Child Care Experiences Research Articles

The experiences of secondary caregivers of children diagnosed with intellectual disabilities

Secondary caregivers of children diagnosed with intellectual disabilities in Gauteng have experiences of caring for children diagnosed with intellectual disabilities. The experiences needed to be explored. The study aims to explore and describe the experiences of secondary caregivers of children diagnosed with intellectual disabilities. The study was conducted in Gauteng province, South Africa. Three Municipalities of Gauteng were covered. A qualitative-exploratory-descriptive and contextual research design was adopted, using a non-probability purposive sampling technique to select participants. Data were collected using semi-structured individual interviews. Twenty participants were interviewed. Data analysis was done, using Content data analysis and ATLAS. it. Findings were verified with an independent co-coder. Challenges of caring and unmet needs of secondary caregivers were identified. Challenges found are lack of training on intellectual disability, lack of resources, staff shortage, emotional trauma, lack of parents’ support, victimisation and threats, lack of communication by management and staff exploitation, leading to financial struggle. Identified unmet needs are the need for training, the need for adequate resources, the need for staff increases, the need for parents’ involvement in caring, the need for improvement in communication by managers, the need for emotional support and the need for salaries increase, incentives and Performance Management Development System (PMDS). The study provided insight to what secondary caregivers are going through when caring for children diagnosed with intellectual disabilities, and what needs should be addressed for secondary caregivers.

"The People Criticized Me and Insulted Me Due to Having a Child with Defect": Experiences of Somali Parents of Children with Anorectal Malformation.

Treatment of anorectal malformations (ARM) and the management of clinical outcomes are challenging for families. While most studies focus on mothers suffering from care burden, high stress, and low quality of life, there is limited knowledge of what fathers of children with ARM experience; therefore, this study aimed to examine how both mothers and fathers have experience caring for children with ARM and how beliefs and cultural issues affect the perception of congenital anomalies. A qualitative design. Consolidated criteria for reporting the qualitative research guidelines were used in this study. The guidelines for thematic analysis were followed for data analysis. Ten mothers and six fathers were interviewed, and their mean age was 32.5 ± 4.2 years. Of the 75% (n = 12) illiterate and 93.7% (n = 15) had an expanded family type, all their religious affiliations were Muslim. The four main themes were (1) ambiguity, (2) challenges, (3) stigma, and (4) coping, which were determined in line with the results of the data analysis of parents' views on having and caring for children with ARM. In this study, many Somali parents reported that they lacked disease and treatment knowledge, physical exhaustion, and some difficulties related to a lack of access to the hospital because of living in rural areas, caring for the child, and dealing with long-term complications, colostomy, anal dilatation, and enema before or after anoplasty. While all parents mentioned that having a child with ARM was a fate, it was seen as punishment by their close social environment. Consequently, this study could serve as a foundation for planning comprehensive healthcare and physical and psychosocial support for multidisciplinary health professionals.

Supporting data driven translational patient-centered care using network analysis to visualize symptom distress in children with serious illness.

There are an increasing number of techniques and tools to improve the capacity for children to relay their perceptions of their symptom experience while undergoing blood and marrow transplant (BMT). Network analysis (NA) is a tool that can illustrate associations between symptoms and the distress they cause. We aimed to develop a biopsychosocial assessment clinical analytic tool to examine symptom relationships for children undergoing BMT to find actionable relationships for intervention to improve clinical outcomes including mood. This pilot study used an analytical mobile application tool to support a wide scope of 15 biopsychosocial symptom distress levels and five mood assessments. Children recorded their symptom distress and mood using the app. NA was used to explore relationships between symptom distress and mood. Four children, 11-14 years old, undergoing BMT used the app daily during hospitalization. We found a strong presence of emotional distress and its associations symptom distress and mood. Multiple symptom associations were identified including associations between the set of symptoms difficulty breathing and fever (0.557), sad and worried (0.429). Of note, pain distress had a strong capacity to bridge other symptoms and was connected directly to many symptoms. We found the significance of patient struggles with emotional and symptom distress and the importance of this relationship to other clinical outcomes. This provides valuable insights and an improved understanding of the child's symptoms. Our findings support early assessment, intervention, and improved symptom communication to enhance sense of well-being and the child's care experience.

The lived experiences of mother's caring for children with uncontrolled asthma: A qualitative study.

Childhood-onset asthma is a chronic respiratory disease that profoundly impacts patients, their families, and healthcare systems. This study explores the lived experiences, challenges, and perceptions of mothers in managing asthma, controlling symptoms, and maintaining the quality of life for their children with asthma in Palestine. A qualitative descriptive design through semi-structured interviews was used in this study. Purposive sampling was used to identify mothers who have children with severe uncontrolled asthma in the four public hospitals with pediatric units in the West Bank, Palestine. Mothers of children with scored below 15 on the asthma control test were included in the study. The data were analyzed using an analytical framework following a thematic analysis through the NVivo 11. A total of 20 mothers participated in interviews wherein they delineated the most important challenges negatively affecting asthma management from mothers' perspectives. These challenges encompassed frequent emergency room visits, improper medication administration practices, and limitations in physical activity. The mothers expressed concerns regarding asthma control, including anxieties concerning the chronicity of the illness, adverse effects of medications, and susceptibility to weather fluctuations. The main themes that emerged from the data included reduced quality of life for the child, parental responsibility for monitoring triggers, symptoms, and medications, challenges in asthma management, apprehensions regarding asthma control, and strategies for enhancing asthma management. This study emphasizes the pressing need for targeted interventions to address asthma management, environmental triggers, and psychosocial disruptions related to asthma in children with asthma to enhance the quality of life and asthma control. This study highlights the importance of developing strategies that provide mothers with the appropriate information and tools to navigate the complexities of caring for a child with asthma.

Interrogating the role of anti-Blackness in the early care and education experiences of Black children and families: A call for advancing equitable science and practice

Interrogating the role of anti-Blackness in the early care and education experiences of Black children and families: A call for advancing equitable science and practice

Lonely, stressed-out moms: Does the postindustrial social experience put women at risk for perinatal mood disorders?

Perinatal mood and anxiety disorders (PMADs) are estimated to affect as many as 17.7% of mothers in agricultural and postindustrial societies. Various lines of research converge to suggest that PMADs may be 'diseases of modernity', arising from a mismatch between the environments in which humans evolved over hundreds of thousands of years and contemporary postindustrial lifestyles. Here we highlight the social context of childrearing by focusing on three sources of mismatch associated with PMADs: closer interbirth spacing, lack of allomaternal support and lack of prior childcare experience. The transitions to agriculture and industrialization disrupted traditional maternal support networks, allowing closer birth spacing without compromising infant survival but increasing maternal isolation. Caring for closely spaced offspring is associated with high levels of parenting stress, and poses a particular challenge in the context of social isolation. The mother's kin and community play a critical role in allomothering (childcare participation) in all contemporary hunter-gatherer societies, facilitating a system of simultaneous care for children of a range of ages with unique age-specific needs. The absence of social support and assistance from allomothers in postindustrial societies leaves mothers at increased risk for PMADs due to elevated caregiving burdens. Furthermore, the traditional system of allomothering that typified human evolutionary history afforded girls and women experience and training before motherhood, which likely increased their self-efficacy. We argue that the typical postindustrial motherhood social experience is an evolutionary anomaly, leading to higher rates of PMADs.

Nursing discharge teaching of hospitalized postpartum women in China: A cross-sectional study

BackgroundPostpartum women encounter a diverse array of physiological challenges following childbirth, and they may also contend with issues such as a lack of self-care knowledge childcare knowledge, and childcare experience. This study aimed to explore the quality of discharge teaching for hospitalized postpartum women. MethodsA total of 292 parturients who gave birth in a tertiary hospital were selected using the convenience sampling method and surveyed using a general data questionnaire and discharge teaching quality scale. ResultsThe total score for the quality of discharge teaching was 111.95 ​± ​28.64. In bivariate analysis, significant differences were identified between postpartum women with differences in postpartum complications, ambulation time, wound pain, infant health status, and infant feeding methods (p ​< ​0.05). Wound pain and infant feeding methods were significant factors in a multiple linear regression model (p ​< ​0.05). ConclusionsNursing staff should focus on psychological nursing care and give more personalized teaching to postpartum women with severe wound pain and who bottle feed their newborns.

Core outcomes and factors influencing the experience of care for children with severe acute exacerbations of asthma: a qualitative study

ObjectiveTo identify the outcomes considered important, and factors influencing the patient experience, for parents and caregivers of children presenting to hospital with a severe acute exacerbation of asthma. This work...

The factorial survey as an approach to investigate clinical decision-making: examining influences on a clinician's decision to initiate life-sustaining clinical technology for a child with spinal muscular atrophy type 1

BackgroundSpinal Muscular Atrophy (SMA) type 1 is a debilitating condition with a poor prognosis, though therapeutic advances are promising. Long-term ventilation is a common management strategy as respiratory function deteriorates. Without consensus on best practice respiratory management, the decision to initiate invasive LTV (I-LTV) for this group of young children involves many ethical considerations. Understanding the main influencing factors on a clinician's likelihood to initiative I-LTV for a child with chronic critical illness is important to maintain transparency and trust with the family during this challenging time.MethodsA factorial survey was used to identify the factors that influence a clinician to support initiation of I-LTV for children with SMA type 1. Factorial survey content was based on literature and evidence-based practice and the content was subject to extensive pretesting and pilot testing. An anonymous survey was disseminated (Oct 2021–Jan 2022), via eight international professional organisations, to clinicians with experience caring for children at the time of initiation of I-LTV.Results251 participants answered 514 vignettes on SMA type 1. The greatest influencing factor on clinician's likelihood to initiate I-LTV was parental agreement with the need to initiate I-LTV. Additional qualitative comments from participants support this finding. Clinicians also highlighted the important role of innovative therapies as well as the availability of supports for families when considering initiation however these findings were context based.ConclusionsThe factorial survey approach provides a valuable way of identifying influencers on decision-making in sensitive situations. The findings demonstrate the acceptance of the centrality of parental influence in decisions on care delivery. Effective communication with the child's family is key to ensuring shared understanding and agreement of goals of care. More international research is needed on the long-term effects of novel treatments, as well as impact on quality of life and influence of geographical location, to inform decision-making.

코로나 시대 한부모의 자녀 돌봄 경험에 대한 합의적 질적 연구- 초등 저학년 부모를 대상으로

코로나 시대 한부모의 자녀 돌봄 경험에 대한 합의적 질적 연구- 초등 저학년 부모를 대상으로

Primary care physicians' experience of caring for children with parents with mental health illness: a qualitative study among French general practitioners and paediatricians

BackgroundParental psychiatric disorders can have a significant impact on child development and the parent-infant bond, with a high risk of attachment disorders. Early identification of difficulties in the parent–child relationship is essential to prevent consequences for the child. Childcare practitioners have a major role to play in this early detection process, through regular mandatory consultations during the first two years of a child's life. Thus, the aim of this study was to collect the experience of private practitioners in their care of children of parents with a mental health illness.MethodThis is a cross-sectional, observational, qualitative study. Data were collected by means of semi-structured interviews with eleven general practitioners and private paediatricians between February and July 2021 in Toulouse and its suburbs. We only included practitioners who had followed children of parents with a mental health illness. The interviews were recorded with the agreement of the participants, before being transcribed anonymously. The data were analysed with NVivo software using interpretative phenomenological analysis.ResultsThree main themes emerged from the results, which were further divided into several sub-themes. Addressing psychiatric disorders presents a risk for the therapeutic relationship. Practitioners express a need to preserve this relationship with the parent in joint care. Care is difficult and is permeated by the parents' emotional issues. Furthermore, practitioners face a conflict between their concerns for the parent–child bond and their desire not to stigmatise these families. They express a feeling of isolation in these follow-ups. This stressful care has a significant emotional impact on the doctors. Access to psychiatric training and multidisciplinary collaboration seem to be essential to improve the follow-up experience for practitioners, as these factors strengthen inter-professional connections.ConclusionPractitioners describe a parent-doctor relationship at risk, which is underpinned by the fear of care placement. This study illustrates the need to strengthen multidisciplinary work by promoting interprofessional exchanges, in order to improve the experience of practitioners in this care process. Addressing practitioners’ fear of discussing parental psychiatric illness is very important, so as not to delay the implementation of preventive actions that are likely to improve the developmental prognosis for children.

Phenomenological Study on the Lived Experiences of Mothers Caring for Their Pubescent Children with Developmental Disabilities

This phenomenological study explored and revealed the mothers' lived experiences of caring for pubescent children with developmental disabilities (DDs) in Korea. Data were collected from semi-structured individual in-depth interviews with nine mothers. This study adopted Giorgi's phenomenological analysis, through which a general structure of mothers' caregiving experiences with their pubescent adolescents with DD was formulated. The lived experiences of mothers caring for pubescent children with DD were clustered into four themes and nine subthemes from 19 meaning units: 1) Not being allowed to take delight in child's growth due to unbalanced growth pace; 2) Feeling marginalized along with the disabled child; 3) Feeling like being kicked out of society slowly and permanently; 4) Rearrangement of care direction and purpose. This qualitative study captured vivid experiences of mothers who care for pubescent children with DD by illustrating these mothers' detailed physical, emotional, and relational difficulties in their caring. Most importantly, this study found that it is puberty that these mothers come to clearly understand that their children and their disabilities are inseparable, and change the purpose and direction of childcare. The findings of this study can help health professionals better understand that these mothers are in urgent need for emotional support, and need to be included in nursing care. And this study can be used as base data for increasing disability awareness for both healthcare workers and public in general.

Nurses’ Attitudes Concerning Analgesia Administration for Pediatric Patients with Sickle Cell Disease in Jordan: A Cross-Sectional Study

BackgroundPain management of vaso-occlusive crises is a fundamental priority in the lifelong care of children and adolescents with sickle cell disease. AimThis study examined nurses' attitudes towards caring for children with sickle cell disease (SCD) and SCD pain management in those with vaso-occlusive pain. MethodA structured, self-reporting survey was provided to a convenience sample of 298 nurses across 10 hospitals serving Jordan's northern and middle regions. Descriptive and inferential statistics were applied for data analysis. ResultsMost nurses (77%) perceived their experience caring for children with SCD as positive. Many nurses (65%) felt frustrated about caring for these children during painful episodes. Participants identified workload and inadequate time as limiting their ability to address the analgesic needs of children with SCD. Receiving structured education specialized in pain management and more years of experience in nursing significantly predicted less hesitancy in administering opioid-based analgesia. ConclusionsThe results of this study provided further insight into factors that potentially contribute to vaso-occlusive pain crises frequently being poorly managed and inadequately addressed among pediatric patients. Nurses' attitudes and understanding of SCD pain management must be addressed to advance the clinical practice of managing pain in children with SCD.

Fathers' experiences of caring for children living with cerebral palsy: A qualitative study in a low resourced socioeconomic context, Ghana

BackgroundIn Ghana, little is known about fathers' experiences caring for children with cerebral palsy. PurposeThe purpose of this study is to explore a. the caregiving demand and burden on fathers of children with cerebral palsy and b. describe the caregiving consequences and coping strategies of fathers of children with cerebral palsy. Design and methodsThe study utilized an exploratory, descriptive qualitative approach with a sample size of fifteen fathers purposively selected. The study used a semi-structured interview guide to conduct a one-on-one interview with participants. The analysis performed was thematic and content analysis. ResultsThe results revealed complexities of care demand and burden; thus, meeting the child's needs resulted in physical and mental exhaustion, frequent hospital visits, and substantial financial implications for fathers. ConclusionsWe conclude that the family, particularly fathers, need support to embrace the challenging care roles as parents to children with cerebral palsy. It is evident that caring for children is mainly reserved for mothers in the African context. However, the demanding nature of care for a child with a developmental disability requires the involvement of both parents to meet the child's care needs and reduce the caregiver's care burden. Practice implicationsHealth professionals, particularly nurses must initiate and advocate for fathers' active participation in daily childcare. Tailored supportive care for families with children with disabilities in sub-Saharan Africa is required.

유아교사의 놀이신념과 전문성 지원환경이 놀이지원 실행에 미치는 영향

Objectives This study was conducted to examine the effects of early childhood teachers’ play beliefs and professional support environment on their play support practices. Methods The subjects of this study were 200 early childhood teachers working in daycare centers located in G city and J province. The play beliefs, professional support environment, and play support practices were evaluated directly by the early childhood teachers. The Pearson correlation analysis and regression analysis on the data collected were conducted by using SPSS WIN 29.0. Results First, there were significant differences in teachers’ play beliefs, professional support environment, and play support practices based on their background(age, childcare experience, academic background, working places). Second, the early childhood teachers' positive play beliefs had a significant positive correlation with their play support practices, but their negative play beliefs did a negative correlation with the play support practices. In addition, their professional support environment also had statistically significant positive correlation with play support practices. Third, early childhood teachers' professional support environment and positive play beliefs had significant effects on their play support practices. Fourth, the professional support environment had relatively greater effect on teachers’ play support practices than the positive play beliefs did. Conclusions This study provides more reliably understanding about effects of early childhood teachers' play beliefs and professional support environment on play support practices. And the results of this study suggest that we could develop early childhood teachers' play support practices by enhancing their play beliefs and professional support environment,

International Experience of Home-based Childcare in the Context of Comprehensive Three-child Education and Practical Analysis in Zhejiang

International Experience of Home-based Childcare in the Context of Comprehensive Three-child Education and Practical Analysis in Zhejiang

Lived experiences of mothers caring for children with burn-induced disabilities

Objective: Burn itself is a highly painful phenomenon, but even well after the burn wounds have healed, the resultant disabilities in children continue to tax the patience and the ability to care of the mothers of handicapped children. The present study was conducted to explain and interpret mothers' experiences in caring for children with burn-induced disabilities with the interpretive phenomenological method.&#x0D; Methodology: The research population included the mothers of children with burn-induced disabilities selected through purposive sampling. Face-to-face unstructured interviews were conducted and recorded with an interview guide, and data saturation was achieved after interviewing six mothers. Data were analyzed based on Dickelman’s method.&#x0D; Results: The analysis of the data extracted from the interviews revealed that mothers’ lived experience of caring for children with burn-induced disabilities could generally be divided into five themes: 1) psycho-emotional breakdown, 2) trying to maintain increasing distress, 3) life continuation in the meaning of care and compensation, 4) raising the child in the care bed, and 5) attention and trying to reach the goal despite the disability.&#x0D; Conclusion: Mothers of children with burn-induced disabilities experience a wide range of emotions, concerns, and experiences. It's important to acknowledge and understand these feelings to ensure the well-being of both the mothers and their children. &#x0D; Key words: Burns; Care; Disability; Mother; Phenomenology&#x0D; Citation: Shoghi M, Delfani F, Borimnejad L. Lived experiences of mothers caring for children with burn-induced disabilities. Anaesth. pain intensive care 2023;27(5):526−534; DOI: 10.35975/apic.v27i5.2308&#x0D; Received: July 23, 2023; Reviewed: August 16, 2023; Accepted: August 16, 2023

What do healthcare staff think about the quality and safety of care provided to children and young people with an intellectual disability? A qualitative study using the framework method of analysis

ObjectiveTo elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient...

A qualitative exploration of parental caregivers' experience caring for children who have survived medulloblastoma.

Approximately 70% of children diagnosed with a medulloblastoma will become long-term survivors. Medulloblastoma therapy frequently causes long-term morbidities in survivors, which places a considerable burden on parental caregivers. We aimed to explore the experience of parental caregivers caring for medulloblastoma survivors. We conducted a qualitative study using grounded theory thematic analysis. We used semi-structured parental caregiver interviews to explore family experiences, social circumstances, and family-reported impact within families of children who had survived medulloblastoma. Parental caregivers were recruited from specialized survivor clinics at two large quaternary centers in Toronto, Canada. Sixteen of 22 eligible families participated, and 20 parental caregiver interviews were completed. Survivors were a median age of 6years (range: 1-9years) at diagnosis, and were 9.5years (range: 5-12years) from treatment at the time of the interview. Three major themes and associated subthemes emerged: (i) parental caregivers described significant long-term challenges associated with their child's survivorship. Subthemes included medical treatment sequelae, school issues and behavioral concerns, and surveillance and access to care. (ii) Parental caregivers recognized the impact that their child's quality of life (QOL) had on both their personal and family QOL. Subthemes included parental QOL, parental mental health and coping, spousal relationships, and effects on the family unit as a whole. (iii) Parental caregivers reported experiencing conflicting emotions related to their child's survivorship status and long-term effects. Subthemes included feeling happiness with concurrent worry, fear, and stress, as well as concerns about the future. Parental caregivers of medulloblastoma survivors experience long-term challenges, with personal and family impacts. Further work is needed to improve care models and support systems for families with a child who has survived medulloblastoma.

The Relationship of Parenting Patterns with Nutritional Status and Development of Toddlers in Kuta Alam, Banda Aceh

Background: Parenting is a pattern of interaction between parents and children. More specifically, namely how the attitude or behavior of parents when interacting with children, Nutritional status is an important part of a person's health status. What babies eat from an early age is an important foundation for their health and well-being in the future and the development of toddlers is the toddler period, because at this time basic growth will affect the next child's development. In child development there is a critical period, where stimulation is needed so that the potential is developed. Objective: To describe the relationship between parenting style and nutritional status and toddler development. Materials and Method: analytic observational research. The design of this research is Cross Sectional which is carried out with a quantitative approach. Meanwhile, to complement the data obtained, qualitative data collection was also carried out, namely by conducting research on mothers of toddlers and toddlers. Assessment of the nutritional status of children was carried out using the WHO-Anthro software and then the ZScore value of the child was determined. The nutritional status variable (TB/A) is categorized into 2, namely: Normal, if the Z-score is -2 SD. Short, if the Z-score lies -3 SD to -2 SD. Result: Most of the heads of families have jobs in the private sector and only a small proportion (8.57%) work in the government sector as members of the military or civil servants, meanwhile the majority of respondents (mothers) are housewives (74.29%) and the rest working in the private sector. The nutritional care pattern score of the respondents ranged from 50 – 95.45 with an average of 70.11 which was included in the sufficient category. As many as 22 respondents (62.86%) had a nutrition care pattern score in the adequate category, 8 respondents (22.86%) were included in the poor category and only 5 respondents (14.28%) were included in the good category. Development indicates increased ability in more complex body structures and functions in regular and predictable patterns as a result of the maturation process. The developmental level of the majority of respondents (65.71%) is included in the appropriate category (based on the Developmental Pre-Screening Questionnaire) and the rest are in the doubtful category. Conclusion: Family parenting style which includes nutrition and health care has an effect on the nutritional status of toddlers in Kuta Alam. The characteristics of the respondents in general are housewives, with an education level at the basic education level, aged 25-29 years. experience of caring for children for 7.08 years and usually from the mother and family environment, with 1-2 children, 54.29% are nuclear families. Most of the respondents' nutritional status is in the normal category with an average Z-score = -1.8. Nutritional Status (Z-Score value) = -5.8 + 0.52 (pa. nutrition) + 0.004 (pa. health). Keywords: Parenting, Nutritional Status and Toddler Development