Caregiver Training Research Articles

Identifying and caring for minors who have been victims of incest in a pediatric unit for children at risk (Uaped)

The paediatric reception unit for children at risk plays an active role in raising awareness and training caregivers in the region, to facilitate the identification and care of children who are victims of sexual violence within the family (incest), within the hospital where it is based, and through its close links with child protection agencies. The nursery nurse is an essential member of this team, with her in-depth knowledge of children and their development from 0 to 18 years of age.

Preventing deformities in paediatric cerebral palsy in poorly-resourced areas: A scoping review

Background: Managing children with cerebral palsy (CP) in poorly-resourced contexts, especially those with greater functional limitations, is challenging. Unmitigated orthopaedic complications can further restrict already compromised functional capacity. Where rehabilitation skills and knowledge are scarce, primary healthcare worker- and caregiver-implemented routines are warranted. The essential elements of a home-based routine to mitigate musculoskeletal (MSK) complications in children with severe CP in resource-limited settings (RLSs) have not been determined.Objectives: To summarise the evidence for programmes and interventions that mitigate MSK complications in children with severe CP and make recommendations for a programme suited to RLSs.Method: Scientific databases and professional websites were searched for studies and reports describing guidelines, interventions or programmes for children aged 0–18 years with severe, partially- or non-ambulant CP, that included aims for the prevention of MSK complications. Articles reporting on surgical, pharmacological and advanced or expensive technological interventions were excluded.Results: A total of 57 studies or reports were included in the review. Low-grade evidence exists for 24-hour postural management (24-h PM), supported standing, sustained stretching and splinting to mitigate MSK complications in children with CP. Caregiver training and support, and integration of the programme into daily routines were identified as important components for successful implementation.Conclusion: Clinical guidelines and evidence that support caregiver-delivered interventions to reduce MSK complications in children with severe CP are limited, and only weak recommendations can be made.Clinical implications: There is a need for context-specific, home-based intervention programmes to prevent MSK complications in children with CP in RLSs.

Caregivers’ Mastery in Handling Gastrostomy at Home after Educational Intervention: Qualitative Descriptive Study

Background: Effective hospital discharge planning is crucial, particularly in educating caregivers on handling medical devices. This education helps manage the patient’s signs and symptoms, prevents post-discharge complications, and reduces early readmissions. This study aimed to understand aspects involved in the acquisition of mastery by home caregivers, in handling care of a patient who just underwent gastrostomy, after educational intervention during hospitalization and telemonitoring upon return home. Methods: Qualitative descriptive study. It followed 15 caregivers of people with percutaneous endoscopic gastrostomy. The intervention took place between November 2022 and July 2023 in the neuromusculoskeletal unit of a Brazilian university hospital. Results: The educational intervention had four stages. In stage 1, caregivers felt confused and uncertain about managing PEG. By stage 2, they expressed a desire to be capable of handling care, especially in the event of potential complications, and showed increased awareness and engagement. Stage 3 highlighted the effectiveness of hands-on training with feedback from professionals. In stage 4, during monitoring, several complications were noted, including granuloma formation in the stoma, tube obstruction, and accidental tube loss. However, caregivers demonstrated the ability to handle these situations, indicating the effectiveness of the training and telemonitoring interventions. Conclusions: Nursing professionals should consider various factors when training caregivers in a hospital setting, including providing adequate space, allocating sufficient time for educational interventions, offering both theoretical and practical demonstrations, ensuring effective communication, and taking into account the caregivers’ context, as they play a direct role in acquiring a safe and effective skill set.

Telepractice-delivered communication training for informal caregivers of people with aphasia: A pilot study

Purpose To establish proof of concept of a student-led, telepractice-delivered communication partner training towards enhancing communication between people with aphasia and their informal caregivers in everyday conversations. Method Two dyads were recruited, each consisting of a person with aphasia and their caregiver. A pre-training questionnaire was completed by caregivers, followed by a weekly communication training session delivered by graduate student clinicians via telepractice to each dyad over 12 weeks. The caregivers then completed a post-training questionnaire. Both questionnaires included 13 Likert-scale questions and one open-ended question requiring an extended response. Result Pre- to post-training improvements for both dyads were identified on two domains of the questionnaire: (a) frustrations of the caregiver and person with aphasia and (b) caregivers’ knowledge and confidence in using communication strategies. This quantitative data was supported by additional extended responses regarding informal caregivers’ current communication strategies when communicating with the person with aphasia. Conclusion Both informal caregivers reported integrating communication strategies learned as part of the training in their interactions with the person with aphasia and experiencing fewer communication breakdowns during the two weeks following the training. The pilot study offers proof of concept for incorporating telepractice-delivered caregiver communication training as part of aphasia rehabilitation.

Persepsi Pengasuh dalam Pola Asuh dan Pemberian Makan pada Anak dengan Cerebral Palsy

Cerebral palsy (CP) is a neurological disorder that affects a child's motor skills and motor skills, which often causes difficulties in parenting and feeding. This study aims to explore the perception of caregivers related to parenting and feeding in children with CP at the Jakarta Disabled Children Development Foundation (YPAC). The research uses a qualitative method with in-depth interviews with caregivers and educators at YPAC. The results of the study show that caregivers tend to apply a responsive parenting style aimed at increasing children's independence, although this process takes a long time. In feeding, caregivers face challenges such as food rejection, physical limitations in chewing and swallowing, and proper feeding positioning. In conclusion, caregiver support plays a very important role in improving the quality of life of CP children, both in terms of independence and proper nutritional intake. Training and support for caregivers is important to deal with these challenges more effectively.

Fire at Sea: A 70-year Review of Fire-Related Mass Casualty Events on U.S. Aircraft Carriers.

A major fire at sea is among the most devastating events that can occur while a U.S. Navy combatant vessel is underway. Since World War II, no attack on a large U.S. Navy capital ship has occurred during combat operations. However, increasing global tensions raise the threat of future peer adversary naval combat, and shipboard medical caregivers must be prepared for mass casualty events in the deployed maritime environment. To better prepare modern naval caregivers for this possibility, we reviewed mass casualty events from major fires aboard large U.S. Navy aircraft carriers from 1950 through 2020 to summarize available objective data and identify lessons learned. Underway fires from any cause aboard U.S. Navy aircraft carriers and large amphibious assault ships causing more than 10 casualties (injuries + deaths) were reviewed from 1950 through 2020 using available open access sources including literature review, the Naval Safety Command mishap database, and U.S. Navy Judge Advocate Manual reports. Of 246 fires identified, 27 met inclusion criteria resulting in 1,634 casualties with a combined crew mortality of 23% of those injured. In the 16 events with at least 1 death, 2.0% of the total crew was injured with a combined mortality of 28%. All mishaps occurred while underway during routine training or combat operations; none were caused by an enemy combatant attack. Those events affecting more than 5% of the crew were particularly devastating resulting in a mortality rate of 29% of 1,056 total casualties. Given that main medical spaces may be damaged or destroyed during major fires from any cause, identified lessons learned included the need for (1) distributed medical supplies, (2) flexible medical treatment locations throughout the ship, (3) specific training to prepare non-physician caregivers and non-medical first responders to provide burn and hemorrhagic shock resuscitation, airway management, and prolonged care at or near the point of injury, and (4) the prolonged holding capability of critically ill burned and injured patients if evacuation off the ships is unavailable. Shipboard fires underway pose a significant threat to crew safety with a mortality of nearly a quarter of those injured. These fire mass casualty events immediately overwhelm shipboard medical capabilities requiring a complex response from all hands beginning with non-medical first responders. Notably, all events occurred outside of direct enemy combat, potentially underestimating the impact and number of casualties of a shipboard fire during naval combat. Advances in peer weaponry and the threat of future conflict emphasize the need for pre-deployment burn care training for all shipboard medical caregivers as well as advanced airway and resuscitation training for non-physician caregivers. This review underscores the profound impact of shipboard fires on crew safety, highlighting the critical need for enhanced preparedness and response strategies to prepare for fire-related mishaps during routine operations and naval combat.

Smartphone Magnetometers for Assessing Programmable Shunt Valve Settings: A Proof-of-Concept Study.

Programmable shunt valves (PSVs) used to treat hydrocephalus require specialized valve-specific devices that determine their setting. However, these devices are typically only accessible in major medical centers. This study explores the feasibility of using smartphone magnetometers to assess PSV settings. We investigated 2 PSVs, the Codman Certas Plus and Medtronic Strata II, using 3 different smartphones. Free open-source software was used to measure magnetic flux densities of the shunts, and PSV-specific algorithms were developed to interpret these measurements. All measurements were performed ex vivo. We demonstrated that this method could accurately determine PSV settings with 100% accuracy in ex vivo blinded trials. The technique was effective even with a scalp analog simulating different skin thicknesses. This proof-of-concept study suggests that smartphones can be used for PSV assessment. However, further development and validation are needed to refine this method for clinical use. This technology could enhance PSV management accessibility, allowing for remote or at-home evaluations by trained individuals or caregivers, thus improving patient care in underserved areas.

Child's Externalizing and Internalizing Problems and Caregiver Strain: Mediation of Child's Executive Functions.

The aim of the study is to explore the role of child's executive functions in the relation between child's externalizing and internalizing problems and caregiver strain in early school age children. The caregiver strain refers to providing nurture and care for a dependent family member. A sample includes 175 caregiver-child dyads and 36 school teachers. Participants completed the Family Strain Index which measures caregiver strain or burden (caregivers), the Strengths and Difficulties Questionnaire which measures child's externalizing and internalizing problems (teachers), and behavioral tasks that measure executive functions (children). Using structural equation modelling, the analysis resulted in a full mediation of the child's externalizing problems on the caregiver strain by child's executive functions. However, the association of child's internalizing problems with caregiver strain has not been confirmed. These results indicate that better child's executive functions buffer the negative effect of child's externalizing problems on caregiver perceived burden. Based on these results, we can suggest that interventions should be focused on programmes to improve the child's executive functions in the family and educational context, along with caregiver training aimed at providing emotional and social support, or individual therapy.

Bipolar Disorder and Suicide

Suicide is a dramatic and frequent consequence of bipolar disorder. Prevention of suicidal behavior involves an assessment of suicidal vulnerability factors (history of suicidal behavior, impulsive personality, etc.), characteristics of depression (agitated depression, a subtype of bipolar disorder, etc.), psychiatric comorbidities, and stress factors. Psychosocial at the same time with the characteristics of suicidal behavior in a depressed subject (severe or repeated gestures in particular) make it possible to direct the diagnosis towards a bipolar disorder rather than a major depressive disorder. In addition to training caregivers to screen for bipolar disorder and assess suicidal behavior, the withdrawal of lethal means, networking, and treatment of depression reduce the risk of suicidal behavior. At the medicinal level, the use of lithium salts could be of particular interest in subjects at high risk of suicide.

Cost-Effectiveness Analysis of Telehealth and In-Person Primary Care Visits for People Living with Alzheimer’s Disease-Related Disorders in the State of Nevada

To people living with Alzheimer’s Disease-Related Disorders (ADRD), timely and coordinated communication is essential between their informal caregivers and healthcare providers. In provider shortage areas, for example, the state of Nevada, telehealth can be an effective primary care delivery alternative to in-person visits. To evaluate the cost-effectiveness of telehealth visits for people living with ADRD in the state of Nevada, a decision-analytic Markov model was developed from healthcare system perspectives with a 10-year horizon/1-year cycle. To estimate the effects of demographic and geographic parameters on the Markov model, race parameters were divided into non-Hispanic White individuals vs. others and location parameters were divided into urban vs. rural. A 12-item short-version Zarit Burden Interview (ZBI-12) was applied to measure the informal caregiver burdens of non-institutionalized people living with ADRD. The values of mortality rate and healthcare utilization were obtained from healthcare systems’ publicly available payor administrative data and Nevada State Inpatient/Emergency Department datasets. Among urban-residing non-Hispanic White individuals, the Incremental Cost-Effectiveness Ratio (ICER) per modified ZBI-12 indicated a cost saving of USD 9.44 with telehealth visits; among urban-residing racial minorities, the ICER per modified ZBI-12 indicated a cost saving of USD 29.26 with in-person visits; and among rural residents, the ICER per modified ZBI-12 indicated a cost-saving of USD 320.93 with telehealth visits. Distributional differences in the cost-saving effects of telehealth primary care were noted in line with racial and geographic parameters. Workforce and caregiver training is necessary for reducing distributional differences, especially among urban-residing racial monitories living with ADRD in the provider shortage area of the state of Nevada.

The impact of caregiver training on the oral health of people with disabilities: A systematic review.

This systematic review aimed to assess the impact of oral health training for caregivers of individuals with disabilities. A systematic review was conducted using five electronic databases: Medline (PubMed), SciELO, Web of Science, LILACS, and CAFe, adhering to PRISMA guidelines. The PICO strategy was defined as follows: Participants:caregivers of individuals with disabilities; Intervention:training or education in oral health for caregivers;Control:no caregiver training; andOutcomes:evaluating whether oral health training for caregivers improves the oral health of people with disabilities. The study aimed to address the research question: "What is the impact of oral health training for caregivers of individuals with disabilities?" The study was preregistered in PROSPERO (CRD42023416760). A total of 14 studies were included, with trained caregivers being either staff members or parents, and various disabilities reported, with cerebral palsy being the most prevalent. Caregiver training methods varied, such as instructions on the importance of oral health care, supervised oral hygiene, and demonstration of toothbrushing techniques. Overall, the intervention groups showed an improvement in measures such as to the Gingival Index, Plaque Index, Simplified Oral Hygiene Index, and Gingival Bleeding Index on upon probing. Additionally, improvements were observed in the quality, frequency, and duration of toothbrushing among intervention groups. The findings suggest that oral health training for caregivers has a positive impact on the oral health of individuals with disabilities, potentially leading to better oral health outcomes.

Symptom management for people with advanced dementia who are receiving end of life care.

This review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings. Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support. Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia.

PENDAMPINGAN SOCIAL BEHAVIOUR TERAPHY DAN CLASSICAL CONDITIONING TERAPHY PADA KOMUNITAS PEDULI ANAK AUTIS

The purpose of this service is to provide support and assistance to children with autism through the implementation of Social Behavior Therapy and Classical Conditioning Therapy. The methods used in implementing this service involve counseling based on counseling service cards, seminars, workshops, and pre-tests and post-tests to measure the effectiveness of the program. The results of the service showed that 85% of parents and caregivers were satisfied with the program, and there was a significant increase in the social skills and adaptive behavior of children with autism. The sustainability of this program is supported by intensive training for caregivers and parents, which ensures consistent application of therapy. This program is expected to be a model for other communities in implementing behavioral therapy for children with autism, creating a more supportive and inclusive environment for them in the future.

Role of caregivers being trained in assisting in end of life care - Latin American perspective.

Palliative care in Latin America is evolving, but training for informal caregivers remains underexplored. This review summarizes recent interventions to educate or train caregivers in end-of-life care. The literature search identified three interventions published by 2023, two with reception evaluations, all with small sample sizes and no control groups. Needs of caregivers have been more frequently described and include training on aspects of the disease, nursing skills, how to handle patients´ and own emotions; help in navigating the complex healthcare systems in Latin America; help in conversations about the end of life and dying, still taboos in the region; help in finding additional caregivers or other types of support to make the caregiving role sustainable over time for the caregiver. Interventions mainly focused on emotional support and identifying additional caregivers without guilt; two included nursing skills training. There are very few formal interventions described and evaluated to assist caregivers in end-of-life care in Latin America described in the literature. This illustrates the rather invisible but very important role of these important stakeholders in the care for patients. Multidimensional interventions should be developed and evaluated to support caregivers.

Blinatumomab infusion interruptions in pediatric patients rarely lead to readmission.

Blinatumomab is a bispecific T-cell engager administered as a 28-day continuous infusion. Infusions can be associated with interruptions requiring support from clinical staff, but the frequency of interventions with outpatient blinatumomab has not been characterized. This study is a single-center, retrospective review of patients who received blinatumomab between December 3, 2014 and October 31, 2021 to determine frequency and type of interventions. Forty patients received blinatumomab for 69 cycles. Clinical staff intervention was required in 31 (45%) cycles, only six (8.7%) cycles needed readmission. Management of outpatient blinatumomab infusions requires education and training of clinical staff and caregivers to quickly troubleshoot interruptions.

Accessibility of and Barriers to Long-Term Follow-Up Care for Childhood Cancer Survivors

Childhood cancer survivorship programs and long-term follow-up (LTFU) practices are inadequate in most regions of China. To understand the clinician and caregiver perceptions of LTFU care and to identify barriers to adherence to LTFU care in mainland China. This survey study had a 2-phase sequential mixed-methods approach, consisting of a cross-sectional survey followed by semistructured interviews. Participants included oncology clinicians recruited through an educational seminar on LTFU and caregivers recruited through convenience sampling. Data were collected from November 2022 to September 2023. The clinician survey and interview focused on the standards and resources for LTFU care at their practicing institution and barriers to the coordination of LTFU care. For caregivers, the survey and interview focused on their awareness of and participation in LTFU care and their opinions on future LTFU care visits. A total of 101 clinicians (28 [27.7%] male; 73 [72.3%] female; 46 [45.6%] aged >40 to 50 years) completed the survey (response rate: 90.2%) representing 32 institutions from 22 provinces. As for the caregivers' survey, 164 eligible participants (36 [22.0%] male; 128 [78.0%] female) were recruited (response rate: 20.2%). The majority of the caregivers had received a high school or greater education (96 [56.7%]) and were parents of CCSs diagnosed with leukemia (67 [40.9%]), lymphoma or solid tumors (47 [28.7%]), or conditions requiring hematopoietic stem cell transplantation (50 [30.5%]). Most clinicians (74 [73.3%]) reported providing late effects care, yet only 10 (13.5%) had a dedicated follow-up clinic for CCSs. Two-thirds (64 [63.4%]) reported that the LTFU plan for each survivor is solely determined by their clinical judgment. In structured interviews, all doctors admitted to deviating from published guidelines due to challenges in implementing screening recommendations in their settings. Barriers to providing LTFU services included patient-related factors (76 [75.2%]), survivor knowledge deficits (61 [60.4%]), and the absence of dedicated LTFU clinics (61 [60.4%]). Among caregivers responding to the survey, 60 (36.6%) had never heard of late effects. Overall, 22 of 26 caregivers (84.6%) who participated in the interviews were not aware of potential late effects, although 17 (68.0%) could articulate existing conditions and symptoms that their children were experiencing. In this mixed-methods study involving clinicians and caregivers, substantial disparities in the uniformity and accessibility of LTFU in China were observed, suggesting the imperative need for a standardized approach to LTFU care for survivors. This includes advocating for establishment of dedicated clinics, alongside an emphasis on enhanced education and training for both clinicians and caregivers.

Caring for Carers: Association between Care-giving and Quality of Life of Family Carers of Spinal Cord Injury Survivors in Pakistan

Caring for someone with a spinal cord injury (SCI) has always been a family endeavor in developed as well as developing countries like Pakistan. Majority of people with SCI need assistance of others to carry out daily life activities i.e., eating, self-care, transportation and this functional dependence of patients on their attendant affect Quality of Life (QOL) of caregivers. Present study was designed to find the relationship between caregiver burden, psychosocial factors and QOL among caregivers. Caregiver Burden Inventory-SCI and WHOQOL was used to measure study variables. Cross-sectional research design having purposive sampling technique was used to gather data from spinal units of various hospitals of Pakistan. Sample size includes N= 255 family caregivers of SCI patients. Correlation analyses were applied to find the relationship between psychosocial factors, caregiver burden and QOL. Results showed that caregiver burden was significantly negatively correlated with quality of life and positively correlated with care-giving hours, duration of injury, and number of helpers involved in care-giving process. Furthermore, female caregivers showed high level caregiver burden and low levels of quality of life as compared to male counterparts. Similarly, married persons scored higher on caregiver burden and whose patients had paraplegic nature of injury. In Pakistan, there are no respite care programs for carers, The abovementioned findings are helpful in planning psychotherapeutic interventions and tailored caregiver training programs to lessen the impact of caregiver burden on caregivers and to boost their quality of life.

Challenges experienced by caregivers working in institutions for children. A case of four children’s homes in Zimbabwe

ABSTRACT Institutional care is one of the child care strategies used to provide secure family environments to children at risk. In this vein, institutions provide care through caregivers who look after children round the clock. These caregivers are trained and expected to provide high-quality services. However, in so doing, the caregivers face several challenges. This paper is based on a qualitative study that collected data from 24 caregivers working at four childcare institutions in Harare, Zimbabwe. The study employed a multiple case study design that was embedded in a phenomenological design. Findings from the study revealed that challenges experienced by caregivers include high caseloads and lack of resources, regulations which do not promote proper child development, inadequate training for caregivers, and nonexistence of a representative body for caregivers and the existence of multiple reporting systems for children. Noteworthy, is the fact that these challenges result in the provision of inappropriate services to children in institutions culminating in dilution of quality-of-care services’ provision to children. To this end, the author suggests a redress of caregivers’ roles and revision of institutional care framework; to address the challenges faced by caregivers.

Pilot Feasibility Study of an Individualized Cognitive Rehabilitation Program in Mexican Adults with Mild Dementia

Introduction. Dementia is a global public health problem, for which there is currently no cure. The increasing number of non-pharmacological interventions for the management of dementia challenges us to provide evidence-based care. Objective. To evaluate the feasibility of an individualized, cognitive rehabilitation program based on the French ETNA3 trial in Mexican subjects over fifty-five with mild Alzheimer's dementia and their caregivers who live in the community. Method. Non-randomized feasibility study. The intervention consisted of a twelve-month cognitive rehabilitation program, divided into eighteen ninety-minute sessions, administered by trained psychologists, and standardized according to the French ETNA3 program. To assess its feasibility, we determined the percentage of eligibility, acceptability, retention, and compliance and evaluated the adverse effects and degree of satisfaction in patients and their caregivers. Results. Thirty-two people with dementia and their caregivers agreed to participate. The mean age of the participants was 80 ± 8 years, the majority (72%) were women, and 78% had had five or more years of schooling. At twelve months, twenty-eight subjects (87%) completed the program with 100% compliance with the scheduled sessions. Discussion. This study shows the feasibility of an individualized cognitive rehabilitation program based on ETNA3 for Mexican subjects with mild dementia and their caregivers. Conclusion. More studies are required to evaluate the importance of trained therapists and caregiver support in achieving significant cognitive and functional changes in patients.

The Effect of Simulation-Based Training on the Hand Hygiene Knowledge and Practices of Palliative Caregivers:A Double-Blind, Randomized, Controlled Single-Center Study.

This study aimed to investigate the effect of simulation-based training on hand hygiene knowledge and practices among palliative caregivers. The study was conducted with 60 caregivers in a palliative care clinic between December 2022 and September 2023. The participants were divided into two groups by simple randomization. The intervention and control groups received the same hand hygiene theoretical education and demonstration. The intervention group also received additional simulation-based hand hygiene practices recommended by the World Health Organization. A pretest-posttest design was used to assess hand hygiene knowledge and practices. Data were collected with personal information, hand hygiene knowledge, and hand hygiene practice forms. Analysis of covariance was performed to compare posttest scores between the groups. Simulation-based hand hygiene training programs offer an effective and feasible strategy to improve the hand hygiene knowledge and practices of caregivers. It should be integrated into clinical areas to increase palliative caregivers' hand hygiene knowledge and practices. Evidence-based practices can be improved by increasing randomized controlled studies on the effectiveness of simulation-based hand hygiene training for caregivers. Trial Registration: The study was registered at ClinicalTrials.gov with registration number NCT05848596.