Caregiver Acceptance Research Articles

Caregiver acceptability of a novel social needs program in a pediatric emergency department during the coronavirus disease 2019 pandemic: a qualitative study

Purpose: The coronavirus disease 2019 pandemic has heightened social needs of many families, with the demand for resources, such as food, housing assistance, utilities, childcare, and mental health, rising throughout the United States. These needs were recognized by the Division of Emergency Medicine and Department of Social Work at Children’s Hospital of Philadelphia in April 2020, resulting in the creation of “Family Connects,” a program that mobilizes a multidisciplinary workforce to meet social needs in an emergency department (ED). We aimed to understand experiences of families who engaged with and received information about the resources through the program. Methods: We conducted a qualitative, semi-structured, telephone interview study with a purposive convenience sample of adult participants who visited our ED as legal guardians of their ill or injured children from December 2020 through February 2021 and were contacted by a Family Connects representative. Participants were recruited via phone calls and asked questions regarding their perspectives of the program logistics, the telephone interaction, and the information provided about resources. The interviews were recorded, transcribed verbatim, and de-identified. Transcripts were coded by 2 independent coders and analyzed for themes by 2 reviewers and the principal investigator. Results: Twenty-eight interviews were completed with 18 families who received information about resources, and 10 who did not. Four major themes arose: overall positive experience with the program, mixed preferences surrounding modes of communication and information distribution, poor timing of phone calls during ED visit, and numerous barriers to accessing resources. Participants provided suggestions for improvement, including sending a text-alert prior to receiving the phone calls and post-ED follow-ups to help families access resources. Conclusion: Families expressed an openness to being asked about social needs, though barriers including difficulty accessing resources and suboptimal phone call timing must be addressed to improve program delivery and effectiveness.

Home Care for Bronchiolitis: A Systematic Review.

Bronchiolitis is the leading cause of pediatric hospital admissions. Hospital-at-Home (HAH) delivers hospital-level care at home, relieving pressure on the hospital system. We aimed to review the feasibility, acceptability, and safety of HAH for bronchiolitis, and assess the cost-impact to hospitals and society. Ovid Medline, Embase, Pubmed, Cochrane Library, CINAHL, and Web of Science. Studies (randomized control trials, retrospective audits, prospective observational trials) of infants with bronchiolitis receiving HAH (oxygen, nasogastric feeding, remote monitoring). Studies were limited to English language since 2000. We reviewed all studies in duplicate for inclusion, data extraction, and risk of bias. Ten studies met inclusion criteria, all for home oxygen therapy (HOT). One abstract on nasogastric feeding did not meet full inclusion criteria. No studies on remote monitoring were found. HOT appears feasible in terms of uptake (70%-82%) and successful completion, both at altitude and sea-level. Caregiver acceptability was reported in 2 qualitative studies. There were 7 reported adverse events (0.6%) with 0 mortality in 1257 patients. Cost studies showed evidence of savings, although included costs to hospitals only. Small number of studies with heterogenous study design and quality. No adequately powered randomized control studies. Evidence exists to support HOT as feasible, acceptable, and safe. Evidence of cost-effectiveness remains limited. Further research is needed to understand the relevant impact of HAH versus alternative interventions to reduce oxygen prescribing. Other models of care looking at nasogastric feeding support and remote monitoring should be explored.

Reliability and Acceptability to Caregivers of Telehealth Administration of the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) for Brazilian Youth with Down Syndrome.

To estimate test-retest reliability of the two versions of the PEDI-CAT administered via telehealth to caregivers of Brazilian young people with DS, to compare scores on the two versions, and to determine caregiver acceptance of telehealth administration of the assessment. A methodological study approved by the research ethics committee. Data collection was performed online, with a mean duration of 45.0 minutes for the content-balanced version of the PEDI-CAT and 17.5 minutes for the speedy version. In total, 28 caregivers of individuals with DS up to age 21 years participated (mean = 5.9 years; SD = 4.9 years). Intra-class correlation coefficients for the four domains of the PEDI-CAT content-balanced version and four domains of the PEDI-CAT speedy version ranged from 0.77 to 0.97. There was a statistical difference between the versions in the scores of the social-cognitive domain (p < 0.05). A mean of 105 items (SD = 21) was administered in the content-balanced version and a mean of 51 items (SD = 8) in the speedy version. All the caregivers found the method of administration of the PEDI-CAT acceptable. This study demonstrated that either version of the Brazilian version of the PEDI-CAT can be used by telehealth in clinical practice to assess children, adolescents, and young adults with DS.

Brief Report: Pediatric Saliva-Based HIV Testing: Health care Worker and Caregiver Acceptability.

Pediatric HIV testing remains suboptimal. The OraQuick test [saliva-based test (SBT)] is validated in pediatric populations ≥18 months. Understanding caregiver and health care worker (HCW) acceptability of pediatric SBT is critical for implementation. A trained qualitative interviewer conducted 8 focus group discussions (FGDs): 4 with HCWs and 4 with caregivers of children seeking health services in western Kenya. FGDs explored acceptability of pediatric SBT and home- and facility-based SBT use. Two reviewers conducted consensus coding and thematic analyses of transcripts using Dedoose. Most HCWs but few caregivers had heard of SBT. Before seeing SBT instructions, both had concerns about potential HIV transmission through saliva, which were mostly alleviated after kit demonstration. Noted benefits of SBT included usability and avoiding finger pricks. Benefits of facility-based pediatric SBT included shorter client waiting and service time, higher testing coverage, and access to HCWs, while noted challenges included ensuring confidentiality. Benefits of caregivers using home-based SBT included convenience, privacy, decreased travel costs, increased testing, easier administration, and child comfort. Perceived challenges included not receiving counseling, disagreements with partners, child neglect, and negative emotional response to a positive test result. Overall, HCWs felt that SBT could be used for pediatric HIV testing but saw limited utility for caregivers performing SBT without an HCW present. Caregivers saw utility in home-based SBT but wanted easy access to counseling in case of a positive test result. SBT was generally acceptable to HCWs and caregivers and is a promising strategy to expand testing coverage.

Salivary Steroid Collection in Children Under Conditions Replicating Home Sampling.

Measurement of salivary glucocorticoids is an accepted method for testing adrenal function but there are few data on stability during home collection. Current salivary collection techniques require active participation or present a choking hazard and are unsuitable for young children. We sought to compare different salivary collection methods; assess the stability of salivary glucocorticoids under conditions replicating home collection; and assess patient tolerability and caregiver acceptability of a salivary collection device for young children, a swab encased in an infant pacifier (SaliPac). Six healthy adults collected salivary samples using a Salivette Cortisol, passive drool, and SalivaBio at night, waking, and 3 Pm for five days. Time to collect 1-mL saliva using the SalivaBio and SaliPac and caregiver acceptability were assessed in 30 children younger than 6 years. Saliva was stored at 4 °C, room temperature (RT), and 50 °C for 24, 48, 72 hours and 1 week to replicate potential postage conditions. Salivary cortisol and cortisone concentrations were measured by mass spectrometry. There was no difference in salivary glucocorticoid concentrations using the 3 collection methods. Salivary cortisol and cortisone were stable for 72 hours at RT and 4 °C, and repeated freeze-thaw cycles did not cause significant degradation. In children younger than 6 years the SalivaBio and SaliPac were well tolerated and collected sufficient saliva for salivary steroid analysis in less than 4 minutes. Salivette, passive drool, and SalivaBio collect samples with comparable salivary cortisol and cortisone concentrations, which are stable under conditions replicating home collection. SaliPac is an acceptable device for salivary sampling in young children.

Should COVID-19 vaccines be mandated in schools? - an international caregiver perspective

ObjectivesCaregiver attitudes toward mandating COVID-19 vaccines for their children are poorly understood. We aimed to determine caregiver acceptability of COVID-19 vaccine mandates for schools/daycares and assess if opposition to mandates would result in removal of children from the educational system. Study DesignPerform a cross-sectional, anonymous survey of adult caregivers with children ≤ 18 years presenting to 21 pediatric emergency departments in the United States, Canada, Israel, and Switzerland, November 1st through December 31st, 2021. The primary outcome was caregiver acceptance rates for school vaccine mandates, and the secondary outcomes included factors associated with mandate acceptance and caregiver intention to remove the child from school. ResultsOf 4,393 completed surveys, 37% of caregivers were opposed to any school vaccine mandate. Caregiver acceptance was lowest for daycare settings (33%) and increased as the child’s level of education increased, college (55%). 26% of caregivers report a high likelihood (score of 8–10 on 0–10 scale) to remove their child from school if the vaccine became mandatory. Child safety was caregivers’ greatest concern over vaccine mandates. A multivariable model demonstrated intent to vaccinate their child for COVID-19 (OR = 8.9, 95% CI 7.3 to 10.8; P < 0.001) and prior COVID-19 vaccination for the caregiver (OR = 3.8, 95% CI 3.0 to 4.9; P < 0.001) had the greatest odds of increasing mandate acceptance for any school level. ConclusionsMany caregivers are resistant to COVID-19 vaccine mandates for schools, and acceptance varies with school level. One-fourth of caregivers plan to remove their child from the educational system if vaccines become mandated.

Study protocol: development and pilot testing of the Critical Care Pain Observation Tool for families (CPOT-Fam)

BackgroundPatients in the intensive care unit (ICU) often have limited ability to communicate making it more difficult to identify and effectively treat their pain. Family caregivers or close friends of critically ill patients may be able to identify signs of pain before the clinical care team and could potentially assist in routine pain assessments. This study will adapt the Critical Care Pain Observation Tool (CPOT) for use by family members to create the CPOT-Fam and compare family CPOT-Fam assessments with nurse-provided CPOT assessments for a given patient.MethodsThis study will be executed in two phases:1) Development of the CPOT-Fam — A working group of patient partners, ICU clinicians, and researchers will adapt the CPOT for use by family caregivers (creating the CPOT-Fam) and produce an accompanying educational module to deliver information on pain and how to use the tool. The CPOT-Fam will undergo preclinical testing with participants (i.e., members of the public and family caregivers of critically ill adults), who will complete the educational module and provide CPOT-Fam scores on sample cases. Feedback on the CPOT-Fam will be collected.2) Pilot testing the CPOT — Fam family caregivers of critically ill adults will complete the educational module and provide information on the following: (1) demographics, (2) anxiety, (3) caregiving self-efficacy, and (4) satisfaction with care in the ICU. Family caregivers will then provide a proxy assessment of their critically ill loved one’s pain through the CPOT-Fam and also provide a subjective (i.e., questionnaire-based including open-ended responses) account of their loved one’s pain status. A comparison (i.e., agreement) will be made between family caregiver provided CPOT-Fam scores and ICU nurse-provided CPOT scores (collected from the provincial health information system), calculated independently and blinded to one another. Feasibility and acceptability of the CPOT-Fam will be determined.DiscussionThe results of this work will produce a family caregiver CPOT (i.e., CPOT-Fam), determine feasibility and acceptability of the CPOT-Fam, and compare pain assessments conducted by family caregivers and ICU nurses. The results will inform whether a larger study to determine a role for family caregivers in ICU pain assessment using the CPOT-Fam is warranted.

Promoting interactive skills and mind-mindedness among early childcare professionals: study protocol for a randomized wait-list controlled trial comparing the Circle of Security approach with care as usual in center-based childcare (the SECURE project)

BackgroundIn countries where the majority of young children are enrolled in professional childcare, the childcare setting constitutes an important part of children’s caregiving environment. Research consistently shows that particularly the quality of the daily interactions and relationship between young children and their professional caregivers have long-term effects on a range of developmental child outcomes. Therefore, professional caregivers’ capacity for establishing high quality interactions with the children in their care is an important target of intervention.MethodsA prospective, parallel, cluster-randomized wait-list controlled trial is used to test the efficacy of the attachment- and mentalization theory informed Circle of Security (COS) approach adapted to the childcare setting (COS-Classroom) on caregiver interactive skills and mind-mindedness. Participants are professional caregivers of children aged 0–2.9 years working in center-based childcare in Denmark. Approximately 31 childcare centers, corresponding to an estimated 113 caregivers, are expected to participate. The primary outcome is caregiver Sensitive responsiveness measured with the Caregiver Interactive Profile Scales (CIP-scales). Secondary outcomes include caregiver Mind-mindedness, the five remaining CIP-scales (Respect for autonomy, Structure and limit setting, Verbal communication, Developmental stimulation, and Fostering positive peer interactions), and caregivers’ resources to cope with work-related stress. Data on structural factors (e.g., staff stability, caregiver-child ratio, and level of pre-service education), caregiver attachment style, acceptability and feasibility of the COS-C together with qualitative data on how the participants experience the COS-C is additionally collected to investigate moderating and confounding effects.DiscussionExamining the effectiveness of the COS-C in center-based childcare contributes to the knowledge of evidence-based intervention programs and can potentially improve the caregiver quality early childcare.Trial registration: ClinicalTrials.gov: NCT04654533. Prospectively registered December 4, 2020, https://clinicaltrials.gov/ct2/show/NCT04654533.

Acceptance Theory of Family Caregiving.

Acceptance of roles in the care of older adults by a family caregiver depends on factors emanating from commitment to familial relationships, widespread cultural expectation, and debt of gratitude. This study aims to develop a theory that explains the acceptance of the role of caregiving of the older adults by the family caregiver necessary to predict behavioral adaptation and control caring phenomenon that favors successful meeting of caring expectation across trajectory phases and transitions. A deductive axiomatic approach to theory generation was utilized, resulting in four axioms that served as bases for four propositions. Acceptance Theory of Family Caregiving implies that older adults who expect their children to take care of them as they age have cultural influence and that the acceptance of the role will determine the caregiver's acceptance of consequences in the form of physical, economical, psychological, and spiritual aspects. In terms of preparedness, family members who accept the possibility of the decline of their older adults are more likely to be assume caregiving roles efficaciously. In the process that family members face in this so-called trajectory caregiving process, resources play a significant role. The developed theory suggests that the care of the older adult in the family caregiving process is determined by the acceptance of role assumption by the family caregiver across trajectory phases. This study highlights the vital implication of acceptance of role assumption to the outcomes of the caregiving process with respect to older adult care, prevention of family caregiver burden, and establishment of strong familial and social relationships.

Assessing Caregiver Acceptability and Perceived Barriers to Peanut Oral Immunotherapy (OIT) in the General Food Allergic Pediatric Population

In January 2020, the FDA approved the first food allergy (FA) oral immunotherapy (OIT) product that reduces the incidence and severity of allergic reactions to peanut in children aged 4-17 years. Though an important advancement, OIT may increase a family’s burden. Little is known about why caregivers may seek treatment, and previously sampled groups largely included well-resourced, motivated families participating in research trials. This study sought to evaluate the motivations for pursuing OIT in a more diverse community population.

Effects of Acceptance and Commitment Therapy (ACT) on Mental Health and Resiliency of Migrant Live-in Caregivers in Canada: Pilot Randomized Wait List Controlled Trial.

BackgroundTemporary migrant live-in caregivers constitute a vulnerable stream of temporary foreign workers in Canada. This is because the majority are racialized women from the Global South, the gendered nature of caregiving work has historically been undervalued, and their working and living spheres are intertwined which makes application of labor laws and surveillance almost impossible. Their invisible position in the fabric of Canadian society along with their precarious employment and immigration status place their mental health at jeopardy. There is a paucity of research about psychological support for this population.ObjectiveOur pilot study Women Empowerment—Caregiver Acceptance and Resilience E-Learning (WE2CARE) aimed to assess the efficacy of a 6-week online delivery of a psychological intervention based on acceptance and commitment therapy (ACT) in reducing psychological distress and promoting resiliency among live-in care givers in the Greater Toronto Area.MethodsA pilot randomized wait list controlled design was used. Participants were recruited by two community peer champions working with community health organizations serving migrant live-in caregivers. A total of 36 participants were recruited and randomly assigned to the intervention and wait list control groups; 7 dropped out of the study due to competing life priorities. Standardized self-reported surveys were administered online pre-, post-, and 6-week postintervention to assess mental distress (DASS-21), psychological flexibility (AAQ-2), mindfulness (CAMS-R), and Multi-System Model of Resilience (MSMR-I). Independent and dependent t tests were used to compare study outcomes at pre, post, and 6-week follow-up across and within both arms of the study. Linear mixed effects models were created for each outcome of interest from baseline to postintervention among intervention and control participants. Self-reported impact of the WE2CARE intervention was examined using independent t tests across the study arms.ResultsAverage age of participants was 38 years. Many were born in the Philippines (23/29, 79%). The data on the impact of the psychological intervention showed a lower level of depression, anxiety, and stress among the intervention group compared with the control. However, the differences were not significant due to small sample size and COVID-19 crisis (6.94 vs 9.50, P=.54; 6.94 vs 10.83, P=.20; 7.76 vs 10.33, P=.44, respectively). There was a significant improvement in mindful qualities and external resilience, particularly in life satisfaction and accessible support among the intervention group (37.18 vs 32.92, t22=2.35, P=.03; 20.29 vs 16.5, t21=2.98, P=.007; 8.47 vs 6.75, t14=2.41, P=.03; 7.59 vs 5.33, t16=.008, respectively).ConclusionsWE2CARE is among the first studies exploring the efficacy of online delivery of ACT in addressing mental health challenges among live-in caregivers. While there are increased web-based ACT interventions, few use group videoconferencing to promote peer connection and mutual support. WE2CARE showed promising results in reducing psychological distress and promoting mindfulness and resiliency. The intervention highly motivated participants to engage collectively in building social support networks.International Registered Report Identifier (IRRID)RR2-10.2196/preprints.31211

A Socially Assistive Robot for Stroke Patients: Acceptance, Needs, and Concerns of Patients and Informal Caregivers.

Stroke patients often contend with long-term physical challenges that require treatment and support from both formal and informal caregivers. Socially Assistive Robots (SARs) can assist patients in their physical rehabilitation process and relieve some of the burden on the informal caregivers, such as spouses and family members. We collected and analyzed information from 23 participants (11 stroke patients and 12 informal caregivers) who participated in a total of six focus-group discussions. The participants responded to questions regarding using a SAR to promote physical exercises during the rehabilitation process: (a) the advantages and disadvantages of doing so; (b) specific needs that they wish a SAR would address; (c) patient-specific adaptations they would propose to include; and (d) concerns they had regarding the use of such technology in stroke rehabilitation. We found that the majority of the participants in both groups were interested in experiencing the use of a SAR for rehabilitation, in the clinic and at home. Both groups noted the advantage of having the constant presence of a motivating entity with whom they can practice their rehabilitative exercises. The patients noted how such a device can assist formal caregivers in managing their workload, while the informal caregivers indicated that such a system could ease their own workload and sense of burden. The main disadvantages that participants noted related to the robot not possessing human abilities, such as the ability to hold a conversation, to physically guide the patient's movements, and to express or understand emotions. We anticipate that the data collected in this study—input from the patients and their family members, including the similarities and differences between their points of view—will aid in improving the development of SARs for rehabilitation, so that they can better suit people who have had a stroke, and meet their individual needs.

The Relationship Between COVID 19 Anxiety and Dementia Caregivers Burden and Suffering

The impact of COVID-19 on dementia caregivers is gaining new interest. It is unknown how the pandemic has impacted caregivers’ burden and existential suffering. Analyses were performed on data for dementia caregivers (n=89) enrolled in the Indiana University Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) pilot trials. Individuals were primary caregivers of a family member with dementia and had clinically significant anxiety measured by a GAD-7 score >10 or between 5-9 with reported interference in life. COVID-19 anxiety was measured using the NIH CoRonavIruS Health Impact Survey (CRISIS) questions. Caregivers were on average 55.2 years of age with 56.2% being child or child-in-law, 71.9% were white and 24.7% were Black. Mean burden scores, measured by the Zarit Burden Index, were higher (44.29) compared to means reported across the literature (26.7) indicating the sample experienced higher than normal levels of burden. Mean existential suffering scores measured by the subscale of Experience of Suffering Scale were lower (9.37) compared to means across the literature (11.5) indicating that overall participants experienced lower levels of existential suffering compared to those in previous studies. A significant relationship was found between COVID-19 anxiety and burden levels (x2= 9.07, p<0.05), with higher levels of COVID-19 anxiety associated with greater burden. A non-significant relationship was found between COVID-19 anxiety and existential suffering (x2=5.99, p=0.11). Results highlight the impact of COVID-19 anxiety as an external stressor on dementia caregiving. and the importance of considering context of external stressors when implementing intervention protocols for caregivers of individuals with dementia.

The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Background/Objective: Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of other conditions. The primary objective of this analysis is to determine the relationship between caregiver anticipatory grief and dementia severity, as measured by the Anticipatory Grief Scale (AGS) and Dementia Severity Rating Scale (DSRS), respectively.&#x0D; Methods: Multiple regression analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) trial; an RCT testing an ACT intervention for ADRD caregiver anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient and clinically significant anxiety (GAD7 score &gt;10).&#x0D; Results: The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature. Multiple regression models showed a caregivers’ anticipatory grief is not significantly associated with the patients’ dementia severity as measured by the Dementia Severity Rating Scale (t=0.87). Results also revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (t=&lt; 0.1).&#x0D; Conclusion and Potential Impact: Understanding these relationships contributes to better understanding ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

Caregiver Acceptability of Mobile Phone Use for Pediatric Cancer Care in Tanzania: Cross-sectional Questionnaire Study.

BackgroundThere is a 60% survival gap between children diagnosed with cancer in low- and middle-income countries (LMICs) and those in high-income countries. Low caregiver knowledge about childhood cancer and its treatment results in presentation delays and subsequent treatment abandonment in LMICs. However, in-person education to improve caregiver knowledge can be challenging due to health worker shortages and inadequate training. Due to the rapid expansion of mobile phone use worldwide, mobile health (mHealth) technologies offer an alternative to delivering in-person education.ObjectiveThe aim of this study is to assess patterns of mobile phone ownership and use among Tanzanian caregivers of children diagnosed with cancer as well as their acceptability of an mHealth intervention for cancer education, patient communication, and care coordination.MethodsIn July 2017, caregivers of children <18 years diagnosed with cancer and receiving treatment at Bugando Medical Centre (BMC) were surveyed to determine mobile phone ownership, use patterns, technology literacy, and acceptability of mobile phone use for cancer education, patient communication, and care coordination. Descriptive statistics were generated from the survey data by using mean and SD values for continuous variables and percentages for binary or categorical variables.ResultsAll eligible caregivers consented to participate and completed the survey. Of the 40 caregivers who enrolled in the study, most used a mobile phone (n=34, 85%) and expressed high acceptability in using these devices to communicate with a health care provider regarding treatment support (n=39, 98%), receiving laboratory results (n=37, 93%), receiving reminders for upcoming appointments (n=38, 95%), and receiving educational information on cancer (n=35, 88%). Although only 9% (3/34) of mobile phone owners owned phones with smartphone capabilities, about 74% (25/34) self-reported they could view and read SMS text messages.ConclusionsTo our knowledge, this is the first study to assess patterns of mobile phone ownership and use among caregivers of children with cancer in Tanzania. The high rate of mobile phone ownership and caregiver acceptability for a mobile phone–based education and communication strategy suggests that a mobile phone–based intervention, particularly one that utilizes SMS technology, could be feasible in this setting.

Dementia Caregiver Experiences and Recommendations for Using the Behavioral and Environmental Sensing and Intervention System at Home: Usability and Acceptability Study

BackgroundCaregiver burden associated with dementia-related agitation is one of the most common reasons for a community-dwelling person living with dementia to transition to a care facility. The Behavioral and Environmental Sensing and Intervention (BESI) for the Dementia Caregiver Empowerment system uses sensing technology, smartwatches, tablets, and data analytics to detect and predict agitation in persons living with dementia and to provide just-in-time notifications and dyad-specific intervention recommendations to caregivers. The BESI system has shown that there is a valid relationship between dementia-related agitation and environmental factors and that caregivers prefer a home-based monitoring system.ObjectiveThe aim of this study is to obtain input from caregivers of persons living with dementia on the value, usability, and acceptability of the BESI system in the home setting and obtain their insights and recommendations for the next stage of system development.MethodsA descriptive qualitative design with thematic analysis was used to analyze 10 semistructured interviews with caregivers. The interviews comprised 16 questions, with an 80% (128/160) response rate.ResultsPostdeployment caregiver feedback about the BESI system and the overall experience were generally positive. Caregivers acknowledged the acceptability of the system by noting the ease of use and saw the system as a fit for them. Functionality issues such as timeliness in agitation notification and simplicity in the selection of agitation descriptors on the tablet interface were identified, and caregivers indicated a desire for more word options to describe agitation behaviors. Agitation intervention suggestions were well received by the caregivers, and the resulting decrease in the number and severity of agitation events helped confirm that the BESI system has good value and acceptability. Thematic analysis suggested several subjective experiences and yielded the themes of usefulness and helpfulness.ConclusionsThis study determined preferences for assessing caregiver strain and burden, explored caregiver acceptance of the technology system (in-home sensors, actigraph or smart watch technology, and tablet devices), discerned caregiver insights on the burden and stress of caring for persons living with dementia experiencing agitation in dementia, and solicited caregiver input and recommendations for system changes. The themes of usefulness and helpfulness support the use of caregiver knowledge and experience to inform further development of the technology.

Views on Using Social Robots in Professional Caregiving: Content Analysis of a Scenario Method Workshop.

BackgroundInterest in digital technologies in the health care sector is growing and can be a way to reduce the burden on professional caregivers while helping people to become more independent. Social robots are regarded as a special form of technology that can be usefully applied in professional caregiving with the potential to focus on interpersonal contact. While implementation is progressing slowly, a debate on the concepts and applications of social robots in future care is necessary.ObjectiveIn addition to existing studies with a focus on societal attitudes toward social robots, there is a need to understand the views of professional caregivers and patients. This study used desired future scenarios to collate the perspectives of experts and analyze the significance for developing the place of social robots in care.MethodsIn February 2020, an expert workshop was held with 88 participants (health professionals and educators; [PhD] students of medicine, health care, professional care, and technology; patient advocates; software developers; government representatives; and research fellows) from Austria, Germany, and Switzerland. Using the scenario methodology, the possibilities of analog professional care (Analog Care), fully robotic professional care (Robotic Care), teams of robots and professional caregivers (Deep Care), and professional caregivers supported by robots (Smart Care) were discussed. The scenarios were used as a stimulus for the development of ideas about future professional caregiving. The discussion was evaluated using qualitative content analysis.ResultsThe majority of the experts were in favor of care in which people are supported by technology (Deep Care) and developed similar scenarios with a focus on dignity-centeredness. The discussions then focused on the steps necessary for its implementation, highlighting a strong need for the development of eHealth competence in society, a change in the training of professional caregivers, and cross-sectoral concepts. The experts also saw user acceptance as crucial to the use of robotics. This involves the acceptance of both professional caregivers and care recipients.ConclusionsThe literature review and subsequent workshop revealed how decision-making about the value of social robots depends on personal characteristics related to experience and values. There is therefore a strong need to recognize individual perspectives of care before social robots become an integrated part of care in the future.

Adverse Childhood Experiences and Healthcare Utilization of Children in Pediatric Emergency Departments

To determine the prevalence of adverse childhood experiences (ACEs) and healthcare utilization patterns of children seen in pediatric emergency departments (PEDs). In this cross-sectional study, caregivers of patients who presented to 2 urban PEDs completed a survey regarding their children's ACEs, health care utilization patterns, and acceptance of PED-based ACEs screening and resources. Inclusion criteria were English-speaking caregivers of patients 0-17years of age not requiring acute stabilization. Prevalence estimates were compared with national and state data from the National Survey of Children's Health by calculating risk differences and 95% CIs. The association of cumulative ACEs with caregiver-reported health care utilization patterns was evaluated using ORs. Among 1000 participants, 28.1% (95% CI 25.3-30.9) had 1 ACE; 17.8% (95% CI15.4-20.2) had ≥2 ACEs. Notably, children with higher cumulative ACEs were seen in the PED more frequently (0, 1, ≥2 visits) (OR 1.18, 95% CI 1.06-1.30, P=.002) and more likely to seek care in PEDs for sick visits (OR 1.16, 95% CI 1.04-1.30, P=.01). About 9% of children exposed to ACEs did not have a primary care provider. Over 85% of caregivers reported never discussing ACEs with their primary care provider. Most caregivers felt comfortable addressing ACEs in PEDs (84.4%) and would use referral resources (90.4%). Given higher PED utilization in children with more ACEs and caregiver acceptance of PED-based screening and intervention, PEDs may represent a strategic and opportune setting to both assess and respond to ACEs among vulnerable populations.

Implementation of an Internet-Based Acceptance and Commitment Therapy for Promoting Mental Health Among Migrant Live-in Caregivers in Canada: Protocol.

BackgroundPsychological distress, isolation, feelings of powerlessness, and limited social support are realities faced by temporary migrant live-in caregivers in Canada. Furthermore, they experience multiple barriers in accessing mental health services due to their long work hours, limited knowledge of health resources, precarious employment, and immigration status.ObjectiveThe Women Empowerment - Caregiver Acceptance & Resilience E-Learning (WE2CARE) project is a pilot intervention research project that aims to promote the mental well-being and resiliency of migrant live-in caregivers. The objectives include exploring the effectiveness of this program in achieving the following: (1) reducing psychological distress (depression, anxiety, and stress); (2) promoting committed actions of self-care; and (3) building mutual support social networks. Further, participants’ satisfaction with the intervention and their perceived barriers to and facilitators of practicing the self-care strategies embedded in WE2CARE will be examined.MethodsA total of 36 live-in caregivers residing in the Greater Toronto Area will be recruited and randomly assigned to either the intervention or waitlist control group. The intervention group will receive a 6-week web-based psychosocial intervention that will be based on Acceptance and Commitment Therapy (ACT). Standardized self-reported surveys will be administered online preintervention, postintervention, and at 6 weeks postintervention to assess mental distress (Depression, Anxiety and Stress Scale), psychological flexibility (Acceptance and Action Questionnaire), mindfulness (Cognitive and Affective Mindfulness Scale – Revised), and resilience (Multi-System Model of Resilience Inventory). In addition, two focus groups will be held with a subset of participants to explore their feedback on the utility of the WE2CARE program.ResultsWE2CARE was funded in January 2019 for a year. The protocol was approved by the research ethics boards of Ryerson University (REB 2019-036) and the University of Toronto (RIS37623) in February and May 2019, respectively. Data collection started upon ethics approval and was completed by May 2020. A total of 29 caregivers completed the study and 20 participated in the focus groups. Data analyses are in progress and results will be published in 2021.ConclusionsWE2CARE could be a promising approach to reducing stress, promoting resilience, and providing a virtual space for peer emotional support and collaborative learning among socially isolated and marginalized women. The results of this pilot study will inform the adaptation of an ACT-based psychological intervention for online delivery and determine its utility in promoting mental health among disadvantaged and vulnerable populations.International Registered Report Identifier (IRRID)DERR1-10.2196/31211

Perceptions of expressed breast milk for preterm infants in Malawian hospitals: A qualitative study

BackgroundExpressed breastmilk (EBM) can support lactation for mothers of preterm infants with underdeveloped feeding skills. However, there may be implementation challenges in resource-limited global health settings. ObjectiveTo explore EBM barriers and facilitators perceived by caregivers and healthcare workers in Malawi. MethodsA secondary analysis of in-depth interviews exploring breastfeeding support at health facilities conducted at three secondary-level district hospitals and one tertiary-level central hospital in southern Malawi. Interviews underwent content analysis in NVivo 12 (QSR International, Melbourne, Australia). ResultsThere were 58 healthcare workers and 54 caregivers interviewed. Caregiver unfamiliarity, maternal exhaustion, and inadequate clinical support/equipment were barriers to EBM practice. Caregiver acceptance was supported by witnessing infant growth. Demonstrations of EBM by healthcare workers and family support also facilitated practice. ConclusionRaising community awareness and extending counselling to family members upon initiation are vital to supporting mothers practice EBM in resource-limited global health settings with chronic staffing shortages.