Peer-informed training programme for parents with a learning disability

Deborah Kitson, Chief Executive Officer, and Joanna Leaviss, Project Co-ordinator from the Ann Craft Trust (ACT), UK, describe a project to develop a learning disability training programme for professionals who support parents in pregnancy and early parenthood. The Inclusive Support project, funded by the Department of Health, was carried out by Mencap in partnership with ACT and NCT (National Childbirth Trust).

The training programme has now been incorporated into ACT's training services. The materials are copyrighted to Mencap and ACT. For further information, contact ACT on 0115 9515400 or ann-craft-trust@nottingham.ac.uk

The Inclusive Support project aimed to develop a programme to train professionals involved in pregnancy or early parenthood care to be more effective in supporting people with a learning disability. The project developed from previous training in learning disabilities offered to volunteers (Ann Craft Trust and Home-Start 2004) and established parent support providers (Mencap and Ann Craft Trust 2005). The main aim was to enable these professionals to provide accessible, inclusive and appropriate care, support and information during pregnancy and through the early days of parenting to parents with a learning disability.

Training was delivered free of charge in four pilot regions – Walsall, Derbyshire, Leicestershire and Nottinghamshire. A review was conducted to identify existing resources and services. The training was informed by steering group meetings with parents with a learning disability, to explore their experiences of antenatal and postnatal care, and their perceptions of a selection of information books, leaflets and DVDs relating to antenatal or postnatal care, breastfeeding and baby care. A survey of midwives was also conducted in three of the project regions, to explore their current knowledge of the health and communication needs of people with learning disabilities, their training needs, their current level of access to specialist services and resources, and their perceptions of the accessibility of their service to parents with a learning disability.

Parent steering groups

Parents contributed enthusiastically to the steering group meetings. Issues raised included antenatal classes, accessible information and feeding choices.

Many of the parents had not attended antenatal classes on offer. Alongside offering important information, these classes provide a setting in which to develop meaningful friendships. Strong social support systems are important during the postnatal period. For a vulnerable population such as parents with a learning disability, these friendships may help to reduce the stressful effects of social isolation and the subsequent impact on parenting, adult relationships, and both physical and mental health. Research is needed into methods that encourage attendance of parents with a learning disability at such classes.

Parents consistently preferred the easy-read accessible information, and found many of the other leaflets difficult to understand. Previous research in other areas of healthcare has shown that health information is often not available in a form that is appropriate for people with a learning disability (O’Regan and Drummond 2008). Parents in the steering group also reported that they preferred to have support when presented with a booklet. This requires a commitment of extra time on behalf of the care provider. McConnell et al (2003) argue that antenatal practitioners need more funding to give extra time to support parents with a learning disability.

The majority of parents in the group formula-fed their children. However, feeding decisions could be attributed to socio-economic factors and living conditions rather than intellectual disability. Parents displayed a good knowledge of the issues surrounding breast and formula feeding, including costs and benefits. They reported that they wished they had tried breastfeeding and that they had rarely seen women breastfeeding. It is therefore possible that these parents’ feeding decisions were based on social and cultural factors rather than lack of knowledge. Mothers from poor socio-economic groups have lower rates of breastfeeding than the population as a whole (James et al 1997). As many parents with a learning disability live in socially disadvantaged conditions (Booth and Booth 1993, Feldman 1998), it may be that living circumstances more than intellectual capabilities are guiding feeding decisions. More research into the reasons behind feeding choice in mothers with a learning disability may help to shed light on these issues.

Developing and delivering the training

Responses from the survey of midwives informed the development of the training. Issues included a perceived lack of knowledge about the communication and health needs of people with learning disabilities; confidence issues in identifying whether a parent has a learning disability; and a lack of awareness of accessible resources and support systems for use with parents with learning disability.

A one-day training course was developed to include small group work, a quiz, case studies and trainer input, delivered by an Ann Craft Trust trainer with a background in learning disability nursing and social work. A total of 20 sessions were attended by 135 professionals. Most were midwives but participants also included health visitors, allied health professionals, doulas, NCT trainers and social workers.

Evaluation

The training sessions were evaluated positively with regard to their relevance to practice and meeting the course aims and participants’ learning needs. Several key issues also emerged through structured discussion with participants, which reflected internal systems, external services, legal issues and personal skills.

Participants identified a need for more widespread training; training to form part of the undergraduate curriculum; coordinated resources; increased coordination and communication between relevant organisations (health services and external services, for example Mencap, NCT); creation of link workers to act as a central point of contact within the service; creation of a central electronic database of resources, services and useful information; and provision of inclusive antenatal and parenting classes for parents with a learning disability.

A further issue raised was the lack of accessible resources which met clinical standards, including ‘baby friendly’ standards, i.e. that formula feeding is not idealised. Many of the resources written for parents with a learning disability contain pictures of babies being bottle fed. Use of these resources in hospitals would jeopardise their baby friendly status. In addition, information in some of the accessible resources was found to be out of date. Consultation between the producers of accessible information and clinical staff with knowledge of current guidelines may result in resources that are both accurate, informative and accessible.

Evidence from the literature suggests that people with learning disabilities can develop effective parenting skills when given the right support. Professionals who provide care during pregnancy and early parenthood are in a vital position to offer this support. Participants who attended the training reported gains in knowledge and confidence in the support of parents with a learning disability. They also took back practical tools and ideas to enable the development of their working practice. More widespread training, and better coordination of and dialogue between services, would result in more inclusive support for parents with a learning disability and their children.

First published DPPI Journal, Issue 73: Summer 2011

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