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The supportive care needs of parents with a child with a rare disease: results of an online survey

Overview of attention for article published in BMC Family Practice, July 2016
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (87th percentile)

Mentioned by

news
1 news outlet
twitter
3 tweeters
facebook
2 Facebook pages

Citations

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42 Dimensions

Readers on

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139 Mendeley
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Title
The supportive care needs of parents with a child with a rare disease: results of an online survey
Published in
BMC Family Practice, July 2016
DOI 10.1186/s12875-016-0488-x
Pubmed ID
Authors

Lemuel J. Pelentsov, Andrea L. Fielder, Thomas A. Laws, Adrian J. Esterman

Abstract

Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease. An online survey was developed consisting of 45 questions (108 items) and separated into six domains. The survey included questions about perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and parents overall satisfaction with the support received. Three-hundred and one parents from Australia and New Zealand completed the survey; 91 % (n = 275/301) were mothers, with 132 distinct rare diseases being reported. Fifty-four percent (n = 140/259) of parents were dissatisfied with health professionals' level of knowledge and awareness of disease; 71 % (n = 130/183) of parents felt they received less support compared to other parents. Information regarding present (60 %, n = 146/240) and future services (72 %, n = 174/240) available for their child were considered important. Almost half of parents (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced their working hours and 34 % (n = 79/236) ceased paid employment. Forty-two percent (n = 99/223) of parents had no access to a disease specific support group, and 58 % (n = 134/230) stated that their number of friends had reduced since the birth of their child; 75 % (n = 173/230) had no contact with other parents with a child with a similar disease, and 46 % (n = 106/230) reported feeling socially isolated and desperately lonely. Most frequent emotions expressed by parents in the week prior to completing the survey were anxiety and fear (53 %, n = 119/223), anger and frustration (46 %, n = 103/223) and uncertainty (39 %, n = 88/223). This study is the first to develop an online survey specifically for use with parents to investigate their supportive care needs across a large and diverse group of rare diseases. The findings highlight that parents with a child with a rare disease have common unmet needs regardless of what disease their child has. Such information may allow health providers to improve child outcomes through improving parental supportive care.

Twitter Demographics

The data shown below were collected from the profiles of 3 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 139 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 139 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 40 29%
Researcher 11 8%
Student > Bachelor 11 8%
Student > Ph. D. Student 11 8%
Student > Postgraduate 9 6%
Other 30 22%
Unknown 27 19%
Readers by discipline Count As %
Psychology 24 17%
Nursing and Health Professions 23 17%
Medicine and Dentistry 23 17%
Biochemistry, Genetics and Molecular Biology 8 6%
Agricultural and Biological Sciences 7 5%
Other 15 11%
Unknown 39 28%

Attention Score in Context

This research output has an Altmetric Attention Score of 14. 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 07 July 2020.
All research outputs
#1,719,705
of 18,156,586 outputs
Outputs from BMC Family Practice
#209
of 1,768 outputs
Outputs of similar age
#33,740
of 272,645 outputs
Outputs of similar age from BMC Family Practice
#1
of 1 outputs
Altmetric has tracked 18,156,586 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 90th percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,768 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.0. This one has done well, scoring higher than 88% 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 272,645 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 87% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them