implementation of electronic shared decision-making support for early intervention

Conditions: Child Development Disorder; Development Delay

Summary: family-centered care is a best practice approach to delivering high quality early intervention (ei) services for children 0-3 years old with developmental needs. yet, family engagement in designing and monitoring their child's ei service plan is suboptimal. families need a valid, reliable, and useful tool to share in decisions about the scope of their child's ei service plan. the investigators will achieve a major advance in contributing occupational therapy expertise to improve family engagement when designing and monitoring their child's ei services. the investigators will test the use of an evidence-based electronic tool with families at one ei program, when the child is due for an annual review of progress in the program. the investigators will also gather input from families, practitioners, and program leadership to identify facilitators and barriers to its use in multiple ei programs. this project tries to test an innovation in how the investigators deliver family-centered and participation-focused care. study results will yield evidence for the effectiveness of the electronic intervention on parent activation, ei service plan focus, ei service use quantity, parent perceptions of ei service quality, and child functioning.

poor quality of care in early intervention (ei) is pervasive, particularly for vulnerable populations. sub-optimal outcomes are perpetuated within this federally-funded, state administrated program due to significant cuts in federal per child appropriations. optimizing ei outcomes will require ensuring the delivery of high value ei (i.e., providing services with the greatest reach, optimal outcomes, at the lowest cost). a lever to improve value-based ei is family-centered care, an evidence-based ei approach, which is grounded in family engagement and shared decision-making. regrettably, the systematic implementation of strategies to empower families in this role are suboptimal, perpetuating poor outcomes and the failure of family-centered care. more than half of all ei enrolled families lack sufficient tools to engage in shared decision-making with ei practitioners when designing and monitoring the ei service plan. therefore, if ei service quality and outcomes are going to be optimized, there is urgent need to equip families with a tool that will foster shared decision-making between the provider and family. as ei programs transition to electronic data capture systems for accountability and quality improvement, the implementation of evidence-based electronic assessments is a scalable strategy to strengthen family engagement in shared decision-making to design and monitor ei services. one evidence-based option is the young children's participation in environment measure (yc-pem) electronic patient-reported outcome (e-pro). the yc-pem e-pro has not been implemented into routine practice for families to communicate areas of participation difficulty for shared decision-making about intervention priorities. the first aim is to conduct a community-based pragmatic trial of the young children's participation and environment measure (yc-pem), a valid electronic patient-reported outcome (e-pro), at a single large, urban ei program to examine how this intervention is associated with: 1) ei service use breadth, intensity, and focus, 2) parent activation for shared decision making and engagement in ei services, 3) parent-reported ei service quality, and 3) gains in children's functioning. ei service coordinators will be randomized to intervention and control groups arms, and then eligible and interested parents on their assigned caseloads will be assigned to the intervention and control groups as part of their child's annual evaluation of progress. intervention group subjects will complete the yc-pem e-pro before the child's annual intervention planning meeting. ei service plan focus (participation-focused goals in the plan), ei service amount (breadth and intensity), ei service quality (parent-reported activation for shared decision-making to design ei services and parent satisfaction with family-centeredness of ei service delivery), and child functioning will be evaluated via electronic records and patient-reported outcomes data collected at baseline, and 4 weeks, 6 months, and 12 months. aim 1. examine the effects of the yc-pem e-pro intervention on ei stakeholder outcomes. (aim 1a). examine the effects of the yc-pem e-pro on ei parent activation, parent engagement in ei services, service plan focus, and service use breadth and intensity. the investigators will test two hypotheses in this first sub-aim. as compared to children receiving usual ei care, intervention group subjects will: h1: report higher activation for shared decision-making and parent engagement when planning and monitoring the child's ei care within 12 months; h2: receive a greater breadth and intensity of participation-focused ei services within 12 months. (aim 1b). examine the effects of the yc-pem e-pro on parent report of ei service quality. as compared to usual care subjects, the investigators expect that parents in the intervention group will report greater satisfaction with: h1: enabling and partnership; h2: general and specific information exchange for shared decision-making; h3: coordinated and comprehensive ei care; and h4: respectful and supportive ei care. (aim 1c). examine the effects of the yc-pem e-pro on child functioning. as compared to usual ei care, intervention group children will: h1: demonstrate greater developmental gains, as measured by state-mandated and norm-referenced developmental tests done at ei entry and 12 months. h2: demonstrate greater gains in functional skills, as measured by state-mandated outcomes data at ei entry and 12 months.

Eligibility criteria:
inclusion criteria: * caregiver identifies as a parent or legal guardian of a child enrolled in early intervention * caregiver is at least 18 years old * caregiver reads, writes, and speaks english * caregiver has internet and telephone access * caregiver has a child who has received early intervention services for 3 or more months exclusion criteria: * caregiver is not the parent or legal guardian of a child enrolled in early intervention * caregiver is 0-17 years old * caregiver does not read, write, or speak english * caregiver does not have internet or telephone access * caregiver does not have a child who has received early intervention services for 3 or more months

Keywords: early intervention participation shared decision-making electronic family-centered care