DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY

ORIGINAL ARTICLE

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep ANNA L TIETZE 1

| BORIS ZERNIKOW 1 | ERIK MICHEL 2 | MARKUS BLANKENBURG3

1 Children’s Pain Therapy and Pediatric Palliative Care, Witten/Herdecke University, Witten; 2 Children’s Hospital Klinikum Friedrichshafen, Friedrichshafen; 3 Paediatrics 1 – Paediatric Neurology and Social Paediatrics, Klinikum Stuttgart Olgahospital / Frauenklinik Kriegsbergstrasse, Stuttgart, Germany. Correspondence to Boris Zernikow, Children’s Pain Therapy and Pediatric Palliative Care, Witten/Herdecke University, Children’s Hospital Datteln, Dr. Friedrich Steiner Str. 5, D-45711 Datteln, Germany. E-mail: [email protected] This article is commented on by Weiss on page 1136 of this issue.

PUBLICATION DATA

Accepted for publication 1st May 2014. Published online 25th June 2014. ABBREVIATIONS

ESS HOST PSQI QoL SF-36 SNAKE

SPMI

Epworth Sleepiness Scale Holistic assessment of sleep and daily troubles Pittsburgh Sleep Quality Index Quality of life Short Form Health Survey [Sleep Questionnaire for Children with Neurological Disorders and other Complexes] Severe psychomotor impairment

AIM In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child’s sleep disturbance affects parental sleep and quality of life (QoL) in this specific patient group. METHOD Parents and their children with SPMI were enrolled from three outpatient centers and one in-patient center in Germany. We administered a set of questionnaires to the parents that addressed their child’s sleep quality, the sleep disturbance-related parental burden, and the impact on both parental sleep and QoL. Additional questionnaires were used to gather data describing our sample group to allow for comparison with published norms. RESULTS Parents of 214 children, adolescents, and young adults with SPMI (114 males, 100 females; mean age 10y 5mo, SD 5y 6mo, range 0.1–25y) responded to the questionnaire set (response rate of 66%). We found severe impairment of parental health status and QoL. More than 50% of the parents suffered from a sleep disorder (e.g. prolonged sleep latency, shortened sleep duration). Sleep disturbances in children, adolescents, and young adults correlated strongly with parental sleep disturbances, parental impairment of physical and mental functioning, parental social functioning, and parental working ability. INTERPRETATION Sleep-related difficulties have a significant sociomedical impact on the parents of children, adolescents, and young adults with complex neurological diseases. Typically, parents are severely affected in various aspects of daily living. There is a need for novel diagnostic and therapeutic approaches that match the complex sociomedical needs of these patients and their families.

Severe psychomotor impairment (SPMI) in children not only affects the child’s night sleep, daytime behavior, and well-being, but it can also have a negative impact on the sleep and quality of life (QoL) of other family members.1–3 The more severe the child’s impairment, the more nighttime care is needed and that care is primarily delivered by the parents. Night-time caring or disturbance by the child’s sleep problems may lead to parental health problems, because even daytime caring for a child or young adult with SPMI is demanding (making undisturbed parental nighttime sleep extremely important). The high prevalence of sleep problems in the SPMI population (approximately 50%–80%) and the importance of parental care, can create medical and social problems for the entire family.4–7 Despite its importance, the direct effect of a child’s sleep disturbance on the sleep patterns of his or her caregiver(s) has not been adequately investigated.8–11 Although little research has been conducted on the topic, the results of © 2014 Mac Keith Press

existing studies are extremely significant: 60% to 95% of caregivers report that their own sleep quality is impaired,9 resulting in fatigue, sleep problems, somatic complaints, depression, or other psychiatric disorders, such as anxiety disorder or affective disturbance.9,10,12 Regardless of the exact diagnosis of the child’s sleep disorder, mothers who reported more sleep problems in their child also experienced increased daytime tiredness themselves.13 This study aimed to assess the sleep patterns and QoL in parents of children, adolescents, or young adults (hereinafter referred to as children) with SPMI using a newly developed and validated questionnaire called the holistic assessment of sleep and daily troubles (HOST) in parents with children with SPMI,14 as well as established measures (Short-Form Health Survey [SF-36],15 Epworth Sleepiness Scale [ESS],16 [Sleep questionnaire for children with neurological disorders and other complexes] SNAKE questionnaire,17 and the Pittsburgh Sleep Quality Index [PSQI]).18 DOI: 10.1111/dmcn.12530

1187

METHOD We conducted a multicenter, questionnaire-based, crosssectional survey of parents of in-patients and outpatients with severe cognitive and psychomotor impairments caused by severe neurological or metabolic disease or related to a congenital or genetic syndrome. Participants Parents and patients were recruited from three in-patient institutions in Germany (the Children’s Hospital Datteln, Datteln; Short-term Home ‘Kleine Oase Datteln’; Children’s Hospice Balthasar, Olpe) and one outpatient facility (Pediatric Palliative Care Team, Datteln) The eligibility criteria were as follows: (1) the patient presented at one of the listed facilities between July 2008 and January 2010; (2) the patient was diagnosed with SPMI; (3) the patient was in a stable phase of the condition and not in a lifethreatening or terminal situation; (4) the patient age ranged from neonate to young adult (25y); and (5) the parents or caregivers were able to communicate verbally or in writing in German. The Children’s Hospice Balthasar and the Short-term Home ‘Kleine Oase Datteln’ primarily provide respite care. The Pediatric Palliative Care Team is often involved in the care of children to provide case management of complicated patients. Patients in terminal care or those in lifethreatening situations were not asked to participate in the study. All parents of children, fulfilling the eligibility criteria were contacted by phone and informed of the aims of the study. If the patient met the eligibility criteria and the parents consented to participate in the study, they were sent a letter of intent, a consent form, a set of questionnaires (see below), and a prepaid return envelope. All parents who did not return the questionnaires within 2 weeks were contacted via phone by the study coordinator (ALT). Parents who did not respond to the phone call did not participate in the study. Questionnaires Parents completed questionnaires covering socio-economic data, parental sleep quality, and sleep disturbance-related parental burden and its impact on the parents’ QoL. We also used questionnaires to gather data on our sample group of parents for comparison with published norms for the SF-36,15,19 PSQI,18,20 and ESS.16 The HOST questionnaire items reflect the impact of a child’s disease (i.e. by the necessity of permanent caregiving or parental anxieties and fears) on the sleep patterns of the parents. The HOST questionnaire is specifically designed for the assessment of the sleep-related disturbance in parents of a child with SPMI and for mapping the parents’ night-time disruption caused by the time needed for caring for the child. The HOST questionnaire is used to collect data on changes in family circumstances and a variety of problems (i.e. partnership, social contacts,

1188

Developmental Medicine & Child Neurology 2014, 56: 1187–1193

• •

What this paper adds Our study depicted that both the quality of sleep and quality of life (i.e. health status, social or professional life) of parents of children with severe psychomotor impairment are profoundly affected. Sleep disturbances and parental burden have a negative impact on each other.

impact on job performance) caused by sleep disturbances of the child or the parents. Detailed data on the HOST questionnaire, its development and validation as well as reference values for the HOST assessment have been published elsewhere.14 The HOST questionnaire is valid for participants up to 25 years in age because young adults (18 – 25y) with SPMI may have the same developmental and parenting needs as those under the age of 18 years, and these young adults are often cared for by their parents.14 PSQI addresses the frequency of sleep-disturbing events, adult sleep quality, habitual sleep efficiency, sleep latency, sleep duration, the use of sleep medication, and daytime dysfunction during the 4 weeks preceding the survey.18,20 The SF-36 is a disease-independent tool for the assessment of health-related QoL in patients. The SF-36 measures eight dimensions: physical functioning; role-physical; bodily pain; general health; vitality; scale functioning; roleemotional; and mental health.15 An aggregate percentage score is produced for each of the eight domains measured by the SF-36. The ESS is a widely used self-assessment tool for the measurement of daytime sleepiness in eight everyday situations. The participants estimate the probability of inadvertently falling asleep in a number of given situations.16 The SNAKE questionnaire evaluates symptoms and consequences of sleep disturbances and conditions known to have a direct or indirect impact on sleep in children with SPMI.17 The SNAKE questionnaire addresses parental sleep during the 4 weeks preceding the survey. We used the SNAKE questionnaire to investigate the relationship between a child’s sleep disturbances and parental sleep impairment. The study was approved by the ethics committee of Witten/Herdecke University, Germany.

Statistical analysis We performed a detailed descriptive data analysis focusing on parental sleep behavior and health status. We used the Student’s t-test to compare the data from our sample with published reference values (PSQI,20 SF-36,19 and ESS).16 The corresponding subscales of the SF-36, PSQI, and ESS data were correlated with the HOST scales to obtain a broad picture of parental sleep-related burden interrelationships between the HOST data and the other questionnaires. The degree to which parental burden and the child’s sleep disturbances were mutually exacerbated was determined using correlation analyses. The analyses were performed using SPSS version 19 (IBM SPSS Statistics 21, IBM Corporation Germany, Ehningen, Germany) and R-statistics (R Development Core Team

[2008], R Foundation for Statistical Computing, Vienna, Austria).

RESULTS Recruitment In-patients A total of 321 patients presenting between July 2008 and January 2010 at the participating institutions were eligible to participate in the study (Children’s Hospital Datteln, 263; Children’s Hospice ‘Balthasar’, Olpe, 15; Short-term Home ‘Kleine Oase’, Datteln, 43), and their families consented by phone to participate in the study. Of those families, 65% returned the questionnaires. Ten questionnaires were excluded because the child was staying in a nursing home. Eleven sets of questionnaires did not qualify for analysis because the rate of missing values exceeded 50%. The final in-patient sample size was 187. Outpatients From the 50 outpatients (Pediatric Palliative Care Team Datteln) eligible for participation, 28 (56%) consented to participate in the study. One set of questionnaires did not qualify for analysis because of the rate of missing values, so the outpatient sample size was 27. The total response rate (in-patients and outpatients) was 63% and data from a total of 214 participants were subjected to analysis. Demographic characteristics Therefore, the total sample of 214 children comprised 114 males and 100 females (mean age 10y 5mo, range 1mo– 25y). Detailed patient characteristics are shown in Table I and have been published elsewhere.17 Diagnoses All patients were diagnosed with severe psychomotor impairment. Further information is given in Table II and a related article.17 Nursing care Of the patients, 80% had accessed compulsory German nursing care insurance. A total of 130 children depended on round-the-clock assistance with personal hygiene, feeding, or mobility (Table II). Caregivers The mothers’ mean age was 41 years 3 months (SD 7y 6mo; n=212). The fathers’ mean age was 43 years and 8 months (SD 7y 3mo; n=193). The mother or foster mother filled in 81% of the questionnaires, the father or foster father filled in 6%, and both the mother and father (together) filled in 13%. In contrast to the mothers, most of the fathers were employed full-time (Table II). No intergroup differences with respect to setting (inpatient or outpatient setting) were apparent (data not shown).

Table I: Family characteristics Patients (n=214) Female/Male (n) Age mean (range), y:mo Caregiving levela (%)b None 1, need help at least once per day 2, need help at least three times per day 3, need help round-the-clock daily Parents (n=214) Nationality, % German Other (Polish, Russian, other) State of employment, % Fathers (n=176) Full-time Part-time Unemployed Mothers (n=171) Full-time Part-time Unemployed (%)

100/114 10:5 (1mo–25y) 12 8 14 58

88.8 11.2

82.9 4.5 12.5 11.1 22.8 66.1

a

Caregiving level, as defined by the federal ministry of health, Germany (http://www.bmg.bund.de/ministerium/presse/english-version.html): 1, those who need help at least once a day with bodily care, food, or mobility for at least two performances in one or more fields. On average, this need for care must require at least 90 minutes or more per day than the time required caring for a normal child of the same age. 2, those who need help at least three times per day at different times of day with bodily care, food or mobility and, in addition, several instances of daytime help. On average, this must require at least 3 hours more per day than the time required to care for a normal child of the same age. 3, those who need help daily, around the clock, and also at night, with bodily care, food, or mobility, and, in addition, several times of day. On average, this must require at least 5 hours per day, and the nurse must be on call around the clock. b8% of values are missing.

Although they were entitled to a minimum of level one caregiving (Table II), 97% of the families had no external support during the night. In 80% of the cases, the mother Table II: Distribution of diagnoses of children with severe psychomotor impairment (grouped) Primary diagnosis n Metabolic disorder/ neurodegenerative disorder Cerebral palsy/ neuromuscular disorder Cerebral ischaemia Cerebral haemorrhage Cerebral inflammation Brain tumor Global developmental delay (several causes) Hypoxia Traumatic brain injury Severe spina bifida Syndrome Cerebral malformation Other Diagnosis not established Total

Secondary diagnosis

%

n

%

23

11





54

25

7

3

7 5 5 2 35

3 2 2 1 16

1 6 2 2 3

0 3 1 1 1

5 1 5 28 8 4 32 214

2 0 2 13 4 2 15 100

7 1 2 1 2 3 177

3 0 1 0 1 1 83

Sleep Disturbances in Children and Parental QoL Anna L Tietze et al.

1189

provided the care for her disabled child at night, while both parents did so in 15% of the cases. Of the mothers who were primary caregivers for their child, 49% reported that they were not usually supported by their partner with respect to night-time caring for their child. In 24% of the families, the affected child slept in his or her parents’ bedroom more than three times per week. According to the parents, caring for their child took an average of 52 minutes per night (median, 30min; range, 0–300min).

Parental sleep and health status The PSQI score (median 8; 95% confidence interval [CI]: 7.5–8.8) and the ESS sum score (median 9; 95% CI: 8.5– 9.8) are normally distributed among the study participants regardless of their age and nationality. Compared with a normal population, the parents of children with SPMI indicated a significantly greater number of sleep problems (PSQI20) and more daytime sleeping (ESS16) (p

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep.

In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated meas...
320KB Sizes 1 Downloads 3 Views