P.122 The Pediatric Neuroirritability Management Protocol at the Stollery Children’s Hospital – Inspired by an Irritable Infant with GM3 Synthase Deficiency

Background: We describe an infant with a diagnosis of GM3 synthase deficiency, presenting with severe neuroirritability from birth. He required multiple admissions due to extreme agitation and caregiver burnout. Multiple pharmacological agents were tried, and the effect of each medication was modest and short-lasting at best. The literature on the management of neuroirritability in children with progressive genetic and metabolic conditions is sparse, and a neuroirritability management protocol has yet to be developed at our institution. Methods: We searched for relevant primary research and articles on PubMed. We reviewed the evidence of each pharmacological agent and added non-pharmacological strategies. We developed management guidelines for neuroirritability at our hospital. This protocol was reviewed by several pediatric neurologists and pediatric palliative care specialists at the Stollery and SickKids Hospitals. Results: We present the Pediatric Neuroirritability Management Protocol for the Stollery Children’s Hospital. Conclusions: Further study is required to assess whether this protocol can be adapted to treat irritability in the context of other neurological conditions such as hypoxic-ischemic encephalopathy and non-accidental injury. In addition, we will expand our guidelines to include other symptoms such as spasticity, dystonia, and autonomic dysfunction.

Caregiver and Palliative Care

Palliative care aims to improve the quality of life of both the palliative care patient and their caregiver. Palliative care caregivers care for palliative care patients who suffer from symptoms and unmet needs. Most reviews and research to date have focused on the palliative patient, also called the care recipient. However, we still have little knowledge about the palliative care caregivers, including the risk factors of these caregivers becoming overburdened leading to caregiver burnout. The objective of this review was to examine the responsibilities of palliative care caregivers and the associated risks of these caregivers developing caregiver burden. We review the caring work of the caregivers, the types of caregivers, the differences between palliative care and general caregivers, the different types and levels of problems they face in caring for their patients and the risk factors of developing palliative care caregiver burden. We hope this review will increase awareness of this problem and help to improve the palliative care system to look after the needs of not only the patients in the system but also the patients’ caregivers, who play such an important role.

Burnout in the Primary Caregivers of Children With Chronic Conditions and its Related Factors

Background: A majority of parents of children with chronic illness encounter physical conditions, as well as some degrees of burnout, anxiety, and depression. This study examined the prevalence of burnout in the primary caregivers of children with chronic conditions and its related factors. Methods: A descriptive cross-sectional study was conducted on 385 family caregivers of children with chronic conditions who were selected by convenience sampling method from 4 healthcare centers in Kashan and Isfahan Provinces, Iran. A demographics questionnaire and the Maslach Burnout Inventory (MBI) were used to gather the required data. The MBI assesses caregiver burnout in 3 domains of emotional exhaustion, depersonalization, and reduced personal accomplishment. The obtained data were analyzed in SPSS using Mann-Whitney U test, Kruskal-Wallis test, Chi-Squared test, Fisher’s Exact test, Analysis of Variance (ANOVA), and linear regression analysis. P<0.05 was considered significant. Results: The Mean±SD age of the examined caregivers and children were 38.2±8.04 and 8.9±4.9 years, respectively. Fifty percent of the research participants were fathers, and 74.3% had a family size of >4 members. The ill children were mostly boys (60%) and afflicted with renal (45.2%) or neurological (18.2%) disorders. The mean scores of the caregivers in the 3 subscales of emotional exhaustion, depersonalization, and personal accomplishment, were 22.21, 6.40, and 13.24, respectively. However, 62.3% and 47.9% of the caregivers experienced high or moderate levels of emotional exhaustion and depersonalization; nearly all of them (99.2%) experienced reduced personal accomplishment. The age of the child, the type of chronic condition, the frequency of medical visits, as well as the caregiver’s age, job, income, and family size, could predict caregiver burnout (r2=0.17). Conclusion: The family caregivers of children with chronic conditions experience moderate burnout. Nurses and other healthcare providers should be aware of the signs of caregiver burnout and its contributing factors; accordingly; appropriate plans should be made for the periodic evaluation of family caregivers.

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Background Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

A Harmful Care: The Association of Informal Caregiver Burnout With Depression, Subjective Health, and Violence

Providing informal care to a relative can lead to informal caregiver burnout, which is expected to lead to deleterious consequences. Among these consequences lie the risk of perpetrating violent behaviors against the care-recipient, the caregivers’ risk of depression, and their low subjective health. To investigate these associations, a sample of 499 informal caregivers completed a questionnaire addressing informal caregiver burnout, depression, subjective health, and violence. Hierarchical regression models were used to investigate the potential association of burnout with these potential consequences, while controlling for sociodemographic variables and received violence. The results show that burnout, and especially emotional exhaustion, is significantly associated with depression, low subjective health, and perpetrated physical violence, but not with perpetrated psychological violence. For both psychological and physical violence, it appears that receiving violence is one of the best predictors of perpetrating violence. With these results, this cross-sectional study confirms the association of informal caregiver burnout with deleterious consequences—even if this observation must be pondered—and the central role of received violence in predicting perpetrated violence, suggesting the risk of violence escalation. The implications of these results suggest that the emotional state of informal caregivers is one of the indicators of potential deleterious consequences and should, as such, be considered as a warning signal by field workers.

COVID-19 and Alternative Care in South Africa: Children’s Responses to the Pandemic. A Case Study from a Child and Youth Care Centre in Mogale City

The experiences from a case study are evaluated against the aspects such as emergency response to vulnerable populations and other sources from the literature to serve as guidelines for the management of an epidemic in a child and youth care centre (CYCC). To help understand the effects of the epidemic on the centre, this article describes experiences in terms of the meeting of needs. A discussion of the following are part of the article: • A reflection will be provided on the observed stages the children and child and youth care workers (CYCWs) went through during 177 days of a national lockdown; • Indications of caregiver burnout; • Experiences around the meeting of children’s needs through the lens of child and youth care (CYC) theory; and • Proposed areas needing attention in mitigating risks. Some lessons learnt from the daily routine established to manage the lockdown regulations, sometimes experienced as nonsensical, are shared. From these reflections, questions for research are provided from a practice-based evidence approach, mainly aimed at determining the readiness of a CYCC to manage a state of disaster, while needing to focus on meeting children’s needs.

Development of a Novel Measure of Informal Caregiver Burnout

Burnout is a concept which has permutated most settings over recent decades. However, due to its roots in occupational research there exists both theoretical and practical gaps to consider when measuring burnout within non-occupational settings, such as informal caregiving. This study developed and validated a measure of burnout for informal caregivers of individuals with Alzheimer’s disease and dementia, the Informal Caregiver Burnout Inventory (ICBI). Theoretical and methodological implications are discussed. Development included a 10-step method for scale development proposed by Boateng and colleagues (2018). Expert feedback on item appropriateness and clarity was collected from 33 caregivers or related professional experts and used to modify the original item-bank. Following this, a national sample of 255 current caregivers was gathered. This survey included the ICBI, two gold-standard measures of burnout, and measures of depression and caregiver burden. Item reduction analysis was used to remove items with poor item-total and inter-domain correlations. The ICBI shows good item-agreement (Cronbach’s alpha= .88) and principles of Item Response Theory were used to measure item- and scale-wide information captured. Convergent validity was then compared against other measures of burnout using Bland-Altman Plots. Divergent validity was similarly assessed by comparing the ICBI to a depression questionnaire. Finally, the predictive validity of each burnout measure was compared to their association with burden and depression. This study suggests that the ICBI may perform adequately as an index of caregiver burnout, and thus is address a methodological and clinical gap in current efforts to understand the dynamics of caregiving.

Smart home technology solution for night-time wandering in persons with dementia

Introduction More than half of persons with dementia will experience night-time wandering, increasing their risk of falls and unattended home exits. This is a major predictor of caregiver burnout and one of the major causes of early institutionalization. Methods Using smart home technologies such as sensors, smart bulbs, pressure mats and speakers, the Night-time Wandering Detection and Diversion system is designed to assist caregivers and persons with dementia that are at risk of wandering at night. Being placed in homes around Ottawa for a 12-week trial, the system allows caregivers to rest peacefully in the night, as it detects when the person with dementia gets out of bed and automatically provides cue lighting to guide them safely to the washroom. The system also uses prerecorded audio prompts, if they venture from the bedroom, only waking the caregiver when the person with dementia opens an exit door. Results Thus far, the average depression and anxiety in caregivers have been improved after the 12 weeks, and most have said that they sleep more peacefully. Conclusion The system has proven successful in supporting the safety of persons with dementia as well as their caregivers.

Treating complexity in the older adult - the role of the geriatric giants

As people age, they accumulate medical conditions. Geriatric giants comprise a group of conditions that lead to significant mortality and morbidity and contribute to the complexity in treating geriatric patients. They are common and rarely occur in isolation. The 5 Is of geriatric giants are: iatrogenesis, immobility, instability, incontinence and impaired cognition. Consequences for the patient and their caregivers include loss of functional independence, institutionalisation and caregiver burnout. Primary care practitioners are often the first port of call for geriatric patients in South Africa and by asking a few key questions and performing a thorough examination; these conditions can be recognised early. Whilst there are often limitations to cure, the main aim is to maintain the older adult’s functional independence as much as possible, and by following an organised management approach to each of these conditions, the quality of life of patients can be improved.