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Journal of Family Social Work

ISSN: 1052-2158 (Print) 1540-4072 (Online) Journal homepage: http://www.tandfonline.com/loi/wfsw20

Characteristics and Trends in Family-Centered Conceptualizations

Pamela Epley , Jean Ann Summers & Ann Turnbull

To cite this article: Pamela Epley , Jean Ann Summers & Ann Turnbull (2010) Characteristics and Trends in Family-Centered Conceptualizations, Journal of Family Social Work, 13:3, 269-285, DOI: 10.1080/10522150903514017

To link to this article: http://dx.doi.org/10.1080/10522150903514017

Published online: 01 Jun 2010.

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Characteristics and Trends in Family-Centered Conceptualizations

PAMELA EPLEY Erikson Institute, Chicago, Illinois

JEAN ANN SUMMERS and ANN TURNBULL University of Kansas, Lawrence, Kansas

Early-intervention and early childhood professionals have long considered family-centered service delivery best practice. Exactly what family-centered practice means, however, remains unclear. The lack of consensus in defining family centeredness results in incongruence in the manner and degree to which professionals implement family centeredness. This review of the literature examines current conceptualizations of family-centered practice in an effort to determine whether there is a common definition; and, if so, how that definition has changed over the past decade. The authors found that, though the key elements of family cente- redness (i.e., family as the unit of attention, family choice, family strengths, family–professional relationship, and individualized family services) have remained consistent, the emphasis has shifted from the family as the unit of attention to family–professional relationship and family choice. Implications for early intervention practice and research are discussed.

KEYWORDS disability, early childhood special education, early intervention, families, young children

The concept of family-centered practice made an appearance in discussions about early intervention (EI) and early childhood special education (ECSE) in the early 1980s (Dunst, Trivette, & Deal, 1988; Shelton, Jeppson, & Johnson, 1989; Turnbull, Summers, & Brotherson, 1984). Since then, it has become an integral principle guiding the design and delivery of service models (Bailey,

Address correspondence to Pamela Epley, Erikson Institute, 451 N. LaSalle Ave., Chicago, IL 60654. E-mail: [email protected]

Journal of Family Social Work, 13:269–285, 2010 Copyright # Taylor & Francis Group, LLC ISSN: 1052-2158 print=1540-4072 online DOI: 10.1080/10522150903514017

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2001; Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004; Bruder, 2000; Hebbeler et al., 2007; McWilliam, Snyder, Harbin, Porter & Munn, 2000; Turnbull, Summers, Lee, & Kyzar, 2007) and personnel development (Granlund & Bjorck-Akesson, 2000; McWilliam, Tocci, & Harbin, 1998; Nelson, Summers & Turnbull, 2004). Since 1993, the Division of Early Child- hood (DEC) has recognized family-centered practice as the recommended model of service delivery for EI (McWilliam & Strain, 1993; Odom & McLean, 1993; Vincent & Beckett, 1993). DEC currently characterizes family centered- ness as a philosophy and practice that recognizes the centrality and enhances the strengths and capabilities of families who have children with disabilities (Trivette & Dunst, 2005).

The 1986 reauthorization of the Individuals with Disabilities Education Act (IDEA) embodied principles of family-centered practice in many ways. Congress established the Program for Infants and Toddlers with Disabilities (Part C of IDEA) in recognition of, among other things, ‘‘an urgent and sub- stantial need . . . to enhance the capacity of families to meet the special needs of their infants and toddlers with disabilities’’ (Education of All Handicapped Children Act, 1986, 1431(a)(4)). With the addition of Part C, IDEA authorized services to infants and toddlers with disabilities and their families for the first time. Moreover, by creating and requiring individualized family service plans (as opposed to Individualized Education Plans), Congress made explicit the expectation that EI provide supports and services to families of young children with disabilities. Advocates for families at the time hailed this policy as an important step forward for serving families and young children (Shelton et al., 1989).

A decade later, Allen and Petr (1996) maintained that ‘‘despite its broad use, the term family-centered still causes confusion because it is used by authors in different ways’’ (p. 58). In an effort to clarify the definition, Allen and Petr reviewed definitions of family centered across the disciplines of social work, health, and education. Based on a content analysis of 28 definitions in more than 120 peer-reviewed articles, Allen and Petr derived the following definition to reflect thinking of family centered across disci- plines: ‘‘Family-centered service delivery, across disciplines and settings, views the family as the unit of attention. This model organizes assistance in a collaborative fashion and in accordance with each individual family’s wishes, strengths, and needs’’ (p. 64). The list that follows identifies the six key elements of family centeredness and the percentage of articles they reviewed that included each of the elements: family as the unit of attention (100%), family choice (29%), family strengths (25%), family–professional relationship (36%), family needs (32%), and individualized services (32%). Family as the unit of attention is described as focus on the family with the recognition that children cannot be adequately served without considering the needs of their families. The entire family, therefore, ‘‘becomes a focus of assessment, planning, and intervention, even though the presenting

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concern may relate to only a part of the family’’ (p. 64). Family choice referred to the organization and provision of services in accordance to families’ wishes and choices. In family-centered service delivery, families are, whenever poss- ible, ‘‘the primary and ultimate directors of and decision makers in the care- giving process’’ (p. 65). Family strengths were defined as acknowledging, incorporating, and building upon the family strengths. Empowerment of families was also associated with the element of family strengths. Family– professional relationship was described as family members and professionals in equal partnership and included such concepts as equality, mutuality, and teamwork. The element of family needs entailed services offered and available to all family members with a holistic view of families’ ‘‘circumstances, con- cerns, and resources’’ (p. 65). Last, individualized services referred to assess- ment, goal setting, and interventions matched to the needs of each family.

Now, more than 20 years after the establishment of Part C services for infants and toddlers with disabilities and their families, the literature continues to include concerns about shortfalls in the full implementation of family-centered practice (Bruder, 2000; Campbell & Halbert, 2002; Murray & Mandell, 2004, 2006; Parette & Brotherson, 2004; Turnbull, Summers, Turnbull et al., 2007). Although policy and professional guidelines endorse family centeredness, researchers (Soodak & Erwin, 2000) and anecdotal accounts (Bruder, 2000; Lea, 2006; Rao, 2000) describe recent examples of parents’ dif- ficulties in forming partnerships with EI and early childhood professionals. Based on an analysis of Part C state-reported data, Turnbull, Summers, Turnbull et al. (2007) found that, though the percentage of families receiving family-focused services declined from 1994 to 2001, the percentage of families receiving child-focused services increased. Furthermore, research on parents’ perceptions of EI services also indicates a greater satisfaction with child- than family-focused services (Bailey, Scarborough, Hebbeler, Spiker, & Mallik, 2004; Hebbeler et al., 2007) and a gap between the services and supports fam- ilies receive and what they believe they need (Summers et al., 2007; Turnbull, Summers, Turnbull et al., 2007). These data raise questions about the pro- vision of family-centered practice in EI.

The purpose of this review was to examine (1) whether conceptualiza- tions of family-centered practice have changed over the last decade and (2) whether there is currently a commonly understood definition. A clear under- standing of how family-centered practice is defined in the literature is impor- tant for several reasons. First, it provides a starting point for reaching consensus among researchers, professionals, policy makers, and families about the meaning of family centeredness. Second, a clear understanding of family-centered practice provides guidance for a common set of compe- tencies for professionals, curricula for professional development, and standards for programs related to serving and supporting families. Finally, it provides a basis for evaluating the implementation and outcomes of family-centered practice. In this article, we (1) describe our method and

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framework for analysis, (2) present findings regarding the key elements currently included in definitions of family-centered practice, and (3) discuss implications for EI research.

METHOD

Search Process

To perform a comprehensive review of the literature on family-centered practice across the disciplines of education, social work, and health, we con- ducted computer searches of ERIC, psychINFO, Wilson Web, and Educator’s Reference Complete Database for articles published between 1996 and 2007. Keywords for the natural language search included famil� and cent� (trunc- ated to include all forms of the terms). Controlled language search terms included families, disabilities, early intervention, parent-teacher relation- ships, and young children. We then reviewed abstracts of articles matching the search terms and eliminated articles unrelated to early intervention, early childhood education, or the provision of services to children with disabilities or their families. Our initial search yielded a total of 177 articles. We evalu- ated articles for inclusion in this review using three preliminary criteria: the article was published in a peer-reviewed journal between 1996 and 2007, reported original research or perspective, and included a constitutive or operational definition of family centered. We excluded unpublished articles, doctoral dissertations, and presentations. Seventy-seven articles met these criteria. We then excluded seven response articles to Mahoney et al. (1999) and two responses to Bailey (2001) that responded to but did not necessarily present an original perspective. Of the remaining 68 articles, we excluded five that did not explicitly define family-centered practice. Although these five articles contained references to and descriptions of family-centered practice, we were unable to identify a specific definition that did not include our own interpretation and potential bias.

Coding

Examining the six elements of family-centered practice identified by Allen and Petr (1996), we found considerable overlap in the definitions and descriptions of family needs and individualized services. The component of family needs, for example, is described as family-centered services that take into account the ‘‘family’s circumstances, concerns, and resources’’ (p. 65) and allows for changes in family’s needs. Individualized services, on the other hand, are referred to as services matched to meet the needs and resources of each family. Due to the similarities inherent in these two elements, we combined family needs and individualized services. We then used the following five key elements as a framework for analyzing current

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definitions of family centeredness: (1) family as the unit of attention, (2) family choice, (3) family strengths, (4) family–professional relationship, and (5) individualized family services.

For purposes of accuracy and reliability, the senior author coded each article on two separate occasions within a time span of 2 weeks. Examples of items coded as family as the unit of attention include ‘‘family orientation’’ and ‘‘meet the needs of the entire family.’’ Definitions of family-centered practice that included ‘‘family control’’ and ‘‘parental decision making’’ were coded as family choice. We coded phrases such as ‘‘strengths-based perspec- tive,’’ ‘‘empowered and enabled’’ families, ‘‘promoting family capabilities and capacities,’’ and ‘‘strengthening family function’’ as family strengths. References to trust, respect for cultural diversity, and collaborative relation- ships were coded as family–professional relationship. Finally, examples of individualized family services include parent training, service coordination, support groups, and respite care. To assess reliability of coding, the second author randomly selected, read, and coded 25% of the articles using the same coding system as the primary investigator. Coding was consistent across coders at 95% with differences not being of a substantive nature.

FINDINGS

In reviewing the literature on family-centered practice, our intention was to examine current conceptualizations of family-centered practice and deter- mine how conceptualizations may have changed over the past decade. Consequently, we evaluated current definitions for the presence of the five key elements of family centeredness: family as the unit of attention, family choice, family strengths, family–professional relationship, and individualized family services. Comparing the presence of these elements in the education, social work, and heath literature, we found no substantial differences. There- fore, this section presents current conceptualizations of family-centered practice across all three fields.

Family as the Unit of Attention

In analyzing current conceptualizations of family-centered practice, we first examined the element family as the unit of attention. In addressing the family as a whole, family-centered service delivery recognizes that ‘‘children cannot be served appropriately without consideration of the family or families with whom they [live]’’ (Allen & Petr, 1996, p. 64). Therefore, to the extent necessary, assessments, Individualized Family Service Plan (IFSP) develop- ment, and interventions must focus on the concerns and needs of the entire family (Allen & Petr). Of the 63 articles reviewed, nearly two thirds specifi- cally defined family centeredness as treating the family as the unit of

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attention. Although wording varied somewhat within articles, we considered a focus on families’ needs, improving family quality of life and well-being, and individualized family support and outcomes consistent with the concept of family as the unit of attention.

Other characterizations of families as the unit of attention included view- ing the family holistically (Erickson, Hatton, Roy, Fox, & Renne, 2007; Farmer, Clark, & Marien, 2003) and recognizing the family as the client (Guillett, 2002; Hamilton, Roach, & Riley, 2003; King, Rosenbaum, & King, 1997). Several defi- nitions of family centeredness referred explicitly to meeting the needs of fam- ilies unrelated to their child with a disability (Crais, Roy, & Free, 2006; Cress, 2004; McWilliam et al., 2000). McWilliam, Snyder, Harbin, Porter, and Munn (2000), for example, described family centeredness as, in part, attending to family concerns ‘‘whether or not related to the child’’ (p. 520). Moreover, Herman (2007), Larsson (1999), and Parette and Brotherson (2004) made spe- cific reference to parent and family outcomes in addition to child outcomes.

Family Choice

The second element of family-centered practice is family choice. Allen and Petr (1996) argued that family centeredness maximizes family choice in defining one’s family, making decisions regarding service delivery, determin- ing the nature of family–professional relationships, controlling confidentiality and sharing of information, and identifying primary concerns and goals. Of the articles reviewed, approximately three-fourths identified family choice as an element of family centeredness, often identified verbatim. Other frequent descriptions of family choice included family decision making and collaboration in identifying goals, practices, and interventions. Oper- ational definitions included family control over services=resources and families taking control over their lives.

Although we identified family choice in a large majority of articles, we also noted marked differences in the degree or extent of choice. Family choice ranged from parents as ultimate decision makers to collaborators in goal setting. Of the 63 articles reviewed, 10 identified families as the ultimate or key decision makers in a family-centered service delivery model. King et al. (1997), for example, asserted that parents have ‘‘ultimate control over decision making’’ (p. 41). Similarly, Fox, Dunlap, and Cushing (2002) described parental ‘‘control over where, when, and how the services will be provided and implemented’’ (p. 150). Although Herman (2007) did not explicitly convey ultimate parental control, he similarly described parental decision-making powers regarding all child services and interventions.

More commonly, conceptualizations of family choice emphasized parental involvement rather than ultimate choice in decision making. Nearly one third of articles identifying family choice as an element of family cente- redness described parents as partners in decisions regarding EI. We found

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frequent references to parents’ shared responsibility in making decisions regarding EI practices, goals, services, and interventions. Examples of shared decision making include parents as partners in making decisions (Farmer et al., 2003; Gallagher, Rhodes, & Darling, 2004; Koller, Nicholas, Goldie, Gearing, & Selkirk, 2006) and ‘‘family-driven decision-making’’ (Starble, Hutchins, Favro, Prelock, & Bitner, 2005, p. 48).

Although Allen and Petr (1996) conceptualized family choice across multiple dimensions, we found choice predominantly associated with deci- sions regarding identification of needs and concerns, appropriate interven- tions, and service delivery. Family choice was less frequently associated with the nature and extent of the family–professional partnership, families’ level of participation and decision making, defining one’s family, and infor- mation sharing. Of the articles identifying family choice as a key element of family-centered practice, we found mention of choice concerning the family– professional partnerships and level of parental participation only twice. What is more, we failed to find reference of family choice concerning defining one’s family or how and with whom information is shared.

Family Strengths

Family strengths, the third key element in the analysis of family centeredness, entail a commitment to and respect for the strengths and capabilities of each family member (Allen & Petr, 1996). This means not only considering family strengths, but also ‘‘incorporating them into intervention plans, and building upon them’’ (p. 65). This requires a change in how family members are perceived—from causes of problems and barriers to collaborative partners with positive attributes, abilities, and resources (Allen & Petr, 1996).

We identified family strengths as a component of family-centered practice in approximately one half the articles. References included a strengths-based perspective and acknowledging, promoting, or focusing on child and family strengths. Descriptions such as empowering and enabling families, enhancing families’ capabilities and competencies, strengthening family functioning, and recognizing the unique qualities in each family were also consistent with the element of family strengths. In addition to recognizing and building upon family strengths, McWilliam and colleagues (McWilliam et al., 1998; McWilliam et al., 2000) called attention to another aspect of strengths-based perspective: enhancing families’ confidence and belief in their own abilities. This reflected Allen and Petr’s (1996) assertion that identification of strengths and opportunities for choice are intertwined. A belief in families’ strengths and decision-making capabilities by families and providers maximizes family choice and their sense of competency. Although slightly more than one half the articles recognized family strengths as a component of family-centered practice, only McWilliam and colleagues (McWilliam et al., 1998; McWilliam et al., 2000) included building families’

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awareness and confidence in their strengths into a strengths-based perspec- tive. While Koller et al. (2006) and Trivette and Dunst (2004) proposed family centeredness as a means of enhancing families’ feelings of compe- tency and confidence, they do so within the context of effective family– professional relationships rather than as a component of a strengths-based perspective.

Family–Professional Relationship

Family–professional relationship generally refers to the partnership between families and professionals. We found family–professional relationship in 90% of the definitions of family-centered practice. Collaborative partnerships, cul- tural responsiveness, information sharing, and ‘‘help-giving’’ practices were commonly cited examples of successful family–professional relationships. Respectfulness and sensitivity to families’ needs, honesty, developing mutual trust, listening, and understanding families’ perspectives were also noted. Other noteworthy examples of positive family–professional relationship included giving parents an optimistic view of the future (Bailey et al., 1998), offering families a sense of hopefulness by emphasizing strengths and progress (Cress, 2004; Winton & Bailey, 1997), and professional flexi- bility (Dunst & Bruder, 2002; Herman, 2007; Nelson et al., 2004; Starble et al., 2005). Collectively, these conceptualizations illustrate how EI providers develop relationships with and respond to many families’ concerns and needs through successful family–professional relationships.

Individualized Family Services

The final element we examined in definitions of family-centered practice was individualized family services. Family services that are individualized match the needs and resources of each individual family (Allen & Petr, 1996). Of the articles reviewed, almost one half mentioned family-focused services to meet specific family needs. These encompassed services led by families and those led by professionals. Cited most frequently were services led by families such as Parent to Parent support. The most commonly noted professionally-led services included service coordination, parent training, information, and education. Less frequently noted family services provided by professionals were respite care, family counseling, and professionals accompanying families to meetings and appointments.

References to other family services were limited or isolated. Bodner-Johnson (2001) and Hamilton et al. (2003), for example, discussed social and recreational activities for families. Additionally, Fox et al. (2002) and Truesday-Kennedy, McConkey, Ferguson, and Roberts (2006) referred to person-centered planning for families. Only two articles, Mahoney and

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Bella (1998) and Ridgley and Hallam (2006), referred to financial assistance. Last, Nelson et al. (2004) alone noted transportation as a family service.

DISCUSSION

The purpose of this review was to examine current family-centered concep- tualizations to determine whether there has been a change in recent years and if there is a commonly understood current definition. We draw themes from the data to address these two purposes, identify implications for EI research, and highlight limitations of this review.

Past and Current Conceptualizations of Family-Centered Practice

The key elements of family-centered practice identified a decade ago remain fundamental to current conceptualizations. The emphases, however, appears to have changed. The element of the family as the unit of attention has decreased; family choice, family strengths, and family relationships have increased, and family services has stayed about the same. Allen and Petr (1996) identified the family as the unit of attention as the most frequently emphasized element; whereas the current element most frequently empha- sized is family–professional relationship. Although we have no data that directly addresses the reason for the decreased emphasis on the family as the unit of attention, we conjecture that this decrease is consistent with an overall downward trend from 1994 to 2001 in the percentage of families who receive family-related supports and services in EI programs. Overall data on child and family services have indicated a downward trend for family services and an upward trend for child services (Danaher & Armijo, 2005). These findings and other related data on trends in providing services and supports to families of children during the early childhood years indicate that the major emphasis over the last decade has been on how families are treated (family choice, family relationship) as contrasted to what services are offered (Turnbull, Summers, Turnbull, et al., 2007). The trends reported in this article in terms of the decrease in family as the unit of attention also suggest a decrease in who in the family receives services. Clearly family support pro- grams delivered through early childhood programs are heavily focused on mothers as the sole family member of family intervention (Friend, Summers, & Turnbull, 2009).

Extent of a Commonly Understood Definition of Family-Centered Practice

Based on our data, given that 90% of the articles address family–professional relationship, we can confirm that this element is commonly accepted. Three

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other elements have a midrange extent of acceptance: family choice, family as the unit of attention, and family strengths. Given that only one third of the articles address individualized family services as an aspect of family-centered service, we conclude that this element is not commonly accepted.

We find the lack of inclusion of individualized family services as part of the definition of family-centered practice especially problematic. Federal data based on EI

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