In Australia, a parliamentary committee is currently investigating the adequacy of out-of-home care arrangements. At a hearing held in the nation’s capital in April 2015, the committee heard that parents with disability often have their children removed straight after birth, with children ending up in foster care until the age of 18 years.

Research has also documented negative attitudes to pregnancy from family and professionals (Mayes et al., 2006), and the need for support for these parents to raise children a positive and supportive environment that meets their needs (Wilson, 2014).

Interventions for parents with intellectual disabilities have developed in two main areas: teaching parenting skills and strengthening the social relationships of parents (IASSID, 2008). In this study, the authors reviewed the evidence for both types of interventions to determine the quality of existing interventions and identify current gaps in research.

Methods

To find the relevant interventions, the authors searched for research papers using electronic databases. They limited their search to those papers written in English since 1999. They entered terms related to ‘parents’ and ‘intellectual disability’ into the selected databases and then searched the reference lists of all the papers they found.

Once they decided on which of the papers were relevant they summarised data from the papers, and also assessed the quality of the papers using a tool called the SIGN (2008) Framework.

The SIGN Framework provides checklists to assess study quality depending on the type of study design used. For example, the checklist for controlled trials included (but was not limited to) rating the extent to which the study addressed an appropriate and clear question,  and the use of standard, valid and reliable outcome measures.

For RCTs, the checklist also includes (but is not limited to) consideration of whether assessors were blinded about treatment allocation.

Results

The authors found seven papers that were relevant for their review. One of these was a randomised controlled trial (RCT), but the rest were ‘less controlled’ trials. Only two studies could be assessed using the SIGN framework, with the others not having a ‘robust’ enough design or methodology. However, given the small literature, the authors indicated they felt it was important to review all seven papers, so qualitatively assessed the quality of the five papers that couldn’t be assessed using SIGN.

In relation to social relationships, two interventions were found including

(1) groups that aimed to enhance relationships and self-concepts; and

(2) groups that aimed to improve psychological wellbeing.

Both studies found positive impacts but because of the methods of evaluation authors used, Wilson and colleagues indicated that the conclusions from these studies should be ‘interpreted with caution’.

In relation to parenting skills teaching, interventions
(1) taught basic childcare skills to parents;
(2) provided self-instructional materials for learning safety skills;
(3) involved a home-based parenting programme; and
(4) taught a curriculum-based program aiming to strengthen and improve the relationships of mothers with their children.

Additionally, an RCT evaluated an Australian-based Home Learning Programme that aimed to improve knowledge of managing home dangers, accidents and childhood illnesses. The first four studies offered promising results but their quality could not be evaluated using the SIGN framework.

Overall, Wilson and colleagues indicate that:

No firm conclusions can be drawn from the studies reviewed here. There were indicators that all of the parenting interventions reviewed were effective for some parents, although there were a number of factors which may have potentially biased the results.”

They list several methodological issues that limit the rigour of the studies reviewed, including (but not limited to) small sample sizes, the lack of or limited length of follow-up data, a lack of information about fathers with ID, lack of outcome data regarding the child.

Conclusions

The authors conclude that:

The review has highlighted that there is limited research in this important and complex area and that there is a need for further larger scale, controlled studies in order to provide clearer evidence about which components are effective, for whom and for how long, in interventions for parents with ID.

Strengths and Limitations

The authors have taken a sensible approach to the review of a limited literature. They assess the quality of studies using a standardised tool (the SIGN framework) where possible, and where studies don’t fit, they assess strengths and limitations qualitatively.

This approach helps us to understand what ‘less rigorous’ studies have nonetheless done well – given how costly and time intensive RCTs and even less controlled studies can be, it is pragmatic to understand we need to start somewhere.

Wilson and colleagues do not offer a discussion of the strengths and weaknesses of their own review. Issues that typically affect systematic reviews include limiting the scope of review to English-only papers (although resourcing issues often preclude translation); missing papers due to the keywords used (although it is promising that the authors only found 1 additional paper through their search of reference lists).

Overall, this is a sturdy review drawing attention to an overlooked topic.

Summary

To better support parents living with intellectual disability, support that is designed to strengthen their social relationships and improve their parenting skills are important. This review has highlighted that few rigorous evaluations of programmes exist, which makes it difficult to inform practice.

More studies are needed, particularly those that have the ability to capture outcomes for the parents and children involved, over time.

It would also be interesting to find out more about how to change society’s attitudes to parents with intellectual disability, so that support is not limited to those paid to offer it.

Links

Wilson S, McKenzie K, Quayle E, Murray G. (2014) A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability. Child Care Health Dev. Jan;40(1):7-19 [abstract]

International Association for the Scientific Study of Intellectual Disabilities (2008) Parents labelled with intellectual disability: position of the IASSID SIRG on parents and parenting with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 21, 296–307.

Mayes, R., Llewellyn, G. & McConnell, D. (2006) Misconception: the experience of pregnancy for women with intellectual disabilities. Scandinavian Journal of Disability Research, 8, 120–131.

Parliament of Australia. Out of home care. http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Out_of_home_care (accessed on 22 April 2015).

Scottish Intercollegiate Guidelines Network (SIGN) (2008) Available at: http://www.sign.ac.uk/methodology/index.html (accessed on 21 April 2014).