Child: Care, Health and Development, 33(3), May 2007, pp.296-307.
Publisher:
Wiley
Communication with parents who are realizing their child is severely disabled is a difficult task for professionals. Parents are experiencing great emotional stress during the diagnostic process and dissatisfaction with disclosure is widespread. The aim of this study was to investigate parents’ reactions when realizing their child’s disability, the impact of the diagnosis and parents’ ways of coping. This was a qualitative, longitudinal study, using in-depth interviews with 16 parents of a physically and mentally disabled child who had recently been diagnosed as such. Children’s age at inclusion ranged from 1 to 27 months. Half of the children had an unknown diagnosis. Data were analysed using the Grounded Theory method. Results were validated and approved by the interviewed parents. The certainty of the diagnosis was central for parents’ experiences. First, the emotional reaction of the parents is highly influenced by the diagnostic process. Second, parents needed possibilities for taking action, and third they found difficulty in coping with an uncertain future. These three themes all related to the meaning that parents ascribed to the stating of a diagnosis. Parents’ needs in relation to communication were identified as equality in co-operation with doctors, an empathic professional approach, and the child being seen with possibilities despite his or her disabilities. Parents’ process of realization was related to the diagnostic process, and information and communication should be individualized accordingly. Parents wanted to co-operate and they needed possibilities for active coping with their situation.
Communication with parents who are realizing their child is severely disabled is a difficult task for professionals. Parents are experiencing great emotional stress during the diagnostic process and dissatisfaction with disclosure is widespread. The aim of this study was to investigate parents’ reactions when realizing their child’s disability, the impact of the diagnosis and parents’ ways of coping. This was a qualitative, longitudinal study, using in-depth interviews with 16 parents of a physically and mentally disabled child who had recently been diagnosed as such. Children’s age at inclusion ranged from 1 to 27 months. Half of the children had an unknown diagnosis. Data were analysed using the Grounded Theory method. Results were validated and approved by the interviewed parents. The certainty of the diagnosis was central for parents’ experiences. First, the emotional reaction of the parents is highly influenced by the diagnostic process. Second, parents needed possibilities for taking action, and third they found difficulty in coping with an uncertain future. These three themes all related to the meaning that parents ascribed to the stating of a diagnosis. Parents’ needs in relation to communication were identified as equality in co-operation with doctors, an empathic professional approach, and the child being seen with possibilities despite his or her disabilities. Parents’ process of realization was related to the diagnostic process, and information and communication should be individualized accordingly. Parents wanted to co-operate and they needed possibilities for active coping with their situation.
Response to the consultation document issued jointly by the Department for Education and Skills and the Department of Health concerned with the delivery of services to children with disabilities in the age range birth to two and their families.
Response to the consultation document issued jointly by the Department for Education and Skills and the Department of Health concerned with the delivery of services to children with disabilities in the age range birth to two and their families.
Subject terms:
parents, physical disabilities, babies, children, consultation, Department of Health, government departments, government policy;
Guide aimed at parents of disabled children and children with learning difficulties. It aims to help parents: acknowledge and manage difficult emotions like grief, fear, anger and shame; recognise differences in the ways fathers and mothers deal with a child's disability; tune in to a child's individual traits and temperament; cope with challenging behaviour through positive methods; understand the ongoing impact of a child's disability on siblings and parents; and communicate effectively with professionals.
Guide aimed at parents of disabled children and children with learning difficulties. It aims to help parents: acknowledge and manage difficult emotions like grief, fear, anger and shame; recognise differences in the ways fathers and mothers deal with a child's disability; tune in to a child's individual traits and temperament; cope with challenging behaviour through positive methods; understand the ongoing impact of a child's disability on siblings and parents; and communicate effectively with professionals.
Offers advice and information on coping with the initial diagnosis, brothers and sisters, self-image, expectations and achievements, play, integration, and education. Focuses throughout on children as individuals. Written mainly for parents, but also useful for professionals working with children with special needs.
Offers advice and information on coping with the initial diagnosis, brothers and sisters, self-image, expectations and achievements, play, integration, and education. Focuses throughout on children as individuals. Written mainly for parents, but also useful for professionals working with children with special needs.
This paper reviews the evidence for the effectiveness of different kinds of family support services, focusing on those that social services departments are likely to commission or provide to support families who are disadvantaged or experiencing particular difficulties in their lives. The aims of this paper are: to describe different methods of evaluation, and outline some of the problems and issues raised by evaluating social welfare provision in general and family support services in particular; to provide a brief overview of the research evidence on ‘what works’ in different kinds of family support provided for children in need; to bring together information on various measures and scales which have been used to evaluate family support services.
This paper reviews the evidence for the effectiveness of different kinds of family support services, focusing on those that social services departments are likely to commission or provide to support families who are disadvantaged or experiencing particular difficulties in their lives. The aims of this paper are: to describe different methods of evaluation, and outline some of the problems and issues raised by evaluating social welfare provision in general and family support services in particular; to provide a brief overview of the research evidence on ‘what works’ in different kinds of family support provided for children in need; to bring together information on various measures and scales which have been used to evaluate family support services.
Extended abstract:
Author
Statham, June;
Title
Outcomes and effectiveness of family support services: a research review.
Publisher
Institute of Education, University of London in association with Thomas Coram Research Unit, 2000.
Summary
This paper reviews the evidence for the effectiveness of different kinds of family support services, focusing on those that social services departments are likely to commission or provide to support families who are disadvantaged or experiencing particular difficulties in their lives. The aims of this paper are: to describe different methods of evaluation, and outline some of the problems and issues raised by evaluating social welfare provision in general and family support services in particular; to provide a brief overview of the research evidence on 'what works' in different kinds of family support provided for children in need; to bring together information on various measures and scales which have been used to evaluate family support services.
Context
Current government policy stresses the importance of evaluation and assessing the outcomes of services that are provided or purchased by local authorities. There is a new emphasis on evidence-based practice, grounded in information from research that attempts to show what works both in individual cases and in the planning of services. Agencies in both the statutory and independent sectors are increasingly expected to demonstrate successful outcomes in order to obtain funding and meet government targets.
Method
Due to this being a research review many methodologies are laid out and explained to the reader, however due to the nature of this review it is not possible to set out a method.
Contents
This review is divided into five sections. The introduction lays out the aims of the review and provides background information. The second section sets up the conceptual framework. It investigates what is meant by family support services and evaluation. It thengoes on to explore different research methodologies as a way to assess effectiveness, and issues in evaluating family support services. Section three reviews what is known about the effectiveness of different kinds of services to support families, covering (amongst others); day care and early education, befriending and social support, and family group conferences. Section four looks at measuring outcomes and costs. Section five offers conclusions on this subject.
Conclusion
" Much of the evidence for the effectiveness of family support services comes from the USA, where there is a strong tradition of systematic programme evaluation and a particular approach to family support. The findings from this research need to be applied withcaution in different social welfare contexts, and it needs to be recognised that different policies and ways of thinking about children would lead to different ways of conceptualising the evaluation of family support."
112 references
ISBN 0 85473 627 1
Subject terms:
intervention, literature reviews, mental health problems, outcomes, parent-child relations, parents, physical disabilities, social workers, babies, children, day services, families, family centres, family group conferences, evaluation, evidence-based practice, foster care, health visiting;