The Gibson family are Darren, Anne and Jacob (6 years old). Darren and Anne adopted Jacob when he was 2 years old. The Gibson’s live in a 3 bedroom house. All 3 bedrooms are located upstairs. The house is fitted with a lift (by the local authority) which moves between the ground floor sitting room and Darren and Anne’s bedroom on the first floor. The lift was used to transfer Jacob up- and downstairs in his wheelchair. The family received some care help for Jacob through social/health services. They had one carer who came to the house 2 evenings a week to get Jacob ready for, and settled in, bed. Jacob also spent 2 nights a month at a NHS respite unit. Together the family also spent time at two different hospices and were allocated 10 nights a year at one hospice and 14 nights at the other. At the hospices Jacob stayed in his own
149 bedroom and was cared for at night by hospice staff allowing Darren and Anne uninterrupted nights.
Jacob Gibson
Jacob was 6 years old and the youngest participant in my study. He has severe spastic bilateral CP (affecting his whole body) and is at GMFCS level V. Jacob finds it very difficult to control his body, posture and movements and needs to be well supported in his wheelchair. Jacob is non-ambulant and at the time of the study Jacob was using a manual wheelchair but the family were hoping to acquire for him a powered wheelchair that he could learn to self drive. Jacob is non-verbal and communicates using a combination of sounds, facial expressions and head and eye movements. He has an established ‘yes’
response whereby he lifts his head up and raises his eyes whilst making a
‘hmmmm’ noise. Jacob’s ‘no’ response is denoted by him lowering his head and eye gaze and he makes a low pitched sound. At school and at home Jacob was beginning to learn how to use a symbol communication book (as used by Libby Cooper and described above). It was still a new concept for Jacob so Anne felt it was better not to use it for his interview.
Jacob has complex health needs and was on a number of different medications. Jacob has severe and complex epilepsy resulting in serious and sometimes prolonged seizures. Everyday Jacob would experience many absence type seizures and he also had longer lasting ‘tonic clonic’ seizures.
The tonic clonic seizures would often occur in clusters so Jacob would experience a number of them within a period of a few days and then not have one for one to two weeks. Jacob was taking two medications to try and control his epilepsy. Jacob also took other medications to help control muscle spasms, lessen saliva production, and to reduce the build up of stomach acid. Jacob also took 9mg of melatonin every evening before bedtime to help him go to sleep.
Jacob has a gastrostomy fitted and was primarily fed via the tube, although very occasionally he would have ‘tastes’ (very small amount) of soft or puréed food in his mouth. Jacob also had a degree of hip dislocation (common in children with severe CP) and Anne reported in Jacob’s Chailey sleep
150 questionnaire that his hips could be a source of pain for Jacob, especially at night. Jacob attended a special needs school on a full-time basis.
Darren and Anne Gibson
Darren had a full-time job and worked night shifts. Anne was a full time ‘stay at home’ parent and carried out the majority of care for Jacob which includes helping him in all aspects of daily living. However, Darren helped if he was home and had not worked a night shift the previous night. When Darren works night shifts Anne attends to Jacob at night but when Darren is at home they share the night-time care of Jacob.
Data collection
Darren and Anne chose to complete written sleep diaries for the two week period and Anne recorded an audio sleep diary on behalf of Jacob. Anne also took photographs for Jacob, checking with him what aspects of his bedroom he wanted photographed. Anne completed the Chailey sleep questionnaire for Jacob and her PSQI and Darren filled in his own PSQI. Actiwatches were worn by all for the two week period with no issues reported. However, when I downloaded the Actiwatch data, Jacob’s watch had stopped working after one week of data collection, despite being fitted with a new battery before data collection started.
Jacob chose to have Anne present for his consent visit and for his interview. Because of his age, severe disabilities, and communication methods I was a little uncertain about Jacob’s level of understanding. However, he seemed to understand the consent form questions and was able to give his clear ‘yes’ response. I felt I had to adapt the interview topic guide slightly to try and make it, and my language, simpler. Anne appeared to be confident that Jacob understood the questions, although she would, at times, interject and re-phrase questions. Occasionally, Anne would also answer the questions herself and I had to attempt to re-direct the question back to Jacob. We conducted Jacob’s interview in one visit, however, I did note in my research diary that Jacob’s concentration and focus dwindled near the end of the interview and that
151 I should have suggested coming back another time to finish the interview. Anne and Darren chose to be interviewed together.
Sleep overview for the Gibson family
Darren, Anne and Jacob all had disturbed and disrupted sleep. For Darren this was a result of working night shifts and, when home at night, being woken by, and attending to, Jacob. When Darren worked a night shift he tried to get at least 3 hours sleep the following day.
Jacob had 9mg of melatonin at bedtime but it could still take him more than 1 hour to fall asleep. Jacob woke every night, usually up to 3 times and these waking periods lasted up to 30 minutes but sometimes for much longer.
Anne and Darren heard Jacob during the night via a baby monitor and Jacob also wore a SATs monitor clip on his finger. The SATs monitor measured Jacobs’s oxygen levels and if these dropped below a certain level the monitor triggered an audio alarm that Darren and Anne could hear. A drop in his oxygen levels could be indicative of Jacob having a prolonged seizure. However, often at night the finger clip fell off when Jacob moved and this also triggered the alarm. During the 2 week data collection period Anne reported in her sleep diary that the SATs monitor triggered the alarm 12 out of 14 nights (some nights it was up to 3 times) because the clip had moved or fallen off. Anne or Darren checked on Jacob each time the alarm sounded. On one day the alarm sounded at 6.15am and when Anne attended to him Jacob was having a severe seizure that required an ambulance to be called.
In their PSQI’s Darren and Anne both reported their sleep quality over the last month as ‘fairly bad’ and reported that they had 4-5 hours of sleep per night. Both reported that attending to their child’s health needs was the main reason for their trouble sleeping and Darren also reported experiencing stress related to Jacob’s health as a main contributing factor, although Anne did not.