Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice

The World Health Organization's International Classification of Functioning, Disability and Health recognizes that environmental factors impact well-being and life participation for children with disabilities. A primary environment in which children grow and learn is the family. The importance of family has long been recognized in family-centered practice and family-centered research. Although family-centered services and research have been critically explored, the concept of family has received less critical attention in rehabilitation literature. The family construct is due for an updated conceptualization with careful consideration of the implications for childhood disability rehabilitation practice and research. Interrogating the family construct asks questions such as: who is included as a part of the family? Which family structures are prioritized and valued? What is the potential harm when some families are ignored or underrepresented in childhood disability practice and research? What implications could a modern rethinking of the concept of family have on the future of childhood rehabilitation practice and research? This perspective article raises these critical questions from the authors' perspectives as parents of children with disabilities, child focused rehabilitation professionals, and researchers that focus on service delivery in children's rehabilitation and family engagement in research. A critical reflection is presented, focused on how the construct of family affects children's rehabilitation practice and research, integrating concepts of equity, inclusion and human rights. Practical suggestions for children's rehabilitation service providers and researchers are provided to aid in inclusive practices, critical reflection, and advocacy.

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A Web-Based Knowledge Translation Resource for Families and Service Providers (The “F-Words” in Childhood Disability Knowledge Hub): Developmental and Pilot Evaluation Study (Preprint)

10.2196/preprints.10439 ◽

2018 ◽

Author(s):

Andrea Cross ◽

Peter Rosenbaum ◽

Danijela Grahovac ◽

Julie Brocklehurst ◽

Diane Kay ◽

...

Keyword(s):

Knowledge Translation ◽

Service Providers ◽

Evaluation Study ◽

Study Data ◽

Perceived Usefulness ◽

World Health ◽

International Classification Of Functioning ◽

Childhood Disability ◽

Web Based ◽

The Impact

BACKGROUND The “F-words in Childhood Disability” (Function, Family, Fitness, Fun, Friends, and Future) are an adaptation and an attempt to operationalize the World Health Organization’s (2001) International Classification of Functioning, Disability and Health (ICF) framework. Since the paper was published (November 2011), the “F-words” have attracted global attention (>12,000 downloads, January 2018). Internationally, people have adopted the “F-words” ideas, and many families and service providers have expressed a need for more information, tools, and resources on the “F-words”. OBJECTIVE This paper reports on the development and pilot evaluation of a Web-based knowledge translation (KT) resource, the “F-words” Knowledge Hub that was created to inform people about the “F-words” and to provide action-oriented tools to support the use of the “F-words” in practice. METHODS An integrated research team of families and researchers at CanChild Centre for Childhood Disability Research collaborated to develop, implement, and evaluate the Knowledge Hub. A pilot study design was chosen to assess the usability and utility of the Web-based hub before implementing a larger evaluation study. Data were collected using a brief anonymous Web-based survey that included both closed-ended and open-ended questions, with the closed-ended responses being based on a five-point Likert-type scale. We used descriptive statistics and a summary of key themes to report findings. RESULTS From August to November 2017, the Knowledge Hub received >6,800 unique visitors. In 1 month (November 2017), 87 people completed the survey, of whom 63 completed the full survey and 24 completed 1 or 2 sections. The respondents included 42 clinicians and 30 family members or individuals with a disability. The majority of people visited the Knowledge Hub 1-5 times (n=63) and spent up to 45 minutes exploring (n=61) before providing feedback. Overall, 66 people provided information on the perceived usefulness of the Knowledge Hub, of which 92% (61/66) found the Knowledge Hub user-friendly and stated that they enjoyed exploring the hub, and a majority (n=52) reported that the Knowledge Hub would influence what they did when working with others. From the open-ended responses (n=48), the “F-words” videos (n=21) and the “F-words” tools (n=15) were rated as the best features on the Knowledge Hub. CONCLUSIONS The “F-words” Knowledge Hub is an evidence-informed Web-based KT resource that was useful for respondents, most of whom were seen as “early adopters” of the “F-words” concepts. Based on the findings, minor changes are to be made to improve the Knowledge Hub before completing a larger evaluation study on the impact at the family, clinician, and organizational levels with a wider group of users. Our hope is that the “F-words” Knowledge Hub will become a go-to resource for knowledge sharing and exchange for families and service providers.

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Family-Centered Positive Psychology

The Oxford Handbook of Positive Psychology ◽

10.1093/oxfordhb/9780195187243.013.0052 ◽

2009 ◽

pp. 550-560 ◽

Cited By ~ 13

Author(s):

Susan M. Sheridan ◽

Jennifer D. Burt

Keyword(s):

Positive Psychology ◽

Family Functioning ◽

Protective Factor ◽

Service Providers ◽

Well Being ◽

Healthy Children ◽

Family Centered Care ◽

The Family ◽

Centered Care ◽

Family Centered

Throughout the past several decades the economic and cultural conditions of the American family have changed dramatically. These changing family dynamics create challenges for service providers to work with families in a way that supports their healthy functioning and respects their values. The presence of multiple risk factors is generally understood to create discontinuities in interaction rules between home and community environments and contribute to challenges in assuring positive family functioning. Within this chapter, we discuss the characteristics of healthy children and families and how the parent—child relationship can serve as a protective factor for young children at risk. Family-centered positive psychology (FCPP) recognizes the family as a constant in the child's life and strives to support both child well-being and healthy family functioning. Throughout this chapter, families and children are discussed from a strengths-based approach that recognizes the assets and strengths present within the family rather than the deficits or limitations. Family-centered services (FCSs) are a framework for service delivery that is based on the principles of FCPP. In FCSs, service providers strive to create a context within which families may become empowered; assist family members to identify their unique needs and acquire skills and competencies; and identify social networks to promote positive outcomes for the child and family. In this chapter, we describe the primary principles of family-centered care, discuss implications for practice, describe one model of family-centered care that illustrates FCS in practice, and discuss future research directions for FCPP.

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The Relationship Between Client-Centered Goal-Setting and Treatment Outcomes

Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders ◽

10.1044/nnsld22.1.28 ◽

2012 ◽

Vol 22 (1) ◽

pp. 28-35 ◽

Cited By ~ 3

Author(s):

Jennifer L. Womack

Keyword(s):

Treatment Outcomes ◽

Goal Setting ◽

Well Being ◽

World Health ◽

International Classification Of Functioning ◽

Client Relationships ◽

Centered Care ◽

Communication Challenges ◽

Treatment Priorities

Shifting definitions of health and well-being, prompted by the World Health Organization's International Classification of Functioning (2001), have stimulated changes in traditional clinician-client relationships in rehabilitation. Among these changes, in keeping with the concept of client-centered care, is a trend toward more collaborative goal-setting and joint determination of intervention plans. Evidence suggests that supporting clients' autonomy in prioritizing personally meaningful goals leads to increased engagement in intervention, less emotional anxiety about the rehabilitation process, and improved treatment outcomes. Supporting people with aphasia in a process of collaborative goal formulation may also serve to alter treatment priorities so that they address more relevant communication challenges embedded in post-rehabilitation life.

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International Conference on Child Day-Care Health: Opening Remarks

PEDIATRICS ◽

10.1542/peds.94.6.987 ◽

1994 ◽

Vol 94 (6) ◽

pp. 987-987

Author(s):

Hu Ching-Li

Keyword(s):

Child Health ◽

Child Nutrition ◽

Well Being ◽

Fundamental Rights ◽

World Health ◽

Child Day Care ◽

Infant And Young Child ◽

The Family ◽

Definition Of ◽

Health Organization

It is important to recall the definition of health embodied in the Constitution of the World Health Organization (WHO) over 45 years ago: "Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic, or social condition." Among the Organization's mandated functions is "to promote maternal and child health and welfare and to foster the ability to live harmoniously in a changing total environment." The challenge of that task is no less today than it was then. Historically, societies have evolved various patterns of family structure for social and economic functions. In preindustrial societies there evolved a great concordance between these functions, with many of the health, developmental, and socialization functions taking place first within the family and then within the immediate community. The rapid social changes of both the industrial and information revolutions have changed drastically the functions of the family, and have shifted many of the health, developmental, and social functions to nonfamily institutions, from which families are often excluded or marginally involved. Much of the international attention to child health in this last decade has been directed at simple interventions to prevent the nearly 13 million deaths each year of children under 5: universal child immunization; the control of diarrheal and acute respiratory diseases; and infant and young child nutrition, particularly breast-feeding.

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ICT to Promote Well-Being within Families

Sensors ◽

10.3390/s18092760 ◽

2018 ◽

Vol 18 (9) ◽

pp. 2760 ◽

Cited By ~ 3

Author(s):

Jure Trilar ◽

Andrej Kos ◽

Simona Jazbinšek ◽

Lea Jensterle ◽

Emilija Stojmenova Duh

Keyword(s):

Online Survey ◽

Well Being ◽

Structured Interviews ◽

Family Time ◽

Development Fund ◽

European Regional Development Fund ◽

The Family ◽

The Republic ◽

Family Centered ◽

Future Program

Within the Active Living and Well-Being Project (RRP3), funded by the Republic of Slovenia and the European Regional Development Fund Investing in Your Future program, we aim to develop different approaches and prototype solutions to provide ICT solutions for the family in order to connect its members; communicate; promote quality family time, active life, a health-friendly lifestyle and well-being; and integrate various sensor and user-based data sources into a smart city ecosystem platform. A mixed methodology, combined qualitative and quantitative approaches, was selected to conduct the study. An online survey with a structured questionnaire as well as semi-structured interviews were performed. Through the analysis of the results, we tried to establish a family-centered design approach that would be inclusive as much as possible, creating benefits for all generations in order to develop an interactive prototype solution that would allow us to further test and verify different use-case scenarios.

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Using the ICF-CY to Support Inclusive Education in Ghana

Exceptionality Education International ◽

10.5206/eei.v29i1.7777 ◽

2019 ◽

Vol 29 (1) ◽

Author(s):

Christiana Okyere ◽

Catherine Donnelly ◽

Heather Michelle Aldersey

Keyword(s):

Inclusive Education ◽

Children With Disabilities ◽

Children And Youth ◽

World Health ◽

International Classification Of Functioning ◽

Personal Factors ◽

Middle Income ◽

The World ◽

Education In Ghana ◽

Health Organization

The international classification of functioning, disability, and health for children and youth (ICF-CY) developed by the World Health Organization (WHO) is a framework for understanding concepts of disability specific to children and youth. This framework has been used in countries around the world to support the education of children with disabilities. In this article, we argue that the ICF-CY has the potential to inform and support Ghana’s education system and to improve the implementation of education for children with disabilities, particularly inclusive education, in Ghana. Specifically, we use children with intellectual and developmental disabilities (IDD) as an exemplar to examine how the ICF-CY can support inclusive education for children with disabilities within its main components: Body Functions and Structures, Activities and Participation, Environmental Factors, and Personal Factors. Examining the ICF-CY in these areas is significant, as many similar low- and middle-income contexts have yet to adopt the framework and may draw insights and lessons for its significance in educational contexts.

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Family-Centered Approach to Monitoring Children’s Development in a Paediatric Outpatient Setting: Feasibility Study from Pakistan

10.21203/rs.3.rs-194080/v1 ◽

2021 ◽

Author(s):

Muneera A. Rasheed ◽

Waliyah Mughis ◽

Kinza N Elahi ◽

Babar S. Hasan

Keyword(s):

Service Providers ◽

Psychosocial Support ◽

Tertiary Care ◽

Wait Time ◽

Well Being ◽

Parent Report ◽

Outpatient Setting ◽

Theory Of Change ◽

Care Hospital ◽

Family Centered

Abstract Background: The purpose of the study was to design and test the feasibility of a recent guideline of family-centered psychosocial support as an approach to developmental monitoring in a pediatric outpatient setting.Methods: The patient experience team at a private tertiary care hospital leveraged an on-going patient and family-centric initiative in the service to implement the intervention. The intervention delivery model was designed using the theory of change model and entailed the following i) the service providers: paediatricians but with support from psychology trainee volunteers to address time constraints; ii) monitoring form: Survey of Well-Being of Young Children (SWYC) being feasible and designed for regular developmental monitoring as parent report; iii) family support intervention: the Care for Child Development module to enhance parent-child interactions given team’s successful experience with inpatient children; iv) timing: utilize wait time to also enhance families’ experience and v) reinforcement: reinforced by the paediatrician in the consultation visit to capitalize on the established rapport and relationship with families. All families with children under 5 years 5 months of age in selected clinics (acute care, complex care, developmental issues) were eligible. The study was evaluated for acceptability and implementation feasibility. Families were interviewed about their experience; trainees provided a written narrative while physicians provided feedback on email. These were thematically analyzed using an inductive approach.Results: A total 182 families were administered the SWYC with 54% children detected for further review on cognitive milestones and 76% on social-emotional milestones. Forty-eight families were interviewed regarding their experience with the intervention. They reported the monitoring process to be useful and important for them as parents indicating acceptability. Paediatricians and trainees found the intervention to be important for parents and children’s health also requesting further understanding about child’s functioning. The trainees further expressed the experience to be significant for their own learning.Conclusion: The authors conclude that the intervention model for a family-centric approach to monitoring was acceptable to the families and the service providers. The intervention when implemented using a robust behaviour change framework can enhance feasibility.

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The Move & PLAY Study: An Example of Comprehensive Rehabilitation Outcomes Research

Physical Therapy ◽

10.2522/ptj.20090424 ◽

2010 ◽

Vol 90 (11) ◽

pp. 1660-1672 ◽

Cited By ~ 31

Author(s):

Doreen J. Bartlett ◽

Lisa A. Chiarello ◽

Sarah Westcott McCoy ◽

Robert J. Palisano ◽

Peter L. Rosenbaum ◽

...

Keyword(s):

Cerebral Palsy ◽

Data Collection ◽

Outcomes Research ◽

Service Providers ◽

World Health ◽

International Classification Of Functioning ◽

Rehabilitation Outcomes ◽

Children With Cerebral Palsy ◽

Comprehensive Rehabilitation

This perspective article provides an example of a study planned using guidelines for comprehensive rehabilitation outcomes research, an approach that is believed to give service providers meaningful evidence to support practice. This line of investigation has been guided by the World Health Organization's International Classification of Functioning, Disability and Health. The short title of a study under way is Move & PLAY (Movement and Participation in Life Activities of Young Children). The article briefly describes the conceptual model, provides guidelines on how indicators and measures are selected, alludes to the details of selected measures, and describes processes of preparing for data collection, including obtaining ethics approval, preparing data collection booklets, training assessors and interviewers, and sampling. The aim of this investigation is to gain a better understanding of the multiple child, family, and service factors associated with changes in mobility, self-care, and play of preschool children with cerebral palsy as a result of using this research method. Comprehensive rehabilitation outcomes research holds promise in providing evidence that supports the complexities of planning rehabilitation services with clients with chronic conditions, such as children with cerebral palsy.

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Family-centered practices and the parental well-being of young children with disabilities and developmental delay

Research in Developmental Disabilities ◽

10.1016/j.ridd.2019.103495 ◽

2019 ◽

Vol 94 ◽

pp. 103495 ◽

Cited By ~ 3

Author(s):

Joana Maria Mas ◽

Carl J. Dunst ◽

Anna Balcells-Balcells ◽

Simon Garcia-Ventura ◽

Climent Giné ◽

...

Keyword(s):

Young Children ◽

Developmental Delay ◽

Children With Disabilities ◽

Well Being ◽

Young Children With Disabilities ◽

Family Centered

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Principles of neurological rehabilitation

10.1093/med/9780198569381.003.0160 ◽

2011 ◽

Author(s):

Michael Donaghy

Keyword(s):

Controlled Trial ◽

Well Being ◽

Primary Diagnosis ◽

World Health ◽

International Classification Of Functioning ◽

Neurological Rehabilitation ◽

Rehabilitation Team ◽

Wide Range ◽

Neurological Patients ◽

Reasonable Evidence

Neurology has an undeserved reputation for being a speciality where diagnosis requires great intellectual effort, although from which little therapeutic intervention flows. The reader will form their own opinion about the difficulty of making diagnoses, but now neurological rehabilitation can offer all patients great help subsequently. Other chapters discuss the roles of specific medical and surgical treatments in transforming neurological patients’ lives; this chapter discusses the role of neurological rehabilitation in focusing primarily on reducing limitations on patient activities rather than by detailing the specific nature of these individual interventions.Neurological rehabilitation can be defined as a process that aims to optimize a person’s participation in society and sense of well-being. This definition highlights several important features: rehabilitation is not a particular type of intervention; the focus is on the patient as a person; the goals relate to social functioning, as well as health or well-being; it is not a process restricted to patients who may recover, partially or completely, but applies to all patients left with long-term problems. The contrast to traditional neurology is in the broader scope, extending well away from the underlying pathology but always being fully informed by the paramount importance of the primary diagnosis.This chapter will start by giving a fuller description of rehabilitation in terms of structure, represented by the resources needed, process, consisting of what happens, and outcome, defined by the goals. Subsequently the general evidence supporting neurological rehabilitation as a process is reviewed. It is not practicable to review the wide range of high class randomized controlled trial evidence investigating different and detailed aspects of the process. Some specific diseases and specific clinical problems are considered in Section 6.4.Neurological rehabilitation has a sound theoretical and conceptual basis derived from the World Health Organisation’s International Classification of Functioning, the WHO ICF (Wade and Halligan 2004) and from a general problem-solving approach (Wade 2005). There is strong evidence supporting its effectiveness as a process, and reasonable evidence in support of some specific treatments. The approach of neurological rehabilitation extends the intellectual challenge of neurology; in most clinical situations the physician and the wider rehabilitation team have to make pragmatic decisions based on incomplete information concerning many important factors.

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