FAQs for Participating Professionals
What data will be collected in this study?
The research consists of three strands.
1. Children’s development will be assessed with regard to language, communication, play and social behaviour, motor and physical development and other developmental milestones. All parents will use the Early Support Monitoring Protocol to chart their child’s development. We will collect copies of the summative information sheet from this tool at six monthly intervals. In addition, families using BSL will be asked to complete a standardised BSL version of the MacArthur-Bates Communicative Development Inventory, developed by the project team.
2. More detailed studies will be carried out with a subset of approximately 40 of these families. These include interviews, semi-structured questionnaires and scale rating techniques. From these we will be able to i) understand families’ own definitions and understanding of what counts as quality intervention for them; and ii) explore parents’ changing perceptions of desired and expected outcomes for their deaf children. This evaluation will be carried out on an annual basis during home visits made by members of the research team.
3. Service providers in health, education and social care who work with families of pre-school children will be asked to detail the type and extent of support provided to participating families. Services vary in the type of ‘support’ they provide to families and deaf children. For example, the support may include modelling strategies for parents by the Teacher of the Deaf interacting directly with the child, or centre on advising and discussing strategies. Time might be spent focused on a family’s concerns in general, or be specifically directed to promoting the development of a child. Exactly what happens when a professional visits a family will be quantified and compared. This will help to give us a better understanding of sensitive family support.
What will service providers be asked to do?
Heads of LEA Sensory Support Services (or equivalent) will be asked to pass Project Information Packs (which the research team will supply) to the families of all children born after September 1st 2005 within the local authority and newly identified as having a 40dB or greater permanent bilateral hearing loss. It is important that the pack is given to all these families, since the aim is to recruit all deaf children born in England between 1.9.05 and 31.8.07 into the research. The information pack will contain details of the study and will explain to parents the issues surrounding consent and confidentiality. The pack will also explain what parents will be asked to do if they agree to take part. It will be made very clear to them what information will be collected about their child and from whom. A return slip will be included in the pack so that families who wish to take part can reply directly to the research team at the University of Manchester. It is only at this point that the research team will know the identity of those participating in the research.
LEA support services will be asked to encourage the families recruited to the study to use the ESMP. We will ask for copies of the completed summative ESMP information every six months. This process will require a copy of the summative sheet being sent to the research team by the professional in contact with the family. Any expenses incurred for this will be reimbursed.
LEA support services will also be asked to detail how much and what type of input is being given to each participating family including job descriptions, actual practice and responsiveness to family needs. The research team will seek audiological data from the child's audiology service and other relevant health and social care data from the appropriate services.
All aspects of the project will have the appropriate ethical approval.
What is the timescale of the study?
The recruitment process will start in February 2006 when information packs will be sent to Heads of Services. The information packs will be left unsealed to allow Heads of Services to see the contents and to add a covering letter if they so wish. Data will be collected at six monthly intervals at 6, 12, 18, 24 and 30 months of age, with no further babies being recruited after 31.8.07 and no further data being collected after August 2008 (unless the project is extended, as we hope it will be, but in that case it will be a 'new' study and new approvals would be sought).
How will language barriers be overcome and ‘hard to reach’ populations accessed?
It is essential that ‘hard to reach’ populations are accessed and recruited to this project. To help with this, the parent information, consent forms and all other recruitment materials will be available in community languages including BSL. Case study examples of how services are using the measurement tools with families for whom English is not the first language or have low literacy levels will be shared with all participating services.
How will the information collected be used in the future?
The results of this study will help us to understand the complex relationships between early development of deaf children and the interventions and support provided to the child and family, at a level of detail that has not been achieved previously. We hope that this understanding will enable services and families to make earlier, better informed choices and to predict with greater certainty 'what works for whom'. The information may help with service planning and allow professionals and families to feel confident that the support being provided is both justifiable and optimal. As outlined earlier, a long-term aim of this work is to develop an ongoing national database of outcomes for deaf children and their families and so it is hoped that the project will continue past the three years currently funded.
