Parenthood: towards a framework for education and support

Whilst parent education is attracting increasing interest and debate, a review of current initiatives in schools, in antenatal services and in support services for families reveals considerable confusion with regard to aims, objectives and methodology. Schemes and services tend to be limited in number, piecemeal and uncoordinated, with little thought being given either to content or to the most appropriate stages of an individual's life at which to offer education, preparation, support, or where necessary, intervention. A more coordinated approach is suggested, offering parents and prospective parents a range of services which build upon their own parenting skills, rather than undermining their self-confidence with 'professional expertise'.     

Navigating disability and related services: stories of immigrant families

Cultural beliefs, values, language differences, and unfamiliar educational infrastructures and practices can impact immigrant parents’ capacity to support their children with disabilities in their new country. This study presents perspectives of disability and experiences with special education services based on interviews with eight immigrant parents of children with disabilities from four countries. Results indicate that the process for accepting, or not accepting, that their child has a disability differed across cultural contexts. Additionally, immigrant parents encounter diverse labelling practices and have varying levels of participation in special education services. Moreover, immigrant families who are refugees have differential access to services and a more limited cultural perspective of their heritage country than families who came to the USA directly from their heritage country. These results can assist professionals in rethinking policies and practices to more effectively establish partnerships with culturally and linguistically diverse families.     

Parental views about services for children attending schools for the emotionally and behaviourally disturbed (EBD): a qualitative analysis

AIM: This study examines the views of parents of children attending schools for the emotionally and behaviourally disturbed (EBD). The study aims to gain an understanding of the journey through the educational system taken by these children and to explore their families' experience of services along the way. METHODS: Thirty parents of 25 children attending primary and secondary EBD schools in three South London boroughs took part in focus group discussions. Parents were asked about their experiences of services, including educational, health and social services, as well as how they thought services should be improved. RESULTS: Qualitative analysis identified a complex web of individual, professional and organizational factors which contributed to social exclusion of children with EBD problems and their families. These factors included children receiving inadequate education because of long periods of exclusion or inappropriate placements whilst waiting for a statement of special educational needs. Parents also felt personally socially excluded because of lack of childcare provision out of school hours. Many parents felt that their children did not fit into services and were constantly being passed on to other professionals. The analysis identified aspects of services that promote social inclusion and provide support to families, including acceptance of children into EBD schools, help from voluntary organizations and support from other parents with children with EBD problems. Parents particularly stressed the value of working in collaboration with professionals to achieve shared goals. CONCLUSION: EBD schools provide a valuable resource for parents. However parents often lack emotional and practical support in coping with their children's complex needs. Agencies need to improve communication and joint working to provide effective services for these families.     

中国父母如何看待向未婚年轻人提供避孕服务——来自中国8个地区的调查报告

为了解我国父母对向未婚年轻成人提供性和生殖健康服务的观念和态度,采用小组访谈会的方法,分别在8个省市共组织了8组未婚年轻成人的母亲和8组未婚年轻成人的父亲进行调查。结果:不同地区的父母对婚前性行为虽然均不赞同,但表现出一定的宽容和理解。父母们普遍赞同向未婚年轻人开展性教育,认为其利大于弊,但对于是否可向未婚年轻人提供避孕服务,有较大分歧意见。大多数父母认为应以教育为主,根据具体情况提供避孕措施。建议父母认识并承担对子女进行性教育的责任。     

Psychosocial Services for Children and Adolescents With Hemophilia and Their Families: Result of a National Survey

Seventy-one providers at 53 hemophilia treatment centers were surveyed concerning their patient populations, types of problems encountered, type of psychosocial services provided, and obstacles to service delivery. Respondents, who were social workers, nurses, and psychologists, reported that they spent more time providing direct services for illness-related problems compared with general psychological problems. The most time-consuming problems included problematic child-adolescent adjustment to hemophilia (21.6%), parental adjustment to hemophilia (20.5%), child-adolescent adjustment to HIV (17.4%), and parental adjustment to HIV (14.0%). Practitioners utilized a wide range of services to address clinical problems, such as providing information and support to parents; assessment of child, parent, and family adjustment; psychotherapy for children and parents; and identification of community services and referral contracts for families. The families' distance from the center was rated as the most significant obstacle to delivery of psychosocial services. Findings have potential implications for planning for psychosocial services for children with hemophilia and their families as well as for support and education of service providers.     

Satisfaction with formal support and education for children with autism spectrum disorder: the voices of the parents

INTRODUCTION: The aim of the present study was to identify and describe factors associated with variations in the level of parental satisfaction with formal support and education for children with autism spectrum disorder (ASD) in Flanders. METHODS: Participants were recruited by a mailing from a diagnostic centre for pre-schoolers and by advertisements dispersed in the Flemish parent organization for ASD and in services and special schools. The sample consisted of 244 parents of children with ASD (age range: 2.69-17.81 years, male/female sex ratio 4:1). The data were collected using a questionnaire on experiences with education and support, which was compiled for the purpose of this study. The data resulting from the questionnaire were supplemented with information obtained from semi-structured in-depth interviews with a stratified sample of 15 parents. RESULTS AND CONCLUSIONS: The study revealed that parents experienced difficulties with the diagnostic process, with support and education provided by mainstream settings and with the accessibility of autism-specific service provisions. Conversely, parents reported to be satisfied with the quality of autism-specific support and education. Predictors of overall satisfaction were parental involvement in formal support, knowledge of available service provisions and time between first consultation and final diagnosis. Practical implications of the results are discussed.     

学龄前儿童家长意外伤害知识-态度-行为及其相关因素分析

目的:了解学龄前儿童家长意外伤害知识、态度、行为的现状,分析其影响因素。方法:采用问卷调查方法对228名学龄前儿童家长进行调查。结果:家长意外伤害的平均知识得分为(72.65±0.6)分;态度得分(68.54±1.08)分;行为得分(72.77±0.86)分。家长的文化、职业、家庭人口数、父母关系、管教方式对意外伤害知识得分的影响显著,家庭收入、儿童年龄对家长态度得分影响显著。家长从社区宣传中获得知识只占14.9%。结论:家长对儿童意外伤害的KAP是相互关联的。家长意外伤害知识欠缺,随着儿童年龄增长,家长侥幸心理增加,社区卫生工作者应加强儿童意外伤害的健康教育。     

Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia

There has been increasing interest in the way parents cope with childhood chronic illness and a shift away from merely describing the 'burdens' of care. An emphasis on coping by introducing ideas such as co-ordinated, accessible and appropriate service delivery as well as empowerment raises important policy and practice issues for public health. This paper, by drawing on qualitative material from a project evaluating service support to families caring for a child with a haemoglobinopathy, examines how parents cope with their caring responsibilities. First, it discusses the general literature on how carers respond to their role, before examining the specific literature dealing with the response of parents who look after a child with a haemoglobinopathy. Second, it presents the empirical accounts of parents who care for a child with a sickle cell disorder (SCD) or thalassaemia within the context of this broader literature. The paper concludes that all parents found caring stressful and demanding, but accept that they have to cope with the situation for the sake of the child. Parents' contact with services is an especially important contributory factor to their ability to cope and parents described how services can both hinder and support their caring role. Appropriate professional support can help reduce stress and facilitate coping by offering information, financial help and emotional support. Unsympathetic responses from professionals, or their incompetence, however, meant that many parents identified service provision as part of the problem, potentially undermining their ability to come to terms with the condition.     

DEVELOPMENT OF AN EDUCATION PROGRAM FOR PARENTS OF CHILDREN WITH CANCER

A structured education program for parents of children with cancer has been developed and has undergone pilot testing. Content included both medical and psychosocial materials. The parent education program supplemented the existing educational and emotional support services of a large, childhood cancer treatment center. Written materials, self-instructional exercises, lectures, visual aids, and small group discussions were incorporated into the program. This variety of topics and teaching techniques was appealing to parents and appeared to enhance learning. Parents enthusiastically attended the program pilots, gained and retained the new information, and appeared to benefit emotionally from their participation.     

'Providing more scaffolding': parenting a child with developmental co-ordination disorder, a hidden disability

Background Few studies exist reporting the experiences of parents of children with developmental co-ordination disorder (DCD) a common disorder with a prevalence of 1.8-6%. DCD is characterized by poor motor co-ordination, not caused by a general medical condition, but significantly affecting daily living. This study explores the experiences of parents living with a child with DCD in obtaining a diagnosis; the impact of the diagnosis on parenting and the effect on parents as individuals. Methods Semi-structured interviews with a purposive sample of 15 parents of children with DCD data were recorded and then transcribed. Data were analysed using a coding framework and themes identified similar to Attride-Stirling (2001, Qualitative Research, 1, 385-405). Findings DCD was an all-encompassing condition that dominated all aspects of family life and was a 'hidden disability'. Parents were frustrated by the poor knowledge and expertise of health and education professionals working with children with DCD and the lack of good quality accessible information and support services. Parents became by default the 'expert' on DCD for schools and other services; they were advocates for DCD and their own children. They provided additional support for longer to their child with DCD and had concerns for their future. Parenting a child with DCD was frustrating, exhausting, guilt-ridden as well as rewarding. There was little available time to provide for the needs of other family members. Conclusion A better-trained, knowledgeable workforce would redress the balance for families with DCD by providing better information, support and advocacy freeing parents to parent their families.     

Getting the run around: accessing services for children with developmental co-ordination disorder

BACKGROUND: Accessing services for children with developmental co-ordination disorder (DCD) is frequently difficult for parents who have to navigate both health and education systems to find a diagnosis and appropriate interventions. METHOD: A qualitative study design incorporating a phenomenological perspective was utilized to understand the nature of the experiences of these parents in attempting to access support for their children with DCD. Twelve parents, whose children attended the Kids Skills Clinic at the University of Western Ontario and were identified as having DCD, were interviewed by the second author. Interviews were transcribed verbatim and analysed using constant comparative method. Member checking, peer checking and code-recoding were carried out to enhance rigour in data analysis. RESULTS: A number of themes emerged focusing on the common problems experienced leading to occupational therapy referral. Parents' journeys to seek and access services for their children with DCD were characterized by a sense of maternal knowing, experience of frustration, trivialization of the problem, a sense of 'going it alone', and 'getting the run around'. CONCLUSIONS: Implications for health and educational professionals working with children, in terms of recognition of DCD and referral for services, are described.     

Challenges Faced by Refugee New Parents from Africa in Canada

This study examines challenges faced by refugee new parents from Africa in Canada. Refugee new parents from Zimbabwe (n = 36) and Sudan (n = 36) were interviewed individually about challenges of coping concurrently with migration and new parenthood and completed loneliness and trauma/stress measures. Four group interviews with refugee new parents (n = 30) were subsequently conducted. Participants reported isolation, loneliness, and stress linked to migration and new parenthood. New gender roles evoked marital discord. Barriers to health-related services included language. Compounding challenges included discrimination, time restrictions for financial support, prolonged immigration and family reunification processes, uncoordinated government services, and culturally insensitive policies. The results reinforce the need for research on influences of refugees’ stressful experiences on parenting and potential role of social support in mitigating effects of stress among refugee new parents. Language services should be integrated within health systems to facilitate provision of information, affirmation, and emotional support to refugee new parents. Our study reinforces the need for culturally appropriate services that mobilize and sustain support in health and health related (e.g., education, employment, immigration) policies.     

Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome

Background   International research in recent years has begun to focus on the medical problems of individuals with intellectual disabilities and on family stress in accessing health services for persons with developmental disabilities. Less is known about the needs of individuals in different diagnostic groups, or about their experiences of systems of care. Therefore, we report the results of focus groups with parents of children or adults with fragile X syndrome, autism or Down syndrome.
Methods   Semi-structured group interviews with parents of children, youth or adults from each of three diagnostic groups probed perceptions of challenges and successes in obtaining and negotiating healthcare services in Ontario, Canada.
Results   Parents described diverse barriers to care, the need for advocacy in securing services, perceptions of service delivery and the role of healthcare professionals in regulating access to a wide range of services. Diagnostic services represented one area of central concern to parents from all three groups.
Discussion   Focus group data yielded a wide range of concerns. Suggestions for enhancing the system included expanding syndrome-specific education for medical students and health professionals and creating a centre that could offer service-related information for parents.     

Preschoolers with autism spectrum disorders: the impact on families and the supports available to them

As more children are diagnosed at a younger age with Autism Spectrum Disorders (ASD), a new population of families is growing requiring services. Little is known about their characteristics and need for support. Instead, past research has tended to focus on specialist assessments and interventions. Over 100 parents with a child aged under five years of age were interviewed individually at home using a semi‐structured questionnaire and standard rating scales. Although all children had been given a confirmed diagnosis of ASD at specialist community clinics, wide variations existed in the children’s developmental difficulties and in the characteristics of their families. A majority of families reported marked impacts on family life with increased levels of parental stress. However, the amount and type of professional support available to families were not related to child or family characteristics. Family‐centred intervention and support services are required and they should be available to parents irrespective of their child having a confirmed diagnosis.     

Preschoolers with autism spectrum disorders: the impact on families and the supports available to them

As more children are diagnosed at a younger age with Autism Spectrum Disorders (ASD), a new population of families is growing requiring services. Little is known about their characteristics and need for support. Instead, past research has tended to focus on specialist assessments and interventions. Over 100 parents with a child aged under five years of age were interviewed individually at home using a semi-structured questionnaire and standard rating scales. Although all children had been given a confirmed diagnosis of ASD at specialist community clinics, wide variations existed in the children's developmental difficulties and in the characteristics of their families. A majority of families reported marked impacts on family life with increased levels of parental stress. However, the amount and type of professional support available to families were not related to child or family characteristics. Family-centred intervention and support services are required and they should be available to parents irrespective of their child having a confirmed diagnosis.     

What parents find important in the support of a child with profound intellectual and multiple disabilities

Background The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of ‘family‐centred care’. To what extent family‐centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. Aim The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. Method In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non‐parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Results Parents rated situations related to ‘Respectful and Supportive Care’ and ‘Enabling and Partnership’ with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for ‘Providing Specific Information about the Child’. Parents of children in the ‘6–12 years’ age group gave significantly higher scores on this scale than did parents of children in the ‘≥17 years’ age group (U = 288, r = ?0.34). Conclusion This study shows that parents with children with PIMD find family‐centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important.     

Parents' reports of their involvement in an Iranian parent-based early intervention programme for children with ASD

Based on the findings of several preliminary studies on support and services for children with autism spectrum disorder (ASD) and their parents in Iran, an early intervention programme called Omid was established. This programme is based on the social model of disability. To promote the Omid resource kit, which is a component of the ‘Omid Early Intervention Programme’, a group of Iranian parents (N?=?39) of children with ASD at the first stage of diagnosis were recruited to ascertain their thoughts on parental engagement in the intervention programme. Parents' thoughts about the resource kit, the parent workshop and the professional visit at home were collected through notes which the parents presented to the researchers. Thematic analysis of the notes and comments showed that parental engagement in the early intervention process through a resource kit was welcomed within a society in which service provision for ASD is sparse and support for children with ASD and their parents is lacking.     

Parent education and training or family therapy: Does it matter which comes first?

This paper raises questions about the appropriate focus for residential group care programs as they work with parents (including single parents) of children in care. Many programs, in their efforts to claim status as treatment centers, have broadened their range of services and now include therapeutic services for parents, in particular family therapy. However, there has not been a serious examination of whether therapeutic approaches to work with families fit the group care service context. This paper will address concerns about using family therapy in group care programs and will suggest that parent education and training is a more effective alternative.     

Can social support matter? The relationship between social support and mental health among bereaved parents in an only-child society: Evidence from China

Shidu parents (parents who lost their only child) experience poor mental health, and social support is expected to alleviate mental stress and facilitate mental adaptation of bereaved parents. However, the literatures on the effects of social support on mental health of bereaved parents have yield mixed outcomes, and the relationship between social support and mental health among Shidu parents has been unexplored in China. The purpose of this study was to examine the relationship between social support and mental health among Shidu parents in China. Multistage stratified random sampling was conducted to collect data in 2017, and a total of 1,750 Shidu parents were employed as the analytical sample. The Ordinary Least Squares Model and Instrumental Variables (IV) Method were both employed. The variable of community services for the aged provided by the market was employed as the IV of the study considering death taboo inveterately rooted in philosophies and religions in Chinese culture. The results indicated that there was a positive relationship between social support and mental health among Shidu parents, specifically, objective social support and social support utilisation were significantly related to mental health of Shidu parents, while subjective social support was not. Implications of the study include the following: First, it is crucial to help spouse and friends gain appropriate social support skills. Mutual associations can be an important source of social support. Second, objective social support should be given a top priority, and suitable amount, timing, source and structure of social support should be paid more attention to strengthen the ‘goodness of fit’ between the needs of Shidu parents and support provided. Third, some other social services such as community care, social work services and professional consulting services can be appropriate alternatives to alleviate mental stress of Shidu parents.