Concern For Caregivers Research Articles

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.

Enhancing parental knowledge of childhood and adolescence safety: An interventional educational campaign.

Background:Safeguarding children and adolescents from unintentional injuries is a significant concern for parents and caregivers. With them staying more at home during the coronavirus disease 2019 pandemic, more educational tools and valid educational programs are warranted to improve parental knowledge and awareness about childhood and adolescences’ safety. This study aims to explore the effectiveness of childhood and adolescence safety campaigns on parents’ knowledge and attitude toward preventable injuries.Methods:This was a pre–post experimental study, in which the predesigned assessments were used as an evaluation tool before and after attending a childhood and adolescence safety campaign. The pre–post assessment question included questions to evaluate the socio-demographic status, followed by knowledge questions in line with the current childhood and adolescence safety campaign. The outcomes of interest were assessed before and after attending the campaign's stations.Results:Three hundred eight parents volunteered to participate in this study. Their knowledge score improved from 36.2 [standard deviation (SD) 17.7] to 79.3 (SD 15.6) after attending the Campaign (t value = 34.6, P < .001). Both, perceptions on the preventability of accidents and the parents’ perceived usefulness of educational campaigns showed improvements, with (t value = 6.3, P < .001) and (t value = 3.097, P < .001), respectively.Conclusion:The educational childhood and adolescence safety campaign for caregivers in Saudi Arabia resulted in a significant increase in the overall knowledge and attitudes toward childhood and adolescence's safety. As children and adolescents are currently staying at home more, additional educational tools and programs are warranted to promote safe practices among parents and caregivers.

Perceptions of Postpartum Mothers of Their Experiences as a Patient During COVID-19 Crisis: A Phenomenological Study.

Coronavirus disease-2019 (COVID-19) pandemic led to drastic changes in in-hospital healthcare delivery causing major policy and protocol changes regarding labor and delivery and postpartum care of maternity patients. We strove to describe and understand the perceptions of laboring and postpartum mothers' care received through interviews in a hospital during the COVID-19 pandemic. Using a phenomenological study design, we interviewed 13 postpartum mothers. Five major themes and 10 subthemes were extracted. Major themes, both positive and negative, included genuine concern of caregivers, adverse breastfeeding experiences, feeling of being left alone, loss of expectations, and uncertainty. Primipara women had a major impact on their psychological well-being and breastfeeding experiences. Isolation and feelings of left alone adversely affect postpartum mothers' coping, newborn care, bonding, meeting basic needs of sleep and hygiene, breastfeeding experiences, and potential postpartum recovery and psychosocial well-being including fear of future pregnancies. Therefore, "partner presence" throughout the labor and delivery and postpartum period should be a "call to action" for the nurses, especially with first-time mothers.

The Context of Caring and Concern for Falling Differentiate Which Mobile Fall Technology Features Chinese Family Caregivers Find Most Important.

Falls are not only a leading cause of death and disability, but also a strain on the capacity for caregivers to provide care. This study examined how the context of caregiving relates to the importance of caregiver-defined mobile fall prevention feature sets. A sample of 266 family caregivers, recruited from a Chinese social media platform, reported care for an older adult and interest in mobile fall prevention technology features. Factor analysis identified three caregiver-defined feature sets: automatic fall response, digitized fall prevention tools, and social features. Multiple regression showed caregivers' concern about falling was the most robust predictor of a feature set's importance. Poisson regression revealed that caregiver concern and assistance with instrumental activities of daily living were associated with rating more features as important. Our findings suggest that caregivers are interested in mobile fall prevention technologies that support older adults' independence while also alleviating concerns about falling.

Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China

BackgroundInformal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home. However, the concern for informal caregivers is often overshadowed by critically ill patients. The purpose of this study is to determine the influencing factors of the subjective burden of informal caregivers and to seek solutions accordingly.MethodsBetween July and August 2019, a cross-sectional study was conducted in Shandong, China, focusing on family caregivers and critically ill patients. Subjective caregiver burden was measured by the Chinese version of Zarit Burden Interview (ZBI). The stress process model was used to identify conditions relevant to the caregiving burden and to assess their impact on family caregivers.Results554 samples were selected for analysis. The average scores of Zarit Caregiver Burden Interview (ZBI) scores in this study was 30.37±19.04 (n=554). ZBI scores of older, less educated, and spouse caregivers were significantly lower (4.12; 95%CI, 0.42 to 7.81; P =0.029). Objective and subjective burdens increased proportionally. Secondary role stress factors included the higher out-of-pocket (OOP) costs of critical diseases and lower household income, both of which increased caregivers’ subjective burdens (1.28; 95%CI, -0.06 to 2.63; p=0.062). Formal medical aid systems played a positive role in reducing subjective caregiving burdens (-7.31; 95%CI, -13.23 to -1.40; p=0.016).ConclusionsHealth policies should address both the direct medical burdens and the intangible psychological burdens of critical diseases.

Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study.

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one's own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

Firearm access and dementia: A qualitative study of reported behavioral disturbances and responses.

Cognitive impairment and behavioral changes associated with Alzheimer's disease and related dementias (ADRDs) can impair safe firearm handling ability, an issue that can be challenging for ADRD caregivers to address. In this qualitative analysis, we sought to explore behavioral disruptions that raise concerns about firearm access in dementia and how caregivers react and respond. Secondary qualitative analysis using data from semi-structured, one-on-one interviews originally conducted as part of a study to develop firearm safety educational materials for ADRD caregivers. Interviewees were English-speaking adults (≥18 years) from three stakeholder groups: ADRD caregivers (professional or informal), medical professionals (geriatricians, neurologists), and firearm professionals (retailers, range employees, instructors). For secondary analysis, transcripts of interviews were recoded and analyzed after an inductive-deductive thematic analysis process. Among 24 participants, 17 (70%) were female and 20 (83%) white; 13 (54%) had personal or professional experience with ADRD caregiving; and 5 (21%) had a firearm affiliation. Major themes were: (1) behavioral disturbances that make caregivers concerned about firearm access; (2) caregiver emotional responses to and difficulties associated with these disturbances; and (3) caregiver actions (planned or actual) to limit firearms access. Various behavioral disturbances and emotional burdens can trigger ADRD caregiver concern about firearms access, but strategies exist for restricting or safeguarding firearms in the home. Study findings suggest a need for caregiver support on this topic, including counseling by healthcare providers, advance planning for older firearm owners, and development of community resources.

Development of a psychosocial oncology core curriculum for multidisciplinary education and training: Initial content validation using the modified Delphi Method.

Despite its four decade history, the multidisciplinary specialty of psychosocial oncology (PSO) has no official consensus on core content. In 2014, the American Psychosocial Oncology Society (APOS) Board charged the APOS Professional Education Committee with outlining curricular content needed for core competence. Content validation was completed using a four-phase modified Delphi Method. During Phase I, a Professional Education Committee subgroup proposed domains and items, which were rated by the APOS Fellows and Board via online survey. During Phase II, Fellows completed a second, revised survey. Phase III incorporated early career members. Developmental and diversity items were integrated into each domain. In Phase IV, a larger group of subject matter experts were surveyed, with feedback incorporated. Validation across phases involved average rating thresholds, intraclass correlations, and final percent agreement. The Delphi Method supported 12 content domains: Cancer Basics, Psychosocial Oncology, Professional Development, Ethics, Emotional/Psychological Concerns, Sexuality and Relationship Concerns, Spiritual/Religious Concerns, Healthcare Communication and Decision Making, Social/Practical Problems, Caregiver Concerns, Cognitive Concerns, Physical Symptoms and Psychosocial Assessment/Treatment. High levels of agreement were achieved across domains (86%-100%) and items, with no significant rating differences by discipline. This proposed core content can enhance and standardize education and training in PSO including APOS' Virtual Psychosocial Oncology Core Curriculum, focused on broadly expanding the PSO workforce, particularly in underserved areas. Next steps include development of core competencies and establishment of online training modules based on this content validation.

Brief Report: Perceptions of Family-Centered Care Across Service Delivery Systems and Types of Caregiver Concerns About Their Toddlers' Development.

Family-centered care represents a collaborative partnership between caregivers and service providers, and is associated with positive caregiver and child outcomes. This approach may be especially important for caregivers with early concerns about autism, as service providers are often the gateway to appropriately-specialized intervention. Perceptions of family-centered care received from primary care providers (PCPs) and Part C Early Intervention (EI) providers were rated by two groups of caregivers: those concerned about autism (n = 37) and those concerned about another developmental problem (n = 22), using the Measure of Processes of Care (MPOC-20). Ratings did not differ across caregiver groups, but both groups rated EI providers significantly higher than PCPs, which may reflect systems-level differences between primary care and EI.

Caregiver-reported delay in presentation to pediatric emergency departments for fear of contracting COVID-19: a multi-national cross-sectional study.

ObjectiveTo determine if caregivers of children presenting to pediatric emergency departments (EDs) during the COVID-19 pandemic are delaying presenting to care for fear of contracting COVID-19.MethodsThis was a pre-planned secondary analysis of a cross-sectional survey study of caregivers accompanying their children aged 0–19 years to 16 pediatric EDs in 5 countries from May to June 2020. An anonymous online survey, completed by caregivers via RedCAP, included caregiver and child demographics, presenting complaints, if they delayed presentation and whether symptoms worsened during this interval, as well as caregiver concern about the child or caregiver having COVID-19 at the time of ED visit.ResultsOf 1543 caregivers completing the survey, 287 (18.6%) reported a delay in seeking ED care due to concerns of contracting COVID-19 in the hospital. Of those, 124 (43.2%) stated their child’s symptoms worsened during the waiting interval. Caregiver relationship to child [mother] (OR 1.85, 95% CI 1.27–2.76), presence of chronic illness in child (OR 1.78. 95% CI 1.14–2.79), younger age of caregiver (OR 0.965, 95% CI 0.943–0.986), and caregiver concerns about lost work during the pandemic (OR 1.08, 95% CI 1.04–1.12) were independently associated with a COVID-19-related delayed presentation in multivariable regression analysis.ConclusionsAlmost one in five caregivers reported delaying ED presentation for their ill or injured child specifically due to fear of contracting COVID-19 while in hospital, with mothers, younger caregivers, caregivers of children with chronic illness, and those concerned about lost work more likely to report delaying ED presentation.Supplementary InformationThe online version contains supplementary material available at 10.1007/s43678-021-00174-z.

Characterizing the Richness of Maternal Input for Word Learning in Neurogenetic Disorders.

Promoting language abilities, including early word learning, in children with neurogenetic disorders with associated language disorders, such as Down syndrome (DS) and fragile X syndrome (FXS), is a main concern for caregivers and clinicians. For typically developing children, the quality and quantity of maternal language input and maternal gesture use contributes to child word learning, and a similar relation is likely present in DS and FXS. However, few studies have examined the combined effect of maternal language input and maternal gesture use on child word learning. We present a multidimensional approach for coding word-referent transparency in naturally occurring input to children with neurogenetic disorders. We conceptualize high-quality input from a multidimensional perspective, considering features from linguistic, interactive, and conceptual dimensions simultaneously. Using case examples, we highlight how infrequent the moments of word-referent transparency are for three toddlers with DS during play with their mothers. We discuss the implications of this multidimensional framework for children with DS and FXS, including the clinical application of our approach to promote early word learning for these children.

Role of mTOR-Regulated Autophagy in Synaptic Plasticity Related Proteins Downregulation and the Reference Memory Deficits Induced by Anesthesia/Surgery in Aged Mice.

Postoperative cognitive dysfunction increases mortality and morbidity in perioperative patients and has become a major concern for patients and caregivers. Previous studies demonstrated that synaptic plasticity is closely related to cognitive function, anesthesia and surgery inhibit synaptic function. In central nervous system, autophagy is vital to synaptic plasticity, homeostasis of synapticproteins, synapse elimination, spine pruning, proper axon guidance, and when dysregulated, is associated with behavioral and memory functions disorders. The mammalian target of rapamycin (mTOR) negatively regulates the process of autophagy. This study aimed to explore whether rapamycin can ameliorate anesthesia/surgery-induced cognitive deficits by inhibiting mTOR, activating autophagy and rising synaptic plasticity-related proteins in the hippocampus. Aged C57BL/6J mice were used to establish POCD models with exploratory laparotomy under isoflurane anesthesia. The Morris Water Maze (MWM) was used to measure reference memory after anesthesia and surgery. The levels of mTOR phosphorylation (p-mTOR), Beclin-1 and LC3-II were examined on postoperative days 1, 3 and 7 by western blotting. The levels of synaptophysin (SYN) and postsynaptic density protein 95 (PSD-95) in the hippocampus were also examined by western blotting. Here we showed that anesthesia/surgery impaired reference memory and induced the activation of mTOR, decreased the expression of autophagy-related proteins such as Beclin-1 and LC3-II. A corresponding decline in the expression of neuronal/synaptic, plasticity-related proteins such as SYN and PSD-95 was also observed. Pretreating mice with rapamycin inhibited the activation of mTOR and restored autophagy function, also increased the expression of SYN and PSD-95. Furthermore, anesthesia/surgery-induced learning and memory deficits were also reversed by rapamycin pretreatment. In conclusion, anesthesia/surgery induced mTOR hyperactivation and autophagy impairments, and then reduced the levels of SYN and PSD-95 in the hippocampus. An mTOR inhibitor, rapamycin, ameliorated anesthesia/surgery-related cognitive impairments by inhibiting the mTOR activity, inducing activation of autophagy, enhancing SYN and PSD-95 expression.

Mastery of everyday life and social support needs in older vulnerable women with myocardial infarction and their relatives: a qualitative study.

The Danish public healthcare system provides a comprehensive cardiac rehabilitation (CR) programme, but attendance rates are low among older vulnerable women. Effective interventions enabling increased CR attendance are warranted. Knowledge about everyday life and social support needs is crucial to the development of effective CR interventions in this group. To explore mastery of everyday life and social support needs in older, vulnerable women with myocardial infarction (MI) and their relatives. A qualitative explorative design using semi-structured individual or dyadic interviews with patients (n = 21) and their relatives (n = 13) and applying thematic analysis. Five themes captured mastery of everyday life and social support needs. 'The Big Picture' suggesting that comorbidities dwarfed the impact of MI. 'Blaming the Doctor' illustrated issues of distrust and treatment delay. 'Rehabilitation Barriers' explained why these vulnerable patients failed to participate in CR. 'Caregiver Concerns' described relatives dual roles as supporters and supported. 'Finding their Way' indicated how patients were assisted by peer support to negotiate the trajectory. The study offers a basis for the development of CR interventions customized to this group of patients. Interventions should target patients with multimorbidity, low motivation for lifestyle changes, and transportation issues. Peer support is suggested for this group of patients where relatives are also apt to be vulnerable.

Comparison of Patient-Reported and Caregiver-Reported Swallowing-Related Quality of Life in Parkinson's Disease.

This pilot study explored agreement on swallowing-related quality-of-life scores reported by individuals with Parkinson's disease (PD) and their caregivers. Thirty-six patient-caregiver pairs completed the Swallowing Quality of Life Questionnaire (SWAL-QOL) using an online survey format. Additional background and clinical information was ascertained. A Wilcoxon signed-rank test was completed to compare the means of scores between individuals with PD and caregivers. Factors potentially influencing SWAL-QOL scores (age, employment status, sex, ethnicity, race, previous history of swallowing evaluation or treatment, caregiver concern about patient cognition, caregiver burden, and time since onset of disease) were explored using Spearman Coefficient Correlation tests. The Holm-Bonferroni method was used to adjust for multiple comparisons. Results did not reveal significant differences in SWAL-QOL scores between individuals with PD and caregiver pairs. There was a moderate degree of reliability and agreement between paired patient and caregiver scores, with the average ICC measures being 0.598 (95% CI [358, 0.748]) (F(71, 72) = 2.451, p < 0.0001). After adjusting for multiple comparisons, caregiver burden was found to be the only significant factor associated with caregivers' reported scores. No significant influential factor on reported scores by individuals with PD was found. These pilot results suggest individuals with PD and their caregivers may report similar swallowing-related quality-of-life scores. Further, caregiver burden appears to be an influential factor for caregiver-reported scores. Future studies should investigate the clinical benefits of including caregiver SWAL-QOL ratings in assessments, either as a supplement to patient scores to identify discrepancies across the dyad or in place of patient scores if needed. Further, caregiver burden and its influence on dysphagia identification and management should be explored, with targeted interventions to manage caregiver burden.

Preparing for Puberty in Girls With Special Needs: A Cohort Study of Caregiver Concerns and Patient Outcomes.

To characterize the patient population with cognitive or physical impairments that presents for anticipatory guidance of puberty, evaluate caregiver concerns with respect to puberty, and describe chosen management strategies and outcomes following menarche. Retrospective cohort study SETTING: Academic tertiary care women and children's hospital PARTICIPANTS: Eligible female patients with special needs up to age 26 years presenting for anticipatory guidance from 2009 to 2018 MAIN OUTCOME MEASURES: Primary outcomes included characterization of patients presenting for anticipatory guidance and their reasons for menstrual management. Secondary outcomes were satisfaction with menstrual management and bleeding patterns. A total of 61 patients presented for anticipatory guidance of puberty, on average 13.5 months prior to menarche. Compared to the overall adolescent population with special needs who presented for gynecologic care, patients who had autism spectrum disorder (ASD), were nonverbal, or had attention-deficit/hyperactivity disorder (ADD/ADHD) were more likely to present for a pre-menarchal visit to discuss anticipated pubertal development (P < .001, P = .009, and P = .04, respectively). More than half of families described potential behavioral changes as their main concern. The majority of post-menarchal patients (80%) desired hormonal management of menses, including 30% of patients who had placement of a levonorgestrel intrauterine device. In all, 96% of patients were satisfied with their final menstrual bleeding pattern; 50% achieved amenorrhea or light spotting. This study describes the important role of pre-menarchal reproductive counseling for girls with disabilities. Anticipation of puberty causes great anxiety in families and patients, especially those with ASD, ADD/ADHD, and non-verbal status. Providers should consider initiating these conversations early in pubertal development.

Findings in physical examination of the external genitalia in pediatric age − different is not always pathological - Part II (female)

Introduction: Findings in the physical examination of the external genitalia in children are often a source of concern for parents and caregivers, not only for the emotional significance that people unconsciously attribute to these structures (partly due to their reproductive function), but also for the physical and psychological impact in the child. Due to the child’s close monitoring and periodic surveillance, the family physician has a key role in the identification and initial guidance of these cases. Objectives: To review the evidence about main variations and anomalies of the external male genitalia in pediatric age regarding diagnosis and clinical approach in primary health care. Results: In most cases, anomalies in the external male genitalia represent variants of normal and/or do not significantly affect function, thus only requiring clinical surveillance and no intervention. However, some cases − as epispadias, hypospadias, and urethral duplication − require surgical intervention and early action is crucial for the success of implemented measures. Conclusion: Physical examination is a key aspect of child assessment. Although changes in physical examination of the external male genitalia mostly represent normality variants, clinicians should be able to recognize pathological changes and properly refer those cases without overloading health services or causing unnecessary anxiety to children and caregivers.

Findings in physical examination of the external genitalia in pediatric age − different is not always pathological − Part I (male)

Introduction: Findings in the physical examination of the external genitalia in children are often a source of concern for parents and caregivers, not only for the emotional significance that people unconsciously attribute to these structures (partly due to their reproductive function), but also for the physical and psychological impact in the child. Due to the child’s close monitoring and periodic surveillance, the family physician has a key role in the identification and initial guidance of these cases. Objectives: To review the evidence about main variations and anomalies of the external male genitalia in pediatric age regarding diagnosis and clinical approach in primary health care. Results: In most cases, anomalies in the external male genitalia represent variants of normal and/or do not significantly affect function, thus only requiring clinical surveillance and no intervention. However, some cases − as epispadias, hypospadias, and urethral duplication − require surgical intervention and early action is crucial for the success of implemented measures. Conclusion: Physical examination is a key aspect of child assessment. Although changes in physical examination of the external male genitalia mostly represent normality variants, clinicians should be able to recognize pathological changes and properly refer those cases without overloading health services or causing unnecessary anxiety to children and caregivers.

Concerns of Family Caregivers during COVID-19: The Concerns of Caregivers and the Surprising Silver Linings

ABSTRACT COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants’ perceptions. Caregiver’s concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.

“What If You Die?”: Skipped‐Generation Caregivers' Reported Conversations With Their Grandchildren About Death

ObjectiveThis study focused on grandparent caregivers' communication about death with their grandchildren.BackgroundSkipped‐generation grandfamilies have become more common in the United States. However, much research on death communication focuses on traditional parent–child(ren) nuclear families, making it necessary to understand how families with other structures, such as skipped‐generation grandfamilies, address this topic.MethodThis qualitative study applied communication privacy management as a guiding theory and used progressive focusing to collect 30 in‐depth interviews with grandparent caregivers. Interviews were analyzed using thematic analysis.ResultsThree themes and eight subthemes emerged. The first theme centered on grandparent caregivers' motivations for disclosing about death to grandchildren and comprised three subthemes: Exposure to Death and Lifecycle Concepts, Grandchild Curiosity, and Unique Grandparent Caregiver Concerns. The second theme reflected grandparent caregivers' motivations to conceal information about death, which included Age Inappropriateness, Trauma Aversion, and Lack of Utility. The third theme captured grandparent caregivers' perceptions of whether their grandchildren were concerned about caregiver death.ConclusionLike traditional parent–child(ren) nuclear families, grandfamilies identify death as an important but challenging topic to discuss. However, the unique characteristics of grandfamilies magnify challenges and complexities of discussing death.ImplicationsThe findings contribute to communication specialists', social workers', and psychologists' understanding of how grandfamilies manage privacy surrounding death.

The assessment of parents' knowledge, attitudes and concerns about febrile seizures in children at tertiary hospitals in Rwanda-a descriptive study.

Febrile seizures (FSs) are the most common seizure disorder in childhood. No previous research has been performed to assess caregiver attitudes, knowledge and concerns of FSs in Rwanda or East Africa. This study sought to assess knowledge, attitudes and concerns regarding FS among caregivers of children presenting to tertiary hospitals in Rwanda using a previously validated questionnaire. The secondary objective was to assess the reliability of a translated version of the Huang Febrile Seizures Questionnaire (HFSQ). A multi-centre observational study was conducted at four tertiary teaching hospitals in Rwanda. The admitting doctor determined that children met the definition of FSs. A translated version, of a validated questionnaire, the HFSQ, employing yes/no and five-point Likert questions, was used for this study, after minor adjustments. Eighty-six caregivers were recruited. Caregivers had low levels of pre-existing knowledge regarding FSs. The most significant caregiver concern was that 'siblings will have FSs too'(mean = 3.62 ± 0.7). Caregivers felt that children with FSs do not need more attention and care and that FSs can be outgrown (mean = 3.4 ± 1.0). The findings support the need for locally relevant educational materials to be shared with caregivers after a FS event. The HFSQ is a good quality tool for assessing parental knowledge and concerns and has the potential to be used in clinical practice as a benchmarking tool for education.