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The specialist nurse in the field of childhood sleep
disorders.
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| Abstract: |
Sleep disorders of childhood are common and cause much distress to
children and families. Assessment and treatment services are limited in
the UK. More multidisciplinary specialist facilities are needed. The
professional interest shown in sleep training programmes and the public
demand in response to media coverage of sleep issues suggests that these
are likely to develop. A sleep disorder service has been in operation in
Southampton for 25 years and this paper illustrates the organisational
challenges for staff who are contracted on a largely sessional basis and
have other healthcare roles. Experience in Southampton suggests that in
such services the specialist nurse can play a pivotal role--as
practitioner, team co-ordinator, waiting list manager, link person with
other agencies, junior staff supervisor, trainer and educator. A
specialist nurse has been in post in Southampton since 1998. This paper
looks at the role diversity of the specialist nurse, the strengths that
can be offered and the ways being in post has helped to develop the
service. Key words Sleep disorder, children, specialist nurse |
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| Article Type: | Report |
| Subject: |
Sleep disorders in children
(Care and treatment) Nurses (Practice) |
| Author: | Caulfield, Angela |
| Pub Date: | 02/01/2011 |
| Publication: | Name: Community Practitioner Publisher: Ten Alps Publishing Audience: Academic Format: Magazine/Journal Subject: Health; Health care industry Copyright: COPYRIGHT 2011 Ten Alps Publishing ISSN: 1462-2815 |
| Issue: | Date: Feb, 2011 Source Volume: 84 Source Issue: 2 |
| Topic: | Event Code: 200 Management dynamics |
| Product: | Product Code: 8043100 Nurses NAICS Code: 621399 Offices of All Other Miscellaneous Health Practitioners |
| Geographic: | Geographic Scope: United Kingdom Geographic Code: 4EUUK United Kingdom |
| Accession Number: | 248402392 |
| Full Text: |
Introduction Only in the past 20 years has the importance of the sleep disorders of childhood and adolescence been fully recognised (Meltzer et al, 2010). Sleep disorders are surprisingly common in childhood, with up to 25% of all children experiencing difficulties at some time (Mindell and Owens, 2003). Up to one-third of healthy pre-schoolers have difficulties settling to sleep or waking at night and, contrary to popular belief, if not addressed effectively in young children such problems may persist until later childhood (Pollock, 1994). Prevalence rates are especially high in populations of children with learning disabilities where sleep disturbance rates of between 34% and 86% have been described (Clements et al, 1986; Bartlet and Beaumont, 1998). Poor quality or inadequate sleep in childhood can have a negative effect on general health and physical stamina, behaviour (Holley et al, 2011), mood, emotional wellbeing, learning (Hill et al, 2007) and educational achievement (Fallone et al, 2005). When parents have tried for many months or years to solve the problem with little success, further family difficulties occur that may compound the sleep problems. These difficulties include exhaustion, parental depression, marital discord, deterioration in parent-child relationships and a reduction in the number and quality of socially supportive interactions (Meltzer and Mindell, 2007). Despite such striking prevalence rates, risks of persistence of childhood sleep disorders and negative consequences for the child, many clinicians are poorly informed about their causes, consequences and management (Mindell et al, 1994). The main categories of sleep disorders have been set out by the American Academy of Sleep Medicine (2005) (see Table 1). Many of these disorders respond well to treatment, usually behavioural, medical or a combination of the two. Significant improvements are possible using proven techniques and the entire family can reap the benefits of a good night's sleep. The employment of nurses in clinical work with children and adults in all paediatric fields is an important factor in the improvement of these services in recent years (Dijkstra et al, 2004). While the potentially valuable role of nurses in paediatric sleep medicine has been recognised in the literature (Johnson et al, 1995; Mindell and Owens, 2003), scant attention has been directed to nurses fully specialised in this field. A specialist nurse was appointed to the Southampton Children's Sleep Disorder Service (SCSDS) in 1998. Over the years, the specialist nurse has played a key role in the way the service has changed and developed. Early challenges From small beginnings in 1984, the SCSDS developed in an unplanned way with a steadily increasing workload. Referrals came mainly from GPs and health visitors who were aware of the service. By 1998, the multidisciplinary team ran one hospital and two community clinics a month. The team included a seconded health visitor, a paediatrician, psychiatrist and psychologist, and there was limited secretarial support. Problems were identified as the number of clients being referred increased: * Few opportunities to discuss cases * Conflict with main professional roles * Limited administrative support * Unsatisfactory post-assessment treatment * Poor record-keeping * Insufficient sleep clinic contact * Unmet educational needs. Few opportunities to discuss cases The multidisciplinary team only came together three times a month for the clinics. As workers had professional bases in different parts of the healthcare system and rarely met outside the actual clinics, there were few opportunities for informal discussion of cases or sleep disorder work in general. Conflict with main professional roles Helping stressed families with major sleep problems outside clinic sessions often led to conflict for the staff--there were divergent needs of the families coping with sleep disorders on one hand and the main role of the healthcare professional on the other. Limited administrative support There were problems due to limited administrative and secretarial support. This affected appointment arrangements, obtaining records and communication from clients and agencies. Unsatisfactory post-assessment treatment The organisation and implementation of post-assessment treatment programmes was often unsatisfactory. This is a problem that has also been noted in other centres (Stores and Wiggs, 1998). Poor record-keeping Record-keeping through lack of time was often poor. Insufficient sleep clinic contact GPs and other agencies seeking advice and guidance often had difficulty making contact with sleep clinic personnel. When contact was made, sufficient time was rarely available for adequate discussion. Unmet educational needs As the healthcare system at large came to appreciate the importance of sleep in the lives and development of children, there were many requests for educational help in the form of lectures and short training courses. Not all of these requests could be met. Appointment of a specialist nurse A specialist nurse has now been in post for more than a decade. Candidates for the post were required to have a wide range of skills, knowledge and expertise in: * Child development * General paediatrics * Basic ENT problems * Disability * Sleep physiology * Sleep disorders * Behavioural therapy * Family dynamics * Community work * Team working * Teaching. To date there have been two post-holders, both with research experience. The first contributed to a treatment study (Bartlet and Beaumont, 1998) and the second is currently participating in a project to evaluate the effectiveness of sleep education workshops for parents. The whole-time nature of the post (since 2009) is important, as it means there is service availability five days a week. The specialist nurse has played a very important part in the development of the service and many of the skills acquired from a background in nursing have proved invaluable. Experience of working with families in their own homes together with a good understanding of attachment issues and child development has ensured that the team approaches the assessment of families in a holistic way, and is always mindful of the strengths and vulnerabilities within a family when planning an individual programme of care. A nursing background has also proved beneficial when leading the team in care planning and developing and evaluating behaviour programmes. The specialist nurse also recognised the need for flexibility and creativity to meet government waiting list targets and has been able to maximise the strengths of the team, a skill often deployed when working in multidisciplinary teams in the community. SCSDS had a 300% increase in referrals between 2007 and 2010, but without a corresponding increase in staff. To manage this workload, new models of care have been developed and a sleep education workshop implemented for parents and carers. Another significant change in the service has been the use of sleep technology such as actigraphy (nocturnal movement recording used to differentiate between sleep and wake), home-based oximetry (which measures blood oxygen levels) and polysomnography (which detects stages of sleep and measures respiratory effort, air flow and oxygen saturation). Specialist nurse role The role of the current specialist nurse within the SCSDS is believed to be a unique post, with no similar position being held within the UK. The role is broadly divided into three main areas the first being managerial and the second clinical, which combined ensure the smooth running of the service, and the third being education of health professionals outside of the service. The managerial aspects of the role involve grading referrals to ensure that they meet the service criteria and that children are seen in the appropriate setting, ie clinic or workshop. The role also involves managing waiting list targets, ensuring that appropriate personnel are available for the weekly clinics, and managing and supporting both secretarial staff and the two experienced behavioural advisors. Other aspects that fall within the specialist nurse remit include planning twice-monthly team meetings, ensuring that there is correct support for students undertaking placements within the service, and monitoring the budget for the service. It is also vital that the sleep clinic paperwork--eg assessment forms, screening tools and patient satisfaction questionnaires--are reviewed regularly and upgraded to ensure that clients receive the best possible care at all times. The clinical aspects of the role involve assessing, diagnosing and treating children with sleep disorders. The assessment process is carried out either in a clinic setting or within a workshop setting. In both of these settings, the appropriate skill mix of staff must be matched to the perceived need of the client, and it is the job of the nurse specialist to ensure that this occurs. It is also vital that after assessment, the correct member of the team is allocated to work with the family according to their experience and discipline, ie a psychologist may be allocated to work with a child suffering anxiety-related insomnia, or a behavioural advisor to work with a child suffering from a behavioural insomnia disorder. Clinical supervision of junior staff is also a very important aspect of the specialist nurse role, to ensure that children and their families receive the highest level of appropriate care. Liaising with potential referrers as to the appropriateness of referrals and if inappropriate sign-posting the referrer elsewhere, or offering remote management advice and information, is also part of the role. One of the educational aspects of the specialist nurse role is to support the running of the twice-monthly sleep education workshops for parents and the post-workshop drop-in sessions. Another aspect is to work with other members of the team to deliver local training to health or other professionals, as well as to play a key role in the delivery of a national sleep training programme. Another important aspect of the role is to raise awareness of the need for good 'sleep hygiene' (a term widely used to describe the important role daily activity, regular meals, sleep environment and routine play in ensuring healthy sleep) and the potential risks associated with sleep deprivation. One way in which this is done is to invite two professionals to participate in sleep workshops. A long waiting list of professionals wishing to attend currently exists, which highlights the growing interest in the field of sleep medicine. Other stimulating aspects of the role have involved working with the media in the making of a documentary about the work of the clinic (My Child Won't Sleep, Outline Productions, ITV1 June 2009). It is also important that as the team manager, the specialist nurse is aware of new developments and the latest research in the field of paediatric sleep medicine. This can be difficult to achieve, because the number of paediatric sleep clinicians worldwide is comparatively small and the amount of information available is therefore limited. However, being aware of and attending international conferences that are dedicated to paediatric sleep and participating in special interest teleconferences enables the specialist nurse to remain as up to date as possible. Impact on the service Following the first nurse specialist appointment in 1998, the service functioned more effectively in several respects. Clinic arrangements, case note availability and secretarial efficiency improved. Communication within the team itself was more effective and relaxed. More time was found for case discussion. Liaison with other agencies became easier. Out of area families with little local support were able to maintain contact by phone. Families in and around Southampton benefited from more consistent supervision of their behavioural programmes. Feedback from health visitors showed their appreciation of the guidance and advice available to them in their primary settings. Time was found to run more training courses for healthcare staff. In addition to these initial improvements, the advent of a full-time specialist nurse has led to increased availability to clients and professionals and to the development of new models of care for children and their families. Discussion and conclusion Health professionals in the UK have been slow to recognise the importance of paediatric sleep medicine (Stores and Wiggs, 1998). Only in the sub-field of obstructive sleep apnoea has much progress been made (Gozal, 1998). Yet, as already stated, sleep problems are experienced by 20% to 30% of healthy children and adolescents regardless of age, and are even more common in special populations such as disabled or chronically ill children. A UK survey of parents of disabled children found that 76% of families had experienced stress or depression, and 72% were suffering from lack of sleep (Contact a Family, 2003). Support for these families is limited or non-existent. The need for better services is clear. This view has also been expressed in the US (Meltzer et al, 2008). In an era of limited resources, sleep clinic cover is patchy. The situation north of the border is better--a charity called Sleep Scotland provides a variety of services from its Edinburgh base. In cooperation with statutory agencies, sleep clinics have been organised in most areas (Ansell and Vinnie, 2008). Southampton sleep clinic has worked in partnership with Sleep Scotland to train sleep counsellors, and more recently joined forces with Face2Face (Scope) to roll out training nationally across the whole of the UK. It is difficult to envisage how paediatric sleep medicine will develop in the next decade--as develop it must. In the US, the emphasis has been on 'children's sleep centres' attached to major hospitals. For the UK, Stores and Wiggs (1998) have proposed a three-tier system that would fit neatly into the current structure of the NHS. They suggest that there should be: * A primary level service largely conducted by health visitors and coping with the common settling and night waking problems of young children * A secondary service, multidisciplinary in structure, for more difficult diagnostic and treatment problems * A tertiary or regional service with a high level of expertise in paediatric sleep medicine. In this model, a specialist nurse could play a key role attached to the secondary or tertiary services as practitioner, co-ordinator, educator and possibly researcher. As key worker in a multidisciplinary team, the breadth of the specialist nurse's professional expertise has much to commend it. Paediatric knowledge, behavioural and family dynamic skills, child abuse awareness and community experience are all fields that relate to sleep work. The nursing profession has already made important contributions to paediatric sleep medicine (Mindell and Owens, 2003). The interest shown by nurses in this field suggests that these are likely to continue. No potential competing interests declared. KEY POINTS * Sleep problems are common in children and have negative consequences for the child and family * Some sleep problems persist if not treated * Behavioural interventions work well when sleep problems have a behavioural component * Professional knowledge and training in the management of children's sleep disorders is generally lacking * Specialist nurses in sleep medicine can contribute to the efficient running of a multidisciplinary service Further information For details of five-day sleep practitioner training courses to develop professional skills in paediatric sleep management, please email: angela.caulfield@solent.nhs.uk Acknowledgments The author wishes to thank and acknowledge Dr Leslie Bartlet, honorary consultant psychiatrist who founded SCSDS, and Dr Catherine Hill, consultant paediatrician, for their thoughtful reading and comments on this paper. References American Academy of Sleep Medicine. (2005) International Classification of Sleep Disorders, (second edition). Westchester, Illinois: American Academy of Sleep Medicine. Ansell J, Vinnie EL. (2008) A professional training programme to address sleep difficulties in children with disabilites. Journal of Sleep Research 17(S1): 125. Bartlet LB, Rooney V, Spedding S. (1985). Nocturnal difficulties in a population of mentally handicapped children. British Journal of Mental Subnormality 31: 54-9. Bartlet LB, Beaumont J. (1998) Treating the sleep disorders of children with disabilities and illness: a one year project. Clinical Child Psychology and Psychiatry 3(4): 591-612. Carter M, McCaughey E, Annaz D et al. (2009) Sleep problems in a Down syndrome population. Archives of Diseases in Childhood 94(4): 308-10. Clements J, Wing L, Dunn G. (1986) Sleep problems in handicapped children: a preliminary study. Journal of Child Psychology and Psychiatry 27(3): 399-407. Contact a Family. (2003) No time for us: relationships between parents who have a disabled child: a survey of over 2000 parents in the UK. See: www.cafamily.org.uk/pdfs/no_time_for_us_report.pdf (accessed 14 Jan 2011). Dijkstra RF, Braspenning JC, Huijsmans Z et al. (2004) Patients and nurses determine variation and adherence to guidelines at Dutch hospitals more than internists or settings. Diabetic Medicine 21(6): 586-91. Fallone G, Acebo C, Seifer R et al. (2005). Experimental restriction of sleep opportunity in children: effects on teacher ratings. Sleep 28(12): 1561-7. Gozal D. (1998) Sleep-disordered breathing and school performance in children. Pediatrics 102(3pt1): 616-20. Hill CM, Hogan AM, Karmiloff-Smith A. (2007) To sleep, perchance to enrich learning? Archives of Disease in Childhood 92(7): 637-43. Holley SL, Hill CM, Stevenson J. (2011) An hour's less sleep is a risk factor for childhood conduct problems (in press) Child: Care, Health and Development. Johnson AH, Wise MS, Jimmerson KR. (1995) The nurse practitioner role in a pediatric sleep clinic. Journal of Pediatric Health Care 9(4): 162-6. Meltzer LJ, Mindell JA. (2007) Relationship between child sleep disturbances and maternal sleep, mood, and parenting stress: a pilot study. Journal of Family Psychology 21(1): 67-73. Meltzer LJ, Moore M, Mindell JA. (2008) The need for interdisciplinary sleep clinics. Behavioral Sleep Medicine 6(4): 268-82. Meltzer LJ, Crosette J, Ramos M et al. (2010) Prevalence of diagnosed sleep disorders in primary care practice. Pediatrics 125(6): 1410-8. Mindell JA, Moline ML, Zendell SM et al. (1994) Pediatricians and sleep disorders: training and practice. Pediatrics 94(2pt1): 194-200. Mindell JA, Owens JA. (2003) Sleep problems in pediatric practice: clinical issues for the pediatric nurse. Journal of Pediatric Health Care 17(6): 324-31. Pollock JI. (1994) Night-waking at five years of age: predictors and prognosis. Journal of Child Psychology and Psychiatry 35(4): 699-708. Stores G, Wiggs L. (1998) Clinical services for sleep disorders. Archives of Diseases in Childhood 79(6): 495-7. Angela Caulfield DipN, HV, SRN Specialist nurse, Southampton Children's Sleep Disorder Service, Solent Healthcare Correspondence: angela.caulfield@solent.nhs.uk Table 1. International Classification of Sleep Disorders (American
Academy of Sleep Medicine, 2005)
Sleep disorders Clinical examples
Insomnias--primary sleep disorders that cause:
* Difficulty getting off to sleep Settling problems
* Difficulty maintaining sleep Night waking
* Non-restorative sleep Early waking
Hypersomnias Narcolepsy, Kleine-Levin syndrome
Parasomnias Night terrors, sleepwalking
Circadian rhythm disorders Delayed sleep phase disorder,
advanced sleep phase disorder
Sleep-related movement disorders Restless legs syndrome, periodic
limb movement disorder, rhythmic
movement disorder
Sleep-related breathing disorders Obstructive sleep apnoea |
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