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Article Excerpt
The purpose of this exploratory study is to identify facilitators and barriers to care coordination between medical and early intervention (EI) providers for children with special health care needs and their families. Fifty adults participated in one of six focus groups. Participants included parents/caregivers, pediatricians, hospital therapy providers, and EI providers. Guiding questions were designed to obtain participants perceptions. All focus groups were audiotaped and transcribed. Transcript analysis included identification of open codes, grouping into axial codes and using constant comparative methods in data analysis. The two primary researchers established interrater reliability ([kappa] = 0.85) before data analysis. The six themes that emerged from data analysis are as follows: (1) information exchange; (2) approaches toward child and family care; (3) supporting family social and emotional needs; (4) perceptions of service provider roles; (5) communication among parents and providers; and (6) understanding service delivery systems. Focus group participants suggested that provider roles should be defined and family and child strengths and needs should be addressed. Recommendations for improved care coordination were provided and include communication training and skill building and using technology to enhance communication and collaboration.
Keywords: care coordination, children with special health care needs, family and provider perceptions
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Approximately 13% to 18% of children in the United States under 18 years of age have special health care needs. For children aged five years or younger, approximately 7.8% have special health care needs (Newacheck, McManus, Fox, Hung, & Halfort, 2000; U.S. Department of Health & Human Services, 2004). Young children with special health care needs often receive a complex array of services to promote health and development including primary care and early intervention (EI) (McPherson et al., 1998; Perrin, 2002). In 2004, over a quarter of a million children (282,733) aged birth through three years received EI services in the United States. These services are targeted for children with or at risk for special health care needs and/or developmental delay (U.S. Office of Special Education Programs, 2005). A fully integrated and coordinated system of care for children with special health care needs does not currently exist in the United States despite legislation to address health and developmental needs in home, community and school environments, and support to promote coordinated models of care in primary practice and specialty clinics (American Academy of Pediatrics [AAP], 1999a; Individuals with Disabilities Education Act, 2004; Roberts, Behl, & Akers, 2004).
There is consensus among stakeholders in children's health care that a variety of services are needed by children with special health care needs, that services are best delivered using community-based, family-centered care, and services are more effective if delivered in a coordinated and culturally competent system (AAP, 2004; Consortium for Children and Youth with Disabilities & Special Health Care Needs, 2004; Harbin, McWilliam, & Gallagher, 2000; Nickel, Cooley, McAllister, & Samson-Fang, 2003). Notwithstanding, comprehensive care coordination is challenging since provider organizations, providers and families have different definitions and services for care coordination (AAP, 1999a; Bruder, 2000; Dinnebeil, Hale, & Rule, 1999; Harbin et al., 2004; Nickel et al., 2003; Park & Turnbull, 2003; Perrin, 2002; Roberts, Behl, & Akers, 2004).
In primary care settings, the focus is on medical services and child health outcomes. In these settings, care coordination is defined as a process of linking children with special health care needs and their families to needed resources and services to maximize a child's potential and optimize health care (AAP, 1999a). The AAP has published policies and recommendations defining the pediatrician's role in clinic and community settings, and for children with different developmental conditions (AAP, 1993, 1999b, 2000, 2001, 1999c, 2003, 1999d, 2004; Johnson & Kastner, 2005). Common themes across these policies are consistent with characteristics of the medical home model including accessible, continuous, comprehensive, coordinated, and family-centered care (AAP, 2004; Sia, Tonniges, Osterhaus, & Taba, 2004; Starfield & Shi, 2004; Strickland et al., 2004).
In EI settings, care is focused on family and community support and the provision of resources to promote child health and development. In these settings, care coordination is formally defined as service coordination or case management including "activities carried out by the service coordinator to assist and enable a child eligible under this part and the child's family to receive the rights, procedural safeguards, and services that are authorized to be provided under the State's early intervention program" (Early Intervention Program for Toddlers and Infants, Part C, 1998). Children enrolled in EI vary in the complexity and severity of their developmental or medical conditions or they may be at risk for delay. They are likely to be referred for services in their first year (38%), and many qualify for services because of speech and language delays (39%). EI providers include physical and occupational therapists, speech and language pathologists, early childhood educators, and social workers or psychologists (Scarborough et al., 2004).
A collaborative approach for care coordination is warranted when considering the differences in definitions and services provided in medical and EI settings. The biopsychosocial model provides a general theoretical approach for integration of services across settings because this model emphasizes patient care within a social context (Weston, 2005). More specifically, the family-centered care service delivery model provides a framework for effective care coordination for children with special health care needs and their families. Family-centered care emphasizes partnerships between parents and providers, recognizes parents as experts in their child's care, and highlights decision-making roles for families (Law et al., 2003; Rosenbaum, King, Law, King, & Evans, 1998). Characteristics of family-centered care are listed in Table 1 (McKean, Thurston & Scott, 2005; Rosenbaum et al., 1998).
The purpose of this exploratory study was to conduct focus groups to describe stakeholder's perceptions of the facilitators and barriers to care coordination between health or medical services and EI services for children with special health care needs and their families (Creswell, 1998; Sofaer, 1999). Focus groups are an effective method to gather data and stimulate inquiry into participants' experiences that may not occur with individual interviewing (Krueger & Casey, 2000; Morgan, 1997). Focus groups encourage discussion and expression of multiple opinions and ideas in a supportive environment, and encourage participants to listen to other points of view and reflect and respond to these views (Morgan, 1997). The stakeholders in this study included families, EI providers, pediatricians, and hospital therapy providers (hospital providers). A unique feature of this study design is the inclusion of multiple stakeholders who reflect the structure of the traditional health and EI team for most children.
METHOD
Participants
Fifty adults participated in one of six focus groups. Each focus group was comprised of only one stakeholder group to encourage discussion among members of a common group and decrease the possibility of limited discussion on the perceptions and actions of other stakeholders. The focus group participants were parents/ caregivers, pediatricians, hospital providers, community-based EI providers, and EI service coordinators. Sixteen parents participated in one of two parent focus groups based on convenience, and 34 providers participated in one of four provider focus groups based on profession.
Demographic information on parents is presented in Table 2 and information on providers is presented in Table 3. The primary inclusion criterion for parents was they must be legal guardians of one or more children aged five years or younger who had been or currently were in EI programs. Participating pediatricians were employed in both inpatient and outpatient services in a large urban tertiary care children's hospital that serves the local and regional area. Hospital providers were employed in the rehabilitation department (physical and occupational therapists and speech and language pathologists) of a large, nationally recognized children's hospital housed in an academic setting. The EI providers worked for local agencies in a large metropolitan area. EI service coordinators...
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