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When parents have learning difficulties

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VOL: 97, ISSUE: 17, PAGE NO: 40

Nicky Richardson, RMN, RNLD

Nicky Richardson, RMN, RNLD

The number of parents with learning difficulties seems to be rising (Sheerin, 1998). The reasons for this increase include the concept of normalisation and community care, the closure of institutions, changing attitudes towards sexuality and wider opportunities for independent living (Booth and Booth, 1994).

People with learning difficulties have also been encouraged to pursue valued roles in the community, which includes becoming a parent. This development has created a lot of discussion on the rights of people with learning difficulties, but individuals have been treated differently depending on the beliefs and values of those supporting them.

Dispelling the myths

Women with learning difficulties have the same right as any other women to have children, but there has been a historical reluctance to allow people with learning difficulties to procreate because of negative attitudes and beliefs.

First, there was a belief that their children would be disabled. Reed and Reed (1965) found that although the incidence was higher, not all children had disabilities. Woodhouse (1997) also suggests that genetic factors are not always the cause as environmental and parental skills also need to be considered.

This leads on to the second myth: that parents with learning difficulties are not competent enough to care for children. As Sheerin (1998) explains, much of the research leaning towards this conclusion is unsatisfactory as it does not define parental competency and is subjective in its methodology.

Eugenicists created a third myth centred on the belief that parents with learning difficulties will have larger families and create an unhealthy population. This is unfounded. Mattinson (1975) found that couples with learning difficulties tended to have fewer children than the general population, and as Craft (1994) explained they tend to have children later in life.

The fourth myth is that parents with learning difficulties will abuse or neglect their children. Abuse can occur, but this is often the result of a lack of support or training (Lynch and Bakley, 1989) or because the woman with learning difficulties has someone else in her life who abuses her child (Tymchuk and Andron, 1990).

A mixed approach to support

It seems that the level of support for women with learning difficulties who become pregnant depends on where they live and who provides it. Some areas, for example South Devon, have set up multidisciplinary working parties to establish a protocol for supporting parents with learning difficulties (South Devon Working Party, 1998). They recommend intervention and support as early as possible to reduce the chance of parents having their children placed on the 'at risk' register.

In other areas, however, there appears to be a negative view of parents with learning difficulties and no specialist support is available (Maternity Alliance, 1996). Professional attitudes may be negative and, as the Maternity Alliance says: 'For many women who do become pregnant it is regarded by professionals and family as a time of crisis rather than an occasion for celebration.'

In east Gloucestershire there has been a mixed response to parents with learning difficulties. How they have been treated depends on personal situations and how and when they came into the system. Some have become known to services only when the children have been placed on the 'at risk' register, while others have had full multidisciplinary support from the start.

A success story

In the case outlined here, the couple was referred to the learning disabilities team before they were married. The community learning difficulties nurse became involved to offer advice on contraception. The woman had requested advice as she was planning to marry and eventually have children. This was an ideal situation as it meant that, from the start, the couple could have planned intervention and support from various professionals, depending on their need.

When making an initial assessment in the case of someone with learning difficulties who wants to have a child, it is worth assessing the parents' ability to provide adequate child care as well as their ability to learn. Tymchuk and Andron (1987) describe various factors that could affect the ability of parents and recommend that an assessment of these factors influence the plan for future support and intervention (Box 1).

When identifying needs and planning any type of intervention, it is important that this is user-led and that the couple are involved in any decision-making. In this case the couple were asked to help plan their needs, based on the assessment, and to identify any support they might require in the future. Table 1 outlines their goals and the professional who will help them to achieve each one.

When looking at the needs of the couple with learning difficulties, as set out in Table 1, the use of client-held records became relevant as various professionals were involved. These client-held records became even more useful when the woman eventually became pregnant as she chose to put her records in the same file as her maternity notes. This meant the generic teams also wrote in them and everyone knew who was involved, their roles and the mother's progress.

Environmental factors

Looking at some of the goals in detail, the first was to move the couple to more appropriate accommodation. This was seen as a priority as they lived in a small one-bedroom flat in a deprived area. They needed help to find a two-bedroom home, closer to the man's job and near their parents and other local resources.

As Booth and Booth (1994) explain, when parents are under environmental pressures it is sometimes difficult to distinguish between those pressures and their learning disability if they start to show signs of not coping. They also say that inadequate child care can often be a product of poverty, inadequate housing, a lack of local support and the absence of an extended family and is not necessarily the result of a learning disability.

More suitable accommodation was found for the couple, who then decided to marry. The woman decided to stop using contraception and soon became pregnant. At this stage it was essential that the couple were given every opportunity to be successful parents and our support was imperative.

Planning for professional support

After a review meeting, a coordinator was identified and roles were defined for each professional. Even at this early stage, the primary care team attended the meeting with a social worker and members from the community learning difficulties team. Budgeting and home management skills were identified, including food hygiene, safety and housework. The couple also needed to be taught about pregnancy.

Many of these skills can be taught through training (Booth, 1993), but when teaching new skills the client's learning difficulties need to be considered. The way in which information is communicated is vital.

In the case of this couple, the mother could read but the father could not, so the community nurse and speech therapist designed a calendar for antenatal appointments using symbols as well as words. Next to the date of an appointment a symbol showed who it was with and what it was for. For example, the symbol for a nurse with a picture of a baby identified the midwife. This helped the couple to feel empowered as they knew when they needed to arrange appointments and who they would be seeing. The calendar also showed when the baby was due.

When teaching any new skills, consideration must be given as to whether it is better to do it in a group or on a one-to-one basis. In this case, the couple attended antenatal classes with all the other expectant parents but also had individual help.

There are also plans to develop a parents' group for mothers with learning difficulties which would be run by the multidisciplinary team from the Cheltenham community learning disabilities team and social services, including the family centre. This will provide ongoing professional and peer support and allow parents to be continually reminded of the skills they have learnt.

The fact that this couple received early support and intervention and continue to have ongoing help has proved useful. The child is now developing well and the child-care team at social services feel there is no need for the child to be on the 'at risk' register.

As the child grows older there will be challenges ahead, but with the right help and collaboration between the professionals and parents, the future looks positive.

As a final note, the mother has given permission to include this extract from her diary:

'When she was born, he was in the room with me and he was crying. I did not feed her but on Monday morning at 6am I fed her on my own with some help from a nurse who I like very much. She was 6lb 7oz and now she is 11lb 4oz and 13 weeks old. I am very happy.'

- This article was written while Nicky Richardson, RMN, RNLD, was a community nurse, learning disabilities, at Delancey Hospital, Cheltenham

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