How to avoid asking the question 'how are your feeling?' In order to care effectively for a patient with intellectual disabilities, a nurse needs to learn the language of "social interpretation" and to seek information through very specific questions.

Hundreds of people who are different, including those with intellectual disabilties, present for care and attention within our health services every day. Nurses, at some time in their career, will probably encounter people who took, act or respond differently from what they regard as "normal". Many are poorly equipped to cope. (1)

This article has emerged from my tong experience working at Kimberley Centre in Levin and seeing how people with intellectual disabilities are treated within mainstream health services. People with intellectual disabilities have the same rights to these services as anyone else, but there are often problems in meeting their needs for essential services.

Apart from the obvious challenges of language, ethnicity and culture where the services of an interpreter may be required, a nurse may at some stage need additional help with social interpretation, especially when caring for a patient with an intellectual disability.

Over the years, I have come to define social interpretation as the gathering of indicative information from and about the individual. It happens when individual wellbeing is assessed for health care purposes using unconventional methodology to support standard observations. Social interpretation gives actions, reactions and interactions significance when an individual may not be able to recognise, use or understand everyday health and medical terminologies.

"How are you feeling?" is one of a health professional's most frequently asked questions. If someone answers "I'm OK" and fails to reveal what is truly going on in their lives, chances are treatments and interventions may not be delivered as effectively as they might. It is critical health professionals are in tune with the issues and concerns that lie beneath the surface for many patients and never simply depend on the first answer a patient may give them. The skilled clinician has a variety of tools and strategies to look beyond a person's initial response or presentation. It is vitally important nurses hear and understand what is truly going on. They should never make assumptions or depend on first interactions, particularly when caring for patients with an intellectual disability.

A person with an intellectual disability may look and act much as any other person presenting for treatment at a hospital or general practice. Their disability might be rooted in education or the lack of it and not become dear until they are approached or questioned. Depending on their background and perception, many patients may not answer the "How are you feeling" question in the way we might expect. (2)

Nurses' first responsibility is to ensure patients receive the best possible care and attention in a timely, safe and dignified manner. Caring for the whole person requires us to understand not only who an individual is and where they come from, but how they function from the inside out. On[y in this way can the real essence of people with intellectual disabilities be understood.

A person who has difficulties internalising (hearing) a simple question such as "How are you feeling?" may respond in a misleading way. Many will be able to give an answer but others will not. People with an intellectual disability can definitely speak for themselves, given appropriate support, time and encouragement, but, in order for that to happen, it is important to know and use language that is appropriate to the individual. If the person is presenting with abdominal pain, the question "How are you feeling?" may not be readily understood. A nurse needs to rephrase the question and seek information specifically related to the problem under treatment, eg "Is your tummy sore?"

If a nurse wants to find out if a patient is uncomfortable, s/he should took for signs such as restlessness or anxiety and then relate that knowledge by asking a very specific question like "Are the blankets hurting you?" A person with an intellectual disability often has problems with abstract explanations, so things need to be related to the here and now. (3) Many intellectually disabled people will tell you what they think you want to hear in order to be your friend or help you do your job!

Reliability is increased when an individual with an intellectual disability is able to relate personally to an experience in the short term. It is best to ask an intellectually disabled person before breakfast how they slept the previous night rather than waiting till later that morning. Any time delay will result in less reliable information. Be specific and focused in the question and have some definite point of reference or contact. The statement "The nurse says you did not sleep well" is not nearly as useful as a conversation like: "Jane said you used the toilet a lot last night. That's good. Did you get back to sleep OK?" The question takes longer to get to, but elicits the required information white promoting the essential feeling of oneness which many intellectually disabled people seem to value.

When meeting and greeting a person with an intellectual disability, remember they are people first, with some thought processes, feelings and life experiences. People with an intellectual disability are not necessarily unintelligent and many live relatively independently in the community. Others require supervision, support and encouragement with the things they can achieve. Health professionals are often intimidated and uncomfortable not knowing how to approach and communicate with this section of our population. (2) Remember, too, that going to a health clinic or hospital can be stressful for people with an intellectual disability. There is the fear of not being able to explain what's wrong and not understanding what's happening. (4)

Social interpretation begins with the basics of meeting, greeting and welcoming people who have disabilities. It's not about sophisticated schemes or complex language but rather basic acceptance and common sense. Finding out how an intellectually disabled person is feeling takes time, interaction and observation. Treating others as you would like to be treated is a useful guideline. (4)

Many people with an intellectual disability presenting for treatment come from supported living situations. The information passed on by support staff should include an outline of recent history highlighting the issues of concern. Using social interpretation skills should enable a nurse to question the patient's likes, dislikes or preferences.

There is a real need to make allowances which optimise care and attention, but people with an intellectual disability should not be made the centre of everyone's attention. Reassuring a patient that he or she is both welcome and will be given good service will have a positive influence. (4)

Overcoming communication problems

Recently I accompanied a family member with an intellectual disability to hospital. I noticed how some of the nursing staff did not know how to greet and communicate with him. These nurses were obviously skilled and knowledgeable, and were doing their best to provide care to a wide variety of people in a busy medical ward. They did not need what they perceived as the added stress of caring for a person with an intellectual disability from whom they could get little information or assistance. Once the staff were made aware of this patient's personal preferences in relation to name, approach and ability, they became more comfortable about providing care. Intellectually disabled people are quick to pick up on any tension or negative emotions. Being near distressed people in an accident and emergency centre, for example, can be difficult for them. They are very sensitive people and will respond from the heart to any emotional stimuli.

On another occasion, I accompanied a patient from Kimberley Centre to Palmerston North Hospital where he was to have surgery. When the nurses read the label "pychopaedic" on his admission form, they panicked, believing the patient must be mad. It took them a little while to realise that his difficulties were cognitive, and that he was in fact a very gentle and caring person.

Palmerston North Hospital has now introduced a system where a patient from Kimberley or other supported living arrangements is assigned a care assistant who will stay with them at all times. This ensures the patient feels comfortable with what is happening to them. A nurse needs to build a working relationship with people with intellectual disabilities. This may require a nurse to introduce herself repeatedly, rather than just once.

I believe nurses can make a difference to people with intellectual disabilities who present to hospitals and primary health settings for treatment. What is required is to learn to interpret the patients' needs in terms of the settings they come from, prior events in their lives and personal preferences already understood. If we do this, we will know how the patient is feeling without asking that question "How are you feeling?"

References

(1) Lindsey, M. Russell, O. (1999) Once a day, one or more people with learning disabilities are likely to be in contact with your primary healthcare team. How can you help them? London: NHS Executive.

(2) Lennox, N. G., Diggens, 3. Ugoni, A. (2000) Primary health care for people with an intellectual disability: general practitioners' attitudes, and provision of care. Journal of Intellectual and Developmental Disability; 25:2,127-133.

(3) Dobson, S., Dodswoth, S., Miller, M. (2000) Problem solving in small multidisciplinary teams: a means of improving the quality of the communication environment for people with profound learning disability. British Journal of Learning Disabilities; 28: 1, 25.

(4) Hollins, S. et al (1996) Going to the doctor. Books beyond words. London: Royal College of Psychiatrists, University of London.

MAXIMISING THE 'LOVE FACTOR' IN THE LIVES OF PEOPLE WITH INTELLECTUAL DISABILITIES

Allen little, QSM, JP, EN, is a member of the day support service team (education) at MidCentral District Health Board's (DHB) Kimberley Centre in Levin. He completed his community nurse training at Wanganui Base Hospital in 1977, becoming the first legally blind person to train and complete this course in New Zealand. He has worked at Kimberley for the past 21 years. This year he decided not to renew his annual practising certificate due to his worsening eyesight.

In his current position, he is responsible for the planning, design, implementation, supervision and evaluation of tutorials or instruction for disabled adults who are being prepared for deinstitutionalisation. He is the resource person for residents with sight disabilities and provides tutorials to MidCentral DHB staff on vision impairment.

He describes working with Kimberley residents as "one of the most satisfying experiences of my life and an absolute joy. My driving passion is to improve the quality of life for people with intellectual disabilities. As they prepare to leave this institution and start new, independent but well supported lives in the community, there are many life skills to learn, from simple things like walking with their heads lifted rather than bent forward, to understanding where food comes from and how it is made.

"My professional career is all about maximising the 'love factor' in people's lives, ie reassuring people, even those most regard as being on the bottom of the social pile, that they are valued members of society."

Little has been committed to the process of de-institutionalisation for years and is pleased with the progress being made to settle Kimberley residents into new community-based residential facilities. "There are now just over 200 people to be moved, with a deadline of next June 30. I have never believed it is right for anyone to be cloistered away from the rest of society. Everyone has the right to flourish."