Caregivers Of Children Research Articles

Impact of COVID-19 Pandemic on Caregivers of Children with Neurodevelopmental Disabilities: A Qualitative Study

Background/Aim: It is well known that caregivers of children with neurodevelopmental disabilities (NDD) face challenges. These challenges increased further due to the coronavirus disease 2019 (COVID-19) pandemic and the related restrictions. There was very little data from India on these challenges. This study was done with the primary aim to gain insights about the challenges faced by parents of children with NDD through their personal stories. Methods: Participants were recruited using purposive sampling method and semi-structured interviews were conducted through a telephone or in person. Data saturation was achieved by the sixth participant and 2 more interviews were performed for further confirmation. Interviews were transcribed, and a 7-step Colaizzi’s phenomenological method was used to identify different themes. Results: The impact of COVID-19 on caregivers of children with NDD can be summarized into 4 broad themes. First, there were challenges related to “therapy” which included closure of day-care centers and schools, inaccessibility to professionals, and disruption in home-based learning. Second, there were “child” related challenges which included inappropriate behaviors. Third, there were “family” challenges which included misunderstandings between parents and difficulties in adhering to family routines. Lastly, there were “personal” challenges related to physical and psychological health. Conclusion: The personal stories of caregivers of children with NDD highlight the pressing need to provide appropriate support and formulate holistic models to enhance well-being of caregivers during difficult periods.

Caregiver-centric interventions for family carers of children with neurodevelopmental disorders in India – A scoping review

Caregiving for children with neurodevelopment disorders (NDDs) can be a lifelong process that takes hold of an individual’s time, energy, and resources. This raises a question about the caregivers’ needs and concerns and the extent to which they receive medical or psychological attention during caregiving. This scoping review examines the psychosocial interventions conducted in India for caregivers of children with NDDs. The search strategy involved analyzing published literature on interventions for caregivers of children with NDDs in India from online databases from 2013 to March 2023. Sixteen intervention studies were identified and categorized into child-centric, caregiver-centric, and family-based approaches. Most studies were limited to thesis publications and lacked peer-reviewed publications. However, there has been a gradual increase in caregiver-centric intervention studies since 2019, focusing on alleviating distress and promoting caregiver well-being. Approximately 87.5% (14 out of 16 studies) adopted intervention components focusing on the caregiver’s outcomes and well-being. It can be concluded from the review that more applied research on caregiver-centric interventions is needed in India, focusing on the caregivers’ concerns in depth. The study will provide insights into the importance of practicing caregiver-centric interventions and recommend healthcare providers and policymakers initiate policies, provisions, and programs that benefit the caregiver community.

Perceived impact of pediatric palliative care: caregiver's perspective.

Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective. Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews. We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC. The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

Food and housing insecurity, COVID-19 pandemic effects on health-related activities, and care plans for children with obesity

To understand the association between food insecurity (FI) and housing insecurity (HI) risk, the effects of the COVID-19 pandemic on health-related activities among children with overweight or obesity, and caregivers' and clinicians' challenges and priorities related to pediatric weight management. We conducted surveys with caregivers of children with overweight and obesity and pediatric clinicians at two academic medical centers in the Greater Boston area. We used multivariable logistic regression models to examine associations between FI and HI risk and the effects of the COVID-19 pandemic on health-related activities and descriptive statistics to summarize caregivers' and clinicians' challenges and priorities related to pediatric weight management. We analyzed data from surveys with 344 caregivers and 100 pediatric clinicians. Overall, 37% of caregivers endorsed both FI+HI, 18% FI alone, 10% HI alone, and 35% neither FI/HI. In the adjusted logistic regression models, combined FI+HI (reference: neither FI/HI) was significantly associated with higher odds of sleeping less (aOR 2.96 [95% confidence interval (CI): 1.46, 6.01]) and higher odds of spending less time outside (aOR 2.10 [95% CI: 1.06, 4.16]). Top priorities for pediatric weight management identified by both caregivers and clinicians were related to physical activity and availability of outdoor spaces. Endorsement of both FI+HI was associated with children getting less sleep and spending less time outside during the COVID-19 pandemic. Future innovations in care plans for children with overweight and obesity should be adapted to a family's social context and should incorporate caregivers' and clinicians' challenges and priorities.

The Knowledge, Perception And Practices Of Myths Encountered Among Caregivers In Enugu, Nigeria: A Cross-Sectional Study

Introduction: Many beliefs concerning child care abound and these vary across all walks of life. Assessed the knowledge, perception and practice of these myths among care- givers of children living in Enugu. Our survey found that, there is still a high level of belief in myths and local practices among caregivers in Enugu. Methods:Study population- caregivers visiting paediatric outpatient clinics in Enugu. Sampling method- a hospital-based, cross-sectional study. Self- administered questionnaires were used to obtain information from the caregivers. Analysis-Data collected was analyzed using SPSS version 26.0 Results: shows that 83.7% of the study participants are females while 16.3% are males, giving the male to female ratio as 1:5. Most of the study participants (75.2%) were within the age bracket of 21 and 40 years and the mean ± SD age was 32.42 ± 9.83. The most prevalent belief is that the breast nipple must be washed before every feeding, reported by 64.2% of participants. The most commonly practiced belief is that teething causes symptoms, reported by 49.2% of respondents. This is followed by the belief that breast milk can become sour if not consumed for a long period, practiced by 46.6% of respondents. The third most practiced belief is related to "Jedi jedi" (30.6%), a condition locally associated with gastrointestinal distress.These findings highlight that, while traditional beliefs are pervasive across all age groups, younger participants are more likely to adhere to certain beliefs, particularly those related to dietary restrictions and traditional remedies for convulsions. Conclusion: It can be inferred from the findings of this survey that, there is still a high level of belief in myths and local practices among caregivers of children in Enugu, despite efforts to educate the general public about childhood illnesses. This study also shows that maternal education is an important factor for improved outcomes in paediatric care in our environment

Clean intermittent catheterisation determinants and caregiver adherence in paediatric patients with spinal dysraphism and spinal cord injury in a paediatric spinal differences clinic: a mixed methods study protocol

IntroductionClean intermittent catheterisation (CIC) is the standard of care for treating neurogenic lower urinary tract dysfunction (NLUTD), the most common bladder dysfunction in children diagnosed with spinal dysraphism (SD) and...

The Key to Successful Social Interactions

Autobiographical memory (ABM) is memory for past personal experiences and is foundational to the development of many cognitive processes. As such, ABM and social learning are developmentally intertwined and functionally dependent, and impairments in each are well-documented in autism. Evidence suggests that elaborative reminiscing (ER) causally and positively impacts neurotypical children’s ABM and social learning. The purpose of this study was to evaluate the effectiveness of a new caregiver-mediated ABM intervention that adapts the principles of ER in ways that align with best practices for supporting social learning in autistic children. Participants were 26 caregiver-child dyads; all children (ages 6–15 years) had a diagnosis of autism. We hypothesized that: (1) caregivers would demonstrate improvements in ER across three phases of study (pre-treatment, post-treatment, and follow-up) and (2) children would demonstrate improvements in supported and unsupported ABM and social learning. Results indicated that caregivers demonstrated increased elaborativeness at post-intervention, and that this was maintained at follow-up. Additionally, children demonstrated improvements in supported memory and some measures of social learning at post-intervention, and this was maintained at follow-up. Children also showed improvements in unsupported memory at post-intervention; however, this was not maintained. Results suggest that caregivers of autistic children can be trained to use ER, and that ER is associated with the development of supported memory in autistic children across a wide range of ages. Clinical applications include supporting social learning and connection in autism using ER.

A qualitative study to explore the experiences faced by primary caregivers of children with mental illness during the COVID-19 pandemic at the child and adolescent psychiatry OPD

Aim: To explore the lived-in experiences of primary caregivers of children with mental illness while taking care during the coronavirus disease 2019 (COVID-19) pandemic. Methodology: This study is a descriptive phenomenological study. Convenience sampling was used. Data were collected by in-depth interviews of 30 primary caregivers of children with mental illness, during the COVID-19 pandemic. All interviews were audio-recorded and analyzed using a thematic approach. Results: The overall aura of fear and panic brought by the pandemic found its way into the psyche of patients and the development of their illnesses during the pandemic. The entirety of the work brought out three themes and 11 subthemes as categorized for the aim of this study. Conclusion: Primary caregivers of children with mental illness during the COVID-19 pandemic reveal that lifestyle changes, such as online education, confinement, overuse of electronic gadgets, and increased laziness and lethargy in children after prolonged lockdown, were drastic changes which caregivers had to deal with.

Educational therapy for caregivers of children with obstetric brachial plexus palsy: a scoping review.

Obstetric brachial plexus palsy (OBPP), a condition resulting from the stretching of nerve structures in an infant's upper limb during childbirth, necessitates early physiotherapy intervention. Continuation of rehabilitative activities at home is critical for optimal recovery, highlighting the need for effective caregiver education in managing this condition. This scoping review seeks to consolidate and examine existing research on physiotherapy treatments for OBPP, with a specific focus on the educational support provided to caregivers. The ultimate objective is to develop an informative booklet for caregivers, offering essential guidance for home management of affected children. A comprehensive search was conducted across PubMed, Cochrane Library, Scopus and PEDro from May to October 2023, with no restrictions on study design, evidence level, publication date, geography, or language. Articles were selected based on preset eligibility criteria. The search yielded 13 relevant studies, encompassing a diverse range of research designs including reviews, systematic reviews, case reports, controlled trials, and a retrospective study. This review underscores the necessity of a personalized rehabilitation approach in treating OBPP, with parental involvement being crucial. It also identifies a gap in research regarding the long-term effectiveness of these interventions, suggesting the need for further studies to ascertain optimal treatment modalities.

A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home

IntroductionThe purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts. MethodA qualitative descriptive study was completed with 11 parental caregivers interviewed. ResultsUsing conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role. DiscussionNavigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.

614P Burden on parent caregivers of children with a muscle disease: a qualitative study

614P Burden on parent caregivers of children with a muscle disease: a qualitative study

Coping strategies adopted by caregivers of children with autism in the Limpopo Province, South Africa

Background: Emotion- and problem-focused coping strategies are frequently employed by caregivers of autistic children to increase their general well-being and resilience to the stress of raising the child. Although these strategies cannot directly address the situation, it is useful for handling stressful situations that cannot change.Objectives: The study seeks to explore and understand the emotion- and problem-focused strategies that caregivers use to cope with the challenges of raising a child with autism.Method: This was a qualitative, exploratory and descriptive research study. Twenty-eight caregivers were purposive-convenient sampled from the public special schools where their autism spectrum disorder (ASD) children are schooling. Semi-structured interviews were used to gather data, which were then transcribed and subjected to thematic analysis.Results: Positive emotion-focused strategies include positive reappraisal, reframing and acceptance. Negative emotion-focused strategies include denial, emotional release, cognitive distortion, self-isolation, overprotection, negative self-talk, punishment and religion. Problem-focused coping strategies include active and adaptive coping, peer group, professional support and social support.Conclusion: The coping methods that have been identified can be integrated into intervention programmes and serve as a guide for specialised institutions that offer more extensive knowledge and assistance to families who are caring for children with ASD.Contribution: The study contributes to understanding the emotion- and problem-focused strategies adopted by rural caregivers in managing their emotions, interpretation of the situation and adjusting to the demands of raising an autistic child.

Parental descriptions of sensory processing in Autism

BackgroundThe processing of sensory information in autistic people has a major impact on their daily lives. Current research faces challenges in fully capturing the heterogeneity of sensory profiles in autism, but caregiver perspectives could offer valuable insights, deepening our understanding of these differences in sensory experiences. The present study aimed to explore this sensory processing characterization based on the testimonies from caregivers of children and adults with autism to contribute to the knowledge obtained from answers to questionnaires. MethodsCaregivers of 15 participants with autism, aged between 4 and 34 years, participated in focus group sessions. Each session was conducted using open-ended questions on sensory processing, and their responses were analyzed by means of semantic analysis using NVivo software. ResultsA thematic analysis of the data corpus highlighted three themes of behavioral responsivity to sensory input as reported by parents: (1) sensory input, (2) sensory modulation, and (3) impact on daily life. Sensory input encompassed seven sub-themes related to sensory channels. Sensory modulation allowed for the identification of sub-themes such as sensory overload, emotional regulation, and regulation strategies. Finally, the theme of the impact on daily life highlighted sub-themes of reactions to change, feeding problems, and risk-taking behaviors. ConclusionsThese findings suggest that some identified aspects, such as stimming and sensory-seeking, sensory overload and regulation strategies could potentially be added to sensory evaluations.

Data Mining Technique for Diagnosing Autism Spectrum Disorder

Early detection of autistic symptoms can help lower overall medical expenses, which is beneficial given that autism is a developmental disease that is associated with high medical costs. To assess whether or not a kid may have autism spectrum disorder (ASD), screening for ASD involves asking the child's parents, caregivers, and other members of the child's immediate family a series of questions. The current methods for screening for autism, such as the autistic quotient (AQ), might require a significant number of questions in addition to careful question design, which can make an autism examination more time-consuming. The effectiveness and reliability of the test could be improved, for example, by employing data mining strategies. It could be possible to create a system that can foretell ASD at an early stage and give patients, caregivers, and medical professionals dependable and precise findings on the probable need for expert diagnostic services. This research aims to develop a reliable model for estimating the likelihood of an individual being diagnosed with autism spectrum disorder between the ages of 4 and 17. To identify varying degrees of autism, one such model was constructed by utilizing the stochastic gradient descent (SGD) algorithm. Mining data is typically understood to be a decision-making process that enables more effective utilization of available resources in terms of overall performance. The results showed that the suggested prediction model, which used the stochastic gradient descent (SGD) algorithm, could find ASD with an average error of 0.03% and an accuracy of up to 94.5%.

Clinician-caregiver informant discrepancy is associated with sex, diagnosis age, and intervention use among autistic children.

In some cases, a clinician's perceptions of a child's autism-related behaviors are not the same as the child's caregiver's perceptions. Identifying how these discrepancies relate to the characteristics of the child is critical for ensuring that diagnosis procedures are unbiased and suitable for all children. This study examined whether discrepancies between clinician and caregiver reports of autism features related to the child's sex at birth. We also explored how the discrepancies related to the age at which the child received their autism diagnosis and how much intervention they received. We found that clinicians rated autism features higher than caregivers for boys and rated autism features lower than caregivers for girls. In addition, lower clinician relative to parent ratings was related to being diagnosed at an older age and receiving less intervention. These findings suggest that there is more to learn about the presentation of autism-related behaviors in girls. When caregiver and clinician ratings of autism features do not align, it may be important to consider caregivers' ratings to obtain a more accurate picture of the child's autism features and the support they may need.

Healthcare Needs of Incarcerated Pregnant and Postpartum Women: Implications for Just Nursing Practice

Women remain the primary caregivers for children, making the imprisonment of women and mothers potentially more complicated for families. Women in the prison system often have significant health problems and lack access to care even before incarceration. While women constitute a minority in the prison system, they have gender-specific needs, often related to pregnancy, birth, and the postpartum period. Often, prisons are not equipped to provide appropriate care, and many state policies vary concerning the healthcare needs of incarcerated pregnant and postpartum women. This article offers an overview of current issues in reproductive healthcare for this vulnerable population by providing a brief background on the topic and exploring how nurses can become their advocates. A review of selected literature describes current relevant research, followed by viewpoints from various healthcare organizations. Recommendations include prison programs and services targeted to pregnant and postpartum women, such as birth doulas and prison nurseries, which are known to benefit this population. Nurses can advocate for this unique population by using a trauma-informed framework of care and participating in legislative efforts to support pregnant and postpartum women who are incarcerated.

The weight of care: exploring the challenges faced by primary caregivers of children with traumatic brain injuries.

Traumatic brain injury (TBI) is a leading cause of death and disability in children, yet the full impact on their primary caregivers remains largely uncharted. This study seeks to delineate the current scope of the caregiving burden and to identify the key determinants that shape it, aiming to enhance clinical interventions and caregiving approaches. We conducted a comprehensive survey of primary caregivers of pediatric TBI patients admitted to a top-tier children's hospital in China, spanning the period from January 15 to November 15, 2023. The Zarit Burden Interview (ZBI) served as the primary tool for gauging the level of caregiver burden, while the Simplified Coping Style Questionnaire (SCSQ) provided insights into their coping strategies. Our survey encompassed 284 primary caregivers of TBI children. The average ZBI score for this cohort was 40.57±10.41, indicating a considerable burden. Correlational analysis uncovered robust links between the burden of caregivers and several pivotal factors: the severity of TBI (r=0.496), intensive care unit (ICU) stay (r=0.525), monthly household income (r=0.604), and reliance on negative coping mechanisms (r=0.493), all of which were statistically significant (P<0.05). Further, a multiple linear regression analysis affirmed that the severity of TBI, ICU admissions, monthly income, and negative coping styles were independent predictors of caregiver burden (P<0.05). The findings underscore the substantial burden shouldered by primary caregivers of TBI children. It is imperative to direct targeted support towards caregivers from economically disadvantaged backgrounds and those who tend to adopt negative coping strategies, to alleviate their burden.

Psychological Wellbeing and Coping Strategies of ADHD Child Caregivers

Psychological Wellbeing and Coping Strategies of ADHD Child Caregivers

Predictors of measles-rubella vaccination status in the Savannah Region, Ghana: A cross-sectional study among caregivers of children aged 18–59 months

IntroductionSavannah Region witnessed a decline in measles-rubella (MR) vaccination coverage prior to the measles outbreak in 2022. This study aimed to assess contributory factors of the low routine MR vaccination coverage and proffer recommendations to improve vaccination uptake. MethodsA cross-sectional study was conducted in two districts (Bole and Central Gonja) of Savannah Region from December 2022 to June 2023. Caregivers of children 18–59 months were randomly selected and interviewed using a structured questionnaire. Bivariate and multivariate logistic regression were performed to assess predictors of MR vaccination status. ResultsChildren of caregivers with inadequate knowledge of MR vaccination (AOR = 0.58, 95 %CI: 0.47–0.72), travelled more than five km to access health services (AOR = 0.48, 95 %CI: 0.39–0.59), described health workers attitude as poor (AOR = 0.44, 95 %CI: 0.26–0.74), and those who sought treatment for adverse events following immunization (AEFI) from the pharmacy (AOR = 0.65, 95 %CI: 0.51–0.84) were less likely to complete MR vaccination. On the contrary, children of female sex (AOR = 1.27, 95 %CI: 1.05–1.53), aged 24–59 month (AOR = 2.56, 95 %CI: 1.05–1.53), caregivers with primary or secondary education (AOR = 1.43, 95 %CI: 1.11–1.84; and AOR = 2.23, 95 %CI: 1.64–3.03 respectively), and those who did not experience rescheduling of vaccination sessions (AOR = 1.61, 95 % CI: 1.25–2.01) were more likely to complete routine MR vaccination schedule. ConclusionInadequate caregiver knowledge, poor geographical access to health services, poor healthcare worker attitude, and non-institutional management of AEFI significantly contributed to the low MR vaccination uptake in the Savannah Region. Adopting tailored approaches to addressing these factors could improve vaccination coverage.

Determinants of Timely Healthcare-Seeking Behaviour and Knowledge of Childhood Danger Signs in Caregivers of Children Below Five Years Attending Gita Sub-County Hospital, Kisumu, Kenya

Morbidity and mortality in children below five years are still relatively high even after many interventions, especially and low and middle-income countries. Many of the deaths are due to preventable causes. Timely seeking of healthcare from qualified personnel as soon as the child shows signs and symptoms of disease is a game changer, especially to the treatment outcomes. However, this is determined by various factors including the caregiver’s age and knowledge about childhood illnesses, including danger signs. This cross-sectional study aimed to investigate the determinants of timely healthcare-seeking behaviour and knowledge of danger signs in caregivers of children below five years attending Gita Sub-County Hospital in Kisumu, Kenya. Systematic sampling was used to include 324 caregivers in the study. Using structured pretested interview-guided questionnaires, data was collected, cleaned and analysed using into GraphPad Prism 10.2.0 (392). The mean age of the participants was 28.38 years. Knowledge about childhood danger signs in children by their caregivers was poor (35%). Age (31-40 and 41-50 years at [AOR=1.32(95%CI: 0.77-1.87) and AOR=1.29(95%CI: 0.76-1.82)] respectively), secondary [AOR=1.34(95%CI: 1.14-1.54)] and tertiary education [AOR=2.07(95%CI: 0.8-3.33)]), formal employment [AOR=1.62(95%CI: 1.31-1.92)] and no source of income [AOR=1.75(95%CI: 0.61-2.89)] improved caregivers’ knowledge about danger signs in children. Timely healthcare seeking for sick children was low (25%). Age (≤ 20 years [ AOR=3.89 (95%CI: 2.43-5.34)]), marital status (divorced/separated, single and widowed caregivers [AOR=2.55(95%CI: 0.91-4.18), AOR=2.46(95%CI: 1.67-3.24) and AOR=2.41(95%CI: 1.92-2.89) respectively]), source of income (formally employed and self-employed [(AOR=2.9(95%CI: 2.45-3.34) and AOR=2.42(95%CI: 1.89-2.92)] were promotors of timely healthcare seeking. Caregivers need to be sensitized about danger signs in their children and the need to seek timely healthcare once their children present with any one of the danger signs