The Development of Personal Relationship and Sexuality Guidelines for People with Learning Disabilities

Aims and Objectives

The aim of the research was to determine perceptions and views in terms of sexuality and personal relationships, in order to facilitate the development of a series of guidelines to be used in the future by Galway Association and other relevant organisations. More specifically, the research aimed to determine:

1. The opinions and views of those with learning disabilities.
2. The opinions and views of parents/siblings.
3. The opinions and views of staff working in facilities for people with learning disabilities.

Group Discussions with Working Party

A working party was set up by the Board of Galway Association to develop the guidelines. A series of group discussions with the working party was undertaken to establish in further detail the issues regarding personal relationships and sexuality that should be explored by the research. This aimed to ensure that all key issues of concern for the Working Party were included in the research. The Working Party also provided input to and facilitated all subsequent stages of the research.

Focus Groups with People with Learning Disabilities

The focus group is a method of group interview in which the group interaction is used to generate data. The method can be used to examine “not only what people think, but how and why they think that way” (Kitzinger, 1995). Focus groups can provide detailed information about the knowledge, attitudes and experiences of the participants. They are particularly useful in facilitating the discussion of sensitive subjects. The use of focus groups can also help empower the research participants; they become an active part of the research process as they get an opportunity to voice their opinions. They can also encourage participation from people who are reluctant to be interviewed or who feel they have little to say (Kitzinger, 1995).

Participants for each focus group were randomly selected based on comprehensive lists provided by the Galway Association. Each focus group contained participants with a range of different ability levels. In addition, it was thought that the focus groups would be more effective if there were separate focus groups for males and females and for different age categories. Table 1 gives a summary of those who attended the focus groups.

A ‘topic guide’ (a framework for the discussions and ideas for questions to generate conversation and discussion) was developed which consisted of open-ended questions and detailed ‘probe’ questions. It was intended that only the general questions were to be used as far as possible so that the participants could raise issues that were priorities for them. The detailed probe questions were for use if conversation dried up or to guide the discussion if important issues had not been mentioned. Based on the group discussions with the Working Party the following topics were then introduced for discussion:

1. The sexual and relationship experiences of people with learning disabilities.
2. The experiences of people with learning disabilities attending Galway Association facilities with regard to relationships and sexuality.
3. Aspirations in terms of personal relationships and sexuality.

Each focus group was audio recorded (with consent) and transcribed for analysis. A total of five focus groups were conducted. The results were then grouped into the key themes that emerged.

Survey of Staff Working in Facilities for People with Learning Disabilities

Each of the staff employed by Galway Association was sent a confidential questionnaire to ascertain their views/opinions in terms of personal relationships and sexuality of those with learning disabilities. The questionnaire was primarily structured in format, incorporating the issues elicited from the group discussions with the working party and the findings of the focus groups. A total of 381 questionnaires were sent and 155 were returned for analysis. This represents a 41% response rate. This sample size is sufficient to be representative of Galway Association staff.

Survey of Parents/Siblings of People with Learning Disabilities

All parents/carers of those using Galway Association services were sent a confidential questionnaire to ascertain their views/opinions in terms of personal relationships and sexuality of those with learning disabilities. As with the survey of staff the questionnaire was primarily structured in format, incorporating the issues elicited from the group discussions with the working party, and the findings of the focus groups. A total of 380 questionnaires were sent and 153 were returned for analysis. This represents a 40% response rate. This sample size is sufficient to be representative of parents/carers.

Personal Experiences

All participants had developed relationships with the same or opposite sex. Many indeed had a girlfriend or a boyfriend and most aspired to have a personal relationship. Some reported having very intimate relationships. There did appear to be an understanding of what a relationship was, with personal intimacy (e.g. having someone to talk to) emphasised as much as physical intimacy (e.g. kissing, holding hands etc).’ I think its good to have a companion’. ‘I love having girlfriends. They make me feel good, and talk to each other’. The majority did not see any reason why people like themselves should not be allowed a relationship. One person acknowledged that there was a perception that people with learning disabilities are not capable of having a relationship. ”We shouldn’t because you think we don’t realise what we’re doing.” These findings demonstrate that people with learning disabilities have sexual feelings and do not understand why these feelings cannot be expressed. They indicate that personal relationships with the same or opposite sex may develop at some stage for people with learning disabilities. It is therefore important to acknowledge this fact and develop ways to deal with personal relationships should they arise. This demonstrates the need to develop guidelines.

Parents/Carers and Personal Relationships

The issue of parents/carers emerged in four of the five focus groups. It was reported that parents/carers overall were reluctant to allow the person that they cared for to have a personal relationship. This was believed to be having a negative impact on the right of individuals to be happy.

There are things I’d like to do. I’d like to bring her home and maybe to be able to show her to dad but I cant. I think he’d go through the roof if he’d seen her anyway. I have to; it has to be that way like. But anyway I go in, I go in once a month to see her so then that’s not too bad, it’s better than nothing I suppose. No she wouldn’t approve. He wasn’t a lad to be trusted, something like that.

It appears that many parents may be somewhat overprotective in terms of the types of relationships permitted. Fairbairn et al (1995) points out that if the sexual needs of people with learning disabilities’ are ignored, it can lead to overtly sexual behaviour in public places and over affectionate and inappropriate behaviour towards strangers. They may also be more open to abuse due to their lack of sexual knowledge and experience. Parents/carers not allowing a person with learning difficulties to have a personal relationship may thus have the opposite intended affect. It is important for parents/carers to accept that people with learning disabilities are sexual beings. Evidently, Galway Association has a role to play in informing and educating parents/carers. This would also facilitate the acceptance by parents of Galway Association’s proposed guidelines on personal relationships/sexuality.

Relationships Within Galway Association

Galway Association facilities are a key place where personal relationships are developed. Many reported having girlfriends or boyfriends that attended the same facility. Some highlighted that other locations such as the home were very difficult to meet new people. “I don’t have anyone at home…only mum and dad.” Relationships are clearly being developed at Galway Association facilities, which again demonstrates the intimacy needs of people with learning disabilities. Meeting people, developing friendships and personal relationships were very important elements of attending Galway Association facilities. The proposed guidelines need to ensure that Galway Association is still able to provide opportunities for the development of personal relationships. If this function is eroded, many of those availing of Galway Association’s services may have limited opportunities to develop such relationships.

In terms of rules and regulations about personal relationships within Galway Association facilities, opinions differed considerably in terms of the type of behaviour allowed. Some reported they were allowed to have personal relationships whereas others commented that such relationships were not allowed. There was a considerable amount of discontent from those who believed their relationship was not allowed or was restricted. Rules were felt to be far too strict. People highlighted that they were adults and in particular should be entitled to privacy.

Over in the Association we can’t be on our own you see in case we might get up to something.

I don’t like people watching all the time too because then that makes you kind of mad and you lose your temper sometimes.

If we have to go for a walk and the staff have to come you see, and I don’t like that you see, them coming. I prefer if they just stayed in the factory and let us go and we could go ourselves, but they wont see.

It is clear that rules that do not permit personal relationships do not work as several people reported that they had relationships ‘behind staff’s backs’. Regulations should aim to promote openness about personal relationships. Only in this way can appropriate relationships be developed. The proposed guidelines therefore need to allow relationships to develop in a way that Galway Association does not unnecessarily intrude on an individual’s privacy, yet at the same time ensures relationships and behaviour are appropriate and that the individual is protected against abuse.

Sex and Related Issues

The focus groups highlighted considerable variation in the level of sex education. The focus groups for boys aged 13-17 displayed very poor levels of knowledge about sex and related issues. The topic of sex appeared to be a taboo issue that was inappropriate for them to discuss. Knowledge appeared to be very poor for the group in terms of basic sex education. For example, one boy knew that women got pregnant to have babies, but when asked if he knew how women got pregnant he stated: Yes, you eat too much.

Another example of poor levels of sexual knowledge was in terms of contraception. All did not understand how to stop women having babies. One participant when asked what condoms were stated: ‘They are cows.’ Whilst the numbers of participants in this focus group was small, nevertheless the results are of concern. It is interesting to note that whilst knowledge in terms of sexual education was poor, there appeared to be a good understanding of concepts such as what a relationship was and personal intimacy in a relationship. It could be argued that such concepts are more difficult to understand, indicating a lack of knowledge, as opposed to a lack of ability of the individuals in the 13-17 year old focus group.

The focus groups for those aged 18-30 years displayed better knowledge of sex and related issues than the boys aged 13-17 years. It was reported that sexual education had been received in the training centres. Information was also obtained from watching the television. However there remained considerable scope for improvement in terms of knowledge of safe sex, AIDS, and sexually transmitted diseases. Knowledge levels appeared to be extremely varied on these issues. One person for example thought you could prevent yourself from catching AIDS by taking the pill. Similar findings were found in the focus groups for those aged 31 and over. The main difference was that these individuals also referred to sex in the context of having a relationship, getting married and having children. Overall, it is clear that there is a need to improve the provision of sex education for those attending Galway Association facilities. Education provision should be designed for specific age groups and stage of development. This will help ensure individuals are able to understand the information the information provided (Fairbairn et al, 1995).

The Future

Most of the participants of the focus groups aspired to getting married and having children in the future.

Its nice to get married you know, you have a wife and you’d be able, love her and you’ll treat her. You know at a wedding ceremony the bride takes your hand, ‘dearly beloved’, and you become man and wife. In sickness and health, until death does us part. You’d have a better life and a better future.

The fact that people with learning disabilities currently are not allowed to marry was highlighted as a key area of concern, particularly for the focus groups of those aged 31 years and over.

Types of Relationships

Those attending Galway Association facilities have a variety of different ability levels. As such, a key issue is the type of relationship that should be allowed for different ability levels. Table 2 shows the type of relationships staff believed service users of different ability levels should be allowed to undertake. It can be seen that the majority of staff believe that service users of all ability levels should be allowed to have friendships and non-intimate boyfriends/girlfriends. In terms of having a boyfriend/girlfriend (intimate) or marriage, only a small proportion (5-25%) of staff believed those of moderate/severe ability levels should be allowed such a relationship with about half (48-55%) believing those with a mild ability level should be allowed such relationships.

The level of ability is clearly perceived as being an important factor on the level of intimacy. This demonstrates the need to recognise that some people may be incapable of making decisions about personal relationships. This therefore highlights the need for Galway Association’s proposed guidelines to take into account the different ability levels of those attending its facilities. Determining the ability level of service users in terms of personal relationships should include the opinions of staff, both direct care staff and professional clinical staff. The variations in the opinions of staff suggest that there is a need to provide a standardised objective approach, whilst recognising that each person must be assessed individually.

Parents should also have a role in making such decisions as the vast majority of staff believed that parents should be involved. In this way it is more likely that the guidelines will be accepted by parents/carers. Training in personal relationships and sexuality for both staff and parents will also facilitate objective assessment, helping to minimise the level of disagreement about the type of relationship that should be allowed for a particular individual.

Legal Issues/Guidelines

Only a minority of Galway Association staff (16%) were aware of the legal position in terms of the types of relationship permitted for service users. Some staff also highlighted legal issues surrounding relationships and sexuality, as something they were not confident about. These findings are not surprising, as the law is not clear, even to experts in this area. It would be very important for staff to know the legal position about such issues, to ensure all actions adhere to the law. This would help prevent staff being prosecuted for unwittingly permitting service users to partake in certain activities. Clearly guidelines need to take the legal situation into consideration. Indeed it is essential that the current legal position regarding such issues be included in the guidelines.

If guidelines are to be adopted by Galway Association staff, it would be very important that all staff receive the guidelines and that the guidelines are easy to understand and apply. This does not appear to be the case in terms of the existing guidelines. Only 30% of staff was aware that there were guidelines, with 40% of these individuals finding them difficult or very difficult to apply. Future guidelines must be made available to all staff, and every effort should be made to ensure that staff could apply them. Piloting the guidelines, to ensure they can be applied in practice can facilitate this. In addition, a staff-training programme in applying the guidelines should be introduced, incorporating refresher courses to ensure knowledge levels are maintained over time.

Types of Relationships

To successfully implement Galway Association’s proposed guidelines, it would be very important for parents to reach a consensus with Galway Association on the type of relationship that should be permitted for individuals of different ability levels. Parents were therefore asked as to the type of relationship the person they cared for was capable of having and that they would be happy for them to have (Table 3).

As with the survey of staff (Section 5) the majority of parents/carers believe the person they care for has the ability and they would be happy for them to have a non-intimate boyfriend/girlfriend or friendship. However, very few believe the person they care for is capable of an intimate relationship or marriage. This pattern is similar for all ability levels. This is in contrast to the survey of staff where a sizeable proportion believed intimate relationships/marriage should be allowed with the level of ability being an important factor in determining the level of intimacy permitted.

These findings also contrast with the findings of the focus groups, which displayed that people with learning disabilities do understand personal relationships and sexuality. This suggests that parents/carers need training to help them understand the sexual needs of the person they care for, to help them (along with staff; section 5) determine the ability level of the person they care for in terms of personal relationships/sexuality.

Education & Training

Fairbairn et al (1995) have suggested that sex education (for a range of reasons) is even more important for people with learning disabilities than their ordinary peers. Sex education will also help individuals understand why rules have to be put in place. Despite the importance of sex education, only approximately a quarter of the people they cared for had received sex education or education about personal relationships. This helps to explain why perceived knowledge levels of the person parents/carers care for, in terms of a range of topics about sexuality and personal relationships were rated as being bad or very bad by the majority of parents. It is not possible from the results to determine why education had not been provided for so many individuals. However, it can be argued that education levels of those attending Galway Association facilities should be improved. Otherwise it is unlikely that the proposed guidelines will be successfully implemented.

Education should be appropriate to age and stage of development. The results also suggest parents and Galway Association staff should agree the type and level of education for each individual attending Galway Association facilities. In terms of who should provide sex education, it is clear that the majority of parents want to have a significant contribution. Parents would require training to ensure the education given is appropriate. Parents/carers also believe schools, other organisations, and Galway Association should also have a role in providing sex education. A partnership approach may be appropriate here, to help minimise duplication of effort. Only 8% of parents/carers had received any education in terms of how to discuss personal relationships and sexuality with the person they cared for. This helps to explain an apparent lack of understanding of parents/carers in terms of the sexual needs and the type of relationship the person they care for is capable of having. This again highlights the need to provide training for parents. Indeed, over half of parents/carers stated they would be interested in receiving such education in the future.