Tools for Building Patient, Caregiver and Family Engagement for Family Wellness

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What FamilyEQ (FEQ) L3C? Patient Home Advantage is an L3C for-profit corporation. PHA is a social innovation enterprise designed to radically improve the quality and quantity of support for families and caregivers who have a family member with special needs . . .  more than 1 in 5 families worldwide.

What is the origin and product development of the Family Resource Builder® Process (FRB30)?

FEQ original research: In 2010-11, an experienced PHA research team conducted an immersive, in-depth, year-long, ethnographic (in-home) research investigation with families who had a child with special needs (children ages 1- 11). The research focused on identifying and codifying the family’s unmet needs. The major, thematic findings from that research, supported by extensive literature research clearly revealed:

  1. Severe Family Social isolation & nominalization: from business, faith, education, and recreation.
  2. Caregiver’s intensive involvement in care giving practices: the family experienced a great loss of family & friend support, loss of income, increasing clinical depression & caregiver health problems, and emotional and physical fatigue. And,
  3. High financial and time-dependent stress resulting in a lifetime of restricted career opportunities for parents and caregivers, and compensating lifestyle changes – for the family member with special needs and for the parents.

Parents told us: “No one ever asked us about our needs!” And, “You took the time to come into our homes and see, feel and listen empathetically to our family needs.  That research experience with PHA allowed us to share our real family needs.”

Product Development based on the research: The FEQ product development team spent 3 years (2012 – 15) developing and beta testing many versions of Family Resource Builder® Engagement Sociometric Process. Dr. Gary Sweeten, a recognized global pioneer in education, family counseling, and community innovation along with James Donovan, a retired Procter & Gamble research fellow led the development work. Dr. Sweeten guided the technical content with his 50 years of evidence-based & practice-based skills.  James Donovan shaped the product use experience applying his 45+ years of engineering, consumer research, and product development skills.

FEQ Investment: Over the 6 years of research and development and testing of the Family Resource Builder® Engagement Process, PHA has invested more than $1million of grant and in-kind services, and more than 10,000 hours of resource time.

The Butler County Help Me Grow FRB30 Beta Testing – (2013-15)

HMG Goals: The Help Me Grow Part C/Early Intervention program has five principle goals in the Individuals with Disabilities Education Act (IDEA). Meeting family needs are implicit in these goals, but need to be explicitly met in order for the entire family to grow in health and wellness.

  • Enhance the development of infants and toddlers with disabilities;
  • Reduce the educational costs to society by minimizing the need for special education and related services;
  • Maximize the potential for individuals with disabilities to live independent lives;
  • Enhance the capacity of families to support the development of their children; and,
  • Enhance states’ ability to coordinate funding to provide services for infants and toddlers with disabilities.

The FRB30 process tools are built on evidence-based research and the premise that all positive change comes from interacting with authenticity, genuineness, respect, empathy and warmth. HMG SCs conduct their work with these principles in mind.

The Beta work and FRB30 Improvement results

The Butler County beta development work was sponsored by Suzanne Prescott, supervised by Laura Thiess and tested with 38 families by 13 SCs. Butler County families represented the full socio-demographic – Spanish-speaking, impoverished, single-parent, middle class, wealthy, et al.

The purpose of the beta testing was to improve the usability of the FRB30 tools in a real world professional environment, and to understand how the FRB30 tools could support the Evidence-based Early Intervention Practices being implemented state-wide.

The beta testing led to five (5) FRB30 usability, implementation, and outcome improvements. These are:

  1. A simplified FRB30 process that fits within the limited family and SC time availability yet yields a consistently effective family-centric (engagement) goals and action plans.
  2. Service Coordinators feeling and reporting their time, skills, and resources are doing an even better job because families can focus better (clearer and with less time involvement). SCs told us “I can use more of what I was trained to do.”
  3. A complimentary aid to the Early Intervention Practices problem-solving and goal accomplishment tools. The FRB30 process creates an emotionally safe, self-reflective family environment that allows families and caregivers to reveal sensitive, but critically important needs – like poor family support relationships, caregiver health needs, spiritual needs, household resiliency improvement, and et.al. al.
  4. A set of Best Practices that identify the best situational criteria for introducing the FRB30 process so that families and HMG will see the highest value accomplished.
  5. PHA training materials that add practical support and growth of the FRB30 process. These materials give PHA the capability to roll out the process statewide, nationwide, and potentially internationally.

Going Forward: The Family Resource Builder® can be a valuable approach to improving the health and wellness of a family who has a child with special needs.  Broad scale, regular (yearly) use by professionals who serve families can result in significant savings.

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