Family-Centred Assessment and Intervention in Pediatric Rehabilitation

Mary Law

• Publisher: Taylor & Francis
• Year: 2014
• Print ISBN: 9781138002388
• eBook ISBN: 9781317790129
• Edition: 1
• Topic: Médecine
• Subtopic: Ergothérapie

Family-Centred Assessment and Intervention in Pediatric Rehabilitation analyzes the effectiveness of Family-Centred Services (FCS) for children with disabilities or chronic illnesses. This text provides you with the exact definition of FCS and offers proof that parent involvement in children's treatment greatly enhances therapy. You can use the suggestions and methods to integrate parents into therapy, maximizing the family's intervention experiences and making your work more successful and effective.Many clinicians agree that families play a crucial part in deciding what intervention strategies are best for their children. From this text, you will learn that listening to parents and valuing parental input will give you insight into the goals, needs, and ambitions families have for their children. This enables you to choose, with the parent, the interventions that best suit your patients'needs and the needs of their families. In addition to information on how to integrate parents and families into intervention, Family-Centred Assessment and Intervention in Pediatric Rehabilitation offers suggestions that will improve your existing FCS or help you implement a family- centred approach, including:

• performing therapy in natural settings, such as school or home, to make changes in the children's social and physical environments
  
• acknowledging the grieving and adaptation process of families while being compassionate and understanding
  
• letting parents describe what they would like their child to be able to do and accomplish in the future
  
• putting the parents'concerns and requests first, enabling parents to deal with caring for their child
  
• supporting parents and reinforcing them when they have innovative and helpful ideas
  
• informing parents on the progress of their children and educating parents on methodologies and strategies used in FCSMany of the suggestions derived from the analysis of current data and original research in Family-Centred Assessment and Intervention in Pediatric Rehabilitation have immediate clinical applicability, allowing you to quickly adapt methods into your intervention processes. This text also provides you with information on types of evaluative methods, such as Measure of Processes of Care (MPOC) and Family-Centred Program Rating Scale (Fam PRS), that will help you determine if your FCS program is working efficiently. Emphasizing the goal of parent interaction in FCS services, Family-Centred Assessment and Intervention in Pediatric Rehabilitation offers methods that will improve your work with families and patients, making services more beneficial and relevant to the child and to their families.

Family-Centred Service: A Conceptual Framework and Research Review

Peter Rosenbaum

Susanne King

Mary Law

Gillian King

Jan Evans

SUMMARY. Family-ccntrcd service (FCS) is a popular phrase widely used to encompass a set of ideas about service delivery to children and their families. Despite the increasing adoption of the concepts of FCS, however, many clinicians may remain uncertain about exactly what FCS means. This review article has four purposes. The first section presents a brief review of the history and ideas behind FCS. Second, the authors present a new framework of FCS, blending the elements of this approach into a set of ideas that have immediate clinical applicability. The third focus of this paper is to review the research evidence that supports FCS and to point to areas where further research is needed. Finally we consider the implications for service providers of the move to FCS, and the potential uses of the FCS framework as a guide for teaching and research. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: [email protected]]

INTRODUCTION

Jeremy is a bright four-year-old boy with dystonic cerebral palsy who communicates by making guttural noises but has no speech. He has had more than two years of speech therapy at the local treatment centre. His parents have been advised by the treatment centre staff that a program of sign language would be beneficial, because it would enable Jeremy to put his ideas across, albeit in an alternative mode of communication. His grandparents are very much against this approach, believing that if this is done Jeremy will be stigmatized and never learn to talk. Because the grandparents care for Jeremy after daycare, and sometimes on weekends while his parents work, Jeremy’s parents are reluctant to go against their wishes. The parents come to discuss this dilemma with you.

This scenario could be reproduced in many variations to reflect contemporary issues in the delivery of child health services. Situations like these arc indicative of an increasing expectation on the part of parents to be involved in and control decision-making in matters that concern themselves and their children. No longer can health professionals simply prescribe to parents in a top-down paternalistic model of care, with the beliefs that parents want to be told what to do and that they will actually do it. Equally it is no longer possible to disregard the wishes and hopes of parents about the things that arc done for their children,

How should service providers respond to this expectation for parent involvement and control in issues of child health, especially in the context of chronic care? What models of service delivery arc appropriate for these changing times, and what are the implications of these models for clinical practice? To a large extent the answers to questions like these lie in an understanding and adoption of the concepts subsumed under the broad umbrella of “Family-Centred Service.”

The purpose of this article is to describe a framework of family-centred service (FCS) that addresses these issues. Building on elements of FCS that can be found in the literature, we set out to accomplish four goals: (a) to review briefly the history and ideas behind FCS; (b) to blend the elements of FCS into a conceptual framework; (c) to review research evidence that supports aspccts of the framework (and points out gaps in our understanding and information); and (d) to consider the implications of FCS for service providers, addressing expectations concerning our attitudes and behaviours implicit in the contemporary practice of FCS.

BACKGROUND AND HISTORY OF FAMILY-CENTRED SERVICE

The nature of services to children with disabilities, and of the parent-professional relationship, has changed dramatically over the past 50 years.¹ During the first half of this ccntury parents were viewed as incapable of raising their children with disabilities and thus institutional placement was recommended. In the 1940s and 1950s parents began to band together into advocacy groups. This began a slow evolution and shift away from professionals controlling the destiny of children with special needs to parents controlling the process in partnership with professionals. Many widespread social and political influences have converged to bring about these changes, of which the primary forces came from legislation, parental advocacy and current views of “best practice.”²

Ideas about “client-centred” or “family-centred” practice originated in the 1940s with Carl Rogers’ approach to working with families of problem children.³ In the mid-1960s the Association for the Care of Children in Hospital (ACCH-now the Association for the Care of Children’s Health) was founded and began to provide ideas about family-centred care. In the intervening 30 years, many organizations and authors have proposed concepts and discussed ways in which care and services should be offered to families of children with special health needs. To a great extent this literature is characterized by wisdom and insight, and is generally helpful in presenting the concepts behind the shift from authoritarian to partnership practice.

Intervention for children with chronic health problems or developmental disabilities has typically been child-centred with doctors and therapists setting goals which focus on bringing about changes in the child. The medical model of intervention views the health professional as the expert. The professional is able to assess the problems, recommend interventions, and provide or co-ordinate treatment. Over the past ten years the role of the family in the child’s life has received increased recognition. Both research and parent advocacy have led health care professionals to a realization that parents have tremendous insights into their child’s abilities and are valuable resources in their lives. Family systems theory emphasizes the interactions of various members of the family and the impact of cach member upon all the others. This theory also proposes that when family members are physically and psychologically healthy they arc more capable of facilitating their child’s development.⁴ This has led to the view that interventions can affect children indirectly by influencing other components of the family system.

The efforts of parent advocacy groups stimulated legislative changes in the United States that led to the enactment of the Education of All Handicapped Children Act in 1975, requiring parental involvement in decision-making about services for their children. Public Law 94–142 also ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• About the Editor
• Family-Centred Service: A Conceptual Framework and Research Review
• Parents' and Service Providers' Perceptions of the Family-Centredness of Children's Rehabilitation Services
• The Family-Centred Approach to Providing Services: A Parent Perspective
• Occupational Performance Needs of School-Aged Children with Physical Disabilities in the Community
• Planning Rehabilitation: A Comparison of Issues for Parents and Adolescents
• Family-Centred Functional Therapy for Children with Cerebral Palsy: An Emerging Practice Model
• Index