1. Factors affecting the use of night-time postural management equipment PMG 2009 Ginny Humphreys Professional Doctorate student, University of Brighton This study has received funding from PMG. Thank you PMG.

2. Research question What factors influence the experience of using a sleep system at night for a child with cerebral palsy?

3. Background MacKeith consensus statement recommends that children with bilateral CP in GMFCS levels IV and V should start 24 hour postural management programmes in lying as soon as appropriate after birth (Gericke 2006). MacKeith consensus statement recommends that children with bilateral CP in GMFCS levels IV and V should start 24 hour postural management programmes in lying as soon as appropriate after birth (Gericke 2006).

4. Children with CP have a higher incidence of sleep problems than children with no health problems (Newman et al 2006) Children with CP have a higher incidence of sleep problems than children with no health problems (Newman et al 2006) National Service Framework mentions sleep problems in children with disabilities and that only a minority of families get help. National Service Framework mentions sleep problems in children with disabilities and that only a minority of families get help.

5. Aims of study To understand the factors that influence a child’s use of a sleep system at night. To understand the factors that influence a child’s use of a sleep system at night. To explore the part therapists play in the child and family’s experience of using a sleep system. To explore the part therapists play in the child and family’s experience of using a sleep system. To explore whether sleeping in a sleep system affects the quality of sleep. To explore whether sleeping in a sleep system affects the quality of sleep.

6. Asking the children what they think There are very few studies asking children about therapy intervention and none asking about sleeping in a sleep system. There are very few studies asking children about therapy intervention and none asking about sleeping in a sleep system. Unless children with communication and/or cognitive difficulties are the focus of the research they will inevitably be excluded (Morris 2003). Unless children with communication and/or cognitive difficulties are the focus of the research they will inevitably be excluded (Morris 2003).

7. Method Sample Sample Children with moderate or severe CP (GMFCS III - V) Children with moderate or severe CP (GMFCS III - V) Aged 18 months – 9 years Aged 18 months – 9 years On the caseloads of therapists at the centres involved in the study On the caseloads of therapists at the centres involved in the study Whose therapist has just prescribed a sleep system Whose therapist has just prescribed a sleep system Number Number 5 - 10 cases (a case is the child, their therapist and parents)

8. Method Therapist uses the Chailey Sleep Questionnaire to assess risks before prescribing sleep system Therapist uses the Chailey Sleep Questionnaire to assess risks before prescribing sleep system Interview with the therapist x 1 Interview with the therapist x 1 Interviews with the parent/s x 2 Interviews with the parent/s x 2 Interviews with the child x 2 Interviews with the child x 2 Parents keeps sleep diary for 10 days x 2 Parents keeps sleep diary for 10 days x 2

9. Pilots 1) Interview with 9 year old veteran user of a sleep system. 2) Interview with a parent. 3) Interview with her daughter, prescribed a sleep system but doesn’t use it at night. 4) Group game to get vocabulary from children.

10. Pilot: Parent of child with complex difficulties Millie has never slept through the night and usually wakes several times each night. Millie has never slept through the night and usually wakes several times each night. She cannot fall asleep without a parent close to her. She cannot fall asleep without a parent close to her. She has never slept in her prescribed sleep system. She has never slept in her prescribed sleep system. Millie’s parents have only been out together once at night since Millie was born (she is now 9 years old). Millie’s parents have only been out together once at night since Millie was born (she is now 9 years old). Millie’s mother sleeps in the same room as Millie and until recently in the same bed. Millie’s mother sleeps in the same room as Millie and until recently in the same bed. Millie and her mother have chronic sleep deprivation. Millie and her mother have chronic sleep deprivation.

11. Pilot: Which words might they want? Pass the Parcel game to get vocabulary that we might not have thought about Pass the Parcel game to get vocabulary that we might not have thought about Bored Bored Alone Alone Cross Cross

12. Emerging data From therapists Clinical reasoning when prescribing a sleep system Clinical reasoning when prescribing a sleep system From some therapists From some therapists Ad hoc, not evidence-based Ad hoc, not evidence-based Pathways/protocols/guidelines not being used Pathways/protocols/guidelines not being used No reference to hip X-rays No reference to hip X-rays “I just thought well, we’ll try that.”

13. Therapists are sometimes prescribing sleep system to enable better sleep, but... Therapists are sometimes prescribing sleep system to enable better sleep, but... No full sleep history taken No full sleep history taken Reasons for children not sleeping are often very complex Reasons for children not sleeping are often very complex Behavioural factors not considered Behavioural factors not considered

14. Desired outcomes of SS for parents For better posture now and in the future For better posture now and in the future For better sleep For better sleep Child wakes up frequently Child wakes up frequently Child gets stuck at night Child gets stuck at night Child gets cramps / pain Child gets cramps / pain Stiff in the morning Stiff in the morning Child insecure/not feeling safe in bed Child insecure/not feeling safe in bed

15. You have to persevere with getting child used to sleep system “It took her about 3 weeks to get used to it. We had screaming hab-dabs most nights because it’s sleeping in a different way. “It took her about 3 weeks to get used to it. We had screaming hab-dabs most nights because it’s sleeping in a different way. She only wakes once a night now and sometimes she sleeps all through. She only wakes once a night now and sometimes she sleeps all through. Nursery say her concentration is much better.” Nursery say her concentration is much better.”

16. From those parents with children who don’t sleep “Me and my husband are both on anti- depressants. Sometimes when he’s teasy all day, you don’t lose your temper but you just don’t have the patience anymore. And we have constant headaches. I think it’s because we’re so tired.”

17. Another parent “I think they thought a sleep system would make her sleep better but there were other problems too.” “Not sleeping does wreck your whole family life.” “I don’t have a marriage anymore.”

18. From one 3 year old child prior to having a sleep system She gets pain at night and it wakes her up. She gets pain at night and it wakes her up. Why do you wake up in the night when it’s dark?

19. In her sleep system She is comfortable in her sleep system She is comfortable in her sleep system When you are in your new special bed are you ….?

20. From another 3 year old prior to having a sleep system She doesn’t like going to bed! She doesn’t like going to bed! Why don’t you like going to bed?

21. Outcomes of this study Benefits for clinical practice Benefits for clinical practice Practice guidelines for therapists when thinking of prescribing night time postural management equipment Practice guidelines for therapists when thinking of prescribing night time postural management equipment Highlighting the need for sleep intervention services locally Highlighting the need for sleep intervention services locally

22. References Gericke, T. (2006). "Postural management for children with cerebral palsy: consensus statement." Developmental Medicine and Child Neurology 48(4): 244. Gericke, T. (2006). "Postural management for children with cerebral palsy: consensus statement." Developmental Medicine and Child Neurology 48(4): 244. Morris, J. (2003). "Including All Children: Finding Out About the Experiences of Children with Communication and/or Cognitive Impairments." Children and Society 17: 337-348. Morris, J. (2003). "Including All Children: Finding Out About the Experiences of Children with Communication and/or Cognitive Impairments." Children and Society 17: 337-348. Newman, C., M. O'Regan and O. Hensey (2006). "Sleep disorders in children with cerebral palsy." Developmental Medicine and Child Neurology 48(7): 564-568. Newman, C., M. O'Regan and O. Hensey (2006). "Sleep disorders in children with cerebral palsy." Developmental Medicine and Child Neurology 48(7): 564-568.

23. Thank you