Caregiver Vigilance Research Articles

Life on the Frontlines: Caregiver Experience of Pediatric Cerebrospinal Shunt Malfunction

BackgroundWe aimed to characterize the caregiver experience in the detection and evaluation of pediatric cerebrospinal shunt malfunction. MethodsIn this descriptive qualitative study, we recruited English-speaking caregivers of children aged five years or less in collaboration with a stakeholder organization. Semistructured interviews were completed; content targeted the caregiver experience of shunt malfunction. Interviews were audio-recorded, transcribed, and deidentified. Qualitative data were analyzed using a conventional content analysis approach. ResultsWe enrolled 20 caregivers (n = 20 mothers). The median child age at the time of the interview was 2.8 years; about half (n = 11) were born prematurely and the majority (n = 15) had shunts placed at age less than six months. Caregiver experiences of shunt malfunction were grouped into three major themes: (1) my error could be life or death: the high stakes of shunt malfunction and the ambiguity of malfunction symptoms exacerbated baseline caregiver vigilance; (2) finding and engaging people who can help: hurdles during malfunction evaluation included locating trusted clinicians and advocating for parental intuition; and (3) how the shunt defines our family: caregivers described evolving expertise and modifications made to everyday life due to the threat of malfunction. ConclusionsIn this study, caregivers highlighted the challenges associated with recognizing shunt malfunction, accessing necessary treatment, and the impact of their child's shunt on family life. Future work should leverage these findings to inform counseling about shunt malfunction, develop interventions to better support families in shunt malfunction identification, and educate medical providers.

Care Recipient Diagnosis Moderates the Relationship Between Caregiver Worry and Vigilance

Family members of persons diagnosed with dementia or a traumatic brain injury (TBI) are often relied upon to provide daily support to their care recipients. However, research on the differing experiences of caregivers based on care recipient diagnosis is limited. The aim of this study was to examine the impact of worry and feelings of vigilance among caregivers of people with cognitive impairment due to either TBI or dementia. This sample included 61 caregivers (88.5% female, mean age 57.3±15.5) of persons with either a TBI (n = 32) or dementia (n = 29). Worry was assessed with the Penn State Worry Questionnaire and Vigilance was assessed with the Caregiver Vigilance Scale. Linear regressions revealed that after controlling for age, care recipient diagnosis moderated the relationship between worry and caregiver vigilance. Specifically, worry was significantly associated with caregiver vigilance in those caring for someone with dementia; however, a similar relationship was not seen in those caring for someone with a TBI. This suggests caregivers of people with TBIs have a different experience of worry and vigilance than caregivers of people with dementia. These findings demonstrate the need for more research on the unique needs of caregivers of people with TBIs. Additionally, this research suggests interventions targeting worry may be particularly effective in supporting caregivers of people with TBIs.

"I Didn't Realize How Hard It Was Going to Be Just Transitioning Back into Life": A Qualitative Exploration of Outcomes for Survivors of Pediatric Septic Shock.

Recovery following pediatric critical illness is multifaceted and complex. While most critically ill children survive, many experience morbidities in physical, emotional, cognitive, and social function. We aimed to deeply explore and describe the multidimensional impact of pediatric septic shock for affected children and their families at the granular level using exploratory qualitative methodology. We performed semistructured telephone interviews of adolescents and caregivers of children admitted with community-acquired septic shock to two tertiary pediatric intensive care units in the United States. Interviews were conducted within two years of hospital admission, and were recorded, transcribed, and analyzed using thematic analysis. Two adolescents and 10 caregivers were interviewed. Participants described meaningful and long-lasting outcomes of septic shock on multiple dimensions of their lives. The adolescents and caregivers described substantial negative consequences on physical health and function which resulted in increased medical complexity and heightened caregiver vigilance. The physical impact led to substantial psychosocial consequences for both the child and family, including social isolation. Most caregivers expressed that septic shock was transformational in their lives, with some caregivers describing posttraumatic growth. This preliminary study provides a novel, granular view of the multidimensional impact of septic shock in pediatric patients and their families. Exploring these experiences through qualitative methodology provides greater insight into important patient and family outcomes. Deeper understanding of these outcomes may support the development of meaningful interventions to improve quality of life for children and their families following critical illness.

Effects of Cell Phone Use on Caregiver Supervision and Child Injury Risk.

Unintentional injuries are the leading killer of children in the United States. Caregiver supervision decreases child injury risk; however, little research has examined the effects of distractions (e.g., cell phone use) on caregiver supervision and subsequent ability to protect children from injury. In particular, despite the prevalence of cell phone use, no research has examined the degree to which caregiver cell phone use may impair caregivers' ability to supervise their children effectively. The present study used a within-subjects design to examine whether caregiver cell phone use impacted caregiver vigilance and child engagement with potential hazards. A total of 51 caregiver-child dyads were observed in a pseudo hazards room across three conditions (cell phone distraction, pen-and-paper distraction, no distraction) to examine the effects of cell phone use on caregiver vigilance and child behavior (i.e., engagement with hazards) related to injury risk. Caregiver vigilance was higher in the no distraction condition compared to the two distraction conditions (cell phone and pen-and-paper). Moreover, child engagement with hazards was lower in the no distraction condition than in the two distraction conditions. Although both distraction conditions impaired caregiver vigilance, caregivers were more impaired in the pen-and-paper condition compared to the cell phone condition. Regardless the form, distracting tasks (both cell phone use and pen-and-paper task) impacted both caregiver and child behavior associated with injury risk. It is important that professionals working with parents educate them about the risks of supervising children while distracted and encourage mindful supervision to ensure safety.

574 Sleep-disordered breathing symptoms in children who co-sleep: Are caregivers better reporters?

Abstract Introduction Medical consensus advises against co-sleeping for infants to protect against SIDS, but co-sleeping in older children is often dismissed if not associated with caregiver distress. While some families may choose to co-sleep due to cultural, circumstantial, or psychosocial factors, this choice can also be due to medical concerns warranting greater caregiver attention. We aimed to explore characteristics of co-sleeping children referred for sleep disordered breathing and hypothesized that children with polysomnogram confirmed obstructive sleep apnea (OSA) would have higher caregiver-reported sleep disordered breathing symptoms as compared to children without confirmed OSA. Methods Caregivers who accompanied their child for polysomnogram were asked to complete a questionnaire that included sleep-related symptoms of sleep-disordered breathing (snoring, apnea, gasping/choking), restlessness, and parasomnias. Inclusion criteria are age >1.0 years and <18 years, baseline study for sleep disordered breathing, and completed questionnaire. Retrospective chart review included demographic information, BMI, co-morbid conditions, and polysomnogram results. The cohort was divided into 2 groups based on polysomnogram confirmed diagnosis of “snoring” or “OSA”. Results Of 75 co-sleeping children, 27 (36%) had a diagnosis of snoring and 48 (64%) of OSA. The cohort was similar in age, gender, and insurance type for snoring and OSA groups (Average 5.7 +/- 2.6 yrs and 5.4 +/- 2.9 yrs, respectively; 41% and 35% female, respectively; 44% and 50% Medicaid, respectively). Notable differences in the snoring and OSA groups were found with BMI z-score (1.6 +/- 4.6 and 1.0 +/- 1.5, respectively) and absence of co-morbid conditions (44% and 63%, respectively). Regarding reported symptoms, the snoring-group compared to OSA-group had lower report of gasping/choking (19% vs 29%), bedwetting (7% vs 13%), and nightmares (7% vs 15%); and had higher report of movement (74% vs 60%), kicking (48% vs 31%), and startle/jump (30% vs 19%). Conclusion Although we predicted that co-sleeping would be associated with increased caregiver vigilance, witnessed sleep-disordered-breathing symptoms was only higher for report of gasping/choking and did not differ significantly for report of snoring and apnea in children with and without OSA. Interestingly, co-sleeping in children without OSA appeared to be more strongly related to report of sleep disruption in the form of restless sleep. Support (if any):

Exploring the Relationship Between Day-to-Day Care and Caregiver Vigilance

A demanding aspect of caregiving for a relative with dementia is need for constant vigilance of their behavior and well-being. Vigilance is associated with higher quality of care, but can take a toll on caregivers who have few opportunities for respite. Home- and community-based services have the potential to offer caregivers relief from constant vigilance. Using in-depth interviews with 30 rural caregivers, we found that service use did not necessarily provide relief from constant vigilance. Caregivers typically needed to monitor aspects of home- and community-based services and care facilities such as scheduling and quality of care from CNAs. In contrast, some caregivers found respite from constant vigilance when they used formal services—typically in extreme situations such as when a husband with dementia became violent and moved temporarily to a long-term care facility. Findings connect caregiver needs and concerns related to vigilance with availability, quality, and use of formal services.

Assessing vigilance in caregivers after traumatic brain injury: TBI-CareQOL Caregiver Vigilance.

Caregivers of individuals with traumatic brain injury (TBI) frequently experience anxiety related to the caregiver role. Often this is due to a caregiver's perceived need to avoid people and situations that might upset or "trigger" the care recipient. There are currently no self-report measures that capture these feelings; thus, this article describes the development and preliminary validation efforts for the TBI-Caregiver Quality of Life (CareQOL) Caregiver Vigilance item bank. A sample of 532 caregivers of civilians (n = 218) or service members/veterans (SMVs; n = 314) with TBI completed 32 caregiver vigilance items, other measures of health-related quality of life (RAND-12, Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Social Isolation, Caregiver Appraisal Scale), and the Mayo-Portland Adaptability Inventory-4. The final item bank contains 18 items, as supported by exploratory and confirmatory factor analysis, item response theory graded response modeling (GRM), and differential item functioning investigations. Expert review and GRM calibration data informed the selection of a 6-item short form and programming of a computer adaptive test. Internal consistency reliability for the different administration formats were excellent (reliability coefficients ≥ .90). Three-week test-retest stability was supported (i.e., r ≥ .78). Correlations between vigilance and other self-report measures supported convergent and discriminant validity (0.01 ≤ r ≤ .69). Known-groups validity was also supported. The new TBI-CareQOL Caregiver Vigilance computer adaptive test and corresponding 6-item short form were developed using established rigorous measurement development standards, providing the first self-report measure to evaluate caregiver vigilance. This development work indicates that this measure exhibits strong psychometric properties. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Emotional Suppression and Hypervigilance in Military Caregivers: Relationship to Negative and Positive Affect.

To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect. Community. One hundred sixty-five caregivers of service members/veterans with TBI. Retrospective database analysis. TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience). When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect. Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.

Elder neglect-Oral diseases and injuries.

Elder neglect (EN) is the failure of a designated caregiver to meet the needs of a dependent older person. World EN prevalence, meta-analyzed in this study, is 1.0% or 1.8% according to different statistical methods. Referring alleged EN cases to Adult Protective Services (APSs) by healthcare workers (HCWs) is mandatory in many countries. However, only few claims are substantiated, as EN could be confused with Self-Neglect, and neglect could be unintentional or due to caregiver unawareness. Screening tools are inaccurate, and their use is discouraged by public health organizations, because they lead to too many false positives, which engulf the already overwhelmed APSs. HCWs need effective tools with objective judgments, which do not hamper the HCW-caregiver-patient rapport and prevent lawsuits when allegations are unfounded. Orofacial EN manifestations (poor oral/denture hygiene, lack of needed/improper dentures, dry mouth, skin/mucosal rashes) are essential Forensic Markers of EN. I classified EN-associated oral diseases according to the unmet needs into four groups: (1) traumatic injuries due to lack of caregiver vigilance (e.g., maxillofacial fractures); (2) diseases due to oral hygiene deficiency (e.g., root caries); (3) diseases typical of the elderly with late/no diagnosis (e.g., oral cancer); and (4) diseases typical of the elderly exacerbated by psychological distress (e.g., oral lichen planus).

G-113 Perinatally HIV infected adolescents and early transition to adult care

Background: Adolescents with chronic diseases require youth directed services. In Jamaica, children are transferred at age 12 years to adult care in the public hospitals. We compare the outcomes of perinatally HIV infected adolescents (PHIVA) who were transferred to adult care with those in pediatric care. Methods: Adolescents aged 10–19 years from both adult and pediatric clinics were enrolled in an adolescent clinic established at Cornwall Regional Hospital in 2014. Demographic, clinical, lab and adherence (clinic visits, pharmacy refill, self reported medication) were reviewed from surveillance data, charts and adherence counselor reports. PHIVA in adult and pediatric care were compared and factors associated with sustained viral suppression (<400 copies/ml) were reviewed using student's t test and chi square analysis. Results: Among 57 PHIVA, 22 (38%) were transferred to adult care at a median age of 13 years after a median of 5 years in pediatric care. At the time of transfer to adult care 10 (45%) were on first line treatment, the median CD4 was 486/mm3 (range 23–2342) and 7 (32%) had viral suppression. Five children died (4 in adult cares) and 2 defaulted (pediatric care). Mean ages were 16 years and 12 years in adult and pediatric clinic cohort respectively. Full disclosure was made to 90% of adolescents in adult care and 28% in pediatric care (P < 0001 ). Viral suppression was noted in 36% of children in adult care compared with 64% in pediatric care (P < 0.05).Virologic suppression rates were 31/100 person years and 37/100 person years in adult and pediatric clinics respectively. An undetectable status was associated with vigilant caregiver support (P = 0.002). The children who died all had poor caregiver support (P < 0.001). Conclusions: Premature transition to adult care may result in a reduction of viral suppression rates without adequate youth directed services. Caregiver vigilance must be maintained and youth friendly services be advocated for in resource limited settings to ensure survival of this aging cohort.

Pelvic Organ Prolapse and Relationship with Skeletal Integrity

Health burden related to osteoporotic fractures in an aging female population far exceeds that imposed by other chronic disorders such as cardiovascular disease and breast cancer. Bone mineral density assessment and clinical risk factors provide independent insights into fracture risk in individuals. A finite list of clinical risk factors are identified as prognostic of fracture risk, namely among aging women, including low body mass, compromised reproductive physiology (e.g., prolonged periods of amenorrhea and early menopause), parental and personal histories of fracture, and alcohol and tobacco use. Pelvic organ prolapse is a common gynecologic entity and a contributor to age-related morbidities. The purpose of this review is to communicate data identifying pelvic organ prolapse as another clinical risk factor for fracture risk in postmenopausal women and to increase the caregiver's vigilance in anticipating and instituting preventive care strategies to a population (i.e., postmenopausal women with clinically appreciable pelvic organ prolapse) that may be at an enhanced lifetime risk for skeletal fractures.

Use of Cognitive Enhancement Medication in Persons With Alzheimer Disease Who Have a Family Caregiver: Results From the Resources for Enhancing Alzheimer's Caregiver Health (REACH) Project

Objective Aging populations show increased prevalence of cognitive impairment and dementia. Recent efficacy studies report on prescription medications and herbal preparations that affect cognitive functioning, but the prevalence and correlates of cognitive-enhancement (CE) medication use among community-dwelling older persons is not well studied. The authors examined the frequency and appropriateness of use, the importance of a family caregiver in medication decisions for dementia patients, and differences in access to medical care. Methods REACH is a multisite feasibility study of several approaches to reducing the negative impacts of caregiving on those living with a family member with dementia. Data on medication use by care-recipients were collected at baseline and 1 year later. Results At baseline, 31% of 1,222 care-recipients were using a CE medication. Factors independently related to CE use were age, education, functional status, and caregiver vigilance. Within 1 year, 14% started and 30% quit taking CE. Care-recipients more likely to be Starters had spouse-caregivers, more education, and fewer baseline ADL impairments. Quitters had more ADL deficits at baseline and became less able to perform ADL at follow-up than those who continued on CE. Conclusions CE medication use among dementia patients with a family caregiver is relatively common, though there is substantial geographic variability. Our findings are mixed with respect to appropriate use of CE medications, suggesting areas for physician education. Our data indicate the importance of the caregiver in CE medication use and suggest that there may be disparities in access to healthcare among people with cognitive impairment. Aging populations show increased prevalence of cognitive impairment and dementia. Recent efficacy studies report on prescription medications and herbal preparations that affect cognitive functioning, but the prevalence and correlates of cognitive-enhancement (CE) medication use among community-dwelling older persons is not well studied. The authors examined the frequency and appropriateness of use, the importance of a family caregiver in medication decisions for dementia patients, and differences in access to medical care. REACH is a multisite feasibility study of several approaches to reducing the negative impacts of caregiving on those living with a family member with dementia. Data on medication use by care-recipients were collected at baseline and 1 year later. At baseline, 31% of 1,222 care-recipients were using a CE medication. Factors independently related to CE use were age, education, functional status, and caregiver vigilance. Within 1 year, 14% started and 30% quit taking CE. Care-recipients more likely to be Starters had spouse-caregivers, more education, and fewer baseline ADL impairments. Quitters had more ADL deficits at baseline and became less able to perform ADL at follow-up than those who continued on CE. CE medication use among dementia patients with a family caregiver is relatively common, though there is substantial geographic variability. Our findings are mixed with respect to appropriate use of CE medications, suggesting areas for physician education. Our data indicate the importance of the caregiver in CE medication use and suggest that there may be disparities in access to healthcare among people with cognitive impairment.

Use of Cognitive Enhancement Medication in Persons With Alzheimer Disease Who Have a Family Caregiver: Results From the Resources for Enhancing Alzheimer's Caregiver Health (REACH) Project

Aging populations show increased prevalence of cognitive impairment and dementia. Recent efficacy studies report on prescription medications and herbal preparations that affect cognitive functioning, but the prevalence and correlates of cognitive-enhancement (CE) medication use among community-dwelling older persons is not well studied. The authors examined the frequency and appropriateness of use, the importance of a family caregiver in medication decisions for dementia patients, and differences in access to medical care. REACH is a multisite feasibility study of several approaches to reducing the negative impacts of caregiving on those living with a family member with dementia. Data on medication use by care-recipients were collected at baseline and 1 year later. At baseline, 31% of 1,222 care-recipients were using a CE medication. Factors independently related to CE use were age, education, functional status, and caregiver vigilance. Within 1 year, 14% started and 30% quit taking CE. Care-recipients more likely to be Starters had spouse-caregivers, more education, and fewer baseline ADL impairments. Quitters had more ADL deficits at baseline and became less able to perform ADL at follow-up than those who continued on CE. CE medication use among dementia patients with a family caregiver is relatively common, though there is substantial geographic variability. Our findings are mixed with respect to appropriate use of CE medications, suggesting areas for physician education. Our data indicate the importance of the caregiver in CE medication use and suggest that there may be disparities in access to healthcare among people with cognitive impairment.

Promoting safety of young children with guided participation processes

The infant's complete dependence on others for protection and the young child's desire to explore the world puts them in harm's way without the caregiver's vigilance and commitment to practices that promote safety. Using a car seat, placing an infant in the supine position for sleep, and watching and monitoring a child's activities within the home are just a few of the safety practices required of a young child's caregiver. Safety information alone may not be adequate to develop a caregiver's competencies for safe practice. A process of clinician-caregiver co-participation to support competency development for current and future caregiving safety practice is described for clinicians who are in a position to support development of these competencies, including public health nurses and nurse practitioners.

Vigilance. Evolution and definition for caregivers of family members with Alzheimer's disease.

The language of caregiving relies heavily on terms that are frequently negative such as caregiver stress and burden, but these are not universally accepted phenomenon. The purpose of this article is to report on the development of caregiver vigilance and to suggest it offers both neutral terminology and a means to include caregivers' perceptions of their supervisory role. The concept of vigilance emerged from a qualitative study of caregivers of family members with Alzheimer's disease. Vigilance is defined as the caregivers' continual oversight of their care recipients' activities. The five key components of vigilance were watchful supervision, protective intervening, anticipating, always on duty, and being there. Vigilant caregivers saw themselves as "on duty" even when they were not "doing things." The findings of this study support caregivers' perceptions of 24-hour-a-day responsibility. Nurses need to realize that caregiver vigilance is not necessarily diminished when professional caregivers intervene or institutionalization occurs. Debriefing caregivers about their unique family caregiving knowledge and incorporating it into caregiving is a key strategy for nurses to use to build caregiver trust and reduce their vigilance time.

The Caregiver Vigilance Scale: application and validation in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project.

This article reports on the measurement properties of Caregiver Vigilance, a four-item caregiver self-report of perceived oversight demand for Alzheimer's disease and related disorders family caregiving. The self-report uses data from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project, a multisite National Institutes of Health (NIH) sponsored study of over 1,200 family caregivers. Results indicate that the items were clearly understood by the racially/ethnically diverse respondents; and, when responses were transformed into a summary scale and analyzed, unidimensionality was evident and internal consistency reliability favorably demonstrated. We suggest using the Caregiver Vigilance Scale in conjunction with traditional burden measures to systematically include the caregiving time associated with protectively watching over care recipients and the daily duration of this responsibility. We also highlight the practical utility of selected items for potential use in the caregiver assessment process.

Quantitative risk analysis

Problem. Each year, unsafe consumer products are involved in millions of injuries and thousands of fatalities around the world. There is a need to quantitatively assess the risks to consumers posed by all types of consumer products. Objective. Quantitative Risk Analysis (QRA) is a scientific methodology that was developed to quantitatively demonstrate the potential risk associated with any given consumer product. QRA is based on the Risk Equation which is Risk = Hazard X Exposure. Methods. Key factors affecting Risk were studied. Factors impacting Hazard include Design Defects, Manufacturing Defects, and Foreseeable Use. Factors impacting Exposure include Product Quantity in distribution, Product Durability, Caregiver Vigilance, and Product Accessibility. Monte Carlo Simulation methods were utilized to generate estimates of product-related risk. Results. The Kinder Egg is used as an example and the QRA results for this product in the North American market are presented. Conclusion. QRA results can do the following: 1.) Determine if a design meets desired or necessary safety expectations 2.) Allow one to understand which components of a given design can be modified to ensure the greatest improvements in the safety of a given product 3.) Guide the development of product safety specifications and requirements and 4.) Determine if a recall is warranted. QRA can benefit risk managers and others by allowing them to identify the critical factors influencing the risks posed by consumer products in the global marketplace.