Hall, Sandra. (1996). An exploration of parental perception of the nature and level of support needed to care for the child with special needs. Journal of Advanced Nursing. 24. 512-21. 10.1046/j.1365-2648.1996.21911.x.
This study attempted to identify parental perceptions of the support that is necessary to care for their children with special needs. This study took place in Slough, England. 25 parents of children ages 0-19 were given questionnaires to fill out that included 39 multiple choice questions. The children were then split up into 4 age groups and a parent from each age group was selected to participate in a one-hour interview that consisted of 7 open-ended questions.
Outcomes: Most parents agreed that the timeliness and manner of receiving the diagnosis has improved but the extra support offered after the diagnosis has not. Most support for the children and their children comes from relatives and educators, not healthcare professionals. Overarching themes of the interviews included the uncertainty of what would happen to the older children when they were out of school and the time-consumption of having to find out everything for yourself. Overall half the parents were satisfied with their support and half were not.
Here are some blurbs from the interviews with the parents:
“It seems to take so long to get into the system, and find out what is available, and then there is normally a waiting list. I think it would be useful to have a link worker who is ‘au fait’ with all the information, not a specialist from social services or health, but someone who can encompass all the disciplines would be invaluable, possibly a parent, who has been counseled, and has a child with special needs.”
“When I needed respite care there was a two year waiting list. Most information collected in the past has been through other parents, hopefully this will change.”
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