Impact of Early Hearing Impact of Early Hearing Detection on Family Detection on Family

Functioning and DecisionsFunctioning and Decisions

2005 Early Hearing Detection and Intervention 2005 Early Hearing Detection and Intervention Conference Conference

Atlanta, GeorgiaAtlanta, Georgia

Carol Croyle, M.S., Sarah Wainscott, M.Ed., Carol Croyle, M.S., Sarah Wainscott, M.Ed., Marilyn Sass-Lehrer, Ph.D., & Patricia Spencer, Ph.D.Marilyn Sass-Lehrer, Ph.D., & Patricia Spencer, Ph.D.

Research TeamResearch Team

Marilyn Sass-Lehrer, Project DirectorMarilyn Sass-Lehrer, Project Director Carol Croyle, Researcher Family FunctioningCarol Croyle, Researcher Family Functioning Sarah Wainscott, Researcher- Decision MakingSarah Wainscott, Researcher- Decision Making Patricia Spencer, Research ConsultantPatricia Spencer, Research Consultant Beth Benedict, Research ConsultantBeth Benedict, Research Consultant Amy DiGaudio, Research AssistantAmy DiGaudio, Research Assistant

Funding provided by Gallaudet Research Institute Funding provided by Gallaudet Research Institute Priority Grant ProgramPriority Grant Program

Focus of Newborn Hearing Focus of Newborn Hearing Screening & Early Intervention Screening & Early Intervention

Research ProjectResearch Project Families’ experiences through EHDIFamilies’ experiences through EHDI Families’ perceptions of how EHDI has Families’ perceptions of how EHDI has

effected family functioningeffected family functioning Families’ perceptions of decision makingFamilies’ perceptions of decision making

CommunicationCommunication TechnologyTechnology ServicesServices

Family involvement in Early InterventionFamily involvement in Early Intervention Child communication outcomes Child communication outcomes

Rationale for StudyRationale for Study

UNHS widely established UNHS widely established Limited knowledge of what works for familiesLimited knowledge of what works for families Research indicatesResearch indicates

Families matter: Family well-being related to Families matter: Family well-being related to improved parent-child interactions, better child improved parent-child interactions, better child outcomesoutcomes

Decisions matter: Source of stress for families, Decisions matter: Source of stress for families, deliberate and supported decisions related to deliberate and supported decisions related to better child and family outcomes better child and family outcomes

Family involvement mattersFamily involvement matters Child Outcomes: Communication developmentChild Outcomes: Communication development

Goals for PresentationGoals for Presentation

Describe scope, background, & purpose of Describe scope, background, & purpose of projectproject

Describe process for developing the Describe process for developing the instruments and data collection proceduresinstruments and data collection procedures

Summarize findings from a pilot testing of Summarize findings from a pilot testing of the instrumentsthe instruments Family BackgroundFamily Background Family Perspectives & PrioritiesFamily Perspectives & Priorities Family FunctioningFamily Functioning Family Decision-MakingFamily Decision-Making

Research StagesResearch Stages

Stage 1Stage 1 Review of related research -ongoingReview of related research -ongoing

Stage 2Stage 2 Pilot and define data collection instruments and protocolPilot and define data collection instruments and protocol

Stage 3Stage 3 Collect initial data on family functioning, decision-Collect initial data on family functioning, decision-

making, and child communication outcomesmaking, and child communication outcomes Stage 4Stage 4

Analyze data and describe resultsAnalyze data and describe results Stage 5Stage 5

Prepare proposal for longitudinal studyPrepare proposal for longitudinal study

Instrument and Data Instrument and Data CollectionCollection

Focus Group & Interviews with Families & Focus Group & Interviews with Families & Professionals - Spring 2004Professionals - Spring 2004

Focus group with 4 parents Focus group with 4 parents Interviews with 2 parentsInterviews with 2 parents Focus group with 5 professionalsFocus group with 5 professionals

Goal of Focus Groups & InterviewsGoal of Focus Groups & Interviews Learn about experiences of these families & Learn about experiences of these families &

professionalsprofessionals Obtain advice on focus of the studyObtain advice on focus of the study Obtain advice on design of the studyObtain advice on design of the study

Focus Groups & InterviewsFocus Groups & Interviews

Learn from Families & ProfessionalsLearn from Families & Professionals What aspects of EHDI process were both problematic; What aspects of EHDI process were both problematic;

effectiveeffective How experiences impact familiesHow experiences impact families How experiences impact the decisions they make How experiences impact the decisions they make How experiences impact family involvementHow experiences impact family involvement

Obtain advice aboutObtain advice about Critical questions to ask (e.g., ownership)Critical questions to ask (e.g., ownership) How best to recruit families for studyHow best to recruit families for study Incentives for participation Incentives for participation Format for obtaining information from familiesFormat for obtaining information from families Time commitmentTime commitment Other ideasOther ideas

Results of Focus Results of Focus Groups/InterviewsGroups/Interviews

Confirmed the need to investigate what works for familiesConfirmed the need to investigate what works for families Provided a snapshot of experiencesProvided a snapshot of experiences

Positive and NegativePositive and Negative Successes and ChallengesSuccesses and Challenges

Emphasized the common and unique experiencesEmphasized the common and unique experiences Empowering and supportive – expanded families’ networksEmpowering and supportive – expanded families’ networks

Suggestions:Suggestions: Incentives – need to believe their input would make a Incentives – need to believe their input would make a

differencedifference Keep surveys short and simpleKeep surveys short and simple Person-to-person or focus groupsPerson-to-person or focus groups In home or school In home or school Child careChild care

Development of InstrumentsDevelopment of Instruments

Demographic SurveyDemographic Survey Short and SimpleShort and Simple

Family Characteristics & PerspectivesFamily Characteristics & Perspectives Family Priorities & ConcernsFamily Priorities & Concerns Semi-Structured Interview ProtocolSemi-Structured Interview Protocol

Allows families to define their experiencesAllows families to define their experiences Probes for specific areas of family functioning Probes for specific areas of family functioning

and decision makingand decision making Selection of Communication Assessment Selection of Communication Assessment

Tools & ProtocolTools & Protocol

Participants Participants

Families with deaf or hard of hearing Families with deaf or hard of hearing infants/toddlers identified through infants/toddlers identified through NHSNHS

Families receiving early intervention Families receiving early intervention services by 6 months of ageservices by 6 months of age

Children 10 – 14 months of ageChildren 10 – 14 months of age Families identified through Families identified through

audiologists audiologists

Family FunctioningFamily Functioning

““Families exist to meet the individual and Families exist to meet the individual and collective needs of their members. The collective needs of their members. The tasks that families perform to meet these tasks that families perform to meet these needs are referred to as family functions.”needs are referred to as family functions.” Turnbull & Turnbull (2001)Turnbull & Turnbull (2001)

Family functioning is the interrelatedness Family functioning is the interrelatedness of the structural and interpersonal of the structural and interpersonal dynamics of the family to stresses, dynamics of the family to stresses, support, resources and coping styles.support, resources and coping styles.

Domains of Family Domains of Family FunctioningFunctioning

Family perspectivesFamily perspectives Family prioritiesFamily priorities Factors influencing day-to-day Factors influencing day-to-day

functioningfunctioning Time demandsTime demands FinancesFinances HealthHealth RelationshipsRelationships Collective and individual needs of familyCollective and individual needs of family

Impact of Child’s Hearing Loss Impact of Child’s Hearing Loss on Family Functioningon Family Functioning

More time commitmentsMore time commitments Scheduling difficultiesScheduling difficulties Time for selfTime for self Physical healthPhysical health Emotional energyEmotional energy Social relationshipsSocial relationships

Impact of Child’s Hearing Loss Impact of Child’s Hearing Loss on Family Functioningon Family Functioning

Marital relationshipMarital relationship Time for each otherTime for each other Appropriate childcareAppropriate childcare Emotional and intellectual energy Emotional and intellectual energy

expended on child’s needsexpended on child’s needs

Impact of Child’s Hearing Loss Impact of Child’s Hearing Loss on Family Functioningon Family Functioning

Relationships with familyRelationships with family Time restraintsTime restraints Lack of knowledge or understandingLack of knowledge or understanding Frustration with family-child interactionsFrustration with family-child interactions

Impact of EHDI: ObstaclesImpact of EHDI: Obstacles

InformationInformation InconsistentInconsistent ContradictoryContradictory IncompleteIncomplete

Professional “ownership”Professional “ownership” Deaf adultsDeaf adults

Anxious about making “the right” decisionAnxious about making “the right” decision Added program eventsAdded program events

Impact of EHDI: SupportsImpact of EHDI: Supports

Accommodating parents’ schedulesAccommodating parents’ schedules Deaf adultsDeaf adults FinancesFinances

Hearing aidsHearing aids Hearing aid batteriesHearing aid batteries Early intervention servicesEarly intervention services

Impact of EHDI: SupportsImpact of EHDI: Supports

Fostering social relationships among Fostering social relationships among familiesfamilies Providing structure for the childrenProviding structure for the children Expecting parents to remain on siteExpecting parents to remain on site Not forcing structure on the parentsNot forcing structure on the parents Allowing parents to establish and Allowing parents to establish and

maintain group culturemaintain group culture

How can EHDI professionals How can EHDI professionals support family functioning?support family functioning?

Provide clear and complete Provide clear and complete information in an unbiased manner.information in an unbiased manner.

Allow parents to make their own Allow parents to make their own choices.choices.

Provide technology and services at Provide technology and services at little or no cost to families.little or no cost to families.

Be aware of and acknowledge the Be aware of and acknowledge the time demands of families.time demands of families.

How can EHDI professionals How can EHDI professionals support family functioning?support family functioning?

Provide families an opportunity to establish Provide families an opportunity to establish relationshipsrelationships with each other. with each other.

Provide families opportunities to interact with Provide families opportunities to interact with Deaf adults.Deaf adults.

Include extended family members in the EHDI Include extended family members in the EHDI process.process.

Help families identify sources of support in Help families identify sources of support in childcare.childcare.

Don’t place families in a position of having Don’t place families in a position of having to defend their choices.to defend their choices.

Interrelatedness of Interrelatedness of Information, Family Information, Family

Functioning, and DecisionsFunctioning, and Decisions

Family FunctioningFamily Functioning

Family Decision MakingFamily Decision Making

InformationInformation

Family Context:Family Context:Each family has its own values, strengths,Each family has its own values, strengths,

priorities, and coping styles which impact the priorities, and coping styles which impact the wayway

choices are made on a daily basis, and the way inchoices are made on a daily basis, and the way inwhich information and challenges are addressed. which information and challenges are addressed.

Turnbull & Turnbull,Turnbull & Turnbull, 20012001

PrioritiesPriorities ResourcesResources Preferences Preferences StyleStyle

Family Context: Family Context: Observations impacting Observations impacting

decisions decisions Life Outlook: general sense of Life Outlook: general sense of

optimismoptimism Flexibility: openness to changeFlexibility: openness to change Approach to Problems: organization Approach to Problems: organization

style and sense of efficacystyle and sense of efficacy Knowledge: previous experience with Knowledge: previous experience with

hearing losshearing loss Relationships: management of people Relationships: management of people

& boundaries & boundaries

Gathering information: Gathering information:

Parents need accurate & complete Parents need accurate & complete information presented in a sensitive information presented in a sensitive

manner.manner.Luterman & Kurtzer-White, 1999Luterman & Kurtzer-White, 1999

Gathering Information: Gathering Information: ObstaclesObstacles

Initial information that is poorly Initial information that is poorly presented & inappropriate materialspresented & inappropriate materials

Contact with EI Contact with EI systemsystem that is “cold” that is “cold” Online information and literature that Online information and literature that

is strongly biasedis strongly biased Professional efforts to be non-Professional efforts to be non-

committal can be frustratingcommittal can be frustrating

Gathering Information: Gathering Information: SupportsSupports

Best information can come from Best information can come from experienced EI providersexperienced EI providers

Parents are a good source of Parents are a good source of informationinformation

Parents that are skilled & active seeker Parents that are skilled & active seeker of information of information

Opportunity to select information from Opportunity to select information from a variety of sources and develop a plana variety of sources and develop a plan

Decision MakingDecision Making

““Ultimately the Ultimately the effectiveness of effectiveness of family support servicesfamily support services will depend will depend upon the extent to which professionals upon the extent to which professionals establish trusting and collaborative establish trusting and collaborative relationships with families and provide relationships with families and provide services in ways that services in ways that enable families enable families to make decisions for to make decisions for themselvesthemselves.”.”

Bailey & Wolery, 1992Bailey & Wolery, 1992

Decision-Making: ObstaclesDecision-Making: Obstacles

Lack of systematic cooperation Lack of systematic cooperation between agenciesbetween agencies

Uncertainty of child’s progress and Uncertainty of child’s progress and needsneeds

““Newness” of EHDINewness” of EHDI

Decision-Making: SupportsDecision-Making: Supports

Availability of options and resourcesAvailability of options and resources Supportive professionals that allow Supportive professionals that allow

family decisions to evolvefamily decisions to evolve An initial, primary decision that An initial, primary decision that

guides subsequent choicesguides subsequent choices Strong “ownership” of the decisionsStrong “ownership” of the decisions

How can EHDI professionals How can EHDI professionals support decision-making?support decision-making?

Information provided should be accurate, Information provided should be accurate, complete, & specific to the child & familycomplete, & specific to the child & family

Recognize the contribution of family Recognize the contribution of family priorities, perspectives, resources & stylepriorities, perspectives, resources & style

Options should be varied and flexibleOptions should be varied and flexible Collaboration between professionals & Collaboration between professionals &

families across traditional boundaries families across traditional boundaries Cultivate respectful, trusting relationshipsCultivate respectful, trusting relationships

Exploring Family Functioning & Exploring Family Functioning & Decision Making: Next StepsDecision Making: Next Steps

Explore family functioning & decision-making Explore family functioning & decision-making of families in other “contexts”of families in other “contexts”

Examine the impact of the early identification Examine the impact of the early identification on family functioning and the decision processon family functioning and the decision process

Identify similar patterns in family functioning Identify similar patterns in family functioning and decision making across familiesand decision making across families

Explore the interrelatedness of decisionsExplore the interrelatedness of decisions Identify themes (ownership, primary decisions)Identify themes (ownership, primary decisions) Identify ways for EHDI systems to support Identify ways for EHDI systems to support

positive outcomes for infants and families positive outcomes for infants and families