choice and arguably improve the cost-effectiveness of current resources. Frontline professionals, such as social workers, need to be to the fore in persuading service commissioners of these needs based on empirical data as well as their personal experiences.

Increased RTV in ADHD: A Novel Approach to Detect Inattention [Florida International University

Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder and the second most common mental condition in U.S. children, affecting more than 6.1 million individuals between the ages of 2-17 years. Defined by two behavioral features - inattention and hyperactivity - identifying and studying ADHD, especially related periods of inattention, a defining feature, poses an important limitation. Recent studies have identified elevated reaction time variability (RTV) as a reliable feature of ADHD, that may be related to periods of inattention. However, the neural mechanisms behind RTV, and thereby inattention, are not well understood. The default mode network (DMN) is a functional brain system responsible for internally-directed mental processes, that is active when not engaged in cognitively demanding externally directed tasks. Activation of the DMN during active states, thus, could disrupt externally directed behavior and related neurobiological mechanisms – perhaps acting as an internal distraction. We predicted that activation in the DMN during an externally directed task will be elevated during periods of increased RTV. Further, we anticipated DMN activation to precede abnormally slow responses. We used blood-oxygen level dependent (BOLD) functional magnetic resonance imaging (fMRI) while participants with and without ADHD performed a standard sustained attention to response (SART) task. We then examined the activation of the DMN during episodes of aberrant RTV, defined as reaction times more than two standard deviations from the preceding measure of variability, to ascertain the nature of the aforementioned association. The neurobiological mechanisms that are related to the attention-deficit in ADHD must be better understood to aid in diagnosis and treatment. This study aims to be the first to provide comprehensive evidence of the neural underpinnings behind increased RTV and thereby inattention in individuals with ADHD. The current system to diagnose ADHD in children is based on potentially subjective behavioral observations by parents and teachers. Identifying increased RTV as a behavioral marker of ADHD with a well-characterized neurobiological mechanism may enable a more effective and objective method of diagnosis, resulting in more successful treatment outcomes and decreased costs of care for families of children with the disorder.

Evaluating the Effect of a Need-based Program for Caregivers on the Stress, Anxiety, Depression, and the Burden of Care in Families of Children with Attention Deficit-hyperactive Disorder.

Background:Attention-deficit hyperactive disorder (ADHD) is the most common behavioral disorder of childhood, and due to its chronic nature, it would affect all the aspects of life of the child and the caregiver. Therefore, this study was conducted to determine the effect of a program based on the needs of caregivers on stress, anxiety, depression, and burden of care in families of children with ADHD.Materials and Methods:This randomized clinical trial was conducted on 70 family caregivers of children with ADHD from June to September of 2016. After convenience sampling, eligible samples were randomly allocated into two groups of control and intervention. The intervention group received the need-based educational program in eight sessions and the participants of the control group participated in two group sessions where they expressed their problems and experiences. Data were gathered through Zarit Burden Interview and Depression Anxiety and Stress Scale (DASS)-42 and then were analyzed using descriptive and inferential statistics.Results:The mean scores of stress, anxiety, depression, and burden of care had a significant difference between both groups right after and 1 month after the intervention (p < 0.001), whereas in the control group, there was no gradual decrease in the mean scores of the dependent variables.Conclusions:The need-based educational program might reduce the level of stress, anxiety, depression, and burden of care in families of children with ADHD. It is recommended to develop similar programs and evaluate them through various studies. The use of nonpharmacological treatment of these children is evident in the results.

2418 Post-traumatic stress symptoms in caregivers of pediatric hydrocephalus population

OBJECTIVES/SPECIFIC AIMS: The goal of this study is to characterize traumatic events and post-traumatic stress symptom severity experienced by caregivers of children with hydrocephalus. Results will eventually be evaluated and compared with demographic and medical characteristics. This study is part of a larger research project that aims to (1) determine the prevalence and risk factors for post-traumatic stress symptoms in pediatric hydrocephalus patients and their caregivers; (2) develop a targeted intervention to mitigate its effects and pilot test the intervention. METHODS/STUDY POPULATION: Caregivers of children with hydrocephalus that have received surgical treatment (CSF shunt or ETV/CPC) were enrolled during routine follow up visit in a pediatric neurosurgery clinic. Caregivers completed the PTSD Checklist for DSM-5 (PCL-5), a 20-item self-report measure that assesses the presence and severity of post-traumatic stress disorder (PTSD) symptoms. RESULTS/ANTICIPATED RESULTS: Participant responses (n=56) revealed that 57.14% of caregivers indicated that their most traumatic event was directly related to their child’s medical condition. In total, 23.21% of caregivers did not specify their most traumatic event and 1.79% of caregivers indicated that they had never experienced a traumatic event. Median Total Symptom Severity Score was 11 (mean: 15.32±14.92), and scores ranged from 0 to 67; 32.14% of caregivers scored 19 or greater, and 16.07% of caregivers scored 33 or greater, a value suggestive of a provisional diagnosis of PTSD. Severity scores by DSM-V clusters were as follows: cluster B—intrusion symptoms (mean: 4.91±4.77, median: 4, range: 0–20), cluster C—avoidance symptoms (mean: 1.27±1.87, median: 0.5, range: 0–8), cluster D—negative alterations in cognition and mood (mean: 4.86±6.07, median: 2, range: 0–22), and cluster E—alterations in arousal and reactivity (mean: 4.29±4.07, median: 3, range: 0–17). DISCUSSION/SIGNIFICANCE OF IMPACT: Preliminary results from this study indicate that post-traumatic stress symptoms are prevalent among caregivers of children with hydrocephalus. These results suggest that psychosocial issues such as PTSS may be a significant problem in need of treatment, that is not traditionally addressed as part of routine care for families of children with hydrocephalus. Characterizing post-traumatic stress symptoms in this population sets the foundation for the development of screening and treatment protocols for post-traumatic stress symptoms in caregivers of children with hydrocephalus. This study is the first step towards fundamentally improving routine clinical care and quality of life for patients with hydrocephalus and their caregivers by understanding and addressing the effects of traumatic stress.

Paediatric palliative care and intellectual disability-A unique context.

Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.

Family-centered nursing care model in children with chronic wound

Objective To explore the effect of family-centered nursing care model in children with chronic wound. Methods A total of 51 children with chronic wound from March to May 2016 were organized as experimental group and given nursing care according to the family-centered model, including pain and humanistic care, health education in various ways, family care instruction and continued-nursing. A total of 59 children with chronic wound from November 2015 to February 2016 were organized as control group and given conventional nursing. The effect were observed and compared between two groups. Results Pain scores, wound healing time, main caregivers' knowledge scores of wound care and satisfaction degree for nursing care were (3.86±1.63) points, (25.63±7.07) days, (26.22±5.21) points, (2.65±0.60) points respectively in experimental group, and (5.56±1.77) points, (34.26±11.69) days, (18.03±4.43) points, (2.22±0.67) points respectively in control group. There were significant differences between two groups(t=3.505-8.911, all P < 0.05). Conclusions Family-centered nursing model can relieve pain, promote the healing time, advance the effects of education and the qualities of nursing care, meantime, provide a good base for family care of children with chronic wound. Key words: Nursing care; Health education; Chronic wound; Family-centered care

Respite Care for Families of Children with Disabilities: A University/Faith Community Model.

Families of children with disabilities or special healthcare needs report respite care as a great need, yet availability of such care is scarce. A partnership developed between a nursing school in the Southeast and a faith community, to provide respite care and summer camps, resulted in a win-win situation for families, children, interprofessional students and educators, the faith community, and volunteers. This article explains the need for respite, how schools of nursing and faith communities can partner, and the benefits to all stakeholders.