Attitudes, beliefs, and perceptions of caregivers and rehabilitation providers about disabled children’s sleep health: a qualitative study

BMC Pediatrics

Michelle A Williams²  Susan Redline³  Ross D Zafonte¹  Clarita Barbosa⁴  Sara Gorman⁵  Micah Pepper⁴  Juan Carlos Velez⁴  Bizu Gelaye²  Xiaoli Chen² 

[1] Spaulding Rehabilitation Hospital, Massachusetts General Hospital Physical Medicine and Rehabilitation Service, Boston, MA 02114, USA;Department of Epidemiology, Harvard School of Public Health, Boston, MA 02115, USA;Department of Medicine, Harvard Medical School, Boston, MA 02115, USA;Centro de Rehabilitación Club de Leones Cruz del Sur, Punta Arenas, Chile;Department of Health Policy & Management, Columbia University Mailman School of Public, Health, New York, USA

关键词: Focus group;    Health care provider;    Parent;    Sleep hygiene;    Disability;    Child;   

Others  :  1121272
DOI  :  10.1186/1471-2431-14-245

 received in 2014-07-18, accepted in 2014-09-25,  发布年份 2014

【 摘 要 】

Background

Children with disabilities are more likely to have sleep disturbances than children without disabilities. Identifying attitudes, beliefs, knowledge, and perceptions of caregivers and health professionals is essential in developing effective intervention programs to improve disabled children’s sleep health. However, no such qualitative data about adults who have key roles in the life and daytime activities of children with disabilities are available. This qualitative study aimed to understand attitudes, beliefs, knowledge, and perceptions about disabled children’s sleep hygiene among caregivers and rehabilitation providers of children with disabilities.

Methods

Twenty seven adults, including nine primary caregivers and eighteen rehabilitation providers, participated in five focus group discussions between September and December 2012 at the Rehabilitation Center in Punta Arenas, Chile. A trained facilitator guided focus group discussions using a semi-structured script. Audiotapes and transcripts of focus group discussions were reviewed and analyzed for recurrent themes.

Results

Participants identified seven themes related to children’s sleep hygiene: lifestyle behaviors, family factors, children’s disabilities and/or comorbidities, environmental factors, adults’ responsibilities for children’s sleep, perception of good sleep, and parental distress about children’s sleep problems. While both caregivers and rehabilitation providers recognized the importance of sleep for children’s health and functioning, they differed in their understanding of how sleep hygiene practices influence sleep. Rehabilitation providers recognized the negative influence of electronics on sleep and the positive influence of sleep routines. In contrast, caregivers reported use of television/movie watching and stimulants as coping strategies for managing children’s sleep problems.

Conclusions

Caregivers may benefit from better understanding the influence of electronics and stimulant use on child sleep health. Rehabilitation providers are well positioned to provide educational messages to both children and caregivers in order to change their attitudes, perceptions, and practices surrounding sleep. These qualitative data are valuable in developing intervention programs aimed at improving sleep health among children with disabilities.

【 授权许可】

   
2014 Chen et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Disability in the Life Cycle: Invest in Children. http://www.unicef.org/disabilities/ webcite. Accessed October 1, 2013
• [2]Churchill SS, Kieckhefer GM, Landis CA, Ward TM: Sleep measurement and monitoring in children with Down syndrome: a review of the literature, 1960–2010. Sleep Med Rev 2012, 16(5):477-488.
• [3]Owens JA, Maxim R, Nobile C, McGuinn M, Msall M: Parental and self-report of sleep in children with attention-deficit/hyperactivity disorder. Arch Pediatr Adolesc Med 2000, 154(6):549-555.
• [4]Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E: The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005, 115(6):e626-e636.
• [5]Dabrowska A, Pisula E: Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. J Intellect Disabil Res 2010, 54(3):266-280.
• [6]Sung V, Hiscock H, Sciberras E, Efron D: Sleep problems in children with attention-deficit/hyperactivity disorder: prevalence and the effect on the child and family. Arch Pediatr Adolesc Med 2008, 162(4):336-342.
• [7]Hvolby A, Jorgensen J, Bilenberg N: Actigraphic and parental reports of sleep difficulties in children with attention-deficit/hyperactivity disorder. Arch Pediatr Adolesc Med 2008, 162(4):323-329.
• [8]Galland BC, Elder DE, Taylor BJ: Interventions with a sleep outcome for children with cerebral palsy or a post-traumatic brain injury: a systematic review. Sleep Med Rev 2012, 16(6):561-573.
• [9]Wayte S, McCaughey E, Holley S, Annaz D, Hill CM: Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression. Acta Paediatr 2012, 101(6):618-623.
• [10]Schwartz KA, Pyle SA, Dowd MD, Sheehan K: Attitudes and beliefs of adolescents and parents regarding adolescent suicide. Pediatrics 2010, 125(2):221-227.
• [11]Patton MQ: Enhancing the quality and credibility of qualitative analysis. Health Serv Res 1999, 34(5 Pt 2):1189-1208.
• [12]Ryan GW, Bernard HR: Techniques to identify themes. Field Meth 2003, 15:85-109.
• [13]Shrout PE, Fleiss JL: Intraclass correlations: uses in assessing rater reliability. Psychol Bull 1979, 86(2):420-428.
• [14]Jan JE, Owens JA, Weiss MD, Johnson KP, Wasdell MB, Freeman RD, Ipsiroglu OS: Sleep hygiene for children with neurodevelopmental disabilities. Pediatrics 2008, 122(6):1343-1350.
• [15]Chen X, Beydoun MA, Wang Y: Is sleep duration associated with childhood obesity? A systematic review and meta-analysis. Obesity (Silver Spring) 2008, 16(2):265-274.
• [16]Biggs SN, Pizzorno VA, van den Heuvel CJ, Kennedy JD, Martin AJ, Lushington K: Differences in parental attitudes towards sleep and associations with sleep-wake patterns in Caucasian and Southeast Asian school-aged children in Australia. Behav Sleep Med 2010, 8(4):207-218.
• [17]Short MA, Gradisar M, Lack LC, Wright HR, Dewald JF, Wolfson AR, Carskadon MA: A cross-cultural comparison of sleep duration between US And Australian adolescents: the effect of school start time, parent-set bedtimes, and extracurricular load. Health Educ Behav 2013, 40(3):323-330.
• [18]Velez JC, Souza A, Traslavina S, Barbosa C, Wosu A, Andrade A, Frye M, Fitzpatrick AL, Gelaye B, Williams MA: The epidemiology of sleep quality and consumption of stimulant beverages among Patagonian Chilean College Students. Sleep Disord 2013, 2013:910104.
• [19]Lohsoonthorn V, Khidir H, Casillas G, Lertmaharit S, Tadesse MG, Pensuksan WC, Rattananupong T, Gelaye B, Williams MA: Sleep quality and sleep patterns in relation to consumption of energy drinks, caffeinated beverages, and other stimulants among Thai college students. Sleep Breath 2013, 17(3):1017-1028.
• [20]de Jong E, Visscher TL, HiraSing RA, Heymans MW, Seidell JC, Renders CM: Association between TV viewing, computer use and overweight, determinants and competing activities of screen time in 4- to 13-year-old children. Int J Obes (Lond) 2013, 37(1):47-53.
• [21]Calamaro CJ, Yang K, Ratcliffe S, Chasens ER: Wired at a young age: the effect of caffeine and technology on sleep duration and body mass index in school-aged children. J Pediatric Health Care 2012, 26(4):276-282.
• [22]Cotton S, Richdale A: Brief report: parental descriptions of sleep problems in children with autism, Down syndrome, and Prader-Willi syndrome. Res Dev Disabil 2006, 27(2):151-161.
• [23]Corkum P, Tannock R, Moldofsky H: Sleep disturbances in children with attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry 1998, 37(6):637-646.
• [24]Dahl RE, Puig-Antich J: Sleep disturbances in child and adolescent psychiatric disorders. Pediatrician 1990, 17(1):32-37.
• [25]Oluwabusi OO, Sedky K, Bennett DS: Prazosin treatment of nightmares and sleep disturbances associated with posttraumatic stress disorder: two adolescent cases. J Child Adolesc Psychopharmacol 2012, 22(5):399-402.
• [26]Gehrman PR, Harb GC: Treatment of nightmares in the context of posttraumatic stress disorder. J Clin Psychol 2010, 66(11):1185-1194.
• [27]Beebe DW, Ris MD, Kramer ME, Long E, Amin R: The association between sleep disordered breathing, academic grades, and cognitive and behavioral functioning among overweight subjects during middle to late childhood. Sleep 2010, 33(11):1447-1456.
• [28]Archbold KH, Giordani B, Ruzicka DL, Chervin RD: Cognitive executive dysfunction in children with mild sleep-disordered breathing. Biol Res Nurs 2004, 5(3):168-176.
• [29]Owens J, Spirito A, Marcotte A, McGuinn M, Berkelhammer L: Neuropsychological and behavioral correlates of obstructive sleep apnea syndrome in children: a preliminary study. Sleep Breath 2000, 4(2):67-78.
• [30]Chervin RD, Dillon JE, Bassetti C, Ganoczy DA, Pituch KJ: Symptoms of sleep disorders, inattention, and hyperactivity in children. Sleep 1997, 20(12):1185-1192.
• [31]Bourke-Taylor H, Pallant JF, Law M, Howie L: Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities. J Paediatr Child Health 2013, 49(9):775-782.
• [32]Ball JD, Tiernan M, Janusz J, Furr A: Sleep patterns among children with attention-deficit hyperactivity disorder: a reexamination of parent perceptions. J Pediatric Psychol 1997, 22(3):389-398.
• [33]Saxby H, Morgan H: Behaviour problems in children with learning disabilities: to what extent do they exist and are they a problem? Child Care Health Dev 1993, 19(3):149-157.
• [34]Warren SL, Howe G, Simmens SJ, Dahl RE: Maternal depressive symptoms and child sleep: models of mutual influence over time. Dev Psychopathol 2006, 18(1):1-16.
• [35]Mindell JA, Meltzer LJ, Carskadon MA, Chervin RD: Developmental aspects of sleep hygiene: findings from the 2004 National Sleep Foundation Sleep in America Poll. Sleep Med 2009, 10(7):771-779.
• [36]Short MA, Gradisar M, Wright H, Lack LC, Dohnt H, Carskadon MA: Time for bed: parent-set bedtimes associated with improved sleep and daytime functioning in adolescents. Sleep 2011, 34(6):797-800.
• [37]Morgenthaler TI, Lee-Chiong T, Alessi C, Friedman L, Aurora RN, Boehlecke B, Brown T, Chesson AL Jr, Kapur V, Maganti R, Owens J, Pancer J, Swick TJ, Zak R: Practice parameters for the clinical evaluation and treatment of circadian rhythm sleep disorders. An American Academy of Sleep Medicine report. Sleep 2007, 30(11):1445-1459.
• [38]Wasdell MB, Jan JE, Bomben MM, Freeman RD, Rietveld WJ, Tai J, Hamilton D, Weiss MD: A randomized, placebo-controlled trial of controlled release melatonin treatment of delayed sleep phase syndrome and impaired sleep maintenance in children with neurodevelopmental disabilities. J Pineal Res 2008, 44(1):57-64.
• [39]Carr R, Wasdell MB, Hamilton D, Weiss MD, Freeman RD, Tai J, Rietveld WJ, Jan JE: Long-term effectiveness outcome of melatonin therapy in children with treatment-resistant circadian rhythm sleep disorders. J Pineal Res 2007, 43(4):351-359.
• [40]The Institute of Medicine (IOM)http://www.iom.edu/Reports/2011/Early-Childhood-Obesity-Prevention-Policies/Recommendations.aspx webcite. Accessed October 19, 2013