Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia
Younger-onset dementia (YOD) refers to onset before 65 years of age and may be associated with a genetic cause. Family communication surrounding any genetic risk is complex, and this process may be further complicated in a YOD context due to its effects on cognition, behaviour, and associated psycho...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2023-04-01
|
| Series: | Journal of Personalized Medicine |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2075-4426/13/4/621 |
| _version_ | 1797604759957405696 |
|---|---|
| author | Alice Poulton Lisette Curnow Dhamidhu Eratne Adrienne Sexton |
| author_facet | Alice Poulton Lisette Curnow Dhamidhu Eratne Adrienne Sexton |
| author_sort | Alice Poulton |
| collection | DOAJ |
| description | Younger-onset dementia (YOD) refers to onset before 65 years of age and may be associated with a genetic cause. Family communication surrounding any genetic risk is complex, and this process may be further complicated in a YOD context due to its effects on cognition, behaviour, and associated psychosocial consequences. This study aimed to investigate how individuals experience family communication about potential genetic risk and testing for YOD. Thematic analysis was performed on verbatim transcripts of nine semi-structured interviews undertaken with family members who attended a neurogenetics clinic due to a relative diagnosed with YOD. The interviews explored the participants’ experiences of learning that YOD might be inherited and the ensuing family communication about genetic testing. Four key themes emerged: (1) a clinical diagnostic odyssey was common and could be a motivator for genomic testing, (2) pre-existing family tension and/or disconnection was a common barrier, (3) family members’ autonomy was considered, and (4) avoidant coping strategies influenced communication. Communication regarding potential YOD genetic risk is a complicated process and may be influenced by pre-existing family dynamics, individual coping mechanisms, and a desire to promote autonomy in relatives. To promote effective risk communication, genetic counsellors should pre-emptively address family tensions that may be exacerbated in the context of genetic testing for YOD, with awareness that family strain during a preceding period of diagnostic odyssey is common. Genetic counsellors can offer psychosocial support to facilitate coping with this tension in an adaptive way. The findings also indicated the importance of extending genetic counselling support to relatives. |
| first_indexed | 2024-03-11T04:51:18Z |
| format | Article |
| id | doaj.art-b3b1751c56d54699bf2989f771da158d |
| institution | Directory Open Access Journal |
| issn | 2075-4426 |
| language | English |
| last_indexed | 2024-03-11T04:51:18Z |
| publishDate | 2023-04-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Personalized Medicine |
| spelling | doaj.art-b3b1751c56d54699bf2989f771da158d2023-11-17T19:59:44ZengMDPI AGJournal of Personalized Medicine2075-44262023-04-0113462110.3390/jpm13040621Family Communication about Diagnostic Genetic Testing for Younger-Onset DementiaAlice Poulton0Lisette Curnow1Dhamidhu Eratne2Adrienne Sexton3Department of Paediatrics, The University of Melbourne, Parkville, VIC 3051, AustraliaMurdoch Children’s Research Institute, Parkville, VIC 3052, AustraliaNeuropsychiatry, Royal Melbourne Hospital, Parkville, VIC 3051, AustraliaGenomic Medicine, The Royal Melbourne Hospital, Grattan St, Parkville, VIC 3050, AustraliaYounger-onset dementia (YOD) refers to onset before 65 years of age and may be associated with a genetic cause. Family communication surrounding any genetic risk is complex, and this process may be further complicated in a YOD context due to its effects on cognition, behaviour, and associated psychosocial consequences. This study aimed to investigate how individuals experience family communication about potential genetic risk and testing for YOD. Thematic analysis was performed on verbatim transcripts of nine semi-structured interviews undertaken with family members who attended a neurogenetics clinic due to a relative diagnosed with YOD. The interviews explored the participants’ experiences of learning that YOD might be inherited and the ensuing family communication about genetic testing. Four key themes emerged: (1) a clinical diagnostic odyssey was common and could be a motivator for genomic testing, (2) pre-existing family tension and/or disconnection was a common barrier, (3) family members’ autonomy was considered, and (4) avoidant coping strategies influenced communication. Communication regarding potential YOD genetic risk is a complicated process and may be influenced by pre-existing family dynamics, individual coping mechanisms, and a desire to promote autonomy in relatives. To promote effective risk communication, genetic counsellors should pre-emptively address family tensions that may be exacerbated in the context of genetic testing for YOD, with awareness that family strain during a preceding period of diagnostic odyssey is common. Genetic counsellors can offer psychosocial support to facilitate coping with this tension in an adaptive way. The findings also indicated the importance of extending genetic counselling support to relatives.https://www.mdpi.com/2075-4426/13/4/621dementiayounger onsetcommunicationgenetic counsellinglived experiencegenetic testing |
| spellingShingle | Alice Poulton Lisette Curnow Dhamidhu Eratne Adrienne Sexton Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia Journal of Personalized Medicine dementia younger onset communication genetic counselling lived experience genetic testing |
| title | Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia |
| title_full | Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia |
| title_fullStr | Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia |
| title_full_unstemmed | Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia |
| title_short | Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia |
| title_sort | family communication about diagnostic genetic testing for younger onset dementia |
| topic | dementia younger onset communication genetic counselling lived experience genetic testing |
| url | https://www.mdpi.com/2075-4426/13/4/621 |
| work_keys_str_mv | AT alicepoulton familycommunicationaboutdiagnosticgenetictestingforyoungeronsetdementia AT lisettecurnow familycommunicationaboutdiagnosticgenetictestingforyoungeronsetdementia AT dhamidhueratne familycommunicationaboutdiagnosticgenetictestingforyoungeronsetdementia AT adriennesexton familycommunicationaboutdiagnosticgenetictestingforyoungeronsetdementia |