Family-centered Practice Research Articles

Collaborative Helping: A Practice Framework for Family‐Centered Services

This article offers a framework for collaborative family-centered practice that can rein-vigorate our work with families who have not responded to more traditional approaches. Collaborative Helping is grounded in family-centered principles that include: striving for cultural curiosity, believing in resourcefulness, working in partnership, and making our work more accountable to the clients we serve. The article introduces collaborative inquiry as an organizing metaphor for clinical practice and offers a five-step practice framework with clinical illustrations and sample questions. The framework draws from appreciative inquiry, motivational interviewing, the signs of safety approach to child protection work, and solution-focused and narrative therapies.

Within a Family-Centered Practice, How Can Family Outcomes Be Identified?

Family-centered practice (care, intervention, services, or help giving) and family-focused, and family-based care are terms used interchangeably over the past 60 years to describe an approach to wo...

Measuring Outcomes of Family-Centered Intervention: Development of the Life Participation for Parents (LPP)

Raising a child with disabilities impacts the ability of parents to participate in life situations. This paper describes the development of a new instrument, Life Participation for Parents, to measure outcomes of pediatric therapy on parental participation. Items were reviewed by six occupational therapists with experience in pediatrics and instrument development. The number of items was reduced to 23. The resultant instrument was completed by 29 parents of children with disabilities. Their scores were reviewed by the nine occupational therapists working with the children. Parent and therapist respondents were interviewed regarding item content. Instrument responses were evaluated for internal consistency. The respondents confirmed the face and content validity of the construct, variability in responses, and readability of the items. Good internal consistency for items was demonstrated (Cronbach's alpha. 85). The preliminary results indicate that the Life Participation for Parents is a promising tool for evaluating parental issues and measuring parent outcomes in family-centered practice.

Flexibility of Programme Delivery in Providing Effective Family-centred Intervention for Remote Families

Equity of service delivery to families of children with hearing loss is an important outcome that is sometimes difficult to achieve. With the current philosophy of family centred practice, questions arise as to how service can be delivered, how equitable that service might be, and how the quality of service may or may not be affected. There were two aims of this study. The first was to investigate beliefs and values around family-centred practice through examining professional beliefs about children, parents and how they could work with families. The second was to investigate how the mode of programme delivery might be associated with outcomes for families. This was done through measuring families' ratings of their own family functioning. Participants included 27 professionals from an early intervention programme for children with hearing loss and 24 families receiving services from the same programme (n = 16 metro; n = 8 rural). Results showed that professionals showed evidence of strong beliefs in most aspects of family-centred practice. They reported that they believed in practice that fostered partnerships, and that they were most effective when they worked with parents rather than directly providing child therapy. All families were satisfied with the intervention they had received and rated themselves highly on family functioning. For rural families the problem of distance from the centre was not an issue since the programme had adopted a flexible service delivery approach. Copyright © 2008 John Wiley & Sons, Ltd.

Flexibility of programme delivery in providing effective family-centred intervention for remote families

AbstractEquity of service delivery to families of children with hearing loss is an important outcome that is sometimes difficult to achieve. With the current philosophy of family centred practice, questions arise as to how service can be delivered, how equitable that service might be, and how the quality of service may or may not be affected. There were two aims of this study. The first was to investigate beliefs and values around family-centred practice through examining professional beliefs about children, parents and how they could work with families. The second was to investigate how the mode of programme delivery might be associated with outcomes for families. This was done through measuring families' ratings of their own family functioning. Participants included 27 professionals from an early intervention programme for children with hearing loss and 24 families receiving services from the same programme (n = 16 metro; n = 8 rural). Results showed that professionals showed evidence of strong beliefs ...

Service Delivery in Natural Environments

Service Delivery in Natural Environments

Parent stress, parenting competence and family-centered support to young children with an intellectual or developmental disability

A family-centered approach to the support of families with a young child with an intellectual or developmental disability has been widely adopted in the last decade. While some of the foundational assumptions of family-centered theory have been tested, there remain considerable gaps in the research evidence for this approach. While parenting stress and competence have been examined in the general family support literature, these variables have received little attention in the family-centered support literature. This pilot study examined the relationship between parent stress and parenting competence and family-centered support. The results suggest that important components of family-centered practice are significantly associated with parent stress, but that a meaningful association between parenting competence and family-centered practice is yet to be demonstrated.

Development in quality of relationship between the significant other and the lung cancer patient as perceived by the significant other

Aim To prospectively explore the quality of the relationship between significant others and patients during lung cancer, based on the perceptions of the significant others. Method In a sample of 91 significant others, longitudinal data were collected during the first year after diagnosis, and explored on group level and as individual patterns over time. Results Relational quality was skewed towards high quality, although 30% of the significant others reported low levels close to diagnosis. Forty-eight percent reported stability in the quality of their relationship during the disease trajectory. Within this group, 36% reported low levels of relational quality. Fifty-two percent reported change in quality of relationship and four typical patterns of change were identified. Two showed approximate linear changes in either a positive direction (15%) or a negative direction (49%), and two showed non-linear changes with a temporary ascending curve (11%) or a descending curve (26%). This implies that a change towards low levels of relational quality was most common. Conclusion The present results show that illness may be a trigger for change in relational quality, which may have implications for future family-centred practice and research, since previously high relational quality has been linked to improved emotional well-being.

The Importance of Parent and Child Opinion in Detecting Change in Movement Capabilities

Children and parents can make valid judgments about movement difficulties, which aids in the screening and assessment of Developmental Coordination Disorder (DCD). When considering therapy outcomes, child and family-centred practice supports the inclusion of parent and child perspectives to reflect progress made in meaningful daily contexts. This paper describes an evaluation of the use of questionnaires for parents and children to measure change in motor performance. Questionnaires were administered to 43 children with DCD and their parents five times over two-anda-quarter years in conjunction with other clinical measures. Parent report, using the Developmental Coordination Disorder Questionnaire, correlated significantly with clinical measures of motor skill, whilst parent and child perceptions differed. Children's confidence and resilience may influence their opinions of their ability. These results raise questions of whose perspective of progress is most valid and relevant - the therapist's, child's or parent's?

From the Editors

You're not the cause, but you can be the solution. Greenspan, 1995, p. 1 Stanley I. Greenspan, pediatric psychiatrist, directed this chapter title to parents in his book, The Challenging Child In this issue of Topics in Language Disorders, the issue editor, Patricia Prelock, has invited articles on the topic of “Supporting social communication, perspective taking, and participation in children with autism spectrum disorders.” This topic is timely and important for researchers and clinicians across a number of disciplines, who collaborate with families to improve the quality of family life, as well as to meet the communication development needs of individual children with autism spectrum disorders (ASD). Prelock, whose broader body of work represents a model of interdisciplinary collaboration and contextual relevance, has lived up to the standards she has set by incorporating the perspectives of researcher-clinicians from nursing, occupational therapy, and psychology, as well as from speech–language pathology. Appropriately, readers of this issue will benefit also from the voices of parents and clinicians-in-training, working with professionals to grapple with the tough issues of how to improve the genuine participation of children and adolescents with ASD in the social and recreational world of play and interaction with their families and peers. Autism is remarkable, both in its prevalence, which seems to have been increasing, and in the pervasiveness of its effects on children and families. Current epidemiological estimates suggest that 1 out of every 150 children born may have a risk of ASD and approximately 1.5 million Americans and their families now are affected (Autism Society of America, 2007). Autism is found in all countries and all racial, ethnic, and socioeconomic groups (Fombonne, 2007). Autism spectrum disorders differ widely in expression and severity but are grouped together on the basis of involvement of the triad of symptoms involving difficulties in social interaction, verbal and nonverbal communication, and restricted and repetitive patterns of behavior (American Psychiatric Association, 2000; Wetherby & Prizant, 2000). Wing (1988) called this the triad of social interaction, communication, and “imagination.” At one end of the spectrum are children and adolescents with Asperger's syndrome, for whom delays in language development must be specifically excluded, but that does not mean that their social communication skills are unaffected. A particular challenge for the diverse group of children across the full range of the autism spectrum is the ability to imagine what others are thinking and how to enter imaginative play exchanges to make friends. Prelock and the interdisciplinary group of authors in this issue take on this challenge. They describe their clinical efforts to address these challenges for children and families. This issue also details the research challenges inherent in conducting research to gather the evidence on the effectiveness of family-centered practices in naturalistic settings. The collected articles within these pages are thoughtprovoking on a number of levels. We are pleased to offer them to the interdisciplinary audience of readers of Topics in Language Disorders, for their deep implications for research and practice. Nickola Wolf Nelson, PhD Editor Katharine G. Butler, PhD Editor Emerita

Family-centered practice with non-attending students in Hong Kong

Family-centered practice with non-attending students in Hong Kong

Resources Within Reason: Resources to Support Family-Centered Practices

Resources Within Reason: Resources to Support Family-Centered Practices

The Changing Role of Parents in Neonatal Care: A Historical Review

Over the past century, improvements in technology and neonatal care techniques have dramatically reduced infant mortality rates. While this progress continues, a growing body of literature supports the significant role that parents play in the development of infants, particularly within the hospital setting. Throughout much of the twentieth century, various barriers prevented many parents from participating in thc care of their neonates, negatively influencing infant outcomes. Today parental involvement in neonatal carc has become a key part of a larger family-centered care model. This historical review describes how past neonatal care practices affected the roles of parents, from absence or indirect involvemcnt to the important involved roles of today. Understanding current trends in relation to these past experiences may encourage the formulation of family-centered care practices now and in the friture.

Family-Centered Care in the Pediatric Post Anesthesia Care Unit: Changing Practice to Promote Parental Visitation

Although parental visitation in the PACU is the standard of care in a few institutions, it is surprisingly not a standard of care at most. Parental presence in the PACU at The Children's Hospital of Philadelphia (CHOP) was historically inconsistent and limited. It was recognized that consistent and relatively unlimited parental presence in the PACU was needed to better meet the CHOP commitment to provide family-centered care. Under the leadership of the Family Services Coordinators and the Perioperative Family-Centered Care Committee, staff worked to promote parental visitation in the PACU. Through education, multidisciplinary collaboration, ongoing support, and dissemination of data, parental visitation in the PACU increased from 44% in January 2004 to 90% in January 2007. This report addresses parental visitation in the PACU, as well as quality improvement strategies to promote this valuable family-centered practice.

Siblings of Children With Speech Impairment: Cavalry on the Hill

The purpose of this article was to examine the experiences of siblings of children with speech impairment, an underresearched area of family-centered practice. Using naturalistic inquiry, we interviewed 6 siblings and 15 significant others. Interview transcripts were analyzed for meaning statements, and meaning statements were coded and organized thematically. Four major themes emerged as significant in these children's experiences. The first theme described the typically positive relationship when siblings were together. The second theme related to the siblings' relationship in the context of outsiders, when the sibling of the child with speech impairment frequently undertook the roles of protector and interpreter. Exemplifying this, 1 mother described her daughter as the cavalry on the hill. In the third theme, the impact on self, siblings expressed jealousy and resentment as well as worry and concern toward the child with speech impairment. In the fourth theme, the impact on parent-child relationships, siblings expressed an awareness that they experienced less parental attention, had concerns regarding the impact of the circumstances on their parents, and took on a parent-like role toward the child with impairment, and for some, toward their parents. As part of family-centered practice, speech-language pathologists need to be aware of the important roles that siblings play and should routinely include siblings in assessment and intervention.

Finding Common Ground: Parents Speak Out About Family-Centered Practices

This article offers providers and family-centered systems of care helpful strategies for inviting effective working relationships with parents of young children with mental health concerns based on recommendations provided by parents. These recommendations resulted from a participatory action research project grounded in a narrative therapy approach to exploring three aspects of family-centered practices: (1) effective help-giving, (2) meaningful parent involvement, and (3) parent-to-parent support. Co-researchers—whether parent or professional—shared personal stories and reflections from the perspective of service seekers, and examined their experiences of power relations. This qualitative study demonstrates how cross-pollinating narrative therapy and participatory action research can contribute to knowledge about more equitable participative relationships between seekers of human services and providers and planners of these services.

Parents' and service providers' perceptions of family‐centred practice in a community‐based, paediatric disability service in Australia

For children who have physical disabilities and their families, involvement with a variety of providers of rehabilitation services is the norm rather than the exception. Despite family-centred practice (FCP) being recognized as the 'best practice' model, families experience models of service provision that range from 'expert' to 'collaborative'. After adopting FCP at Novita Children's Services in South Australia, it was imperative to determine the effectiveness of the implementation of FCP. Aim To investigate parents' and staff's perceptions of FCP at Novita as part of ongoing quality assurance activity, and to identify any gaps in the services provided. The Measures of Processes of Care (MPOC) for parents/caregivers and service providers were utilized. A total of 189 families stratified by the three age groups of clients (<6, 6-12 and 13-18 years) and home location (metropolitan and rural) completed the MPOC-20 questionnaire. A total of 145 staff, allied health therapists, rehabilitation engineers, managers and other staff who have direct contact with clients and their families completed the MPOC - service providers (MPOC-SP) questionnaire. Parents generally rated the family-centred behaviours of staff as positive. Respectful and supportive care received the highest rating, while providing general information received the lowest. There were significant differences in scores for all five scales of the MPOC between metropolitan and rural families and the age of the child. Service providers also generally rated their family-centred behaviours as positive. There were significant differences among the professions in areas of showing interpersonal sensitivity and providing general information. The findings suggest that parents and service providers perceive FCP as positive at Novita, with some areas for improvement. The MPOC-20 and MPOC-SP can be used to measure FCP and to identify service delivery gaps, which warrant further exploration.

Integrating a Family-Centered Approach into Social Work Practice with Families of Children and Adolescents with Disabilities

This article identifies a family-centered practice construct for working with children and adolescents with disabilities and their families. The experiences of these families have shifted considerably over the past 30 years. A legislative and historical context provides the basis for an understanding of present policies and practices that influence current approaches to service delivery. Though family-centered practice is emphasized in various practice settings, there is still a need to integrate this philosophy into social work practice with children and adolescents with disabilities and their families. In order to enhance the ability of the social worker to integrate this construct into practice, a framework for exploring the experiences of children, adolescents and families is provided. This framework provides an overview of factors related to the individual child, the family and siblings for the social worker to consider when working with these families. The social worker's role as collaborator, advocate, team member and family resource is highlighted.

The Implications of “Working Alliance” for the Measurement and Evaluation of Family-centered Practice in Childhood Disability Services

Family-centered practice in childhood disability services has been found to be positively related to consumer satisfaction. This study explores the relationship between family-centered practice and parental satisfaction with services, while controlling for the quality of the relational dimension or

Family Supports and Services in Early Intervention: A Bold Vision

This article utilizes four knowledge sources to characterize a current gap in policy and practice related to serving families in early intervention (birth to 5) programs. It argues that the field of early intervention has focused primarily on implementing family-centered practices by focusing on how families and professionals should interact. The field has not sufficiently addressed what supports and services should be offered to families to enhance the likelihood of positive outcomes for families themselves and for their children with disabilities. The paper concludes with recommendations for enhancing policy, research, and professional development related to family services and supports.