Activities of Living Model Case Study

Anna is a 42 year old lady who has Rett syndrome and severe learning disability. Anna was born after a normal pregnancy. Anna has one brother and a sister who does not have learning disability or any specific health problems. Anna has been in the care for the last 11 years. Anna lived with her parents until 2001. Her mother used to be her primary carer.

Currently Anna lives in a 4 bedroom bungalow with two other ladies, who also have learning disabilities. Part of social life she goes to the day service three days a week. She seems to enjoy up there. Anna enjoys listening to the radio while she is resting in her room. She can give an good eye contact when talk to her.

To avoid a breach of confidentiality service user will be referred to as “Anna”, a pseudonym (NMC, 2008) Due to Anna’s severe learning disability and extremely limited communication skills she is unable to understand, retain or communicate an informed decision regarding consent to the contents of this assessment. In accordance with Mental Capacity Act (2005), following discussion with support staff, family and relevant health and social care professionals, this care plan is deemed to be in Anna’s best interests given the potential risks to her health and well-being.

Activities of Living

The activities of living listed in the Roper-Logan-Tierney Model of Nursing are:

1. Maintaining Safe Environment

Anna is dependent on staff to keep her safe. She exhibits bodily movements which interfere with normal safe eating and drinking. On occasions these erratic movements are so extreme as to put her at increased risk of physical injury. She can cause small wounds to her face, limbs and torso due to her repetitive stereotypical hand and arm movements. During the period of her erratic and uncontrolled movements put her at risk of aspiration and chocking. The uncontrolled movement can also cause lose some of her medication which is very essential for her physical wellbeing.

When she settle after a seizure she is more likely to sleepy. During this time excessive production of saliva can affect her breathing / blocking the airway.

Both Anna and staff are at risk of injury due to her flailing arms and legs. Also it is not safe to do the manual handling. When she displaying extreme body movements it not safe to transport her which can affect her attendance at day services.

Anna’s dysphasia can increase the risk of aspiration and may can cause chest infection.

2. Communicating

Anna has no formalised system of communication through which to make her need/wishes known and is totally reliant on others to anticipate her needs. Even though she has very good eye contact. She has no active say regarding any aspect of her life. She is open to speech and Language Therapy services but this mainly for dysphasia. Communication and sensory integration assessment have been done in the past with very limited success (2011-12)

3. Breathing

Anna has abnormal breathing patterns which is common in Rett syndrome. Anna will show signs of shortness of breath which is causing her distress and/ or pain. Shortness of breath can lead to cyanosis. This most likely to occur after a prolonged seizure or when she has chest infection. If her oxygen saturation levels are reading below the usual baseline ie 93% or less Her range is 94-97%) oxygen is administrated as per prescribed.

4. Eating and Drinking

Anna has no functional use of her hand and she is fully depending on others to assist with her eating and drinking. She does eat and drink well, it seems she enjoy her meal. She has been assessed by the Speech and Language Therapy to be at the risk of aspiration. Anna has liquidised food and thickened drink. Anna has dysphasia which can contribute to an increased risk of coughing , chocking, aspiration and recurring respiratory tract infections

5. Elimination

Anna is unable to take herself to the toilet and has no formalised system of communication to alert others of her need to go to the toilet. Anna is incontinent of both urine and faeces with an associated potential for skin breakdown. Anna is prone to constipation.

6. Personal Cleansing and Dressing

Anna is unable to do her personal hygiene independently due to her complex health needs. Due to her erratic movements she cannot be bathed conventionally. She has had recent urinary tract infection, which may have been the result of faecal contamination of the vaginal area. At present Anna has the bed bath everyday with Aqueous cream (soap substitute) to help with her dry skin. Diprobase moisturiser is available as PRN for dry skin to prevent the risk of skin breakdown.

Anna is unable to independently manage her oral hygiene needs and requires full support in this aspect of her care in order to maintain healthy teeth gums. Anna’s oral hygiene is maintained daily. Her positioning during and after oral hygiene procedures are important in order to minimise the risk of aspiration including silent aspiration.

7. Controlling Body Temperature

Anna’s normal temperature range for observations is 36-37.5*C. Anna can experience difficulty in maintaining an even body temperature and it is prone to becoming suddenly cold or hot. She prefers moderations in temperature. Staff need to be able to recognise when Anna is becoming too hot. Staff recognise breathing difficulties and cyanosis during prolonged seizures and use the prescribed oxygen via a face mask if necessary.

8. Mobilising

Anna is non-ambulant. She is unable to stand or support her own weight but she can hold head up when alert. She requires a back rest and bilateral support to be able to maintain an upright seated position. She has a full range of movement in all her limbs. Anna’s preferred positioning of her legs is to hold her knees tightly in flexion. Anna has apraxia and is unable to perform controlled motor movements.

9. Working and Playing

Anna attends day services for three full days a week. Attendance at day service is depending on her health and safety in transporting (i.e. when displaying extreme body movements it is not safe to transport her).

10. Expressing Sexuality

Anna’s physical / sexual body development is normal. Anna does not appear to show any interest of a sexual nature with the same or opposite sex.

11. Sleeping

Anna has several opportunities to rest in her day chair or in her bed. However, she is likely to drop off to sleep. She can take longer time go to sleep at night and normally has several interruptions in sleep throughout the night.

12. Dying

As Anna is stable at the movement her parents are not mentally ready to talk about her end of life. It will be done in the future when required.

Possible aetiology (cause):

Anna is a 41 year old lady who has Rett syndrome and severe epilepsy. Anna is totally dependent on others for all aspects of her care and has complex health needs that fluctuate and greatly impact on her day to day activities. These health issues are likely to affect the quality of her life.

The most possible cause of Anna’s self injury caused of her extreme erratic body movement can be because of severe epilepsy. She suffers tonic-clonic seizures. Occasionally, post-seizure. She will present with peripheral cyanosis and this most noticeable around her lips, earlobes, and mouth and figure tips.

Defining characteristics (signs & symptoms):

Epilepsy

Anna displays an unusually high tolerance to external pain. When Anna sustains a trauma type injury (bruising / abrasions / shear injuries) there is no discernible visible reaction. Staff working with Anna require the ability to make visual assessments of her injuries and have understanding of the implications if the visual symptoms of injuries. There is a risk that the severity of physical injuries may under assessed resulting in treatment mismanagement. It is believed that Anna does react to internal type pain such as menstrual pain, constipation or stomach pain.

Anna experiences seizures of varying length and intensity. She used to experience on average 10-15 seizures each month but this had increased to daily seizures. Seizures can occur at any time during the day and night, but there is evidence to suggest that she prone to epileptic activity when asleep. Therefore, she has an alarm monitor which is under trial, whereby noises which accompany seizures activated a pager which the nurse can carry.

She remains under the out-patient care of her consultant Neurologist (seen every 6-8 months). Video analysis is available to help diagnose exact seizure presentation and appropriate medical intervention.

The use of rescue medication has also increased. She requires rectally administered diazepam for the treatment of status epilepticus. Suction may be required to control oral excretions and administration of oxygen via face mask may be necessary in the event of cyanosis. Buccal Midazzolam has been trialled in the past and although effective in halting the seizure activity, Anna went into status within hours (2006) or her clinical signs dipped significantly (2012). This was found to not be the case with Rectal Diazepam.

Anna’s behaviour can be changed after a seizure activity. She will have very uncontrolled body movements mainly with hands and legs. The medication she have to control her seizure can make her depressed. Anna is on medication that required serum blood testing to ensure safe therapeutic levels and prevention of toxicity. This is believed to have occurred as recently as 2011 when Levetiracetam was believed to have caused her dangerous agitation (dose was 1500mg BD at that time).

The following factors are known to reduce Anna’s seizure threshold:

• Menstruation
• Overheating
• Over-excitement
• When she is not well
• Constipation

Anna has regular menstrual cycle. She can experiencedysmenorrhoea. She will have a loose bowl motions during her menstrual cycle.

Anna also exhibits other events that may be mistaken for seizure activity:

• Hyperekpexia
• Eye – rolling
• Rett syndrome characteristics (jerks, tics)

Due to Anna’s difficulty in eating and drinking ( mainly during her extreme erratic body movements) she was referred to the speech and Language Theraphist ( SALT ). Anna has been assessed by Speech and Language Therapy to reduce the risk of aspiration / silent aspiration when eating and drinking. According to the SALT Anna has been diagnosed with dysphasia (SALT report, 2011). She is at risk of aspiration of food and fluids, as these do not always clear from her oropharyngeal cavity during meals.

The SALT visited Anna at home and gathered all the information about her eating and drinking difficulties from the staff. Assessment has consisted of observation of mealtimes, discussed with staff and monitor at meal times by staff. Speech Language therapist made referral for videofluoroscopy assessment in 2012. After the videofluoroscopy SALT advised to give mouthful of drink in-between her meal. Coughing charts were implemented for both eating and drinking between initial assessment and review. The charts indicated that Anna was coughing when eating and drinking.

The recommendations made by Speech and Language Therapy was to avoid mixed textures i.e. soup and stews with bits or high risk of lumpy food. And replace these with a soft alternative, or liquidised soups. It can help her to prevent the risk of aspiration pneumonia. When Anna has liquidised food it is very important to make sure there are no lumps. For example, mashed potato is very likely to have lumps which may cause chocking.

Speech and Language therapy also recommended Anna must have a drink with any meal, and mouthfuls of drink must be given during the meal. It is helping her to clear her airway and to enjoy the meal. Anna should not to be fed when she is sleepy or drowsy as fatigue can result in an increased risk of aspiration.

If Anna showing extreme bodily movement when the meal or drink is to take place, the second carer is to place themselves at the side of her, and using their forearm, palm facing downwards. Use a blocking technique to lower Anna’s arms down to her lap and gently rest their palm and dingers together on her further chest long bone. While feeding Anna it is very essential the staff to sit on a chair and make sure she is able to give an eye contact. Anna must be seated in her day chair when having meal. Staff need to ensure that Anna is in an upright position. After the assessment done by SALT has also noted the aspiration can also because of the remaining food / drink in her mouth. To rid of that SALT recommended giving her an oral care after food fluid intake. By using a very soft toothbrush to clean the mouth can minimise risk or aspiration due to food fluid residue. And also it is important to maintain upright position for at least 30 minutes after having mouth care to reduce the possibility of reflux.

The recommendations from SALT is likely to help Anna to enjoy her meal. Her dysphasia techniques are continuing as it is recommended this will help to maintain the swallowing difficulty. Staff can contact the SALT if there is any new difficulty in eating and drinking and SALT will do the follow up / regular visits.