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Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Overview of attention for article published in Orphanet Journal of Rare Diseases, January 2017
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  • Good Attention Score compared to outputs of the same age (70th percentile)
  • High Attention Score compared to outputs of the same age and source (82nd percentile)

Mentioned by

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5 tweeters
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3 Facebook pages

Citations

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36 Dimensions

Readers on

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180 Mendeley
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Title
Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life
Published in
Orphanet Journal of Rare Diseases, January 2017
DOI 10.1186/s13023-016-0563-3
Pubmed ID
Authors

Yuka Mori, Jenny Downs, Kingsley Wong, Barbara Anderson, Amy Epstein, Helen Leonard

Abstract

Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy. Data were sourced from the International CDKL5 Disorder Database to which 192 families with a child with a pathogenic CDKL5 mutation had provided data by January 2016. The Short Form 12 Health Survey Version 2, yielding a Physical Component Summary and a Mental Component Summary score, was used to measure primary caregiver's wellbeing. The Beach Center Family Quality of Life Scale was used to measure family quality of life. Linear regression analyses were used to investigate relationships between child and family factors and the various subscale scores. The median (range) age of the primary caregivers was 37.0 (24.6-63.7) years and of the children was 5.2 (0.2-34.1) years. The mean (SD) physical and mental component scores were 53.7 (8.6) and 41.9 (11.6), respectively. In mothers aged 25-54 years the mean mental but not the physical component score was lower than population norms. After covariate adjustment, caregivers with a tube-fed child had lower mean physical but higher mean mental component scores than those whose child fed orally (coefficient = -4.80 and 6.79; p = 0.009 and 0.012, respectively). Child sleep disturbances and financial hardship were negatively associated with the mental component score. The mean (SD) Beach Center Family Quality of Life score was 4.06 (0.66) and those who had used respite services had lower scores than those who had not across the subscales. Emotional wellbeing was considerably impaired in this caregiver population, and was particularly associated with increased severity of child sleep problems and family financial difficulties. Family quality of life was generally rated lowest in those using respite care extensively, suggesting that these families may be more burdened by daily caregiving.

Twitter Demographics

The data shown below were collected from the profiles of 5 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 180 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Bermuda 1 <1%
Unknown 179 99%

Demographic breakdown

Readers by professional status Count As %
Student > Master 29 16%
Student > Bachelor 20 11%
Student > Ph. D. Student 14 8%
Student > Doctoral Student 13 7%
Researcher 12 7%
Other 31 17%
Unknown 61 34%
Readers by discipline Count As %
Psychology 33 18%
Medicine and Dentistry 30 17%
Nursing and Health Professions 26 14%
Neuroscience 5 3%
Biochemistry, Genetics and Molecular Biology 4 2%
Other 17 9%
Unknown 65 36%

Attention Score in Context

This research output has an Altmetric Attention Score of 5. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 26 January 2017.
All research outputs
#4,289,166
of 16,006,922 outputs
Outputs from Orphanet Journal of Rare Diseases
#528
of 1,707 outputs
Outputs of similar age
#104,457
of 359,079 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#3
of 17 outputs
Altmetric has tracked 16,006,922 research outputs across all sources so far. This one has received more attention than most of these and is in the 73rd percentile.
So far Altmetric has tracked 1,707 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.4. This one has gotten more attention than average, scoring higher than 68% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 359,079 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 70% of its contemporaries.
We're also able to compare this research output to 17 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 82% of its contemporaries.