INTRODUCTION: FAMILY ADAPTATION TO

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Prior volumes of Mental Retardation and DevelopmentalDisabilities Research Reviews have addressed a wide rangeof issues, reviewing topics such as neuroimaging, novel

therapies, newborn screening, prenatal infections, glutamatesignaling, neurotransmitters, neuronal regeneration, and anumber of specific syndromes or disease states (e.g., fragile Xsyndrome, Rhett syndrome, autism, epilepsy, communicationdisorders). In these and other areas of research, exciting devel-opments are occurring, with much promise for understandingthe basic causes and mechanisms of intellectual and develop-mental disabilities, work that ultimately will lead to newer andmore effective treatment and prevention strategies.

In the meantime, families of children with intellectualand developmental disabilities continue their lives. For them,intellectual and developmental disability is a lived phenom-enon, one that for most families has resulted in alterations,adjustments, and accommodations in almost every aspect oflife. To better understand how families adapt to intellectualand developmental disabilities, researchers have conducted awide range of empirical investigations.

The nine articles in this issue provide systematic reviewsof a range of topics related to families of children with disabil-ities, including two formal meta-analyses. Collectively, thesereviews and the primary research they represent suggest anumber of major conclusions:

� General knowledge about family systems, family dy-namics, family culture, and family development overtime is applicable to families of children with disabil-ities. Theoretical and empirical knowledge about typi-cal family development and adaptation is helpful inunderstanding what happens when families face extra-ordinary challenges, such as those inherent in raising achild with a disability. A systems approach usingmixed methods is essential to understanding familyimpact and designing family support services.

� The family environment influences the developmentand behavior of children with intellectual and devel-opmental disabilities. A large body of research hasshown that both direct variables, such as responsivitywithin the parent-child interaction or the valence ofmaternal expressed emotion, and indirect variables,such as family climate or financial resources, play im-portant roles in children’s development and behavior.

� The experience of having a child with an intellectualor developmental disability almost inevitably has a sig-nificant impact on the family. However, families varywidely in the ways they respond to disability and dif-ferent family members (e.g., mother, father, siblings)may respond differently.

� A wide range of child characteristics has been exam-ined in studies of family adaptation to disability. A

number of these variables (e.g., age, gender, severityof delay, type of disability) have been shown to berelated to specific dimensions of adaptation, but thefindings have been inconsistent across studies. How-ever, two child variables are consistently shown to beassociated with family adaptation across numerousstudies, disability types, and forms of family adapta-tion—child behavior problems and child health. Moststudies show that positive family adaptation is muchmore difficult to achieve when children exhibit a highrate of behavior problems and are in poor health.

� The nature and quality of social support available tofamilies and family members has been repeatedlydemonstrated as critical to positive adaptation. Socialsupport comes from a variety of sources both proximal(e.g., spouse, in-laws, parents) and distal (e.g., friends,religious institutions, parent support groups, commu-nity services) to the family. Studies incorporating bothsimple correlational analyses and more complex struc-tural equations modeling consistently show that posi-tive family adaptation, as measured by a wide range ofvariables, is more likely to occur for individuals orfamilies that have strong informal support systems.

� Formal interventions and professional services are avail-able to support families, and some programs, such asearly intervention programs for children with disabil-ities are increasingly being challenged to show not onlythat these programs have been beneficial for children,but that they have also promoted better outcomes forfamilies. Research has been mixed with regard towhether services and professional supports result inbenefits for families, with some indication that informalsupports are more important predictors of family well-being. However, reviews in this volume clearly showthat appropriate training, support, and help giving prac-tices can improve maternal styles of interacting withtheir children to enhance language and cognitive devel-opment, decrease depressive symptoms and other formsof psychological distress, and improve self-efficacybeliefs and other important family outcomes.

� Families exist in cultural and socio-political contextsthat influence their beliefs, perceptions, and practices.A wide range of sociocultural studies, using varied the-ories and methods, have shown that cultural and socio-political contexts shape families’ coproduction of

*Correspondence to: Donald B. Bailey, Jr., Ph.D., RTI International, 3040 Corn-wallis Rd., Research Triangle Park, NC 27709. E-mail: dbailey@rti.orgReceived 30 August 2007; Accepted 30 August 2007Published online in Wiley InterScience (www.interscience.wiley.com).DOI: 10.1002/mrdd.20168

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIESRESEARCH REVIEWS 13: 291 – 292 (2007)

' 2007Wiley -Liss, Inc.

meanings and practices relatedto intellectual disability; families’experiences, responses, accom-modations and adaptations todisability, and how their under-standings and experiences areshaped within larger social insti-tutions and inequities, such aspoverty and minority status.

Research with children and adultswith developmental disabilities is a chal-lenging endeavor, requiring researchersto consider a variety of domains, con-texts, and formats of assessment. Theseissues are also present in family research,but are considerably more complicated.As a result, the vast majority of ‘‘family’’research might be better characterizedas ‘‘maternal’’ research. But families nec-essarily include more than one individ-ual. The information gathered oftenaddresses some aspect of the relationshipbetween two or more family members.Laboratory paradigms to assess familiesare limited in both scope and generaliz-ability, but direct observation of familylife and family experiences is expensiveand sometimes intrusive. As a resultfamily data are often limited to inter-views or surveys, and although theseprovide important information, issuesremain as to the extent to which theyreflect actual family function. Familyassessments can intentionally or unin-tentionally probe sensitive topics thatmany families consider to be private,personal, and laden with values andemotion. And because participating ininterviews or completing written sur-veys can be time consuming and emo-tionally draining, frequent and repeatedassessments of families over time can bean imposition on family life and jeop-ardize family participation in researchstudies. Ultimately the study of familiesmust rely on a mixture of researchmethods, always considering parentbeliefs and perceptions. Research suchas studies showing that perceived sup-port from one’s spouse is more predic-tive of positive maternal adaptation thanthe actual quantity of support receivedreinforces the key role that beliefs and

perceptions play in family adaptation todisability.

Family research also exists in acertain ecology and its focus and meth-ods are shaped by the context in whichthe research occurs. For example, in the1950s, most individuals with intellectualdisability were institutionalized, soresearch on families living with a childwith a disability was virtually nonexis-tent. Today, research is often based onthe assumption that the child is living athome and thus focuses on family adap-tations and accommodations to that ex-perience. Likewise, 30 years agoresearch on the challenges that familiesexperience in seeking childcare for theiryoung children with disabilities was vir-tually nonexistent, as few mothersworked and children with disabilitieswere rarely placed in regular childcaresettings. Today, employment of mothersof young children is the norm, muchresearch has documented the challengesthat families of children with disabilitiesexperience in finding acceptable childcare, and numerous models have beendeveloped to help families find high-quality childcare and to provide thetraining and support childcare providersneed to be able to appropriately carefor children with disabilities. Finally, 20years ago, family consequences of inher-ited forms of intellectual disability werenot a major research issue, as few suchdisorders were known. Today, the psy-chological and social impact on familiesof disorders such as fragile X syndromegenerates the need for research on theconsequences of inherited forms of dis-ability on individual family members,family relationships and processes, andlarger systems. As more inherited andgenetic causes are identified, familieswill increasingly have access to informa-tion about their own genetic makeupand risk. They will be faced with thechallenge of learning about the geneticnature of their child’s condition, a com-plicated enough task in a single genedisorder such as fragile X, but one thatbecomes much more difficult in disor-ders such as autism, which are polyge-netic and may carry an uncertain risk

for expression or transmission. The fullramifications for families of this knowl-edge are as yet relatively unexplored,but have implications for individual’sidentity or self-concept, the meaningand significance of family and kin, andmoral and ethical decisions. With theexpansion of testing for genetic abnor-malities, families will increasingly beinvolved in debates on testing for repro-ductive planning, who should beallowed to know their genetic makeup,and how much detail is desirable. Thesediscussions will have direct implicationsfor families and will likely impact thempsychologically and socially in ways wehave only just begun to understand.

Each paper in this volume ad-dresses future directions in familyresearch. Although some recommenda-tions are specific to the topics reviewed,several consistent themes emerge. Thereis a tremendous need for longitudinalresearch to understand how family ad-aptation changes over time and inresponse to events both within and out-side the family. Families from diversecultures and ethnic groups are under-represented in family studies, despitethe powerful influence of culture onfamily beliefs, values, and practices. Anew generation of ‘‘gold standard’’assessment tools and procedures isneeded to capture the scope and depthof family adaptation and how adaptationvaries within and across family mem-bers. More sophisticated studies basedon larger samples of families are neededto gain a better understanding of therange of risk and protective factors thatboth challenge and sustain families, andthe variables that serve as mediators andmoderators of family adaptation. Finally,in addition to studies of individual fam-ily members, creative analytic strategiesare needed to combine data from multi-ple sources and multiple family mem-bers to address the question of whetherit is meaningful to ask questions abouthow a whole family adapts.

—Donald B. Bailey, Jr.*Guest Editor

292 MRDD Research Reviews DOI 10.1002/mrdd � Introduction: Families and Disability � Bailey