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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, Jeremyâs 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 âFamily-Centred Service.â
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 âbest practice.â2
Ideas about âclient-centredâ or âfamily-centredâ practice originated in the 1940s with Carl Rogersâ 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 Childrenâs 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 childâs 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 childâs 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 childâs 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 94â142 also ...
