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

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

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

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

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

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

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

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

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

11. Participants Families with deaf or hard of hearing infants/toddlers identified through NHS Families with deaf or hard of hearing infants/toddlers identified through NHS Families receiving early intervention services by 6 months of age Families receiving early intervention services by 6 months of age Children 10 – 14 months of age Children 10 – 14 months of age Families identified through audiologists 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. 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) Turnbull & Turnbull (2001) Family functioning is the interrelatedness of the structural and interpersonal dynamics of the family to stresses, support, resources and coping styles. 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 perspectives Family priorities Family priorities Factors influencing day-to-day functioning Factors influencing day-to-day functioning Time demands Time demands Finances Finances Health Health Relationships Relationships Collective and individual needs of family Collective and individual needs of family

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

15. Impact of Childs Hearing Loss on Family Functioning Marital relationship Marital relationship Time for each other Time for each other Appropriate childcare Appropriate childcare Emotional and intellectual energy expended on childs needs Emotional and intellectual energy expended on childs needs

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

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

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

19. Impact of EHDI: Supports Fostering social relationships among families Fostering social relationships among families Providing structure for the children Providing structure for the children Expecting parents to remain on site Expecting parents to remain on site Not forcing structure on the parents Not forcing structure on the parents Allowing parents to establish and maintain group culture 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. Provide clear and complete information in an unbiased manner. Allow parents to make their own choices. Allow parents to make their own choices. Provide technology and services at little or no cost to families. Provide technology and services at little or no cost to families. Be aware of and acknowledge the time demands of 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 an opportunity to establish relationships with each other. Provide families opportunities to interact with Deaf adults. Provide families opportunities to interact with Deaf adults. Include extended family members in the EHDI process. Include extended family members in the EHDI process. Help families identify sources of support in childcare. Help families identify sources of support in childcare. Dont place families in a position of having to defend their choices. Dont 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 Priorities Resources Resources Preferences Preferences Style Style

24. Family Context: Observations impacting decisions Life Outlook: general sense of optimism Life Outlook: general sense of optimism Flexibility: openness to change Flexibility: openness to change Approach to Problems: organization style and sense of efficacy Approach to Problems: organization style and sense of efficacy Knowledge: previous experience with hearing loss Knowledge: previous experience with hearing loss Relationships: management of people & boundaries 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 Initial information that is poorly presented & inappropriate materials Contact with EI system that is cold Contact with EI system that is cold Online information and literature that is strongly biased Online information and literature that is strongly biased Professional efforts to be non-committal can be frustrating Professional efforts to be non-committal can be frustrating

27. Gathering Information: Supports Best information can come from experienced EI providers Best information can come from experienced EI providers Parents are a good source of information Parents are a good source of information Parents that are skilled & active seeker of information Parents that are skilled & active seeker of information Opportunity to select information from a variety of sources and develop a plan 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 Lack of systematic cooperation between agencies Uncertainty of childs progress and needs Uncertainty of childs progress and needs Newness of EHDI Newness of EHDI

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

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

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