Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions
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2016
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ndltd-OhioLink-oai-etd.ohiolink.edu-osu14603792992021-08-03T06:35:32Z Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions Lahner, Nicole Communication Genetics communication genetic counseling pediatrics diagnosis Background: Communication and counseling are critical to helping parents cope with a genetic diagnosis in their child, and there are various models suggesting the ideal manner in which to communicate information about a diagnosis. Previous studies using parent surveys and simulated genetic counseling sessions demonstrate healthcare providers emphasize medical and genetic information over quality of life issues at the time of a diagnosis and attend less often to parents’ psychosocial concerns.Methods: Researchers audio recorded pediatric genetic counseling sessions during which a family was receiving an initial diagnosis in a child. Researchers also surveyed parents about their counseling experience.Results: Analysis of twenty sessions indicates providers’ focus is on educating parents/ guardians about technical medical and genetic aspects of the condition. Providers discussed quality of life issues less often in our study and usually did so in response to parents/guardians’ concerns or in the context of referrals to other families. Additionally, providers and parents were cooperating partners in the exchange of biomedical information about the pediatric patient. Providers also attended to parents/guardians’ emotions via empathic statements and by proactively addressing genetic guilt. Finally, the majority of parents reported helpful aspects about their genetic counseling session and found their experience to be positive. Limitations: Limitations of our study include parents/guardians with a serious diagnosis in their child not being invited to participate. All subjects were Caucasian, so our findings are not generalizable to other patient populations. In addition, parents may have received brief telephone counseling about the diagnosis prior to their initial visit, and we did not account for this aspect of communication in our analysis. Furthermore, the parent/guardian survey asked about helpful aspects before unhelpful aspects, which may have biased participants’ responses. Future research includes determining if a similar communication strategy is used by groups of genetic providers in other pediatric genetics clinics. Other studies might also focus on patients from non-Caucasian ethnic backgrounds and/or clinics in other states or countries. It would also be useful to re-contact the parents/guardians and ask if their perceptions of their genetic counseling session have changed from their initial survey responses. Finally, video-recording genetic counseling sessions would allow for further characterization of providers’ and parents’ psychosocial behaviors.Conclusions: Genetic providers’ communication pattern emphasizes education and information giving and involves some engagement of parents/guardians’ emotions. Providers expressed empathy but directly assessed parents’ concerns less often. Providers also appear to not view quality of life issues as important to discuss at the time of an initial diagnosis. Parents were given resources, most often information about their child’s disorder and the genetic test results. Providers and parents were also cooperating partners in the exchange of biomedical information about the child. Finally, the majority of parents/guardians perceived this pattern of communication in their genetic counseling sessions to be helpful. 2016-09-22 English text The Ohio State University / OhioLINK http://rave.ohiolink.edu/etdc/view?acc_num=osu1460379299 http://rave.ohiolink.edu/etdc/view?acc_num=osu1460379299 unrestricted This thesis or dissertation is protected by copyright: all rights reserved. It may not be copied or redistributed beyond the terms of applicable copyright laws. |
| collection |
NDLTD |
| language |
English |
| sources |
NDLTD |
| topic |
Communication Genetics communication genetic counseling pediatrics diagnosis |
| spellingShingle |
Communication Genetics communication genetic counseling pediatrics diagnosis Lahner, Nicole Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions |
| author |
Lahner, Nicole |
| author_facet |
Lahner, Nicole |
| author_sort |
Lahner, Nicole |
| title |
Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions |
| title_short |
Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions |
| title_full |
Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions |
| title_fullStr |
Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions |
| title_full_unstemmed |
Assessment of Genetic Provider and Parent Communication Patterns in Pediatric Genetic Counseling Sessions |
| title_sort |
assessment of genetic provider and parent communication patterns in pediatric genetic counseling sessions |
| publisher |
The Ohio State University / OhioLINK |
| publishDate |
2016 |
| url |
http://rave.ohiolink.edu/etdc/view?acc_num=osu1460379299 |
| work_keys_str_mv |
AT lahnernicole assessmentofgeneticproviderandparentcommunicationpatternsinpediatricgeneticcounselingsessions |
| _version_ |
1719439669836382208 |