The parents' perspective of the early diagnostic period of their child with hearing loss: information and support.
Nerina Scarinci, Ennur Erbasi, Emily Moore and 2 others
PMID 28332410WHAT IT FOUND
Most parents of newly diagnosed children with hearing loss were satisfied with support and information, but comments and interviews described shock, delays, confusing service roles, and pressure to choose early intervention quickly.
Key findings
01Most caregivers reported satisfaction with personal/emotional support (85.3%) and with information (85.5%) at the time of diagnosis.
02Dissatisfaction was concentrated with general practitioners and diagnostic audiologists: 21.9% and 20.4% were dissatisfied with personal/emotional support, and 33.9% and 17.2% with information.
03In interviews with five parents, the diagnostic period was described as emotionally difficult, service roles were confusing, and families felt pressure to choose early intervention quickly.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
Phase 2 included only 5 parents from 3 families, so it cannot capture the full range of parent experiences. Data were retrospective, with families recalling diagnosis up to six years earlier, so recollection bias is possible. Phase 1 asked caregivers to recall information and support at diagnosis rather than observe it. The study did not investigate other written information families might have received or accessed. The paper does not test an intervention or measure child speech, language, or functional outcomes. The qualitative sample was limited to families whose child had a nonverbal cognitive ability score of at least 85 and had received educational intervention for 3 years.
Declared interests
The supplied metadata lists research support from NIH (extramural) and non-U.S. government. No author conflict-of-interest declaration is given in the supplied text.
The easy way to misread this
Do not conclude that most families are well supported and no changes are needed. Although 85.3% were satisfied with personal/emotional support and 85.5% with information, open comments and interviews described delays, limited information, shock, confusion about service roles, and pressure to choose early intervention quickly.