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Christine Griffin

AHE 588 Fall quarter 2016


Research Proposal
A Qualitative study of Parent-to-Parent Support for Parents
Raising Children who are Deaf and Hard of Hearing
Research setting: Research interviewing will take place by phone of
parents living in urban and rural regions throughout Washington State.
Participants: Parents of young deaf or hard of hearing children who
are between the ages of birth to 5 years old.
Question: What are the factors parents of deaf and hard of hearing
children need to know about when considering whether to reach out to
parent-to-parent supports?
Purpose:
For the purpose of this study, the definition of parent-to-parent support
is defined as a program that matches parents of recently diagnosed
very young children one to one with trained parents of similar
experience of the new parent through the facilitation of a coordinator.
Parent to parent support can take place in person, via telephone or
using any on-line technology. Parent to parent support is not defined in
this study by on-line listserv, Facebook groups or where connections
and networks would be matched informally without a facilitator.
Washingtons States Department of Healths Best Practice Guidelines
for Deaf and Hard of Hearing Infants Entering Early Intervention, states,
"families will have opportunities to gain support and information from a
variety of individuals who are D/HH, and other parents of children with
hearing loss (e.g. parent mentoring program)". These best practice
guidelines were created based on studies that show improved outcomes
for infants who receive intervention prior to six months of age.
Furthermore, research of parent-to-parent support network for families
of children with a diagnosed disability or ongoing health care need
report that families receiving peer support have an easier time of
adaptation to the disability, and is a key process leading to
psychological well-being. (Albiner et al. 1998, p. 100)
In 2014 there were 83,295 births in Washington State with 624 infants
referred from initial hearing screening to further diagnostic testing.
From this group of 624 infants there were 156 diagnosed as deaf or
hard of hearing (EHDDI, 2015) between the ages of birth to 3

months. Sixty-six of those infants are documented as having entered


early intervention services. It is unknown of the remaining 90 infants if
they have entered early intervention under another qualifying category,
as in the case of multiple diagnoses, or if there were errors in the new
data reporting system itself.
The Guide By Your Side (GBYS) program specializes in offering family
support from trained Parent Guides to parents and caregivers of D/HH
children. Throughout the state stakeholders have identified this
program as the parent-to-parent support program for families of deaf or
hard of hearing children. In 2014 GBYS supported 10 families of infants
between the ages of birth to 3 years old. This means that almost all the
infants diagnosed in Washington were not connected to the Guide By
Your Side Program.
In this study we expect to explore the belief that professional (pediatric
audiologist, pediatricians, early intervention provider) referrals are the
main reason why parents seek parent support. Professional referral
involves sharing information about parent support programs with the
parent. Parents then consent to the parent support program contacting
them for the start of services to begin.
Another hypothesis that we will seek to investigate is that parents are
already connected to the support they need through informal networks.
Families may have well defined family and friends they can depend on
for support. Having a supportive community that is well intentioned is
wonderful, however, they may or may not have the knowledge needed
to help a parent make informed decisions regarding communication
options and service provision for the infant and his or her family during
this crucial time of development.
Lastly, urban settings in Washington are more advantageous for parents
to have better access to support groups and networks. Many of the
parent support programs operate from urban areas of our state. With
hearing loss considered low incidence (4 out of 1,000 births) families in
rural areas may find themselves the only members of their community
with a child diagnosed. To connect to another parent may mean making
special arrangements, using technology, and driving long distances to
networking events with other families of children with hearing loss.
With collected data we will determine the elements of information
families may require before making a decision to reach out to
community supports. By learning this information coordination of the
Washington State Guide By Your Side Program can work to change
organizational and systemic policy in order to support more families.

Research Design and Data Collection


Recruitment
The objective of this study is to show generalizability for families raising
deaf or hard of hearing children. For this study we are looking at
answering the question, What are the factors parents of deaf and hard
of hearing children need to know about when considering whether to
reach out to parent-to-parent supports?
A qualitative sampling of participants will be recruited as part of the
research design. Criterion sampling (GM&A, p. 142) participants who
meet the define criterion. In this case we want to gather a small
number of parents of children who are deaf or hard of hearing. To
narrow the field further the children must only have a single diagnosis
of deafness or hearing loss. In this way, parents will only look for deaf
and hard of hearing parent supports.
This study is aimed at families of all cultures who are raising a child
with only hearing loss as a disability factor. While it is clear a certain
number of these infants have additional disabilities and health care
needs it may be that many of these parents connect to other parent
supports where hearing loss is not a primarily concern. Thus, its
important to isolate hearing loss as the independent factor.
Interviews will be conducted with parents who have a young child, or
children, with a diagnosed hearing loss. These interviews will take
place by phone, or video phone in the case of connecting with a Deaf
parent, lasting between 20-45 minutes. Professionals (pediatric
audiologists and early intervention providers) working with these
families will help to identify and recruit these individual families and
help to connect the participants with the research team members to
help in fostering trust with the researchers.
This study will interview 24 identified families with half of the families
living outside of urban areas of our state.
Interviews of all participants will recorded, and video recorded due to
some families using visual sign language to communicate. Interviews
will be transcribed in addition to note taking during the interview.
Following each interview field notes will be written.
Interviewing
A set of questions will be determined and asked of all participants.
Interviews will be semi-structured and using a standardized interview
guide that will be determined by the research team with the assistance
of parent feedback.

The limitations of this study are that by the nature of this qualitative
study it may not represent all parents, such as the case in a
convenience sampling.
However, this study will provide a depth of knowledge from families to
identify salient themes to explore in future studies surrounding the topic
of parent support.
Data Analysis
The qualitative data collected will be coded to identify all themes
provided by the parent participants from reviewing the interview
transcripts, notes and field notes. To help display findings researchers
will complete a concept map of the final analysis.
Rationale
A qualitative design was chosen to gather and identify salient threads of
in depth information to help define the variables of what factors families
feel are important to parent-to-parent support. For some families it may
be well known and easily articulated, but for other families who may not
know what these supports are, or who have difficulty articulating
information, we felt it important to take the time exploring these
families responses.
Subsequently, qualitative research allows for more of an exploratory
view of a problem or question that assists in defining themes to find a
larger meaning. (GM&A, p. 15) Such as the nature of parent support
which is an intimate and personal way of connecting with one another
to discover more in depth and useful information.
In addition, allowing for different factors between rural and urban
families will provide equal opportunity of families across our state and
which will provide better applicability and transferability (GM&A, p.
395). Thus, two separate factors are explored; area in which families
live (urban or rural) and family support (connected or not connected).
Intention of Design
This study is designed with the intent of seeking information that can
be transferable to the great population of families of Deaf and Hard of
Hearing children. The hypothesis therefore is not to find ultimate truths,
but more generalizability among this population of families.
Semi-structured interview- specified questions to ask participants. To
avoid missing potentially helpful and more complex information,
questions will be offered in a way that participants can respond
informally. (GM&A, p. 386)
To improve communication during the interview, guidelines will be

maintained by interviewers. These guidelines include; Listen without


interrupting, accept silence to provide participants time to respond,
avoid any leading questions, ask for details to maintain participant
focus, ask questions is the response is unclear from participant, avoid
judgment and debating with the participant. (GM&A, p. 387)
No materials or artifacts will be collected by participants.
Data collection taking notes during interview plus audio and video
recorded provides a verbatim account of the session. (GM&A, p. 387)
To ensure validity responses from participants, triangulation will be
employed by the research team. This process will consist of using
multiple methods of data collection and coding to provide a complete
picture from participant responses. (GM&A, p. 393)

Data Collection and Analysis


The type of data collection for this study will be using audio-video
recording, rather than audio recording alone because some families
may only communicate using American Sign Language (ASL) which is
captured much better using video. In addition, notes and field notes will
be used to help gather data. This will help to ensure triangulation and
to crosscheck information. The strength in qualitative research lies in
collecting information in many ways. (GM&A, p. 393)
For formalizing data collection researchers will adhere to Wolcotts
Strategies, which include; Talk a little, listen a lot, record accurately,
begin writing early, let readers see for themselves, report fully, be
candid, seek feedback, write accurately. (GM&A, p. 394)
During the interviewing process the team will begin to analyze gathered
data to look at iterations before visiting the family and field notes will
be completed to narrow and define next steps. (GM&A, p. 466). In
addition, data recording and organizing techniques will commence to
keep track of information collected. This process will include, reading,
memoing, describing what is going on in the setting, and classifying
research data. (GM&A, p. 467)
One way to analyze findings from data collected is to identify themes
and looking at the big picture by using Concept Mapping. However, for
the purpose of this study researchers are hoping to obtain all of the
themes rather than one final reason for lack of referrals. So, in this
case coding data is the preferred strategy to analyze the information.
By coding the data the information in broken down into patterns and
categorizing into themes. (GM&A, p. 469) The final step will be to

display the salient themes from respondents using concept mapping.


(GM&A, p.473) By utilizing concept mapping readers of the study can
view the results visually.
Precautions
Participants will be asked to sign an informed consent (GM&A, p. 119)
form that will explain possible consequences. Such consequences from
this type of study could threaten a familys right to privacy and
potentially offer an opportunity that brings up challenging emotions.
Researchers on this study will use utmost precautions for keeping a
familys right to privacy intact. However, if a family does become
overly emotional to a question or by the interview process itself,
families will be offered resources for support as well as counseling if
needed.
Confidentiality
Confidentiality is an ethical consideration that our team will address to
minimize potential harm by providing an informed consent form
participants will sign before continuing with interviews. No harm to
participants is intended during this study.
To maintain confidentiality assigning a code, or alias, to each participant
will protect participants identities. This code will remain on the data
collected but participants personal information will not. Personal
information will remain secure and used for only contact purposes.

References
Ainbinder, J. G. et al. (1998). A qualitative study of parent to parent
support for parents of children with special needs. Journal Pf
Pediatric Psychology, 23(2), 99-109. Retrieved November 12,
2016, from http://jpepsy.oxfordjournals.org/
Best practice guidelines in early intervention for infants with hearing
loss. (2004, April 1). Retrieved from
http://www.doh.wa.gov/Portals/1/Documents/Pubs/344019_EHDDIIntrvProto.pdf
Gay, L., Mills, G., & Airasian, P. (2012). Educational research:
Components for analysis and applications (Tenth ed.). Upper
Saddle River, New Jersey: Pearson Education.

Henderson, Rebecca, "Parent-to-Parent Support for Parents of Children


who are Deaf or Hard of Hearing: A Conceptual Framework"
(2015). Electronic _esis and Dissertation Repository. Paper 3116.
Washington State Dept. of Health, Early Hearing-loss Detention,
Diagnosis and Intervention program. EHDDI Flow Chart of
Newborn hearing screening, diagnosis and intervention. (2014)
Retrieved from Washington State Stakeholder EHDI Meeting,
March 2015