Frequently Asked Questions relating to SNUG

Q. How do we know this will be valuable for families?
A. Williams et al. established a trial to test the value for siblings and parents of a one week residential over a less intense intervention. The value of a one week residential program over less intense interventions was highlighted in this study.
WILLIAMS et al. (2003) Journal of Pediatrics. 143(3):386-93 A community-based intervention for siblings and parents of children with chronic illness or disability: the ISEE study.

Q. Are there similar projects being delivered in your community or elsewhere?
A. In Sweden, one week residential programs are run for families in this situation twenty two weeks of every year. They have up to ten families attending the program for each of these weeks. The program has been in existence for over a decade and has proven to be effective in reducing stress and improving the well-being of parents of children with disabilities.
Visit the family program at Agrenska at www8.vgregion.se/mun-h-center/index3.html
The evaluation of their program is published at: DELLVE L et al (2006) Journal of Advanced Nursing 53(4), 392-402; Stress and well-being among parents of children with rare diseases: a prospective intervention study.

Q. Who is leading the project?
A. Peter King BDS MDS FICD is employed by Hunter New England Health Service as a specialist providing oral health services to people with special needs, and Kerrell Bourne BA Dip Soc.Sc. is Team Leader at The Family Action Centre. Peter was the first President of the Australian Society of Special Care in Dentistry and is on the editorial board of the International Journal of Disability and Oral Health. He has been employed through Babies of Romania to work in rebuilding orphanages in Romania and at Dohnavor Fellowship in India to assist in the oral health program in a rural community of Tamil Nadu. Peter is the chair of the SNUG steering committee.
Kerrell has extensive experience both as a practitioner and project manager of welfare and community programs. She has established programs for large NGOs plus government bodies. Currently she manages a series of projects for The Family Action supervising staff that support vulnerable families with a range of initiatives.

Q. Who will undertake the project work?
A. The Family Action Centre will employ a highly qualified Project Co-ordinator who has experience in family work specifically in the field of special needs. The Project Co-ordinator will be supervised by Kerrell Bourne and will meet regulary with the project steering committee.

Q. Why will the Family Action Centre (FAC) run the project?
A. The Family Action Centre (FAC) is a unique centre based in the Faculty of Health, University of Newcastle, which continues to demonstrate innovative forms of university-community engagement. Over its 20 year history, the FAC has developed an effective model which successfully combines community services, research, dissemination and advocacy. 
The FAC programs and research projects draw on resources from various sources including existing skills and resources of the wider community (e.g. volunteers to support isolated families and mentor young people). The partnership aspect of the FAC model has permitted multiple services in the community, including the FAC as a university centre, to be engaged with sensitive strategies such as working with individual families

FAC has a reputation as a national leader in strengthening families and communities. Positive links and partnerships have been developed and maintained with the government bodies that cover health and disability as well as excellent links have been forged with non-government organisations such as the Special Education Centre that support young families living with a disability. An excellent track record in developing innovative models of practice, working with vulnerable and harder to reach families whilst building social capital utilising the strengths within a community makes FAC the ideal place for such a project to be managed.

Q. How will this project make a lasting difference to the lives of children and young people in rural communities?
A. The child with special needs will benefit from increased access to specialist services. The siblings will leave the program with an enhanced understanding the special needs of their sibling. Both will have had the opportunity to meet other children in their circumstance. All children will also enjoy a holiday with their family in an environment where the parents have been supported, offered respite care and given the opportunity to spend time with all of their children. Families will have met and formed peer support networks that will contribute to their emotional support and long term well-being. As the family’s needs are met, all children in the family will benefit.

Q. Why will SNUG be in Newcastle?
A. Newcastle has specialist services with vast experience in addressing the needs of young people with special needs. These services are rarely available in remote areas. With a planned approach to their consultations, the most appropriate services can be accessed to help the child with their special needs.

Q. What facilities are at Myuna Bay?
A. The five families will be accommodated in a facility that provides private rooms and bathrooms and common recreational areas. All meals will be catered. Since each family will have a child with the same disability, a program will be developed that will focus on improving the families understanding of that disability. It will encourage an exchange of information between the families so that they may assist each other in managing family issues.

Q. What will the families do for the week?
A. By having five families at each camp where each has a child with a specific syndrome or disability in common, a program that caters to their needs can be designed. Programs for the child with the disability as well as the fathers, mothers and siblings will be run throughout the week. A recreation officer will co-ordinate activities for all of the children. Each family will have a volunteer to support them and to provide some respite care so that the parents can have some time alone.

Q. Are there other partners in the Project?
A. Yes:
Hunter New England Area Health Service
Participating specialists to provide services to children with special needs and increased co-ordinated care between GP's, specialists and allied health practitioners at no cost to families.
Northern NSW Oral Health Network
Provide assistance in locating families in Northern NSW with children with special needs; provide links with health service providers in rural Health Areas. This body has donated $10,000 towards the evaluation of the program and is a member of the Steering Committee.
Department of Speech Pathology (University of Newcastle)
Dr Bernice Mathisen, Speech Pathology Program Convenor and Senior Lecturer in Speech Pathology is a member of the Project steering committee. She will assist in the recruitment & training of volunteers to support the families whilst attending camps.
Families Supporting Families
This organistion was established by local families who have firsthand experience of the challenges faced when raising children with disabilities. They run support sessions, offer workshops and seminars and are a voice for families living with a child with special needs. Leeta Davies from Families Supporting Families is a member of the Project steering committee and represents this organisation in assisting us to focus on the needs of families with children with disabilities. They will also be involved in tailoring activities for the families to encourage networking of the families.
Camp Quality Newcastle Division
The local office of Camp Quality has provided the project steering committee with information regarding supporting siblings of the children living with a disability who attend the camps.

Q. How will the program be evaluated?
A. Kim Tiedeman MSC&D, DipEd, BA (Hons) will be coordinating the evaluation in line with the structure submitted to the Hunter New England Human Research Ethics committee. Ethics approval has been established (No. 6/12/13/4.03).
The process evaluation will utilize focus group discussions (FGD), semi-structured interviews and observation with all family participants during the residential. Parents will be asked before the residential to complete a short questionnaire that will provide a basis of comparison for the impact evaluation. HNE Health service providers will also be contacted at this time and interviewed in relation to their involvement in the program. The Program Officer and the volunteers will also be interviewed at this time to comment on their experience of the program. FGD's are designed to take between 30 minutes and one hour and semi-structured interviews approx 15-30 minutes. Schedules will be based on those used in the Agrenska program and others compiled specifically for the purposes of this evaluation research. A formative evaluation of this nature aims at clarifying target population needs, improving program operations, and enhancing service delivery for the purposes of ongoing implementation.
The impact evaluation will be conducted with participants of the program at six and twelve month intervals after the residential and involve semi-structured telephone interviews to determine what impact participation had on them in terms of implementation of new strategies, frequency of access to health providers, perceived benefits, social networks developed and whether they would participate again. Standardized questionnaires will include instruments measuring parental stress and general health. Records of service use will again be collected to compare against baseline data. Remote community health service providers will also be interviewed at these times to ascertain service use by participants and perceived benefits, implementation of new strategies in relation to specific clients and local health services, and professional benefits of participation in the program. Semi-structured interviews are designed to take approx 20 minutes. Schedules will be based on those used in the Agrenska program and others compiled specifically for the purposes of this evaluation research.