SEXUALITY AND RELATIONSHIPS—THE NEED TO KNOW

The Eastern Health and Social Services Board (NI) and the four community trusts in its area have organised a series of information-sharing meetings about new initiatives with service users, support workers and carers (see Frontline 37, 22). Roy McConkey, University of Ulster and EHSSB, reports on the presentations and discussions at a workshop held last spring on the topic of sexuality and relationships.

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There are three main reasons why services and their staffs cannot ignore the issue of sexuality. Ordinary lives: Our aim is for people with learning disabilities to live ordinary lives. We promote this in housing, employment, education and so on. We cannot then draw a line and say that these people cannot have ordinary relationships and sexual experiences! Relationships add to the quality of life: We know that everyone’s quality of life is greatly enhanced if they have a network of supportive relationships. They may be made up of people called ‘acquaintances’; others may be ‘close friends’ and some are intimate friends; people whom we are close to both emotionally and physically. To deny people opportunities for friendships will impair their quality of life. Protection from abuse: No person, no matter how severe their disability, is immune from abuse. However, many are unable to protect themselves unless they are given information and skills to assert themselves.

Four groups of people must be involved:

  • Persons with a learning disability. Ways must be found to share information in a meaningful way and to build their confidence in asking questions; seeking help and protecting themselves.
  • Frontline staff. The staff who have most contact with service-users are those most likely to be asked for advice or information. These staff members need to feel comfortable in this role and they may want and require some guidance.
  • Family carers. If service-users continue to live with families, we need to consult and inform their carers. Many have difficulty in broaching this issue with their relative and are appreciative of help.
  • Certain professional workers, such as doctors, social workers and psychologists, can assist individual service-users and provide support to frontline staff and family carers.
STAFF SURVEY

Roy McConkey and Deirdre Ryan (a student from University of Ulster) conducted a survey with 150 staff in one Community HSS Area—working in voluntary and private services and education, as well as in Community HSS Trusts. Just over half worked in residential services; the others in day services. Nearly half had worked for ten years in services and most were female. Staff were asked whether they had encountered one of seven scenarios outlined in the Table below; to rate their confidence in dealing with each and whether or not they had sought help from others. Two-thirds of staff had dealt with at least one of the scenarios; their confidence varied and they were most likely to seek help in what could be considered potentially abusive situations. (NB: 35% of participating staff had not had to deal with any of the scenarios below.)

The percentage of respondents reported to have dealt with each scenario (N=150)

Scenario% who have experienced% Dealt confidently% Enlisted help
Public masturbation by male client33%58% (N=49)35%
Female client reports unwanted sexual advances25%70% (N=37)70%
Same sex kissing at a disco25%68% (N=38)37%
Question asked about contraception24%68% (N=36)42%
Sexual touching in public toilet17%53% (N=25)73%
Break-up of a relationship13%42% (N=20)68%
Question asked about sexual intercourse7%50% (N=10)80%

Only a minority of staff had received any training in sexuality. The group most likely to have had training were service managers and staff working in the voluntary sector; those least likely to be trained were direct- care staff working in Community Trust services.

Past Training in Sexuality

 % trained
Managerial45%
Professionals30%
Direct care staff11%
Voluntary sector 36%
Education23%
Private sector20%
Community HSS Staff13%

Staff were invited to select from a list of topics, the one thing which would most help them to deal with issues of sexuality. Frontline staff were particularly keen to have training, whereas service managers were more likely to request clear policy guidelines.

Staff Training Needs

 % First choice
More training46%
Clear policy guidelines42%
Opportunities to discuss with colleagues 23%
Support from management19%
Appropriate educational materials16%
Support of families14%

Conclusions: Staff have had few opportunities for training in sexuality, but they would welcome this. In their work they are dealing with a range of scenarios, some of which are potentially abusive.

(Contact: Roy McConkey, School of Health Science, University of Ulster, Newtownabbey, Co. Antrim BT37 0QB)

PERSONAL RELATIONSHIPS AND SEX EDUCATION AT MUCKAMORE ABBEY HOSPITAL

Helen Burke and Jane Robinson described the work undertaken by a group of staff at Muckamore Abbey, Co. Antrim, where a Personal Relationships Advisory Group was set up in 1993 to examine the needs of patients and staff. Their priorities were to develop policy and guidelines on relationships and adult protection and to develop staff training and development programmes.

  • An awareness-training package was developed: Personal relationships: a right or a privilege? 450 hospital staff from all disciplines and grades have since attended half-day training sessions.
  • A training package was designed (in conjunction with the Family Planning Association) to address the needs of staff working in the areas of patient sex education and counselling. The package included a five-day course, a two-day further course on counselling and a further two-day course on oral presentations.

The Advisory Group produced draft guidelines (as yet not adopted by the Hospital) to cover staff roles, people’s rights, guidelines on sex education, sexual health, contraception, sterilisation, sexual activity, sexual preference, marriage, cohabiting and parenthood.

Patients in the Hospital are referred to the Advisory Group for participation in the sex education program. An assessment of the patient’s existing sexual knowledge and understanding is first carried out, in confidential individual interviews, using a specially-devised interview schedule and line drawings. The assessment covers knowledge of body parts, life changes, touching, masturbation, sexual intercourse, pregnancy, birth, contraception, sexual diseases, sexual assault and pornography. Three sex education programmes have been run to date [ie. March 1999], each with five participants and two female leaders. The topics covered in the 8-10 sessions with each group included personal relationships, boundaries, male and female development, legal and moral issues, pregnancy and contraception, and emotional aspects. Confidentiality was stressed and trust exercises were included in the first session. Pictures were used from Pavilion Publishing’s training packages (Sex and the Three R’s). All participants were attentive and courteous and demonstrated common sense and caring attitudes. A follow-up session four months later suggested that the information had been well retained.

(Information from: Helen Burke, Greenan Villa, Muckamore Abbey Hospital, Muckamore, Co. Antrim BT41 4SH)

GROUP WORK: WHAT WE WANT/NEED TO KNOW AND HOW IT SHOULD BE DONE

Workshop participants were divided into groups to discuss what they wanted or needed to know. Ideas were also sought on how this should be done. (The responses below came from both staff and service-users and are not listed in order of importance.)

Information Needed:

  • Family planning, contraception and morning-after pill.
  • Where to go to get help – telephone numbers; leaflets, local people
  • What help is available to people who have been abused?
  • Aids – how it is caught and how is it prevented?
  • Sexually transmitted diseases (STDs) and protection from them
  • Law and legislation
  • What are our rights regarding marriage and sexual relationships?
  • Awareness of dangerous places
  • Awareness of social facilities where you can safely meet people
  • Responsibilities of a relationship
  • How do we know if what we know about sex if true or false?
  • Can you tell if babies have impairments before they are born?
  • Can people with a mental illness have babies
  • Do the people who abuse others get help?

Skills needed

  • Know more about opposite sex and how to handle them
  • How to say no – especially when in a relationship
  • How to avoid being taken advantage of
  • How to give good and informed advice to others
  • How to keep safe if going out with girlfriend/boyfriend.

Support needed

  • More staff support in order to build relationships.
  • More time for staff to talk privately to service-users.
  • Help for parents, family, friends to understand and support victims of abuse
  • Marriage counselling
  • Sex counselling
  • Specialised staff training—abuse; long-term relationships; marriage.

Training for service-users

  • Groups in day centres
  • Separate groups for men and women.
  • Training with girlfriends/boyfriends together
  • A group for people who have been abused
  • Assertiveness training for service-users
  • Leaflets on sexual health, contraception, etc. available in centres.
  • Support from other voluntary organisations such as Relate, Nexus etc.
  • Opportunity to talk to community nurses, doctors etc.
  • More workshops
  • Peer-tutor training

Sexuality is an issue that staff and service-users no longer wish to ignore. The workshop clearly identified how this could be done and the content which is needed. Perhaps more heads will start coming out of the sand—the issue is not going to go away!

Roy began his career in intellectual disability in 1970 at Manchester University. He moved to St Michael’s House Dublin in 1977 and then on to work with the Brothers of Charity in Scotland in 1988, before returning to Northern Ireland in 1997. In recent years he has maintained close contact with Irish services through his Visiting Professorship at Trinity College and his involvement with the Health Research Board, Genio Trust and the National Federation of Voluntary Bodies. A list of his publications is available at:  www.researchgate.net/profile/Roy_Mcconkey.

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