Impact of Early Hearing Detection on Family Functioning and Decisions

1. Impact of Early Hearing Detection on Family Functioning and Decisions 2005 Early Hearing Detection and Intervention Conference Atlanta, Georgia Carol Croyle, M.S., Sarah Wainscott, M.Ed., Marilyn Sass-Lehrer, Ph.D., & Patricia Spencer, Ph.D.

2. Research Team • Marilyn Sass-Lehrer, Project Director • Carol Croyle, Researcher Family Functioning • Sarah Wainscott, Researcher- Decision Making • Patricia Spencer, Research Consultant • Beth Benedict, Research Consultant • Amy DiGaudio, Research Assistant • Funding provided by Gallaudet Research Institute Priority Grant Program

3. Focus of Newborn Hearing Screening & Early Intervention Research Project • Families’ experiences through EHDI • Families’ perceptions of how EHDI has effected family functioning • Families’ perceptions of decision making • Communication • Technology • Services • Family involvement in Early Intervention • Child communication outcomes

4. Rationale for Study • UNHS widely established • Limited knowledge of what works for families • Research indicates • Families matter: Family well-being related to improved parent-child interactions, better child outcomes • Decisions matter: Source of stress for families, deliberate and supported decisions related to better child and family outcomes • Family involvement matters • Child Outcomes: Communication development

5. Goals for Presentation • Describe scope, background, & purpose of project • Describe process for developing the instruments and data collection procedures • Summarize findings from a pilot testing of the instruments • Family Background • Family Perspectives & Priorities • Family Functioning • Family Decision-Making

6. Research Stages • Stage 1 • Review of related research -ongoing • Stage 2 • Pilot and define data collection instruments and protocol • Stage 3 • Collect initial data on family functioning, decision-making, and child communication outcomes • Stage 4 • Analyze data and describe results • Stage 5 • Prepare proposal for longitudinal study

7. Instrument and Data Collection • Focus Group & Interviews with Families & Professionals - Spring 2004 • Focus group with 4 parents • Interviews with 2 parents • Focus group with 5 professionals • Goal of Focus Groups & Interviews • Learn about experiences of these families & professionals • Obtain advice on focus of the study • Obtain advice on design of the study

8. Focus Groups & Interviews • Learn from Families & Professionals • What aspects of EHDI process were both problematic; effective • How experiences impact families • How experiences impact the decisions they make • How experiences impact family involvement • Obtain advice about • Critical questions to ask (e.g., ownership) • How best to recruit families for study • Incentives for participation • Format for obtaining information from families • Time commitment • Other ideas

9. Results of Focus Groups/Interviews • Confirmed the need to investigate what works for families • Provided a snapshot of experiences • Positive and Negative • Successes and Challenges • Emphasized the common and unique experiences • Empowering and supportive – expanded families’ networks • Suggestions: • Incentives – need to believe their input would make a difference • Keep surveys short and simple • Person-to-person or focus groups • In home or school • Child care

10. Development of Instruments • Demographic Survey • Short and Simple • Family Characteristics & Perspectives • Family Priorities & Concerns • Semi-Structured Interview Protocol • Allows families to define their experiences • Probes for specific areas of family functioning and decision making • Selection of Communication Assessment Tools & Protocol

11. Participants • Families with deaf or hard of hearing infants/toddlers identified through NHS • Families receiving early intervention services by 6 months of age • Children 10 – 14 months of age • Families identified through audiologists

12. Family Functioning • “Families exist to meet the individual and collective needs of their members. The tasks that families perform to meet these needs are referred to as family functions.” • Turnbull & Turnbull (2001) • Family functioning is the interrelatedness of the structural and interpersonal dynamics of the family to stresses, support, resources and coping styles.

13. Domains of Family Functioning • Family perspectives • Family priorities • Factors influencing day-to-day functioning • Time demands • Finances • Health • Relationships • Collective and individual needs of family

14. Impact of Child’s Hearing Loss on Family Functioning • More time commitments • Scheduling difficulties • Time for self • Physical health • Emotional energy • Social relationships

15. Impact of Child’s Hearing Loss on Family Functioning • Marital relationship • Time for each other • Appropriate childcare • Emotional and intellectual energy expended on child’s needs

16. Impact of Child’s Hearing Loss on Family Functioning • Relationships with family • Time restraints • Lack of knowledge or understanding • Frustration with family-child interactions

17. Impact of EHDI: Obstacles • Information • Inconsistent • Contradictory • Incomplete • Professional “ownership” • Deaf adults • Anxious about making “the right” decision • Added program events

18. Impact of EHDI: Supports • Accommodating parents’ schedules • Deaf adults • Finances • Hearing aids • Hearing aid batteries • Early intervention services

19. Impact of EHDI: Supports • Fostering social relationships among families • Providing structure for the children • Expecting parents to remain on site • Not forcing structure on the parents • Allowing parents to establish and maintain group culture

20. How can EHDI professionals support family functioning? • Provide clear and complete information in an unbiased manner. • Allow parents to make their own choices. • Provide technology and services at little or no cost to families. • Be aware of and acknowledge the time demands of families.

21. How can EHDI professionals support family functioning? • Provide families an opportunity to establish relationships with each other. • Provide families opportunities to interact with Deaf adults. • Include extended family members in the EHDI process. • Help families identify sources of support in childcare. • Don’t place families in a position of having to defend their choices.

22. Interrelatedness of Information, Family Functioning, and Decisions

23. Family Context: Each family has its own values, strengths, priorities, and coping styles which impact the way choices are made on a daily basis, and the way in which information and challenges are addressed. Turnbull & Turnbull,2001 • Priorities • Resources • Preferences • Style

24. Family Context: Observations impacting decisions • Life Outlook: general sense of optimism • Flexibility: openness to change • Approach to Problems: organization style and sense of efficacy • Knowledge: previous experience with hearing loss • Relationships: management of people & boundaries

25. Gathering information: Parents need accurate & complete information presented in a sensitive manner. Luterman & Kurtzer-White, 1999

26. Gathering Information: Obstacles • Initial information that is poorly presented & inappropriate materials • Contact with EI system that is “cold” • Online information and literature that is strongly biased • Professional efforts to be non-committal can be frustrating

27. Gathering Information: Supports • Best information can come from experienced EI providers • Parents are a good source of information • Parents that are skilled & active seeker of information • Opportunity to select information from a variety of sources and develop a plan

28. Decision Making “Ultimately the effectiveness of family support services will depend upon the extent to which professionals establish trusting and collaborative relationships with families and provide services in ways that enable families to make decisions for themselves.” Bailey & Wolery, 1992

29. Decision-Making: Obstacles • Lack of systematic cooperation between agencies • Uncertainty of child’s progress and needs • “Newness” of EHDI

30. Decision-Making: Supports • Availability of options and resources • Supportive professionals that allow family decisions to evolve • An initial, primary decision that guides subsequent choices • Strong “ownership” of the decisions

31. How can EHDI professionals support decision-making? • Information provided should be accurate, complete, & specific to the child & family • Recognize the contribution of family priorities, perspectives, resources & style • Options should be varied and flexible • Collaboration between professionals & families across traditional boundaries • Cultivate respectful, trusting relationships

32. Exploring Family Functioning & Decision Making: Next Steps • Explore family functioning & decision-making of families in other “contexts” • Examine the impact of the early identification on family functioning and the decision process • Identify similar patterns in family functioning and decision making across families • Explore the interrelatedness of decisions • Identify themes (ownership, primary decisions) • Identify ways for EHDI systems to support positive outcomes for infants and families