Experiences Of Parents Research Articles

Teletherapy Services for Children with Hearing Devices: The Malaysian Parents Experience

Teletherapy Services for Children with Hearing Devices: The Malaysian Parents Experience

"I am the mother of the kind of child you dread having": Experiences of living with chronic sorrow among parents with a disabled child.

Chronic sorrow involves parents' enduring grief due to their child's disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents' chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being "different." Besides sorrow, the parents experienced intense ambiguity, guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.

Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States.

Although genetic testing is recommended for all children diagnosed with autism spectrum disorder (ASD) in the United States, it remains unclear how many parents have received and followed these recommendations. This study aimed to assess parental experiences and perspectives of healthcare providers' genetic testing recommendations. A total of 1043 parents of children with ASD from Simons Foundation Powering Autism Research for Knowledge completed an online survey. Only about one-third of the parents (34.2%) reported that their children's providers had recommended genetic testing. Factors associated with whether parents received these recommendations included the type of healthcare providers diagnosing ASD, parents' knowledge of genetic testing, the age of their children's diagnosis, and the presence of certain co-occurring medical conditions in their children. Our study also revealed that most parents (76.9%) who received recommendations had pursued genetic testing for their children. Adherence to the recommendations was associated with the characteristics of the parents (i.e., age and employment status) and children (i.e., gender), and their trust in the information from providers. The findings highlight the critical role of healthcare providers in facilitating genetic testing among families of children with ASD. Healthcare providers are recommended to increase their competencies and practice in providing genetic testing recommendations for ASD, assist parents in navigating testing challenges, and support parents through the testing process.

Rehabilitation services for childrenwith disabilities during the COVID-19 pandemic in the United Arab Emirates: Experiences of parents

Introduction: The Covid -19 pandemic brought changes in professional practice across the globe. Children with disabilities received rehabilitation services remotely throughout the lockdown periods to contain the virus in the United Arab Emirates. This paper explores the experiences of parents of children with disabilities who received remote rehabilitation services during the Covid-19 pandemic.Methods: A survey was developed by the study team in English and Arabic. Demographic data, characteristics of children, family circumstances, access to rehabilitation, use of assistive tools, financial and psychological implications on parents and children, and future use of remote therapy. It was deployed to the parents through the rehabilitation centers and was analyzed using descriptive statistics with frequencies and percentages.Results: The survey was completed by 239 parents whose children with disabilities received the rehabilitation services remotely mainly through telerehabilitation. The pressure and psychological impact on parents were high, reporting frustration (44.8%), and anxiety (59.8%), although (70.3%) recognized the importance of continued care for the child.Conclusion: Telerehabilitation was the means during the pandemic to ensure continued care in the UAE. In the future, remote rehabilitation will be appropriate in specific situations when there is limited or no access to the center. Future research should explore thecontinued use of telerehabilitation and its effectiveness.

Promoting Religious Moderation Among Bandung's Youth: Insights from SALIM Community

This research is aimed at finding out how Sahabat Lintas Iman (SALIM) organizes activities containing the value of religious moderation, analyzed using Anthony Giddens' theory regarding social movements. By using this sociological approach, the author tries to reveal the facts in the field regarding the socialization of religious moderation to the young generation of Bandung. The method used is descriptive by presenting the social phenomena obtained in narrative form. The type of data in this research is qualitative, equipped with data collection techniques through observation and interviews. In the research, data was found regarding the socialization of religious moderation carried out by the SALIM community to the young generation of Bandung. Researchers found three activities that have religious moderation values, namely: First, religious cafes are a place that combines enthusiastic young people with the experience of wise parents. Not just a meeting, but also an encounter that builds mutual understanding that inspires new perspectives. Second, the tour of places of worship is one of SALIM Bandung's programs in socializing religious moderation to the young generation of Bandung. The activities take place when one religion is celebrating its religious holiday. Third, the Interfaith Friends Meeting (PASINI) is a meeting between religious followers, without feeling low or high and without any secret agenda or goals.

“Being, Like, Their Parents Throughout Their Lifetime”—House Parents' Perceptions of Their Role in the Family‐Style Group Care

ABSTRACTBased on the concepts in Katz and Kahn's role theory model this qualitative research examines the role perception and experience of house parents in the family‐style group care, a type of out‐of‐home placement model for at‐risk children who cannot reside with their birth families. Semistructured interviews were conducted with 18 house parents (both men and women) to gain insights into their role perception and experience. The findings revolved around three central themes: motivation for choosing the role (search for meaning, previous exposure to the role and childhood experiences); role perception (parental and administrative); and experiencing the role, in terms of positive and negative emotions. The theoretical significance of this research lies in understanding the unique role perception of house parents, distinct from the corporate world. In comprehending the role of house parents, its nature and its impact on the well‐being of individuals in this role, social workers can improve house parent training and contribute to the mental well‐being of children growing up in these settings.

The effect of an enhanced fetal growth ultrasound protocol on pregnancy outcomes: A retrospective service evaluation within a single UK National Health Service centre between 2014 and 2022

Aim: Growth Assessment Protocol is a fetal growth initiative designed to improve antenatal detection of babies who are small-for-gestational-age and reduce stillbirths. However, its direct impact on pregnancy outcome and stillbirth rates is questioned. This service evaluation aimed to assess Growth Assessment Protocol’s influence on pregnancy outcomes at a National Health Service hospital. Method: Anonymous, maternity and ultrasound data, routinely acquired between 2014 and 2022 were extracted from clinical databases (Viewpoint, Euroking). Trends in maternity data and ultrasound scan volume were explored with descriptive statistics. Variables of stillbirth, antenatal small-for-gestational-age detection and scan volume were compared before and after Growth Assessment Protocol implementation. Associations between these variables were evaluated using Spearman’s rho. Results: The percentage of babies born small-for-gestational-age reduced by 0.3% across the evaluation period. Antenatal small-for-gestational-age diagnosis rose from 4.1% to 14.3%. However, the number of false-positive cases of antenatally diagnosed small-for-gestational-age increased fivefold from 2.2% to 11.5%. Although stillbirth rates remained consistent post-Growth Assessment Protocol, complex scan volume (e.g. number of growth scans using Doppler) increased annually. The peak incline coincided with the Growth Assessment Protocol implementation period (2016–2018). Complex scan volume was significantly associated with overall small-for-gestational-age detection (rho = 0.8, p =< 0.001), but not with stillbirth frequency (rho = −0.1, p = 0.4). Conclusion: Small-for-gestational-age detection increased following Growth Assessment Protocol implementation, although this was associated with a high false-positive rate and no reduction in stillbirths. The potential implications associated with clinical management, parent experiences and departmental workflow, alongside the benefits for stillbirth reduction, should be fully considered prior to the introduction of a new fetal growth initiative to the antenatal care pathway.

Challenges, coping strategies, and sources of support available to South African parents with children with autism spectrum disorder during the COVID-19 lockdown: a qualitative study

Parenting a child with autism spectrum disorder (ASD) is known to be complex and challenging and likely to be exacerbated under conditions of stress and uncertainty. We aimed to explore how parents experienced parenting their child with ASD during the initial COVID-19 lockdown in 2020. We also aimed to identify the coping strategies and sources of support available to them during this time. Using an exploratory qualitative design within an interpretivist paradigm, we interviewed 23 parents of children with ASD between the ages of 6 and 12 years. Parents were recruited from an online support group for ASD in South Africa. Interviews were semi-structured and transcribed verbatim for thematic analysis, using ATLAS.ti. We identified five themes: (1) The experience of communicating lockdown rules and disease containment measures to children, (2) Consequences of disruption to routine, (3) Parenting and interpersonal relationships in conditions of confinement, (4) Help-seeking and sources of support, and (5) Finding ways to cope amid a crisis. The findings demonstrate that the initial COVID-19 lockdown placed parents of children with ASD under considerable stress. Disrupted routines and interrupted access to financial, psychological, social, and educational support during the initial lockdown period exacerbated parenting experiences. This study highlights the importance of providing parents of children with ASD strategies to communicate significant change and various forms of support to navigate the negative effects of routine disruptions during conditions of uncertainty and crisis.

Lived Experiences of Parents of Children Having Type-I Diabetes Aged 6 to 12 Years

Type I diabetes is chronic illness which change the life styles of parents, children as well as the entire family. Parents faced many challenges such as care, management (insulin administration, diabetic diet, blood glucose monitoring) and treatment cost. Objective of the study is to explore lived experience of parents of children having type I diabetes. A qualitative phenomenological study design was adopted, and total eleven parents (8 mothers and 3 fathers) were selected as participants by using non probability purposive sampling procedure. Data was gathered by using in-depth interview. The huge information was reduced to smaller statements by grouping similar responses to get actual meaning which were coded, categorized and organized to sub themes and themes. Findings revealed that parents had experienced so many ups and downs emotional feelings during the journey of treatment. They experienced nature of type I diabetes like treatment need for the whole of life, hardship during diagnosis process, facing the diabetes complications, financial crisis and need for treatment in emergency situation. The study also revealed that parents felt permanent impact from their child’s previous health condition and disruption of family unit but they were hopeful about their children’s future consequences. They struggled for supporting and caring their children’s lives at all times in the best possible ways. They learnt to live with children having Type-I diabetes. Parents suggested to launch awareness programs to educate school teachers, staffs and health worker for early diagnosis.

Sexual experiences and behaviours of the parents in the Avon Longitudinal Study of Parents and Childhood (ALSPAC)

The aim of this data note is to describe the sexual experiences, functioning and behaviour data collected from the parent cohorts of the Avon Longitudinal Study of Parents and Children (ALSPAC) occurring during their childhoods and up to 19 years after the birth of the index child. ALSPAC is an ongoing birth cohort which enrolled 14,541 pregnant women living in Avon, an area of southwest England, with expected dates of delivery between April 1991 and December 1992 inclusive. It continues collecting data on these mothers (age range at delivery <16–41 years), their partners (age range at delivery <16–65), and their offspring, so far resulting in 100,000+ phenotype variables. During the index pregnancy the mothers were asked (and at 8 months post-delivery for partners) about their early sexual experiences to identify sexual abuse, the age at which an event first occurred, along with the type of perpetrator (e.g. stranger, relatives, boy/girlfriend). There are also data on these parents’ experiences of sexual assault as adults. Both parents were asked also about sexual abuse within a battery of questions identifying Adverse Childhood Events (ACEs). Further longitudinal data described here includes satisfaction with sexual and non-sexual sides of their relationship; sexual functioning; and at seven years post-delivery, both parents were asked to describe their sexual orientation as well as the sex of their partners. These data provide the ability to compare generational differences between parental sexual experiences and behaviours with those of their offspring, as well as allowing comparisons with other longitudinal surveys where similar (or identical) information has been collected such as the National Survey of Sexual Attitudes and Lifestyles (NATSAL-3). This paper forms a companion to a further data note describing similar data collected on the offspring cohort.

Support Experiences and Wishes of Bereaved Parents After the Loss of Their Child to Cancer.

The death of a child has a tremendous impact on parents' lives. The experience of parents who have lost a child to cancer may differ from other bereavement experiences, including other childhood and adulthood causes of death, because of the uncertainty of the prognosis, the aggressive treatment, and the potential for regret about treatment decisions. Bereavement care remains scarce, and effective interventions to meet the diverse needs of parents have not been defined. To provide insights on bereaved parents' experiences, their needs, and wishes of support following the loss of their child to cancer. We conducted 18 qualitative, in-depth, semi-structured interviews with 23 bereaved parents (seven fathers, 16 mothers), and used reflexive thematic analysis to analyze the data. Parents received both informal and professional support. Regarding informal support, parents expressed a high level of ambivalence rooted in grief illiteracy. Parents also recognized their own struggles to express what forms of informal support they would have liked to receive. Support provided by healthcare professionals, institutions, and organizations involved in the children's care or in bereavement was inconsistent due to personnel time constraints, interpersonal relationships, or disruptions due to the COVID-19 pandemic. These factors could result in parents not having access to certain forms of support or not receiving long-term support. Improving grief literacy may strengthen informal support and make discussions of grief and death less taboo. Institutional policies, training, and networking may help to ensure that support provided by healthcare professionals, institutions, and organizations is less vulnerable to inconsistencies.

Study protocol for a multicenter randomized controlled trial on simulation-based communication training for pediatric cardiology trainees (SIMUL-CHD)

BackgroundEffective physician-patient communication is crucial to compassionate healthcare, particularly when conveying life-altering diagnoses such as those associated with congenital heart diseases. Despite its importance, medical practitioners often face challenges in communicating effectively. Because of these gaps, we aim to introduce a simulation-based training protocol to improve pediatric cardiology trainee’s communication skills. This study will be conducted in collaboration with associations supporting caregivers of children with congenital heart disease. It strives to demonstrate how specific training programs can efficiently foster humanistic, patient-centered care in standard medical practice.MethodsThis multicenter, open-label randomized controlled trial will be conducted in pediatric cardiac units and simulation centers of across 10 universities in France. The study population comprises pediatric cardiologists in training (including pediatric cardiac fellows or specialist assistants). The SIMUL-CHD intervention will consist of simulation-based training with standardized patients, focusing on improving communication skills for pediatric cardiology trainees during diagnostic counselling. Patients and caregivers have been recruited from a National Patient Association named “Petit Cœur de Beurre”. The primary outcome is the quality of physicians’ communication skills. The evaluation committee, which will review video recordings of the sessions, will be blinded to which participants received simulation-based training (group of interest) and which received theory-based training (control group). Secondary outcomes are the effect of SIMUL-CHD on empathy and anxiety levels in young pediatric cardiologists. Baseline scores pre and post-intervention will be compared, and skill improvement resulting from the intervention measured.DiscussionSimulation-based training has proven efficacy in teaching technical skills in various scenarios however its application to communication skills in pediatric cardiology remains unexplored. The involvement of experienced parents provides a unique perspective, incorporating their profound understanding of the emotional challenges and specific hurdles faced by families dealing with congenital heart disease.Trial registrationThis trial is registered with the OSF registry (registered https://osf.io/ed78q).

Parent experiences with genetic testing for pediatric hearing loss.

The purpose of the current study was to assess parent perceptions and experiences of genetic testing, as well as barriers for not undergoing testing in a sample of families of children with hearing loss. A 44-item questionnaire, The Parent Perception of Genetic Testing Questionnaire developed by the research study team was administered. Participants were recruited from a pediatric otolaryngology/audiology practice and social media. A total of 146 parents of children with hearing loss participated. Approximately 47.6% of the children in our sample underwent genetic testing, 44.8% did not, and 7.6% of parents were unsure. For those that did not undergo testing, reasons included: unaware (6.2%), not interested (8.9%), cost (8.9%), time (3.4%), fearful of results (2.7%), and never offered (15.1%). For those that did undergo testing, over half of the parents reported that they did not receive counseling before (55.1%) and 41.7% reported they received counseling after the testing. Furthermore, parents were confused about the results with 18.3% reporting they were Very Confused, 28.3% Somewhat Confused, 20% A Little Confused, and 33.3% Not Confused at All about the variant of uncertain or unknown significance. Notably, less than half of parents (43.4%) remembered what they were told about the mode of inheritance. Overall, our study highlighted the low adoption rate of genetic testing and lack of integration into standard of care for otology/audiology practices. Collaboration between hearing healthcare professionals and geneticists is warranted to determine how to reduce barriers to access while improving pre- and post-counseling.

The texture of parental experiences with online learning: the interplay of norms, relationships, and emotions

This article reports findings from a mixed-method study investigating parents’ perspectives and experiences in navigating their children’s online learning during the COVID-19 pandemic. The study involved surveys of parents (n = 775) and interviews (n = 32) conducted in eight primary schools in Hong Kong. Statistical analyses revealed that parents’ perceptions of online learning (PPOL) were positively affected by their self-efficacy in providing online learning support, their expectations for parent-teacher communication, and their satisfaction with schools’ support. Conversely, increased levels of parental engagement and stress, and the need for regular school updates negatively affected PPOL. Qualitative findings showed that parents’ perspectives were influenced by experiences tied to their normative role expectations and their perceptions of teachers and schools, which subsequently shaped their emotional responses to online learning. These findings offer nuanced insights for developing policies and practices aimed at better supporting parents’ engagement in the digital era.

Exploring parents’ experiences of working with educational psychologists to support their autistic daughters

ABSTRACT Understanding of autism has changed considerably in recent years, with growing awareness of the under-recognition of autism in girls. Research has sought to explain the under-diagnosis and experiences of autistic girls, and to provide recommendations for support. Research has also highlighted that parents are often dismissed by professionals; thus, it is crucial that the experiences of parents are represented in the literature. This study explored parents’ experiences of working with educational psychologists to support their autistic daughters. A single embedded case study design and semi-structured interviews were utilised to explore the experiences of five parents of autistic girls. Interviews were analysed using a deductive-inductive approach to thematic analysis. Nine themes and 22 subthemes were identified which highlighted what parents found to be helpful/unhelpful, and areas for development, when working with educational psychologists to support their daughters. The findings are discussed in relation to the existing literature and implications for professional practice are highlighted.

When thinking about pain contributes to suffering: the example of pain catastrophizing

Abstract The extensive literature on the potent role negative thoughts about pain have on the experience of pain and pain-related suffering has documented associations with important neurobiological processes involved in amplifying nociceptive signals. We focus this review on pain catastrophizing (pCAT)— appraisals of pain as threatening, overwhelming, and unmanageable— and review the evidence that these thoughts are learned in childhood through experience and observation of others, particularly caretakers and parents. For children who have learned pCAT, repeated exposures to pain over time activate pCAT and likely contribute to further amplification of pain through changes in the neurobiological pain regulatory systems, which overlap with those regulating the stress response. We propose that repeated pain and stress exposures throughout childhood, adolescence, and into adulthood alter the neurobiology of pain via a repetitive positive feedback loop that increases risk for heightened pain sensitivity over time with repeated exposures. At some point, often precipitated by an acute episode of pain and possibly influenced by allostatic load, pCAT contributes to persistence of episodic or acute pain and exacerbates pain-related suffering. This developmental trajectory is not inevitable, as the impact of pCAT on pain and pain-related suffering can be influenced by various factors. We also present future directions for work in this area.

Paternal adverse childhood experiences are associated with a low risk of atopy in the offspring.

Parental adverse childhood experiences (ACE) might affect the offspring health through intergenerational inheritance. The aim of this study was to investigate how paternal ACE associate with offspring sensitisation and allergic rhinitis (AR). The study included 590 Finnish father-child dyads from the FinnBrain Birth Cohort Study. Outcomes were offspring sensitisation against allergens and AR at age 5.5 years. Paternal ACE up to 18 years were assessed using the Trauma and Distress Scale (TADS) with the lowest quarter as the reference group. Of the children, 317 (54%) were males. Sensitisation occurred in 162/533 (30%) and AR in 122/590 (21%). Paternal TADS (median 17 points; interquartile range 11-27) was inversely associated with the risk of sensitisation. Children whose fathers scored the highest quarter had the lowest risk of sensitisation (adjusted odds ratio 0.42; 95% confidence interval 0.24-0.75), followed by those in the second highest quarter (0.58; 0.34-0.99). The association between the highest quarter and reduced risk of AR was similar. Paternal ACE were associated with a low risk of offspring sensitisation and AR, suggesting paternal childhood stress might influence immune responses in their offspring.

Lived Experience of Parents with Technology-Dependent Children: A Phenomenological Study

Caring for technology-dependent children significantly impacts the family unit, a topic that has not been researched in Portugal. Understanding this impact can help nurses to improve their interventions. This study aimed to describe the lived experiences of parents with technology-dependent children using a qualitative descriptive design. We applied Giorgi’s approach to analyze 10 individual semi-structured interviews with parents recruited through a children’s hospital in Portugal. Our analysis identified two major themes: (1) Discovering a new parenthood: parent and caregiver, comprising two subthemes: Family reorganization and Learning to use a medical device; (2) Reconciling daily life with the needs of the technology-dependent children, comprising two subthemes: Importance of support systems and Experiencing difficulties. These results indicate that parents experience a wide range of concerns and challenges in managing medical devices, starting from the moment the need for a device is communicated and continuing through the process of learning and providing care. This journey involves significant changes in family dynamics and is marked by sacrifice and adaptation, supported by family, formal support systems, and healthcare professionals. Our findings provide valuable insights into the vulnerabilities faced by these parents and highlight how nursing care can enhance the quality of care for these families.

OP053 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UNPLANNED INPATIENT TRANSFERS TO THE PEDIATRIC INTENSIVE CARE UNIT: A QUALITATIVE DESCRIPTIVE STUDY OF PARENTAL EXPERIENCES

OP053 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UNPLANNED INPATIENT TRANSFERS TO THE PEDIATRIC INTENSIVE CARE UNIT: A QUALITATIVE DESCRIPTIVE STUDY OF PARENTAL EXPERIENCES

Parents Perception on use of Antibiotics in Children

Objective: To determine parents’ perception on use of antibiotics in children. Study Design: Cross-sectional study. Place and Duration of Study: Department of Paediatrics, Combined Military Hospital, Kharian Pakistan, from Jul 2022 to Mar 2023. Methodology: Fifty parents aged 18-50 years were included in the study. Their parity, education levels, knowledge and attitudes on antibiotic use, including basic concepts of antibiotics, indications of antibiotic, administration of antibiotics, Antimicrobial Resistance and other side effects; parental experiences and practices around buying antibiotics without a prescription and parental experiences regarding using antibiotics to treat their children themselves were noted. Result: Sixteen respondents (32%) were male and 34(68%) were female. It was found that most parents used Cefixime 28(56%), followed by Amoxicillin, and Azithromycin. Twenty-three (46%) participants stated that antibiotics could cure infections caused by viruses. Eighty-eight percent participants knew that antibiotics should only be taken according to doctor’s prescription. Almost half of parents believed that antibiotics should be withdrawn as soon as the symptoms disappear. About 26% of parents believed that antibiotics could prevent the common cold. Thirty-six (72%) parents agreed that overuse of antibiotics exists in Pakistan. Conclusion: Poor knowledge or understanding of antibiotic usage persists among parents in Pakistan. A doctor's prescription for antibiotics may have an impact on how parents use those medicines on their children.