Cognitive Functioning of Children with Severe Intellectual Disabilities and Children with Deafblindness: A Study of the Perceptions of Teachers and Parents in the USA and India

Background Teachers and parents play a very important role in providing valuable information for the assessment of children with severe disabilities. The needs of children, educational goals, and parental aspirations are similar irrespective of the part of the globe they live in. This study focused on the perceptions of teachers and parents of children with severe intellectual disability and children with deafblindness in the USA and India. Method A total of 125 teachers and parents from both countries formed the participants for the study. A questionnaire of 13 yes/no items with space for narrative comments was administered to participants. Results Analysis of the yes/no questions revealed that many of the perceptions of the participants were similar in both countries. Furthermore, the examples cited in the narrative were also similar across both countries. The teachers in this study tended to credit performance more readily than parents and teachers were more likely to report emerging skills and teaching strategies. The narratives highlighted the importance of functional assessment in the child’s natural environment over time to most fully capture the child’s present abilities and potential. Conclusions While detailed study with larger samples is necessary, the present study implies that it may be possible to develop assessment tools that can be used across countries for educational planning.     

Parental attitudes toward death education for young children

An exploratory study was conducted to ascertain perceptions of parents toward the role of early childhood educators in teaching young children about aspects of death education. A secondary objective was to contrast perceptions of parents with those of teachers toward death education for young children utilizing data from a previous study. Although parents of young children generally agreed with statements depicting the need for early childhood educators' self-development, communication with children, interaction with children's parents, and curriculum planning, they expressed significantly less support than teachers for death education as a part of early childhood education. Moreover, although parents acknowledged the importance of children acquiring an ecumenical understanding of and respect for others' beliefs about death, they did not wish teachers to share their personal philosophical or religious beliefs about death with young children. Parents also exhibited a more protective attitude than teachers relative to children's questions and expressed concerns about death.     

Mothers' perceptions of their disabled children: A review of the literature

A review of the literature indicates few generalizations that can be made about mothers' perceptions of their disabled children. Perceptions differ widely and are generally unrelated to the type of disability, although there are some indications that perceptions of severely disabled children tend to be more negative than those of children with less severe disabilities. Maternal perceptions usually are not accurate in the sense that they do not agree with the perceptions of rehabilitation professionals, teachers, or their own disabled children. Nevertheless, maternal perceptions are important since they influence how mothers behave toward their children. Rehabilitation personnnel should consider ways of influencing maternal perceptions so they are in the best interests of disabled children.     

Parents with psychosis and their children: experiences of Beardslee’s intervention

To meet children’s needs for information and support when a parent has a mental illness, Beardslee’s family intervention was implemented in Swedish psychosis care. The present study aimed to gain understanding of how parents’ with psychosis and their children experienced having taken part in Beardslee’s family intervention. The study followed COREQ guidelines. Semi‐structured interviews were conducted with 15 participants (8 parents with psychosis and 7 children) who had participated in the family intervention. Data were analysed with content analysis. Results showed that the parents perceived that the intervention had contributed to improved illness knowledge, communication, and understanding in the family. They also appreciated receiving support in finding an age‐adapted way of explaining their illness, but asked for structured follow‐ups in order to maintain communication. However, comparing parents’ and children’s interviews led to discrepancies in perceptions of the overall benefits of the intervention. In conclusion, parents with psychosis need continual support in talking to their children about their illness. Furthermore, discrepancies between parents’ and children’s interviews show the importance of multi‐perspective data collection when studying intervention effects.     

Parent and teacher perceptions of the impact of school nurse interventions on children's self-management of diabetes

Diabetes is a common chronic illness among school-age children. The school nurse collaborates with the student, parents, and teachers to help the child manage their diabetes effectively. Very little is known about the relationship between school nurse interventions and parent/teacher perceptions of the child's self-management. We examined this relationship in a sample of 69 school-age children who received case management from school nurses. Our findings suggest that teachers and parents do not always agree on how well a child manages their illness. When school nurses provide more education and counseling, parents are more likely to perceive an improvement in their child's self-management. Teachers are more likely to perceive an improvement when the nurse provides more classroom visits and includes the physical education teacher and guidance counselor. These findings suggest that the roles of educator, counselor, and collaborator are important for school nurses who provide care to school-age children with diabetes.     

Perceptions of mental handicap: a comparison of Australian and Irish school children

Australian secondary school children (N = 955) were surveyed concerning their perceptions of persons with mental handicap. Data collected related to reactions to meeting a person with disability, helping the handicapped person, responses to specific statements about handicapping conditions, causes of disability and the need for further information about handicaps. Results showed some parallels between Australian and Irish school children with both groups reflecting the positive impact.     

Perceptions of Support in Chinese Mothers of a Child with Intellectual Disability

Mothers of a child with intellectual disability face various challenges in parenting. However, most studies of support for parents of a child with intellectual disability have been conducted with families from Western cultural backgrounds. Little is known about support for families of children with disabilities in China. This study explored the perceptions of Chinese mothers of a child with intellectual disability about the support that they received. Semi-structured interviews were carried out with twelve mothers of a school-aged child with intellectual disability. The data were analysed thematically. It was found that Chinese mothers received support mainly from family members, social contacts, school teachers, and the government. Family conflicts, isolation from friends and community, unequal relationships with school teachers, and restricted access to information appear to be the main barriers for mothers to accessing and utilizing the available support. This research points to potential areas of difference between the experiences of mothers in China and those in Western countries.     

Parents' perceptions of children with chronic illness: a study of immigrant Chinese families

This article describes and discusses parents' perceptions of a children with a long-term health problems in 16 Chinese immigrant families and 15 Euro-Canadian families. These data are part of a larger study, the purpose of which was to explore the illness experience and help-seeking behavior of these families. The data show that the Euro-Canadian parents see the illness or disability as affecting only particular aspects of the child's life, while the child as a whole is seen as normal. The Chinese parents more frequently describe the illness as having global effects on many aspects of the child's present and future life. These differences in perception are discussed in relation to literature about Chinese culture and the experience of immigration. It is suggested that how a parent perceives a child's illness affects how a parent cares for the child and interacts with health care providers.     

Parents' beliefs about children and gun safety

This study sought to determine parents' beliefs about children and gun safety. A survey was sent to 230 parents of elementary age children addressing their beliefs about firearm storage, firearm safety training for children, and whether or not their child would handle a gun. Findings are based on the 82 returned surveys. Parents believed safe firearm storage was important to protect children. Only 22% of parents reported having a firearm in their home. However, of those reporting a firearm in the home, 85% did not practice safe gun storage despite reporting they believed it was important. These findings are supported by other studies that have found that parents have unrealistic perceptions about how their child will respond when a firearm is encountered. The only predictor of parents' incorrect perceptions about firearm safety training was the item "children will be safe if taught." This parental misperception provides further evidence that parents have unrealistic attitudes about children and guns.     

额肌悬吊术治疗重度先天性上睑下垂患儿的护理体会

目的探讨额肌悬吊术治疗重度先天性上睑下垂患儿的护理体会。方法选取我院收治的157例重度先天性上睑下垂患儿为研究对象,所有患儿均行额肌悬吊术,从术前准备、术中及术后并发症预防等方面进行护理。统计患者术后并发症发生情况及患儿家长对护理的满意度,评估患儿术后生活质量。结果患儿术后总并发症发生率为5.73%患儿及家长总满意度高。结论重度先天性上睑下垂患儿围术期的护理应注意加强对患儿的术前评估、针对性的心理护理,术后积极处理患儿的相关并发症,密切关注患儿病情变化,做好眼部护理,以便更好的促进患儿视力矫正,促进患儿康复。     

Levels of continence in children with cerebral palsy

Little is known about the levels of continence in children with cerebral palsy and what factors affect this. This study was conducted to determine levels of urine and stool continence in children with cerebral palsy in relation to their learning disability (LD) and mobility. The aim was to enable us to predict level of continence that can be achieved for these children with a given level of learning disability and mobility. Data were obtained from medical notes and by telephone interview on mobility, degree of learning disability and urine and stool continence of 55 children in Southern Derbyshire. Most of the children who have nil to moderate disabilities in learning and mobility were able to achieve a decent level of continence around a median age of three years. Therefore, their toilet training should be started at the usual age with ongoing support from parents/carers. In children with severe learning disability and severe immobility, the probability of continence is very slim after the age of eight years. After this age it may be better to divert resources to other aspects of care, for example nutrition and physiotherapy, to improve their quality of life.     

The perceptions of Taiwanese families who have children with learning disability

Aims and objectives. To explore the perceptions of families in Taiwan of living with a child who have learning disability and the parents perspectives on the cultural influences on their spiritual experiences. Background. Traditionally, the family is the most important unit of society, family functioning is a key field of interest among helping professionals who provide family interventions. Design. This study adopted qualitative research with semi‐structured interviews. The study analysis used content analysis which was a process of identifying, coding and categorizing the themes in the data. Methods. Semi‐structured interviews were conducted with 117 parents in their homes and were interpreted by using content analysis to extract key conceptual themes from the transcribed interview texts. Results. The findings revealed that the perceptions of families with learning disability children were wide‐ranging. The stressors did not occur in a fixed order, they were different in degree and importance from one family to another. Conclusions. The results showed that the experience of analysing qualitative data was extremely valuable for parents in that it aided their own understanding of the real‐life experiences of the parents and in coming to know the parents in a richer, more meaningful way. In doing so, nurses need to be aware of their own thoughts and environment without letting it influence others. Relevance to clinical practice. The nurse should demonstrate knowledge and understanding of the family's culture and be able to show respect for cultural difference to assess and identify culturally acceptable health‐care interventions.     

Telephone helpline for parents of children with congenital anomalies

Title. Telephone helpline for parents of children with congenital anomalies. Aim. This paper is a report of a study to evaluate how often and for what reason parents of children born with severe anatomical congenital anomalies use a 24‐hour telephone helpline, and to identify differences between callers and non‐callers. Background. Children born with severe congenital anomalies often remain dependent on medical care and technology after discharge. Adequate medical consultation in the home situation may lower parental burden. Method. Observational study of telephone contacts from 2000 to 2006 with parents of congenital anomaly patients discharged home after neonatal intensive care admission. Frequency of telephone calls was categorized per type of anomaly. Resulting interventions in terms of consultation and hospital admission were recorded. Finally, costs of personnel needed to provide 24‐hour telephone helpline availability were calculated. Findings. A total of 670 calls occurred outside office hours, from 34·4% of all parents; 23·7% of these calls concerned feeding problems. Parents of children with oesophageal atresia, urogenital malformation and congenital diaphragmatic hernia called most frequently (44·3–50·6%). Non‐callers were more often first‐time parents, divorced/separated or immigrants. Nurses handled 24·5% of calls by themselves and 20·2% of calls led to emergency room consultations resulting in 4·9% admissions. First contact took place at median age 3 months, last contact at median age 8 months. Total personnel costs amounted to €27,191 per year. Conclusion. A 24‐hour telephone helpline provides easy access to medical and supportive care for parents of children with congenital anomalies at relatively low cost. Nurses can effectively run this telephone helpline with paediatrician back‐up.     

白血病患儿对所患疾病的了解程度及其获知途径的质性研究

目的 探讨疾病缓解期的白血病患儿对疾病的了解程度,以及他们获得疾病相关信息的途径,以帮助护士和患儿家长选择恰当内容和途径与患儿沟通疾病信息.方法 采用质性研究方法,以半结构式的开放性访谈问卷对25例白血病患儿的陪住家长进行个体化的深入访谈,使用内容分析法分析资料.结果 急性白血病缓解期的患儿对其所患疾病有不同程度的了解,其获得疾病相关信息的途径与其心理成熟度有关.结论 医护人员和家长应根据患儿的年龄、患病时间长短及患儿思维水平选择告知疾病信息的内容,并且根据患儿的心理成熟度为其提供获得信息的途径.     

Parent perceptions of child vulnerability are associated with functioning and health care use in children with chronic pain

ContextThe extent to which parent variables are associated with the level of disability experienced by children with persistent pain has been an area of increasing research.ObjectivesTo evaluate the extent to which parent perceptions of their child’s vulnerability are associated with functioning and health care utilization among children with persistent pain. We also evaluated whether perceptions of child vulnerability contribute to an indirect relationship between parent distress and child functioning and/or child health care utilization.MethodsThe study sample comprised 87 patients aged 6–18 years and a parent attending a chronic pain clinic. Children completed questionnaires on functional limitations, and parents completed questionnaires on parent distress, perceptions of child vulnerability, and extent of the child’s pain-related health care utilization. Hierarchical regression and bootstrapping mediation analyses were used to test study hypotheses.ResultsPerceptions of child vulnerability were found to be clinically elevated in nearly half (46%) of parents/caregivers, and average child functional ability for the sample was substantially lower than healthy norms. Parent perceptions of greater child vulnerability were significantly associated with poorer child functioning and more child pain-related health care utilization regardless of child age, sex, and duration of persistent pain. Parent distress was found to be indirectly related to child health care utilization through parent perceptions of child vulnerability but directly related to child functioning.ConclusionParent perceptions of child vulnerability appear important for understanding levels of child functional limitations and health care utilization among children with chronic pain.     

Schools' capacity to help low-income, minority children to manage asthma.

This article describes the challenges and strengths of asthma management in 14 low-income, predominantly African American urban elementary schools serving more than 5,000 students. Asthma prevalence was 24.5%. Teachers, school principals, parents, and children described how asthma was managed at school. Data from classmates of students with asthma showed that they had moderate to high levels of information about the disease. Data from teachers indicated the great need for practical instruction on how they might effectively support a child with asthma in the classroom and on the playground. Principals raised concerns about expectations for the functioning of school staff and implementation of school policies especially related to asthma emergencies. Parents reported a range of problems their children face at school. Data from children with asthma showed that 75% believed asthma affected their school work. Findings from this study should be useful to school personnel, health providers, and others who assist children and their families to manage asthma at school. Data suggest that making school nursing services available is warranted, given the impact of asthma on the school community.     

An examination of the needs of parents of hospitalized children: comparing parents' and staff's perceptions

The needs of parents of hospitalized children have received some attention in the health literature, but few studies have compared parents' perceptions of needs with staff's ideas about parents' needs. The aim of this study was to examine differences between the perceptions of the needs of parents of hospitalized children held by staff - nurses, doctors and allied health staff, and parents in a 150-bed paediatric hospital in Sweden. The convenience sample comprised 132 staff - nurses, doctors and allied health staff and 115 parents of children admitted to all the wards except intensive care. Kristjánsdóttir's "needs of parents of hospitalized children" questionnaire (NPQ) was the instrument of choice and was modified slightly for use with staff. Results indicated significant differences in perceptions of the importance of different needs of parents, of how well they were being met in the hospital and how much help the parents needed to have them filled. Differences between parents' and staff's perceptions of the importance of parental needs were found in areas relating to psychosocial needs, but in general, in that hospital, the needs were being adequately met. The main differences between staff's and parents' results were in the degree of independence shown by parents in requiring help to have their needs met. This demonstrates either that parents are much more independent than appraised by staff, or, that parents are sometimes unaware of the level of assistance available.     

Living with type 1 diabetes: perceptions of children and their parents

Aim. To explore and describe the experiences of children and their parents living with type 1 diabetes mellitus from diagnosis onwards. Background. Type 1 diabetes mellitus is a psychologically and behaviourally demanding chronic condition that necessitates children and their parents taking extensive responsibility for managing the condition. Diabetes management involves maintaining a highly effective level of treatment to reduce the risks of short‐ and long‐term complications. Treatment is carried out in the context of daily life, but little research evidence is available about this experience. Design. A phenomenological study using conversational interview. Method. A purposive sample of 10 children, (aged 4–17) living with type 1 diabetes mellitus and their parents participated in this study. Participants were from different ethnic backgrounds and at differing lengths of time since diagnosis. Data were generated through conversational interviews and analysed using thematic analysis. Results. The central theme that was identified was ‘normal’. This was underpinned by four subthemes: transition, attachment, loss and meaning. The notion of ‘normal’ is dominant in the lives of these children and their parents because diabetes not only makes these families different, but also makes their pursuit of ‘normal’ more visible. Conclusion. These findings highlight that, despite different cultures, ages and lengths of time since diagnosis, families living with diabetes share very similar experiences. Understanding how children and parents create meaning and how this meaning influences their actual and potential health problems, is important if the provision of healthcare is to be effective in meeting their needs. Relevance to clinical practice. Conducting child‐ and parent‐centred qualitative research allows exploration of the perceptions and understanding of type 1 diabetes mellitus and the meaning ascribed by children and their parents who live with the condition. Diabetes is a lifelong, life‐threatening condition that has a significant impact on children’s and parents’ lives. Developing a deeper understanding of their lives and experiences will enable the delivery of nursing care to meet their specific needs.