Читать книгу Caring for People with Learning Disabilities - Chris Barber - Страница 12
Оглавление03
NURSING SUPPORT FOR THOSE WITH PROFOUND AND MULTIPLE LEARNING DISABILITIES
AIMS AND LEARNING OUTCOMES:
The aims of this chapter are:
To explore what profound and multiple learning disability (PMLD) is
To highlight the areas of care that a person who has a PMLD is likely to express, experience and need meeting.
By the end of this chapter, the reader will be able to:
Understand and discuss what PMLD is
Have a basic understanding of the ‘twelve activities of daily living’ model of care
Have a basic understanding of how these twelve activities of daily living could be applied when working with a person who has a PMLD.
INTRODUCTION
Chapter 2 highlighted a number of possible definitions and meanings of learning disability and suggested that the various meanings of learning disability are intimately bound up with the use of language and that as language changes, so does our understanding of those with a learning disability. It was suggested also that learning disability is a spectrum of conditions ranging from ‘borderline’ to ‘profound’.
This chapter will highlight the needs and care of Thomas, a 65-year-old gentleman with a profound and multiple learning disability (PMLD) who has recently had a heart attack. Although Thomas lives in a small care home, he was admitted to an intensive care ward and then transferred to a medical ward of his local general hospital. Whilst set against the backdrop of a busy medical ward, the contents of this chapter will have value for those working in other hospital-based clinical areas, community services and care and nursing homes, as those with a PMLD are also likely to access these services or clinical areas.
This chapter will provide a simple ‘definition’ of what PMLD is, briefly explain one model of holistic care and then explore how this model of care can be applied to those with a PMLD.
SCENARIO 3.1
Thomas is a 65-year-old gentleman who lives within a social care home and has a profound and multiple learning disability (PMLD) with additional needs in the following areas:
Severe mobility problems; is unable to sit without assistance and mobilise without the use of a wheelchair
Pre-verbal communication skills; needs assistance to communicate
Inability to digest food and drinks due to dysphagia; requires assistance to eat and drink
Arthritis
Epilepsy
Pain management
Taking and monitoring medication and their side-effects
Doubly incontinent
Personal hygiene; needs help with washing and bathing.
Thomas has suffered a heart attack and has been admitted to the ward on which Sally, the senior staff nurse introduced in Chapter 1, works.
WHAT IS PMLD?
What does profound and multiple learning disability (PMLD) mean? That is a fair question; after all, for some HCAs, student nurses and staff nurses, the whole idea of having a learning disability may be difficult to comprehend, let alone its various components or manifestations.
It is notoriously difficult to estimate with any precision the number of those with a PMLD in the UK. However, it is estimated that there are between 250 000 and 350 000 people in the UK who have a PMLD (Foundation for People with Learning Disabilities, 2005). Those with a PMLD, as well as having a profound learning disability (as indicated by an IQ of less than 40), are likely to have more than one disability which could include:
Neurological issues such as epilepsy
Physical disabilities such as cerebral palsy which will impact on the person’s mobility
Significant communication, eating and drinking problems
Respiratory and cardiovascular problems, sensory impairments, mental health issues, ‘classic autism’
Increased health problems that could be associated with any or all of the above.
Those with a PMLD are thus very likely to need significant additional support in order to maintain an optimum level of health and to engage within society.
TWELVE ACTIVITIES OF DAILY LIVING
In the past, as they are today, student nurses in all four pre-registration fields of practice were taught the vital importance of assessing the holistic needs of the patient or service user and then planning, implementing and evaluating a therapeutic and supportive care plan that met these assessed needs. This process of assessing, planning, implementing and evaluating care intervention was known as the ‘nursing process’. This nursing process utilised the work of three nursing theorists (Nancy Roper, Winifred Logan and Alison Tierney): this work being the ‘twelve activities of daily living’ (ADLs) (Roper, Logan and Tierney, 1980; 2000).
The twelve activities of daily living are:
Maintaining a safe environment
Communication
Breathing
Eating and drinking
Elimination
Washing and dressing
Controlling temperature
Mobilisation
Working and playing
Expressing sexuality
Sleeping
Death and dying.
These twelve activities of daily living often served as a useful structure for patient or service user assessment and resultant care planning, usually within a hospital setting. However, mental health, neurological issues such as epilepsy, emotional care and spiritual care appeared to be missing from this particular care model and any holistic health care assessment and resultant care and support package must take these elements into account. As Thomas is likely to experience and express a need for a high level of support in virtually all areas of his life, this model of assessment and support will be utilised.
The role of the nurse
Within this current context, the first role of the nurse, nursing student and HCA is to reassure Thomas, who is likely to be anxious if not downright scared. Do not forget that Thomas is likely to be in pain and confused as he is in an unfamiliar environment and among people that he does not know. All of these are likely to increase his anxiety levels.
Their second priority is to assess holistically Thomas’s needs with a ‘strengths and needs’ model, using the framework suggested by the twelve activities of daily living. Parts of this assessment may be relatively straightforward to complete and record, whilst other aspects may be less so. Do not forget to involve Thomas, any care staff from his care home and his family (if appropriate) in this assessment as much as possible, as not only will much useful information be gathered this way but it is also good practice. After all, if you (the reader) were a hospital patient, would you like your own care needs assessed and planned for without your involvement? Ideally, any care assessment and resultant care planning should be done on a multi-disciplinary basis, and this must include the views of the patient. Check and use any ‘hospital pass-book’ that may accompany Thomas, as this is likely to contain much useful information about Thomas’s likes, dislikes and needs as well as how his needs are usually met. Any resultant care plans must likewise be holistic and incorporate Thomas’s views, likes and dislikes.
Maintaining a safe environment
Thomas, along with everyone else, needs a safe environment in which to live. Maintaining a safe environment for Thomas is likely to include many of the following:
Does Thomas have a history of falls, epilepsy or ear infections that may affect his balance?
Does Thomas have any known allergies that could impact upon the care and support that he receives whilst in the hospital?
Does Thomas require any specific manual handling equipment and if so, is this equipment such as hoists and slings regularly serviced and maintained?
Does Thomas require mobility assistance, such as wheelchairs?
Does Thomas require assistance to maintain healthy skin and prevent the occurrence of skin tissue breakdown such as pressure sores and ulcers?
Does Thomas require any specific ‘feeding equipment’ such as percutaneous endoscopic gastrostomy (PEG) equipment in order to maintain optimum nutrition and if so, is this feeding equipment regularly cleaned, serviced and maintained?
Are nursing and other care staff adequately and appropriately trained to use any equipment that Thomas needs to maintain optimum health?
Is Thomas’s immediate environment free from unacceptable and inappropriate risks, such as clutter?
Communication
Thomas has very little verbal communication skill and is limited to grunts, groans, cries and the occasional scream. Thomas communicates through facial expression, body language, basic Makaton and the occasional ‘verbalisation’. Makaton is a sign language that was derived from British Sign Language and is used with and by people with a learning disability and, more recently, those with Alzheimer’s dementia. Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order (Makaton Charity, 2014).
Thomas has a variety of communication problems and needs (Griffiths and Doyle, 2009). These include making himself understood, understanding others, and having to rely on others to interpret what he is trying to say.
It is imperative that, at least initially, Sally take her cue from the care home staff that have accompanied Thomas. Once Sally gets to know Thomas, she should build upon her observations of Thomas and the way that he communicates with his care home staff and initiate conversations with him. Never forget, communication is a basic human right.
Breathing
As Thomas has had a heart attack, the quality and quantity of his respiration may be affected. This must be monitored and appropriate support offered. Thomas’s posture may also impact negatively upon his ability to breathe properly. Therefore, the input of a physiotherapist or occupational therapist may be required to ensure that Thomas is sitting or lying correctly and that his posture is not impeding his ability to breathe.
Eating and drinking
Thomas, like many other people with a PMLD, experiences dysphagia (difficulty in swallowing) and requires all of his food and drink to be the consistency of a ‘thickish’ paste. This involves having his meals puréed and his drinks thickened with a proprietary thickener such as ‘Thick & Easy’. It must never be forgotten, however, that the consumption of food and drink is not just a mechanical or bio-physical process as it involves the physical, emotional and psychological sensations of taste and touch, as well as incorporating socio-cultural and memory elements. Having a PMLD must not preclude Thomas from engaging in eating and drinking as social and cultural activities and experiences.
In order to maintain optimum nutritional levels and balance and for the optimum administration of medicines, the possibility of percutaneous endoscopic gastrostomy is being considered. For Thomas this is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient’s stomach through the abdominal wall and through which nutrition/food, drinks and medicines will be passed (PEG feeding).
Elimination
PAUSE FOR THOUGHT 3.1
“…Good morning Thomas. Oh, you’ve messed your bed again.”
I know, it’s not my fault and anyway I have had to lie in it for the last hour.
(paraphrased from Griffiths and Doyle, 2009, p. 285)
How do you think Thomas feels at being told that he has messed his bed again?
How do you think Thomas feels about not being checked, cleaned and changed before now?
Those with PMLD, like Thomas, are very likely to experience both urinary and fecal incontinence (Griffiths and Doyle, 2009). As a senior staff nurse, Sally is likely first of all to participate in the assessment of Thomas’s continence levels and abilities and the impact that such incontinence has on the quality of Thomas’s life.
Following this initial assessment, the resultant nursing care plan may include the following:
Monitoring of the side-effects of any medicines that Thomas may be taking. All medicines have side-effects and some of these may affect his levels of urinary and fecal continence;
Ensuring that any continence aids that Thomas normally uses at his care home continue to be used whilst on the hospital ward. This ensures continuity of care;
Ensuring that any continence aids such as pads are used appropriately and correctly, are fit for purpose, fit Thomas comfortably, do not leak, are changed regularly and are not visible underneath his clothing;
If appropriate and possible, encouraging Thomas to use ‘ordinary’ toilet facilities, bearing in mind that his mobility is decreased;
Ensuring that Thomas’s abilities and needs are reviewed regularly.
Washing and dressing
Thomas requires assistance with all aspects of personal hygiene, oral hygiene and dressing. This involves the choosing of cleaning and personal and oral hygiene products, the choosing and purchasing of clothing and choosing which items of clothing to wear on any given day. Thomas, being doubly incontinent, is likely to require extra assistance to maintain optimum personal hygiene. Such assistance must be offered gently, sensitively and with the utmost care and attention to detail, including privacy.
Controlling temperature
As Thomas is unable to tell you whether he is hot, cold or feels ‘just right’, let alone to control his own temperature, Sally will need to be aware of any subtle changes in his behaviour (whether, for example, he appears more agitated or aggressive or less engaged than usual), in facial expression and body language. Sally will also need to report and record these subtle changes as they form most of Thomas’s communication repertoire, and then act upon them.
Such actions may involve:
Offering to decrease or increase the amount of clothing that Thomas wears
Increasing or decreasing the amount of bed covering (blankets) that Thomas has
Increasing or decreasing the ‘ambient’ temperature through the use of small fans or portable heaters, if appropriate and safe.
The effects, if any, on Thomas’s behaviour and how he communicates need to be monitored, reported and recorded.
Mobilisation
Thomas has profound mobility problems and is unable to walk. However, he is able to weight bear for very short periods of time and to stretch out his arms; these abilities must be encouraged and may be useful in helping Thomas to get dressed and undressed. The advice and support of Thomas’s care home staff, the physiotherapist and the occupational therapist are likely to be essential to maximise Thomas’s mobility capacity. Although unable to walk, Thomas does own and use a purpose-built wheelchair and this wheelchair must be maintained and utilised whilst he is on Sally’s ward.
The physiotherapist would also be able to advise on a number of simple physical exercises that could prevent muscle and joint pain and keep his joints and limbs working and mobile.
Working and playing
It is unlikely that those with a PMLD are able to work in the same way and on the same basis that Sally is able to. It will be unrealistic for those with a PMLD to obtain and hold down a paid job in a shop, an office, a factory or on a hospital ward as an HCA or nurse. However, without being patronising or condescending, those with a PMLD are capable of engaging in a number of ‘work-related’ activities around the house and at any day care facilities that they may attend. Thomas, for example, enjoys assisting with the housework and the preparation of meals and cooking where he lives. This he does through holding the vacuum cleaner’s hose pipe and pushing it across the floor, holding a duster and wiping the table tops and mixing food (such as a cake mixture) in a bowl or helping to make sandwiches. Thomas may need assistance to understand why he cannot engage in these activities whilst on Sally’s hospital ward.
Thomas does enjoy going out shopping and for coffee, and accessing the countryside near where he lives. It may be appropriate for Thomas to be assisted to visit the hospital café or restaurant whilst he is in hospital.
Expressing sexuality
Of all the twelve ADLs, this is likely to be one of the two most contentious and difficult for nursing and other care staff to work with. Yet human sexuality is a crucial aspect of the human identity and what it means to be human. Thomas, despite having a PMLD, has the same sexual drives and needs as anyone else. However, expressing sexuality involves more than just the physical act of sex, as it also encompasses such diverse elements as clothing styles, use of cosmetics, hair styles, use of language, social and employment activities and even the music one listens to.
Sally’s role is to:
Understand how all these elements impact upon the person who is Thomas
Be aware of and understand how Thomas expresses his sexuality
Safeguard and promote his individual choices
Ensure that his right to privacy is recognised, safeguarded and promoted.
Sleeping
Thomas experiences occasional problems in sleeping at night due, in part, to his tendency to sleep during the day because of under-stimulation and boredom, and his need to be turned regularly at night in order to prevent tissue breakdown. A number of issues need to be addressed here:
Thomas’s sleep pattern needs to be monitored. This must involve an assessment of both quantity and quality of sleep as well as Thomas’s comfort (noise levels, whether he is too hot or cold and the suitability of the bed and mattress) and the actual timing of his sleep patterns
Thomas needs to be kept fully engaged in social activities during the day
Disruption to Thomas’s night-time sleep pattern must be kept to a minimum
Thomas’s medication may need to be reviewed as insomnia may feature as a side-effect of some pre-existing medication and the introduction of ‘night-time sedation’ may need to be considered (although this is likely to be a last resort measure).
Death and dying
As with sexuality, death and dying is one of the two most contentious ADLs. Whilst Thomas shares this ultimate destiny with all of humanity and, indeed, with all living things, this is not to say that Thomas will die or is likely to, whilst in Sally’s care. Nonetheless, the possibility of Thomas’s death must be acknowledged and accepted.
Sally’s roles are to reassure Thomas and explain to him what is happening in ways that he can understand and to liaise and work with other members of the hospital care team, including the hospital chaplaincy team if appropriate, Thomas’s family and Thomas’s care home staff, in relation to end of life care (whether these needs are perceived or actual).
CONCLUSION
As can be seen from the above, PMLD affects Thomas in virtually every aspect of his life. It is likely that, at some point in Sally’s career as a staff nurse or nurse manager she will come into contact and work with patients like Thomas, so the aim of this chapter is to provide a small number of suggestions as to how Sally can work with and meet the needs of those with a PMLD within a hospital setting. However, be warned: the use of the ‘twelve activities of daily living’ and other similar assessment and care planning models are not to be used as a sterile ‘tick box’ activity, nor to be written in stone. Those with a PMLD deserve and have a right to better than that. Such models are to be seen and used as guidance for appropriate care assessment and planning only.
KEY POINTS
| It is estimated that there are between 250 000 and 350 000 people in the UK who have a PMLD. | |
| PMLD can be defined as having an IQ level of below 40 and with a wide range of additional physical, neurological and sensory disabilities. | |
| One of the models of care that may be useful in meeting the holistic care needs of those with a PMLD is the twelve activities of daily living devised by Roper, Logan and Tierney. | |
| Caution must be exercised in not turning this care model into a ‘tick box’ method of caring. |
REFERENCES
Foundation for People with Learning Disabilities (2005) Available at: www.learningdisabilities.org.uk/page.cfm (last accessed 16 October 2014)
Griffiths, C. & Doyle, C. (2009) Nursing people with profound and multiple learning disabilities. In Jukes, M. (ed.) (2009) Learning Disability Nursing Practice. London, Quay Books.
Makaton Charity (2014) About Makaton. Available at: www.makaton.org/aboutMakaton/ (last accessed 16 October 2014)
Roper, N., Logan, W.W. & Tierney, A.J. (1980) The Elements of Nursing. Churchill Livingstone.
Roper, N., Logan, W.W. & Tierney, A.J. (2000) The Roper–Logan–Tierney Model of Nursing: based on activities of living. Edinburgh: Elsevier Health Sciences.
