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. 2020 May 22;20:244. doi: 10.1186/s12887-020-02045-5

Table 1.

Profile of participants from included studies

Author and Year Number of Parents Profile of Parents mother/father Number of Children Gender of child Age of Children Disability Characteristics
Benderix et al., 2007 5 couples Not specified 5 Not specified 10-11 years Learning disability moderate ×1 severe ×3 bprofound × 1 Delayed verbal/absent language, lacked spontaneous seeking of enjoyment, little or no interest in other persons, hyperactivity, short attention span, self-injurious behaviour, high pain threshold, disorders of sleep.
Gona et al., 2016

103

parents (& HCP’s)

Not specified Not specified Not specified Not specified Not specified Not specified
Hartrey 2003 1 mother 1 female 8 years intellectual regression Rett Syndrome, scoliosis, anti-social, constipation, reflux, teeth grinding
Hodgetts et al. 2013 9 mothers (8) father (1) 7 children (under the age of 19) (2 aged 19&29) Male 6-10 years All had moderate to severe intellectual disability. 3 had some functional language, 2 did not have functional language. 4 individuals were diagnosed with Asperger syndrome, had mild or no intellectual impairment, and demonstrated conversational language skills.
Mann 2013 13 13 mothers 13 Male (11) Female (2) 4-17 yrs

Disability not specified.

Autism described as Moderate (4), mild (3), severe and ADHD (2) Mild to mod (1)

*as reported by mothers
Minhas et al. 2015 15

mothers (11)

fathers (4)

Not specified

Male (12)

Female (3)

Not specified Not specified Not specified
Keenan 2007 95 parents and carers 87 (female = 4 grandmothers and 3 mothers) 8 (male) 100

Male (80)

Female (20)

mean age 8 years

30 (1-6 yrs)

56 (7-12 yrs)

11 (13-15 yrs)

3 (16 yrs)

Intellectual disability: 56 with learning disability ranging from mild, moderate and severe

ASD (90)

Aspergers (7)

PDD (2)

Unknown (1)