Supporting Parents with an ID. Knowledge in practice in Uppsala County

Gunnel Janeslätt, Lydia Springer and Sandra Melander bring an insight into how this complex issue is approached by services in Uppsala, Sweden...

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swedish authors
  • Swedish parents with intellectual disability can face similar problems to Irish ones
  • Groups have been set up to find out how many people have problems, and what kind of problems they have, and then provide the right help to them
  • Information is provided to young people to understand what is involved.

Vulnerable children with vulnerable parents

Studies show that families where parents have cognitive difficulties, including intellectual disabilities (ID), are one of the most vulnerable groups in society. Both parents and their children often live under poor economic conditions, are socially isolated, have little or no access to a supportive network and often have poor mental and physical health. The children are at risk for neglect, accidents in the home and too little stimulation. There has been a general belief that this is a small group of children.

In 2008, a survey was completed in Uppsala County which found that there were at least 600 parents with cognitive difficulties and they had a total of 1,092 children. That amounts to approximately 1% of all children between 0-18 years of age in the County of Uppsala. A more recent study show that at least 4,050 children (aged 0-18 years) were born to women with ID (Reference 1). If children of parents with other cognitive difficulties were to be included, the number would be considerably more, confirming the first survey and also the need for further action to create support for these families.

The SUF-Resource Centre

In 2009, a political decision was then made to support a regional SUF-Resource Centre (SUF-RC). “SUF” stands for Collaboration-Development-Parenting. The objective of the centre was to reduce the marginalisation and exclusion of these families by providing professionals with proper tools to enable the targeted families to participate in a broader social context. Early intervention and support geared to the needs of the children and the parents was an important goal. The SUF-RC is now a very well-known resource centre, and is called upon to disseminate knowledge about these families throughout the country.

Some examples of what has been achieved so far

Collaboration groups, “SUF-groups”, are the basis for the development of new methods and knowledge. A SUF-group is composed of professionals within a local area, who come in contact with children and parents from the targeted families in their daily work. They represent such organisations as schools, healthcare agencies, disability agencies, social services, etc. The number of members in each group ranges from 8 to14 people. The groups meet regularly to discuss actions agencies need to take to increase the well-being of the families. This requires inter- and intra-agency collaboration. There are presently 60 locations in Sweden where SUF-groups have been established.

Support groups have been launched for children and their parents. These groups provide a meeting place both for children and parents where they can meet others in a similar situation. The purpose is to empower the children and parents by building on their strengths, focusing on prevention, offering positive learning opportunities and building networks with both private and professional contacts to provide support for children and parents.

Attachment patterns of children to mothers with intellectual disabilities (ID) are the subject of a research study that was initiated by the centre. Together with researchers from Uppsala University, data was collected for a matched comparison study that focuses on attachment patterns. The study results show that there is no relation between ID and poor attachment.

The vast majority (> 80%) of the children had an organised attachment representation. However, mothers with ID who had suffered elevated abuse/trauma/maltreatment during childhood were significantly more likely to have children who scored high on disorganisation and insecurity (Reference 2). These results help us know that we can no longer focus on the intellectual disability as being a primary underlying factor for poor parenting, but rather that it can be due to other issues that these parents often encounter difficulties.

A home-based parent training and support program, Parenting Young Children, is for parents with ID and is recently being spread in Sweden as a national research and development project that the centre is involved in together with Parenting Research Centre in Australia. PYC is an evidence-informed program, and the Australian results show improved quality of the home environment, decreased stress for the parents and increased parenting capacity (Reference 3).

Parenting on the outside is another method imported from Australia. It is a support group for parents with ID whose children have been placed in foster care (Reference 4). The program aimed for parents to receive support and be able to share their grief and loss through peer support. Within the group they gain information, ideas and resources about themselves as parents, as well as getting to explore and express feelings about their new parenting role. SUF-KC used the model utilising a tools manual, and have initiated a research evaluation of the project.

Making informed decisions about adult life using the Toolkit and Real Care Baby (RCB). Many times young people with ID have a desire to become parents. However, they are not always aware of what parenting would entail. SUF-RC is launching a new model for helping youths and young adults with ID to learn more about “children – what does it involve” in a concrete way. There are two parts to this package. In co-operation with the developer Marja Hodes, the “Toolkit, talking about children and parenthood” which was created in the Netherlands for that purpose, has been translated to Swedish (Reference 5). The other part is the use of Real Care Baby (RCB) simulator also called Baby Think It Over (BTIO). It is a doll in natural size that can be programmed with different day and night schedules at three different levels; easy, medium and hard. The simulator signals different needs and the caregiver must then acknowledge the needs, interpret them and respond to the signals of the simulator. Combined, these two methods form a new model to help youth with ID to make informed choice. A pilot study is in progress.

A reference group made up of parents with ID and other cognitive difficulties has been a part of the staff at the SUF-RC for the last few years. The experiences of these parents have proven to be invaluable, and they contribute to spreading knowledge about themselves and their children through lectures. By sharing their experiences, they help professionals recognise parents who have difficulties in managing time and understanding complicated information, with limited memory functions, and in this way give them ideas as how to best support parents. Many times these parents are afraid to accept support for themselves and their children, but by hearing directly from the parents themselves professionals become more secure and skillful in creating better co-operation with the parents.

The work of the SUF-RC in Uppsala County is ongoing. For eight years, the SUF-RC project has collected data, devised interventions, and created and disseminated knowledge about the needs of parents with cognitive difficulties and their children. The work has been intriguing, inspiring and rewarding – the need continues as great as ever.

The SUF-RC has four staff members: Sandra Melander (project coordinator, social worker), Lydia Springer (psychologist), Gunnel Janeslätt (researcher) and Laila Dahlström Stolpe (public relations).

References:

  1. Weiber I, Berglund J, Tengland PA, Eklund M. Children born to women with intellectual disabilities – 5-year incidence in a Swedish county. J Intellect Disabil Res. 2011;55:1078-85.
  2. Granqvist P, Forslund T, Fransson M, Springer L, Lindberg L. Mothers with intellectual disability, their experiences of maltreatment, and their children’s attachment representations: A small-group matched comparison study. Attachment & human development. 2014;16:417-36.
  3. Starke M, Wade C, Feldman MA, Mildon R. Parenting with disabilities Experiences from implementing a parenting support programme in Sweden. Journal of Intellectual Disabilities. 2013;17:145-56.
  4. Mayes R, Tozer R, Elder M. An innovative support group for parents with intellectual disabilities whose children have been removed. Developing Practice: The Child, Youth and Family Work Journal. 2011:58.
  5. Hodes MW. Toolkit, supporting future parents: ASVZ.nl. Available from: http://www.asvz.nl/kinderwensenouderschap/en/toolkit/.

The SUF-RC has four staff members:

Sandra Melander (project coordinator, social worker),

Lydia Springer (psychologist),

Gunnel Janeslätt (researcher) and

Laila Dahlström Stolpe (public relations).

 

You can find out more about this and other initiatives of SUF-RC at http://www.lul.se/sv/Kampanjwebbar/SUF-Kunskapscentrum/

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