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How do Parents Perceive the Initial Medical Consultation on their Child's Developmental Disorder?
Lena Charlott Hotopp1, Ulrike Petra Spindler1, Vivien Angela Bach1
1Klinik und Poliklinik für Kinder und Jugendliche, Zentrum für pädiatrische Forschung, Universitätsklinikum Leipzig.
Insights
Parents generally view their child's developmental disorder diagnosis positively. However, many seek further information, often turning to the internet and their doctor for answers about the child's prognosis.
Area of Science:
- Pediatric developmental disorders
- Family impact of childhood illness
- Healthcare communication
Background:
- Childhood developmental disorders significantly affect families.
- Limited research exists on parental perceptions of diagnosis disclosure.
Purpose of the Study:
- To investigate parental experiences and perceptions of the initial medical consultation for their child's developmental disorder diagnosis.
- To identify key topics discussed and parental satisfaction with the consultation.
Main Methods:
- Qualitative interviews with parents of children diagnosed with developmental disorders.
- Data collected from outpatients at a university hospital.
- Analysis of parent recall and satisfaction regarding the diagnostic consultation.
Main Results:
- Diagnosis occurred a median of 4 months after symptom onset.
- Support options were the most discussed topic (68%).
- 65% rated the consultation as good/very good, but 38% had unanswered questions, primarily about prognosis.
- Parents frequently used treating physicians (86%) and the internet (76%) for further information.
Conclusions:
- Parents generally perceive initial consultations for developmental disorders favorably.
- A significant portion of parents have remaining questions, particularly regarding prognosis.
- The internet serves as a crucial resource for parents seeking additional information post-consultation.
Background:
A developmental disorder of a child has a major impact on the affected families' lives. However, data about the parents' perception of the revealing of the diagnosis is scarce.
Patients And Methods:
Parents of children with developmental disorder treated as outpatients in a university hospital were interviewed about the initial medical consultation concerning the diagnosis of their child.
Results:
Parents of 210 children agreed to take part in the study. 35/210 (17%) had to be excluded from the study as they were not able to remember the initial medical consultation, or claimed there was either no initial medical consultation or they did not attend it. The diagnosis of developmental disorder was made in median 4 months (Q25/Q75: 0/12; min/max: 0/63) after the parents had noticed the first symptoms. According to the parents, options to support the development of the child were the most frequently addressed topic in the initial medical consultation (119/175, 68%). Some parents wished more empathy (19/175, 11%), and less medical terminology (12/175, 7%). 114/175 (65%) of parents rated the initial medical consultation as "very good" or "good". After their initial medical consultation, 66/175 (38%) of the parents had open questions mainly concerning the prognosis of the disease. Sources of information that were used after the consultation were most often the treating physician (150/175, 86%) and the internet (133/175, 76%).
Conclusion:
Generally, parents perceive the initial medical consultation on the developmental disorder of their child well. Nevertheless, many parents state that they had unanswered questions after the consultation. The internet is one of the main sources parents use to answer those questions.
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