Sostenibilidad, economía circular e innovación

The Edwards family consists of Aileen and Mark and their 3 children Willow, Stanley (child with CP) and Alex. All 5 family members participated in the research. The family live in a 3 bedroom house. All 3 bedrooms are located upstairs in the house. Stanley and Alex shared a bedroom at the time of the study. At that time, discussions were taking place between the family and their local authority on extending and converting the ground floor to create a downstairs bedroom for Stanley. The family received some care help for Stanley through social services and the direct payment scheme. They had one carer every Friday after school that would take Stanley out for social activities and also help feed him his dinner at home. Another carer came one evening every other week from 7pm to 10pm. She would help get Stanley ready for bed.

Sometimes when this carer was present Aileen and Mark would go out for the evening. Stanley also spent one night every half term at the residential unit of his school. The family also had 14 nights a year at a local hospice. The Edwards family usually stayed at the hospice all together as a family for 2 or 3 nights at a time. At the hospice, Stanley had his own bedroom and was looked after during the night by the hospice staff.

Stanley Edwards

Stanley, 7 years old, has severe bilateral (whole body involvement) dyskinetic (Choreo athetoid type) CP. Stanley is non-ambulant and uses a power wheelchair which Stanley was learning to self drive. Stanley was able to sit for varying amounts of time unaided and was able to move himself short distances

131 in a sitting position on the floor. Stanley is at GMFCS level IV. Stanley had limited verbal communication at the time of the study although he was able to clearly say the words ‘yes’ and ‘no’. He used some simple makaton sign language signs and would use his hands and his eyes to point to chosen objects. Stanley also made ‘choices’ by choosing between picture symbols that were presented to him by tapping his hand on the chosen symbol. For answering ‘Yes’ and ‘No’ questions, Stanley sometimes liked the questioner to put out their hands, with their right hand denoting ‘Yes’ and their left hand denoting ‘No’. Stanley would tap one of the questioner’s hands depending on his answer. Stanley’s CFCS level is IV. I found communication with Stanley became easier as I got to know him and his different ways of communicating better.

Stanley has epilepsy and Factor V Leiden thrombophilia. Aileen noted in the Chailey sleep questionnaire that Stanley has small seizures (myoclonic jerks and absences) daily. More severe seizures (which Aileen terms as ‘drop’

seizures as well as tonic seizures) occur approximately once a week. At the time of the study Stanley was taking one anti-epileptic drug twice a day. He was also prescribed an emergency medication to be administered when he had severe and prolonged seizures. Stanley was also prescribed Melatonin which his parents gave him before bedtime approximately twice a week. Both Aileen and Mark commented to me that they were unsure how much difference the melatonin made in terms of helping Stanley fall, and stay, asleep.

At the time of the study Stanley attended a special needs school on a full time basis.

Willow Edwards

Willow was 10 years old at the time of the study and has no disabilities or additional needs. At the time of the data collection, Willow found out she had passed entrance exams for a local private boarding school. She and her parents were deciding whether she would go to the private boarding school or to her local secondary mainstream school. At the time of the study, she attended a mainstream primary school.

132 Alex Edwards

Alex was 6 years old and has no disabilities or additional needs. Alex attended the same mainstream primary school as Willow at the time of the study.

Aileen and Mark Edwards

Aileen was a full-time ‘stay at home’ mother at the time of the study and Mark worked full-time in the IT sector. Aileen carries out the majority of care for Stanley which includes helping him in all aspects of daily living, for example, feeding, toileting, dressing, washing, moving and attending to him at night. At the time of the study she had a back injury and was unable to lift or carry Stanley so Mark undertook these tasks. Mark would also help settle Stanley to sleep at bedtime.

Data Collection

Aileen completed the Chailey sleep questionnaire for Stanley and the CSHQ for both Willow and Alex. Aileen and Mark completed their own PSQI questionnaires. Written sleep diaries were chosen. Aileen, Mark and Willow completed their own sleep diaries. Aileen completed Stanley’s and Alex’s diaries in consultation with them. Willow and Alex took their own photographs.

Aileen helped Stanley take his photographs under Stanley’s direction. They were all happy to wear the Actiwatches and only one night of missing actigraphy data for Mark was noted. Aileen sat in on Stanley’s, Willow’s and Alex’s separate interviews. Stanley’s interview was carried out over two visits because he found the process of communication tiring, at times frustrating and his attention waned. I also carried out Alex’s interview in two parts. This was because Alex’s focus decreased after about 20 minutes and he said he was hungry. We took a break so Alex could have a snack and some time to play.

While he was having a break I carried out Willow’s interview, after which I carried on with Alex’s interview. Aileen was interviewed alone but she also sat in on Mark’s interview, during which she also contributed.

133 Sleep overview for the Edwards Family

All members of the Edwards family reported that they had disturbed and disrupted sleep. Stanley was often reluctant to go to bed at bedtime and it would take him some time to fall asleep. During this time he was often very restless physically. In order to fall asleep he liked one of his parents to lie with him (usually Mark). Stanley usually woke between 1 and 3 times every night and required Aileen (and sometimes Mark) to attend to him and help him fall back asleep. It was not always clear why Stanley woke but often it was due to him moving into an uncomfortable position. Aileen also reported in the Chailey sleep questionnaire that Stanley sometimes woke in pain due to being constipated.

Bedtime was also difficult for Alex. Because Alex and Stanley shared a bedroom they often disturbed each other at bedtime, resulting in it taking prolonged periods of time for them to each fall asleep. To try and avoid this Aileen and Mark often staggered the children’s bedtime and had also recently made the decision that Alex should go to sleep at bedtime in their bed. Mark then moved Alex back to his own bed when he and Stanley were both asleep.

Alex reported that he sometimes got woken in the night when Stanley woke up.

Willow was also reluctant to go to bed at bedtime and reported that she often took a long time to fall asleep. She often chose to secretly read after

‘lights out’ and also reported being disturbed at bedtime by both her brothers’

being noisy and disruptive. Although she did not report waking in the night she did feel that she was very restless at night.

Both Aileen and Mark felt that they generally had poor sleep. This was, in part, due to being woken up by Stanley needing assistance during the night.

However, both reported that it often took them a long time to fall asleep. Both felt that stress negatively affected their quality of sleep. This stress was in part related to Stanley and his health needs, specifically his epilepsy, and also, for Aileen, the proposed plans to build a downstairs bedroom for him. Aileen and Mark also reported that stress related to other areas of their lives negatively impacted on their sleep. For Aileen this was related to the other c hildren, her

134 own health issues and wider family factors. For Mark, work-related stress was highlighted as significant.