Experiences of parents of children with congenital nevi: A qualitative study.

Health literacy needs in the diagnosis and treatment of acoustic neuroma patients from timing it right theory perspective: A qualitative study.

Congenital melanocytic nevi (CMN) are often unexpected discoveries at time of childbirth or adoption. Understanding how parents/guardians cope with these visible birthmarks can help clinicians better care for children and their families. Using qualitative methods, we sought to categorize early family responses to CMN and identify approaches to better engage with parents early in their child's life. Semi-structured interviews were conducted within a broader study on shared decision making for families with children with CMN. Discussions included information on birth and early life experiences. Data was dual-coded, inductively and deductively, and analyzed with the Parker and Endler framework exploring emotion-, task-, and avoidance-oriented coping. Fifteen parents of 13 children were interviewed. Parents described all three categories of coping. Emotions ranged from guilt, to neutrality, to positive responses seeing their child's CMN. Stress was lower in families with prior knowledge of CMN. Dermatology referral provided an opportunity for learning, but also triggered worry for some families. Parents process and react to the diagnosis of CMN with a range of emotions and coping styles. Dermatologists can utilize open-ended questions to understand family emotions and provide families with tailored knowledge and resources. Early discussion of the diagnosis and family education are important support tools.

Parents of Children with Down Syndrome and Their Interactions with Pediatric Health Care Providers

This qualitative study was carried out with a phenomenological design to determine the life experiences of the parents of children with hearing loss. The study sample consisted of twenty parents, who did not have hearing loss, of children with hearing loss registered in a special education and rehabilitation center. The data were collected through in-depth interviews in Istanbul between December and January 2022. Colaizzi's phenomenological interpretation method was used for qualitative data analysis. It was determined that parents of children with hearing loss experienced anxiety, sadness, and happiness during diagnosis. They needed more information at first, but then they gained knowledge in the process, and it took work to accept this process. They stated that having a child with hearing loss requires more time, responsibility, and effort than other children. This situation affects their social life, and they experience interpersonal conflicts. When parents were asked how they coped, they said they did it through prayer, social support, or time to themselves. It can be recommended to apply psychosocial intervention programs to the parents of children with hearing loss, especially their mothers, from the first diagnosis process.

The role of surgery in the management of congenital melanocytic nevi (CMN) is controversial. Data on surgical outcomes and predictors of satisfaction remain scarce. An online survey was employed following worldwide recruitment of youth aged 14-25years (n = 44) and parents of children ≤ 18years (n = 249) with CMN to query patterns of treatment and satisfaction with and opinions about the benefits of surgery. In proxy-reports, 121 of 249 (49%) and in self-reports 30 of 44 (75%) participants underwent CMN excision. The most common reasons for surgery were psychosocial determinants, aesthetic improvement, and melanoma risk reduction. The overall satisfaction with surgical management was good, although no predictors for satisfaction could be identified. Higher current age of the child was found to predict decision regret in proxy-reports. Most participants indicated that having a scar is more socially acceptable than a CMN. Opinions differed on whether surgery should be deferred until the child is old enough to be involved in the decision-making process. Whether and when to perform surgery in children with CMN is a multifaceted question. Awareness of common concerns as well as risks and benefits of surgery are essential to ensure critical reflection and balanced decision-making.

ObjectiveThe aim of this qualitative study was to explore the experiences of Dutch parents of children with developmental dysplasia of the hip (DDH), treated with a Pavlik harness, during the...

The family plays an essential role in the adherence and effectiveness in the treatment of childhood obesity. Caregivers’ experience is fundamental for proper guidance. To describe the recommendations for the health-care team made by parents of children that are being treated for obesity. Cross-sectional and descriptive study with a qualitative approach and purposeful sampling. In the first semester of 2015, interviews were conducted with nine parents of children from 4 to 10 years old that were being treated for obesity ad who had at least three medical appointments in the previous year. The data analysis was based on the Grounded Theory Approach through open coding. The study was ethically approved and informed parental consent was obtained. The results were grouped in the following main categories: a) Health-care team-caregiver relationship, b) Health-care team-child relationship, c) Encouraging family participation, d) Encouraging therapeutic adherence in the child and e) Frequency of medical appointments. From the perspective of this group of parents of obese children, the health-care team should establish a close therapeutic bond with the children and their parents during the treatment process, in addition to encouraging family participation. The importance of developing therapeutic interventions that consider the perspective of the patient’s system is emphasized.

For parents of adolescents, deciding whether to allow their children to undergo electroconvulsive therapy (ECT) is difficult, even when they are fully informed. There is little in the nursing research literature about the experiences of parents during this challenging time. The purpose of this study was to explore the experiences of parents when deciding whether to use ECT in their adolescents with severe depression. We conducted an exploratory qualitative study at a Grade IIIA mental health center in Chengdu, Sichuan, China. A total of 20 parents were recruited, 13 of whom participated in formal face-to-face, semistructured interviews. The data were analyzed using Colaizzi's seven-step method to extract the final themes. This study determined that the decision-making experience of parents of adolescents with severe depression is characterized by the following four themes: decision-making anxiety, fear of ECT, feeling as if making decisions in a fog, and considering the feelings of teenagers. Parents face significant challenges in deciding whether to consent to ECT for their adolescent children. In this study, parents were influenced by the perceived risks of ECT, social stigma, treatment costs, media representations, and adolescents' understanding of ECT. Mental health nurses working in clinical settings can use these findings to gain a more comprehensive understanding of the decision-making process of parents of adolescents, improve parents' decision-making experience, and provide more individualized, person-centered care. These results can also guide the future development of targeted, nurse-led health education and other programs that better respond to the needs and experiences of parents.

Background: Activities of daily living (ADLs) refer to the ongoing behaviors that occur on a daily basis. Such behaviors include eating, cooking, bathing, social interactions (such as leisure activities, attending school or work, or assisting with chores), and other activities that one might routinely expect an individual to perform or participate in. Some of the major ADL tasks include personal hygiene, toileting, dressing, and eating. Researchers have documented delayed self-care performance in children with autism spectrum disorder (ASD). Parents report their child to have difficulties with feeding and toileting in particular. Objective: This qualitative pilot study endeavored to understand the difficulties faced by the parents of children with ASD in conducting their children's ADL. Study Design: Qualitative descriptive study was chosen for the research. Methods: The qualitative descriptive study included participants (n = 20) whose children were primarily diagnosed as ASD. Convenient sampling method was used for study sample calculation. The study included parents of children of age group between 5 and 9 years (mean ± standard deviation [SD]: 6.9 ± 1.57 months) with intelligence quotient of ≥80%. The study was conducted in a tertiary care hospital. The parents (fathers = 9 and mothers = 11) were given a semistructured questionnaire to understand difficulties faced by the parents of children with ASD (mean ± SD: 5.56 ± 33.6 months). Results: According to the study, it was observed that most of the parents have reported that their child had maximum difficulties in eating, followed by brushing and grooming and least for toileting. This study also found the priority list of difficulties in ADL. It was noted that early and proper training of the child gives good results in managing a child with ASD. Many parents reported that early training is beneficial. Conclusion: The outcome of this study shows the hierarchy of difficulties in ADL reported by the parents of children with ASD. This study also found that early ADL training gives good results in managing child with ASD.

Introduction: The frequency of natural disasters globally has increased, with Indonesia being a high-risk country for disasters. Children with disabilities and their families are more vulnerable during disasters. This study aimed to evaluate the experiences of parents of children with disabilities in Indonesia in relation to natural disaster preparedness. Methods: This qualitative descriptive study included participants from five regions. In-person and virtual interviews were conducted using a 12-question guided questionnaire focusing on children’s daily living conditions, parental disaster experiences, and current disaster preparedness. All data were analysed using thematic analysis. Results: Twenty parents of children with a variety of disabilities were included in the study. The parents’ experiences were categorised into four themes: (1) parents’ understanding on disasters, (2) addressing children’s needs in disasters, (3) function of physical and social environments, and (4) household readiness against disasters. Conclusion: Findings indicated that most parents do not have a specific plan regarding preparations for disasters. However, experiencing a disaster increased their awareness of the need to prepare for their children’s unique needs. Effective disaster preparedness for parents of children with disabilities requires consideration of socio-cultural, political, economic, and ecological factors. Understanding families’ disaster preparedness experiences highlights the essential role of occupational therapists in supporting parents of children with disabilities.

BackgroundPremature birth is a traumatic and stressful situation for parents who are immediately separated from their infant because of the newborn's need for specialized care. The staff of these units are in charge of following the principles of family‐centred care and practices for neonates at risk of neurodevelopmental disorders, including providing training to the family during their hospital stay and after being discharged.AimThe aim of this study is to explore the perceptions of parents of premature children at risk of neurodevelopmental disorders in regard to care, interventions and assistance provided during the first months of their child's life.Study DesignA qualitative descriptive study was carried out through individual interviews. The data analysis was conducted through a thematic analysis. The methodology and results were reported following the standards for preparing qualitative research reports and recommendations.ResultsTwenty‐one parents of premature children were interviewed. From these interviews, three main themes emerged: (i) parents' perspectives on preterm birth risk communication, (ii) navigating parental support and early interventions in preterm birth and (iii) perceptions of preterm birth protective and challenging factors.ConclusionsThe parents of premature children need to receive better communication about the care and interventions for their child, and it is necessary that health personnel are better trained in terms of management and administration of public resources. Strategies must be implemented that continuously guide parents on the follow‐up and care of their premature child not only during their first moments of life but also after being discharged from the hospital.Relevance to Clinical PracticeThis study highlights the need to improve care for parents with premature infants at risk, emphasizing the necessity for health care system reforms and support structures, allowing health care professionals to enhance attention and care.

Background: Generalized anxiety and oppositional defiant disorders are among the most common psychopathological disorders in pre-school children. We investigated the symptom rate and perception of the child's disorders in parents of preschool children with generalized anxiety disorder (GAD) or oppositional defiant disorder (ODD).Methods: The parents of preschool children (mean age 54.35 months, SD ± 11.60) with ODD, GAD, or typical development (TD) filled the Symptom Check List-90-Revised (SCL-90-R) and the Child Behavior Checklist- 1½−5 (CBCL 1½ 5). Parents and children's diagnoses were determined by clinical assessment.Results: The parents of children with ODD reported a symptoms rate higher than parents of children with GAD or TD on most of the SCL-90-R (Global Severity Index of mental distress, p = 0.010; Somatization, p = 0.002; Paranoid Ideation, p < 0.000; and Phobic Anxiety scales, p = 0.030).Conclusions: On the CBCL scales, the parents of the ODD group overestimated the children's problems, while parents of children with GAD reported mainly children's emotional difficulties. Parents of children with ODD seem to be psychologically more vulnerable than parents of children with GAD. Parenting programs might be tailored considering the child's diagnosis and family functioning.

Background: Parenting, a wonderful and rewarding experience, are often accompanied by high levels of stress, because of the difficulties, frustrations, and challenges that parents face in everyday life. This study examined the profile of Parenting and Family Adjustment among Parents of children and adolescents with Intellectual Disability and functional psychosis.&#x0D; Methods: This study was a cross-sectional hospital based study. The study samples were selected through purposive sampling technique. The sample size was 40 parent among which 20 parents of children and adolescent with intellectual disability and 20 parents of children and adolescent with functional psychosis taken from Erna Hoch Child and Adolescent Psychiatry Unit and Charak Outpatient Department, of the Central Institute of Psychiatry, Kanke, Ranchi. Parenting and Family Adjustment Scale used for the data collection. Data were analyzed by Statistical Package for Social Sciences (SPSS- 21 version).&#x0D; Results and Conclusions: The results indicated that parents of children and adolescents with functional psychosis reported higher mean in the subscales of Parental consistency, Corrective parenting, Positive encouragement, Parent child-relationship, Family relationship and parents of children and adolescents with intellectual disability reported higher mean in the subscale of Parental teamwork.&#x0D; Key words: Parenting, Family Adjustment, Psychosis, Intellectual Disability&#x0D; Â

Research into how bilingual parents of children with autism spectrum disorder (ASD) make choices about their children's language environment is scarce. This study aimed to explore this issue, focusing on understanding how bilingual parents of children with ASD may make different language exposure choices compared with bilingual parents of children without ASD. Semistructured qualitative interviews were conducted with 17 bilingual parents with a child with ASD and 18 bilingual parents with a typically developing (TD) child. Thematic analysis revealed that, in contrast to parents of TD children, parents with a child with ASD expressed concerns that a bilingual environment would cause confusion for their child and exacerbate language delays. This was particularly common for parents of children with lower verbal ability. Parents also identified potential benefits of bilingualism, particularly in terms of maintaining a close and affectionate bond with their child. Parents of children with ASD have concerns about bilingualism not present for parents of TD children, and these concerns are greater for parents of children with lower verbal ability. Future research in this area should take into account factors such as parent-child bonds as well as communication and language development.

Parents of children with autism spectrum disorder (ASD) face unique mental health challenges. Systematic mental health screening could identify parents in need of timely support; however, parental perceptions toward this have not been adequately explored. This qualitative descriptive study aimed to explore parental knowledge and attitudes toward mental health screening among parents of children with ASD in Singapore. Adult parents, who were primary caregivers of children with ASD aged between 2 and 18 years, were invited to participate in semi-structured individual online interviews. A purposive sample of 14 mothers was recruited from a tertiary paediatric developmental clinic between July and November 2024. Data were analysed using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist was used for reporting. Three themes identified as follows: (1) Understanding and Acceptance of Mental Health Screening, (2) Navigating Barriers to Mental Health Support, and (3) Shaping Effective Mental Health Services. Our findings indicate that while mothers recognise the benefits of mental health screening, stigma, lack of awareness and logistical challenges remain significant barriers. Effective implementation of mental health screening and follow-up support requires collaboration between healthcare, schools, government and community organisations to ensure a non-judgmental and accessible screening process.