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- Title
Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences.
- Authors
Crook, Ashley; Jacobs, Chris; Newton‐John, Toby; McEwen, Alison
- Abstract
Genetic counseling and diagnostic genetic testing is part of the multidisciplinary care of people with amyotrophic lateral sclerosis (ALS, commonly called motor neurone disease, MND) and frontotemporal dementia (FTD). We explored client experiences of genetic counseling and diagnostic testing to inform the care of future families. Semi‐structured interviews with individuals with ALS/MND/FTD or their relatives were conducted. The study was designed to include a wide variety of participants with varying disease status and abilities. Genetic counseling and diagnostic testing experiences were explored using interpretive description methodology. Bioecological theory was used as the framework for the reflexive thematic analysis. Eighteen individuals with ALS/MND/FTD or their relatives from 13 Australian families participated. Three themes were identified: sharing knowledge, (un)supportive care, and 'circumstance is everything'. Consistent with bioecological theory, one's genetic counseling experience was informed by individual circumstances, time, and proximal factors. These informed the level of information and support required in the genetic counseling process. Although some client circumstances cannot be changed, efforts could be made to enhance genetic counseling experiences by improving interactions between the client and their care team. Some clients may benefit from further discussions regarding the familial implications of genetic testing, and greater support with family communication. Clients' needs were derived from the data and will contribute to genetic counseling consensus guidelines.
- Subjects
AUSTRALIA; GENETICS of amyotrophic lateral sclerosis; CONSENSUS (Social sciences); SOCIAL support; RESEARCH methodology; MATHEMATICAL models; GENETIC testing; INTERVIEWING; ECOLOGICAL research; EXPERIENCE; PATIENTS' attitudes; QUALITATIVE research; FAMILY-centered care; FAMILY attitudes; HEALTH literacy; MEDICAL protocols; AMYOTROPHIC lateral sclerosis; HEALTH attitudes; THEORY; GENETIC counseling; THEMATIC analysis; FAMILY relations; FRONTOTEMPORAL dementia
- Publication
Journal of Genetic Counseling, 2022, Vol 31, Issue 5, p1206
- ISSN
1059-7700
- Publication type
Article
- DOI
10.1002/jgc4.1591